Innovation is a Journey

Quick post to share a campaign that just launched: Innovation is a journey

I am honoured to have been part of this project and to support the work being done by life-saving pharmaceutical companies in the cancer space. Their research and development in innovative medicines is invaluable. 

Thank you BMS - you saved my life!

Watch the video

There is also an accompanying article for which I was interviewed, please feel free to check it out, here. 

“Even if something only works temporarily, that option could buy time until another treatment — and potentially a cure — comes along.” 

Wise words Mike, thank you. We live by this. 

Gastroenterologist: To Be, or Not to Be?

That IS the question.  More like... My relationship with the Gastroenterologist... will there be one?  or not.  Frankly, I'm still leaning toward NOT.

I have had a busy week of medical appointments to start the month of June.  Two trips to Toronto and plenty of anxiety, dread, and confliction.  I await results from the two rounds of bloodwork I had on Monday, as well as the routine head to thigh CT scans I had also at Sunnybrook on Monday.  

I haven't been feeling well, physically or mentally; CT scan drink plus contrast dye IV typically provide me a couple of days of tummy trouble and fatigue, and this time I have been in and out of a low-grade fever as well.  It's stupid - I hate it! *stomping my feet in tantrum*  I was a good girl though, and rushed to my family physician immediately on Tuesday after Monday's Toronto trek.  Family Doc has note of all of my experience and will be in touch upon receiving my test results. 

Part of my family Dr. de-briefing on Tuesday included an update on the Gastro situation.  

Quick re-cap: along the course of my ipilimumab (immunotherapy) treatments on clinical trial August 2014 through September 2015, I received some damage to my intestinal tract, and it presented itself for a while as some pretty persistent need to stay close to a bathroom.  (I am still squeamish about using the word diarrhea on my blog but I digress...)   20-ish% chance of getting colitis from these treatments, as I was aware when I signed the paperwork to become a fortunate guinea pig recipient of a drug that could "cure" my melanoma.  As chance would have it, I am dangerously close to a diagnosis of ulcerative colitis, but I am fighting it all the way.  

In March I met with a Naturopath to get a 2nd opinion (3rd..4th..), in preparation for my meeting with a Gastroenterologist at Sunnybrook.  We decided that I should begin taking 50-billion multi-strain probiotics every night.  So I did.  Most nights before bed I have taken four capsules of a reputable Canadian-made 12-strain probiotic and ...drumroll please... my tummy has vastly improved.  Not perfect, still have a random day or two per week surprise dash to the bathroom, but it is nothing like the exhausting daily struggle I was having.  

My medical oncologist is worried about said tummy trouble, and strongly encouraged me to have a colonoscopy, to assess the damage done by our beloved pacmen.  I refused scope without first having a consultation with the Gastro (which has made Onc slap my wrists - but I wanted to try the probiotics first! Not to mention I am only 8 months post-treatment so it is reasonable to expect my body will need time to heal).  Finally last week I had a consultation with the newest member of my medical team.  

Interesting gentleman, quite close to retirement but still going strong, with a waiting room full of patients wanting his help with their varied experiences with Crohns and Colitis.  He gave me a quick run-down on the most common causes of diarrhea (high-fibre foods, dairy, caffeine, gluten, alcohol) (most of those I already avoid...except..um of course the alcohol), and ran over the statistics of possible risks my intestines could face during and after a scope. (ick)

I informed him that in the time that I had been waiting for my consultation with him, my tummy was much better, and told him about the probiotics (which is the only thing I have changed in my diet since March).  

He gave me a haughty explanation of how a probiotic wouldn't work as it is an unregulated natural product that is a shot in the dark very unlikely to affect my immunotherapy-induced inflammation. "Just as we wouldn't treat an infection with the wrong type of ANTIbiotic, we couldn't expect one PRObiotic to help if we don't know what the exact problem is." (but I am taking a 12-strain probiotic. I kept quiet as I would have appeared to be arguing) 

He also said I should not use the refrigerated probiotics found in a health food store, that I could catch some worse bug from a faulty bacteria floating around in the probiotics.  He said I should seek out a pharmaceutical brand in a drug store.  Really.  Hhmmm that goes against everything I know about probiotics. 

He suggested that I stop taking the probiotics altogether for a week, and if the diarrhea flares up then take the probiotics again and it if stops then he would say I am the ONE person that works for.  *huff* 

I asked him if the scope would show damage done last year, and if yes, would the only cure be to take prednisone?  Because if so I could save him some time as I will NOT be taking prednisone.  He puffed up and said "WHY NOT? Prednisone is man's best friend!"  I gaped in disbelief as he went on to ask me if I was saying that if I was lying on my deathbed from diarrhea would I refuse to take prednisone and just agree to die?  I said NO, but I am not in that situation right now! Aarrghhh  

I asked for help to understand how immunotherapy had damaged my digestive system, and if it can heal itself with time (and/or probiotics, which I didn't mention again), and he said well Dear, I don't know.  "These immunotherapy drugs are all new territory for us and we don't know."

Well that's what I needed to know!  I had refused scope appointments because I wanted to hear that - ARE we going to find anything concrete out from a scope?  Because if my tummy is feeling better and I am managing it on my own then WHY undergo another invasive medical procedure?  I'm all for being a guinea pig, but I draw the line at some tests that are costly to the medical system and to my own mental and physical well-being. 

I say that at the risk of offending my wonderful Medical Oncologist, the Boss.  She was adamant that I have this test, and I am still considering that I will, if for the purpose of her research.  Or if I have another flare-up.  I was planning to speak to her about that in our appointment on Monday, but she wasn't there, so I escaped the slap on the wrist I am sure I am going to receive.  

Her stand-in happened to be the lovely Dr. I met at the Queen's Park event, and I filled her in on the situation.  She said she would relay my experience to my Dr. and have her call me upon her return from the melanoma conference in Chicago.  

I have mentioned before that I am amazed at the amount of self-advocacy a patient has to do in order to find balance in a complicated medical situation.  I know that I risk offending my Oncologist by refusing the scope, and I am not doing it out of disrespect, I am simply following my gut feelings ..oops, pun not intended.  I just want to get over all of this stuff and move on with my life.  Isn't that what I'm supposed to be doing?? Yes, I am stomping my feet in tantrum again.  I am incorrigible. 

So.... I relayed all of this to my ever-calm family practitioner and she agreed that is is completely acceptable to wait it out and see what happens.  She agrees with myself and the Naturopath about the probiotics, and encouraged me to continue as I have been.  If my tummy trouble persists or flares up, we will cross that bridge then.  And I will have the scope, but closer to home, with a copy of the report to go to my team at Sunnybrook.  

The Gastro also left it with me to call back if I want a scope or another appointment, but until then I am free to go... he did not consider a scope urgent, especially after my report that things have improved since the winter.  Perhaps we will meet again, perhaps we will not.  

Prednisone

Here we go.  Yesterday I began a course of prednisone to attempt to help my body stop the severe and often unpredictable tummy trouble with which I have been struggling.  I have been trying to avoid this drug for over a year, and yesterday my medical oncologist phoned me (again) and strongly advised (again) that I get my sorry butt to the pharmacy and take the prescription she faxed to Meaford.  

It is nasty stuff, I have read about the side-effects and I know of several friends' horror stories about it.  This is a pharmaceutical that is evil to the human body. I am inspired to write a blog post about a patients right to refuse any given treatment, and how self-advocacy works in the medical system.  I know I can refuse this drug, but I also have to balance the medical opinion of my very experienced highly trained doctors.

My chief oncologist explained a course of prednisone like this:  for someone in my situation, who had eight treatments of a very potent immunotherapy, my immune system was kicked into overdrive and seems to have stayed there.  

Under the influence of immunotherapy, the body is triggered to fight melanoma cells, which it seems to be doing, as I have not had recurrence since August 2014.  Well it doesn't "fight" the melanoma cells exactly; the true medical explanation is this: ipilimumab is a fully human monoclonal antibody, blocking CTLA-4 receptor and potentiating T cell activation.  

Along with this trigger, the immune system can start to attack the body itself, usually beginning with the intestinal system.  So now I need the help of a powerful steroid to calm the inflammation in my digestive system, tell my body to stop being upset in there.  

Prednisone belongs to the group of medications called corticosteroids. It is used to treat a number of conditions. It is more commonly used to treat allergic reactions, some skin conditions, severe asthma, and arthritis. It can also be used to treat steroid deficiency in the body, certain blood disorders, certain types of cancer, and ulcerative colitis. It works by reducing swelling, inflammation, and irritation; by suppressing the body's immune response; or by replacing steroids when production by the body is deficient. (for more info click here)

I will take a 15-day course of this drug, beginning with 50mg (10 pills) per day for three days, then 8 pills per day for 3 days, 6 pills for 3 days, 4 pills for 3 days, 2 pills for 3 days, then stop.  The pharmacist explained that the first large dose should boost the body's ability to calm the inflammation, then the dose tapers off gradually so that the body realizes that it needs to produce it's own steroid (still/again?) to do the job itself. 

When I signed up for this trial I knew a future of ulcerative colitis was a risked side-effect, but dying of melanoma was the alternative, so I did what I had to do.  I went for it, figuring I'd somehow escape the chances of the bad or long-lasting effects I had been informed were a possibility.  I am in no way upset with my physicians, they are not responsible for this, and I am not angry with them.  

I am simply upset that I have to take this shit.  Weight gain and severe mood swings are just the things I have been trying to step away from!  And now I am set back.  I spent most of yesterday in tears; I have been just starting to feel better about how to manage my melanoma going forward, start thinking there may be a light at the end of the tunnel and then I get pushed back down again. Get a reality check.  Things will never be better again. Normal is gone. Carefree has checked out of the building.

My lineup: prednisone, and a "tummy protector" to help reduce stomach damage from pred, then daily vitamins - B12, iron, calcium, and the special D. Plus the two meds on my nightstand that I was too pissy to photogragh.

I took the pills at lunchtime and sure enough the predicted nausea remained until bedtime, where insomnia took over.  I am dizzy, very thirsty, my hands are shaking, super hot/sweaty last evening now freezing this morning, and I feel like I am already puffing up.  My family physician said that the weight gain or puffiness associated with prednisone is water retention, and that when I am done taking it the puffiness will go away.

  

The trick will be to not increase eating, as the possible side effect of increased appetite goes hand in hand with the spikes of energy and/or perceived euphoria from the prednisone.  Family doc said that my house will be spotless because I'll have so much energy!?  HA  I'd like to see that.  That is a positive though I guess, as my fatigue has still been a problem.  

So the next few weeks around here will look this: Fat me running around the house brandishing the swiffer, alternating between crying and yelling at my family. Oh yes and let's not forget the constipation... diarrhea be gone, but the alternative?  Great.  :-( 

Hopefully we achieve the goal of stopping the intestinal distress, and I can get back on here in a few months lamenting how much better I feel and wondering why I ever fought against the prednisone in the first place.  If it doesn't work however, I will be referred to a gastrointestinal specialist to investigate further.

In the meantime, I will deal with this step along the journey privately, stay tucked away at home for a bit, and just suck it up.  I have already been pretty antisocial, and hibernating has been therapeutic for me and for the girls, but for the next couple of weeks I am going to lay low and just stay in my corner licking my wounds.  

 

 

 

Article © Natalie Richardson 2016

Week 68 and the R-Word

I am here.  We made it.  Week 68 marks the conclusion of the MEC3 clinical trial for ipilimumab treatment of metastatic melanoma in which I have been participating at Sunnybrook since August 2014.  

I will still have head-to-knee CT scans every three months for monitoring recurrence, and my bloodwork will still travel to Chicago for research purposes, but the technical time frame of the trial is finished.  Pacmen are in and continuing to do their work, and I am looking forward to January when the three month post-treatment time hits and (we are hoping) my side effects will subside.  My last treatment was at the end of September but the tummy trouble, fatigue, and chemo brain remain - January 2016 brings the first of a treatment-free period since my diagnosis in April 2014.  

It is no secret that I have been struggling with my cancer battle, both physically and mentally.  The emotional turmoil rivals my physical scars for pain and confusion.  I can recall the exact moment that I last felt I was my care-free self.  Let's just say it was a long time ago.  My carefree is gone, replaced by anger and fear; I have been working hard to put my life back together in some semblance of what it used to be.  Like a puzzle with some broken pieces, I am hoping I can be put together, just maybe with some tape on the damaged spots. 

This is where I will begin: remission.  Yes, I said it.  Last week I met with my Endocrinologist who monitors my post- thyroid-cancer situation, AND my Medical Oncologist who has my post-melanoma situation under close surveillance.  They both confirmed what my lovely Family Physician suggested, that I can consider both cancers in remission at this time. 

I have told a few people but this is the first official shout from the rooftops... I have had to let the information sink in and have enjoyed a quiet swim in it privately before I could put to words my feelings about it.  I have been in a state of shock since diagnosis a year and a half ago, and now I feel that stress may actually get a reprieve.  

I am in remission.  I feel relieved. 

This is the first time since April 2014 that I actually believe I may live to see my daughters graduate post-secondary school and see them build their lives and families.  

This is the first time I have instinctively felt that I can refer to myself as a Survivor.  

In the past year I have referred to myself as "survivING," but that pales in comparison to the relief and hope I now feel in my heart and soul.  I really may actually have that pacman party I have been talking about.  I may not be done with my cancer war, but I have survived the first battle. Major battle.  Survived. 

My gratitude is enormous, for my family and friends who have helped my girlies and I in countless ways.  I am grateful for the stroke of "luck" that got me the ipilimumab treatment in the randomized draw I signed up for.  I am grateful that my body has been strong enough to tolerate the treatment.  I am grateful for the continuous care and support I get from my medical team.  There are so many pieces that have come together to get me through this past year and a half, it will take me another year and a half to name them all!

A few weeks ago I wrote about the R-Words in cancer, and I do need to clarify my use of the word REMISSION, as it relates to me:

Papillary Thyroid Cancer - my Endocrinologist said that remission is not a term used in this type of cancer.  But my 6-month thyroid ultrasound shows "no evidence of disease."  That is the good part! My bloodwork and scan was normal save for a few enlarged lymph nodes, and I will have another ultrasound six months from now, but in the meantime yes, I can call it "no evidence of disease" thanks to the surgery last December and the radioactive iodine treatment in March 2015.  Thank you!! 

Stage IIIb Nodular Melanoma - similar to the Endocrinologist's explanation, my Oncologist said that remission is not a term used in the field of melanoma treatment, it is actually a Hematology term (blood-related cancers).   She said we can refer to my melanoma as "under surveillance," no evidence of disease at the moment, based on clear CT scans.  I'll take it!  Thank you!!!

In any case, I am going to use the word remission. Remission Remission REMISSION!!

I am still at high risk for recurrence and the melanoma remains the more serious threat, but for now I will bask in the glow of some sweet sweet survivorship and work my ass off to get my life back.  

 

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.

  

Testing Testing 1 - 2 - 3

Last week I shuffled off to my scheduled battery of blood tests to try to get some help with how crappy I have been feeling.  I have now processed and can put into layman's terms the conversations I had with my doctors, and I thought I would share these results here so as to shed some light on the mysterious "blood work" I often mention.  

Commonplace in western medicine is to draw blood and analyze the particles within to learn valuable information about a patient.  Anyone with a disease or health issues being monitored by a medical professional is familiar with The Lab Visit.   Even when doctored by a Naturopath there are quite often blood tests recommended or requested to help determine health dilemmas, and that blood work is done in the mainstream hospital or laboratory as well.   

 

<---  That's me.  When I register for my bloodwork at Odette(Sunnybrook) I get a baggie of vials to hang onto until it's my turn.  Those vials are special for the trial and are in addition to the usual seven more vials chosen in the lab.  My record is 23 vials of blood drawn at one visit!

 

As a stage IIIB cancer patient I have blood taken at MINIMUM every six weeks, to monitor my health but also as stipulated by the clinical trial to treat melanoma in which I am participating.  They check for many different things including general information such as pregnancy, HIV, anemia, high blood sugar, bad cholesterol - all of which I consistently test negative for thank you very much.  They also watch closely many other factors including electrolytes, liver profile, cortisol, hormone stuff, and a bunch of things ending in "-cytes."

For the post-thyroidectomy papillary thyroid cancer side of my journey, I also have blood tests every three months plus at random times if needed, based on my feeling of "general well-being."  They check my TSH, Free T4, and Thyroglobulin, which apparently indicate whether or not I am taking an appropriate dose of that thyroid hormone replacement medication every morning an HOUR BEFORE my morning coffee.  Based on that and my general yuck feeling and weight gain, we decided last week to increase my thyroid hormone replacement pill.  Because I had two of four parathyroid removed they also have to watch my calcium levels so they check calcium and albumin regularly, to check on my calcium supplement intake.  

One nice thing about these tests is that I can see them all and understand where I am with them.  Sunnybrook posts them all on my online chart thingy I can log into, and my family physician explains them to me as well and shows me cool graphs of my results.  These tools help paint more of the picture of where I am at, how my history has been, and how I may expect to feel if any of these things change in the future.  

Who wants to know all of this stuff if they are not a doctor?  Some do, some don't.... I do, when it comes to feeling ill and/or fatigued.  I can watch trends and learn about how my body functions. Or doesn't.  

I want to detail some of my results for those who may experience the same things but without the benefit of the amazing doctors I have the privilege of working with.  In all of my charts of results it shows what my blood value is, and it shows the optimal range of where it should be.  Here are some of my favourites:

• Ca (Calcium)  - mine is at 2.11, optimal range is 2.10 - 2.55 mmol/L

• Albumin - mine is at 43, optimal range is 35 - 50 g/L

If calcium is too low (hypocalcemia) then there is risk of seizures, muscle spasms and paresthaesia.  When I get cramps and tingling pins and needles in my hands then I hurry up and take an extra dose of calcium and the accompanying fancy vitamin D thingy I receive by prescription. 

• Fe (Iron) - mine is at 29, optimal range is 7.5 - 32.2 umol/L  

This one is unrelated to my cancer, but I find it interesting because for years after a period of vegetarianism I struggled with low iron, to the point that I was unable to donate blood. I took iron supplements and BBQ'd lots of steak and I am now happy to report this is one that I don't have to worry about.  

• Platelets - 177, optimal 150 - 400 x10E9/L

• White Blood Count - 4.6, optimal 4.0 - 11.0 x10E9/L

• Auto Lymphocytes Abs 0.9 (LOW), optimal 1.5 - 4.0 x10E9/L

I'm unclear as to the details of these results, they are on the low side, but I am told this is normal for someone receiving the type of immunotherapy treatment that I am. Doesn't directly relate to how I am feeling, just internal mumbo-jumbo.

• Free T4 (Partial) - Thyroxine, Free - mine is at 15.4, optimal range 7.5 - 21.1 pmol/L

• Thyroglobulin, mine is undetectable, which is a good thing.   

Thyroid levels seem to be okay, we have increased my daily dose and will check again in September to see how I am feeling, but otherwise we await the thyroid ultrasound in October to check for recurrence.  Sadly there is not a blood test for that.  Nor for melanoma, check for recurrence is by CT scan.

Well if you're still with me after all that, thank you. LOL  If you found that interesting in any way then thank you also, bravo!  

To me it is strange how it all works - sometimes I feel like a guinea pig, sometimes like a science experiment, and sometimes like a sick person who doesn't care about these details I just want my life back.  Regardless, we press on, doing what we can to figure out whatever we can, and we use tools such as these blood tests to make educated guesses about what decisions to make in my health care.   

Week 53

I think I got my grumps out in my last pity-party blog post, perhaps that was a little case of writer's block?  Thinking if I get that out of the way, I can write about the good stuff again.  The fact that I have gotten away from my writing hobby is an example of how disconnected I have been feeling from everything.  

I have mentioned before that I don't feel well, I am not myself.  I am not as quick or as clever as I was before, but, having said that I want to describe what other things I have been up to.  

As a typical Gemini personality I seem to be able to function on both sides of the happiness spectrum?  Comparable to a "functional alcoholic" perhaps, I maintain a "functional cancer patient" lifestyle.  I go out in public and people compliment my "healthy" appearance, but inside I am screaming UGH!!! I feel YUCK.  I cook meals and drive my kids places and do my errands, but I also go to my appointments and consume my prescriptions and bear countless needle pokes.  I should be grateful for all of it, and I know somewhere inside I really am.  

Until I am able to truly embrace that gratitude my plan is to keep busy with the stuff I have always wanted or needed to do.  Plan for the worst, hope for the best.

I have been busy indeed, trying to just live the life I keep complaining that I am missing out on.  Obviously I am not yet back to work, that is still a long way off.  I do not even complete this clinical trial until November, and there will still be plenty of physical and (obviously) mental work for me to do after that.  

I often fantasize about being back at work and happily greeting my old customers and then I turn around, visualizing the complicated weekly cashier schedule it is my responsibility to write, and I cringe... I know my co-workers would have a field day with my dim nature these days and my forgetfulness, and the debilitating fatigue which habitually turns to outrageous irritability.  hhmmm... I don't think I would last long back at the office, not ready yet. LOL They would eat me alive!!  Or I would eat them  Aaarrrghhhhhh!  ;-) 

I have been trying to think of how to explain the type of fatigue I am experiencing... cancer friends please feel free to comment!  It is some unique heavy-in-the-bones feeling that just stops me in my tracks at any moment.  I DO push myself all the time - I am more active now (especially with puppy and kid on crutches!?) than I have been in a year.  But there are days when there is just not a drop of energy left in any single one of my cells. At noon!!

It is physical but also mental, it is what makes me shy away from visiting at this time.  It is not that I don't WANT to visit my friends I haven't seen in forever... it's just that I CAN'T.  Yes, there is such a thing as can't, I know, because I am living it.  
I am easily (unexpectedly!) overwhelmed, especially by noise and commotion.  And usually I hide it, but suffer over it later. 
I DO push myself all the time, and it barely covers the bases.  I have to pace my activities and my timelines. If I had a full staff of housecleaner, cook, gardener, chauffeur, timekeeper, executive assistant, problem-solving Mother bandaid-applying stand-ins then I'd be laughing!  Yes please sign me up for visits in between my naps and lymphedema massages.  hey...this actually doesn't sound like a bad idea........

At the end of June I had my seventh of eight pacmen (ipilimumab) treatments, and at the time I had planned to write a blog post about how quickly time had flown.  I was being hard on myself for all of the things I had not accomplished that I thought I should have in that three month time span.  

Instead I turned my attention to all of the things I HAD accomplished, namely adopting our lovely chocolate lab puppers, getting some work done on my little house, and getting the girls through their very difficult school year of the awful grade seven. 

I had planned to list them but never did write it, somewhere between the insomnia and the broken ankle (Cassie's, not mine!) I have lost track of time and I am now closer to my next treatment than my previous one?  And my NEXT dose of CT scan water stuff.... bleccchhhhhhhh

 





<--- This is them, "encouraging" me to drink my huge bottle of hateful CT stuff while they drink their Pellegrino. *sigh*  ;-)











In any case, I have plenty of photos of what I have been spending my precious time on.  I hope you enjoy it as much as I have:

First off - hummingbirds!  I have never had a hummingbird feeder of my own, and one item on my summer bucket list was to get one, and more importantly, host a birdie at it.  Sure enough.. a few short days after I hung it for the first time, I got one!  We have a little hummingbird that visits every morning and every night (as long as I keep the liquid inside clean and fresh).  I managed to snap a little pic of him the other evening - not great quality but still, my first and happiest bucket list item - check! 

In May I had the electrical work done in my house that I have wanted to do for 12 years.  New electrical panel and all matching outlets all operational, modern, and safety-approved.  Happy camper!  

We did get away for a tiny camping trip, courtesy of Grandma and Grandpa Richardson we loaded up 3 kids, one dog, and all of our gear into 1.5 vehicles and took off to the land of no cell service.  It was great while it lasted...

Sadly this is where Cass had her longboarding accident and broke her leg, ending the trip in an operating room in Owen Sound.  

I have been teaching the girls Ukrainian, reading writing and spoken.  They are taking to it like fish to water.  :-)

I have been planning for a little renovation of our kitchen, including new cabinetry with drawers that will be easier for me to use, and new flooring without the grooves in it that trip up my heavy leg.  That should be happening in early Fall so stay tuned LOL  Here is a teaser of the flooring, cabinetry and countertop:

The girls had a little yard sale and lemonade stand one Saturday morning.  Went well and they did a great job!  Even got up at ssiixxxx  aaaaa mmmmmmmmm to set up.  Needless to say we did all nap in the afternoon that day. 

The other day I had an Arborist/crew in to properly prune the big trees on my property.  Another job that has been waiting for 12 years!  I am so excited to report that the trees are properly trimmed and are forecasted to continued healthy growth into the future.  Take a look at the before and after pics of our back yard-maker:

Oh and another bit of excitement here, Claire went on a trip out west with Scott!  They left last Sunday all loaded for deliveries in Winnipeg, Regina, and Saskatoon, then they loaded cattle in Alberta and they are now on their way home. She seems to be having a great time, Cassie and I have received countless giggly phone calls at all times of the day.  Scott may be ready for a break from pop music by the time they get home tomorrow? ;-)  

<---- I'm told she was allowed to get actually IN the truck LOL

Off they go!  --->

It has been an excellent experience for her, I have dubbed her the world-traveller and told her she now understands Canadian time zone changes better than I do (Saskatchewan is different in summer and winter apparently?). 

I have had a glorious (quiet) few days with Cass all on my own - the longest Claire and Cassie have ever been apart!  Our stress levels have decreased a bit, we have been able to bond with each other and the dog and cat, only having to agree with each other about our dinner menu (no three other bodies to interfere!) 

Just kidding... but we have had fun, and though I wasn't able to slip away on a little holiday this weekend I do not regret it, as I have been able to soak up my Cassandra.  We have had a couple days of movie marathons as well, she is a horror film buff, and TRULY one now that she has seen The Shining and Psycho! We watched those and then cleansed our scared souls with 80's comedies and romantic French films.

   

It will be nice to have everyone back under one roof next week... thankfully I go to Toronto and Barrie!!  ;-)   

The rest of the summer should be quieter..?  But we shall see.  Above all I hope to get to some writing.  And get Cass back on her feet, and keep from going broke with back to school shopping, and get some visiting in...  And and and...  

Puzzled

All week I have been wanting to write about this, but needed a couple of extra sleeps to mull it all over.  Visit with my medical oncologist on Monday was quite heavy/interesting, almost-panic-inducing... I am left puzzled.  But as my friend who was at the appointment with me wisely said: "Don't panic, one day at a time, monitor your symptoms, and in a month take a look and see where you are at. No decisions have to be made right now, so deep breaths - and immodium!"  

Long story short, we had a discussion regarding the clinical trial I was just blabbing about last week, and whether or not I should consider opting out of it.  Yes, really.  Talk about complete 1-80!  (AGAIN)

No secret, I have been having some issues with side-effects from my ipilimumab treatment, namely fatigue, irritability, forgetfulness (chemo brain), and ummm... the thing I don't really like to talk about but referred to prior as a comparison with "nosebleeds."  I am understandably private about this topic, but if I am to honestly explain why I may choose to leave my trial early, then I must make reference to "immodium."  That should be enough of a hint as to what my problem is.  

It is a common side-effect of ipilimumab, and I knew going in that I would risk the development of ulcerative colitis by receiving this treatment. The benefit of it being effective at controlling my melanoma was worth the gamble.  Or so we thought!  Now faced with the potentially serious implications of the tummy trouble I have been having, it may be time to consider a change in route.  Re-calculating............

On Monday my oncologist was concerned about my increase in side-effects, and my mini-breakdown about how crappy I have been feeling (pun not intended).  In part we think this is due to the complications of my having thyroid cancer on top of the melanoma: the melanoma people say I feel yucky because of the thyroid, and the thyroid people blame the melanoma. 

I had reasonably expected that my side-effects would decrease as I moved into the maintenance phase of my ipi treatment, thinking the symptoms I had (beginning in August and remaining steady throughout treatments every three weeks) would decrease after three months of not having the drug.  Not the case, as I was told on Monday, there is actually an increase in side-effects in the maintenance phase, it is a cumulative effect.  Yes, I noticed.

I was under the impression that a certain amount of  "chemo diarrhea" was natural, or that my diet may be affecting my system, but my oncologist strongly corrected me that NO, this is completely different.  This is IMMUNOTHERAPY tummy trouble - a different scenario altogether, one remedied only by immodium, or worse, Prednisone. *gulp*  The prescribed immodium was for my benefit, I was supposed to be taking it! Like, daily. 

Immunotherapy can turn against the body's own cells, attacking itself, in places such as bowels (that's why the high stats for colitis with this).

Oops - I have resisted taking the immodium for the most part, thinking that natural functions need to happen (my pagan tree-hugger traits run strong), and if I was reacting to the meds this way then that is a positive sign that it is working and kicking melanoma's butt.  However, I have now learned that no amount of food-journaling, dairy-avoiding, or green-banana-eating is going to help my cause.

Guess I did not understand that before, perhaps it is one of those little doctor tricks, where they don't tell you all the bad stuff so you don't psychologically or sub-consciously push yourself into that negative direction?  Knowing all along that I could opt-out at any time, I suppose the back up plan has been that I could bail if the "need for immodium" got to be too much.  

So here I am again, discussing the idea that I may have to leave the clinical trial for ipilimumab. 

I am goal-oriented.  I planned to see this through.
  

 *When will I accept the fact that with cancer I will never know what my plan really is!?* 

On Monday I learned  that only one other person at Sunnybrook has completed all eight of the treatments in this particular trial.  Wow, really?  I don't have any statistics, so I don't know if or how many of the others were forced out or encouraged to leave by their oncologists?

My oncologist explained that I have already received more than most of the ipilimumab, I have already gotten farther than the majority.  If you were to walk into a Stage 4 melanoma diagnosis in Canada today, you would be prescribed  four doses of ipilimumab, three weeks apart.  And that's it.  Depending on genetic factors and other details you may be eligible for other new treatments as they come available, but otherwise it's "watch and wait."  I hate waiting.... i m p a t i e n t ..........

This trial calls for eight treatments in total, to compare effects in an environment similar to interferon therapy, which is four and four.  Apparently there are no statistics currently available to my oncologist proving benefit in having the last four treatments of ipi.  Is your head spinning yet?  Mine sure did when she said that.  I may or may not have freaked out.  

I have been banking on this treatment being until week 68 in November, and in the meantime we get ready for the next step in therapy.  Not ready yet to consider the end of treatment! I am not okay with "watch and wait" - did I mention I have bad luck?? I don't know everything, but I do know that my melanoma did spread quickly the first time, and I don't really want to sit around and wait to see if it does it again. 

Yesterday I "celebrated" my first anniversary since diagnosis by running to my family physician and crying on her shoulder (again).  I described to her what the Boss had said and asked for her second opinion.  She said she would need to think about it, as do I, but her first reaction was to suggest that no.. indeed.. if I can handle the side-effects and control them with immodium, then by all means stick with it and try for the last two treatments on ipi.  

The idea is that the longer I am taking this drug, the longer it will stay in my system and work against the melanoma cells.  Complicated!  Oncologist said that it may or may not work that way, results of the clinical trial have yet to be compiled.  And family doc suggested that yes that may be the case, but what if the other person who did the eight treatments AND myself showed better results that the others, by completing all eight?  The famous WHAT IF.  

I have mentioned before that this is like trying to put a puzzle together.... missing a bunch of pieces!?

I decided to proceed with my treatment on Monday, as I did not want to make any rash decisions.  I will end by saying that I have until July to decide if I will continue with the trial.  If I use the immodium correctly, and now that thyroid is supposedly organised, I should be able to take steps to work on all-around well-being, and be able to cope with further ipi treatments.  If not, I bail.  Time will tell.  

NOTE:  One benefit of this whole discussion is that it has relieved the pressure I have been putting on myself regarding my diet and habits.  I have always favoured a high-fibre diet, and I was starting to worry that my need for cancer-fighting foods such as sweet potatoes, kombucha, and kale was conflicting with my need to prevent the tummy trouble.  I now know that the two are not related and I can blame the ipilimumab, not the veggies.  :-)

Article © Natalie Richardson 2015