This morning, I may just have been attention seeking, for it would appear that I am finding my clinic appointments easier to manage. At least today’s was. I anticipate that these specific appointments will get easier as I learn more about My Myeloma and as I continue to ask the difficult questions in the three week gap between appointments. Space out the bad news, that’s what I say. I suppose today was also easier because I had imagined the worst case scenario. The worst case scenario did not happen, for that, I just have to wait.
So, what did today bring? What was I able to take away from my 20 minute appointment? Well, I have somewhat helpfully bullet pointed the headlines below:
* I will remain on the PADIMAC trial for at least one more cycle, providing there is not a complete disaster with my paraprotein level. Please don’t let there be a complete disaster with my protein level.
* The Velcade dose is being reduced by 20%, because I am starting to show signs of neuropathy. It turns out that some of this is irreversible. I did not know this. Please don’t let me have pins and needles for the rest of my long life.
* I will not get my paraprotein level on Friday as original anticipated. I will now have to wait until Monday for this pleasure. Please go down paraprotein. I. Beg. You.
* Whilst my paraprotein remains and I still have myeloma in my body, I live with the risk of my lesions getting worse. I asked this specific question. Of course I did. I always like to hear the negative answers. As my pain, bar the hip, is in the same areas in which I have always in My Myeloma Life had pain, all should be well. I am on drugs to prevent further deterioration, so fingers crossed this will work. I should also not worry that the bone clicks. I am not a hypochondriac now, so, there will be absolutely no paranoia about these clicks whatsoever. It is my responsibility to tell the Medically Trained People about changes with my pain. I do not think that me not telling them will be an issue.Please don’t let there be any further deterioration of my bones. I like them.
* The increased pain in my left ribcage was discussed. Apparently, I already have “a few fractured ribs”… I didn’t know this, but I didn’t think it was the time to point that out. Plus, it is what it is, there is nothing I can do about it, these weaknesses take time to heal. Please heal quickly, really.
* The reduction to my C7 vertebrae means that the bone size has reduced. Again, I don’t really know what this means, but I do not think this is a good thing. Please don’t let it reduce any further, I do not want to be paralysed.
* My ability to urinate into a small pot has dramatically improved. Minimal leakage on the hand. Please don’t let me have a bladder infection; I don’t want it.
* There is a third stem cell transplant option, which is a combination of my own stem cell (when the myeloma is gone) and Big Sister’s. I know nothing about this procedure other than the risk of mortality is far less than if I went ahead with the donor stem cell transplant. Please let this procedure give me a nice, long remission. I don’t want to die prematurely.
And so, that was my morning. It turns out that despite this being my week off of treatment, I can still get tired. I did not anticipate this. I could tell you about how many hours I slept this afternoon, but I think a picture can speak a thousand words, so you have two in which you can see for yourself the deterioration of my energy levels as the day has progressed. To be viewed against my super hot photos from this morning. Modest.
And with that, to sleep. I have work in the morning, with meetings. Plural.
Emma Jane Bones née Jones x