Thursday, December 18, 2014

Back into the waiting pool

Another week post-surgery, and a busy week it has been!  On Tuesday Julie took me back to Sunnybrook, sans snow storm this time. 

In the morning I saw my first surgeon, the Surgical Oncologist who removed the melanoma-infected lymph nodes from my right abdomen and groin/leg in May.  She also keeps an eye on my chart and quarterly CT scan results, knowing that I am under the care of my Medical Oncologist in the meantime.  Her physical exam reported improvement in the tissue recovery in the surgical area so she was pleased, and she booked a follow up appointment for one year out.  

I will be monitored for the rest of my life in this way, by each doctor for different parts.  I am amassing a collection of specialists as I go along this journey!

After a lengthy wait in the afternoon, I saw my Head & Neck Surgical Oncologist to check out my thyroidectomy incision and surgical report. The pathology report was hot off the press too so....

Good news is I got the staples out of my incision! My neck is feeling better already, it is to the point where I can put some vitamin E on it and start healing the skin. I am willing to be seen in public LOL.  I got a new cream from my family physician, which is helping to fix the itch that was driving me crazy.  I can turn my head now too, have almost full range of motion and the swelling has gone down quite a bit. Not perfect, but a lot better than two weeks ago at this time!

Bad news is, there is good news and bad news: they removed 37 lymph nodes from my neck in total, and ten of them were positive for thyroid cancer.  Good news is it was thyroid cancer, not melanoma. I was pretty sure that wasn't the case, based on the biopsy I had already had which gave the diagnosis of papillary thyroid cancer.  But it is good to have confirmed that the melanoma hasn't spread to my neck.

Unfortunately though, bad news is that given the high rate of spread of the thyroid cancer, I have to have radioactive iodine treatment to follow-up the surgery.  All of the lymph nodes are now gone from my neck (interesting, to say the least, and I think I will be learning more about that in the near future?), but there is risk of cancer "crumbs" remaining on the table, in the form of cancer cells, thyroid cells, and/or cancerous thyroid cells, as I understand it?  So the standard of care in this case is iodine radiation, to get rid of those cells once and for all. Check out this link if you wish?

I don't know yet where this will happen, I assume Sunnybrook but may be able to have it in Owen Sound? It is a drink or a pill that I will have to drink, a radioactive substance that attracts any remaining thyroid cancer cells in my body and destroys them - when explaining this to the girls I used the "raid" commercial as an analogy: the thyroid cells like the iodine, rush to eat it then OOPS it was poisoined bait! Raaaaaiiiid!!  And poof - gone.  :-)  Over the course of a few weeks my body would clear itself of the treatment, and thyroid cancer hopefully becomes a thing of my past.  They do a scan to be sure they got it all and sometimes have to administer a second dose of treatment, but overall it is a conclusive finding after the end of it. 

Couple of minor complications about this:

1. I have to be in isolation to drink this radioactive iodine, and I have to remain in isolation for a period of approximately a month afterward?  You drink it in the hospital then stay in isolation for 2-3 days? so as not to expose anyone else, like a walking xray or better yet.. a walking Chernobyl accident. :-/  Then home I believe, but have to stay separate from my family, no chance of sharing body cells or fluids - saliva, sweat, sneezes, coughs, hand-touching, skin cells. No sharing dishes, laundry, bathroom, towels etc, no sleeping beside, or hugging anyone. :-(  Especially the kids.

2. There is this little thing called a clinical trial in which I am participating... oh yeeaaahhh... right - I have melanoma too. Shit I almost forgot!?!  *SIGH*  I am currently waiting for a call from my Medical Oncologist to see if the idodine radiation treatment is permitted under the conditions of my clinical trial for ipilimumab

Yes, please feel free to re-read that and pause to try to understand... I have been doing that since Tuesday afternoon!

After all of this fuss and education and decision-making and stress and waiting and treatments for melanoma, and with the snap of some fingers somewhere just like that!  I may have to opt out of my trial for melanoma treatment.  

I find this a bit bewildering after being told that the thyroid cancer is less a worry than the melanoma, but now based on the pathology of my surgery it has flipped and I am being told that the thyroid cancer is more of a threat at this point and I need to pursue the radioactive iodine regardless of ipilimumab.

Soooooo... Tuesday afternoon my head/neck surgeon consulted my medical oncologist and thankfully she was in the building and came down to see me at the same time.  I do appreciate that so much because this is quite a unique and confusing situation!  

She explained that she is very happy I successfully received the first four of eight ipi (Pacmen) treatments, and she recommends that if I have to opt out of the trial then go for it as there are not enough statistics to prove the remaining treatments three months apart are effective enough against melanoma to risk not treating the thyroid situation.  She literally said most people don't make it that far anyway so they can't conclusively say it works.  UM, seriously!? I knew she meant stage four patients, from which I am a slim margin away, so I tried to not take offense.  I'm sure she didn't realize what she was saying right to my face?! 

I swear, it's gonna be a heart attack that gets me, long before this frigging cancer.

So at this point I have a whole bunch of questions and I am waiting for a few phone calls.  I will list them here so that you know where I'm at, and please feel free to comment if you can think of other questions to ask that I have not yet answered or can add to my list to ask. I appreciate your help and support, and I will update with a blog post once I know more information:

- When will the iodine radiation treatment be?  4-6 weeks post-surgery, so mid-to-end January? Likely at Sunnybrook, think I would prefer that even though it is farther from home, it keeps me in the forefront of my medical team's attention.

- Will they allow me to stay in the trial even if I have the radioactive iodine treatment?  Don't know... my family physician suggests that there should not be any kind of conflict between the two treatments, but we suspect perhaps the trial people won't want to administer ipi in case I have some sort of strange complication and they are responsible?  Maybe my days as their favourite guinea pig are over?  :-(

- My next melanoma/ipilimumab treatment is supposed to be Jan 19th, what will happen to that?  If I opt out of the trial, there will be no treatment, and no option for one in future (unless as a stage four patient). As for further melanoma treatment?  I don't know?
- What will happen with my follow up care if I opt-out of the trial? One of the reasons I opted IN was for the CT scans every three months.  So far everything else wrong with me has been found by CT scan, that is my "litmus test" and there are several things they are watching, including the unclassified lesions on my liver. Family doc assured me that I will still have the CT follow ups, just maybe every six months instead of three, I am not too cool with that.  Maybe once I have a couple - or even ONE - in a row with nothing negative on it I will be comfortable waiting six months between scans, but until then?  I think not. Scan me please!

- I am waiting for an appointment with an Endocrinologist. What is an Endocrinologist?  Not sure, think that is the specialist that looks after hormones... thyroid specifically, pituitary, all the stuff that makes the body go round. I think he will be the one to watch my blood calcium levels and thyroid hormone function etc, but he may also be the one in charge of the radiation treatment?  Not sure, will keep you posted. That will be at Sunnybrook too. 

Ok please let me know if you think of anything else, my head is nearing chemo-brain capacity!

Several people have asked... holy how are you dealing with all of this?  My answer is: I don't really know.  I am upset and confused, but it is not the first time in the last eight months that I have been hit with a brick wall to overcome.  The girls and I are hugging each other tight and taking one day at a time, as we always do.

And yes Christmas is coming but that doesn't really change anything... we are having fun despite everything - we can't not, what with all of the love and support we are receiving. Scott will be home hopefully Monday too, and then he and Paige will be here for the holidays too and we can all hang out. We have some fun plans to look forward to!  And I will be hugging everybody lots, now that staph infection is gone and before I become a contagious glow-worm. ;-)

All of the texts, emails, calls, food gifts/deliveries, treats, flowers, gifts, surprises, rides to stuff, and other helpful things our family friends and neighbours are doing are very much pulling us through.  We can't thank you enough... but we will keep trying!  Thank you.  xoxo Will keep you posted!

Hoping you are having a happy and healthy pre-Christmas holiday week - talk to you soon.


  1. Nat, I am diligently reading your blog posts, mouth agape. And I find myself continually amazed by your outlook and strength. But, I knew that's who you were a long time ago. I also find myself wishing...wishing for your health, that I wasn't so far away, that time would slow down a little and reminiscing to your visit to London when our kids were just babes really. You are as inspiring as ever and don't you forget it. I wish your family all the love and cuddles this season should bring. XOXO

    1. Indeed Lori! Remember them on the beach that day here too? teehee so cute.. and now they're all so big and wowww... :-) Thanks for your kind words.. and same to you and yours, wishing you the best this holiday season and always! Let's aim for a visit in 2015 xoxoxo