Om nom nom nom

So, after almost 80 days in the hospital overall this summer, I am finally home for good. I hope. Aaron hopes. The doctors hope. Everyone hopes! It’s been a crazy few months, but hopefully I’ll be going in for a bone marrow transplant (gulp) fairly soon, and then I’ll have monthly chemo treatments, but no more staring at four walls going crazy to get out. It was especially awful this last time (for 50-something days!) because I was in respiratory isolation–they were afraid I had tuberculosis, though as my doctor said he didn’t REALLY think I had it because if I did, with how low my white blood cell counts were, I would have been dead of consumption ages ago. But that didn’t keep them from enforcing the isolation full-force. -.-

Anyway, I’m home and obviously haven’t exercised much, due to general weakness and malaise, but I am down from 256 when I went in to 198 now. That’s freaking insane. A loss of almost fifty pounds in three months? Unheard of. Cancer is, like, the best diet tool ever. Too bad so much of it is muscle loss.

I like being home though. It’s really nice.

I know I very rarely pop up, and I don’t read nearly enough blogs while I’m here, and I’m sorry for that. Right now I’m in the hospital again, and have been for over a month now, because the first round of chemo I had didn’t work.

Anyway,  the main reason I’m here is because my fiance signed us up to do the Light the Night Walk for our anniversary, and I was hoping that maybe some kind souls out there would like to donate to a good cause (funding blood cancer research and support for blood cancer patients-like me!-and their families). Here’s the link to donate.

I’ve dropped to 218. I’m having a very difficult time eating, and when I do eat, it’s hard to keep it down. I’m actually disappointed that I’ve dropped (can you believe that I’m saying that on this site??) because I really do need to keep my weight up to fight this cancer. When I went into the hospital a month ago I was 247 and now I’m 218. That’s almost 30 pounds in one month. Not healthy at all. I really need advice on food that’s healthy, easy to prepare, and easy to keep down when you’re feeling ill. The most important part of all that is that it’s easy to prepare, because it’s incredibly difficult for me to get up the motivation to do anything at all, let alone cook. I’ve had days where I looked up at the clock and realized it was already 4:00 and I still hadn’t eaten anything–moreover, I didn’t WANT to eat anything. So any advice would be appreciated.

Lord, if anyone wants to lose weight quick just get leukemia. -.- I’m down about twenty-five pounds since I went into the hospital. I started at like 247 and I’m down to 221.4. Is that about 25 pounds? I don’t know, math isn’t my strong point. Anyway, I disappeared for awhile because I got re-admitted to the hospital and had a couple of very bad weeks where I just didn’t have the motivation to get online and update people about what was going on. I had some sort of infection and I was running fevers like crazy and it just wasn’t good. I barely even remember the first week I was in there it was all so bad.  But now I’m out until my next round of chemotherapy, when I’ll be admitted for another five days because my oncology office doesn’t have the resources they need to give me the specific chemo I need. The hospital does, so I’ll be re-admitted five days out of every month for my chemotherapy. Fun! At least I know to expect it though. So that’s good. And twenty-five pounds is pretty nice too. >.>

I’m home! And I weighed myself this morning and Good Lord, I lost ten pounds while in the hospital. I know it’s not a very good thing because with cancer you’re actually supposed to try to maintain your weight, but I am still really glad to be out of the 240s. >.>

A couple of my friends came over last night and we had a head-shaving party. It was a blast. I don’t think I’ve laughed that much in ages. The final style before the final shave was a mohawk. I must say, I look pretty darn good with a mohawk. And I look awesome bald. I have an awesome-shaped head, if I do say so myself. I don’t know, you guys tell me if I’m just conceited.

I am so incredibly glad to be home. And thank you to everyone for the good wishes/prayers/etc. You guys are awesome.

I know it’s been ages since I’ve been on here–my computer died and we just managed to get a new one. A lot has happened since. I’m actually in-patient in a hospital right now, hooked up to an IV and all kinds of shiz, because alas, I have leukemia.That would explain why my weight loss was doing so great without me even trying. *roll eyes*

About three weeks ago, I started feeling pretty vaguely sick. As I hadn’t been having any illnesses whatsoever since I went into remission from the lymphoma, Aaron and I both assumed that it was simply the flu or a cold and would go away soon. The only real symptoms I had at that time were headaches, which are pretty common with me, and a general feeling of fatigue, as well as a low-grade fever. I also didn’t have much of an appetite. Anyway, a couple days later Hazel bit my hand lightly, but managed to break the skin, and the bite site bruised up really impressivel

y. That was odd because not only was it a really light bite,  I also have really deep veins and hardly EVER bruise. So when it bruised it was a bit confusing but not very worrying because a lot of people bruise when they get hit or bit. After that though, I started noticing a LOT of random bruises. I had absolutely no idea where they were coming from–I wasn’t running into things or anything. I would literally wake up in the morning only to find two or three new really bad bruises. We started worrying a little bit more but thought that maybe with the “flu” that I had I was bruising easier. When the fever stayed between 99.2 and 100.7 for about a week, we started to get really nervous. I was also getting an odd rash in random places–it looked like little pinpricks. At first I thought they were mild chigger bites, only they didn’t itch at all. Then all of a sudden a large, discolored lump appeared on my left breast–the same breast that swelled up when I was diagnosed with lymphoma. When Aaron saw that he put his foot down and said we were going to the ER. I didn’t really want to go because I was still hoping it was just the flu and was in a bit of denial, but I did the responsible thing and went anyway.

When we walked into the St. Vincent’s ER (St. Vincent’s is the hospital that I was treated in-patient at the first time in the beginning) and I sat down to register, I was filling out the paperwork and explaining some of my symptoms and history to the receptionist. I wasn’t even halfway through with the paperwork before they rushed me into triage. Obviously at that point Aaron and I are both really nervous–after all, not waiting in the ER at all is pretty freaking scary. They do all the triage stuff and within fifteen minutes I’m laying in an ER bed. Now Aaron looks really scared and I’m about to cry, but we’re both hoping that they’re just taking precautions because I had cancer before. Obviously they came in and took blood, and when the doctor came in her face was really really serious and she said they were calling Dr. Hunger (my old oncologist). So now I’m thinking it’s a relapse of the lymphoma and I’m about to bawl. The doctor tells me it could just be an infection but they want to be safe. Aaron goes home because he has work in the morning and I figure that even if I have to stay overnight I can just call him and he would come get me then. I think if we had known what was really going on he would have refused to leave, but we were both trying to be optimistic and there really wasn’t a lot for him to do except hold my hand. So he went home.

Literally ten minutes after Aaron left, Dr. Hunger comes in. He looks really, REALLY sober. He tells me it’s cancer, though they’re not yet sure which kind. He tells me that my white blood counts are ultra ultra high. Like, over 300,000. That’s really high, ha. I don’t know what the normal counts are because now my counts are really low, but I know that he was really really upset about it. Also, my potassium levels and platelet counts were dangerously low. So they hooked me up to an IV and got me started on some potassium and told me I would most likely have to stay overnight. Dr. Hunger told me that that the next day I would have to have a special operation to take out some of the white blood cells (I now know it’s called leukophoresis, but I didn’t know at the time), so I would also have to have an operation to get a special catheter put in so that they could get the cells out. By this point I am crying, but I really have no choice. So they admit me and put me into a room with an awesome view, and I spend the night freaking out about having cancer again and having to have more operations. Luckily they had taken an X-ray and found that there was absolutely no fluid in my lungs or around my heart this time, so I got to skip that ordeal. Even with everything I’ve gone through these past couple years, that freaking lung draining is still the most terrifying procedure I’ve ever had.

The next day they send me in to get the catheter put in. I’m laying there crying and scared because I hate operations--I’ve had like a million and I know the anesthesia always works wonders, but I’m still so terrified before they start. But I had a wonderful team that helped calm me down, and I swear I had the best anesthesiologist ever. The anesthesia knocked me out–I’m sure it also had something to do with not sleeping for at least 24 hours beforehand as well, because later I had a different operation with the same anesthesia but was awake–and when I woke up I was heading back into my room with a view. I honestly can’t remember whether they did the first round of the leukophoresis that day or the next, but whenever they did a friend of mine (Jess) came by to visit, which was nice. Unfortunately, I think my blood pressure dropped pretty badly the first time around and I wasn’t the best company, ha. I was absolutely terrified and crying again, thinking I was going to die, but the technician doing the leukophoresis was great and Jess held my hand and we all got through it. I had the procedure done again the next day and it went a lot smoother. Apparently it’s always more difficult the first time around. Makes sense, really.

Once they did the leukophoresis a couple times, my white counts dropped dramatically. So dramatically, in fact, that now I’m neutropenic, which means that I don’t have ENOUGH mature white blood cells (neutrophils, if you want to get specific) and I’m incredibly vulnerable to infection. No fresh fruits or vegetables, no pepper (PEPPER. My favorite spice EVER), no flowers, and people have to wash their hands crazy good and if I leave my room I wear a mask. People that are sick are not allowed to visit me unless they wear a mask, and if they’re really sick they’re not even allowed to then. I never thought I could crave an apple as badly as I have been. I swear, as soon as I’m allowed to I’m going to go to Subway and order a Veggie Delight sandwich, and then I’m going to eat the biggest fruit salad EVER.

Dr. Hunger came in and told me that I had acute lymphocytic leukemia. I started to cry. I mean, you hear the word leukemia and it’s absolutely terrifying. Leukemia is the cancer that almost everyone has heard of, and I swear the first thing that went through my head was “Oh my God, it’s like A Walk to Remember, I’m going to die.” But then Dr. Hunger started explaining about it and telling me that it’s sort of like my old lymphoma in that it’s an easier one to treat than you would expect. I would have to stay in-patient at the hospital for about a month (OH MY GOD A MONTH), but he was very confident that I could beat it. I have to go through induction chemotherapy, that’s why I have to stay at the hospital for so long. I finished Day 11 today. Anyway, he explained about it and told me that it was also like the lymphoma that I had in that it was acute and spread very very fast–which works for us. If it spreads ultra fast, then the chemo works extra well because the cells die faster. And since I responded so well to the chemo for lymphoma he was confident that I would respond just as well to the chemo for this. Which I have. And I haven’t had to take prednisone orally, which is definitely a bonus.

A couple days later, they took out the original catheter that they put in because it was so bulky and huge, and put in a triple lumen catheter (TLC) so that they could hook up multiple lines and draw blood and stuff without poking me, since I seriously have the worst freaking veins EVER. Every once in a while they still have to take blood out of my hand and I swear I start to cry every time. The steroids they have me on also raise my blood sugar, so they have to check my sugar before every meal and bedtime, as though I was diabetic. If it’s too high (for example, today before bed it was 227), I get stuck in the belly with insulin. Luckily the insulin needle is so small that I literally can’t feel it. That experience has redoubled my determination to never become diabetic!

Nothing much has happened since, really. I hang out at the hospital, eat my food, walk around the ward because I can’t leave the floor without a special grounds pass (although they gave me one over the weekend, which was really nice). Aaron comes to visit every night, and Kenzzie comes to see me on weekends, and James and Jess still come by every week for date night, but overall it’s pretty boring. My nurses love me because I’m such a good patient. I mean, I literally don’t need anything unless my IV starts to beep. I’m in no pain, I can move around all by myself, and emotionally I’m doing pretty well. I was almost discharged today, but then the doctor found out that I’d have to ride the bus to get to the hospital, and since I’d have to come back every single day fairly early in the morning, he wasn’t comfortable with it, especially with public transportation and my low counts. He decided that I would probably be in here another three weeks. I know that it’s the right thing–safety and getting better and all that–but Lord knows I was so excited thinking about seeing Hazel and cooking my own meals and sleeping in my own bed cuddled up with Aaron. But it’s just something I’ve got to do. At least I’ll appreciate all those things more when I finally do get out of here.

Tomorrow I’m shaving my head, because I’m going to lose my hair anyway and it’s just a bother having it now. It’s always greasy and gross, and when I take a shower it gets in the way because I have to cover up my TLC and the water from my hair drips into the guard thing and makes me really uncomfortable. At least once it’s shaved I’ll just have to soap up my head. Jess actually cut her hair really short to support me with it today too, which is AWESOME. I am glad that I have such a wonderful support network. You guys all rock.

Amanda

PS: Sorry about the novel-length entry. A lot happened!

I haven’t been on recently because I’ve been mega busy, but I finally have a moment to myself to come on and update and check out the blogs. Awesome news: I found a pair of pants tucked away that haven’t fit in ages, so I pulled them out and tried them on for giggles and kicks. AND THEY FIT. I’m wearing them now, and they’re actually comfortable! They don’t fit as in, “I can squeeze into them but I can’t really breathe while I wear them,” they fit like, “Oh my God I could wear these all the damn time.” My weight hasn’t changed any time soon, but if I go by the fit of the clothes, I’m doing awesome.

So far today I’ve eaten Greek yogurt with strawberries and drank water. Lunch is going to be red beans and rice, and dinner is chicken tacos with Mexican corn.  Kenzzie and I will be leaving for a walk shortly.

Also, I need some new meal plans! My brain seems to be hitting a wall every time I try to think of meals for next week and we’re going shopping today–I don’t want to pack up on convenience foods just because I can’t think of what to cook!

I’ve eaten about 590 calories so far. Not the best calories by any means, but we’re running out of food again. Aaron gets paid today though, so we’ll most likely be going grocery shopping tomorrow.  As for exercise, I went for a walk (about 1/2 mile), have done three loads of laundry, and did 25 wall pushups so far. I’m planning on doing sets of 25 throughout the day. I know they’re not nearly as good as regular pushups, but I’m not strong enough for those yet! I’ve never been good at them and with all this extra weight, I just plop. And jiggle. And cry.

Food Log:

1 cup corn flakes with 1/4 teaspoon sugar–appr. 135
2 turkey hot dogs/buns/mustard–appr. 450
1 pickle–appr. 5

I’m having such a hard time staying on track. My moods have been going up and down, and when they’re up I want to eat to celebrate, and when they’re down I don’t have the energy/motivation/desire to cook healthy and get out and exercise. My lack of self-discipline is definitely showing on the scale–I’m moving back and forth between 245 and 247. At least it doesn’t go any higher than that, but I want it to go down! I know it won’t go down if I don’t put in the work, though. And when I think about that I get all upset with myself because I ought to be putting in the work and I’m just too lazy. And when I get upset with myself I eat worse and more! I need to buckle down and put in the work. I’ve done it before and I can do it again, I just need to remember to log in and hold myself accountable everyday. I need to cook more and eat convenience foods less. I need to eat more vegetables and less sugars. I need to walk everyday, at least down to the mailbox, preferably around the circuit. I need to not wear myself out and then relapse back into inactivity. In short, I need to get my ass in gear.

Thank you to everyone who congratulated me! I’m still sort of running on a high from it all, but now I’m a bit more calm and am actually getting some work done, cleaning-wise. I emailed my mom the picture of the screenshot and asked her if she could figure out the riddle Aaron gave me. She still hasn’t emailed back, so I guess she hasn’t figured it out yet! And I’m calling my dad and stepmom tonight to tell them. And tomorrow Aaron is taking Kenzzie out for ice cream or something to tell her about it–we know she’ll be excited, but I’d still rather he told her alone that way if she has any questions or concerns, she can tell him about them without me standing there. When my parents got remarried, they both told us with the new stepparent-to-be standing right there, so I was embarrassed to ask any questions out of fear of hurting the person’s feelings. So Aaron’s telling her by himself.

Anyway, I was too excited to write about weight loss stuff yesterday, but today I can! I’m back down to 245–if I’m 245 tomorrow I get my new mp3 player! Exciting. :)  So far today I’ve only eaten breakfast (water and a pear), but I’m about to look around and see what lunch is going to be (most likely roast potatoes, honestly), and dinner is going to be… something, haha. It really depends on whether Aaron’s friends are coming over tonight or not. If they are, then I might just make a veggie stir-fry, and if they’re not then I’ll probably make… a veggie stir-fry. Hahaha. For exercise, I’m finally finishing rearranging and cleaning the house, and I’m going for a walk. And we need to do a bit of grocery shopping tonight, so that’s parking in the back and going to the back of the store for milk and stuff.