Drink Please!

I have amassed a collection of my favourite beverages to take for my three-day Sunnybrook stay.  They will provide iodine-free hospital-food meals of course, but the instructions say I need to bring plenty of my own beverages with me.  

The more I drink the faster the radioactive bad stuff will be flushed from my system, so after I take the iodine capsule and whatever waiting period it is, I have to just relax and drink.  What a coincidence - that's one of my favourite things to do!

Think I have enough? 

• Bottled water (nurse at Toronto East General already confessed to me that the hospitals just use their Toronto tap water *gasp*) (LOL Toronto friends - sorry!)  ;-)
• No-added-sugar green smoothies, containing spirulina and chlorophyll to help absorb toxins (I just have to watch that Bolthouse one has Nova Scotia dulse in it and that is a "sea food," but I will be able to have it on the Wednesday)
• Meredith's ginger syrup mmmmmmm! I can have a straight shot or mix it in my water or tea - if you are not familiar with Meredith's beautiful product, made in Meaford, please check it out
• Pellegrino, my favourite (Italian) sparkling water
• Kombucha tea, detoxifying and energizing, cancer-fighting
• ginger-lemongrass sparkling water, yes I'm taking my big suitcase with an ice pack!

and last but certainly not least...

• a couple minis of cinnamon tequila :-)
• and Prosecco, my favourite (Italian) bubbly!! What would three days in a peaceful silence retreat be without a wee cocktail?  I even found a baby Prosecco - I imagine they wouldn't be too impressed if I brought a magnum LOL 

Lymphedema

Today is Lymphedema D-Day, as celebrated by the National Lymphedema Network (U.S.).  Funny, because I was planning to write a post today about my Lymphedema, the thing I have mentioned a few times but have not yet conquered on my to-do list.  It is the most debilitating residual effect from my two surgeries for cancer. 

I often mention my puffy achy right leg: that is from the removal of lymph nodes in my right groin/lower abdomen, closest to the primary site of my now infamous mole excision (hip), in May 2014 at Sunnybrook.  I was on mandatory bedrest for eight weeks following that surgery, mainly for the attempt at prevention of lymphedema. My right leg had to be elevated 80% of the time, 24/7.  Last spring I watched every single leaf languidly emerge on the lovely large maple tree outside my window. Every. Single. Leaf.

I also have a bit of post-thyroidectomy lymphedema in the left side of my neck and the area right under my chin.  Still just three months post-surgery on that one so hoping it will clear up with therapy.  

I have made contact with a certified lymphedema massage specialist/therapist in Owen Sound upon the recommendation of the local lymphedema brochure, but I have had to postpone my appointment with her until after thyroid cancer cells are considered all cleaned up.  She has read my CT and surgery reports, and she is prepared to help treat my leg and get some of the excess puff out of it, and then she will fit me with a custom-made compression stocking to wear on that leg to prevent further swelling in future.  

We still do have to wait though, as I mentioned there are still thyroid cancer cells running around, aside from the melanoma, so we don't want to push them in any direction they are not supposed to go.  The lymph system is connected throughout the entire body, so we have to be careful with it. 

"Lymphedema is the abnormal buildup of fluid in soft tissue due to a blockage in the lymphatic system. The lymphatic system helps fight infection and other diseases by carrying lymph, a colorless fluid containing white blood cells, throughout the body using a network of thin tubes called vessels. Small glands called lymph nodes filter bacteria and other harmful substances out of this fluid. However, when the lymph nodes are removed or damaged, lymphatic fluid collects in the surrounding tissues, causing them to swell.

Most often, lymphedema affects the arms and legs, particularly in people who have received treatment for breast cancer or cancers that affect the urinary tract, bladder, kidneys, abdominal areas. However, lymphedema can also occur in other parts of the body, including the head and neck. For people receiving cancer treatment to the head and neck region, the neck is the most common site of lymphedema, but it may also develop below the chin, in the face, and, less often, inside the mouth. 

Lymphedema may develop immediately after surgery or radiation therapy, or it may occur months or even years after cancer treatment has ended."  (Source)

People with lymphedema in an arm or leg may experience the following symptoms:

•     Swelling that begins in the arm or leg matching the quarter of the body treated for cancer

•     "Heavy" feeling in the arm or leg

•     Weakness or decreased flexibility

•     Rings, watches, or clothes that become too tight

•     Discomfort or pain, although often there is no pain

•     Tight, shiny, warm, or red skin

•     Skin that does not indent at all when pressed, or hardened skin

•     Thicker skin (hyperkeratosis)

The first five definitely apply to me (and my yoga pants) - they are not deal-breaking side-effects that I can't live with, they are simply a nagging achy constant reminder of my losses.  

My leg is achy especially when sitting, so I tend to lie down or stretch out or recline whenever possible, even standing is better than sitting, though that makes it swell.  Though I sit all the time for driving or visiting; it's liveable, I'm just bringing awareness to my situation.  Uneven terrain is difficult for me too, ice/snow, bumpy lawn, or an unexpected area rug on a flat floor, stairs, I'm not so sure-footed as I was before. 

Many many people have it worse than I do; I was lucky, given what my melanoma surgeon told me about it!  70% of patients who have the same surgery I had, develop lymphedema in their leg.  It sucks. But it is an acceptable trade-off for cancer in lymph nodes.  

I have lost an uncomfortable amount of flexibility in my right hip/leg, and in my neck as well.  My mobility is definitely affected.  Other than fatigue, that is the primary physical hurdle affecting my return to work.  My job is physically demanding (as well as requiring a clearer mentality than that of chemo-brain!):  I have a lot of work to do if I am ever to get back in the condition I was as Front End Manager at Bill's valu-mart. 

I expect to begin serious work on my lymphedema in April, when I am back on my thyroid medication, get metabolism going again, spring weather I can begin taking longer walks perhaps? (Excercise is a problem, my leg puffs when I'm on it too much, but at the same time it requires work - it's a fine line, and every day is different, I can't anticipate the severity)  Massage therapy and eventually the stocking, and yoga therapy is in my plan as well. 

In any case, lymphedema is common and treatable.  It is estimated that in Ontario alone, over 63,000 children and adults live with lymphedema. 

I will keep you posted on how my lymphedema goes.  In the meantime, please don't laugh when I limp, gimp, straggle, or creak when I first stand up after sitting for a visit.  LOL  Yes I feel like I'm old enough to match my grey hair, but I don't really want to show it.  ;-)

Low Iodine Diet

Of all the fad diets I have investigated over the years, this is not one I have previously experienced.  On Monday I will begin this diet for two weeks to prepare for my radioactive iodine treatment on March 23, 2015.  After the hospital stay in isolation, when I come home on the Wednesday night, I can resume my normal routine and diet.  

A low iodine diet (LID) means food and drinks that contain as little iodine as possible. Iodine is a mineral found naturally in many foods, especially those from the sea.  In Canada, iodine is added to table salt, this is called iodized salt.  We use non-iodized sea salt here at home, but I still have to be careful of the naturally occurring iodine in the salt.

In a LID, the total amount of iodine permitted per day is less than 50 micrograms.  For example, the amount equal to the amount found in less than 1/8 teaspoon of iodized table salt. 

I adore salt.  It is amazing that I have low blood pressure, given the amount of salt I consume.  True story, it is my dietary weakness.  

Is a LID the same as a low sodium diet?  No. Salt is also called sodium chloride... I will need to avoid iodized salt and sea salt because they contain iodine, not sodium. 

A low iodine diet starves the body of iodine. Any remaining thyroid cells I have will crave iodine more than anything else.  When the radioactive iodine is given (I will simply swallow one capsule), the thyroid cells will take up the radiated iodine, which destroys thyroid cells, including those that are cancerous.  

Iodine comes from many food sources: 

• in dairy products, because iodine occurs naturally in milk and because the solutions used to clean cows and milking equipment may contain iodine
• naturally in many foods such as fish and sea foods
• in foods coloured with red food dye (erythrosine/red dye #3)

For two weeks I will have to avoid:

• milk and milk products, cheese, yogurt, cream, butter 
• meat and alternatives - any meat or poultry prepared with salt or brine (thankfully I have a Butcher friend who can help me out if I get stuck with a meat craving? Plus I have some gift beef from my Richardson family which is processed in a small local place, clean, and my Hunter friend gave me some venison- yum) Thanks guys! 
• soy and soy products
• egg yolks (eeek, this one I will miss, I do eat eggs every day)
• breads, cereals, or crackers made with salt, egg yolks, soya or dairy products. HA good luck finding that around here.  I see a lot of green smoothies happening in the next two weeks
• red-coloured ready-to-eat cereals, soft drinks, fruit drinks, maraschino cherries (ok no problem on these ones)
• mayonnaise, salad dressings, peanut butter, jar salsa, pickles, olives
• all restaurant and take-out food, including black coffee
• milk chocolate (WHAT?!?)
• medications or vitamins that include salt or milk
• skin creams or antiseptics that contain iodine, such as betadine

Fun times.... Okay now to prepare myself for what I CAN eat for this time... this weekend I will be getting some stuff ready, I already got some of my favourite dried legumes and I am handy at making those so I will soak and cook up my kidney beans, romano beans, chick peas. Mmmm I love fresh-cooked chick peas with just Tabasco sauce and a bit of olive oil!  Oh wait, Tabasco likely has a bit of salt?  Well a couple drops will not make up that 1/8 teaspoon. 

I will be permitted to consume:

• coffee/tea without milk or cream (though I usually use almond milk at home anyway, it contains salt so I will be careful)
• fruit smoothies made without dairy or soy 
• salads, raw veggies, fresh fruit 
• honey, maple syrup, white or brown sugar
• unsalted dairy-free margarine (NOT for me!! blech!)
• dairy-free sorbet
• olive oil, balsamic, home-made dressing (my inner-Italian is great with those)
• egg whites
• unsalted nuts
• rice, oatmeal, couscous
• lentils, beans, legumes
• homemade beef stew
• unsalted rice cakes or popcorn? (I doubt I'll get that desperate)
• beer, wine, and spirits (YES - it actually says that on the brochure LOL)

I did spend a couple years as a dairy-free vegetarian, so these LID restrictions are not entirely foreign to me.  On the other hand though, the cranky-grumpy that comes with not being able to have milk chocolate or a bagel with cream cheese is not foreign to me either.

In addition, on Monday I have to stop taking all thyroid hormone replacement medication, in order to make my body hypothyroid.  Hormones released by the thyroid gland (in my case hormones replaced by meds) travel through the bloodstream and affect nearly every part of the body, from the heart and brain, to the muscles and skin. The thyroid controls how the body's cells use energy from food, a process called metabolism. Among other things, metabolism affects body temperature, heartbeat, and how well you burn calories. Without enough thyroid hormone, body processes slow down. That means your body makes less energy, and your metabolism becomes sluggish.  

Sluggish-metabolism-Natalie + no-salt-Natalie = a-LOT-of-time-in-the-basement-Natalie! 

By the time I get to the end of the two weeks, we will all be ready for me to spend three days in isolation at the hospital, I'm sure!  

I feel prepared to go on this LID, I will embrace the preparation for the radioactive iodine, it is my last stab at thyroid cancer.  My physicians tell me that after this treatment we "should" be safe to consider thyroid cancer behind us, so hey, two weeks is a breeze compared to the thyroidectomy and post-surgery recovery/trauma/scar.  Couple weeks of no salt but lots of wine, by myself, in my cozy basement? Gee thanks thyroid cancer!  Kinda fitting in with my preferred way to spend time anyway! teehee  ;-)  

 (Source: brochure provided by endocrinologist, and www.thyroidcancercanada.org)

Webinar - Melanoma - Save Your Skin Foundation

On Wednesday I had the pleasure of speaking with the founder of www.saveyourskin.ca: Kathy, a melanoma survivor since 2003 who is working hard with U.S. and Canadian Oncologists as well as the Canadian government as a patient advocate, to increase awareness of rapidly evolving melanoma treatments.  She is a positive role model and an ambitious fighter who seems very on top of her game, throwing around terms that I am just learning. She encouraged me to do my homework.  

I have spent part of today watching the webinars on her website, and I am astounded.  I love hearing the oncologist speak about treatments for melanoma, past therapies and current therapies - including the one I am currently taking (ipilimumab) - as well as research ongoing into new(to Canada) treatments such as PD-1 Inhibitors.

The first webinar is about 37 minutes long - go grab a coffee and check it out if you are interested in hearing Dr. Infante (Nashville, TN) discuss in detail the current research and findings as of September 2013.  It is intensely medical-speak, so if you don't want to I will not be offended, just want to share with anyone who wishes to learn more about my pacmen and how they work and what they might do for me in the future. 

Around the 17-minute mark of this slide show he begins to speak about ipilimumab or "Ipi" which explains some things I did not know before, and it gives me a different perspective with which to ask my oncologist questions.  

If you do watch this, just keep in mind that in genetic testing to date, I am BRAF negative, and NRAS negative.

What I take from this talk, is that even with being negative for those genetic mutations, though I may be ineligible for some of the targeted therapy they discuss, there is still plenty of hope and possibility that I could receive benefit from the therapies being developed, including the ones meant for BRAF positive.  Every patient case is unique.  They seem to be approaching each one with an open mind, as I feel my medical oncologist at Sunnybrook does with me.  

If you do not have stomach for this kind of stuff, or if you think it will worry you, please just close my blog now and ignore this post.  Thank you!  :-)

 
The Evolution of Combination Strategies in the Treatment of Melanoma

Strategies in Immunotherapy - Webinar - Save Your Skin

This webinar, also found on www.saveyourskin.ca, published on June 13, 2013, presented by Jedd Wolchok, MD, PhD, delves more into the history of immunotherapy and the research into anti-cancer therapy based on the human immune system.  (see also)

It is interesting, discusses PD-1 Blockers and melanoma in a way that I can understand, though I will go back to it another time to listen again.  

I also need to pursue with my medical oncologist more information about my genetics, ie. am I MEK..? BRAF and NRAS are known, how about the others? 

One very cool question answered near the end of this webinar is about the possible correlation between ipilimumab treatment and side-effects?  The oncologist answering said that yes they do have reason to believe that the side-effects ie. skin rash and intestinal disturbance may mean that the therapy is indeed working.  He said there is no clear definitive answer, but likelihood is that yes, if you have the rash and diarrhea then it is working -  that is very good news for me.  

He also thanked, several times, patients and their families for participating in clinical trials, for they are what allow advances in medicine to be made. 

Otherwise it is pretty dry, medical speak.  If you don't like that then don't think I'm forcing you to watch a 56-minute video.  :-)   I'm just listening while developing my salt-free romano bean hummus recipe.

 

Hello March!

For someone who resolved to sleep away the month of February, I am greeting March with a look back upon what turned out to be a fairly productive time for myself and my family.  I still have several outstanding items on my to-do list, but I also have some unexpected positives in the "complete" column.

I did join two support groups in February, one at Gilda's Club in Barrie, and one through my new social worker at RVH, also in Barrie.  The first one was lovely, I met some interesting people with stunning experiences. Sadly, I have had to put that one on the shelf for a bit.  Two drives to Barrie per week was a bit more than I could handle at this point, physically/personally, and in winter driving conditions.  

On Thursdays however, I have continued to go to the writing/support group, and it has been fantastic.  I have met some lovely new friends and I am getting a lot out of the exercises we discuss, and I am enjoying writing more than ever.
                                                                                              

Journaling, creative writing, and poetry have always been a therapeutic part of my life, and I am really embracing the opportunity I have now to simply bond with my words, and let them go.  It takes time, but hey... I happen to have some lying around. 

I am feeling a bit better, emotionally-speaking, seem to be coming out of the hateful month of February to an exciting list of To-Do's in March.  I think I may be starting to embrace my situation a bit more and settle in to the fact that I can actually do what I want right now, and feel what I need to feel, relatively speaking. 

My tolerance for bullshit has drastically decreased, and I notice myself getting directly to the point with people more than I ever have in my life.  With the kids and Scott (which can sometimes be bumpy for all of us?), but also with friends and family, with doctors, and with myself.  

I am feeling (and talking/writing) my way through my "new normal," and I am learning that it is not just me who has to do that.  I have been putting a lot of pressure on myself  to still try to "fit in" with my old patterns, but I am learning that I just cannot do that anymore, I am developing. I am changing and I am a different person than I was a year ago. I suppose we all do that as we grow and age, but I have a feeling that a cancer diagnosis accelerates it in a unique way.  

I am taking every opportunity to think outside the box and work it out, especially with Claire and Cassandra... we ALL have to adjust to OUR new normal. 

Updates from around here:

• On Monday the girls and I went for the trial week 30 bloodwork and consultation with my medical oncologist at Sunnybrook, it was a great meeting and we reviewed upcoming treatment schedule and at this point plan to continue with the maintenance phase of my melanoma treatment with ipilimumab, next treatment April 20, 2015.   
• We also discussed my much-anticipated CT scan results from my January scan.  I guess it is official - I have had my first scan with no bad news on it!  If I sound like I am questioning this, it is because I am.  My doctors say it is natural for me to feel like I am waiting for the other shoe to drop, but in the meantime I should frame the CT reports - they are Unremarkable  :-)   
• Oncologist concurs with family physician that the lymph nodes showing swelling in my head/neck are naturally doing so in part due to post-surgical changes still healing, and in part because there are only a few nodes left and they are now doing all of the workload they used to share with their 37 now-departed neighbours
• As for spine, C5 disc that showed a possible issue on October scan appears to be a benign bone lesion? and we will continue to closely monitor by CT for now, no bone scan required at this time
• Abdominal scan is the best one this round, despite being my most feared, as it contains the post-op site primary for melanoma, plus my beloved liver which is closest organ to the primary site I am urging my inner pacmen to protect
• Overall a good meeting, we discussed my thyroid bloodwork and meds, things are stable but will greatly improve after my radioactive-iodine treatment in March.  We all expect to have thyroid cancer behind us by April, then focus on the melanoma fight rah rah sis boom bah

And other news:

• my daughters wrote and delivered their annual public-speaking projects, in French: speeches.  Cass did hers on "Art," with an introspective on her favourite forms of art plus a well-worded observation of how Art is all around us and is utilized in every day life.   Claire spoke eloquently about the Sun.  Yes, the SUN :-)  She researched some interesting facts about it and how it affects the human body as well as the world around us, including photosynthesis and the production of vitamin D. She touched on skin cancer, but was not specific re: me, though she blew the teachers away in her post-speech question and answer period, also en francais.  Both girls did very well!  And after a tie with another student, Claire landed top spot in her grade and the opportunity to deliver her speech at the Board level in the Canadian Parents for French public-speaking contest, Concours!  She and Cassie both did this in grade five, so Claire was excited and driven to try again.  She will compete on the evening of March 25, 2015 in Chesley, more to come on this topic for sure!!
• I have connected with some opportunities to explore my interests in writing and editing - I am excited to report that I have been asked to help edit some stories/testimonials sent in to the Gilda's Club new website/blog called #iamnotcancer  at www.iamnotcancer.ca   This is volunteer work I can do from the comfort of my laptop, at the convenience of my health and family schedule.  More to come on this topic as well!  
• I have ordered myself a few business cards, just compelled to do so one morning last week... perhaps prompted by the chronic writers cramp I've gotten from scrawling down my blog address when new acquaintances ask for it? -kind of an exciting problem to have. I appreciate the support of my blog and I am enjoying sharing my experiences and receiving feedback in return.   
                                                                            

I agree with Gilda's Club that no one should have to face cancer alone, and I am still revving up for a melanoma awareness effort of some sort..thanks for sticking with me while I mull it over.

• I have also contacted the Save Your Skin Foundation folks in BC - will keep you posted on how that goes

• on Monday March 9, 2015, I will stop taking my thyroid hormone replacement medication and begin my two-week low-iodine diet (salt-free, dairy-free, meat-free.. flavour-free??) in preparation for my iodine radiation treatment on Monday March 23, 2015  Woohoo - let the whining begin.

Otherwise, plugging along one day at a time, but buoyed by the little projects and distractions that are on my horizon.  March should zoom by: March break staycation plans with the girls, St. Patricks Day - a fun reminder of a fourth anniversary-ish for Scott and I :-D , writing group meetings and homework, upcoming three-day Sunnybrook stay, lots to write about! 

Enjoy the sunny day, thank you for your continuing support.  xo