Thursday, September 10, 2015

Week 57

The insomnia is bad with this round.  Over two months since my last treatment, number seven was at the end of June, and I am still dealing with three a.m. eyelids open.  Even my pets seem confused, dog is quite perturbed that we have left warm comfy bed to sit on the couch, and cat is like Wheeee! Buddies!! 

I knew to expect a variety of possible reactions from the list provided by my oncologist when considering this clinical trial for treatment of melanoma, but I did not anticipate such a long roller coaster of physical and mental exertion in such unpredictable ways.  
For me, every ipi treatment has caused one or more side-effect to become exaggerated: for a while it was debilitating tummy trouble, another was rashy skin, this round is clearly leaning toward the depressy never let me sleep mental side of it.  I wonder what the next treatment will deliver? 

Cancer treatment brings a wide variety of medical onslaught to a patient, some are terribly painful, some involve inexplicable physical changes, all are different and uncomfortable - and the details vary from one person to the next.  The one thing each treatment has in common is that we have to brace ourselves to face it. 

Every recipient of a possible cure (or delay) for this disease is aware they are facing it, and they have to mentally and physically choose to go through the process.  Whether treatments are daily, or months apart, there is that waiting period, that knowledge that there will be more.  More needles, more chair, more nurses, more help, more fight.  

Yesterday I had another visit with my lovely and ever-vigilant family physician, to check in on the changes in medications we decided upon in July.  There isn't a whole lot we can do prescription-wise at this point, as I am still bound to the stipulations of the clinical trial, but we try.  We discussed the list of ideas I was tasked with trying since we last spoke, and I was pleasantly surprised at the number of things I have actually accomplished in the last couple of months.  

Without being at work, and with the rest of my carpet being generally ripped out from under me in the last year and a half, I struggle to find a sense of purpose.  

Loss of sense of purpose goes with loss of career, true story.  Of course family is purpose number one, and the fight against melanoma takes up the rest of my time, but as I work to try to figure out my "new normal" I am still surprised by how simple some of the "meantime accomplishments" are.  It's not working through a lineup of cranky customers upset about their bank fees, or passing a surprise inspection by the OLG bosses, but it is the fulfillment of tasks at my hand at the moment.  One thing per day. It does add up.  

I am almost finished reading the interesting book my doc recommended, I have actively planted myself back on the therapist's couch (and I am doing the emotional work she is recommending), I helped our girls paint and re-decorate all three of their bedrooms as part of back to school prep, and I joined that new-to-me cancer support group. Not bad for a months' work.  Somehow still falls short of my usual expectations, but whatever, that's the part I am working through.

We also discussed my repeated suggestion to ditch this clinical trial and move on with my life.  Treatment number eight (the last one) is in three weeks.  Yikes, where did that year go?  It is optional for me to NOT take each treatment, but as my physician gently reminded me, what other option do I have at this time?  Nothing.  Watch and wait (Oncological term for "do nothing until it gets worse").  Why start that now when I have the opportunity to delay that by at least another three months.  

There are other treatments for metastatic melanoma, and new ones in the works, but they are not available to me until it spreads to another area or comes back in the leg/lymph nodes.  It is not a matter of IF it returns, it is a matter of WHEN it returns.  The pacmen are at this time holding it off, as evidenced by my good CT scan reports, but after that who knows?

My doctor said "they" set up this clinical trial in this way for a reason, and it will prove to be a pivotal trial in the fight against melanoma, so she encouraged me to stick with it, reminded me that we will tackle the rest as it happens.  The more tools I have in hand to fight this beast, the better.  Unfortunate that the side-effects of the treatment don't allow the normal life we are fighting to keep, but some is better than none I suppose.  

It is difficult to look forward to something when you know it's going to make you feel like shit.  It is a fact that I will still feel like this - or possibly have some other or new physical anomaly - three months from now, because I will have had a fresh ipilimumab treatment.   

Week 68 in November will mark the end of my participation in this clinical trial, and it may give way to the beginning of feeling less at the mercy of immunotherapy.  Super!  But then what?  Recovery... recuperation... wait. "Watch and wait."

Family doc suggested that I have a party after this treatment, but I don't feel like I have anything to celebrate.  This treatment will be over, but then..?  She said that it is a celebration in itself that I will have made it through a complete round of chemical therapy.  Early on I had thought of throwing a pacman-themed party at the end of this, but as I approach that I consider more of taking myself on a quiet vacation - oohh yeah throwing myself a sleep party!  A sleep retreat, now we're talking.  

I know you can't tell by the goofy hours that show on this blog format, but it is now four. a.m.  I have had an hour to digest my thyroid meds, so now I can go have my coffee... thank you.  Have a great day.. my job for today is to book physio for Cassie for her ankle.  And likely have a nap.


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