Prayer Request

(Sorry meant to post this days ago.)

I drove to Tampa on Friday for my month appointment with my doctor at Moffitt. Thankfully, no procedures this month, just July labs and results from last month. Things went well. My 6 month biopsy from June had excellent results. There are three major percentages for the “post transplant engraftment analysis.” For the marrow, the donor is 100% and I am 0%. This is the same as last time and what I want. Donor is the goal as I am the one who has for lack of a better phrase the “bad blood.” For the neutrophils (the most abundant type of white blood cells), the donor is 100%; me = 0%. Again, exactly what I want. For the last one called lymphocytes (white blood cells – the ones really tied to defense in the immune system), the donor is 96% with 4% still me. This is 1% higher than the last biopsy, which was 95%. Even though it’s not 100%, my doctor says that it basically is because anything from 95 up is considered 100%. I had to look up neutrophils and lymphocytes so hopefully I have the description right. In a separate bone marrow report, I really do not understand everything written in it, especially a lot of numbers and percentages. I did catch some words that appeared good such as going from “mild” to “moderate” and from “slightly hypocellular” to “normocellular”; however, there are numbers that went lower than the last report and some that went higher. There are some major differences in places like going from 24% or 43%. That seems like a big difference to me, so I’m going to ask my oncologist next time we get to speak what it means. The fact that my BMT doctor didn’t point these percentages out or even mention the differences tells me that it’s probably nothing to worry about, but I’d still like to know what it means. After all, who knows what a normoblast or megakaryocytes is exactly? Another good note would be that the counts from my labs looked good with the big three (white blood cells, hemoglobin, and platelet) being higher than the last time – higher in a good way. As for changes, my BMT doctor decided to take me off of the predisone (the steroid), which totally amazed me. I still take some steroid, though; it’s in my nasty, oily liquid that she said would probably be the last thing she’ll take me off of. Nonetheless, my hope is that the decrease will allow me to perhaps lose some of my excess weight. It will still take a while, but may be I’ll retain less water. My doctor also said that she changed her mind about me and said that she could see me every 4-6 weeks, instead of every month (4 weeks); consequently, my next appointment is 5 weeks away on August 27th. Our visit was relatively brief, which is good but sucks considering the length of the drive to get to Tampa.

To add to my trip, after my appointments, I had dinner at the Peacocks with my friend, Andi, her 3 children, and her parents. It was a really nice evening. Seeing Andi is always a treat. Seeing her parents is always interesting and nostalgic because they truly were my second family when I was in middle and high school. Then, seeing her kids just makes me smile. They are adorable and have tons of energy. I brought them small gifts, mostly crafty stuff. We had super yummy lasagna; I think it was Andi’s sauce. Much better than mine. I brought cheesecake (variety) and a chocolate fudge cake for dessert. It seemed to go over well, and Maddie actually ate an entire piece of cheesecake – a feat considered how little she is. Hopefully, it will help her gain some weight. I think my presence messed up the kids’ sleeping patterns but hopefully they fell asleep once I left.

That night, I made it back to the hotel safely and the next day I drove back to WP safely. In the end, all went well. Thank you for your prayers. The results were wonderful.

I’m going to try to keep this short, but I just got off the phone with my mom. After talking about the boys and my Girls Weekend, mom had some bad news to share. Yet another patient from my time in Tampa has passed. Much like Tyler (the 22 year-old), this is one that was close to us. Alan, the patient’s husband, was someone my mom met early on in my stay at the Moffitt Hospital and he’s someone she talked to often. We saw Alan and his wife in April, the last time mom drove me to Moffitt, and mom remembered this time to get Alan’s contact information. She came across his number the other day and gave him a call to see how they were doing. When we met Alan, it wasn’t their first time at the hospital. His wife had her transplant in October and was back in the hospital because she caught pneumonia. She seemed to have a much harder time than I did, not to lessen my painful experience in any way, but I know that she dealt with more issues. She had side effects that the doctors couldn’t figure out right away and if you remember the burning I had on my hands, she got it worse with additional burning on her feet and wasn’t able to walk. When we saw them in April, they were still living in the apartments. So depressing because she had her transplant before me yet I got to go home before her. I mean I thought 4 months was long… The point: Alan lost his wife even after all of this. He told mom that they had a nice Mother’s Day but then his wife felt ill that night. The next day he had to take her back to the hospital part of Moffitt (they still hadn’t left Tampa) and she passed that same day. The doctors said that she probably caught a virus that went straight to her heart.

Oh my. It almost makes me speechless, but then I’m reminded of how blessed I am to be here, to be alive. Alan’s wife raises the number of deaths to eight, I believe. There were only 12-15 people in and out of my floor while I was there so this number is extremely humbling. I can’t completely express in words what I went through; however, the fact that I could so easily be one of those 8 is frightening. My attitude has been different since Tampa. Every time I feel stressed or upset, I tell myself to let it go. I am just so grateful and thankful for my life and my boys. Thank you to everyone who has prayed (and continues to pray) for my recovery. I believe I’m still here for a reason and those prayers have been invaluable.

I had an appointment at my oncologist’s, PT, and a cancer support meeting. My counts looked decent. They continue to stay about the same – steady. I was glad to see that my platelets were above 100. PT went well, but as usual is exhausting. Let’s see… I made a quick trip to Michael’s. I managed to fold and put away laundry. I also made dinner. Then, I went to my cancer support meeting, which is the 1st Tuesday of every month. I enjoy going to the meetings. Everyone is really nice and positive. It’s uplifting to know that you’re not alone and nice to know that other people have shared similar experiences. People there really listen and allow you to express how you feel without judgment. I met someone who had a BMT; we talked after. He got his own cells and got to go home in days, but he did have to stay home. He didn’t have to leave home like me, but we discussed side effects and had several of the same ones. Different cancers. His was multiple melanoma, I think.

Currently, I’m waiting for my bone marrow biopsy results. I believe they will be good and I really do not feel any doubt regarding it. I think it’s the first time. I really do feel at peace.

Thank you for all your continued prayers. On Friday, I’m driving to Orlando to meet up with Andi and have a Girls Weekend. I’m super excited. I’ve never done anything like this before. I do feel a little guilty, but I keep telling myself that I’ve definitely earned a vacation. I rarely drive long distances, so I ask that you pray for me – that I will be safe.

So we’re back from Tampa, and I’m doing pretty well. Yesterday was a marathon at Moffitt. It started at 7:30AM so we drove up Thursday evening. I had my 6 month bone marrow biopsy. I won’t have results for probably 2 weeks, but I expect them to be good. My pain is much better than I expected. I’m most stiff and sore rather than in pain. Oddly, the most painful thing was all the baby shots. I had to get 5 and 3 of them really burned. Yesterday and today I find that it’s difficult to raise my arms above the shoulder. I know that my situation and body is different that a baby’s, but I have even more compassion for the poor little boys when that get their shots. I also saw my doctors (nothing major there because I’ve been doing fine), and I had to get a pulmonary test, which seemed to go well. We actually got ahead of schedule, so we got to leave a little earlier. After eating a late lunch, we headed home. I slept most of way, lying down in the backseat for half the trip. We left the boys for the night; I wasn’t in any position to take care of them and I guess Joel called his sister while I slept. Joshua was with abuela and Jake was with his tia – but especially with Sophia. He was super-excited when I dropped him off on Thursday. Joel picked them up this morning. I’m taking it easy. Picking up Josh is not a good idea and definitely hurts. Joel’s helping there. I took a nap this morning, so I feel pretty decent. Jake missed me and Joel said he asked if I was home. I feel bad that he thinks I might disappear again; at the same time, I really glad that that should not happen. This morning I was lying down on the couch and Jake grabbed my hand to hold – completely sweet. It’s nice to feel wanted. In fact, I should make Josh a bottle and have Joel give him to me to feed. If I think of more to say, I will make an addition. In the meantime, a big thank you to those who prayed for us on a trip. I greatly appreciate it.

I realize I haven’t posted for quite a while, but I haven’t really had much to report.

I’ve been trying to find some kind of routine, which has been difficult because appointments never seem to be consistent. So there’s been physical therapy for both me and Josh; Jake gets his speech therapy; Josh also has occupational therapy. It’s actually quite a bit to coordinate. I feel bad that I have to constantly give Mami different schedules every week regarding Josh. It’s a shame that it’s not always the same, but what can I do?

I had an appointment at my oncologist’s office today. My blood work looked good today. I went up a little in all three of my major categories. White blood cells are in the 5′s instead of the 4′s. My platelets are over 100, and I saw a slight increase in my hemoglobin. I also got to see my doctor, and things went well. I’m doing good. Have to work on building my stamina while not overdoing it. He seemed pleased with my status.

I have my 6 month biopsy at Moffitt next Friday. I believe the results will be good, but I’m not looking forward to the procedure. Joel and I are going to go up early Thursday evening; then, Friday is a marathon. We have to be there at 7:30AM. My biopsy is at 8:30AM. At 11:30AM, I’m due at the BMT. I get labs, a bandage change, and SIX injections (so NOT looking forward to that). Then, it’s time to see the PA and my BMT doctor. But we’re still not done. My last appointment is at 2PM for a pulmonary function test. Hopefully, I’ll still have enough energy left to do well. I am going to be so sore and so tired. Joel doesn’t want to stay another night, so the plan is to return after I finish the last appointment. I’m pretty positive that I’m going to be cranky. Hopefully, I won’t be in too much pain on the ride back. I told Joel that I would try to trip back after the marathon as long as I wasn’t expected to do anything once we got back to WPB. He said okay, so we’ll see how it goes. That will most likely be my next post. Thanks for reading and keep me in your thoughts.

Well, I knew the day would come, and even though it’s been almost a year since she arrived in Florida to be my caretaker, my mom went home to Georgia Wed. night. When I came out of my bedroom Thursday morning, I found Jacob (who has made a habit out of joining mom on the couch at about 4AM every morning) sitting on the couch; then, he looked at me and said, “I can’t find Grandma.” It was just pathetic. I told him that she went home and then distracted him before he started crying.

It’s definitely more challenging around the house and with Joshua now that she’s gone. For instance, I woke up Friday with a throbbing headache behind my left eye. God must have taken pity on me that day because Josh slept in which gave me just enough time to take a pain killer and lie down. I remained achy, but when I went to get him, the throbbing was gone. Amen. I’m also more tired because I don’t get any relief during the day if I have the kids since Joel is at work. Luckily, it’s  not going to be like that every day. Abuela will still help me  out by watching Josh on some days, so I can go to my appointments and continue to recover. Jacob wants attention, but he’s completely capable of entertaining himself if necessary. I find time with him to be less strenuous.

I did some more rearranging. There’s a lot more space in Josh’s room because mom kept a lot of her things in his closet. We have more floor space as well. I took ownership back of the laundry room – the one task my mom never really handed over before her departure.

It’s a lot more quiet. At times, it’s nice, and at others, it’s a bit lonesome. She was with me so long that it’s weird to be “alone.” It’s the one thing I was denied for such a long time. Moffitt literally told her that she had to be “attached to my hip” to insure I was okay.

I think she misses seeing me too. She’s called me every day since she left and we never used to do that. I know that the frequency will go down with time, but I don’t mind for now. Apparently, she’s got plenty to keep her busy. When she got home, she discovered that her toilets exploded – or more precisely, it looks like a pipe broke and water leaked everywhere. She’s got mildew and no water. Thankfully, yesterday she told me that she was able to get hot water to run to the lower trailer where Reggie used to live, so she would finally be able to take a shower. It’ll be a couple of weeks before her house if livable. I feel guilty, but as mom always says, “It’s par for the course.” She also said that “it could be worse.” Pray that all works out for her in the end.