I have been home for two weeks and two days and I'm feeling great! It's so nice to be home and with my family again, after 16 days away. It feels like I missed the whole month of February! I haven't wanted to post though, mostly because I haven't wanted to go back and relive the transplant while I'm trying to go back to a 'normal' life. Not that it was too terrible, because it wasn't, but I am SO READY to put it all behind me and move on! But first, the update...
The hospital stay and actual chemo part of the transplant lasted 6 days and 5 nights. I received a treatment called BEAM, it's four different types of drugs and is commonly used before a transplant to kill off all bone marrow and (hopefully) any remaining cancer cells in the body. The last drug I was given was over 1/2 hour and was the one that causes the major side-effects. I had to chew on ice from a 1/2 hour before administration of the chemo to 1 hour after. The thinking behind this is that the ice constricts the blood vessels in the mouth so that less chemo goes through that area which would keep the mouth sores to a minimum. I ate a full bin of ice- one of those nice pink puke-buckets full :)!! I am SO glad I did, because I only ended up getting one mouth sore, and it was painful enough! But more on that later...
The actual hospital stay was not bad. I didn't get too sick, I was able to read a book, paint my toes, talk on the phone, watch lots of TV (American Idol and the Superbowl were my faves), and ride the stationary bicycle every day. It was still completely boring, but hey, I wasn't bored AND feeling crappy, so I say it wasn't too bad! After chewing the bucket full of ice I was discharged from the hospital to head over to the new Cancer Center a block away.
The nurses discharging me were really funny- they acted overly concerned for my safety (I'm sure it was more a liability thing)- they wanted to wheel me out, have me wait for transportation, and be dropped off at the Center's doors to be wheeled up to the Day Room where I'd be staying for the final 10 or so days of the transplant. I told them I'd just walk, with Adam by my side, and they were horrified- what if I tripped?!! I ended up agreeing to have Adam pull the car up to the hospital if I could be allowed to walk myself to the front doors... but, since Adam had parked at the Center, we just walked over anyway. I think the nurses knew what I was going to do, but they kindly looked the other way!
Once I made it to the Day Room I was put into a secluded room of my own where I'd be staying from about 8:30-5:00 each day for the following ten days. The Day Room is a huge room where there are about 15 nurses working with anywhere from 1 to 40 patients sitting in chairs around the room to receive treatments; chemo, blood, platelets, shots, etc. I was in one of 5 rooms off to the side, specifically reserved for transplant patients to keep us away from the "outsiders." Adam and I were given a key to an apartment owned by the hospital that we'd stay in at night and we were instructed on what would happen over the next ten days. It took forever to go over everything, though we'd heard it all before in the required transplant class we had to take.
We went to the apartment that night and got settled in. It was a large one bedroom place very simply furnished with two TVs and cable. And for my first meal outside the hospital: Dominos pizza! It was heavenly! There wasn't much to do in the evenings after spending the day at the Center. Adam and I watched TV (Adam usually worked on his computer), ate dinner, talked to the kids on the phone, and went to bed. Bed was the worst part... They had two tiny twin beds that were hard as rocks and not long enough for Adam. Because of pain caused by my port on my right chest I could only sleep on my left side and after two nights of sleeping on a rock in one position... I wasn't getting much sleep. I ended up sleeping on the couch the rest of my stay because it was more comfortable than those horrible beds! By the end of our stay we were ready to say goodbye to the place!
The 2nd day in the Day Room was called day Zero- the day of the actual stem-cell transplant. I'd already had the chemo to kill everything off (it would have killed ME, without the stem-cells- pretty amazing stuff) and now I'd be getting my own stem cells back. For something that was technically saving my life, it was pretty uneventful. I sat there with the tubes hooked into my port, and the doctor came in three different times to hang three bags of cells to drip into my body. It took about 40 minutes and I felt a slight tickle in my throat (the preservative in the cells), I got flushed for a couple minutes, and I ate mints to keep from tasting the bitterness of the preservative, all while reading a book. Then it was over! After that it was just a matter of days until the cells started reproducing and my blood counts went up. The rest of the 10 day stay would be sitting in that tiny little room receiving fluids and being observed by the nurses.
My little room was pretty boring- it had a chair, a small TV, and a sink. That's about it. Ten LONG days in there... Oh yeah, it also had a clock- I will remember that clock forever! I don't know how many times I stared at that thing thinking to myself, "I should get up," and I'd look again at the clock and notice thirty minutes had passed and I was still staring and thinking the same thing... I had about three days where all that I did was sleep and stare off into space, periodically checking the clock to see how much time had passed. And the craziest part about it is that it felt like it was passing quickly! My mind just wouldn't work for those three days- I was in a haze that's indescribable. I got to the point where I thought if it was worse the next day I'd have to be in a wheelchair and Adam would have to help me get dressed! But the next day was better, and I started being a person again after that.
Along with those three bad days I also had the one mouth sore I had mentioned. It's true what I'd been told- they were the worst part! The sore popped up about day 3 (after day Zero) and it was in the back of my throat where all that ice I'd chewed hadn't reached! By the next day I could not swallow without wincing. I was prescribed pain killers and started planning my meals around those pills- I had to take one before meal time just to be able to swallow my soup! And that's all I ate for a few days- soup. The sore was painful for the following 6 days, until about day 9- the day before I went home. My mouth is still not back to normal, my gums feel rough and the top of my tongue doesn't have much taste ability, but it's all supposed to go back to normal eventually. Maybe when my hair starts growing again my mouth will also renew those damaged parts?
I did end up spiking a fever on day 7. It seems pretty commonplace that patients do, though the guy who left right before me didn't get a fever or any mouth sores so I'd had my hopes up. It wasn't a big deal though- my temp went up to 101.5 and because the nurses can't know for sure what caused it they started heavy duty IV antibiotics. I had to be on antibiotics around the clock so I was hooked up to a cute little fanny pack I had to wear at night- that was fun! The antibiotic cleared out my system so I also came down with some crappy diarrhea... ha ha! The doc would have sent me home on day 9 had I not had this secondary complication. He ended up taking me off the antibiotic and giving me a nice little immodium pill that worked wonders. And on day 10, I was outta there!
According to the nurses my stay there was pretty smooth. They chalked a lot of it up to my youth and my general good health. I have to also chalk equal parts up to faith, attitude, and the support of friends and family. Though it wasn't fun, there were bright spots during those 16 days. I had friends come visit me, made new friends in the nurses and two other transplant patients there at the same time, and was able to spend every night with my husband.
I was finally discharged to head home around 5PM on the last day of my stay- I had expected to be out earlier and had told Mykee that I'd be home when she woke up from her afternoon nap, but now that wasn't going to happen. When I walked in the door I was so excited to see my kids I couldn't decide which one to go to first- Evan was sitting at the table eating and Mykelle was in the bedroom. Since Evan could see me I went directly to him- he acted semi-excited and said, "Hi Mom, I lub you," then went back to eating. What a cute little 2-year-old! So I went to find Mykelle and she came running out of her room crying hysterically. It was incredibly heartbreaking- she latched onto me and cried uncontrollably for about five minutes saying, "I miss my Mommy, I want my Mommy." I just kept telling her I was home and so happy to see her and that I loved her. As quickly as the hysteria came, it was gone! She started smiling and laughing and telling me stories. Her and Evan wanted to sit right on top of me the first couple of days I was home, and hated it when I went anywhere without them (like the bedroom or bathroom). It was so good to be home!
Of course, it turned out the kids had the beginnings of a cold, and I promptly caught it! Lucky for me it was not very strong, but the doctors were still angry with me for not taking more precautions- though how I was supposed to keep from getting a cold that I didn't even know the kids had until the next day is beyond me! It did make those first few days at home a little difficult, but hey, I was home! And I had my Mother-in-Law there to help me!
Adam's mom, Anne, had been at the house watching the kids while Adam was with me every day. She was so nice to come out and help, and the kids loved spending time with Nanna. She stayed another week after I came home, which was wonderful! She helped me around the house with laundry and cleaning, let me sleep in while she got the kids up, entertained the kids when I was too tired, did the grocery shopping and most of the cooking, and kept me company. I'm so lucky to have such a great MIL! I did feel bad though when Mykelle said to her, "I'm ready for you to go home now and my Mommy to stay here." Fortunately Anne was very understanding and didn't get her feelings hurt!
It's now been about a week since Anne left, and things are going well! I went to the doctor on Friday- my blood levels are looking good and I don't have to go back for 2 MONTHS! Yay! In two months I'll have my scans done again and assuming they're clear I'll be going back every 3 months for the first year, then 6 months, then yearly. Sounds good huh?
I am still on a restricted diet (low microbial) and the docs want me to be careful about being around too many people. I am not allowed to clean the house for the first 3 months (lucky me!). I have to take pills every day for about 6 months to help my immune system. Supposedly I'm not to swim in any lakes, oceans, or pools this summer, but the docs said I could probably bend that rule a little, but others they weren't so nice about. Flu season is of course a big worry, so I've been told I need to wear a mask when I'm in busy public places and to stay away from places like church for a while longer. I should be back to normal blood levels by six months post-transplant, though I've been told some of the cognitive problems and fatigue can last much longer and sometimes be permanent. I still have to call the hospital with any temperature over 100.5 and I could easily be readmitted to the hospital (especially during the first three months). It sounds intimidating when I put it all down in one paragraph like this, but it really isn't too bad right now. I have energy, I just have to pace myself and take a nap here and there. And of course I have Adam to help. I'm grateful he has such an awesome job that allows him to be home at a great time (4:30) and gives him a flexible schedule.
