I have been silent the last month and a half concerning my bone marrow transplant. It has been a very hard past six weeks for me. My body is weak beyond words. I spent three and a half weeks in the hospital due to a very bad case of GVHD of the GI tract. Food would not stay down and I was put back on steroids and IV food and meds. A side affect of the GvHD was that my intestines/stomach stopped absorbing nutrients into my vessels and veins and all the IV medications and TPN (IV food) have pooled into my legs. Severe swelling from my thighs to my toes (edema) has just added another physical burden to already internally weakened body. I feel as though I'm lugging around weights and am unable to lift my legs without using my hands. This external physical disability has proven to be such a trial for me. I have prayed and am continuing to pray for a quick work of healing. I know God is healing me everyday concerning the edema, but I would like to ask all those who know how to pray to ask the Lord for a divine miraculous healing. I am doing everything the doctors have advised to treat the swelling, but I feel the need to reach out and ask others to join me in prayer. Please pray for the actual GVHD also. Thanksgiving day I was only able to eat chicken broth, but thank the Lord I am now able to eat solid mild foods. My intestines are slowly healing but they constantly churn and ache. I need a special touch on my GI tract.
Concerning the actual transplant, I had a bone marrow biopsy recently and its preliminary findings showed that my marrow was producing blood but the doctors believe the specific brand of immunosuppressive drug they have had me on from the beginning is attacking and destroying what has been made. A 'cousin' drug will replace the one I had been taking and hopefully won't attack my marrow. I am asking all of you wonderful people who have been praying for me this whole time to pray specifically that the new drug will work and my body can finally start to heal and my blood counts to grow.
I also have three viruses that are persistently hanging on. BK, CMV, & EBV are their names. I am asking for prayer that these viruses will die out and leave my body. Please pray with me.
Mentally, I have never been so unstable. I feel so broken inside with no will to live or move or fight to live another day. Rest is my daily desire. Rest from pain, from weakness, rest from living at times. Everyday is a fight for peace and sanity. I want to try to put into words the condition of my mind but I fear I can't truly explain it. I have to push myself to move, bathe, eat, and even sleep. Anxiety chokes me at times and I feel as though my mind will explode. But I have found a sanctuary. In the bathroom, of all places. It's the only 'room' in our hotel room where I can be alone and talk with the Lord.
I have cried and begged and pleaded with the Lord to take me home with him. I have asked and prayed for just blessed rest. And I have had the most close encounters with Jesus Christ than I have ever had in my life. During my pleas for relief and mercy, the power of the Holy Ghost would completely fill my body and overtake me. Tongues come forth so strong and powerful. and I feel as though Jesus Christ himself is inside me. My prayers turn to requests of miraculous healing virtue to flow through my body. For divine miraculous healing to flood into every part of me. And His strength comes! Filling my entire being with electric power. He hears me! He heals me! He comes into that bathroom and surrounds me. He touches my mind and my soul and he calms my fears. His mercy covers my worn and tired soul and I feel alive again. He even showed up with a special touch while I was brushing my teeth! Speaking in tongues and toothpaste are quite a combo. But I stopped what I was doing and received His touch. Anytime He shows up, I pray I can always be so sensitive to Him.
Time will pass and I pray this transplant will just be a horrible nightmare that I can forget. The one thing I don't ever want to lose is the brokenness and closeness I have felt from Jesus. I pray daily for Him to carry me. To carry me through each hour, each day, each moment. To hold me so close and let me rest in him. The nurses and doctors use the word 'fight' to describe how to make it through this ordeal. I have chosen the word rest. I will rest in Him. I will rest in my Healer and let Him carry me through. My fight is gone and the only thing I must do is say 'not my will, but thine be done.' As a human, it is a hard thing to surrender but it is the only place to find rest. Rest is what I most desire.
I would also like to express my love and appreciation for my mother. She has literally saved my life. This has been such a toil on her. She has been so strong and brave during this entire time that I am in awe of how strong of a woman she is. I ask all of her friends to please keep her in your prayers. Pray for her everyday. Pray for health, healing, and peace of mind. Pray for her strength to keep pulling me through this hard time.
I ask that you all rebuke the spirits of, anxiety, oppression, and depression. That peace, hope, and joy would fill our current living area.
Please pray for my husband. A greater, kinder, patient man, I have never met. He has been so strong during this time. I feel awful that I can't be with him and be the wife I need to be. That is its own burden. Please pray for him and be there for him. Our family needs your prayers.
I want to say thank you from the bottom of my heart for every prayer that anyone has uttered on my behalf. At times I feel as though it's greedy of me to ask for prayers but they are the only thing I truly need. I have learned the value and need to pray for others that are suffering. I sincerely pray for all those that are sick and in need of healing.
We still have no date of when I can be released to go home. I am dependent on blood and platelet transfusions now and until my marrow gets a fighting chance to produce blood I'm not stable enough to leave.
I ask you all to pray and believe for a miraculous work that God may receive all the glory. That everyone will know He is real and divine and ever-present. I want to testify of all He has done for me. To declare boldly that Jesus Christ is a Healer and that He does a quick work.
Pray. Pray. Pray.
Thank you.
Alicia
Thursday, December 13, 2012
Tuesday, October 9, 2012
My Bone Marrow Transplant: Day 56 - 62
The week was one centered around the treatment of the blood virus, CMV. The drug used to treat the CMV, foscarnet, was really starting to take a toll on my body. I had to go into clinic every day for a dose and its side affects were everything I had been warned about.
Labs were drawn each morning to check my kidney function. The foscarnet was known to be hard on the kidneys so each dose was based on what the doctors thought my body could handle that day. I was given a nausea medicine, phenagren, before each dose and it did the trick to the keep the nausea at bay. My face would tingle and my entire face and even my gums would start to tingle and go numb. My limbs would feel absolutely drained and it was a chore just to stand up. Completely and utterly wiped out was how the inside of my body felt and all I wanted to do when I got home was sit down and sleep. I usually ended up recovering a sense of normalcy around dinner time.
By Tuesday, my CMV levels had greatly increased and it was decided that I would need to go to the clinic for an extra dose at night. The doubling of the dosage really took a toll on my body. Getting up from a chair was a challange! Wednesday through Friday I returned to the hospital's infusion center for another dose of Foscarnet - a two hour process last from 8 - 10. Early days at the clinic and long nights at the infusion clinics made for an exhausting week.
Sunday another CMV test was taken with hopes the counts would go down due to all the heavy dosing that had been given.
Labs were drawn each morning to check my kidney function. The foscarnet was known to be hard on the kidneys so each dose was based on what the doctors thought my body could handle that day. I was given a nausea medicine, phenagren, before each dose and it did the trick to the keep the nausea at bay. My face would tingle and my entire face and even my gums would start to tingle and go numb. My limbs would feel absolutely drained and it was a chore just to stand up. Completely and utterly wiped out was how the inside of my body felt and all I wanted to do when I got home was sit down and sleep. I usually ended up recovering a sense of normalcy around dinner time.
By Tuesday, my CMV levels had greatly increased and it was decided that I would need to go to the clinic for an extra dose at night. The doubling of the dosage really took a toll on my body. Getting up from a chair was a challange! Wednesday through Friday I returned to the hospital's infusion center for another dose of Foscarnet - a two hour process last from 8 - 10. Early days at the clinic and long nights at the infusion clinics made for an exhausting week.
Sunday another CMV test was taken with hopes the counts would go down due to all the heavy dosing that had been given.
Tuesday, October 2, 2012
My Bone Marrow Transplant: Day 49 - 55
Started this week feeling very week and drained. I was able to attend a painting class on Tuesday with my mother and even though I was very tired and nauseated I was able to get out of the house and paint a plate. It was good therapy.
The next clinic visit showed I needed platelets so they were ordered up and I was also told I had developed a new virus. CMV. I had been warned before transplant that this virus was one they would be testing for on a regular basis. It's a virus that attacks the blood and if caught and treated soon enough has no immediate side affects. If left alone, it would eventually damage my organs. One of the two drugs they use to treat the virus is foscarnet. Side affects include nausea, depletion in electrolytes, GI upset, and a general drainage of strength and energy. The nurses said I would pretty much feel awful and tired all the time. The drug would be administered along with a bag of fluids; half given before the foscarnet and half afterwards taking approximately 3 hours. I would also need to come into the clinic everyday to get treatment for the rest of the week.
The next day in clinic a vomited up breakfast in the clinic right after taking my 10:00 meds. I had felt nauseated all day and that last bit of water to take my meds was all my stomach could take. I was told if I couldn't keep pills, liquid, or food down by the time I left the clinic I would be admitted to the hospital. No! I ended up eating a taco before the end of the day and was free to go home. Thankful! I will never understand how my stomach can be fine for days in a row and then decide it doesn't want to behave.
My headache has become nonstop and oxycodone does not help. I was given a prescription of Imatrex and it finally relieved the pain. The headache is positional and I can turn my head a certain way and it will send pain shooting up the back of my neck but if I leave my head still or in a certain way there is no pain. The doctors ordered an MRI to be taken late that evening to scan my neck and my brain to check for a possible pinched nerve. It lasted an hour and I slept through most of it because of all the drugs I had been on that day.
Finished out the week with daily visits to the clinic for a daily dose of foscarnet and a test to check the level of virus in my blood was done on Sunday. Results were expected to available by Tuesday or Wednesday. The side affects I had been warned about were spot on. After each dose I could feel how drained and weakened by body was becoming. I also had to be given nausea medication during the foscarnet and it made me drowsy. I felt as though the entire week was a just a daily trip to the clinic to take a nap.
My electrolytes were taking a hit too. I would receive a bag or two of magnesium, or a bag or pills of potassium, sodium phosphate, or calcium. The NP was very good about monitoring my blood and electrolyte levels.
The next clinic visit showed I needed platelets so they were ordered up and I was also told I had developed a new virus. CMV. I had been warned before transplant that this virus was one they would be testing for on a regular basis. It's a virus that attacks the blood and if caught and treated soon enough has no immediate side affects. If left alone, it would eventually damage my organs. One of the two drugs they use to treat the virus is foscarnet. Side affects include nausea, depletion in electrolytes, GI upset, and a general drainage of strength and energy. The nurses said I would pretty much feel awful and tired all the time. The drug would be administered along with a bag of fluids; half given before the foscarnet and half afterwards taking approximately 3 hours. I would also need to come into the clinic everyday to get treatment for the rest of the week.
The next day in clinic a vomited up breakfast in the clinic right after taking my 10:00 meds. I had felt nauseated all day and that last bit of water to take my meds was all my stomach could take. I was told if I couldn't keep pills, liquid, or food down by the time I left the clinic I would be admitted to the hospital. No! I ended up eating a taco before the end of the day and was free to go home. Thankful! I will never understand how my stomach can be fine for days in a row and then decide it doesn't want to behave.
My headache has become nonstop and oxycodone does not help. I was given a prescription of Imatrex and it finally relieved the pain. The headache is positional and I can turn my head a certain way and it will send pain shooting up the back of my neck but if I leave my head still or in a certain way there is no pain. The doctors ordered an MRI to be taken late that evening to scan my neck and my brain to check for a possible pinched nerve. It lasted an hour and I slept through most of it because of all the drugs I had been on that day.
Finished out the week with daily visits to the clinic for a daily dose of foscarnet and a test to check the level of virus in my blood was done on Sunday. Results were expected to available by Tuesday or Wednesday. The side affects I had been warned about were spot on. After each dose I could feel how drained and weakened by body was becoming. I also had to be given nausea medication during the foscarnet and it made me drowsy. I felt as though the entire week was a just a daily trip to the clinic to take a nap.
My electrolytes were taking a hit too. I would receive a bag or two of magnesium, or a bag or pills of potassium, sodium phosphate, or calcium. The NP was very good about monitoring my blood and electrolyte levels.
Tuesday, September 25, 2012
My Bone Marrow Transplant: Day 42 - 48
Day 42:
Clinic in the morning was met with great news. My bone marrow is officially 100% donor! I didn't realize it would be this soon before I was completely donor, but my NP informed me it was to be expected. I complained about the day before, how I felt miserable and nauseated all day, and my NP thinks it probably has something to do with the oxycodone I take at night to help with the headaches from the cyclosporine. I told her I would try not to take it all and see if it helped with the fuzzy headedness I usually feel the day after. She also told me my cyclosporine levels were too high and reduced my dose - another possible contributing factor to the fuzziness I had been feeling. Hopefully lowering the doses of both medications would make me feel better. Spending half the day just trying to feel decent and normal has become quite old.
Apparently, I had started to drink too much plain water and was told to incorporate a power drink of some sort to help improve my electrolytes. What a complete turn about. Before I couldn't drink enough water to stay hydrated, and then I was drinking too much and it was flushing my system of needed nutrients.
Day 43:
I was able to do some winter clothes shopping and attend a church service at night because I felt very well and strong that day.
Day 44:
I spent most of the day at home feeling very fatigued but blamed it on the shopping trip from the previous day. It is amazing how I can go from feeling 'great' one day to being completely wiped out the next. Each day holds its own surprises. My stomach has settle much more than before and the esophagus pain has definitely diminished.
Day 45:
Started the day with a routine clinic visit but ended up spending all (until 5:00p) there. My doctor wanted to give me an immunity booster called IVIG and it was infused for an hour. The immunity booster was to be given about once a week and it's supposed to help push my immunity along and it get developing more. No side affects were felt from it but because it is a human compound I was given a good dose of Benadryl and Tylenol to ward of a reaction. Benadryl = nap time.
My eye appoint to check into the 'floaters' I was seeing was today and I received good news from the doctor. Apparently the eye is full of a jelly like substance that the medication I'm on can solidify. The 'floaters' are just solid jelly and will eventually go away once I stop the medications. I was also told my retinas were in good shape and there was no damage to the eye itself. The doctor even told me my vision was 20/20 and I was surprised to hear that. I had worn glasses for years but stopped about two years ago. My eyesight improved when I stopped wearing glasses!
After the eye appointment I was told I would need to receive blood since by RBC dropped to 24 which meant I had another four hours of clinic visit in front of me. I sent my mother (caretaker) off to run errands and go relax at the apartment since there was no sense in both of us sitting around. Patients are given a big recliner type chair to sit in while caretakers are stuck in a simple upright chair that are not very comfortable. They hit me with another round of Benadryl as a premed for the blood so I spent the first two hours asleep.
Another concern was my low sodium levels. I was not to drink plain water at all and needed to drink energy drinks to improve my electrolyte counts. I was told to salt everything I ate and find salty things to eat too. I never thought I would have a doctor advise me to eat more salt! Needless to say, it was a very long day at the clinic.
Day 46:
I was asked to go back to the clinic to check my sodium levels again. A quick visit showed my sodium level rose a little but still needed to salt everything. Felt good all day and made a trip to a few stores. Started feeling puny by the end of the day and ended up vomiting breakfast and lunch. A call to the after hours clinic was made and I was advised to visit the clinic in the morning for a check up.
Day 47:
Felt much better by morning and the clinic visit at 9:00 was pretty much what I expected. They made sure I looked and felt okay and advised I should continue taking Reglan, a motility drug that helps move food from the stomach to the gut. I was able to make it to Sunday morning church services too and felt good the rest of the day.
Day 48:
My regular clinic was still to be kept for Monday, even though this was the fourth time in as many days that I had to go in. Sodium levels were still improving and my counts were decent except for low platelets.
I was to meet with a physical therapist at 2:00 for initial meeting to set a baseline for my strength level, and stamina. I did a few walking exercises and was measured for my current flexibility. PT was to be twice a week for an hour and to consist of moderate exercises and stretching in a group setting with other transplant patients. The meeting went well although my blood pressure dropped a bit and I became weak and dizzy.
We went to a few stores after the PT and I noticed I became very weak shopping in the afternoon and started to feel very weak in my muscles and fatigued in the rest of my body.
Day 43:
I was able to do some winter clothes shopping and attend a church service at night because I felt very well and strong that day.
Day 44:
I spent most of the day at home feeling very fatigued but blamed it on the shopping trip from the previous day. It is amazing how I can go from feeling 'great' one day to being completely wiped out the next. Each day holds its own surprises. My stomach has settle much more than before and the esophagus pain has definitely diminished.
Day 45:
Started the day with a routine clinic visit but ended up spending all (until 5:00p) there. My doctor wanted to give me an immunity booster called IVIG and it was infused for an hour. The immunity booster was to be given about once a week and it's supposed to help push my immunity along and it get developing more. No side affects were felt from it but because it is a human compound I was given a good dose of Benadryl and Tylenol to ward of a reaction. Benadryl = nap time.
My eye appoint to check into the 'floaters' I was seeing was today and I received good news from the doctor. Apparently the eye is full of a jelly like substance that the medication I'm on can solidify. The 'floaters' are just solid jelly and will eventually go away once I stop the medications. I was also told my retinas were in good shape and there was no damage to the eye itself. The doctor even told me my vision was 20/20 and I was surprised to hear that. I had worn glasses for years but stopped about two years ago. My eyesight improved when I stopped wearing glasses!
After the eye appointment I was told I would need to receive blood since by RBC dropped to 24 which meant I had another four hours of clinic visit in front of me. I sent my mother (caretaker) off to run errands and go relax at the apartment since there was no sense in both of us sitting around. Patients are given a big recliner type chair to sit in while caretakers are stuck in a simple upright chair that are not very comfortable. They hit me with another round of Benadryl as a premed for the blood so I spent the first two hours asleep.
Another concern was my low sodium levels. I was not to drink plain water at all and needed to drink energy drinks to improve my electrolyte counts. I was told to salt everything I ate and find salty things to eat too. I never thought I would have a doctor advise me to eat more salt! Needless to say, it was a very long day at the clinic.
Day 46:
I was asked to go back to the clinic to check my sodium levels again. A quick visit showed my sodium level rose a little but still needed to salt everything. Felt good all day and made a trip to a few stores. Started feeling puny by the end of the day and ended up vomiting breakfast and lunch. A call to the after hours clinic was made and I was advised to visit the clinic in the morning for a check up.
Day 47:
Felt much better by morning and the clinic visit at 9:00 was pretty much what I expected. They made sure I looked and felt okay and advised I should continue taking Reglan, a motility drug that helps move food from the stomach to the gut. I was able to make it to Sunday morning church services too and felt good the rest of the day.
Day 48:
My regular clinic was still to be kept for Monday, even though this was the fourth time in as many days that I had to go in. Sodium levels were still improving and my counts were decent except for low platelets.
I was to meet with a physical therapist at 2:00 for initial meeting to set a baseline for my strength level, and stamina. I did a few walking exercises and was measured for my current flexibility. PT was to be twice a week for an hour and to consist of moderate exercises and stretching in a group setting with other transplant patients. The meeting went well although my blood pressure dropped a bit and I became weak and dizzy.
We went to a few stores after the PT and I noticed I became very weak shopping in the afternoon and started to feel very weak in my muscles and fatigued in the rest of my body.
Tuesday, September 18, 2012
My Bone Marrow Transplant: Day 35 - 41
Day 35:
Had a clinic visit at 10:00a and felt sluggish and nauseated the entire time. I skipped doing a bag of IV fluids at home that morning because I knew I wouldn't have time to finish the bag before I had to leave for clinic. I didn't feel dehydrated but after vomiting the previous two days, I'm sure my body needed more fluids. Informed my NP that I still saw 'floaters' in my eyes and that my UTI symptoms had finally started improving. I was still struggling with the need to use the bathroom often but the pain had definitely diminished.
My NP advised we would go ahead with an endoscopy - a scope down my throat to take a look at my stomach. My stomach was aching up a storm and my esophagus was hurting too. I was given a dose of phenagren in clinic because of the persistent nausea and it left me feeling very tired and drowsy. Scheduled after my clinic was a one time breathing treatment to prevent a certain type of pneumonia and another chest x-ray.
After clinic, around 1:00p, I went to have the breathing treatment done and waited and slept in the waiting room for an hour. By the time I was back in the small room for the treatment, I knew I was in trouble. I felt very weak and was sitting down waiting on the respitory technician to start the procedure when I told her I needed a wheelchair and I needed to go home. She stepped out to find a wheelchair and I knew I was about to pass out. There was a small examination table in the room and I made an attempt to climb on it but never made it. I slid down the table in a dead faint and was told later my eyes had rolled back into my head, I had stopped breathing for half a minute, and I had made snoring/gargling noises in my throat. When I came to, I was spread eagle flat on my back with the technician calling my name and trying to get me to wake up. A rapid response team was called and two EMT's were there and started testing all my vitals including my blood sugar. I was eventually put on a stretcher and wheeled to the emergency room. It was around 2:00p.
A flood of nurses and doctors from the ER showed up, of course, to ask questions and check on me. They eventually hooked up a bag of fluids to just get me hydrated. I knew I was going to have to be check back into the hospital on 11 North but it took over eight hours to get processed from the ER to my room. I had not eaten all day because of feeling poorly in the morning. Had we known I would have been waiting in the ER for so long, my mother would have brought me food much earlier, but we kept thinking we would be moved to a room quickly considering my condition. As it happened, I didn't eat until 9:00p that night and still had to wait until 10:30 for a transport to wheel me up to the room. It was a very long and stressful day and even though I had to be re-admitted to the hospital, I was just glad to be in the safe sanctuary of 11 North.
Food and hydration were the key to my quick recovery and I was able to shower and get into bed around midnight.
Day 36:
After I had settled in my room, I was told my red blood count had dropped from 27 in the clinic to 23. That was probably another reason I had passed out. Around 2:15a, they started transfusing blood and I received two units. The transfusion lasted until about 6:00a and thereby much sleep was not to be had due to the constant testing of vitals.
I was also told I would have the planned endoscopy that day and could not eat or drink after midnight. Eating in the morning was not a problem for me, but having not eaten much the day before, I knew I needed food in my body to feel better. I was also told I wouldn't be released from the hospital until after the scope. Around 2:30 in the afternoon, the EDG people, who had been to see me a million times, it seemed, told me I didn't have enough platelets for the scope and it would have to be pushed back until the next day. Great. First order of business - my mother went to the cafeteria and got me a grilled chicken sandwich and fries. I didn't even care if I should eat something that heavy. I was hungry and needed food. Thankfully, it went down okay and I felt much stronger.
At this time, I had a small mental break down. I believe I had done fairly well mentally with the whole transplant ordeal, but having been admitted to the hospital for the third time, the constant state of my body not functioning and processing food as it should, left me feeling very down. The long days waiting in the hospital to have a simple test done were hard mentally. Not one to cry much, I found myself very weepy and downhearted. I did my best to distract myself from myself for the rest of the day but looking back, I can say that stint in the hospital was not a mentally good one.
Day 37:
I received platelets early in the morning to prepare for the endoscopy and was told it would happen around noon. The transport person finally came to get me around 1:30 and I was wheeled down to the gastrology department. I was put in a bed in a curtain-divided room with several other people to wait my turn. An hour and a half later, my turn was up and I went under sedation for the surgery. I felt no pain or discomfort upon waking from the endoscopy and actually woke up hungry and ready to eat.
Once back in my room, I had to complete the breathing treatment that started the whole mess and it was a fifteen minute procedure wherein I sat on my hospital bed with a sheet of plastic boxed over me and breathed into a mouth piece. My discharge papers were handed to me and I was finally allowed to go home. Thank you, Jesus, was all I can say to that.
My mom and I arrived home and ate dinner, I had a small nap, and then we went to a Hallmark store and Target. I needed to get out and be among the living.
I started a bag of IV fluid that night and noticed I had a weird headache develop at bedtime. Cyclosporine was a 10:00p medicine and I believe it was a combination of that drug and high blood pressure that triggered the headache. During my first hospital stay, my blood pressure always seemed to spike at night. Oxycodone took care of the headache and I was thankful to be able to sleep in a normal bed.
Day: 38
The night brought with it more esophagus pain. Just laying in bed and swallowing would cause a low pain in my esophagus and every time I moved or got up to use the bathroom, the pain would flair up. Knowing it was my stomach still not behaving correctly, I medicated as I was able.
I had clinic that morning at 10:00a and was told the results from my EDG were back and showed only redness in the stomach - no ulcers or evidence of GvHD. The results from my BMX on Sept. 14th were still pending.
Mother and I made a quick trip to Publix - a local grocery store and I spent an easy night at home. My stomach, for whatever reason, decided to feel a million times better and I was able to eat and drink. Not only drink, but drink bottles of water. Before, sips of water would just sit on my stomach and ache but now I could drink larger quantities and it didn't hurt. This was a major improvement as it is impossible to become stronger and healthier if you can't do the most common things in life - eating and drinking.
Day 39:
Felt awful in the morning as was par for the course. I did get out to three different stores that day and could tell it was helping me more mentally to be out and about than it was probably physically. After the excitement from earlier in the week, the last thing I needed to complain about was boredom. But after 39 days of feeling awful and listless, life seemed to be on a hold. Strength and energy were welcomed back anytime.
Day 40:
I spent the morning at the clinic with just a quick check in. Having received blood and platelets the day or two before my counts were good although I was given a few potassium pills to help that level. The evening was spent at home - working on a puzzle and keeping myself distracted from the mundane!
Day 41:
Stayed home all day long and felt miserable. Nauseated and I felt as though my head was fuzzy and full. A very long day spent trying to feel halfway decent. One I would not like to repeat any time soon.
Had a clinic visit at 10:00a and felt sluggish and nauseated the entire time. I skipped doing a bag of IV fluids at home that morning because I knew I wouldn't have time to finish the bag before I had to leave for clinic. I didn't feel dehydrated but after vomiting the previous two days, I'm sure my body needed more fluids. Informed my NP that I still saw 'floaters' in my eyes and that my UTI symptoms had finally started improving. I was still struggling with the need to use the bathroom often but the pain had definitely diminished.
My NP advised we would go ahead with an endoscopy - a scope down my throat to take a look at my stomach. My stomach was aching up a storm and my esophagus was hurting too. I was given a dose of phenagren in clinic because of the persistent nausea and it left me feeling very tired and drowsy. Scheduled after my clinic was a one time breathing treatment to prevent a certain type of pneumonia and another chest x-ray.
After clinic, around 1:00p, I went to have the breathing treatment done and waited and slept in the waiting room for an hour. By the time I was back in the small room for the treatment, I knew I was in trouble. I felt very weak and was sitting down waiting on the respitory technician to start the procedure when I told her I needed a wheelchair and I needed to go home. She stepped out to find a wheelchair and I knew I was about to pass out. There was a small examination table in the room and I made an attempt to climb on it but never made it. I slid down the table in a dead faint and was told later my eyes had rolled back into my head, I had stopped breathing for half a minute, and I had made snoring/gargling noises in my throat. When I came to, I was spread eagle flat on my back with the technician calling my name and trying to get me to wake up. A rapid response team was called and two EMT's were there and started testing all my vitals including my blood sugar. I was eventually put on a stretcher and wheeled to the emergency room. It was around 2:00p.
A flood of nurses and doctors from the ER showed up, of course, to ask questions and check on me. They eventually hooked up a bag of fluids to just get me hydrated. I knew I was going to have to be check back into the hospital on 11 North but it took over eight hours to get processed from the ER to my room. I had not eaten all day because of feeling poorly in the morning. Had we known I would have been waiting in the ER for so long, my mother would have brought me food much earlier, but we kept thinking we would be moved to a room quickly considering my condition. As it happened, I didn't eat until 9:00p that night and still had to wait until 10:30 for a transport to wheel me up to the room. It was a very long and stressful day and even though I had to be re-admitted to the hospital, I was just glad to be in the safe sanctuary of 11 North.
Food and hydration were the key to my quick recovery and I was able to shower and get into bed around midnight.
Day 36:
After I had settled in my room, I was told my red blood count had dropped from 27 in the clinic to 23. That was probably another reason I had passed out. Around 2:15a, they started transfusing blood and I received two units. The transfusion lasted until about 6:00a and thereby much sleep was not to be had due to the constant testing of vitals.
I was also told I would have the planned endoscopy that day and could not eat or drink after midnight. Eating in the morning was not a problem for me, but having not eaten much the day before, I knew I needed food in my body to feel better. I was also told I wouldn't be released from the hospital until after the scope. Around 2:30 in the afternoon, the EDG people, who had been to see me a million times, it seemed, told me I didn't have enough platelets for the scope and it would have to be pushed back until the next day. Great. First order of business - my mother went to the cafeteria and got me a grilled chicken sandwich and fries. I didn't even care if I should eat something that heavy. I was hungry and needed food. Thankfully, it went down okay and I felt much stronger.
At this time, I had a small mental break down. I believe I had done fairly well mentally with the whole transplant ordeal, but having been admitted to the hospital for the third time, the constant state of my body not functioning and processing food as it should, left me feeling very down. The long days waiting in the hospital to have a simple test done were hard mentally. Not one to cry much, I found myself very weepy and downhearted. I did my best to distract myself from myself for the rest of the day but looking back, I can say that stint in the hospital was not a mentally good one.
Day 37:
I received platelets early in the morning to prepare for the endoscopy and was told it would happen around noon. The transport person finally came to get me around 1:30 and I was wheeled down to the gastrology department. I was put in a bed in a curtain-divided room with several other people to wait my turn. An hour and a half later, my turn was up and I went under sedation for the surgery. I felt no pain or discomfort upon waking from the endoscopy and actually woke up hungry and ready to eat.
Once back in my room, I had to complete the breathing treatment that started the whole mess and it was a fifteen minute procedure wherein I sat on my hospital bed with a sheet of plastic boxed over me and breathed into a mouth piece. My discharge papers were handed to me and I was finally allowed to go home. Thank you, Jesus, was all I can say to that.
My mom and I arrived home and ate dinner, I had a small nap, and then we went to a Hallmark store and Target. I needed to get out and be among the living.
I started a bag of IV fluid that night and noticed I had a weird headache develop at bedtime. Cyclosporine was a 10:00p medicine and I believe it was a combination of that drug and high blood pressure that triggered the headache. During my first hospital stay, my blood pressure always seemed to spike at night. Oxycodone took care of the headache and I was thankful to be able to sleep in a normal bed.
Day: 38
The night brought with it more esophagus pain. Just laying in bed and swallowing would cause a low pain in my esophagus and every time I moved or got up to use the bathroom, the pain would flair up. Knowing it was my stomach still not behaving correctly, I medicated as I was able.
I had clinic that morning at 10:00a and was told the results from my EDG were back and showed only redness in the stomach - no ulcers or evidence of GvHD. The results from my BMX on Sept. 14th were still pending.
Mother and I made a quick trip to Publix - a local grocery store and I spent an easy night at home. My stomach, for whatever reason, decided to feel a million times better and I was able to eat and drink. Not only drink, but drink bottles of water. Before, sips of water would just sit on my stomach and ache but now I could drink larger quantities and it didn't hurt. This was a major improvement as it is impossible to become stronger and healthier if you can't do the most common things in life - eating and drinking.
Day 39:
Felt awful in the morning as was par for the course. I did get out to three different stores that day and could tell it was helping me more mentally to be out and about than it was probably physically. After the excitement from earlier in the week, the last thing I needed to complain about was boredom. But after 39 days of feeling awful and listless, life seemed to be on a hold. Strength and energy were welcomed back anytime.
Day 40:
I spent the morning at the clinic with just a quick check in. Having received blood and platelets the day or two before my counts were good although I was given a few potassium pills to help that level. The evening was spent at home - working on a puzzle and keeping myself distracted from the mundane!
Day 41:
Stayed home all day long and felt miserable. Nauseated and I felt as though my head was fuzzy and full. A very long day spent trying to feel halfway decent. One I would not like to repeat any time soon.
Tuesday, September 11, 2012
My Bone Marrow Transplant: Day 28 - 34
Day 28:
Clinic in the morning to check my levels. I was low on magnesium and was given two IV bags while there. My counts were steady but not showing significant growth. WBC 3.4, RBC 35, platelets 34, and my neutrophils were in the 2,000 range. The nurse also sent me home with a new prescription for magnesium. I ended the visit with the mandatory chest x-ray.
Day 29:
I had taken my cyclosporine by accident the day before and I had to go back to the clinic for a quick blood draw to test my levels. Came home and slept until 1:45p and felt pretty blah. I still needed to use the bathroom often and it was annoying and painful. I ached all day and felt as though I had the flu with sore bones and joints.
Day 30:
Stayed home as it was a free day from the clinic and slept all day. I felt better in the evening, as usual, as was able to venture out and go to the grocery store with my mom. I used an electric cart and seemed to handle the outing well. Getting out and about definitely helps with the mental state of mind.
Day 31:
Clinic in the morning to check my counts. The nurse wanted me to stop taking a blood pressure medicine, a liver pill I had been taking, and Reglan - a drug used to help motility of food. I was glad to hear that I could start weaning myself off of some of the drugs. I was given a liter of fluid to help relieve the UTI symptoms as they were still flaring up. It seems each day is a guess on whether or not my bladder wants to behave itself or not. I had my port cleaned and changed as has become the weekly routine. Thankfully, having it has not been a major hassle as I don't even notice it is there half the time. I worried at first that it would be a constant itchy reminder that I had three ports hanging out of my chest, but it has been the least of my worries.
I also informed the nurse that I noticed spots in my vision - little black floating dots. They don't occur all the time but off and on. An eye test was to be scheduled soon to check it out and make sure it was nothing more than all the medication I was on. I was told the medication could affect my vision.
Because I was still having trouble getting fluids down me - water would just sit on my stomach like a rock - the nurse advised me to start getting fluids at home with an IV drip. Walgreen's Home Infusion services would deliver bags of fluid to the apartment and I would simply have to hook a bag up to my port and let it do its thing.
I had a bone marrow biopsy at 1:30p and it was very uneventful. Asking for the full dose of anesthetic is definitely the way to go. The results should show what percentage of donor my marrow had become - how engrafted my transplant was.
Day 32:
Felt pretty well in the morning, a rarity. I tried to help my mom make breakfast but kept getting over heated and had to sit down. I started my first bag of fluids at 10:00a. My dad flew in and surprised my mom for her birthday and it was good to have company around. We had lunch around 2:00p and it felt like I swallowed a rock. My stomach was heavy and ached the rest of the evening, but I did manage to eat a light dinner. The night was miserable as I spent it going to the restroom every 45 minutes to an hour. I really needed the medicine for my bladder to start working.
Day 33:
I woke up early and started another bag of fluids at 6:00 and it finished by 9:30. I figured out how to run the line a little faster that way I wouldn't be dragging around the IV pole every time I had to go to the bathroom. I felt nauseated at 7:00a and took a phenagren but was still feeling poorly at 9:30a. By ten I had vomited up all the food from the day before. I felt weak and drained the rest of the day and stayed home all day. Movement did not help my stomach at all and I wanted to stay as still as possible.
Day 34:
Because of the rough time my stomach had the day before, I skipped breakfast and ate soup for lunch. UTI symptoms improved and I only had to go every two hours instead of hourly. Still felt poorly and weak and by 9:40 that night, I had thrown up the days' food. Food and water were still not my friends.
Clinic in the morning to check my levels. I was low on magnesium and was given two IV bags while there. My counts were steady but not showing significant growth. WBC 3.4, RBC 35, platelets 34, and my neutrophils were in the 2,000 range. The nurse also sent me home with a new prescription for magnesium. I ended the visit with the mandatory chest x-ray.
Day 29:
I had taken my cyclosporine by accident the day before and I had to go back to the clinic for a quick blood draw to test my levels. Came home and slept until 1:45p and felt pretty blah. I still needed to use the bathroom often and it was annoying and painful. I ached all day and felt as though I had the flu with sore bones and joints.
Day 30:
Stayed home as it was a free day from the clinic and slept all day. I felt better in the evening, as usual, as was able to venture out and go to the grocery store with my mom. I used an electric cart and seemed to handle the outing well. Getting out and about definitely helps with the mental state of mind.
Day 31:
Clinic in the morning to check my counts. The nurse wanted me to stop taking a blood pressure medicine, a liver pill I had been taking, and Reglan - a drug used to help motility of food. I was glad to hear that I could start weaning myself off of some of the drugs. I was given a liter of fluid to help relieve the UTI symptoms as they were still flaring up. It seems each day is a guess on whether or not my bladder wants to behave itself or not. I had my port cleaned and changed as has become the weekly routine. Thankfully, having it has not been a major hassle as I don't even notice it is there half the time. I worried at first that it would be a constant itchy reminder that I had three ports hanging out of my chest, but it has been the least of my worries.
I also informed the nurse that I noticed spots in my vision - little black floating dots. They don't occur all the time but off and on. An eye test was to be scheduled soon to check it out and make sure it was nothing more than all the medication I was on. I was told the medication could affect my vision.
Because I was still having trouble getting fluids down me - water would just sit on my stomach like a rock - the nurse advised me to start getting fluids at home with an IV drip. Walgreen's Home Infusion services would deliver bags of fluid to the apartment and I would simply have to hook a bag up to my port and let it do its thing.
I had a bone marrow biopsy at 1:30p and it was very uneventful. Asking for the full dose of anesthetic is definitely the way to go. The results should show what percentage of donor my marrow had become - how engrafted my transplant was.
Day 32:
Felt pretty well in the morning, a rarity. I tried to help my mom make breakfast but kept getting over heated and had to sit down. I started my first bag of fluids at 10:00a. My dad flew in and surprised my mom for her birthday and it was good to have company around. We had lunch around 2:00p and it felt like I swallowed a rock. My stomach was heavy and ached the rest of the evening, but I did manage to eat a light dinner. The night was miserable as I spent it going to the restroom every 45 minutes to an hour. I really needed the medicine for my bladder to start working.
Day 33:
I woke up early and started another bag of fluids at 6:00 and it finished by 9:30. I figured out how to run the line a little faster that way I wouldn't be dragging around the IV pole every time I had to go to the bathroom. I felt nauseated at 7:00a and took a phenagren but was still feeling poorly at 9:30a. By ten I had vomited up all the food from the day before. I felt weak and drained the rest of the day and stayed home all day. Movement did not help my stomach at all and I wanted to stay as still as possible.
Day 34:
Because of the rough time my stomach had the day before, I skipped breakfast and ate soup for lunch. UTI symptoms improved and I only had to go every two hours instead of hourly. Still felt poorly and weak and by 9:40 that night, I had thrown up the days' food. Food and water were still not my friends.
Tuesday, September 4, 2012
My Bone Marrow Transplant: Day 21-27
(My days are less eventful so I will be posting a week's worth of posts at a time)
Day 21:
Woke up feeling very weak and tired. I met with the doctors and they decided to do more to get my bowels to move. They also ordered a x-ray to make sure GvHD or any type of blockage wasn't interfering. During the x-ray, I became very light headed and started to black out. Once back in my room, my nurse took my blood pressure and I was orthostatic - suffering from low blood pressure. They gave me a full bag of IV fluid and I immediately felt much better. I was simply dehydrated. Eventually, my bowels kicked in and I was so thankful. The nurse had threatened a suppository. No thanks!
My mouth is almost completely healed and my stomach feels a lot better. Fluids were increased that night and I spent a restless night going to the bathroom often.
Day 22:
Received platelets in the morning because my counts had dipped a bit - down to 17. WBC was 1.1 and my neutrophils were .500. I was told it was normal for counts to dip and that it should be expected. My stomach started behaving again and it feels almost normal. If all goes well, I'll get to go home tomorrow. A week after having been re-admitted, I was a bit apprehensive. There was security in having the nurses and medicines at instant disposal.
I was switched back to the the pill form of cyclosporine in preparation for my return trip home. I felt well enough to walk for half an hour. Around 8:00, I noticed a rash turned up on my arms but had dissipated by 9:30. The nurse was also concerned that my blood pressure had went up. It seems to go up in the evening hours.
Day 23:
Discharged today with news that my counts had recovered a bit. They were high enough that I didn't need to have blood product. Made it to the apartment around 1:00p and and snuck in a nap. Made my first trip to a store in almost a month that evening and it felt good to get out among people. My stomach is still achey and not back to full working order but I felt a hundred times better than the week before when I was released.
Day 24:
Spent the evening before in a real bed even though sleep was difficult. I spent the night going to the bathroom and had a sneaky suspicion I had developed a bladder infection of some type.
My first clinic appointment was today and I had to be there at 8:00a for a blood draw and to check my cyclosporine levels. I didn't need any blood products but I did need magnesium and it was administered through an IV over an hour. My first visit to the clinic was what I expected; a long wait. I informed the nurse practitioner of my constant need to use the restroom and they gave me a prescription to help treat the symptoms. The urine sample I had given to test for infection would take several days before results would be available but I was so uncomfortable I needed something to help me cope until they could get a diagnosis. I also had to have another chest x-ray. No big deal there.
After the clinic, I met with a lady that offered a free wig and tried several wigs on. I choose to be a brunette!
Day 25:
Today was my first full day at home and it felt good to not have to go to a hospital. The mornings are usually spent nauseated but I felt better around 1:00p. My symptoms of a UTI worsened around 7:00p and I was fully miserable. A call was made to the after hours clinic to see if I could take another pill to help the symptoms but was advised I was already taking a high dose. The doctor on-call advised a take oxycodone to help with the pain.
Day 26:
Woke up extremely nauseated and ended up vomiting my early morning medications by 8:30a and my dinner from the night before. I was so hoping my stomach would have corrected itself but apparently it had not.
I arrived early at the clinic and was told my counts had really jumped. WBC 2.3, RBC 35, Platelets 25, and my neutrophils were in the thousands. I did not need blood products but I did need more magnesium. Cyclosporine is known to lower magnesium levels and the low level left me feeling like I had flu-like aches in my bones.
My urine sample came back negative for an infection but I was still in misery so I was also given another prescription for my UTI symptoms. The nurse practitioner believed I had what is known as the BK virus. The RX they gave me wasn't a cure for the virus but was the only go-to medicine to treat the symptoms. I was told only time and higher WBC counts were cure it. The agony.
Day 27:
No clinic visit today and I spent most of the day praying the drugs would help my UTI symptoms and sleeping.
Day 21:
Woke up feeling very weak and tired. I met with the doctors and they decided to do more to get my bowels to move. They also ordered a x-ray to make sure GvHD or any type of blockage wasn't interfering. During the x-ray, I became very light headed and started to black out. Once back in my room, my nurse took my blood pressure and I was orthostatic - suffering from low blood pressure. They gave me a full bag of IV fluid and I immediately felt much better. I was simply dehydrated. Eventually, my bowels kicked in and I was so thankful. The nurse had threatened a suppository. No thanks!
My mouth is almost completely healed and my stomach feels a lot better. Fluids were increased that night and I spent a restless night going to the bathroom often.
Day 22:
Received platelets in the morning because my counts had dipped a bit - down to 17. WBC was 1.1 and my neutrophils were .500. I was told it was normal for counts to dip and that it should be expected. My stomach started behaving again and it feels almost normal. If all goes well, I'll get to go home tomorrow. A week after having been re-admitted, I was a bit apprehensive. There was security in having the nurses and medicines at instant disposal.
I was switched back to the the pill form of cyclosporine in preparation for my return trip home. I felt well enough to walk for half an hour. Around 8:00, I noticed a rash turned up on my arms but had dissipated by 9:30. The nurse was also concerned that my blood pressure had went up. It seems to go up in the evening hours.
Day 23:
Discharged today with news that my counts had recovered a bit. They were high enough that I didn't need to have blood product. Made it to the apartment around 1:00p and and snuck in a nap. Made my first trip to a store in almost a month that evening and it felt good to get out among people. My stomach is still achey and not back to full working order but I felt a hundred times better than the week before when I was released.
Day 24:
Spent the evening before in a real bed even though sleep was difficult. I spent the night going to the bathroom and had a sneaky suspicion I had developed a bladder infection of some type.
My first clinic appointment was today and I had to be there at 8:00a for a blood draw and to check my cyclosporine levels. I didn't need any blood products but I did need magnesium and it was administered through an IV over an hour. My first visit to the clinic was what I expected; a long wait. I informed the nurse practitioner of my constant need to use the restroom and they gave me a prescription to help treat the symptoms. The urine sample I had given to test for infection would take several days before results would be available but I was so uncomfortable I needed something to help me cope until they could get a diagnosis. I also had to have another chest x-ray. No big deal there.
After the clinic, I met with a lady that offered a free wig and tried several wigs on. I choose to be a brunette!
Day 25:
Today was my first full day at home and it felt good to not have to go to a hospital. The mornings are usually spent nauseated but I felt better around 1:00p. My symptoms of a UTI worsened around 7:00p and I was fully miserable. A call was made to the after hours clinic to see if I could take another pill to help the symptoms but was advised I was already taking a high dose. The doctor on-call advised a take oxycodone to help with the pain.
Day 26:
Woke up extremely nauseated and ended up vomiting my early morning medications by 8:30a and my dinner from the night before. I was so hoping my stomach would have corrected itself but apparently it had not.
I arrived early at the clinic and was told my counts had really jumped. WBC 2.3, RBC 35, Platelets 25, and my neutrophils were in the thousands. I did not need blood products but I did need more magnesium. Cyclosporine is known to lower magnesium levels and the low level left me feeling like I had flu-like aches in my bones.
My urine sample came back negative for an infection but I was still in misery so I was also given another prescription for my UTI symptoms. The nurse practitioner believed I had what is known as the BK virus. The RX they gave me wasn't a cure for the virus but was the only go-to medicine to treat the symptoms. I was told only time and higher WBC counts were cure it. The agony.
Day 27:
No clinic visit today and I spent most of the day praying the drugs would help my UTI symptoms and sleeping.
Monday, September 3, 2012
My Bone Marrow Transplant: Day 20
I slept fairly well that night in spite of having to go to the bathroom often. A headache greeted me in the morning and I was given oxycodone to subdue it.
I was able to eat most of my breakfast and was hoping at least something on my stomach would get it to working. My counts were excellent that morning: WBC 1.2 and neutrophils .390. Those two numbers indicate my ability to fight off infection and I was happy to see they were increasing so quickly.
I vomited three times that day. Mostly bile but also blood one time. My stomach was not a happy camper and I felt miserable. I was nauseated all day long and any type of movement seemed to trigger vomiting. The plan for the rest of the day was to just not move.
I was able to eat most of my breakfast and was hoping at least something on my stomach would get it to working. My counts were excellent that morning: WBC 1.2 and neutrophils .390. Those two numbers indicate my ability to fight off infection and I was happy to see they were increasing so quickly.
I vomited three times that day. Mostly bile but also blood one time. My stomach was not a happy camper and I felt miserable. I was nauseated all day long and any type of movement seemed to trigger vomiting. The plan for the rest of the day was to just not move.
Sunday, September 2, 2012
My Bone Marrow Transplant: Day 19
Headache developed around midnight due to the cyclosporine and I was given drugs for treatment. My lab results came back early and I needed to receive a blood transfusion; the premeds given to me helped me get a few hours of sleep.
My mouth felt much better and was only slightly swollen. The rash was almost gone and did not itch.
The doctor's visit that morning was mainly about getting my stomach to wake up and start functioning better. My stomach and bowels were at a stalemate. They were also concerned that the cyclosporine was increasing my blood pressure so they started me on a new medication.
I noticed around 9:45p a rash on my arm had developed that was different than any rash I had before as was lower and on the inside of my arms. The nurse decided we would watch it through the night and it was gone by morning.
My mouth felt much better and was only slightly swollen. The rash was almost gone and did not itch.
The doctor's visit that morning was mainly about getting my stomach to wake up and start functioning better. My stomach and bowels were at a stalemate. They were also concerned that the cyclosporine was increasing my blood pressure so they started me on a new medication.
I noticed around 9:45p a rash on my arm had developed that was different than any rash I had before as was lower and on the inside of my arms. The nurse decided we would watch it through the night and it was gone by morning.
Saturday, September 1, 2012
My Bone Marrow Transplant: Day 18
Around 12:20a I called the nurse in for a round of morphine for a persistant headache. I also noticed the lower parts of my arms had started to itch. Benadryl was administered and I slept well until 3:45a when I awoke and noticed my arms were still itching. A topical lotion, Sarna, was given to relieve the itch. It worked.
About the same time, a nurse came into hang a bag of magnesium and told me that my WBC had jumped from .3 to .5 and my neutrophils were .27, a major jump from .14 the day before. My platelet counts were only 15 so I got an infusion around 8:00 and ended up sleeping until after noon due to the premeds.
I was able to eat breakfast and lunch but not dinner. My stomach was still unsettled and felt heavy. My rash from the day before had stopped itching and I noticed my mouth was not as swollen. Ended the night with a cyclosporine headache.
About the same time, a nurse came into hang a bag of magnesium and told me that my WBC had jumped from .3 to .5 and my neutrophils were .27, a major jump from .14 the day before. My platelet counts were only 15 so I got an infusion around 8:00 and ended up sleeping until after noon due to the premeds.
I was able to eat breakfast and lunch but not dinner. My stomach was still unsettled and felt heavy. My rash from the day before had stopped itching and I noticed my mouth was not as swollen. Ended the night with a cyclosporine headache.
Friday, August 31, 2012
My Bone Marrow Transplant: Day 17
The late night from before ran into the early morning of Day 17. I had just settled down into bed around 1:00a to try and get some rest when a transport orderly came to my room to wheel me down to have a chest x-ray. After the horrible day and night I had had, the last thing I wanted to do was be in an upright position and take a stroll through the dark hospital. I also had to give a urine sample and blood cultures were taken from my port.
Twenty minutes later I was back in my room and my nurse came in to start the cyclosporine dose I had thrown up earlier. It ran from 1:30a-5:30. I slept in that morning until the doctors arrived and informed them that my rash had spread. They decided to go ahead and treat my rash as GvHD and I eventually received steroids - the go to treatment for GvHD.
I slept most of the day and was given a food supplement drink, Enlive by Ensure, to help balance my inability to hold food down. By evening, I felt much better and was able to walk laps.
My mouth was still slightly swollen but the nausea had passed. My eyes became very dry and itchy but saline drops helped them feel better.
More Enlive for dinner and oxycodone for a headache. Around 10:20p I was given methelpredalisone for the treatment of GvHD. More oxycodone and a melatonin to help me sleep. I was never so glad to be back in the hospital with quick access to medications.
Twenty minutes later I was back in my room and my nurse came in to start the cyclosporine dose I had thrown up earlier. It ran from 1:30a-5:30. I slept in that morning until the doctors arrived and informed them that my rash had spread. They decided to go ahead and treat my rash as GvHD and I eventually received steroids - the go to treatment for GvHD.
I slept most of the day and was given a food supplement drink, Enlive by Ensure, to help balance my inability to hold food down. By evening, I felt much better and was able to walk laps.
My mouth was still slightly swollen but the nausea had passed. My eyes became very dry and itchy but saline drops helped them feel better.
More Enlive for dinner and oxycodone for a headache. Around 10:20p I was given methelpredalisone for the treatment of GvHD. More oxycodone and a melatonin to help me sleep. I was never so glad to be back in the hospital with quick access to medications.
Thursday, August 30, 2012
My Bone Marrow Transplant: Day 16
Woke up feeling well and after meeting with the doctors they decided that I could be released from the hospital to go live in the nearby apartment. Yes! I spent the rest of the morning packing up my things.
My mouth was still sore and my gums still swollen up over my teeth. My throat had become very dry and I found it hard to swallow.
A representative from the Vanderbilt pharmacy came to my room to show me how to administer IV infusions to myself while at the apartment. Two drugs, Vancomycin and Micafungin had to still be administered into my port and she showed me how to clean my 'hubs' with alcohol first before attaching the tubing. 'Scrubbing the hub' for fifteen seconds helped to remove potential opportunities to get an infection. I also had to flush the line with saline and once the transfusion was complete fill the hub with Heprin - a solution used to prevent clots in the hub. I got the feeling I would be my own mini-nurse and it was a tad stressful. I was tired during the entire explanation and just thought I needed to get a good nap in. It was not to happen.
When I finally arrived at the apartment around 4:00p my dogs were happy to see me but I soon realized I did not have the energy I needed to be around them. I spent most of the evening getting in and out of bed trying to feel better. The shakes came back in full force and my stomach cramped with nausea.
I made myself take a bath around 9:00p and noticed the rash on my arms had spread to my trunk, back and down my thighs. I started the antibiotic Vancomycin procedure at 9:30 and premedicated for the cyclosporine I would have to take at 10:00p. When 10:00p rolled around my pills were so many and so large, I had to drink a bunch of water to get them down. Less than a minute after swallowing them all, I threw everything up I had eaten that day; peaches from the morning and the undissolved pills I had just swallowed. A combination of the spreading rash, the vomiting, the shakes, and just simply feeling awful led me to decide we definitely needed to call the doctor. It was quickly decided by the on-call physician that I needed to return to the hospital. Only six hours of freedom before I was admitted again to the hospital. When I got to my new room, I noticed an awful bug had made its way into my space. I had to wait half an hour in a small family room for them to completely clean the new room again. Misery knew no end that night. It was awful. And it wasn't over.
When I finally arrived at the apartment around 4:00p my dogs were happy to see me but I soon realized I did not have the energy I needed to be around them. I spent most of the evening getting in and out of bed trying to feel better. The shakes came back in full force and my stomach cramped with nausea.
I made myself take a bath around 9:00p and noticed the rash on my arms had spread to my trunk, back and down my thighs. I started the antibiotic Vancomycin procedure at 9:30 and premedicated for the cyclosporine I would have to take at 10:00p. When 10:00p rolled around my pills were so many and so large, I had to drink a bunch of water to get them down. Less than a minute after swallowing them all, I threw everything up I had eaten that day; peaches from the morning and the undissolved pills I had just swallowed. A combination of the spreading rash, the vomiting, the shakes, and just simply feeling awful led me to decide we definitely needed to call the doctor. It was quickly decided by the on-call physician that I needed to return to the hospital. Only six hours of freedom before I was admitted again to the hospital. When I got to my new room, I noticed an awful bug had made its way into my space. I had to wait half an hour in a small family room for them to completely clean the new room again. Misery knew no end that night. It was awful. And it wasn't over.
Wednesday, August 29, 2012
My Bone Marrow Transplant: Day 15
Struggled to wake up the entire day and slept until around 2:00p. The drowsiness was most likely a layover from the drugs administered the previous night for body aches and a headache. The body aches felt like the ones you have when you get the flu. I had no strength to do anything and even simply walking the halls hurt.
My blood counts have become the highlight of my mornings. WBC was .2 today and that means they are actually moving in the right direction - up.
Still felt tired and nauseated and highly doubted I would be going home today. I was able to eat breakfast, lunch, and dinner in spite of vomiting the day before. I knew I needed to keep trying to get my stomach to behave if I were to be released by Thursday.
The afternoon was better for me and I was able to shower and do my walking laps around the floor. The evening finished with me turning in early for a good night's sleep.
My blood counts have become the highlight of my mornings. WBC was .2 today and that means they are actually moving in the right direction - up.
Still felt tired and nauseated and highly doubted I would be going home today. I was able to eat breakfast, lunch, and dinner in spite of vomiting the day before. I knew I needed to keep trying to get my stomach to behave if I were to be released by Thursday.
The afternoon was better for me and I was able to shower and do my walking laps around the floor. The evening finished with me turning in early for a good night's sleep.
Tuesday, August 28, 2012
My Bone Marrow Transplant: Day 14
Felt nauseated all morning and stayed in bed. I was able to eat a small breakfast of peaches but by 12:45, I had thrown those up too. It appeared my gut was suffering from the mucositis and was still 'asleep'. Water felt heavy to drink and food felt even worse. My stomach would cramp and ache. Oddly enough my bowels were dead quiet. Nothing moved or made a noise below my stomach.
The day passed with me mostly in bed because they hit me with nausea medicine that put me to sleep. The shakes returned that night and I spent the night warm to the touch and flushed but shaking on the inside. My body had been brought to its lowest and just needed time to recover. Rest was the only answer.
The day passed with me mostly in bed because they hit me with nausea medicine that put me to sleep. The shakes returned that night and I spent the night warm to the touch and flushed but shaking on the inside. My body had been brought to its lowest and just needed time to recover. Rest was the only answer.
Monday, August 27, 2012
My Bone Marrow Transplant: Day 13
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.27.12 DAY: 13
MOOD: Good!
MENTAL STATE: Feeling much clearer headed today.
PHYSICAL STATE: Best I've felt in days.
Slept a decent night's rest and was awoke at 7:45a by the nurse practitioner making rounds. Felt better today than I have in days and my body no longer aches. The attending doctor brought with him good news. My white blood count (WBC) had been showing up on the report as <.01 which means the counts were not even registering. This morning my count was .01. Although low, it's a definite sign that I could have started engraftment. Great news to receive...and as soon as day 13?!
I needed platelets that morning too so the nurse started them around 8:00a and ran them slow as to prevent another reaction. They finished around 9:30a and I felt fine.
My mother showed up around 9:45a and we spent nearly 3 hours trying to get paperwork caught up. The Leukemia and Lymphoma Society offers financial assistance for patients diagnosed with a wide variety of blood cancers. My disease, aplastic anemia, falls under myelodysplastic syndrome (MDS) and qualifies me for assistance with my insurance co-pays and prescription reimbursement up to $5,000 a yar. A truly wonderful benefit to help financially, however the paperwork must always be completed once a year. If you or anyone know sees an oncologist or hematologist for a blood disorder, I would strongly suggest a visit to the LLS website. They are also very friendly to speak with on the phone. A transplant patient who receives an matched unrelated donor (MUD) is also eligible for a $1,000 grant from National Marrow Donor Program (NMDP) and I applied for that too.
Grabbed a name around 1:00p and worked on the blog for awhile. Also did some stretching exercises hoping to start the regeneration process of the muscle mass that's been lost.
Sunday, August 26, 2012
My Bone Marrow Transplant: Day 12
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.26.12 DAY: 12
MOOD: Very mellow and subdued.
MENTAL STATE: Fuzzy and disoriented
PHYSICAL STATE: In a haze from all the pain medications from the night before.
Started the morning early with a chest x-ray in bed. A technician wheeled in a portable x-ray machine, had me lay on the film, and aimed a camera over my chest to take the x-ray. The whole process took about 5 minutes, but with my head still aching it was a very long five minutes.
Woke up around 4:30a to get my nightly weigh-in and vitals. The nurse brought some night medications, one which was chew-able, and I had just chewed it up when my stomach revolted and I vomited up the few contents remaining in my stomach. Once I settled back down in bed, I asked for more morphine as my head was still killing me.
The morning shift awoke me with news that I would need to receive blood so I was once again premedicated with steroids, Tylenol, and Benadryl. Because of all the hardcore medicine for my headache and the pre meds for the blood, I was in a state of complete oblivion until about 2:00p. I could not shake myself from the haze and kept falling asleep.
Early in the afternoon I noticed my body ached everywhere and it felt as though I had the flu. My temperature rose a little to 99.3 and I hoped my fever would not return. My husband was still in town and helped me walk a few minutes in the hall but my body truly ached and the last thing I wanted to do was move.
I was still not attempting food or water as the mucositis was still riled up. My gum line was completely swollen and I had started to produce the white foam/spit again in my mouth.
Besides the fact that food would hurt to be chewed and swallowed, I could tell my gut was not in a "plays nice with others" kind of mood, so I didn't want to push it.
I headed for bed around 7:30p and noticed I didn't get the normal chills I usually have around that time of night. The eighty degree room temperature and four blankets I had covering me I'm sure also helped. I started cyclosporine a little earlier than usual but also took oxycodone for my headache. A small headache was brewing and I wasn't about to let it get out of control like the night before.
The evening passed relatively smoothly, no new fever, headache under control, and a good night's rest.
DATE: 8.26.12 DAY: 12
MOOD: Very mellow and subdued.
MENTAL STATE: Fuzzy and disoriented
PHYSICAL STATE: In a haze from all the pain medications from the night before.
Started the morning early with a chest x-ray in bed. A technician wheeled in a portable x-ray machine, had me lay on the film, and aimed a camera over my chest to take the x-ray. The whole process took about 5 minutes, but with my head still aching it was a very long five minutes.
Woke up around 4:30a to get my nightly weigh-in and vitals. The nurse brought some night medications, one which was chew-able, and I had just chewed it up when my stomach revolted and I vomited up the few contents remaining in my stomach. Once I settled back down in bed, I asked for more morphine as my head was still killing me.
The morning shift awoke me with news that I would need to receive blood so I was once again premedicated with steroids, Tylenol, and Benadryl. Because of all the hardcore medicine for my headache and the pre meds for the blood, I was in a state of complete oblivion until about 2:00p. I could not shake myself from the haze and kept falling asleep.
Early in the afternoon I noticed my body ached everywhere and it felt as though I had the flu. My temperature rose a little to 99.3 and I hoped my fever would not return. My husband was still in town and helped me walk a few minutes in the hall but my body truly ached and the last thing I wanted to do was move.
I was still not attempting food or water as the mucositis was still riled up. My gum line was completely swollen and I had started to produce the white foam/spit again in my mouth.
Besides the fact that food would hurt to be chewed and swallowed, I could tell my gut was not in a "plays nice with others" kind of mood, so I didn't want to push it.
I headed for bed around 7:30p and noticed I didn't get the normal chills I usually have around that time of night. The eighty degree room temperature and four blankets I had covering me I'm sure also helped. I started cyclosporine a little earlier than usual but also took oxycodone for my headache. A small headache was brewing and I wasn't about to let it get out of control like the night before.
The evening passed relatively smoothly, no new fever, headache under control, and a good night's rest.
Saturday, August 25, 2012
My Bone Marrow Transplant: Day 11
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.25.12 DAY: 11
MOOD: Despondent.
MENTAL STATE: Looking for the light at the end of the tunnel.
PHYSICAL STATE: Weak and nauseated.
Day 11 brought with it the usual crummy feeling that I had been experiencing in the previous days. I was told I would receive platelets around 10:00a and be pre-medicated around 9:30a. So, I decided to brush my teeth and wash my face before that got started. As I finished brushing my teeth I began to puke up green bile. A lot of green bile. Apparently my stomach had been holding onto it's contents for awhile because I had not been eating or drinking anything due to the mucositis. Once back in bed I slept til 11:00a at which time they gave me a steroid premed which seemed to cause my entire jaw to swell and ache. I also developed a very bad headache. The nurse gave me 1mg of morphine and when that didn't help she gave me two more, being careful to administer slowly as morphine can cause nausea.
I ended up staying in bed until about 3:00p and was just feeling better when my husband surprised me with his visit. He was not scheduled to come in until Sunday, but I was glad he showed up early. Feeling so much better he walked laps with me in the hall and surprisingly I was able to walk almost 30 minutes!
At 6:00p I was given my last dose of chemotherapy, methotrexate. Thankfully it's side effects wouldn't be felt until later in the evening when I noticed my gums had swollen again and I had thick mucus. At shift change, around 7:30p, my head started to hurt and I asked for 2 oxycodone to be given with the start of my cyclosporine. An hour and a half later my headache had increased and they tried a mixture of Benadryl and and another drug to ease my headache. But it did not work. Chills had started up again and I would shake violently anytime I got out of bed to use the restroom. The chills did not help my headache, but rather made it worse. I was given 2mg of morphine and around 11:00p that night I noticed I felt very hot even though I was still having chills The nurse took my temperature and I had a 100.6 fever which meant I had to undergo a protocol for patients that develop a fever. Blood cultures were taken, I was started on antibiotics, gave a urine sample, and at about 1:30a the next morning an x-ray technician came and did a chest x-ray. About that time my headache was still present so I was given another 2mg of morphine. It was a very long and painful evening.
Wednesday, August 22, 2012
My Bone Marrow Transplant: Day 8-10
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.22.12-8.24.12 DAY: 8-10
MOOD: Miserable.
MENTAL STATE: Tire of being in the hospital.
PHYSICAL STATE: Very weak. Muscle aches.
I decided to combine these three days because they passed in generally the same manner. I woke up each day feeling very drained and physically tired and pretty much rotten. My stomach was nauseated, my body ached, and it seemed as though I had no energy whatsoever.
Every afternoon, however, I felt better. It was as though it took me until 2-3 in the afternoon for my body to snap out of it. I had eaten part of a blueberry muffin on day 8 and paid for it in painful stomach cramps on days 9 and 10. The mucositis was even more painful now that it was down in my gut.
The evenings were filled with restless sleep and more body aches. It felt as though I had the flu. Day 10 seem to be the longest day in the hospital I've experienced. It never wanted to end. Having felt so poorly I was unable to focus on a computer and did not feel like writing. The doctors believed this was the natural slump of the transplant and that in a week's time I should feel much better, especially after engraftment.
Tuesday, August 21, 2012
My Bone Marrow Transplant: Day 7
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.21.12 DAY: 7
MOOD: I could sleep forever.
MENTAL STATE: Hard to focus on anything when I keep falling asleep.
PHYSICAL STATE: Feel utterly drained and lifeless.
The early morning brought with it a steady headache that was medicated twice during the night with a double dose of oxycodone. Sleep was minimal and illusive - it's pretty bad when oxycodone can't put me in a sleep coma.
I was given Lasix (the 'make-you-gotta-pee' medicine) around 7:30a and it kicked in around 7:35a. I had just swallowed some pills with a few drinks of water and was making my way to the bathroom when my stomach decided to rebel. I was in the bathroom faced with the decision of whether to pee or puke. FYI - that is a stressful situation to be. I chose wisely and threw up first and said hello to the little pill I just swallowed. I hurried up and relieved my self and got back in bed feeling shaky. A second round of vomiting finished off the contents of my stomach and I could not for the life of me figure out why my stomach did not want to behave today.
Once back in the bed, the nurse pumped me full of a nausea medicine that is also known to make you drowsy. My body felt very weak and I ended up staying in bed until two in the afternoon, a first for me. A nurse practitioner came to check on me and offered me blood to help me feel better and I agreed. One unit of blood instead of the normal two was ordered up but wasn't cross-typed and delivered until close to 5:00p. I sat up for two and a half hours that afternoon but once they came to give me pre-meds for the blood, I went back to bed and stayed there all evening. No reaction to the blood product and my stomach felt much more settled.
My hair was coming out in small handfuls and my scalp was also hurting again. My research in donating my hair had left me disappointed. Locks of Love seemed to be a bit of a scheme and Pantene's Beautiful Length's program seemed a great alternative however to donate hair, the hair color had to be at least 95% colored and 5% gray. Anyone who knows me, knows my hair was about 50-50 with those percentages.
Finished the evening with a small amount of peaches and pudding on my stomach. Felt much better since I received blood. The doctors said this was about the time when I may need blood on a daily or every other day basis. My own blood was dying off and until engraftment, I would need blood products to get me through. As long as I don't have reactions and they keep making me feel better, bring it on.
Monday, August 20, 2012
My Bone Marrow Transplant: Day 6
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.20.12 DAY: 6
MOOD: I'm going to make it.
MENTAL STATE: Optimistic
PHYSICAL STATE: Stomach is settled, muscles are coming alive again as my walking has increased.
Started the day trying to wake up. A daily ritual had developed that I'd learned to sleep around. Around 7:30a, a nurse practitioner would come in and check on me and get a summary of what to pass along to the doctors later. Around 8:00a, my day nurse would come in and start my cyclosporine and give me any other meds scheduled. After the nurse left, a waiting game began for the arrival of the doctor, his fellow, the charge nurse, and the NP who checked on me earlier. Trying to stay awake between all the visitors in the morning had proven to be difficult for me. Sleeping through the night is impossible in a hospital due to the nightly administering of medications and the taking of vitals every four hours.
My hair had stopped hurting as bad so I was able to give it a good wash - again, not an easy task while trying to keep the dressing around my port dry. Once showered and dressed, my mother and I walked at a much quicker pace than I had been walking for about twenty minutes. I surprised myself with how fast I felt like walking and then how at the twenty minute mark I was out of breath and ready to stop. Once back in the room, my mother fixed me a serving of instant mashed potatoes that could be microwaved. They tasted like heaven; I just love mashed potatoes, instant or not. I ate half a cup of potatoes and made myself stop eating. The last thing I wanted to do was put too much on my stomach, but the potatoes settled well and I was excited that real food was in my near future.
My platelet count had dropped to 14, a dangerously low level, and I was given pre-meds of Tylenol, steroids, and Benadryl before a bag of platelets were transfused. I settled in for the inevitable nap that would accompany the Benadryl and thankfully the platelets behaved themselves and I did not have a reaction.
My mother joined me again in the evening and we walked for another twenty minutes. I felt a million times better although my mouth was still a train wreck. I managed to eat some peaches that night and my stomach stayed calm.
Sunday, August 19, 2012
My Bone Marrow Transplant: Day 5
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.19.12 DAY: 5
MOOD: Everyone lives today!
MENTAL STATE: Yesterday's great day helped today start off with a good mental state.
PHYSICAL STATE: Nausea free and feeling well, but I can really feel the weakened state of my body. Chemo kicks hiney.
The morning started out great and I ended up napping three times before 10:00a. Sunday was definitely the day of rest.
Around 10:30, right after my mother came for her morning visit, an orderly showed up at my door to wheel me down for x-rays. I was not aware until today that, each Sunday, all transplant patients are to have a chest x-ray just to keep an eye on our lungs. The ride down was quick and the chest x-ray was status quo: stand in front of a small white board, roll your shoulders forward, take in a big breath for the camera, then turn sideways, grab a hold of a pole above your head, and take in another breath. The orderly who wheeled me back to my room must have a race car driver's blood because she whipped me around like Mario Andretti. Had I still been suffering from nausea, she would have had to stop and let me heave.
I felt well enough to walk with my mother for twenty minutes that morning. Counting laps has been more of a chore than a help; it's easier to keep track of how long I walk than how far I walk.
Felt great the entire evening and ventured out to eat a serving of peaches. They were delicious! They stayed in my stomach and I never felt nauseated. I think my gut may have rested enough to stay settled and I've already planned to eat mashed potatoes tomorrow.
I attempted to run a comb through my hair and had to stop. My hair HURT. If hair can hurt, that is. The follicles ached liked crazy and I decided a tangled mess of hair was more manageable than the pain of coming it out. I slapped my hair in a bun and stayed away from mirrors. "Do what you have to do to make it through."
I walked for another twenty minutes that evening and ended the evening having to take two oxycodone pills for the headache that flared up from my nightly dose of cyclosporine.
DATE: 8.19.12 DAY: 5
MOOD: Everyone lives today!
MENTAL STATE: Yesterday's great day helped today start off with a good mental state.
PHYSICAL STATE: Nausea free and feeling well, but I can really feel the weakened state of my body. Chemo kicks hiney.
The morning started out great and I ended up napping three times before 10:00a. Sunday was definitely the day of rest.
Around 10:30, right after my mother came for her morning visit, an orderly showed up at my door to wheel me down for x-rays. I was not aware until today that, each Sunday, all transplant patients are to have a chest x-ray just to keep an eye on our lungs. The ride down was quick and the chest x-ray was status quo: stand in front of a small white board, roll your shoulders forward, take in a big breath for the camera, then turn sideways, grab a hold of a pole above your head, and take in another breath. The orderly who wheeled me back to my room must have a race car driver's blood because she whipped me around like Mario Andretti. Had I still been suffering from nausea, she would have had to stop and let me heave.
I felt well enough to walk with my mother for twenty minutes that morning. Counting laps has been more of a chore than a help; it's easier to keep track of how long I walk than how far I walk.
Felt great the entire evening and ventured out to eat a serving of peaches. They were delicious! They stayed in my stomach and I never felt nauseated. I think my gut may have rested enough to stay settled and I've already planned to eat mashed potatoes tomorrow.
I attempted to run a comb through my hair and had to stop. My hair HURT. If hair can hurt, that is. The follicles ached liked crazy and I decided a tangled mess of hair was more manageable than the pain of coming it out. I slapped my hair in a bun and stayed away from mirrors. "Do what you have to do to make it through."
I walked for another twenty minutes that evening and ended the evening having to take two oxycodone pills for the headache that flared up from my nightly dose of cyclosporine.
Saturday, August 18, 2012
My Bone Marrow Transplant: Day 4
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.18.12 DAY: 4
MOOD: Life is good.
MENTAL STATE: Improving!
PHYSICAL STATE: Felt great, all day - no nausea!
I awoke this morning with a calm stomach and a good feeling in my body. All the prayers that had been prayed for my nausea kicked in and I truly believe the prayers helped my body take a turn for the better.
My platelet count was low so I was given a bag of platelets around 9:00a. Platelets are usually pushed through the pump in a thirty minute time span and although my vitals were taken twice, my body delayed in reacting to the platelets until five minutes after they were finished. A bright red splotchy rash began on my arms and before I knew it, my body was covered in what looked like a bright sunburn. Thankfully, it did not itch! I was given a round of steroids to combat the reaction and applied a topical steroid cream to the rash. It took about three hours before my skin returned to normal.
The nurses hooked me up with a suction contraption which enabled me to spit out the white foam nastiness the mucositis was producing in my mouth instead of swallowing it to just sit on my stomach. The suction tube/mouth piece was similar to what you would find in a dentist's office. And yes, it's as nasty as it sounds, but it did help my stomach stay settled all day. Apparently a completely empty stomach was beneficial.
The dressing over my port was changed and that made me feel much better. Trying to keep the dressing dry while showering has become my daily challenge.
Today I noticed my hair follicles were aching a bit; a sign that my hair will probably fall out within a week or two.
Today I felt 100% better than yesterday. No nausea to speak of and I didn't dry-heave at all. Yes! I was able to walk seven laps in the evening and had a very calm night other then a midnight cyclosporine headache. Two oxycodone pills took care of the headache and, of course, helped me get in a good night's rest.
DATE: 8.18.12 DAY: 4
MOOD: Life is good.
MENTAL STATE: Improving!
PHYSICAL STATE: Felt great, all day - no nausea!
I awoke this morning with a calm stomach and a good feeling in my body. All the prayers that had been prayed for my nausea kicked in and I truly believe the prayers helped my body take a turn for the better.
My platelet count was low so I was given a bag of platelets around 9:00a. Platelets are usually pushed through the pump in a thirty minute time span and although my vitals were taken twice, my body delayed in reacting to the platelets until five minutes after they were finished. A bright red splotchy rash began on my arms and before I knew it, my body was covered in what looked like a bright sunburn. Thankfully, it did not itch! I was given a round of steroids to combat the reaction and applied a topical steroid cream to the rash. It took about three hours before my skin returned to normal.
The nurses hooked me up with a suction contraption which enabled me to spit out the white foam nastiness the mucositis was producing in my mouth instead of swallowing it to just sit on my stomach. The suction tube/mouth piece was similar to what you would find in a dentist's office. And yes, it's as nasty as it sounds, but it did help my stomach stay settled all day. Apparently a completely empty stomach was beneficial.
The dressing over my port was changed and that made me feel much better. Trying to keep the dressing dry while showering has become my daily challenge.
Today I noticed my hair follicles were aching a bit; a sign that my hair will probably fall out within a week or two.
Today I felt 100% better than yesterday. No nausea to speak of and I didn't dry-heave at all. Yes! I was able to walk seven laps in the evening and had a very calm night other then a midnight cyclosporine headache. Two oxycodone pills took care of the headache and, of course, helped me get in a good night's rest.
Friday, August 17, 2012
My Bone Marrow Transplant: Day 3
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.17.12 DAY: 3
MOOD: No one talk to me.
MENTAL STATE: I'm struggling to not have a pity party today.
PHYSICAL STATE: Nauseated!! When will it end? Mouth sores and stomach aches.
Thankfully no headache during the night but I did dry-heave several times. Since I had no food in my stomach, I was puking up white foam and bile. Dry-heaving really took it out of me and left me sore and shaky. The nurses were quick to pump me full of every nausea medication they could get their hands and I was also given a motion sickness patch to place behind my ear.
During the night, I learned sleeping completely horizontal did not help the condition of my stomach so I slept with my head slightly elevated and managed to have a more deeper sleep than usual. That morning I managed to sit in a chair a little but was really afraid to move too much for fear my stomach would act up.
In their early morning visit, the doctors expressed their concern that my cyclosporine levels were not as high as they should be to be effective. They warned me that my dose would be increased and I dreaded the headaches a higher would inevitably bring.
Early in the afternoon, I had my mother write my blog as I spoke it to her - light from the laptop was too much and seemed to increase the nausea. The nurses advised me to completely stop eating and drinking anything except water to take medication. With my stomach so volatile, I paced back and forth in my room for a good ten minutes or so before I ventured out to walk a measly five laps. I truly felt awful and did a lot of staying curled up in bed.
At six I was given the second dose of methotrexate. My mouth was in a very sad state; swollen and puffy but thankfully no open sores. I think not being able to eat helped keep my mouth in a better state than it would have been. At 10:00p I was started on a yellow bag of TPN - intravenous food. Besides the normal night awakenings for vitals and meds, I slept pretty decent in spite of my stomach.
DATE: 8.17.12 DAY: 3
MOOD: No one talk to me.
MENTAL STATE: I'm struggling to not have a pity party today.
PHYSICAL STATE: Nauseated!! When will it end? Mouth sores and stomach aches.
Thankfully no headache during the night but I did dry-heave several times. Since I had no food in my stomach, I was puking up white foam and bile. Dry-heaving really took it out of me and left me sore and shaky. The nurses were quick to pump me full of every nausea medication they could get their hands and I was also given a motion sickness patch to place behind my ear.
During the night, I learned sleeping completely horizontal did not help the condition of my stomach so I slept with my head slightly elevated and managed to have a more deeper sleep than usual. That morning I managed to sit in a chair a little but was really afraid to move too much for fear my stomach would act up.
In their early morning visit, the doctors expressed their concern that my cyclosporine levels were not as high as they should be to be effective. They warned me that my dose would be increased and I dreaded the headaches a higher would inevitably bring.
Early in the afternoon, I had my mother write my blog as I spoke it to her - light from the laptop was too much and seemed to increase the nausea. The nurses advised me to completely stop eating and drinking anything except water to take medication. With my stomach so volatile, I paced back and forth in my room for a good ten minutes or so before I ventured out to walk a measly five laps. I truly felt awful and did a lot of staying curled up in bed.
At six I was given the second dose of methotrexate. My mouth was in a very sad state; swollen and puffy but thankfully no open sores. I think not being able to eat helped keep my mouth in a better state than it would have been. At 10:00p I was started on a yellow bag of TPN - intravenous food. Besides the normal night awakenings for vitals and meds, I slept pretty decent in spite of my stomach.
Thursday, August 16, 2012
My Bone Marrow Transplant: Day 2
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.16.12 DAY: 2
MOOD: My humor has left me.
MENTAL STATE: I only think about what needs to be thought about at the moment.
PHYSICAL STATE: Fighting headaches, nausea, and weakness from lack of food.
During the night I suffered from a severe migraine and was given oxycodone for relief. I noticed my mouth had swollen and my gums were tingling and sensitive. I had also developed a white nasty coating in my mouth consisting of mucus and a thick white foam. My tongue was covered in a white goo and no amount of brushing could clean it off. The mucositis was in full force.
Breakfast and lunch consisted of me slowly attempting to eat a small serving of peaches and peach juice. Over a five hour period, I managed to keep down 3/4th's of the serving. I was still extremely nauseated and eventually, in the early afternoon, emptied my stomach with violent vomiting.
I went to my bed feeling awful and slept for a few hours into the early evening. I vomited a few more times and eventually felt better. I was able to walk seven laps outside and that was a huge accomplishment for the day considering how awful I felt.
After the walk I snacked on a banana popsicle. Because it tasted so good, before I realized it, I had eaten the entire thing in a few minutes. That was a really bad decision on my part. Up came the popsicle within the hour. My stomach was adamant about not wanting a thing inside it.
Earlier in the day, the nurses and doctor decided to put me on TPN, which is the term used for intravenous food nutrition. Having been weakened from lack of food for the past three days, I was glad to hear that I would finally be getting the necessary nutrition for my body to function properly. I was told it would probably take three days to feel the full effect of the TPN, but anything was better than nothing at that point.
At 10:00p, the nurse came in with a very large IV bag full of TPN. It looked like milk. I was told it contained fatty lipids and that's why it was white. I was to receive a 'white' bag twice a week, and an 'apple juice' colored bag the rest.
Headache free, but still nauseated, I was loaded on nausea medicine and had a pretty good night's sleep.
DATE: 8.16.12 DAY: 2
MOOD: My humor has left me.
MENTAL STATE: I only think about what needs to be thought about at the moment.
PHYSICAL STATE: Fighting headaches, nausea, and weakness from lack of food.
During the night I suffered from a severe migraine and was given oxycodone for relief. I noticed my mouth had swollen and my gums were tingling and sensitive. I had also developed a white nasty coating in my mouth consisting of mucus and a thick white foam. My tongue was covered in a white goo and no amount of brushing could clean it off. The mucositis was in full force.
Breakfast and lunch consisted of me slowly attempting to eat a small serving of peaches and peach juice. Over a five hour period, I managed to keep down 3/4th's of the serving. I was still extremely nauseated and eventually, in the early afternoon, emptied my stomach with violent vomiting.
I went to my bed feeling awful and slept for a few hours into the early evening. I vomited a few more times and eventually felt better. I was able to walk seven laps outside and that was a huge accomplishment for the day considering how awful I felt.
After the walk I snacked on a banana popsicle. Because it tasted so good, before I realized it, I had eaten the entire thing in a few minutes. That was a really bad decision on my part. Up came the popsicle within the hour. My stomach was adamant about not wanting a thing inside it.
Earlier in the day, the nurses and doctor decided to put me on TPN, which is the term used for intravenous food nutrition. Having been weakened from lack of food for the past three days, I was glad to hear that I would finally be getting the necessary nutrition for my body to function properly. I was told it would probably take three days to feel the full effect of the TPN, but anything was better than nothing at that point.
At 10:00p, the nurse came in with a very large IV bag full of TPN. It looked like milk. I was told it contained fatty lipids and that's why it was white. I was to receive a 'white' bag twice a week, and an 'apple juice' colored bag the rest.
Headache free, but still nauseated, I was loaded on nausea medicine and had a pretty good night's sleep.
Wednesday, August 15, 2012
My Bone Marrow Transplant: Day 1
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.15.12 DAY: 1
MOOD: Someone shoot me now.
MENTAL STATE: See mood above.
PHYSICAL STATE: Extremely nauseated and weak from lack of food.
The steroids given to me to pre-medicate for the transplant brought with them horrific nightmares. Around 4 am a care partner woke me up out of a dream in which I believed someone was trying to kill me. It was so real it left me breathless and I turned to prayer. My husband came to the hospital to sit with me and almost as soon as I fell back asleep a continuation of the dream occurred. Thankfully, he was there to awake me from the second nightmare. Needless to say, I did not get a decent night's rest. Throughout the day my small attempts at eating ended in violent retching. Food was no longer my friend.
At 8:00 am they started the drug cyclosporine. Cyclopsorine is an immunosuppressive drug used to help with a successful transplant. Its job is to suppress what was left of my own immune system from attacking the new. Having been on this drug before, I knew its side effects (that of face-flushing and headaches) and was on the look-out for a reaction.
At 6:00p a new medication. called methotrexate (sp?) was started. This drug was to be given on day +1, +3, +6, and +11. The major side effect of this drug is mucositus, wherein the mouth, GI tract, and the intestines are extremely aggravated. Most noticeably, my entire mouth has swollen and is covered with a white mucus. This condition currently is slightly painful but not intolerable. I have been told it would get worse before it got better. Jesus, give me strength.
By the end of the day, the nausea was still present and my mouth felt like it was stuffed with cotton balls. Severe headaches are constantly being medicated. The doctors believe the headaches could be from the cyclosporine or possibly a reaction to Zofran, a nausea medication.
DATE: 8.15.12 DAY: 1
MOOD: Someone shoot me now.
MENTAL STATE: See mood above.
PHYSICAL STATE: Extremely nauseated and weak from lack of food.
The steroids given to me to pre-medicate for the transplant brought with them horrific nightmares. Around 4 am a care partner woke me up out of a dream in which I believed someone was trying to kill me. It was so real it left me breathless and I turned to prayer. My husband came to the hospital to sit with me and almost as soon as I fell back asleep a continuation of the dream occurred. Thankfully, he was there to awake me from the second nightmare. Needless to say, I did not get a decent night's rest. Throughout the day my small attempts at eating ended in violent retching. Food was no longer my friend.
At 8:00 am they started the drug cyclosporine. Cyclopsorine is an immunosuppressive drug used to help with a successful transplant. Its job is to suppress what was left of my own immune system from attacking the new. Having been on this drug before, I knew its side effects (that of face-flushing and headaches) and was on the look-out for a reaction.
At 6:00p a new medication. called methotrexate (sp?) was started. This drug was to be given on day +1, +3, +6, and +11. The major side effect of this drug is mucositus, wherein the mouth, GI tract, and the intestines are extremely aggravated. Most noticeably, my entire mouth has swollen and is covered with a white mucus. This condition currently is slightly painful but not intolerable. I have been told it would get worse before it got better. Jesus, give me strength.
By the end of the day, the nausea was still present and my mouth felt like it was stuffed with cotton balls. Severe headaches are constantly being medicated. The doctors believe the headaches could be from the cyclosporine or possibly a reaction to Zofran, a nausea medication.
Tuesday, August 14, 2012
My Bone Marrow Transplant: Day 0
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.14.12 DAY: 0
MOOD: Excited in spite of feeling terrible.
MENTAL STATE: ready for the day
PHYSICAL STATE: nauseated, and groggy from drugs
I spent the morning sleeping. I was full of nausea medications as the radiation treatment seemed to do a real number on my stomach. My stomach had decided it would no longer tolerate food or liquids. I made small attempts to eat light foods but could not keep anything down. I slept until 3:00pm.
The exact time of transplantation was up in the air as we were waiting on the hospital lab to complete their filtering process. Finally, around 6:00p they gave me pre-meds for the transplant which included steroids and a heavy dose of Benadryl. My parents and husband were gathered in the room with me and kept the mood upbeat and exciting, however, I was only able to listen and smile with my eyes closed because the Benadryl was working against me. Around 7:00p, a nurse practitioner and my attending nurse came with two small bags filled with the bone marrow. The transfusion itself is a simple affair; the bone marrow filled bags were connected to my IV line and gravity was allowed to do its thing. Once started, my vitals were taken every fifteen minutes to keep an eye out for any reaction. By the time bag two was started, my Benadryl haze had lifted and I felt the best I had felt all day. My family and my nurse had a good time chatting and talking about the transplant until it finished.
The transplant brought with it a new blood type, DNA, and, because it was a male donor, an XY chromosome. It would seem my body has a lot of new things to get used to. The remainder of the day was spent resting and it ended on a good high note.
DATE: 8.14.12 DAY: 0
MOOD: Excited in spite of feeling terrible.
MENTAL STATE: ready for the day
PHYSICAL STATE: nauseated, and groggy from drugs
I spent the morning sleeping. I was full of nausea medications as the radiation treatment seemed to do a real number on my stomach. My stomach had decided it would no longer tolerate food or liquids. I made small attempts to eat light foods but could not keep anything down. I slept until 3:00pm.
The exact time of transplantation was up in the air as we were waiting on the hospital lab to complete their filtering process. Finally, around 6:00p they gave me pre-meds for the transplant which included steroids and a heavy dose of Benadryl. My parents and husband were gathered in the room with me and kept the mood upbeat and exciting, however, I was only able to listen and smile with my eyes closed because the Benadryl was working against me. Around 7:00p, a nurse practitioner and my attending nurse came with two small bags filled with the bone marrow. The transfusion itself is a simple affair; the bone marrow filled bags were connected to my IV line and gravity was allowed to do its thing. Once started, my vitals were taken every fifteen minutes to keep an eye out for any reaction. By the time bag two was started, my Benadryl haze had lifted and I felt the best I had felt all day. My family and my nurse had a good time chatting and talking about the transplant until it finished.
The transplant brought with it a new blood type, DNA, and, because it was a male donor, an XY chromosome. It would seem my body has a lot of new things to get used to. The remainder of the day was spent resting and it ended on a good high note.
Monday, August 13, 2012
My Bone Marrow Transplant: Day -1
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.13.12 DAY: -1
MOOD: Would really like to go home now.
MENTAL STATE: Declining.
PHYSICAL STATE: Headed downhill - nauseated beyond relief.
The end of the round of Cytoxan brought its usual symptoms of a sinus attack, but the medication pumped in to me at the right times really helped the experience be less awful than the night before. I spent only part of the night rocking back and forth humming.
I have only one more day until the 'big' day and I am ever so thankful the chemotherapy part of this ordeal has ended. Today consists only of a short trip to the radiation department for a one and only time of treatment.
Around 10:00a, a man came to my door with a wheelchair and ferried me through seemingly every deep and dark tunnel of the hospital to the radiology department. Clothed in only a hospital nightgown (my first since I've been admitted), it was a very long, cold, and vulnerable ride. Should there ever be a next time, I will be sure to take a robe or a blanket with me. In retrospect, I should have spoken up and said something about it, but my head was still not functioning properly from the night before.
I arrived at the radiology department and after having answered a few questions to confirm my identity, I was asked to mount the most awkward upright stand imaginable. It looked to be made up solely of metal piping with a bicycle seat attached in the middle with the seat height just high enough to balance myself with my toes. Metal hand holds extended from each side for me to help hold myself in place. Once positioned, I sat there for four minutes while a buzz sounded and a huge machine aimed at me vibrated across the room. I repeated the four minute session three times, once facing front, and twice facing backwards. I felt nothing during the entire treatment but was advised to keep my eyes closed to keep from getting dizzy.
The wheelchair ride back to my room was a blur and I kept my eyes closed the entire time. Once back in the room, I felt drained and crawled in bed and slept for several hours. Nausea showed up in full force and lunch and dinner were picked at. I finally threw up everything in my stomach late that night. The nausea medicine they gave me made me sleepy so I finished the evening feeling miserable but able to sleep.
DATE: 8.13.12 DAY: -1
MOOD: Would really like to go home now.
MENTAL STATE: Declining.
PHYSICAL STATE: Headed downhill - nauseated beyond relief.
The end of the round of Cytoxan brought its usual symptoms of a sinus attack, but the medication pumped in to me at the right times really helped the experience be less awful than the night before. I spent only part of the night rocking back and forth humming.
I have only one more day until the 'big' day and I am ever so thankful the chemotherapy part of this ordeal has ended. Today consists only of a short trip to the radiation department for a one and only time of treatment.
Around 10:00a, a man came to my door with a wheelchair and ferried me through seemingly every deep and dark tunnel of the hospital to the radiology department. Clothed in only a hospital nightgown (my first since I've been admitted), it was a very long, cold, and vulnerable ride. Should there ever be a next time, I will be sure to take a robe or a blanket with me. In retrospect, I should have spoken up and said something about it, but my head was still not functioning properly from the night before.
I arrived at the radiology department and after having answered a few questions to confirm my identity, I was asked to mount the most awkward upright stand imaginable. It looked to be made up solely of metal piping with a bicycle seat attached in the middle with the seat height just high enough to balance myself with my toes. Metal hand holds extended from each side for me to help hold myself in place. Once positioned, I sat there for four minutes while a buzz sounded and a huge machine aimed at me vibrated across the room. I repeated the four minute session three times, once facing front, and twice facing backwards. I felt nothing during the entire treatment but was advised to keep my eyes closed to keep from getting dizzy.
The wheelchair ride back to my room was a blur and I kept my eyes closed the entire time. Once back in the room, I felt drained and crawled in bed and slept for several hours. Nausea showed up in full force and lunch and dinner were picked at. I finally threw up everything in my stomach late that night. The nausea medicine they gave me made me sleepy so I finished the evening feeling miserable but able to sleep.
Sunday, August 12, 2012
My Bone Marrow Transplant: Day -2
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.12.12 DAY: -2
MOOD: Slightly despondent and feeling the toil of the chemicals in my bod.
MENTAL STATE: Foggy - my brain processor is slow
PHYSICAL STATE: Hungover from the medicines the night before.
The early, early morning round of side effects from the Cytoxan are killer. Same full head of congestion, scratchy throat and itchy ears but the feeling of wanting to crawl out of my skin kept me awake for most of the night. The burning and itching of the ears is comparable to the worse round of strep throat imaginable. My nurse ordered up a round of what is called Miracle Mouthwash and it is composed of Maalox, Lidocaine, and Benadryl and it completely numbed and soothed my mouth and throat. Sleeping was out of the question so I spent most of the night, eyes closed, rocking back and forth, sitting on the side of my bed humming to myself. The rhythm of my movement seemed to help calm me down. It was early morning before I was able to sleep.
That morning I felt exhausted and ached but blamed it on the rough night before and my lack of sleep. I forced myself to get a few laps in before the Thymo was to start. Eighteen laps was all I managed. Turns out there was a reason I was feeling so poorly because by midday, during the last round of Thymo, there was a small spike in my temperature. It only reached 100 degrees, thankfully, or I would have had to undergo a complete work up of tests and protocols. Antibiotics were started immediately via IV, and seemed to knock out any infection pretty quick.
Today was pretty fuzzy for me, the amount of chemicals my body has been exposed to are adding up and any earlier energy I feltf has long since dissipated. I spend the rest of the afternoon in what I can only call a sleep coma.
Tonight is the last night of Cytoxan and I am thankful for that. The nurse who had been with me the last two nights was scheduled to be with me again and I felt comforted in knowing she would be on hand to medicate as needed.
DATE: 8.12.12 DAY: -2
MOOD: Slightly despondent and feeling the toil of the chemicals in my bod.
MENTAL STATE: Foggy - my brain processor is slow
PHYSICAL STATE: Hungover from the medicines the night before.
The early, early morning round of side effects from the Cytoxan are killer. Same full head of congestion, scratchy throat and itchy ears but the feeling of wanting to crawl out of my skin kept me awake for most of the night. The burning and itching of the ears is comparable to the worse round of strep throat imaginable. My nurse ordered up a round of what is called Miracle Mouthwash and it is composed of Maalox, Lidocaine, and Benadryl and it completely numbed and soothed my mouth and throat. Sleeping was out of the question so I spent most of the night, eyes closed, rocking back and forth, sitting on the side of my bed humming to myself. The rhythm of my movement seemed to help calm me down. It was early morning before I was able to sleep.
That morning I felt exhausted and ached but blamed it on the rough night before and my lack of sleep. I forced myself to get a few laps in before the Thymo was to start. Eighteen laps was all I managed. Turns out there was a reason I was feeling so poorly because by midday, during the last round of Thymo, there was a small spike in my temperature. It only reached 100 degrees, thankfully, or I would have had to undergo a complete work up of tests and protocols. Antibiotics were started immediately via IV, and seemed to knock out any infection pretty quick.
Today was pretty fuzzy for me, the amount of chemicals my body has been exposed to are adding up and any earlier energy I feltf has long since dissipated. I spend the rest of the afternoon in what I can only call a sleep coma.
Tonight is the last night of Cytoxan and I am thankful for that. The nurse who had been with me the last two nights was scheduled to be with me again and I felt comforted in knowing she would be on hand to medicate as needed.
Saturday, August 11, 2012
My Bone Marrow Transplant: Day -3
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.11.12 DAY: -3
MOOD: Good spirits, calm,
MENTAL STATE: Clear headed, more alert.
PHYSICAL STATE: No pain, slightly congested as though I had a case of allergies.
Around 12:30 I woke up feeling very stuffy headed. My face and neck were red and felt warm to the touch. It seemed as though I had a full blown allergy attack in my head. Sore throat, itchy ears, pressure behind my eyes, and a dripping nose. The nurse on duty said it was just another reaction to the medicine I was on but gave me an oxycodone to help with the aches. My entire body felt very full of fluid and my joints ached. I raised my bed up slightly to elevate my head and it really helped clear the congestion out of my sinus cavities.
I was still awake when labs were drawn around 1:00 and I was too miserable to sleep. I worked on the laptop for awhile and was still awake at 4:00a when the nurse came back to check my weight and vitals. One thing I've learned is to not plan on having a normal sleeping pattern while in the hospital. I sleep when I can no matter what time of the day it is and I don't feel bad about sleeping for a couple of hours in the middle of the day.
My attending doctor, Dr. Savani came to see me again around 7:30 along with his fellow and an LPN. He was concerned about the amount of fluids I was retaining and ordered more Lasix to be given throughout the day. I have gained probably 10lbs since I checked in on Wednesday, all of it fluid gain. I told them I had walked 3 miles the day before and they were glad to hear it. Both doctors laughed at my ability to walk that much as it apparently told them all they needed to know about how I was feeling.
Breakfast came around 8:30 and I dug in knowing I'd need all the energy I could get to help me feel my best. Afterwards, I felt well enough to walk, so I got dressed for the day and put on my solid walking shoes. Forty-five laps and 35 minutes later, I felt better for having exercised. Walking the halls with an IV stand is an acquired ability. I made sure to wear a solid shoe as from time to time my foot managed to kick the IV stand causing me to stumble. It probably doesn't help that I'm able and feel well enough to do a bit of power walking as I go. Crowded hallways can be challenging, but I tried to walk as fast as I am able.
Around 10:00a, after my walk, I sat in a chair to catch up on my blogging and around 11:00a my nurse brought me another round of Lasix. For the next hour and fifteen minutes, I made six trips to the bathroom. Inconvenient, yes, but I could really tell the difference in how my body felt after ridding myself of the extra fluid.
At 12:30, my premeds for the second round of Thymo were given to me and my nurse changed and cleaned the bandages over the port area on my chest. There was no pain other than the feeling of having a really good band-aid ripped off my skin. A little scrubbing and tugging was all I felt and I'm sure the haze of the Benadryl she had given me earlier helped me to feel more relaxed than I might have otherwise. Changing and cleaning of bandages are iffy as the solution they use to clean the open wound can have quite a bit of sting. Thankfully, whatever solution my nurse used didn't hurt a bit.
Lunch was brought around 1:00p but I was still in a Benadryl haze so didn't touch it until 2:00p. After yesterday's near starvation, I figured cold food was better than no food. My nurse drew labs from my port during my lunch to make sure all the drugs they had given me were playing nicely together.
Another round of steroids came around 4:30. Steroids and Benadryl serve the same purpose; to make sure any type of reactions to the drugs are minimized and controlled. So far, the Cytoxan and Thymo were treating me nicely. Other than the sunburned red-faced look I was sporting, I felt relatively normal.
The evening was spent napping, reading, working on the laptop, and getting 34 more laps of exercise in. Another 3 miles walked. All the redness and heat in my face was gone by the early evening and I felt excellent.
Premeds for the Cytoxan were given at 9:15p and the chemo started at 10:00p.
Ending the fourth day of this process has me amazed at how well I truly feel.
Friday, August 10, 2012
My Bone Marrow Transplant: Day -4
LOCATION: Vanderbilt University Hospital - Stem Cell Unit
DATE: 8.10.12 DAY: -4
MOOD: Very mellow in the morning; in a good mood and high spirits.
MENTAL STATE: Fuzzy from the lack of sleep. I notice I mentally struggled to form sentences to ask any questions I had and to concentrate on my pronunciation.
PHYSICAL STATE: No headache in the morning. Arms and legs began to swell and felt as though they were falling asleep. Nurses believed it was because I was so full of fluids and the 2 units of blood I received in earlier that morning. Developed a face rash around 7:00p that evening. Felt like a sunburn.
Side affects, side affects, side effects. That what was on my mind during and after the chemo treatment from the night before. If side affects don't happen immediately or during a chemo treatment they may show up a day later. One major side affect of Cytoxan is blood in the urine. The premeds I was given before the Cytoxan included a drug to help prevent bladder damage (Mesna) and after the chemo ended around 12:30a I was given Lasix, an IV drug that makes you want to pee. It worked REALLY well. All the fluid they had pumped into me decided to make its grand exit in wee morning of Day - 4. Urine samples were to be taken every for hours at 2, 6, and 10a. I was wide awake for the two o'clock meeting. Around 2:30p I asked for an Ambian to help me sleep. Didn't help. Because my blood counts were so low, I needed to receive 2 units of blood. Premeds for the blood transfusions were given at 4:00a and they included Tylenol and a small dose of Benadryl. The sleep fairies swatted the Benadryl away with a twitch of their wings because all I felt was a nice warm fuzz. Day -4 did not start off with me as rested as I had hoped. Obviously, getting up to go pee a lot didn't help my attempts to fall asleep and I was also told the steroids I was on could deprive patients of their rest - let's blame it on them, shall we?
I was extremely exhausted, drugged, and fuzzy-headed but just could not go to sleep. I did not hurt or have any pain after the chemo finished and thankfully no blood in the urine either. Way to go bladder! At 4:15a, my vitals were taken by a Care Partner and taken again by my RN at 4:35a right before she started the blood transfusion. Blood transfusions last a good 1 and half hour or so depending on the rate the pump is set to release it into your body. Last pee break for the night was around 4:45a and I believe I finally fell asleep sometime after 5:00a and slept until a little past seven. Shift change for the medical professionals occurs at 7:00 everyday so all the new nurses and doctors introduced themselves. Around 7:30a, the attending physician, Dr. Savani, popped in along with his fellow, an LPN, and the social worker to see how I was doing. A-okay. No questions.
By 8:00a, I knew sleeping was futile. Breakfast came and was not at all what I had ordered the night before. The nurses warned me that the nutrition department struggled to get orders correct and that I should inform them when my order was wrong. Ten minutes after I reported the error, my correct breakfast was brought to me and I raised my glass of milk to Vanderbilt and saluted. Around 9:00a, the numbness in my legs and arms became worse and I assumed I had just been in bed too long and needed some exercise. The stem cell unit is in a square shape with all the rooms along the outside of the square, a hallway in the middle and the nurses stations in the center. Patients are encourage to walk daily so I put on my walking shoes and hot footed it out of my room. I walked for 30 minutes from 9:25a - 9:55a and made 31 laps. Not too shabby after the rotten night I had before. At 11:00a I was given a small under the skin shot to check for possible reactions to the Thymo chemo I would start around noon. The chemo for today is like the ATG (Atgam) I had in the fall of 2011. Thymo is derived from rabbits and Atgam is derived from horses. I experienced a bad case of serum sickness with the Atgam (see my earlier blogs titled Health Matters) so the physicians decided to try the rabbit version this time around.
At 11:30a I was given premeds for the Thymo which included 50mg of Benadryl and steroids. Finally, sleep was crashing down on me and I slept for a solid 2 hours. Thankfully I had no immediate reaction to the drug although towards the end I did feel slightly energized in my body, and I could tell whatever they had put inside me was definitely doing something. After the Benadryl haze wore off I did notice I had a dull headache and full body aches. Not necessarily like the flu aches but just a little sharper. The nurse gave me 5mg of oxycodone and it took the headache and aches away.
Around 2:50, having skipped lunch, I ordered a small meal to be sent up to me. Patients on the stem unit are able to order from a small menu anytime they want and it's supposed to be delivered within 30 minutes. Two and a half hours later my food finally showed up. Not cool. My nurses were not happy that I had to wait that long for my food so they filed a complaint regarding the episode. I'm not one to ruffle the waters much, but having not had food since breakfast at 8:00, I was glad they took the initiative to correct the situation.
After my "lunch" at 5:15, my legs were still aching so I decided to walk laps again. 48 laps in about 45 minutes brought my day's total to 79 laps which equals 3 miles and is the equivalent of walking from the hospital to downtown Nashville. Sa-weet.
My parents came over around 7:00p and stayed for about an hour. I noticed I had redness in my cheeks close to my nose and some redness on my neck. An obvious reaction to the Thymo I had earlier that day. It felt like a sunburn and is warm to the touch, but it was not painful or itchy. I told the nurse and she offered some Benadryl so I made sure to get my daily shower in before she returned with it. Benadryl is administered straight through the IV so it kicks in really fast and turned me into a zombie really quick. I wasn't about to try to take a shower with it already administered.
At 9:15 my nurse primed me with premeds for the next round of Cytoxan that would start at 10:00. I was given a pill to help my liver, IV for my bladder, Benadryl and another Ambian. I fell into a wonderful blissful sleep from 9:30 to 12:15a.
The day ended well!
DATE: 8.10.12 DAY: -4
MOOD: Very mellow in the morning; in a good mood and high spirits.
MENTAL STATE: Fuzzy from the lack of sleep. I notice I mentally struggled to form sentences to ask any questions I had and to concentrate on my pronunciation.
PHYSICAL STATE: No headache in the morning. Arms and legs began to swell and felt as though they were falling asleep. Nurses believed it was because I was so full of fluids and the 2 units of blood I received in earlier that morning. Developed a face rash around 7:00p that evening. Felt like a sunburn.
Side affects, side affects, side effects. That what was on my mind during and after the chemo treatment from the night before. If side affects don't happen immediately or during a chemo treatment they may show up a day later. One major side affect of Cytoxan is blood in the urine. The premeds I was given before the Cytoxan included a drug to help prevent bladder damage (Mesna) and after the chemo ended around 12:30a I was given Lasix, an IV drug that makes you want to pee. It worked REALLY well. All the fluid they had pumped into me decided to make its grand exit in wee morning of Day - 4. Urine samples were to be taken every for hours at 2, 6, and 10a. I was wide awake for the two o'clock meeting. Around 2:30p I asked for an Ambian to help me sleep. Didn't help. Because my blood counts were so low, I needed to receive 2 units of blood. Premeds for the blood transfusions were given at 4:00a and they included Tylenol and a small dose of Benadryl. The sleep fairies swatted the Benadryl away with a twitch of their wings because all I felt was a nice warm fuzz. Day -4 did not start off with me as rested as I had hoped. Obviously, getting up to go pee a lot didn't help my attempts to fall asleep and I was also told the steroids I was on could deprive patients of their rest - let's blame it on them, shall we?
I was extremely exhausted, drugged, and fuzzy-headed but just could not go to sleep. I did not hurt or have any pain after the chemo finished and thankfully no blood in the urine either. Way to go bladder! At 4:15a, my vitals were taken by a Care Partner and taken again by my RN at 4:35a right before she started the blood transfusion. Blood transfusions last a good 1 and half hour or so depending on the rate the pump is set to release it into your body. Last pee break for the night was around 4:45a and I believe I finally fell asleep sometime after 5:00a and slept until a little past seven. Shift change for the medical professionals occurs at 7:00 everyday so all the new nurses and doctors introduced themselves. Around 7:30a, the attending physician, Dr. Savani, popped in along with his fellow, an LPN, and the social worker to see how I was doing. A-okay. No questions.
By 8:00a, I knew sleeping was futile. Breakfast came and was not at all what I had ordered the night before. The nurses warned me that the nutrition department struggled to get orders correct and that I should inform them when my order was wrong. Ten minutes after I reported the error, my correct breakfast was brought to me and I raised my glass of milk to Vanderbilt and saluted. Around 9:00a, the numbness in my legs and arms became worse and I assumed I had just been in bed too long and needed some exercise. The stem cell unit is in a square shape with all the rooms along the outside of the square, a hallway in the middle and the nurses stations in the center. Patients are encourage to walk daily so I put on my walking shoes and hot footed it out of my room. I walked for 30 minutes from 9:25a - 9:55a and made 31 laps. Not too shabby after the rotten night I had before. At 11:00a I was given a small under the skin shot to check for possible reactions to the Thymo chemo I would start around noon. The chemo for today is like the ATG (Atgam) I had in the fall of 2011. Thymo is derived from rabbits and Atgam is derived from horses. I experienced a bad case of serum sickness with the Atgam (see my earlier blogs titled Health Matters) so the physicians decided to try the rabbit version this time around.
At 11:30a I was given premeds for the Thymo which included 50mg of Benadryl and steroids. Finally, sleep was crashing down on me and I slept for a solid 2 hours. Thankfully I had no immediate reaction to the drug although towards the end I did feel slightly energized in my body, and I could tell whatever they had put inside me was definitely doing something. After the Benadryl haze wore off I did notice I had a dull headache and full body aches. Not necessarily like the flu aches but just a little sharper. The nurse gave me 5mg of oxycodone and it took the headache and aches away.
Around 2:50, having skipped lunch, I ordered a small meal to be sent up to me. Patients on the stem unit are able to order from a small menu anytime they want and it's supposed to be delivered within 30 minutes. Two and a half hours later my food finally showed up. Not cool. My nurses were not happy that I had to wait that long for my food so they filed a complaint regarding the episode. I'm not one to ruffle the waters much, but having not had food since breakfast at 8:00, I was glad they took the initiative to correct the situation.
After my "lunch" at 5:15, my legs were still aching so I decided to walk laps again. 48 laps in about 45 minutes brought my day's total to 79 laps which equals 3 miles and is the equivalent of walking from the hospital to downtown Nashville. Sa-weet.
My parents came over around 7:00p and stayed for about an hour. I noticed I had redness in my cheeks close to my nose and some redness on my neck. An obvious reaction to the Thymo I had earlier that day. It felt like a sunburn and is warm to the touch, but it was not painful or itchy. I told the nurse and she offered some Benadryl so I made sure to get my daily shower in before she returned with it. Benadryl is administered straight through the IV so it kicks in really fast and turned me into a zombie really quick. I wasn't about to try to take a shower with it already administered.
At 9:15 my nurse primed me with premeds for the next round of Cytoxan that would start at 10:00. I was given a pill to help my liver, IV for my bladder, Benadryl and another Ambian. I fell into a wonderful blissful sleep from 9:30 to 12:15a.
The day ended well!
Thursday, August 9, 2012
My Bone Marrow Transplant: Day - 5
LOCATION: Vanderbilt Univeristy Hospital - Stem Cell Unit
DATE: 8.9.12 DAY: -5
MOOD: Good spirits, calm, cool, and collected.
MENTAL STATE: clear headed
PHYSICAL STATE: Dull headache all day, probably due to lack of sleep the night before.
My parents came with me for my admittance to the hospital today and at 11:30 I was shown to my room. Met and became acquianted with the nurses and doctors on-call for about an hour then was given permission to grab some lunch in the hospital cafeteria. Returned to my room around 3:30, sent my parents back to the apartment to check on my dogs, and then settled in to work for a few hours on a laptop.
Showered around 5:00p and made a point to wash my hair. The next several days have the potential to really take the strength out of you and simply bathing can be a chore. Start your chemo off right by having a clean head of hair that will last until you feel well/strong enough to wash it again. I also had to cover the bandage from my port insertion in hopes of not getting it wet. The nurse provided a square piece plastic rimmed in tape to affix to my chest. It was awkward and difficult to navigate the shower through the soreness from the surgery, water running everywhere water tends to run, and trying to clean my hair. That fifteen minute shower wore me out.
Fluids to get me hydrated started around 6:00p and premeds for the chemo started around 9:45. I was told that once they hooked me up to the IV stand I would stay connected, so I'm learning to walk around with an IV stand and several feet of IV tubing. They threaded the tubing up my shirt so it hangs down the front of me. Inconvenient, yes, but not as bad as I expected it to be. Closing the laptop around 10:15, I started chemo for the night with a 2 hour dose of Cytoxan. It started around 10:30pm and ended around 12:30a.
Overall, the first day was uneventful and was exactly what I suspected. Meet and greet, fluids, premeds, and chemo.
DATE: 8.9.12 DAY: -5
MOOD: Good spirits, calm, cool, and collected.
MENTAL STATE: clear headed
PHYSICAL STATE: Dull headache all day, probably due to lack of sleep the night before.
My parents came with me for my admittance to the hospital today and at 11:30 I was shown to my room. Met and became acquianted with the nurses and doctors on-call for about an hour then was given permission to grab some lunch in the hospital cafeteria. Returned to my room around 3:30, sent my parents back to the apartment to check on my dogs, and then settled in to work for a few hours on a laptop.
Showered around 5:00p and made a point to wash my hair. The next several days have the potential to really take the strength out of you and simply bathing can be a chore. Start your chemo off right by having a clean head of hair that will last until you feel well/strong enough to wash it again. I also had to cover the bandage from my port insertion in hopes of not getting it wet. The nurse provided a square piece plastic rimmed in tape to affix to my chest. It was awkward and difficult to navigate the shower through the soreness from the surgery, water running everywhere water tends to run, and trying to clean my hair. That fifteen minute shower wore me out.
Fluids to get me hydrated started around 6:00p and premeds for the chemo started around 9:45. I was told that once they hooked me up to the IV stand I would stay connected, so I'm learning to walk around with an IV stand and several feet of IV tubing. They threaded the tubing up my shirt so it hangs down the front of me. Inconvenient, yes, but not as bad as I expected it to be. Closing the laptop around 10:15, I started chemo for the night with a 2 hour dose of Cytoxan. It started around 10:30pm and ended around 12:30a.
Overall, the first day was uneventful and was exactly what I suspected. Meet and greet, fluids, premeds, and chemo.
Wednesday, August 8, 2012
My Bone Marrow Transplant: Introduction
This daily blog of my bone marow transplant experience is written to all those people out there who have just returned from their doctor's office with the news that they or someone they love need a bone marrow or stem cell transplant. When I first heard I needed one, I automatically headed to Google to do my own research. I didn't want to hear just the doctor's perspective on what I would experience, I wanted to hear it from someone who had actually gone through the experience. My findings were minimal. The doctors list the plan of attack, upcoming procedures and all the prescription you'll be pumped full of, but that doesn't answer the day to day questions that I knew I would have.
Bone marrow transplants are able to cure many different blood cancer diseases. My diagnosis falls under the Aplastic Anemia category although a definite disease has not been pinpointed. Bone Marrow Failure is the go-to lingo. As a young teenager I learned my platelet count was below the normal range of 150-400 so I was sent to an oncologist for testing and answers. At the time, my platelets hovered around the 100 mark but over the next twenty years have slowly but surely dwindled away and today my platelets do good to get above 20. To put it in perspective, a count below 10 is life-threatening. One minute you're fine, the next minute your brain has started to bleed and it's over for you. Enter the need for the transplant.
My doctor in Memphis referred me to Vanderbilt University in Nashville, TN and after an initial meeting in May of 2012, it was determined that I was approved for transplant. I was told that a search for a donor would be initiated and as soon as one was found, I would have to travel back to Vanderbilt for a round of testing. After five weeks of waiting a donor was found and I spent two days at Vanderbilt getting tests run to make sure I was in good enough health to handle the transplant. I hope to blog more about what happened in those two days just to pass on the experience in layman's terms.
My initial donor backed out about a week before the move to Nashville, but thankfully I had a second perfectly matched donor who had been found and was willing to donate. A new transplant (or Day Zero) date was scheduled and again, about a week before I was planning to move to Nashville, I was told my new donor had some 'minor medical issues' that needed to be resolved before they could donate. A third transplant date was scheduled. If the whole process of waiting for a donor taught me nothing else, it has taught me an extreme amount of patience. Go with the flow is the only advice I can give to anyone waiting for a donor or having trouble with setting and keeping a transplant date. Anxiety is not your friend at this time. Relax and breathe.
So here it is, August 6, 2012 and my caretaker (my mother) and I have settled in an apartment near the hospital for the next 100 days. I should only be in the hospital between 30-35 days and the next 60 or so I will be staying in the apartment with my mom. The transplant plan runs on a timeline: Negative Days, Day Zero, and Days 1-100. The negative days are for my preparative regimen of chemotherapy and radiation to condition my body to be able to accept the actual transplant on Day Zero. Days 1-30 are spent in the hospital waiting for engraftment to occur (around Day 14) and be on the look out for Graft versus Host Disease (GvHD). Around Day 30, patients are usually able to leave the hospital but must stay within 30 miles from the transplant team. Since I live in north Mississippi, moving to Nashville was necessary.
On August 7th, I was preadmitted to Vanderbilt for the insertion of my Tri-Fusion port near my heart scheduled for the next day. A small amount of paperwork was handled, labs were taken, and I met with my Nurse Practitioner, and the attending physicians. At Vanderbilt, the attending transplant physicians are on a rotating schedule. A team of doctors will handle your care but you may not see the same doctor every day. Be assured that they are all keeping up with your transplant and know about your and your case.
On August 8th, I had to receive platelets before the insertion of my port since my platelet count was 17 that day. The surgery for the port was really no big deal. I changed into a gown and got settled on a gurney and waited for my turn to be transported back to the surgery room. There are several different ports that can be used but I was given a Tri-Fusion port wherein three separate lumins (as they are called) will hang out of my chest. These are just access lines for the nurses to draw blood and administer prescription. Thankfully, no more needle pokes to the arms! I was sedated during the whole procedure with what they call twilight sedation. You can hear people talking but you could not care less what they are saying. They prepped the area first with Lidocane to numb my skin and I felt a pin prick and sharp pain at first but it went away almost immediately and I honestly didn't feel a thing after that. The entire process lasted about 30 minutes, most of which was spent prepping the area and covering me from head to foot with paper blankets. Afterwards, I felt well enough to go eat at a nice restaurant with my parents but soreness kicked during the meal and I just wanted to go relax in my recliner at the apartment. They gave me prescription for pain in case I needed it, and I did take some that night but overall this procedure is not one to be too anxious about.
Tomorrow, August 9th, is my admittance to the hospital date and the beginning of my conditioning regimen with chemotherapy.
So far, so good!
Saturday, March 24, 2012
Margo: 6: Finally, the Finale
Mrs. Chooka, the local post master, had noticed Margo's dependable visits a few days in and had questioned her. "Margo, dear, are you expecting something important? You've been here every day for the past three days."
Margo had smiled, nodded her assent, and then quickly left. The one person in the world she would never share personal information with was Mrs. Chooka. A busier body was yet to be seen in their small town. She knew everything about everybody and told everyone she came across everything she knew. Whether they wanted to hear it or not.
Standing there today, though, Margo said a silent prayer of hope and inserted the key. A stack of envelopes sat angled in the cubbyhole. At least there was mail today. The most horrible feeling in the world was to open the box and see an empty black hole. Margo grabbed the small bundle and did a quick flip through to see if she had received anything.
Her breath caught. There it was. A letter. Addressed to her from the contest committee. Glancing over her shoulder, Margo noticed Mrs. Chooka giving her the eye. She could not open the letter here. What if it was a rejection letter? Bursting into tears in the post office would be the absolute worst. Besides the fact her emotional outburst would be spread all over town by midafternoon. As if Margo needed that kind of attention.
Margo quickly locked the box back up, held the stack of mail to her chest, and made a beeline for the door. Luckily, a customer walked in needing Mrs. Chooka's help so Margo's escape went unnoticed.
Reaching the side walk, Margo's vision narrowed and her feet moved her forward to safety; her house. She would open the letter there in the privacy of her own bedroom. Regardless of the outcome, she wanted to be alone to either rejoice or mourn. Or wail and caterwaul.
Margo gripped the letter tightly in her hand. It was a small, white envelope but to Margo it felt as if it were the deed to her very own castle. Heart pounding, breath coming and leaving quickly, Margo was lost in the moment. Her stomach turned over and her brow began to perspire. Feeling a bit light-headed, Margo slowed down a bit and took deep breaths. The last thing she needed to do was pass flat out on the street and make a scene.
Margo reached the edge of town and the Manley farm was easily seen up the road. She was almost there. It had been six weeks since she had mailed off her story. Six very long weeks of waiting.
At last, she made it up the porch and quietly opened the screen door. Its usual squeak was only slightly subdued and Margo prayed her mother would not notice her arrival. She needed to be alone.
Tiptoeing up the stairs Margo entered her bedroom, closed the door, and went to her desk. She sat for a moment staring at the envelope. Her mind began to race and her hands began to tremble. This was it.
Margo pulled out the letter and began to read. The very first word her brain managed to translate caused Margo to put her hand to her mouth. It couldn't be true. Finishing the letter, Margo slumped back in her chair. She felt as if every bit of energy had simply drained out of her body and she weighed absolutely nothing.
Margo's eyes drifted back to the first word she had read and her face exploded with pure emotion. 'Congratulations.' She had won.
________________
Mrs. Manley froze. The pounding of footsteps on the stairs was enough to rattle the entire house. It sounded as though a herd of wild animals had decided to move in upstairs and were coming down for dinner. When she heard her daughter yelling her name, Della almost died in her dishwater.
"Mama! Mama! MAMA!"
Della had never heard her daughter scream out in such a way and feared something awful had happened to her. Racing towards the sound, Della called out, "What! What is it?"
Margo's face was lit up like a Christmas tree. She was waving a white piece of paper around and jumping up and down.
"Margo Manley, you scared the life out of me! What's all this commotion about?"
"I won, Mama! I WON! I won the writing contest!"
It took a second for Della to process what her daughter was telling her, but when she did, Della began her own dance of victory. Hollering at the top of her lungs, she grabbed Margo and spun her around. They laughed and hugged and pretty much wore themselves out celebrating.
"There's more, Mama. There's more."
Margo began to read, "'We would like to invite you to read your winning story to the entire faculty and student body during the award ceremony and presentation of your scholarship.' Can you believe it, Mama? And they invited you and Daddy to come and even sent vouchers for travel."
Della Manley had to sit down. This was just too much excitement for her to handle. She flopped down in a nearby chair and began to fan herself. Her little girl had won! She was so proud of her daughter.
"Well, I think we should celebrate! Call your father and tell him to come home. We've got to plan ourselves a trip to Boston!"
Margo squealed and ran to the phone.
________________
The train ride itself was an adventure for the Manley family. Having never been as far east as Boston, the Manley's were captivated with the scenery passing by their window. After eight hours of rocking back and forth and stopping as needed, the train pulled into Boston around dusk and a cab was hailed to take them to their hotel accommodations provided by the college.
The hotel was near the college and Margo had caught a glimpse of the campus in the cab ride over. Chills of excitement had ran down her arms.
Entering the lobby, the Manley's carried their luggage to the front desk and Mr. Manley began the check in process. Margo noticed a group of young people piled together nearby. The clerk at the counter suddenly let out a gasp and a smile filled his face.
Entering the lobby, the Manley's carried their luggage to the front desk and Mr. Manley began the check in process. Margo noticed a group of young people piled together nearby. The clerk at the counter suddenly let out a gasp and a smile filled his face.
"Well, if it isn't the Manley's," he said. "We have been anxiously awaiting your arrival. And you must be Margo." The Manley's stared wide-eyed at each other, then at Margo. Even hotel clerks knew about their daughter's success.
The clerk noticed the family's surprise. "Don't worry, the only reason I knew to expect you was because that group of kids over there have been hanging around my lobby since this afternoon waiting for you to arrive. They are very excited to meet you."
After he finished checking them in, the clerk caught the attention of one of the young men and waved him over.
"The Manley family has just arrived; I know you've been waiting for them."
Margo began to sweat and waited for her parents to finish their polite greetings. The young man turned to her and stuck out his hand.
"I'm Davey, you must be Margo."
Margo slipped her hand into his and then quickly pulled it out again. The concept of having to interact with people her own age had not entered Margo's head. She was not prepared for this. She knew she would have to speak with the contest committee and possibly the faculty, but not with the students. Her eyes remained downcast and Margo just stood there in awkward silence.
And then Davey did the unthinkable.
"Margo, my friends and I would really like to get to know you. We're all literary majors and are excited about hearing your story tomorrow. We thought we could take you around town and show you the sites. Give you a good Boston welcome. If it's okay with your parents, that is."
The Manley's nodded their approval and then looked at Margo. Davey didn't realize he was asking the impossible. Margo would barely go visit her own relatives let alone go out with a bunch of people she had never met before. They waited for Margo's response.
Margo had stopped breathing. She had absolutely forgotten how to inhale and exhale. He had to be kidding. She raised her eyes and looked into his face. He wasn't kidding. He wasn't kidding at all. He really wanted her to join them. And what's more, he was truly looking at her. And her looks didn't scare him away.
Warmth bloomed slightly in Margo's cheeks. Today had been full of new adventures, why not one more? This was, after all, the beginning of her brand new start and she was determined to give it her best.
Margo smiled a bit and shook her head yes. Davey assured her parents they would have her back at the hotel in a few hours and took Margo's arm to lead her over to his awaiting friends.
Della's jaw dropped with shock. Walter could see the words struggling to form in her mouth and he knew if she ever got them to come together, the whole town would hear them. Not wanting to embarrass his daughter, Walter quickly ushered his wife out of earshot towards their room. He prayed the hotel walls were thick.
______________
Margo stood behind the podium, the microphone staring her in the face. The ceremony had been wonderful so far. She had been awarded a scholarship as a literary major and the dean of the school had congratulated her personally on her writing ability. Her story was even to be published in a short story form and available for the public to read. Margo's heart was completely full.
And last night had been a night of all nights. Everyone in the group had been so kind to her; they were genuinely eager to get to know who she was. Conversations centered around appreciated authors, books, and writing styles. Laughter was abundant and Margo even caught herself relaxing a bit and cracking a joke or two. She was having fun. She was actually having fun. It had been like a dream. Margo had prayed she would never wake up.
Clearing her throat, Margo looked out at the audience and took a deep breath. She began speaking her thanks to those on the committee, in the audience, and finally her parents, her voice shaking at first but then growing stronger. Her mother was beside herself with pride, grinning from ear to ear. Her father had a small smile on his face and his eyes were moist.
Softly, a calm crept over her shoulders. "My story is about the average and the every day. It's about all of us, I suppose. I hope you enjoy reading it as much as I enjoyed writing it. It is from my heart."
Softly, a calm crept over her shoulders. "My story is about the average and the every day. It's about all of us, I suppose. I hope you enjoy reading it as much as I enjoyed writing it. It is from my heart."
All eyes were on Margo as she began to read.
"'Her face was unfortunate. Bland and bleak in all its descriptions, it was a face only a mother could love....'"
"'Her face was unfortunate. Bland and bleak in all its descriptions, it was a face only a mother could love....'"
THE END
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