A happy re-birthday
Today is my birthday. Sort of. It’s not really the actual day of my birth. Instead, it’s more like a day of rebirth-a re-birthday, perhaps? On this day, Feb. 5, four years ago, I received my stem cell transplant at Ruby Hospital in Morgantown, thus giving my immune system a fresh start in my battle with Hodgkins lymphoma.
During my time in Morgantown, I kept a journal. When I read back on those entries, I find them interesting, sad and even comical, but it still remains incredible to me the things I went through before, during and after the actual transplant.
I’d like to share some excerpts from my journal with you. I’ve never shared my journals with anyone-they simply served as my personal depiction of events. There are misspellings, grammatical errors and some incomprehensible statements, but can you blame me? I was floating on a cloud of chemo without an immune system-I’m lucky I was able to form complete sentences! My sister, Rhonda, told me multiple times that I was repeating myself (including the day I spoke to her on the phone, forgetting that I’d already talked to her earlier that same day, and proceeded to repeat the exact things I’d told her three hours ago).
Here are some snippets that I hope you will find interesting. Where you see brackets I added some information to help explain certain medical terms.
Monday, Jan. 28, 2008-We checked in probably around 9:20 a.m. and they sent me to room 916. Of course once I got here there wasn’t a frantic pace like I was sort of expecting at first, so there was a lot of sitting around waiting.
Thursday, Jan. 31, 2008-The 36 hour etoposide chemo marathon is over. This wasn’t one bag. It was 9 giant horse-sized bags of chemo, that each ran for 4 hours starting at 6 p.m. on Tuesday. I felt like I was starting to float away. I watched my weight start out at 132.6 when I checked in Monday and then it ballooned up at one point to 151! Almost 20 lbs of fluid gain! I felt very squishy inside.
Friday, Feb. 1, 2008-The food around here is so bland and disgusting. I am going to stab myself in the eye if I have to choke down one more grilled cheese sandwich. And they are also very inconsistent with getting people’s food orders….They keep trying to serve people hamburgers and hot dogs for lunch. Who still serves a human a hot dog in a hospital? Seriously? Aren’t those things made of squirrel parts and shoe leather?
Sunday, Feb. 3, 2008-So at 2 a.m., this doctor literally busts into my room and starts telling me that I will need blood products because my hemoglobin was low. He asked me if I’ve ever had a transfusion before-I didn’t-and he had to have me sign a consent form. I swear, he blew in and out of here like the Tazmanian devil. After he left, I was kind of scratching my head, like, what the heck just happened there? Anyway, the transfusions were two bags, and it was uneventful.
Tuesday, Feb. 5, 2008-Transplant day finally arrived! I was ready to go. It was Fat Tuesday, the last day of Mardi Gras, and a fat day for my stem cells. Rhonda bought me Mardi Gras beads, which I wore, along with that fuzzy blue hair hat that Dennis [a new friend we met in the hospital] bought me. It was a hoot. Even the doctors liked my hat. I think they got a kick out of me. The morning of the transplant, they increased my fluids. Then they brought me some premeds to get me ready for the 1 p.m. start time. Sarah was my nurse, so she did the transplant. They hooked me up to a blood pressure cuff and a heart monitor, and then they took vital signs every 15 minutes. The lady from the transplant team brought up my thawed out stem cells and Sarah hung them on my IV pole. Then she hooked me up and unclamped the bags, and they just dripped down into me by gravity. They warned me before hand that the preservative they used to freeze the stem cells would be bothersome….At first it wasn’t so bad, but the more bags I kept getting (I had 5), the worse it seemed to get. I was getting hot flashes (and had to sadly take off my blue hair) and I couldn’t really lay back in bed because I couldn’t breathe that way. By the 4th bag, I was starting to get nauseous. It seemed like the bags were just taking forever to go in. Especially it seemed the second bag was dripping so slowly. When the bags were finished I wasn’t as bothered by the preservative….However, as soon as they started dripping I just felt this wave of heat and nausea rush over me. By the last bag, one of the other nurses in here rushed out and got me an anti-nausea drug…and pushed it in the other side of my cathedar. It seemed to start working right away. Mom also wet me a cool cloth to put on the back of my neck and then on my face a little. I don’t know who said that was anticlimactic, but that person obviously never got a transplant like that. I think the real problem was just the number of bags and how many times I had to get that preservative. Once the stems cells were finally finished, it was about 3:10 or so, I started to feel a little better….I rolled over and I think I slept for about 2 hours. They brought me my dinner surprise-surprise, I didn’t eat it!-and I told mom if I had to choke down another grilled cheese sandwich I was gonna die. I wasn’t really starving, but I just couldn’t bear to eat anything they were going to attempt to serve me. So we called the Olive Garden and mom ran out to pick it up. I think she was a little annoyed with me because she said I was tired and cranky and she just figured she better go get me what I want. Haha.
Friday, Feb. 8, 2008-Today was a better day for me energy wise. Yesterday I really felt rundown and like I wanted to lay around all day….My mouth is a little sore on the sides of my tongue, but no sores or anything. My gums feel a little raw, like sandpaper. It sort of feels like I had dental work done all day long and had my mouth open so now it’s sore.
Saturday, Feb. 9, 2008-I felt good again today. Dr. Craig was in this morning and said he’s very happy with the way I’m going. He said I was “miles ahead of the pack.” Oh, I was talking to Liz [a friend] on the phone this afternoon and pulled out this big clump of hair! I was a little stunned with how much came out, but I knew it was going to fall out again. I hope mom remembers to bring her clippers. If not, I think they have some here. I’ll have her buzz me again this week. Sad, I will miss the little bit of hair I have. But at the same time, I know this is the last time I’ll have to worry about having it buzzed, so the next time will be the fresh start and I can grow it long and pretty and color it red! That will be so fun!
Wednesday, Feb. 13, 2008-My platelets went down really low on Monday and I thought for sure I’d be getting platelets Monday night/Tuesday morning, but they stopped just barely above where the cut off is for a transfusion (mine were 12, they have to go down to 10 before they will give you platelets)….Last night/this morning at 3:30, they brought in my platelets. They had dropped to 7, so I got a transfusion. The platelets were a light yellow color and looked kind of like glue. They only took about 30 minutes to go in, but I was awake the whole time.
Thursday, Feb. 14, 2008-Today was a crappy day. My white count went back to 0.1 and I was really upset about it. I know there is nothing I can do to make the cells grow faster, but it’s still frustrating. I feel good but on paper I am sick. I guess that’s what is so hard about being here. I called mom this morning and vented to her. She told me not to cry or be grumpy, but I told her I think after three weeks of being a cheerleader I was entitled to have a bad day now and again. She agreed.
Saturday, Feb. 16, 2008-Last night was eventful. I ran my first neutropenic fever. [When your white blood cell count starts to rise, sometimes the initial burst results in a fever.] My temp was 100.6 at 8 p.m. and an hour later it was 101….They have a whole set of protocols that they follow, so I had to give a urine sample, get a chest x-ray (they came up here and took it), and they took blood cultures from both of my lines in my cathedar. Then they started me on IV antibiotics. One I get once a day, and the other I get every 8 hours. Even though Dr. Mirza said my cultures were negative, they still treat you as if you have an infection. I also started on some pain meds for my mouth yesterday.
Monday, Feb. 18, 2008-Well, this was the second day of seeing my white count go up. Sunday it was 0.4 and today it was 1.0. Today was quite eventful. Dr. Beall came in and told me if I wanted to go outpatient today or tomorrow. I thought he was joking-I was like, yeah right! But then I realized he wasn’t joking….So we talked and decided today I would have a “pass” over to the family house and then go tomorrow. So I got some platelets before I left, and it was about 12:30 when we went over to the family house. Of course we’re on this elevator with a ton of people. And we stopped on this one floor and I swear 12 people got on. It was like a clown car….Mom made me lunch, which I ate in the room, and then I decided to lay down for a while….I was cold. So I got under all the covers and the extra blanket and I was still shivering. Then my face started feeling hot, and I told mom I thought I had a fever. So she felt my head and said I felt hot. So I told her we better go back over to the hospital. When I got here, I saw my nurse in the hall and told her I felt like I had a fever. So she sent the girl back to take my temperature, and it was 102.6! So they had to go through all the same rigomoro with the urine sample, chest x-ray and blood cultures. Then they put me on the IV antibiotics again….Nobody seemed overly concerned that there was anything to worry about infection wise.
Thursday, Feb. 21, 2008-That fever I had Monday never really did go away, and on Wednesday morning, it went up to 104. I was pretty scared at that point as to why I kept having these fevers and why they were so high. Well, they ended up taking me down for a CT scan of my sinuses and chest on Wednesday morning, and it turns out that I have pneumonia in my left lower lobe of my lung. They were a little surprised because my lungs always sound clear.
Monday, Feb. 25, 2008-I still was running fevers on Friday, but then I went 21 hours without a fever, and had another fever Saturday night around 8 p.m. Even then, it was pretty low grade, 100.8. Since then, no more fevers. My temp has actually gone back to my normal body temperature….My counts are slowly going up. After going down from the infection, my white count went from 1.7 yesterday to 2.6 today….I am feeling very fatigued. I think the week of fevers really pulled a lot of energy out of me, because I really didn’t get much rest last week.
Wednesday, Feb. 27, 2008-Today was my first full day as an outpatient. They let me leave yesterday, although by the time I got out of there, it was 6 p.m….I got a pretty good sleep I would say. One thing that was great about being over here [back at the family house] is that the room was actually dark at night. It just was not very dark in that hospital room. It was sort of weird going back over to my room this morning, but that was ok. All I had to do was get bloodwork and then wait on it. Everything was good, except my potassium was low, so I needed to take those giant horse pills. They were hard to swallow.
Saturday, March 1, 2008-Can’t believe it’s March already. I saw Dr. Craig on Thursday and he gave me Friday (yesterday) off, and I went over to the BMTU this morning. They put in a new system and we ended up having to wait 2 hours just for bloodwork. I actually ended up falling asleep for 30 minutes. Anyway, that was my last visit over there, and I will see Dr. Craig at the Cancer Center on Monday. He said, “Let’s get you out of here.” And I asked him if he thought I was ready, and he said, and I quote, “Heck yeah!”
Sunday, March 2, 2008-Today was a long day, especially since we know we’re going home tomorrow….We ate breakfast and decided to take a trip over to this new Kroger that opened….Kroger was my first trip out since I checked in to the hospital on Jan. 28. Who would have thought a trip to the grocery store would be so fun?
Tuesday, March 4, 2008-I’m home! YAY! We had to wait at the Cancer Center for almost 4 hours on Monday….Dr. Craig told me my counts were good….He told me that I no longer had to wear my mask in public, but it was probably a good idea to wear it at the hospital/doctor’s office since there were a lot of sick people around. He also told me that I didn’t have anymore dietary restrictions….It is great to be home. Wally and Pumpkin [my kitties] slept by me last night, and it was so nice to sleep in my bed.
Oddly, even though that all took place four years ago, I can still remember many of those events vividly, including all the sights and even the smells. It’s been a long journey, and that was only a small part of it.
Last week, I had another clean PET scan, which means I’ve been in remission for 32 months. I’ve changed into a new pair of shoes and started down a different path, a path not littered with doctors appointments, tests and uncomfortable cathedars implanted into my body. I’m not sure where this new path is going, but I’ll just keep walking and see where it leads.