Nice and Extra Long

Ok….. I know it’s been awhile. To tell you the truth, I’ve just been so tired and it really has taken this long for me to get my energy back. I think today was the first day in about a month that I’ve walked around and gone for a ride. Oh and today I was discharged from the hospital too. I guess the best place to start is where I left off.

So I had the mouth sores, the cool morphine shot machine, I wasn’t eating, I was getting a fever every other night, but I felt like at least I wasn’t throwing up anymore. Anyways, 2 days after I last wrote, I noticed that I started getting these little red dots on my arms so I showed them to a nurse and she told me not to worry. The next morning I received a platelets transfusion for the first time ever but I had an allergic reaction to it. So my whole body broke out in hives and they gave me Benadryl and the hives went away. But the little red dots I’d noticed the night before only on my arms had now spread all over my body, including my face. Like clusters of tons of little red dots. I try not to freak out. My doctor sees me that day and tells me not to worry that actually it’s completely normal and that by the time I leave the hospital, they’ll be gone. By the way, this is a Thursday morning. So later that day a nurse tells me that the dots are a sign of having a low platelet count, which makes sense.

So, this is what happens Thursday and Friday that makes me have a meltdown on Saturday. The dots itch. Benadryl doesn’t work for the itch. So Thursday I scratch all day because the Benadryl doesn’t work. Also, I’m still getting the fevers so Thursday they tell me that it’s because my Hickman catheter is infected so they’re taking it out on Friday. Friday rolls around. My doctor prescribes a steroid and a hydrocortisone cream for the itch. It doesn’t work. So Friday I continue to scratch all day. They take out the catheter and they tell me that now they have to start a new IV line on my hand to give me my 8 antibiotics, morphine, and IV nutrition (since I’m still not eating). If you’ve read my blog you’ll remember all the troubles I’ve had with IV lines on my hands. Basically I’m paranoid and have a tendency of crying. But of course it turns out I need 2 IV lines because one is for my medication and the other one for the nutrition. By the way, they had to be in the same hand to leave the other hand free. As soon as the nurse puts in the first needle and I feel the sharp pain of her moving it around to get it in the vein, I turn my head and start to cry. Of course she feels bad and she apologizes for hurting me and I tell her it’s ok. Anyways, the 2 lines get put in my right hand, you know, the hand that does everything that I can no longer use.

So it turns out the potassium in the IV nutrition is irritating to the nerves by the vein. My hand starts to hurt but the nurse tells me that there’s nothing she can do about it since I need to be given the medication and nutrition. So once she leaves and I’m left alone, I just start to cry because I feel so miserable. Literally miserable. My mom gets there later and she tells me it’s ok to cry and that makes me feel like maybe I’m not just overreacting. So Saturday morning rolls around. Mind you, I’ve spent 2 days scratching like crazy because nothing they give me works and my hand still hurts. Now, I hope that I’m correct when I say that I am a logical, intelligent, and reasonable adult. Except this particular Saturday morning when I look in the mirror and the red dots are still everywhere. I knew they would go away eventually but that Saturday I started thinking, what if they’re wrong? What if they NEVER go away?! What if I have to live like this forever! I’m never leaving the house!!!

As you can tell, I am headed towards the breakdown. So my doctor walks in that morning and asks me how I am. Now, I love my doctor by the way, yes he’s my doctor crush, and every time I see him my face totally lights ups and I’m always cheery and smiley around him, I‘ve never cried in front of him. But this morning I start trying to talk and I just start crying. All this time I’ve tried to stay positive and yeah I’ve gotten sad and I’ve cried but I’ve never felt that feeling of just complete misery. I was just completely miserable and unhappy. And I tell him it’s because of the itch and the IV. He hugged me and told me he’d try to make me happy again. Have I mentioned how I’ve turned into a child? So he orders that the morphine be removed, cuts my antibiotics in half, orders a stronger steroid, and tells me that if I start eating he’ll remove the IV nutrition that night. He thought maybe I was on too much medication. Isn’t that funny? Uh oh, she might be on too many drugs, hence the hysteria. By the way, my morphine machine? I was sad to see that go.

Needless to say, I started making myself eat that same day and the new steroid worked! No more itch. Then I get this new nurse who is super nice and practically insists she take out the offending IVs. By the time she took them out, my hand was swollen and I could barely move it. So she calls this nurse who it turns out is an IV genius and she gets a new line started on my left hand with no pain and no crying. By Sunday I had no more itch, the dots looked like they were fading, no more fevers, no more IV pain…. life was looking up. The doctor comes in and he’s happy to see that I am happy again. Then he cuts the rest of my antibiotics until there’s only one left. Monday morning he tells me I can go home the next day.

At this point I’m torn between thinking I just want to get out of here and I don’t think I’m well enough to go yet. But the former beats out the latter so I go home on Tuesday. According to me, my only problems are that I’m still really weak and just want to sleep all day and I’m still having problems eating. This is why I’m having problems eating: I lost my sense of taste. Yes, you read right. No taste. I’ve now had 2 discussions about the relationship between taste and smell. I can smell, but I can’t taste. So texture has become extremely important. The worst part is eating something you love and realizing the texture grosses you out. Examples: pizza, lasagna, and my favorite candy in the world, salsaghetti. Salsaghetti is a kind of Mexican candy. It’s watermelon flavored ropey gummy candy (like spaghetti) and then it comes with a separate package of this tamarindo and chili flavored sauce that you’re suppose to pour on. It is delicious!!! Except when you can’t taste so it just feels like slimy gummy thing. Pizza texture: gross. Lasagna texture: gross. I haven’t felt like eating any of them since. So my all time favorite, Flaming Hot Cheetos with real lime juice poured over it? I refuse to eat it until I know it’s safe for me to enjoy. That’s one experience I can’t ruin.

So anyways, I went home Tuesday, which actually was last week Tuesday. Oh and he was right, Tuesday I woke up and the dots were all gone. When I got home I literally ran to my room and feel asleep for 4 hours. Tuesday, Wednesday, and Thursday were all the same. As soon as I got home, I started getting splitting headaches, 1 in the day and 1 in the night. I started getting chills that never developed into full on fevers because of all the Tylenol Extra Strength I was popping for the headaches. My stomach always hurt. All I did was lay in bed all day, I neither the will nor the energy to do anything more than watch TV. Finally Thursday night I developed a fever but my head hurt so much I just took some Tylenol to get rid of it. They’d told me before that anytime I get a fever I need to go straight to emergency. But I didn’t listen and I just called in the morning and told them what happened. They told me to just come in and that my doctor would see me. I get there and tell me why I start throwing up while I’m with the doctor. So he suggests that maybe I was let go too early and that I just need to be admitted again. So Friday I was readmitted to (or is it into?) the hospital.

Kinda sucked because my friend Adri was coming to visit that same weekend. But of course she didn’t care and she spent the weekend with me at the hospital. It was really nice and it felt really good to have someone to joke with about my hospital experiences. She left on Monday. Anyways so this whole week I’ve been back on tons of antibiotics, apparently I had an infection. I forgot to mention, while I was home I also started getting another weird rash. They would start out as red circles and then they’d dry out in the middle. When I was home I had it on my chest and then realized Friday morning that it had spread to the back of my head. While I was in the hospital it spread to my stomach, my arms, legs, and my back. What sucks is that some of them itch, the bigger ones. They could never really tell me exactly what it is. They assume that I’m having a reaction to sulfur based antibiotics. Well, yesterday they did a skin biopsy and they’ll let me know hopefully in a few days. Yes I actually still have it. I’m not worried though, I assume it’ll eventually go away.

Let me try to organize myself again. The headaches went away sometime on Tuesday. They just mysteriously left. I think they were stress headaches. I’m just glad they’re gone. The rash spread but again, I’m not too worried. I’ve already freaked out once over a rash. Eating has become much better. A nutritionist gave me good advice about what to eat and what to avoid to help my stomach get back on track and it’s worked. Plus my sense of taste is coming back (they actually told me it was a common side effect of the chemo and that it would eventually come back but that I just had to be patient and keep eating). Today I was even hungry! I’d lost my appetite this whole time but today was the best day so far.

So slowly my energy has been coming back to me. Again, today being the best day so far in about a month. Like I said in the beginning, I didn’t come home to sleep and I actually went for a ride too. This one nurse totally gave me a lecture while I was waiting for a room. She reminded me that I’d just had a transplant and that I needed to take fevers seriously, they were signs of an infection. She also reminded me that I didn’t have to grin and bear uncomfortable feelings or sensations (headaches and stomachaches), but that I needed to call as soon as I had a problem. I realize that she’s right. Really, my problems don’t get better, they just get worse.

So I haven’t mentioned how I’ve lost all shame. The hospital has made me shameless. At first I was really into privacy and keeping the more embarrassing problems secret as long as possible. But I realized even if I whisper it into the nurse’s ear, she tells my doctor who writes it in my chart and then every person who walks in asks me about it. It happened both of these last 2 times and it is just so embarrassing it’s become funny. I’m always like, that is no longer a problem so stop asking me about it! I’d get into detail but I’m trying to regain some of my decency back so I’ll just stop at that.

I have to be honest, this was rough. But then one day, a nurse told me about a guy who’d been at the hospital for 3-4 months for an allo (not his own, mine was an auto, my own) bone marrow transplant and how few people would come visit him so she and other nurses would go visit him during their breaks to cheer him up and give him pep talks. Apparently that was 2 years ago and he’s doing much better and just got married recently. All I could think about was how lucky I was to not have to be in the hospital so long and how my mom was with me the whole time. I thought about all the times I’d said that I couldn’t have done it without her and I thought about the nights I wouldn’t go to sleep until she got there. Then there were the nights I’d wake up and look over to make sure she was there and it would put me at ease to see her sleeping form. And I thought about how lucky I was still. Things could always be worse. They can always be better, but in my situation, they can be a whole lot worse. I’m not there and for that, I’m lucky. Anyways, it was actually an inspiring story and made me realize that I shouldn’t throw myself pity parties because others have been to darker places and they’ve come out all right.

You never realize how bad you felt until you feel much better. This time that I’ve been discharged, I just feel so much better. And it’s nice to realize that as time passes, I will continue to feel even better.

On a sadder note, last week I found out that my godmother’s son died of leukemia. He had been diagnosed at 18 and he died I believe a couple weeks before his 22nd birthday. His death I think haunted me last week. Could explain what triggered my stress headaches, his brother called me the day after I was discharged and that same day I had my first headache. Maybe I finally dealt with his death and realized that just because he was young and he still died doesn’t mean that I will.

It’s been an eventful couple of weeks. I even forgot what Day + number it is. I’ll figure it out tomorrow. Think I’ll go to bed now. My bed.