Week 60 - pacman treatment #8 of 8

Well. That's done! Another item off my bucket list, check!  I am safely tucked into my hotel room all quiet and dark with my blankie and cuppa tea, my bloodstream coursing with a fresh $30 000 worth of immunotherapy drug.  I made it.  My last treatment of ipilimumab in this 68-week clinical trial.  Four treatments three weeks apart, and then four treatments three months apart; week 1 was in August 2014. 

I hesitate to congratulate myself, or even to be graceful about accepting the congrats of others, especially today.  

It is with mixed emotion that I put one foot in front of the other and made it through the day.  Over the course of the last 60 weeks I "almost bailed" on this treatment several times (4 372 times to be exact), even up until yesterday when I had to wrench myself into the drivers seat of my car and force myself to go through with this.

It may be difficult for some to understand why I would say this, and if you are new to my blog I can point you to some past articles which may help explain my point of view on the matter.  (The Pacman Effect, Chemo Brain, Back into the waiting pool, Alternative Treatments, Re-Calculating...)

For some unknown reason, somewhere deep inside, even after all of this, the surgeries, the treatments, the scars, the pain, anger, fear, the grief and the loss... I still think they got the wrong guy.  

They made a mistake.  

It can't be me.  

I have always had trouble with commitment, and I may be known to rebel against authority on the odd occasion, I'm a free spirit tree-hugger, and a stubborn one I'm told.  So wrap that all up in one package and label it with a life-sentence of MELANOMA and I'm a permanently cranky fusspot ready to throw a hissyfit at any moment.  And I sure as hell don't want to be pumped full of drugs to add to my general confusion and malaise.

I just want to cocoon, to be alone, to take off for some new place where I don't have to talk or think about it.  I can just float along a merry little river, leaving all of this behind me.  Hang out in the sun, paint coconuts on a beach somewhere, or serve cappuccino to tourists in my Tuscan Trattoria.

But then I wake up.  Hhhmm.. it IS me they're talking about.  And I have to step up to the plate and take what is offered to me.  If I ever want to make it to my Tuscan Trattoria then I'd better get my sorry ass in the chemo chair and do as I'm told.  

Part of the complication of having the choice of which method to use to fight cancer in my particular situation, is the option to not do it.  I hear my Oncologist in one ear, saying I don't necessarily HAVE to have all eight treatments, that four is the standard of care for stage IV patients, so may be fine for my stage IIIB.

And then I hear my family and friends and family physician encouraging me to stick with it, how can there be harm in having more of the treatment?  They must have planned this clinical trial with eight treatments for a reason?? Best case scenario is it holds off recurrence that much longer (as opposed to having stopped at the fourth treatment, last Thanksgiving, thereby having the possibility of being back on the hot list by now).  

The statistics from this trial are still rolling in, and I consider myself fortunate to have received this drug and now that I have completed the trial I am part of the research they are doing in order to help melanoma patients.  

I guess I will concede and congratulate myself on that part of this accomplishment.   

Otherwise... I had good discussions today with my oncologist and the research associate in charge of my schedule.  They gave me some details I have been worrying about, and gave me an idea of what my care plan looks like in the near future.  

They said the numbers are similar for non-recurrence and recurrence with ipilimumab and interferon.  Good stories and bad, still weighing out the results to better predict what I commonly refer to as CHANCE.

I was also able to confirm that it is indeed the drug company that has paid for my expensive treatments in this trial.  This little detail has caused me much anxiety: I hate the thought of four possibly unnecessary drug treatments being paid for by Health Canada. Some of my friends have called me weird for this admission, but whatever LOL  That's me, and that's what was bugging me.  

Going forward I have eight weeks left in the trial, at least three months of fresh side-effects, with the possibility of more after that, the new year will bring the first quarter since last August where I won't have had ipilimumab.  

CT scans tomorrow, then every three months still for another year.  I will continue to be monitored at Sunnybrook (Odette Cancer Centre) and I will be sure to report the information I receive from this trial study when it is done.  I am one of the last MEC3 participants to trickle in, as I slid in under the timeline wire last year when I qualified and rushed my paperwork through to get into this trial in the first place.  

Just because I had my last treatment today does not mean this is over.

Unfortunately, it doesn't work that way.  It is the end of this particular drug treatment, but what lies ahead is still very much uncertain.  I do know what to expect symptom-wise for the next few months, and I may even throw a pacman party when I'm feeling better, but who knows?  I can't commit.  I will just continue with this one day at a time stuff until it gets easier, whenever that may be.  

Happy week 60 of 68.  And thank you yet again to my family and friends for your love and support.  The flood of messages you sent yesterday got me to Toronto, literally.  And the texts, emails, messages, and facebook love today got me through my 90-minute IV infusion.  Thank you ever so much.  xoxo

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.

  

First Day of School

Here we are, finally on the day for which I have been loudly cheering for at least two weeks: the first day of school.  I have driven the girls crazy singing "It's the MOST Wonderful Time of the Year!" all around the house, especially post-SHOPPING (again!) or when they've asked "What's to Eat" for the 300th time of the day. 

Now here I sit, teary-eyed and reminiscing, bittersweet, dreading the year to come in some ways and happy for the girls in many other ways.  They are in grade eight this year. Grade 8! The fun one, when life really begins: they are at the top of the school, the responsible ones, the oldest ones... and for Claire and Cassie anyway, they are entering this year with less challenges than they were this day last year.  

Last year I was in a three-week rotation of treatments at Sunnybrook, and I was scheduled to have my melanoma treatment on the Tuesday after Labour Day, but I was able to sweet-talk myself a two-day delay so that I could take my girls to school for their first day.  

Grade seven, a new school, new teachers, much larger environment, older kids all over the place, staff all new to us, and me in cancer treatment.  I told them this this year should be a breeze! ;-)  To which they replied in this way as I took their photos before school:

(PS - Cass got out of her cast a bit more than a week ago, so here she is with a gimpy left leg but at least can go to school without crutches. Physio ongoing and day surgery in October to remove the heads of the screws in her ankle)

Which reminds me... I have an entire collection of first day of school photos... and today I feel like posting them here.  Claire and Cass don't read my blog anymore anyway (they say I'm too long-winded - imagine!?!) so they won't find out...right?  haha  Anyway, here they are:

Kindergarten (JK), SVE School:

 (Claire left, Cass purple)

Grade 1:

 Cassie

 Claire

Grade 2:

 (Cass left, Claire right)

Grade 3:

 (Cass purple, Claire right)

Grade 4:

 (Cass pink, Claire right)

(Grade 5 seems to be missing at the moment? 

Stupid cell phone drop in the dishwater!)

Grade 6:

 (Claire left, Cass right)

Grade 7, move on up to MCS, 

(Mom no longer allowed to take a pic in front of the school - 

WAY too uncool!) 

 (Claire left, Cass right)

AND TODAY.... GRADE 8.... waaahhhhhhhh

Article & Photos © Natalie Richardson 2015