I haven’t eaten anything since October 27th. I’ve been promised that that will remain the case until at east November 11th. The doctors want my gut to rest.
And you want to know what’s even better? When I come back to eating, I don’t go to a clear liquid diet as usual. No, my doctor wants me to eat baby food. Like the kind you get out of a jar that’s all mush. Jealous much? -_- Why does it have to be so close to Thanksgiving? Guess this is what I’ll be eating: and
“To see broken eyeglasses in your dream indicates that your vision and perception is impaired. You are not seeing the facts correctly.”
No, I am not doing “alright,” but yes, I am trying.
Although physically monotonous, yesterday (Thursday) tore me apart emotionally.
I never expected the process would go this way, that the transplant would mean this much, that I would be battling demons at every corner, only hoping to see glimmers of light at the end of each path. The bone marrow transplant sounded like it would be a breeze (as far as cancer treatment goes) and that recovery would mean 3 months of social isolation at worst. I imagined sitting around, fundraising, finishing schoolwork, learning how to cook, writing my book, reading, watching movies, etc. Wrong-oh. Recovery has been, by far, the most difficult, painful, mentally draining, humbling experience I have ever known.
In other news…
The word responsibility is creeping up again, haunting me and trying to tell me that I’m not good enough.
- Food: I feel like this concept of food just keeps circling around my head, taunting me now for weeks on end. It began in the hospital when I was NPO (nothing by mouth) for nearly 2 weeks. I slowly advanced my diet to clear liquids, BRAT (i.e., bananas, rice, applesauce & toast), and then to GVH advanced (highly restricted diet - basically, nothing I typically eat, short post). Now I’m back in the hospital with a food bag consuming clear liquids to help rest my still-GVH infected gut. So what’s my responsibility here? I feel like everyone keeps getting on me about the way the I am eating - Am I eating enough? Am I eating right? Am I making sure to not eat too much? Am I trying something new everyday? Am I staying away from bad foods? Am I being cautious enough about new foods? Am I keeping track of foods that cause my stomach irritation? Am I trying those foods again at a later date? Am I getting enough protein? Am I eating lots of applesauce? If not, I am only hurting myself. If I’m not getting better, it’s my fault.
- Pills: Every morning the nurse arrives in my room with a bucketful of medication. I went home with 12 separate prescriptions, many of which need to be taken at least twice a day, some of which involve taking 4 pills at one time simply because the pharmacy didn’t have larger doses (e.g., I have to take 4 Acyclovir, a antiviral, twice every day). I hate taking pills; it feels unnatural. God gave us fruits, vegetables, and all sorts of natural resources so that we could care for our bodies. We genetically modified them, decided to eat crappy foods, and destroyed our bodies. This is not to mention that it’s just difficult to swallow pills, especially when they taste awful and sit in my stomach oddly. I’ve been assured many times that all these medications (including 3 different steroids that are degrading my body) are necessary for my recovery. I have been tempted on many occasions to just dump the pill buckets when no one is looking, but once again if I’m not getting better, it’s my fault.
- Physical therapy: I can’t explain the mental distress it causes me to need physical therapy. It’s one of those severely humbling moments. For 14 years of my life, I was a gymnast. Not only a gymnast, but the strongest on my team. Now, I have trouble sitting myself up in bed. I cannot stand up off the ground or climb even one step. The physical therapist says I’m not in horrible condition, but I’ve certainly lost a lot of muscle and need to rehabilitate myself. However, I might not be weak enough to send to the rehab center, but that’s another story. For now, I have been given simple exercises and heard that call of responsibility once again. “Do your exercises or you’ll just continue to get worse. This won’t make you stronger, but will keep you from further degradation.” He doesn’t want me walking too far until some of my muscles are more stable, but doctors want me up and moving, out of bed. No one wants to see me lose it all. If I’m not getting better, it’s my fault.
- School: School is just a mess. To begin, I took Incompletes in all of my classes from Fall 2010. This means I have one year to finish up the required coursework. My thought was that I would have the BMT in February and be home free and living life again by June at the latest. We all know that didn’t happen. I never really started on any of the coursework because it seemed the BMT was right around the corner and I was so incredibly stressed by life that school was just a side project. As it turns out, my work is due in a little less than a month and I don’t even understand how I’m going to deal with it. If I don’t finish, I’m pretty sure I get horrid marks on my account. This would also meant that I have to pay for 16 credits worth of classes that did nothing for me academically and that I would have to retake them whenever I restart school. Moving onto my next point. I should graduate at some point. Not including the Fall 2010 classes, I only have 2 semesters remaining, one of which is student teaching. I can’t even imagine going back to school right now, about returning to the life of teaching, the life I don’t intend to pursue. I would be wasting away time, effort, money, and opportunity if I gave up at this point. If it all comes crashing down, it’s my fault.
- Finances: Can we just say that I have not done a great job with my finances? I mean, sure, I’ve been screwed over. My insurance company spent 6+ months jerking me around to tell me I had a pre-existing condition and that they would take no responsibility for any charges. FUN. By that time, all my medical providers hated me because they want payment within 6 months of treatment. So, I wrack up more than $60,000 worth of debt without friends in the payment community. However, there is hope! My old hospital offers this charity program where they will pay for the bills the insurance company rejects and guess what? A lot of my providers now qualify for the program. But you know what? I’m in the hospital when I finally get the paperwork and don’t get it in on time because, ya know, I’m having chemo, receiving a new immune system, and partying like a rock star. I’m noted as “non-compliant,” without being told, and at least $40,000 is sent directly to a credit agency for collection. Fortunately, something happened and they’re looking at the case again, but I’m not getting my hopes up. As a side note, I also failed to get paperwork in for my Social Security Disability because I was in the hospital. When I had originally seen the return date, I figured I would be home free by the time it rolled around, so I just put the letter in a ‘look at me later’ pile. I found it the day everything was due and called the office at 4pm - an hour after they closed. Fortunately, we got around to talking to someone and I should be okay, but if not, I lose out on $250/month. My new hospital is also disgruntled with me because I set up a payment plan months ago and then only paid the first installment. Now why did I do that? Because they never sent me another bill. I’m young and stupid and don’t know what to do and I forget. So, they call me, leave a “we need to talk” message, and give me a bad phone number. Thanks! Outside of medical expenses, my university is bugging me about paying for classes I withdrew from in Spring, claiming that I never turned in the proper paperwork for a medical repeal. I have the confirmation e-mail they sent me, but it’s still a lot to deal with, especially when I forgot to unregister for Fall 2011 classes, which are now beyond the point of withdrawal, meaning I’m supposed to pay the university in full. I sent in another medical appeal, but the case is still in a tight spot because I have unresolved issues from Spring semester. All in all, I just hear and feel this financial burden taking over every aspect of everything without any relief. I’m incredibly thankful for some of the people who have stood up in my life to help out by making phone calls, organizing a fundraising event, and other tasks, but it still just feels like everything is on the edge of completely falling apart and you know what? If I end up bankrupt at 22-years-old, it’s my fault.
- Stay strong. Keep smiling. Don’t give up. If I’m not getting better, it’s my fault.
Honestly, I have trouble thinking of just one thing in my life that is going right at the moment. Even my family and friends are being affected by serious life situations that are totally out of their control (e.g., my mom just found out she has to move to Washington, D.C. because of some stupid situation with her fiance’s company). Celebration of the week/month has been that my brother passed his nursing certification and is now an RN. Very, very good news, but he needs a job, stat.
I’ve been asked so many times what I need and what could be done for me, but honestly, I have no idea. I have trouble seeing hope anymore. The joy is leaving my eyes. I’m realizing that some of my dreams may not come true simply because of my health and I’m scared of losing them. I’ve been fighting the idea of this relapsed cancer for over a year now.
The battle seems never ending, but it’s my responsibility to never give up. Only I can win this war; no one else can fight it for me.
The LORD will fight for you; you need only to be still. (Exodus 14:14)
So, was re-admitted to Karmanos last Thursday because of weakness in my legs when I showed up for an outpatient appointment. I spent one day in ICU because of low blood pressure and high white blood cell count. They pumped me full of fluids and gave a broad spectrum antibiotic.
Still hanging out at Karmanos.. a week later. The doctors originally made it sound like I would be here for about 2 days and then I would be sent to this rehab center to regain my strength. Ya, that hasn’t happened.
What is happening?
- My legs and feet are incredibly puffy from all the fluids I received to increase my blood pressure in ICU.. as in, like, painfully puffy and gigantic. My left arm is also about 2x the size of my right arm. In other news, my face is huge from steroids. I wish my body could just choose a shape. When I came in originally, I was 140 pounds. ICU pushed me to 160. I then went on steroids and whatever, losing muscle and water weight until I exited the hospital at 119 lbs. More ICU liquids pushed me back to 145 and I’ve lost about 10 of it so far. My skin was not made to stretch like this.
- I can help decrease the swelling by eating more proteins and just eating more in general, but then there’s been the whole issue that my stomach doesn’t always like it when I eat. Oh, and the doctors have put me back on a clear liquid diet for a little while.
- I had another scope today to figure out how the GVH is progressing. We need to see if it’s the disease or an infection that is causing my ongoing stomach irritation. The scope itself disturbed my stomach and caused bleeding and pain.
- The physical therapist came in yesterday to let me know if/when I’ll be able to head out to the rehab center. Unfortunately, he doesn’t believe that moving onto rehab will be all that helpful when I’m still on a bunch of steroids. It will be a little counterproductive. He kind of talked in circles whether or not I needed to be off the steroids completely.
- To get off the steroids, my gut has to be healing.. We should get the biopsy results tomorrow to find out more.
So basically, I’m in this awkward position where I don’t need to be hanging out at Karmanos (but I feel a little safer here anyway, so it’s cool), but I’m not really allowed to leave. We don’t know what comes next exactly, just waiting for the world to change.
I cannot tell you how many times I have seen an aisle at a grocery store devoted to Breast Cancer Awareness products. We have Breast Cancer Awareness Month. If you see a cancer ribbon, I bet you it’s going to be pink. Yes, breast cancer sucks, but so do other cancers. Just because our society is obsessed with boobs doesn’t mean that we should focus all of our research, support, and funding toward preserving them. Can’t we simply have “cancer awareness?”
Does anyone out there realize how difficult it is to be on a high calorie diet with the limitations of low fat, low fiber and low lactose? Bahhh..
I’m supposed to consume 2100 calories every day, but I’m having trouble even getting to 1000 at the moment. I have to eat small meals or else my stomach hurts and has trouble digesting. I’m only allowed 5 grams of fat per “meal” and I think the same goes for fiber. I’m supposed to shy away from foods with lactose. So basically, every recommended high calorie diet is out of the question.. this is just frustrating on top of other issues I’m dealing with which I might get into later. :sigh:
So nothing exciting has really been happening.. thus the no updating. I try new foods every day and by trial and error find out what bugs my stomach and what doesn’t. It’s always a little nerve-wracking. I recently found a simple, simple Thai dish (rice noodles, chicken, egg, no sauce) that I like from the place down the road.. It’s hard to believe I’ve been on this diet for 10 days already! That’s craziness.
On another (random) note, sometimes I feel like I’m just choosing this diet. Like, I’ve done so many “diets” in my life - eating little, eating organic, eating vegetarian, etc. Sometimes I half-consciously think that I could just pick up anything and eat it and be fine. …and then I remember horrible stomach cramps and lying in bed receiving drugs for nausea and just feeling awful. This isn’t a game. This isn’t a choice.
Anyway, the point of this update was to say that my nurse just informed me that the doctor officially decided to take me off TPN (my nutrients in an IV bag) tomorrow night! It gets changed out every 24 hours at 10pm, so I’ll only have one more bag and then I’m done. After that, the process of getting out of here is simply switching all my IV drugs to pills and making sure they are actually staying in my system and doing their job.
We’re getting closer to release, people!
(Note: this was posted at 7am and I’ve been up since 4).