Bone marrow injections 💉
Yesterday we started the special injections needed to stimulate the growth of new stem cells in my bone marrow, so that when we actually start the transplant/collection process on Monday it will be easier to collect.
Asides from the obvious pain of being injecting by a needle, the burning sensation of a foreign liquid going into your body, and the look on your husband’s face while having to do this to you… It’s the pain it causes AFTER I wasn’t quite prepared for. I suppose I should have, given the fact that all of these new stem cells need room to take shape in your bones, but I wasn’t quite expecting a literal feeling of my bones being ripped apart. Well there you have it, I’ve learned something new.
Be prepared for your bones to feel as though they’re being ripped apart, your knees to feel as though they’re being hit with hockey sticks, your chest to feel like it’s being split in two, your rib cage to feel like it’s being pulled on either side, and your lower spine has become someone’s instrument in a very aggressive band. Yes, this is what my body has become, a painful symphony of well, PAIN. My pain level is already incredibly high, and this new development of bone pain and side effects has put my body into almost a shock like state, a trauma if you will. I didn’t mention the skull bashing headache, the intensity of nausea, and many other lovely symptoms, I think the bone pain is the main event worth noting.
We arrived home yesterday after having gone through the day of testing and first injections and appointments, I was exhausted. I slept immediately as I got home, and everytime I would wake up, I couldn’t stand the thought of being conscious for this magnitude of pain… So I would drift off into another sleep, this continued the entire night, or until I lost track of time.
Today was a new day, a new injection, no change as far as pain or fatigue. If anything .. it may have been worse if that’s even possible. They say to rate your pain on a scale from 1-10, I’m no longer sure if I can do that. My pain level has been at a ’10’ so often, it no longer seems adequate. I couldn’t keep my eyes open for long enough to care, and since I normally am plagued with the inability to sleep at night as part of my disease – I welcomed the change. What I didn’t realize is that this exhaustion was more than exhaustion, it was my cortisol once again depleting from the amount of pain I was in, and this inability to stay awake was a sign I was much too low, and needing steroids. All I cared about was not feeling pain.. So I ignored the fact that I should be watching out for this, I just wanted to not feel anything. It was when Serge finally woke me up and demanded I take steroids, I knew he meant business. What I didn’t realize is that I had been unresponsive for quite some time. Oh, what fun he must have had, wondering if I’m just tired or unconscious. I feel bad for him quite often, I must get him a present – like a whole year worth of steak.. Or perhaps the greatest gift of all would be to just see me without pain for a little while, yes I think that would do 💗
Tomorrow will be day 3 of the injections, and hopefully the last day needed. We may need more depending on collections, but so far as planned, it’s the last day for injection times… I’m not quite sure how long these side effects will go on for, a few days, everyone is different.
Tomorrow (Sunday) we will do our last injections here at home, and then leave for our hotel. Monday early morning we are scheduled to do blood, and then….. THE MOST DREADFUL PART – I have to have a line inserted into my neck 😫 My veins aren’t very good, so I will have to go to radiology, and have a procedure done where they will literally put in a big fat tube into my artery in my neck – while I’m awake. I’ve only ever had this done while out, during prep for surgery, and taken out awake… And let me just tell you, having it taken out, was one of my worst memories. LIKE THIS IS JUST MY WORST FEAR … So Monday is basically my nemesis. 😰 They will keep this in for the few days of collections, and then take it out once they’ve gotten enough stem cells. (UGH) So after I have that installed, I will go and get comfortable in the lovely machine, where I will spend approximately 6 hours a day .. and see at the end of the day if they’ve gotten enough etc! Can I just say.. It’s a good thing I absolutely love my hospital?! I spend half my life there and they treat us like.. family. Everything about this is awful, but atleast I have the comfort in knowing I’m in good hands 💗
Thats my update for now, pain 😂😁
The good news is… Our hotel is fab, I couldn’t possibly recuperate without a fabulous place to lay my poor body!
(I knew I would sneak fab into there somewhere)
Pheo VS Fabulous