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.
Friday, August 31, 2012
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!
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