I thought I would share some good news about my improvements but at the same time, I feel like I should share the plight of others. The sad news is really about the people I’ve met and it’s been a true learning experience.
Starting with my improvements, my hair is starting to grow back. I have sprouts on my head. They look pretty dark and I’m sure it will be a while before I’ll have a full head, but it’s nice to see that it’s coming back. This should be the last time I’ll lose my hair. I think 2x is plenty :0
I'm not sure you can really see the sprouts, but believe me they're there.
My strength and balance have improved; Beth, my PT, says I need to work on my hip flexers. I have trouble bending and squatting low; honestly, I can’t get up again without help from someone or a wall. For me, staying in PT is good news because there was a good chance that insurance would not approve Beth’s justification for keeping me there another 4 weeks. Going to PT makes me work out; I like and possibly need someone encouraging and guiding me. She also makes sure I’m doing the exercises correctly, and at home, I often worry that I’m doing something wrong. Also, my hand manipulation is improving; my handwriting has become so much better as long as I take my time. I think all the card writing and sewing has helped.My most recent improvement is that I’m managing to read a book. It’s the one thing I really haven’t been able to do this whole time. I could handle a magazine article (usually), but a novel was just beyond my concentration abilities. So this week, I decided to try and I’ve managed to read a few chapters at a time. Luckily the chapters are short, which I think is really helping. I’m reading something completely frivolous; no pen in hand as I go. Don’t judge me but I’m reading Pride and Prejudice and Zombies and it’s actually keeping my interest because so far it’s pretty well written. There’s an awesome new and used bookstore nearby called MOJO; we’ve been there several times and have found some amazing finds. We’ve filled a bookshelf!
The last piece of good news I can think of is that we have gotten to know our neighbors at the apartments. We know Terry who’s across the hallway and James and caretaker live next to us. Last night, mom and I baked and brought them care packages of baked goods. It was fun and both our neighbors seemed happily surprised. This morning we saw the neighbors next to us and James’ caretaker said they had enjoyed our cinnamon cookies. Good news.
Sadder news would be the stories we’ve heard. Mom originally met Terry when she saw him fall while taking out the garbage. She told him not to move. It wasn’t his first fall; he already had a bandage on his face under his eye. Luckily, when we saw him at the hospital yesterday, he looked healed and told us that he has not fallen lately. Falling seems to be a problem for many patients. I remember at the hospital that several patient doors had signs that stated “Fall Precautions.” I haven’t fallen here, but I did fall 2x back home. It’s scary; my legs literally gave out without warning and down I went.
Our other neighbor James is having his second BMT. He had an allogenic BMT where he received his own cells and within 6 months, it was clear that it had not worked. Now, he’s a few weeks out from an auto BMT (like what I received) and he’s doing pretty well so far, but he has to go to the BMT clinic every day and it seems he always has to get something. Yesterday it was a huge bag of saline.
So far that wasn’t too bad, but here it comes. We often see the same people that we were with us at the hospital. These stories are much sadder. There’s an adorable Mexican couple (I feel bad that I don’t know their names) who were back in the hospital when we were there because the wife had gotten sick. They are such a nice couple that their troubles are difficult to hear. One of the things people have to realize that when you have cancer, it’s a LONG process. I think the general public does not realize that we’re talking years of recovery with BMTs, so most people we meet have been dealing with their health for months to years. We know two husbands who lost their jobs almost a year ago because they needed to care for their wives. The Mexican husband is one and a man named Allen is another. Financially, these couples are troubled and have extra worries that they really do not need at a time like this. I really am blessed. Allen and his wife have it worse because they’ve lost their house! They have nothing to go home to and Allen has no job in this economy. Plus, Allen’s wife has had it bad. You might remember that my hand burned; well, Allen’s wife really burned. She experienced the burning and blisters on her hand AND feet. She literally could not walk, and although she’s better now, when I saw her walk, she did so with great difficulty. Heartbreaking. Then, there’s Joe and his wife. She was back in the hospital when we met them because his wife got pneumonia. She was so bad almost the entire time we were there, and Joe is a handful – often getting in the nurse’s face (we heard several nurses say “oh, no” when they were assigned them). He has a business that is not doing well and no insurance. In fact, due to job loss, most have no insurance. The good news is that Moffitt helps as a non-profit organization. They told me that if my insurance did not approve my BMT, I would still get it. They would not deny someone a life-saving treatment, so I know they’re helping these couples. They even provide free housing at a hospital run facility called “Hope Lodge” if you can’t afford the apartments. A lot of the people we know stay there and are grateful to have a place to go. The thing is they can’t do anything for their lives beyond BMT. So someone like Allen and his wife literally have no home to go to; how do they survive beyond this trial? Then, there are individuals like the 20-something boy who received his transplant the same night as me. He is defiant and can be rather mean to his mom. In fact, mom caught her crying and talked sternly to her son; my mom is bold. He did the stupidest thing too. He cut one of his hickman lines! That’s the device I have in my chest with three lines that had to be surgically placed and leads directly into a main vein. You shouldn’t have anything sharp close to it; infection is always an issue. He had to have it removed but we don’t know if he had it replaced because we haven’t seen him lately.
This is my triple Hickman. It's used to take blood and give meds. It's so vital.
The last couple we often talk to we used to call “the Asian lady in the silk pajamas” because that’s what she always wore when we saw her in the hospital. She’s a cute older lady named Ellen with a sweet pudgy American husband. We don’t know their financial situation, but she’s had a rough time physically especially with food. She had a smell precaution; basically, smells made her sick and we found out that she still has trouble eating, which is crazy. She left the hospital a day before I did. I’m gaining weight again because I have to eat so much more in order to take all my pills. I don’t really like that; I had gotten back to my pre-pregnancy weight, but now I’m a several pounds over, but that’s minor compared to Ellen’s current issue. She retaining water; you can see that her belly is extended. She not a heavy lady. When we saw her yesterday, she told us she was probably going to have the water physically removed – ouch! Needle in stomach and draining it out; I really felt for her. After we left, mom said it would be painful.
I am so grateful for what I have. No matter how bad things appear, it always seems that someone has it worse – no joke. Pray for those at the hospital because there are so many of us. It’s boggling to see how busy Moffitt is and it’s so BIG. So many are suffering with cancer as patients and as caretakers. I don’t think anyone can completely understand it unless you’ve seen it, smelled it, EXPERIENCED it.
I hope I didn’t depress anyone but Joel said this was worth sharing because we just don’t realize sometimes how blessed we are, especially while facing our own trials.
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Keep pressing on Jamie! Still praying for you!