The phrase I would for today would be “common sense.” When I go home, I can live, but I have to be smart about it. I have to pay close attention to how I feel each day. I have to continue working out my legs. I have to continue my nutrition and watch out for what I’ve been warned to avoid – like anything out of machines such as fountain drinks, shakes, soft serve, etc. I don’t have to wear my mask everywhere, but I need to carry one around at all times and wear it based on the situation. For example, if someone is coughing, I put it on. Basically, it’s common sense.
Joel wanted to know what we do when the boys are sick. Again, common sense, but there’s more. Viruses are a big deal; I have to avoid them. So, my doctor said that if any of us seem to be getting sick, we have to get a RSV swab. It tells you if your sickness is a virus. If it is, mask and distance time; if not, it’s just be careful time. Also, I’m going to have to talk to our pediatrian because my doctor says viruses have to be treated when currently, doctors usually don’t and let them run their course. The problem is that I cannot be around anything “live” like a virus.
I have to stay on pretty much all of my pills for at least a year; some for even more time. We’ll see as I go. The doctor told me today that Gleevac is a year. Yippee (sarcasm)! So expensive chemo drug for a year on top of everything else. I know Joel says not to worry (so I really will try not to) but man, hello co-pays. Several of my drugs have co-pays over $100. Gleevac went up to $125 and it was $100 last time I had to take it. Then, I can’t work to help pay; it makes me feel a little like a burden, but I know Joel would say I’m wrong. It’s just not what I’m used to, but this is one of those situations that is life-changing. With the Gleevac being a chemo drug, we really need to keep Jacob in his own bathroom; ideally, I should have my own, but I will keep it clean for Joel to use as well; he’s an adult and can be careful.
My blood work is good; my platelets are lower than last week but no one’s worried. There’s little else that’s new. I asked about mom as my caretaker and both she and the doctor agreed that once I can do all for myself, she can go home. However, she is not required to stay with me anymore, but I know she will.
So, here’s where I stand… tomorrow, we finally get my fixed car back. Friday is blood work. The weekend is packing. Monday is blood work, chest x-ray, pulmonary test, and an injection (I have to get all my vaccines again over the next year – yuck) – and my last PT. Tuesday is my 90 days bone marrow biopsy (someone tell Lidia to pray for me – she’s my procedure angel 
Wed. is blood work and my last visit with the doctor until April. At that time, I’ll get all the release paperwork. Thursday and Friday will be final prep. Joel’s planning to come with Jacob Friday night and then we’ll all leave Sat. morning. I have to say that I’m excited – and so nervous. I have to find another “new normal” when I get home; we all will, but at least I get to be home again with my family.
I remember being exhausted when Jacob was a baby. Little sleep, constant breast-feeding – I thought I was going to lose my mind. The first night Jacob slept through the night in the crib in his own room, I was beyond ecstatic. Finally, I could sleep and believe me, I was a much nicer person to be around!
What I feel now, isn’t quite the same. I sleep, but not like I used to. Like clockwork, I seem to wake up at 3AM, and I can’t seem to really sleep passed 7:30AM if I fall back asleep. I don’t really nap now that I’m doing better, but I definitely have times when I feel like I could. For instance, I literally fell asleep after doing some more difficult physical therapy exercises at home recently. My PT calls it “Superman”; it looks like swimming in the air and it is incredibly challenging. In fact, I had to work my way up to it with prep exercises. Mom said she came to check on me because I’d been gone so long, and there I was, out cold. I don’t even remember falling asleep.
Mom and I try to go out to stores and malls so I can walk and get exercise, but some days, I swear I can barely pick up my legs because my knees are stiff or my balance is off because my legs feel like jello. My lower half is just not as strong, but I know I’m improving based on my PT. I still can’t get off the floor without having to get on all fours and grip a wall. Bending still remains an issue too, but doing the PT exercises that involve squats and lunges are helping me to build up my endurance and strength.
A lot of this I believe I’ve mentioned before, but after dinner with Andi’s family the other night, it really hit me that my stamina is not where it once was. Mom and I were only at Andi’s house may be 3 hours, and when I got home, I was so exhausted, I ended up going to bed early and sleeping through most of the night. I still can’t believe how tired I was. I didn’t have to do anything. I just talked to the adults and tried to entertain the kids, but it’s not like I had to chase them around – mostly it was talking and showing interest. It seemed easy, but I guess my poor body found it exhausting. So this made me think… how am I going to handle taking care of Joshua – let alone going back to work? I didn’t have to take care of Andi’s kids, but with Joshua… he’s going to require lots of attention. I have a feeling grandma and abuela are going to be helping me out for a while until I can do it myself without the need to fall asleep. As for work, if a few hours of eating, talking and watching kids draw, tuckered me out, I know there’s no way I can handle 5 classes of demanding teenagers. I probably couldn’t last much over an hour. I hate to admit that because it makes me feel weak and vulnerable, but I need to be realistic. I need time to recover – whether I like it or not.
Mom and I spent Monday night with the Peacock family. It was a fun evening, seeing Andi’s parents again after probably a decade. Michael made a delicious meal of baby back ribs and homemade mac & cheese; Andi’s mom brought the green bean casserole The kids were adorable and having a great time with the gifts we brought. Jonah and Maddie got double presents since we had last weekend’s birthday presents plus the presents in the family gift basket. I really should have taken pictures, but I got wrapped up in the moment and forgot.
The Peacock clan has been amazing while mom and I have been here in Tampa. Andi visited me in the hospital. Michael made me a yummy birthday dinner to eat in the hospital. Michael and Andi helped mom move into the apartment. Andi’s gone shopping with us a few times and out to lunch. And, of course, there was last night’s dinner.
Andi and I have known each other since we were 9 year-olds in Mr. Krevis’s (not sure about that spelling) 5th grade class. We remained good friends through middle and high school; I think mainly because of chorus. We sang together for 7 years. We did countless gigs and served as choral officers. Andi as a star and me as backup (which I am totally fine with). Andi can attest to the one time I attempted a solo; I cried and made everyone else cry too. A year or two after high school graduation, I have to admit we drifted apart, going away to separate colleges and finding ourselves. Andi became Andrea and although she kept correcting me, I was never able to take it to heart. I suppose when you’ve called somebody by a certain name since you were 9, it’s a little hard in your 20s to change the habit. I got married at 20, distinguishing myself from my former classmates by settling down early and not really living the “college lifestyle.” I noticed a significant decrease in contact after my marriage from everyone. At the time, I didn’t understand, but looking back, it obvious to me that I didn’t have much in common with my friends who were all still single and dating. Andi sang at my wedding, but we only spoke on and off afterward for a few years. She married and had Jonah, who just turned 7. It took me longer to get pregnant, but in 2005, I had Jacob, who just turned 5. In my opinion, having children (plus the convenience of contact via email) bought us back together and we began to communicate much more frequently.
It was only 6 months after Jacob’s birth when I was diagnosed with cancer for the first time, and Andi (technically, Andrea, but I still couldn’t get it right) was one of the first people to offer help. At that time, Michael worked at Moffitt, which meant nothing to me then. She offered to house me and get me in touch with the cancer center, but I didn’t need Moffitt then because Miami was the place to be. It was for the best because Andi and Michael had their own trials with their second child, Maddie, who is just a few weeks younger than Jacob. Fortunately, Maddie is great today and for a little girl who couldn’t eat, she ate a ton last night! Then came an unexpected surprise – hi, Nathan – and the super convenience of Facebook. So it was easy to tell her when, I became pregnant with my second child, and if you’ve been following my currently situation, you really should know the rest. With this cancer, I needed Moffitt (even though Michael had moved on) and I noticed that Andrea at the end of messages again became Andi. I don’t even know if she realized it, but I did and told Joel almost immediately. It’s such a little thing, but for me, it’s nostalgic and makes me smile because I think it’s clear that I never really got that Andrea thing down. The whole time I’ve been here in Tampa, I know that I’ve exclusively used Andi and not once have I been corrected so perhaps the bond that began at 9 is finally rekindled. Regardless, it’s just good to have a good friend.
Today has been good. I got a lot of information, and I’m okay with it.
Mom and I are driving a rental car and Progressive has my car, which should be fixed within the next 3-5 days at no cost to us. Originally, it seemed that this was going to be an issue because Progressive (the insurance company of the guy who hit us) wanted to just cut us a check. No good because then we do not have a rental car; we’d have to find our own repair shop in an unfamiliar city, and the repairs could be more than what Progressive estimated. I figured we’d have trouble when we went this afternoon, but we had zero issues and everything went smoothly. I was shocked and pleased; I hate that kind of conflict and kept sternly rehearsing what to say in my mind. Then, when we went to leave, mom revealed that she called there this afternoon while I was telling Joel about this morning’s doctor’s appointment and already dealt with the situation; she just didn’t tell me. No point in the details, but mom was apparently persuasive.
Now, for the weekly Wed. doctor’s appointment… she confirmed what her nurse casually said to mom on the phone Monday; as long as I do not get sick, my doctor will release me after our Wed. appointment on March 17th. So it’s official, I’m coming home – and pretty soon! So much to do before I go. We have to pack up all the stuff we accumulated and I have to have my 90 bone marrow biopsy and pass a pulmonary test. I also have to get flu shot and something else I can’t remember. Why a shot? Well, with my new immune system comes the necessity of having to get all my vaccinations again. It’s like being a newborn. So when my kids are getting their shots, so will mommy. However, the bulk comes at my one year anniversary.
In fact, one year was the theme today. With leaving, we have numerous questions. Some major, some minor. We’re still coming up with things to ask, but the following is a list of the information we learned today.
1. My prognosis is good. I’m beyond the “danger zone”; so in other words, no one is concerned that I will die (I figure it’s just easier to be blunt and clear). Nonetheless, my first year is critical. This is when most of my GVH (graft versus host disease) flare ups can and will occur. I have to be very aware of my body and how I feel at all times. If I wake up and feel “off” or “icky,” I have to immediately call my local oncologist and get checked out. It’s the same if I have a pain, get a rash, develop a cough, or basically any change. I can no longer say, “oh, I’ll just wait and see if I feel better tomorrow.” I have to be on top of my health. Flare ups of GVH are expected and are not necessarily a big deal, but it needs to be treated immediately. Waiting is what can hurt me. So my prayer? That I will wake up every day feeling fine and ready to live another day.
2. I can drive when I get home. I haven’t driven since June, so I need to take it slow. The recommendation is to start in a large parking lot.
3. My doctor strongly recommends that I do not return to work for another year. Being a teacher is the main reason. Kids are germinators and she feels I should put off the exposure. I knew I really couldn’t return in August because I needed to recover for the first year after my BMT. However, my one year anniversary is in December so I wasn’t sure if I could or should return in January. My doctor doesn’t want me to and said she’d put that in writing. She also feels that my job would be too fatiguing and that more time is needed. I’m hoping my principal and colleagues will understand. I don’t want anyone to think I’m taking advantage, but returning in poor health or becoming unhealthy because I returned too soon, would not help anyone and only serve to hurt me. On the practical side, working will be problematic due to the following:
- I have to get my blood taken once a week, which fortunately will be done in my oncologist’s office. Moffitt will send him a packet of what to draw each week.
- I have to have a local oncologist’s appointment each month.
- I have to go back to Moffitt to see my doctor once a month in Tampa.
- I have to have more biopsies, but thankfully, they get further apart. After the 90 day one in just a couple of weeks, my next one is at 6 months, then one year, then two years, and then I’m not sure.
- I have to continue taking pretty much all of my medications.
Clearly, it would be hard to work through this; plus, I have to remember that I could have a flare up at any time and that includes first thing in the morning and I’d have to call out or even worse, it could happen while I’m teaching.
4. I’m leaving my Hickman chest line in because I’m still going to have weekly blood draws and I really don’t want to get poked every week with how bad I know my veins can be. My doctor told me many people get a port and remove the Hickman, but no way I want to do another surgery. She also said I can have the Hickman removed whenever I want. Joel’s disappointed. He understands the reason for leaving it in, but he thought I’d return home without it. It is a reminder of illness and I know seeing it can be upsetting, but this is just going to be a long process and the convenience of the device outweighs having it removed just because it would be nice to see it gone.
5. As for wearing my mask, I need to use my best judgment. I do not need to wear it all the time, but I should be precautions, especially around coughing. The doctor said I should always carry a mask around with me.
6. I should probably stay away from most fast food for a year unless I see or know it was made fresh. The key word is “fresh.” The doctor said that it’s food that sits around that causes problems because of food poisoning, but fresh, well-cooked food is safe. Also, apparently milkshakes are really bad. They carry some kind of bacteria or something that could cause my problems, so I have to stay away from those and things like soft serve ice cream machines. When the doctor first said, no fast food for a year; I joked about not being able to eat McDonald’s fries and she actually said that McDonald’s may be the one place I could go to because she believes they have to throw out food after 7 minutes; she going to check with the nutritionist. She again said that if I see them make the fries, it’s okay to eat them.
7. I’m starting Gleevac tonight. I may or may not stay on it but my doctor said that she wants to put me on it because I only had three rounds of chemo while the average is 4-6 rounds. It’s just to be safe and may not be necessary, so it may not be forever.
8. I’m not supposed to change baby diapers, but I can wear a mask and gloves if I really need to change one. We’ll have to see what I can do about taking care of Joshua.
9. I can and should get my tests done for my previous cancer. That means I’ll need to call my oral surgeon and schedule my annual PET and CT scans, and I’ll need to call my OB to get my mammogram prescription.
10. Lastly, my blood work continues to be good. My white counts are good. My hemoglobin is normal (12). My platelets are above 100 (105). My magnesium is 1.5 or above (1.7). I have some things that are a little higher or lower than normal, but nothing is majorly off.
As has become the normal and an amazing blessing, my doctor is very happy with my progress and says I’m doing really well. I may still have a long recovery coming, but the worst is really over so it will be okay. I’m excited to see what each future day will hold and I plan to enjoy every single one. I can’t wait to come home and see all the people I love.
My aunt Gloria, or Tia Gloria as I called her (Tia is aunt in Spanish), passed away Monday at her home. She was my mom’s older sister and only sibling living in the states. Mom is doing okay at the moment, but I know this is really hard on her; they were very close.
The two of them were so alike, yet so different. They were kind of the antithesis of each other; a yin and a yang, carefully placed on Earth by God to provide balance. They both have been loving moms who share similar family values and have raised multiple kids and spoiled numerous grandchildren. However, Mom has always been the careful one who worries about absolutely EVERYTHING and is easily embarrassed. Tia Gloria, on the other hand, loved to play pranks and was more of a risk taker.
(Left) Tia Gloria; (Right) Mom -- Cuba Circa 1950's
Not to mention she could cook some mean cuban food. Mom can cook, but even she had proclaimed Tia Gloria’s cooking superior to hers. “I don’t understand what she does to make the food taste so good” she’s said many times.
As kids, she would take me and my cousins to the park to play, followed by trips to Burger King. When I turned 15 and obtained my driving learner’s permit, she was the only other person, aside from my father, who let me drive their vehicle. I never once even asked. She simply would give me her keys and have me chauffeur her and mom around town.
One of my most endearing memories of Tia was the time she gave me a pair of nice jeans for my birthday. About a week later I wore them for the first time and felt something strange in one of the front pockets. I reached in and pulled out a small plastic toy lizard. I thought for a moment, reached into the other pocket and sure enough, pulled out a second plastic toy lizard. What in the world? I later asked my mom about it and she absolutely cracks up. Apparently, Tia Gloria thought it would be fun to see if she could startle me. What has always made me smile about this story is the fact that I was in my twenties when she did this. Age was not a limiting factor in her rulebook.
I regret not spending more time with her these past few years. Due to the rush of everyday life, our conversations were short and much too far and few between. I always sent her flowers and gave her a call on her birthday… something I completely missed this past year. …and it hurts.
Tia Gloria, thanks for being the best aunt ever and for watching over my mom all these years. You were like a second mother to me and I’m really going to miss you. Love you always.
Today started out pretty normal. We had to wake up early – around 5:30AM in order to be at Moffitt by 7AM. I checked in at the BMT office, got my ID bracelet, and talked to our neighbors while we waited. I had my blood drawn - the usual 5 tubes on Monday. Then, I needed to have my Hickman bandage changed, which always takes a while. Next, down to the 3rd floor for my chest x-ray. We finished everything at about 8:30AM. Then, off to walk around stores. I wanted to go to the bank to have some cash and Office Depot to get some mailing envelopes. Mom wanted to go to Target to look at a GPS that we saw on sale in the ad. All of this is perfectly normal and average THEN…
we’re driving around the Chase in order to find the ATM (which it didn’t have – what bank doesn’t have a walk-up or drive-thru?). We turned a corner and WHACK! I thought we ran over something large, but it was a guy backing out of a parking space who hit the back passenger side of my car, smashing the plastic off my passenger tail light and scratching/denting the side.
Hopefully you can see the broken plastic cover
Here, you can see the dent.
I couldn't take a pic without my shadow.
First and foremost, everyone is okay; no one is hurt, but it did freak me out. Mom took care of the guy, getting all his info. and I became phone woman. I called 911, but they won’t come to a parking lot accident unless someone is hurt. I called our insurance company and reported the incident. It doesn’t sound like much, but for me, that’s a big deal. I hate making those type of phone calls and often get super nervous, but I did it! I also ended up talking to his insurance company and tomorrow we’re going to a service center in order to get an estimate for the damage. We’ll see what happens, but we know we’re not paying because we were not a fault, which my insurance company clearly told me.
So after the accident, we ran our errands. Luckily the damage to the car does not effect driving it and thankfully he didn’t bust out the tail light – no cop pull-overs. It just looks ugly with the plastic broken off and the scratches.
After returning home, mom called BMT coordinator at Moffitt to find out about my future biopsy and pulmonary test. The coordinator was unavailable, but eventually called us back and here’s some BIG news: according to her, if all goes well, I’m going to be released March 17th! That’s a Wed. so we would probably come home that weekend because we would need to pack and wrap everything up and we really need Joel to drive here in the Murano because we don’t think we can fit all our stuff into my Altima. I’m still in shock and can’t believe that I could go home in just a couple of weeks.
Today has been bizarre, and I’m still trying to wrap my brain around it. We see Dr. F on Wed. so we plan to ask A LOT of questions. I’ll definitely update then and let you all know what’s going on. Keep posted and keep those prayers coming because God is listening.
Because of my profession and being mom, I think I sometimes hide my “quirky” side. Maybe some would call me odd or weird or eccentric or eclectic or just annoying. Co-workers who have visited my classroom know I love to decorate with apples and smiley faces. Perhaps annoying because it’s bright and happy, but I find it fun and inviting. At the same time, that “Sound of Music” – type side is coupled with a side that I hint at, but often hide from the general public. It’s the dark side where I enjoy horror films, love vampires, go to Hot Topic and Spencers to buy merchandise, and sit at home in my capri pants and an “I heart My Geek” baby T with my Nightmare Before Christmas blanket wrapped around me while I read books like Pride and Prejudice and Zombies. I suppose I just enjoy many things and they happen to be at opposite ends of the spectrum. At school, people kinda see it when I decorate my classroom for Halloween. I put up signs and lights including my favorite: the dead tree, which is the size of a medium Christmas tree. It’s black, looks wilted, and covered in orange lights. It is light, happy horror which I do continue in my personal life. Here’s a couple examples:
Awesome PJs courtesy of my honey
Alice in Wonderland purse and Nightmare Before Christmas wallet courtesy of Spencers
I love the skull PJs. I’ve also seen skulls with little bows on their heads, which I think is too cute – others would think I’m wacky since I’m a 33 year old mom and teacher. My mom bought me the purse and I bought the wallet here in Tampa. My mom is worse than I am; she’s fascinated by the oddest things and finds things others would think are “sick” funny so I guess I was influenced by her. Joel is often shocked by her, but I think he’s gotten used to it and tries to get to her first. It’s cute. I hate myself for finding my mom embarrassing at times because what I’ve discovered while shopping with mom in Tampa is that we’re really similar in what we like and find funny. She also likes horror movies so I have someone to watch movies with because Joel hates horror movies. Then, there’s vampires. We’ve continuously watched the new series The Vampire Diaries on TV and mom is currently reading the Twilight series while I’m reading my zombie book. If my concentration continues to improve, I’ll probably read that series too. I know if I was a teenager; I would be a die hard Twilight fan.
You know, the more I think about it. This is a weird post and maybe I’m not that quirky. I guess I just like a variety of things.
A simple hat...
...that's reversible and covered in skulls, that's me.
PS: Scarf courtesy of Mami (Joel's mom). Isn't it cute?
I got each of these hats at Icing for $2 each! $6 for 3 hats! I love clearance and bargains. Another mom and me thing that I think drives Joel crazy. “But honey, it only cost two dollars!” Tee-hee.
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.
My routine is off, but it’s not necessarily a bad thing. First of all, I woke up Friday sick. Headache, stomachache – overall not feeling good. Mom had me take a nausea pill, but I still threw up. It was pretty much nothing because I hadn’t eaten yet. So I didn’t eat. I went to Moffitt for my scheduled lab work and we told them what was going on. While in the waiting room, I kept nodding off and finally we saw a PA. Although a flare up of GVH was a possibility, we all felt that it was the increase of 4 additional pills of magnesium that Dr. F increased in my meds on Wed. In the end, my mag was decreased back to 12 pills versus the new 16 and my pregnastone (steriod) was increased a little just in case. I was also told to consistently take the nausea pill on Friday so that I could eat and take my pills. On Sat. and Sun., I was told to take it before meals. Then, I was to see a PA again on Monday to check on my progress By Friday afternoon, I was feeling better and I did well over the weekend.
So today’s Monday. I had labs, my bandage changed, a chest x-ray, and then we had to sit around and wait for the PA visit. The visit went fine. My labs were good so no changes were made. He decided to cancel my routine Wed. appointment since he saw me today and Dr. F is in Orlando at a conference this week anyway. I’m to call with any issues. Tomorrow, I have no appointments! Wed. I only have labs now. Thursday I have no appointments! Friday I have morning labs and afternoon PT, which isn’t the greatest but it’s how it worked out.
Speaking of PT, last Thursday PT re-evaluated me and luckily were able to justify continuing with my sessions because my hip flexers are still weak. Basically, I have bending issues. I can’t get up if I squat down too far, and to get off the floor, I have to get on all fours and kinda climb up a wall. I’m still able to have PT 2x a week, but they could only get me in once this week. Next week is weird too, but I do have two PT visits.
So basically, today was my Wed. appointment early. I did get a phone call from the pharmacist to lower my tetralimus (GVH prevention pill) pills from 9 to 5; we can only guess that it’s due to my blood work. Overall, I’m doing well again. I trying to read a book, so far I got through one chapter and fell asleep, waking up a 2AM with the lights on! I’m doing something ambitious and I’m going to make these detailed signs for each of the boys’ rooms.
Thanks to everyone who continues to read this blog. I love the comments and reaching out to others in the world outside my Tampa apartment.
For a while now I’ve wanted to post pictures of my headgear, but I didn’t have a camera. I didn’t ask for one but Joel brought me our old one when he visited, helped me take pictures, and showed me how to upload them. I can now say that I’m not smooth-bald anymore. In the last few days, I’ve been sprouting; however, it will be quite a while before my hair will really be back. So let the fashion show begin…
CAPS:
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| I wear this cap ALL the time. It’s pretty and comfort because it stretches, but also practical. With no hair, my head is smaller so all my hats end up covering my eyes so I wear the cap under the hat. I’ve received lots of compliments on this one. (gift from the Spanish River English dept.) | This cap is great for around the apartment. (gift from the English dept.) |
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| This a sleep cap that bought early on in my treatments because sometimes my head gets really cold at night. Who knew hair was so useful? | |
HATS:
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| This is my favorite hat. It’s called a newsboy hat, and I think I’ll still wear it when I grow my hair back. (bought with a giftcard from the English dept.) | This hat is reversible and can be tan. I call it my fishermen hat. Can you see my cap underneath? (the other hat I bought with the English dept’s GC) |
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| The English dept. sent me this one too! | I bought this skull cap/hat at www.choosehope.com; they sell cancer inspired merchandise. |
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| I took this picture because I think this hat compliments my duck bill. It really makes me look like a duck. | Gotta love this hat! Katherine, a nurse on the BMT floor in the hospital, made this for me before I was released. It’s very warm and with the weather here, it’s come in handy. |
HEAD WRAPS: (These were what I primarily wore before coming to Tampa, so I’m just going to post a couple.)
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| This unique headwrap is embellished with fringe. (gift from Gracie) |
Thank you for all the gifts! I think I actually look pretty good in them.