I’m released to go home, but I’m not quite done yet. Turns out I have to have another test tomorrow, but it shouldn’t be too bad. I have to get a bone density test because some of the drugs I’m on, especially the steroid, can cause bone loss. The doctor told me that it’s a scan and I would be injected with something. Let’s pray that my bones are good; otherwise, I’ll have to take yet another drug to counteract the side effects of the other medication. I also have to start taking a calcium/vitamin D supplement 3x a day after my test to help fortify my bones. Otherwise, the visit was pretty normal. My blood work is good. My pulmonary test results looked good. The results of yesterday’s bone marrow won’t be back for a while and we were told to call in two weeks.
So what happens once I’m home? Let’s see. I have to go to my oncologist office once a week for blood work and general checkup. I have to keep up the maintenance of my hickman, so we’ll be doing flushes at home with the materials we need being delivered (I no longer have home infusions to worry about). I have to come back to Moffitt once a month to see my doctor and, of course, have more blood work. Right now that’s scheduled for April 23rd. I have my 6 month biopsy in June and that’s when I also have my next round of shots. I also have appointments or have to make appointments to see my OB, dentist, oral surgeon and have tests to get like my mammogram and PET/CT for my previous cancer. Then, as long as we can get insurance approval – we’re waiting to hear – my doctor wrote me a prescription to continue my physical therapy. My doctor believes it’s important because she says I can have problems specifically with my thighs that tend to occur later. Then, I’m still on all my drugs. One of these days, I’m going to count how many, but I’ve avoided it so far because I think it would just be depressing to know and realize. I mean after all I know I take 12 magnesium pills, 5 tac, 2 of this, 2 of that, 2 of the other… and more… and more… and more.
Yes, I’m coming home, but I’m not even close to done. This is a LONG process. I am so much better, but I’m not 100% and it will be months or possibly years before I am. I think that’s hard for most to understand. We all want it be that “Jamie’s finally coming home; now it’s all over.” However, that’s not reality. Reality is that I’m coming home and that’s one in a series of positive steps forward. So, I need to continue to ask those of you who have been following my journey to continue to do so.
Continue to pray for me and my family… because for me, this will never quite be over. My doctor’s made it clear that I’ll need to be watched my entire life but I will eventually reach a point where I won’t have to give blood every week; I won’t have to have a hickman; I won’t have to take so many pills; I won’t have to get so many tests. It’s a future I look forward to, but for now, I’m happy to finally come home. Four months is a long time!
Again, thanks to everyone and a special thanks to those who have, are, and continue to wear our orange bracelets.
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I am so happy you get to be in the same place as your children. I know it will be difficult for them, but they will love the fact that Mommy is home…maybe more that I do!
We know the reality and WILL be here every step of the way. This is a big one….one of many…..but worth celebrating!
I am thankful for each step of your journey. I am still here – many are, and you will continue to receive support.
Thanks, Marcy. I know that there are people who care. It’s just sad that I haven’t heard from some in quite a long time.
Jamie:
I feel compelled to write to you, although you don’t know me. I am the primary caregiver to my sister-in-law Tamara, a Tampa High School Social Studies teacher diagnosed with AML last August. Tamara is now in Moffitt on 4 West, having just received her stem cells yesterday. Once we knew Tam was to undergo a transplant, I began to research the process and happened to stumble upon your blog. While it might leave you with a wierd feeling knowing a stranger has been ‘following’ you – I have to tell you how much encouragement and hope we’ve derived from your experience. As we discussed what was to come and made our plans for each stage in the process, my family continued to smile indulgently when I quoted what “my friend Jamie” had to say about each topic. Good luck as you enter this next phase…. I’ll be pulling for you!
I’m so glad I could help. Please contact me with any questions. I’m more than willing to aid you both in any way I can. My mom is also available if you want to talk or vent caretaker to caretaker.