Another Round of Oncology Visits

I had an appointment with my oncologist this afternoon.  The appointment itself was rather uneventful which was nice but a few things were discussed that concern my doctor.  

I've always struggled with overwhelming fatigue with this rare illness but the past few weeks have been significantly worse and consistently worse.  I've also had some of my usual symptoms come and go during this period.  The fatigue has been the most noteworthy though and seemed to concern my oncologist more than anything else today.

I would get up in the morning and head to the bathroom, as usual.  By the time I would leave the bathroom after washing and brushing my teeth, I needed to lay down again.  I would nap but when I would awaken a few hours later, I still felt like I hadn't slept at all.  The few hours a day that I would manage to be on my feet were spent bouncing from one thing to another, unable to stay focused on any one thing.  So, not only have I been struggling with overwhelming fatigue but this fatigue seemed to be introducing more cognitive issues.

My oncologist wants me to head back up to the hospital on Thursday for more tests to see if my condition has worsened.  If it has worsened, then she wants to know if my condition has fallen to a new low putting me into a completely different category of this rare illness.  If there is a noticeable difference in these test results compared to recent years, then it will be time for another bone marrow biopsy.  

We discussed what a worsened category of this illness means as far as treatment.  She pointed out that I am maxed out in my current treatment (which I knew already).  There really is nothing more that can be done with treatment in the category/stage of this illness that I have been in for years.  The key has been to effectively and fluidly manage this maxed out treatment.  If, however, my condition has worsened in laboratory results (not just clinically as has been noted in my appointment today), I might be a candidate for one of two new FDA-approved drugs.  That being said, she did forewarn me that the side effects of these drugs "is not so good".  

At the time, I didn't think to ask if these two drugs are supposed to put my illness into remission after a relatively short course of the new drug or if it is simply an on-going treatment plan.  I'm thinking (based on my knowledge of other drugs that had been in clinical trials in years past) that the hope is that a full course (ie, months) of one of these drugs would put my illness into a sort of remission or, at the very least, lighten the severity of my symptoms for a while.  Also to consider is that the new drug treatment may not work or may make things worse.  

For now, I do another hospital visit on Thursday so they can run some tests on my organs and blood.  If anything is noticeably worse than last year, then we'll also schedule another bone marrow biopsy to check for a few known markers in the marrow where cells are created.  

In hindsight, it is obvious to me that my oncologist was concerned enough about my current condition that she reminded me that I should be calling her whenever I have a big change in my overall condition or a debilitating symptom that lingers longer than usual.  Additionally, she reminded me that she should be consulted whenever any other medical procedure needs to be done so she can prescribe pre-medication and treatment through the medical procedure and beyond.

Another concern, I suppose, is I don't know how Sheila is going to manage this with her job.  She is already taking time off a few times a week for her own treatment for her back injury (which is still slowly improving).  Plus, she's been spending more and more time at her parents house caring for her mom (late stage Alzheimer's).  Cutting out more time from work to deal with my health is going to put a serious strain on her job.  

We'll see how everything goes on Thursday...  I guess I should just focus on one step at a time...