Webinar - Survivorship

Well here it is!  Save Your Skin Foundation President and Founder Kathy Barnard led our discussion today in the webinar about surviving melanoma, and "Survivorship" in general. There were three panelists in addition to Kathy and the webinar administrator; we had a detailed and heart-warming question and answer period about our melanoma journeys to date, and our hopes for the future. 

This was my first participation in a webinar, and I think it went okay?  My webcam would not activate in the online app so I was spared that bit of camera-shyness - too bad about all of the primping and staging I did beforehand teehee!  I was surprisingly nervous, and feel like I flubbed my answers a bit.  I think maybe I should stick to writing - as Cassie said "there is no backspace or delete key when talking live!" 

I had prepared in writing what I wanted to say, but overcome by my case of nerves I went totally rogue, didn't follow the order of speaking that I had planned, and forgot a few details I had wanted to include.  One might think I know my story well enough by now that I wouldn't mess it up?!  In hindsight I realize I should have just read what I had prepared LOL - thank you Kathy for allowing me to cut my first webinar teeth on your time!   

I hope it satisfies Kathy's goals for the session, and even more I hope it helps people who hear it. I know it helped me today, to connect, to meet new friends, share my story, and to feel productive.  Helping each other in our little piece of community is a key ingredient to the survival recipe. 

The webinar will remain on the SYSF website for anyone to view, whether they are old friends of the site or newly diagnosed melanoma patients seeking advice and assistance.  

Click here to view the webinar on the Save Your Skin Foundation website:

Week 37 CT scan results

If I was superstitious, I would say I jinxed it.  I did all that bragging about how much energy I had and how clean I made my garage, and then poof! It happened.  All gone in a flash. One phone call puts me right back in the dumps--down goes roller coaster! The anxiety I feel anticipating CT scan results is well-deserved: it sucks!! 

Got some disappointing news yesterday: I have to have more lymph node biopsies.  I have mentioned before how I loathe needle biopsy of a lymph node. Painful. Invasive.  I have had two before, and I was seriously hoping to avoid going through it again.  

Last week when I visited my family doc to update her on my news from Toronto and treatment etc, I promised her that I wouldn't freak out about the CT reports like I did in February when I saw the reports after my January scans.  That scan showed some enlarged nodes in my neck, and I recall being vaguely puzzled about that as I was under the impression that I didn't have any lymph nodes left IN my neck!? 

After phone calling and emailing my panic to several of my medical professionals, I was assured that the nodes were enlarged likely due to the thyroid surgery I had just had at the beginning of December, not even a full two months before the scan.  The nodes were at still an acceptable level of enlarged-ness (?) so we should not worry.  Technically, it was a clear scan, my first one without bad news on it.  

Good thing I didn't get too used to that feeling, as the nodes are further enlarged now, and we are almost five months post-surgery.  My family doctor said she spoke with my endocrinologist yesterday morning, and they are going to speak with the head and neck surgeon to arrange a CT/ultrasound guided biopsy of the enlarged nodes on either side of my neck.  BOTH sides AGH!  :-( And I can't even be put under for the procedure, I can load up on sedatives, but I must remain awake. 

They are still thinking that these lymph nodes are "reactionary" - I think that is the word she used? - to surgery and adjusting to altered lymph fluid flow, but they need to do a fine-needle aspiration biopsy to "make sure."  It could be thyroid-cancer related, or a lesser possibility, melanoma-related.  

Quite unlikely that the melanoma "skipped" up to the neck, without metastasizing to organ(s) in between.  Abdominal scan shows no evidence of disease, that got the all-clear again this time, which is good.  

Now I am just waiting for the call to go for the biopsies, will update upcoming appointments ASAP.

~~~~~~~~
Update:       OUCH   .   BOO  .    WAAAAHHHHHH

I'm not alone:

Breaking bad news – the Sentinel Lymph Node Biopsy

 Obviously you share my pain, A Melanome Journey  xoxo

Spring Cleaning

Phew! I can't remember the last time I did that... I went out to the garage for a ten-minute job: to get the recycling ready for the kids to take out in the morning.  While I was there I decided to flatten the winter collection of corrugated cardboard also for recycling day.  Yuck - underneath that was some closet-cleaning garbage that had been squished there for a while in the damp. Got that picked up into bags and sorted the 3/4-empty jugs of washer fluid and picked up the broken flowerpot pieces and the car washing mitts that had fallen behind the spilled kids' outdoor toy bin, sorted that out, picked up the bikes, put the hose caddy in the driveway with the front deck table and my collection of stone garden ornaments, with my favourite, Buddha, right at the front, garbage and recycle all pulled out into the sun I pulled out the corn broom and started sweeping - and suddenly!  

Scott pulled in the driveway from taking Paige to school.  How could he make it home already?  I came out here at 8:30 - it can't be 10:00?! 

It was. And I was still in the garage. Cleaning and sweeping and sorting garden rakes. My bedhead-hair was all over the place and I looked down at my pajamas and slippers.  I realized that I had broken a sweat.  When the heck was the last time I had cleaned the garage?? It really needed it... it sure wasn't last year.  And here I was, sweeping and slugging away without a worry in the world.  I was thirsty, but not too tired, and I still wanted to rake the flowerbeds.

This feels like a triumph.  I was able to move our bikes around and check through all of my garden tools and Scott helped put the hose caddy in place and carry the heavy stuff and empty the windshield washer remnants into our vehicles, cleaning out his truck and checking our oils.  Gorgeous sunny morning, and I felt normal.  A glimpse of my old normal: caught outside with coffee breath and my PJ shirt covered in mud and cobwebs.  Nice!

I continued into the flowerbeds, considering stopping so as not to wear myself out, but keeping on because I just felt like it.  My poor lavender needed out from under those fall leaves, and the burgundy day lilies' leaves already had crooked shoots from forcing their way through the wet winter blanket I had not yet lifted off them.  

Even if I just got the flowerbeds uncovered, it was a start.  I might not yet get to put Buddha in his summer spot under the maple by the front window, but he was at least out of the garage.  I raked with the same fervour I felt trying on new outfits the other day - smiling to myself and muttering under my breath.  

I pondered what was giving me this burst of energy and how long it might last?  Last night I fell asleep on the couch immediately after supper, but maybe tonight I would not?  I could leave the flowerbeds until tomorrow or next week but NO I wanted to do it NOW.  I have these toddler-like temper fits (as my family and best friends well know) that often fuel me through difficult times.  I have been told I am stubborn.

Chuckling to myself I was thinking about that, and about blogging, and I recalled the day last fall that I named the Impatient Patient. I am rather impatient, that is no secret.  And this time last year I was a total disaster, only beginning my "patient" journey, I would yet come to prove how impatient I really am.  Many days since the surgery that left me confined to the couch for two months I have cried, yelled, stomped (with my left foot now only), spazzed out on my family and friends, and then cried again, until falling asleep in a grumpy (sedated) pile.  

I am no longer confined to the couch, and though I still complain about my cancer-imposed limitations, I feel a renewed energy toward the every day stuff I am beginning to find I miss doing.  

I liked having a couple of impromptu visits with passersby on the front lawn with my hair wigged out and sweaty dirt on my forehead.  I didn't even put my gardening gloves on, and I looked forward to scrubbing the dirt out of my nails when I would finally cave in to my morning shower.  I dug my heels in the dirt, and just did it.  I might not get finished, and I might have to lie down for the rest of the day, but in the meantime I was going to rage on.  Let's Go Lavender - It's Time!!

 

<--- That is actually my lavender, and Irish moss underneath the pretty tea rose my Auntie from New Brunswick brought me a few years ago. :-)  Still one of my favourite photos ever.  I WILL make my garden look this lush again this year! *foot stomp*

Some people comment that I am strong to be facing things the way I am, that  I am brave to be sharing such personal perspective from my journey.  I must argue that I am not really those things.  I am just living. 

I'm not brave, I'm a blabbermouth.  I'm not strong, I am stubborn!  I am not particularly graceful, I am just plowing through it.  Bull in a china shop.  As we all do, life goes on.  Every day is a fresh start to keep trying.  I am motivated.

And hey, now I have a clean garage, and flowers that will flourish and be ready for when I can get right in there to properly weed them with more energy.  They may forgive me for last year, as I am beginning to forgive myself.  Spring cleaning!  

Article & Photo © Natalie Richardson 2015

Momma needs a new outfit!

Who GAINS weight while in treatment for cancer?  This girl, right here!  Yes, clearly, I can see it, I can feel it, and I don't like it.  In 2003-2004 I lost over 100 pounds (by my own fitness choices and dedicated effort) so I do know how to do it, and I know I can and will get back to my physically fit self again, but in the meantime I have to deal with how I look right now.  

I will say right off the start, please consider it a disclaimer:  

I am not complaining.  

I am happy to be alive.  

I am grateful that I am not wasting away and dealing with being too thin as part of my cancer journey.  Many people suffer with that and I imagine some day I may have that problem, but in the meantime I have a bit of extra "fluff."  My oncologist has even told me not to worry about it, she went as far as to say "We like our patients to have a bit of extra weight, it gives us more to work with."   :-S

Not that I considered that free reign to behave as I wish, but combine that with being laid up after surgery, inactivity from feeling fatigued and weak, weight gain from treatment(S) and adjusting to medication post-thyroidectomy, trying to find balance between living for the day and not worrying about the future, and all of the lovely treats and foodie gifts we gratefully receive... I am a bit puffier than I wish to be.  

Having said that, I can be happy it gives me inspiration to discuss something that must be an issue for most cancer patient/survivors:  How we look.  

Part of the loss of control over our lives is how we are affected inside and out.  How we appear to others is a large topic for many of us, especially women.  Take for example all of the beautiful breast cancer survivors we know who suffer the loss of their hair during chemotherapy.  Wigs, scarves, beautiful henna tattoos, make-up and makeover classes - reasonably large connection to the cancer department.  All ways to help us feel better about ourselves, inside and out.

Because I have not lost my hair or any weight, like many cancer (or hepatitis!) sufferers who receive systemic therapy, I do not fit the stereotypical perception of a sick person.  When I am out I receive many compliments for how I look, and I appreciate that, but inside I cringe, thinking "oh dear I look terrible!!"  Thanks for lying to me! Or thanks for loving me. I digress..

I have had some time to ponder the things that affect my self-image, and my self-esteem.  Yes, there is a list. LOL Did you expect any different?  

Again, I am not seeking sympathy (or advice on how to fix it!), I just wish to share some points about my current state of being.  I am dealing with it, it is part of my journey and I am embracing it.

  

I am embracing it by going shopping!! hehe 

At least my shoes still fit... oh wait NO I had to cut the straps off my Mary Janes, Right!!     

Here is one of my solutions:

<---- And YES, I have finally come to that point in my life where my daughters and I share the same foot size.  YAY!! Six pairs of pretty flats yesterday - thank you Claire and Cassandra!! (for having big feet too)

We went shopping yesterday, a much-needed and long-awaited step in my rehabilitation.  I have been living in my yoga pants since my first surgery April 3, 2014.  The mole excision on my hip was surprisingly painful, and my dress pants were just not a comfortable fit after that. Yoga pants rule.  

Hip mole dent and second surgery scar and lymphedema in my right leg make most pants a daunting challenge these days, so yesterday I explored some other options.  

First off I did buy new jeans. Pretty exciting actually, and they were even a size smaller than I thought they would have to be, not nearly as big as my pre-twin-pregnancy days (for those who did not know me then, I was pretty heavy in my early twenties).  Stretchy and flat-fronted, I can tolerate them for the time being.  A long dress was in order also, and I found a cool pair of dress pants with fluffy wide legs that are so cute - and comfortable! - I just HAD to have them.  Some pretty breezy tops and accessories and I left the mall exhausted but feeling productive.  

I have something to wear for some upcoming engagements on my calendar, or even for when my friends come to visit and politely not comment on the fact that I am STILL AGAIN wearing my yoga pants.  

Inside I know that when I lose the weight I can donate these clothes (as I did with my last XL wardrobe) to someone else who needs them, but in the meantime I can feel stylish and a teensy bit more like my old self.  

It took some work to cover up the lymphedema leg in a comfortable way, as well as the scars.  I am quite self-conscious about my scars, but the girls say I shouldn't be.  They maintain that "a scar is proof that something tried to hurt you, but didn't succeed!"  A couple of my male friends too have assured me that my scars are "cool" - not every girl has a dent in her butt!  I am unique and remarkable.  HA HA. 

The one scar that I couldn't cover with clothing yesterday was that from my thyroidectomy.  32 surgical staples around the neck and collarbone make for a decent residual effect, and though it has healed well, I still feel it. And see it.  Warm weather is coming and I am getting tired of sweating under my collection of pretty scarves, plus I miss my awesome collection of jewelry.  I am a necklace nut. 

So what if my neck is a bit caved in on one side?  It is still mine.  I have thought it was swelling on the left side of my neck, but when I finally forced myself to examine it the other day in the huge hotel mirrors I couldn't avoid, I realised that the swollen-looking part is not actually swollen any more. The part below it is just caved in, hollowed out.  My hip-leg area is like that too, and I have seen it in others who have had similar types of surgeries.  They removed a bunch of meat with the lymph nodes, tissue that will never grow back.

Along with that came my sensitive left shoulder.  As I was shopping yesterday, bumping into jewelry racks with my backpack LOL yes... my backpack, it occurred to me that I might look like one of those grey-haired hippie types who wear backpacks instead of a stylish purse?? My left shoulder received some nerve damage during thyroid surgery, and it is no longer comfortable to carry a purse on it like I did.  

For the ladies reading out there... ever try to switch your purse side?? It just does not work.  I spotted a gorgeous backpack a few weeks ago in Toronto and HAD to have it too.  I now wear a backpack to carry all my stuff, it has padded straps and evenly disperses the weight of my load.

So clothing covered and accessories dusted off, one remaining physical feature on my mind:  my pale skin.  Yes, my lack of tan.  All over. My face, my scars, my arms and eeeek legs, I was not even this white when I was born.  I can't even say I am rockin' the Snow White look. To me, I am blotchy and ghostly looking.  There is not enough makeup in this house to fix that. 

I am adjusting to that, as I consider my relationship with the sun. Obviously it would not be acceptable to be a melanoma awareness advocate with a beautiful tan?  

Again I have to weigh out my acceptance of that part of my appearance.  And how much I care about how others may or may not perceive my acceptance or lack thereof.  

Perhaps they wouldn't notice?  Quite likely they do not care.  Maybe they love me regardless and accept however I look as part of the package?  I am still here and that's what really counts.  How I look while I am here is important to me, but it is just one part of my journey.  

While I work out the issues on my inside, I may as well wrap the outside in a pretty new outfit.  Fake it 'til you make it? Or good fashion sense, either way I will be more graceful about accepting the compliments. And facing the mirror.  

Article and Photos © Natalie Richardson 2015

Webinar: Surviving Melanoma - A Discussion on Survivorship

Check it out - I have been asked to be a guest on a panel of melanoma survivors for this webinar next week: Thursday April 30, 2015 at 12:45 EST.  It is the fourth in a webinar series created by Save Your Skin Foundation.

Yesterday the group involved had a conversation via the webinar app. We introduced ourselves and chatted a bit, about the webinar and about lives, our kids, and Nigel's marathon success.  

I immediately felt at ease, and found myself laughing with Kathy and the others regarding personal and somewhat funny situations we have found ourselves in during our cancer journeys.  It reinforced in my mind that I have found that sense of community I need, and I look forward to getting to know these new friends. 

I am also looking forward to sharing my story and this discussion with anyone who wishes to hear the webinar.  It is a helpful resource for patients diagnosed, or for anyone trying to understand how it is to be on the melanoma roller coaster.

It is easy to register and view, just click the image above to link to the detailed instructions.  Thanks!

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

Treatment Day

Thought I would chronicle a day in the life of the Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, Ontario.  

This description of a cancer treatment day is written as I have experienced it, receiving the immunotherapy (ipilimumab) for melanoma that I am:

7:45 a.m. - Arriving early ensures a good parking spot in the lot closest to the north entrance of Odette, not mandatory, but helpful to the heavy leg hike outta there at the end of the day.  Register at main reception, and put red hospital card in line with others waiting at the Lab for bloodwork. Drink lots of water day before and all morning, helps nurses get a good vein. No fasting required, in fact, a decent breakfast is recommended (in my case anyway).

 

(Nice and bright - the girls say it looks more like a mall than a hospital. 

That is Main Reception.)

8:00 a.m. - Lab opens, wait time varies. There are about half a dozen chairs and lab technicians taking blood so it goes pretty quickly, usually under half an hour?

After bloodwork is drawn, or while waiting for the vampires, fill out the online "How Are You Feeling?" symptom screening questionnaire to have ready for oncologists' records. 

Also check in at the Chemotherapy Unit with white hospital card.  

9:00 - 10:00 a.m., varies - Get called in to waiting room to meet with medical oncologist. There are several waiting areas with rooms/offices, all labeled A, B, C, D etc. These clinics line the one side of the centre on the main floor, and the chemotherapy unit is on the other side.  Downstairs is the radiation unit and the Druxy's cafe.  

Wait for oncologist to come in, have vitals recorded by research associate for the trial paperwork, update nurse and/or resident Dr. as to side-effects and any news related to treatment.  Meet with the Boss (more on this weeks' consultation in a subsequent post), look over results from bloodwork, discuss symptoms and latest CT scan reports as well as any other health details applicable.  Pending good bloodwork and discussion, medical oncologist sends through Approval for Treatment.

My oncologist and family physician keep in touch; patients can request all notes/results be sent to any other physician in the Ontario health care system.  My family doc and dermatologist as well as oncology team at RVH in Barrie all receive updates from Sunnybrook whenever I am there. 

10:30 - 11:00ish? - Register with nurses at the Chemo nurses' station, get banded with a white plastic hospital bracelet.

Get comfortable in the seating area in front of the giant tv screen update board.  Depending on my mood I may sit facing the screen to watch my number in line for a chair.  This screen changes very frequently, with patients identified by their numbers only, you can see when you have checked in, when your medication has been approved, when your medication has arrived, and when your chair comes available for you to receive treatment.  

The time in this space has been different each time I have gone through it.  Sometimes the medication is approved quickly, and sometimes not.  Usually the pharmacy is the lengthy part, as they are processing many chemo orders - plus mine has high security as it is protected by trial regulations (and an expensive price tag).  Once the drugs are ready, they are delivered to the chemo unit by pharmacy porters.

I haven't calculated how many patients might be treated in a day?  But there must be at least ten wards with four chairs or beds each?  Some treatments last hours and some just part of a morning or afternoon, people move through the place quickly, for the most part.  

You can get a buzzer/pager if you need to leave the centre for any time while you are waiting for your treatment.  On Monday for example we zipped down to CT scan to ask nurse Pat how I should proceed Tuesday morning when I had endocrinologist appointment at 9:15 a.m. in H Wing and CT at 11:00 a.m. back in the basement?    Then we got sandwiches, fruit and juice at the cafe to munch on before or during treatment. 

11:15 a.m. Poof!  Called to the chair already, good thing we didn't linger in CT or the cafe!  (a couple of times before I wasn't called to the chair until 2-3:00 p.m.... that's a long stare at the big screen)

Settle in and small talk with nurse on duty in my chair/room, get hooked up to saline IV, wrap up in blanket and sip apple juice, wait for the drugs to arrive from pharmacy.  (Odette has their own pharmacy, independent of the main hospital)

 

See small pink spot there close to the top tape?  That is scar from last mole excision; shave-off and two stitches from dermatologist in February ---------------------------------->

12:00 p.m. - begin ipilimumab treatment.  Mine is a 90-minute infusion, with vitals being taken every half hour, and for an hour afterward.  Go pee before treatment to avoid having to take the pole to the bathroom!  Given the length of treatment itself plus the saline in the lines, bladder is always full by the end of this leg of the day.  

During treatment it is permissible to eat whatever you need, some people nibble on sweets to help with side-effects they experience during treatment.  I don't have any problems during my infusion, just hungry/munchy throughout the day.  I usually have a turkey or salmon sandwich on rye (nice and soft to eat while reclined, and not too noisy so as to not bother other patients). 

Patients are permitted one visitor during treatment, they can stay for the duration, which is helpful for reaching those sandwiches.  Cell phones, laptops etc. are also allowed, on quiet of course.  I have more than once charged my cell while taking in pacmen.  

Comfortable, bright rooms with view of the north entrance of Odette and the Wellness Way entrance to Sunnybrook.  I am amazed more people do not get run over by those huge buses!

2:45 p.m. - unhooked from IV and free to go.

Not a bad days' work I guess... 8a.m.-3p.m., some needle holes, and a suitable sense of accomplishment.  

Exhausted but functional, I made my way to my hotel room and had a huge nap until I woke up starving and got some dinner.  Immediately back to bed and dreaming of pacmen doing their melanoma-hunting job, I slept like a rock until early the next morning when I had to get back over to Sunnybrook for endocrinologist and CT before driving home. 

All I was missing was my cat pillow: 

PS - Thank you Sonya for joining me on this day, your calm approach and easygoing friendship made me feel secure and comfortable.  I am looking forward to our next visit, when it's more like this...............  :-) 

Article & Photos (unlinked) © Natalie Richardson 2015

Nuclear Medicine Scan - Thyroid

Yesterday I met with the Endocrinologist to get results from my post-iodine radiation treatment nuclear medicine full body scan.  

Other than finding the scan to be quite relaxing and restful - no needle pokes or yucky potions to drink - I did not really know why I was having this scan other than to do as I'm told and follow the treatment instructions as advised.  Usually I dig into things more ahead of time, but I was so tired of researching thyroid stuff I just put my trust in the care of my Endocrine System Physician and showed up on time.

I figured we would be measuring any remaining radioactive cells left after one week post-iodine treatment.  Yesterday it was explained in full:  yes indeed we were checking to see how many glowing bad guys were left, and where they might be.  

See, thyroid cells left behind (cancerous or not) after surgery can still travel throughout the body, settling elsewhere and causing another carcinoma.  The point of the radioactive iodine as I mentioned prior, was to zap those thyroid cells with radiation-flavoured iodine treats and destroy them.

Good news and mostly good news: good news is that there was no evidence that any thyroid cells had traveled to other parts of my body.  Yahoo - that means they didn't float around either post-surgery or post-treatment and settle somewhere else to cause more cancer. 

The mostly good news is that the radioactive thyroid cells left behind (these continue to fade/decay as time goes on), did remain all around my ex-thyroid area. Throat, neck, clavicle.  

The amount I have left in there sit on a scale at "intermediate" level risk of recurrence of papillary thyroid cancer.  We are relatively comfortable with that. With the high rate of lymph node infection we already knew I wasn't yet out of the woods on the "easy cancer," but intermediate we can handle.

 

<--- Nice neck, no stupid scar, just sayin!

Follow up will be with ultrasounds on the thyroid area every six months at Sunnybrook.  I can technically call myself thyroid cancer free after one year without recurrence.

I still take the thyroid hormone replacement for life, dosage to be monitored by my family doctor, with whom I will be visiting tomorrow. 

I can also back off the calcium and prescription-vitamin D (Calcitrol/Rocaltrol) that I have been taking since thyroidectomy.  Should I have any symptoms of low calcium ie. numbness or tingling in the lips or face, or tingling or cramping in my fingers, then I need to hop back on that calcium and see my family doc immediately.  

Otherwise, that's it for the thyroid stuff and the nuclear medicine scan.  

Yesterday after my CT scan when the nurses reminded me to drink lots of fluids for a couple of days, I laughed out loud, thinking "ha ha honey - that teensy bit of contrast dye is NOTHING compared to the walking talking radiaoactive hazard I was almost a month ago!"  LOL anyway... I am now home, resting, drinking tea and waiting for my next CT scan results.

Clinical Trials

All around the world, people take part in clinical trials in all areas of medicine.  Clinical trials are very important because they help us learn more about diseases such as cancer. Thousands of people are helped each year because they decided to participate in a clinical trial and many more benefit from their participation.  

A clinical trial is a type of research study.  There are four main kinds of clinical trials in cancer research, those finding or improving methods for diagnosing, treating, managing, and preventing cancer. (more info: here)

I am participating in a cancer treatment trial, for the drug ^PrYERVOY™ (ipilimumab), affectionately referred to in my circle as "Pacmen."  I would like to put some clinical trial information in layman's terms, based on my experience. 

When I first began investigating options for the treatment of my stage IIIB melanoma last spring, I was informed about three clinical trials available (at the time) for my disease. 

Soon after surgery, pathology revealed details about a specific gene in my body which meant I was unable to consider the drug on one of the trials.  Every clinical trial out there has specific requirements, not everyone can just go on whatever trial is available.

The second trial was a blind trial, meaning I had a 50/50 chance of receiving the treatment/drug on trial, or I would receive a placebo, and I would not know which one I was receiving.  I immediately ruled that out as an option, as I don't have that kind of time (or luck!) to play with. 

The third option was the one I remained interested in and eligible for, I met the criteria required for participation in the trial, and I was clearly instructed on it's history and statistics, as well as the timeline and requirements for remaining eligible for it.  

This trial was available in the U.S. and Canada, in major cancer centres, so I was lucky to be able to receive it at Sunnybrook (RVH in Barrie did not offer it).  Approximately 1500 people are in it, with it being a randomized trial, half receiving interferon, the current standard of care for stage III melanoma in Canada, and half receiving the fancy shmancy "ipi." 

After heavy review of the paperwork, a series of blood tests, and a head to toe CT scan in July, I was deemed eligible to be randomized and I remained in suspense while they decided which team I would be playing on. I believe the headquarters for this study is in Chicago? and I signed forms stating that my samples of my blood and tissues were permitted to travel there for storage and future research purposes. 

I learned that this trial would entail eight treatments of ipilimumab in total, with treatments, testing, and follow-up totaling 68 weeks.  August 2014 - November 2015.  I learned the name of the trial (MEC.3).

 

I was clear that I could opt-out at any time during the trial, for any reason, health-related or not, ie. if side-effects were intolerable, or for other reasons such as having the opportunity to pursue a different treatment.  In fact, 52% of participants in the higher-dose first arm of this trial did opt-out, mostly due to side-effects being experienced (risk of developing ulcerative colitis), plus a few deaths. 

I was also well aware that requirements of the trial include many blood tests and quarterly CT scans for the duration of the trial.  Part of the appeal for this trial for me was indeed the frequent CT scanning, as I had already been told they are my only way of seeing spread of the disease.   

The exposure to that much radiation and the other relative inconveniences were still worth the chance that the ipilimumab would be my life-saver... or I should say, my time-buyer. 

I signed two batches of paperwork in my oncologists' office in July and August, plus a "Consent for Chemotherapy" form on the day of my first treatment.  

When I was there for my treatment in January, I was asked to sign a new consent form, containing revised statistics on my trial.  Though it is still ongoing for those of us in the last arm, this particular clinical trial for ipi is closed to new participants. 

I look forward to seeing the final numbers on this study, but in the meantime I appreciate them being proactive and accountable for stats as they roll in.  The new consent form discussed updated side-effect numbers, specifically the occurrences of diarrhea and symptoms of colitis, as well as fatigue and mental health issues. (check! check! and check!)  

They receive these numbers during the study from consistent and regulated monitoring of patients, with office visits and other methods such as my weekly parole calls.  

And after the clinical trial?  Well, we shall see... serious advances are being made in the area of melanoma, so hopefully there will be a new treatment for me by then.  Perhaps there will be another suitable clinical trial that will help with my stage/disease?  

Based on my experience to date with this clinical trial, I would do it again.  The stress from fear of becoming ineligible is worth it, and the stress from the side-effects are from the drug itself, not from the trial.  Hopefully it will work, give me that few extra years we are hoping for.  

In any case, being as I had already made the decision that this was my best option at this time, I jumped in with both feet and here I am... still being whiny about the side-effects I am having, and still fearful of whether or not I made the right choice.  I believe that is a common ailment of cancer patients; it is a guessing game, ON a roller coaster!  

On the Line

Ever see the movie version of Mamma Mia? I am borrowing a line from the movie: I occasionally torture my almost-teenagers with jumbled techno-terms such as this version of the word "ONLINE" - when I say "On the Line" referring to the INTERNET *gasps from the girls*  they groan and correct me - it's ONLINE Mom!!  hahahaha  Yes, I know that, I was ONLINE before YOU were born!  All of my other accidental gaps from Chemo Brain they seem to forgive (or at least overlook), but if I want to get a rise out of them I use that one on purpose.  

During research for my little guest blog post I showed off the other day, and since that was posted, I have met even more people online either via email or blogs or websites or facebook, etc.  I have found more friends battling melanoma, and I have had several moments of "wow! You took the words right out of my mouth!"  I want to jump up and say me too me too!  It is interesting, and a relief.  It is that unique sense of community that I take comfort from.

I am truly grateful for the good news and writing distraction this week, the timing couldn't be better, as I am having a low bunch of days.  I find myself cranky and explosive and exhausted. My family concurs. :-(  

I think it is because of the lingering effects of the thyroid cancer treatment complications plus the side-effects of the pacmen, but also because I am dreading my trip to Toronto next week.  

Another couple of days away from home, for ipi treatment #6 and CT scan #5, plus get results from Nuclear Med body scan with Endocrinologist.  It will be a busy couple of days, and I am being a whiny baby stomping my feet - I don't want to do it!  I am sick of doing this stuff, I want my "old normal" back!  I am tired of my life being on the line.

Anyway... 

I thought I would share some of my online findings with you, if you wish to verify any of my information, or if you just wish to get someone else's perspective on what I'm talking about:

A Melanoma Journey - experience remarkably similar to mine (Canadian)

Hotel Melanoma - cool expression of experiences through song lyrics - I wanna be sedated too! (U.S.) This blog caught my attention when I read the description in the header: "The "Hotel Melanoma" moniker is a metaphor for living with my particular brand of cancer. Except for those lucky few of us deemed "cured", all we cancer survivors are guests of one of the many, many branded hotels in the "Hotel Carcinoma" chain. We can check out any time we like, but we can never leave. Meanwhile, let's be livin' it up; and please support cancer education, prevention, and treatment research."  

Huffington Post Generation WHY - lots of funny and oh-so-true blogs such as this one: Cancer Has Made Me Socially Awkward

Dear Melanoma - Australian, perspective on such things as Life After Cancer 

Very true and real issues faced by stage 3/4 melanoma patients!

And, the actual article Emma from Dear Melanoma discusses: Lost in Transition After Cancer

Article: Melanoma Caught Me by Surprise - Don't Let it Happen to You, by Summer Sanders (Shared on FB by Save Your Skin Foundation)

Thank you to all of you who are willing to share your experiences online, and Thank you to all of you who support and encourage us in our journeys, online and on the line.