Melanoma Blog(s) Updates - a Quick Check-in

Every year around this time I get a bit twitchy about my upcoming cancer-versary, it's soon annual CT scan time, and so I need to stop and smell the roses. Many amazing things have happened in my life in the last year, it's really been non-stop around here - all good stuff! And never a dull moment. Mike and I travelled around BC a bunch, including a raucous Camaro trip to the Kooteneys, and a stunning camping trip to Bella Coola. 

Also news: Claire and Cass moved here to Prince George (haha right - I never thought I'd say those words!) and are settling in beautifully. I of course am thrilled that we are back to living close to eachother!!! They are loving PG and immersing themselves in their new city.  We're slowly but surely getting their Toronto-blood-pressures down, and the imminent spring weather is going to greatly help that when we can get back out there for camping, exploring, and adventuring. 

In the meantime... work. Mike and I both have been burning the candle at both ends the past couple of seasons. Mike worked BC Elections as he loves to do, and then took on a side gig here in town to help him pass the winter (aka non-Camaro) season. I've still been working with Community Futures but also was part of a Scientific Planning Committee (my first one!) to bring a two-day accredited for Physicians hybrid conference to Prince George for Lymphedema Education. It was a large undertaking and I am honoured to have been able to support this event with my conference planning skills. Not long after that, I was part of the team who brought the B2B Expo to the Prince George business community - another large project I am proud to have been part of. These recent refreshers have reminded me how much I love to plan and facilitate corporate events, and how my professional efforts need to swing more in that direction. 

Sprinkled in between all of that was also a little bit of time with Save Your Skin Foundation! In February, SYSF invited me to host their Fireside Chat and speak on the topic of "Connecting to Your New Normal." It did stretch my cancer patient muscles a bit - I dusted off some decade-old feelings about this disease and shared my story and perspectives on life after cancer, hopefully giving even just one person a glimmer of hope in their skin cancer journey. 

SYSF has now posted the recording of my talk, and a short blog re-capping my melanoma and Save Your Skin story. You can check these out here and here: 

SYSF February 2025 Fireside Chat: "Connecting to Your New Normal" 

with host Natalie Allan, Cancer Survivor & Motivational Speaker

Thank you Kathy and Save Your Skin Foundation, for being there for me, and for Mike, our families, and all of the patients and caregivers your life-saving work supports in the cancer community. 🙌

I'm grateful to have some re-connects with my melanoma friends and family, and these opportunities help me to pause and reflect, and celebrate almost 11 years since I was first diagnosed, and I am HERE. 🙏 xoxoxo

🧡

One more quick note before I dash off to the next thing - just this very morning I received an email from Feedspot notifying me that my blog was again on the Top Melanoma Blogs list! Surprising as I haven't posted as much since last receiving this honour in 2017, but a very welcome nod and neat timing as I was just preparing to post about the SYSF event. Thank you @Feedspot - I appreciate #29 and will happily share your new badge. Great to see so many of my old friends and melahomies on this list as well! 🥰

March is Lymphedema Awareness Month

Over the years I have written quite a bit about my experience with lymphedema - secondary lymphedema in my right thigh, from surgery for melanoma skin cancer. Lymphedema (lim-fa-DEE-ma): lymphedema is a lifelong condition caused by a buildup of lymph fluid. This happens when the lymphatic system is either faulty or damaged and cannot function as normal. It leads to chronic swelling in the tissues where the lymph flow is blocked.*  I've dabbled in pursuing treatment for this but will admit I have not yet established ongoing management of it. Still on my to-do list. Mike also has lymphedema, from the same surgical procedure for melanoma, but it settled more in his foot. 

In any case, having bolstered a bunch of melanoma-related patient support and education initiatives with Save Your Skin Foundation and on my own over the years, I am now adding a lane, and lending a hand with lymphedema patient support. Recently I have joined a team in Prince George who are planning a Lymphedema Education Conference later this year for Physicians and allied HCPs in the Northern Health region of BC. I am happy to be working with an esteemed local Physiotherapist who is leading the initiative; I will support with my event planning and tech experience. 

Not only am I learning more about lymphedema, and the needs of patients, but through this project I am learning more about the health care system in our region, and the access to resources that Physicians may or may not have. 

Our group is excited to be planning this informative event, which will consist of a full day for Physicians, including a lymphedema care doctor guest speaker from Ontario, and then a half-day for allied health care providers on lymphedema care and bandaging, etc. While planning all of this we are learning about the process of hosting - and funding - an accredited conference for Physicians. It's a big undertaking! But a necessary one, as continuing lymphedema education fights for attention just as many other medical infirmities have to. 

View this video from Shirley Bond, MLA, Prince George-Valemount speaking about World Lymphedema Day and the local work and recent initiatives underway in our area:

I'll update with more information when I can, but in the meantime, I'll end with a shout-out to the 1 million Canadians impacted by lymphedema and bid them a healthy Lymphedema Awareness Day. 

For more information, please check out the Canadian Lymphedema Framework, and/or the lymphedema association in your province:

Canadian Lymphedema Framework

A Year to Review

As I prepare to spend the next year writing a book and pursuing a career as a freelancer and advocate in the oncology space, I have been reviewing the multitude of resources collected in my cancer travels over the last nine-plus years. I am inspired to share the knowledge I have gained through my work, but also to re-visit it with the additional perspective I have developed since first being diagnosed with advanced cancer. 

Some resources I'll mention in the coming months you will have heard me touch on before, some might be familiar only to those who follow Save Your Skin Foundation (where I wrote about them but didn't share on my personal blog), and others will be completely new to all of us. I will be expanding on my experiences with these items, and in some cases, I expect my extended thoughts on the topic will reveal some new context. 

January is as great a time as any to kick off a new plan - I'll start with a plug for those who enjoy setting new years resolutions. An easy one for the year is to perform a monthly skin self-exam to stay on top of any changing skin spots, moles, or conditions. Our skin is our body's largest organ, and we need to check it to protect it. Set a reminder in your calendar, google, or Alexa, and/or align your skin check with the full moon every month - easy peasy!  (Just saying... if I hadn't neglected my weird mole all those years ago, I wouldn't now be sitting here talking about metastatic cancer.)

Click here to learn how to do a skin check

Also in January, it is Children Impacted by a Parent’s Cancer Month (CIBAPC), in the United States.

I have set a plan for my blogging to align with a calendar of cancer awareness days for 2024. As you know, through my work I have inadvertently become an "unofficial expert" on melanoma and non-melanoma skin cancers, as well as ocular (or uveal) melanoma. Also having had a simultaneous diagnosis of thyroid cancer, and becoming extensively familiar with the treatments for all of these, as well as related conditions and topics such as lymphedema, gene testing, and treatment side effects, I will share news and insights on each of the ones I feel equipped to speak about.

You may have already noticed I added an image with a link in my blog sidebar to the right showing the I Had Cancer calendar for 2024. This calendar is the most comprehensive of its kind, that I've seen. I Had Cancer is an online patient support community I have been a part of for many years, wrote a blog for them once upon a time too. I'm inspired to share their excellent resources and to be able to do so on a wider array of cancer indications and related topics. 

My journey with melanoma skin cancer has many similarities to that of folks with other cancers, so I will speak to that throughout the year. 

Also, I realize that you know people other than myself who have cancer - it isn't all about me.... so you may find some interesting information and additional cancer resources such as awareness months/days and ribbon colours, and support resources for a wider community.

This calendar is free to download so if you'd like a copy you can click here to get it. I'll keep it in the sidebar this year and refer to it in upcoming posts, but also please feel free to get it and share with your family and friends. 

Why do I feel cancer or health-related awareness activities are important? For the same reason I still write about my journey almost ten years after it began: to be part of a community of support. When I was first diagnosed, I felt very isolated, filled with fear, and like no one understood what I was going through. When I started to research melanoma and found people who had survived it, I felt hopeful. They helped me, and now I can help others.

Everyone everywhere who is diagnosed with any life-changing disease or condition goes through a unique and often terrible range of emotions as they learn about their condition, their "new normal" - or wonder if there will ever be anything "normal" again. Cancer, diabetes, MS, heart disease, lung disease, Crohn's, lupus, hepatitis - too many to list. We all have something. And, pack animals that we are, we often find comfort in engaging with others who are in the same community. It is part of coping, learning, sharing, and giving back.  

Another great resource for patients and caregivers includes the National Comprehensive Cancer Network® (NCCN®) Guidelines on melanoma and non-melanoma skin cancers, and many other indications, as well as supportive topics such as immunotherapy or treatment side effects, mental wellness, and survivorship.

I wish I had had NCCN® guides for melanoma and thyroid cancers back in 2014-2015, though these have been newly developed in recent years. Through my work at SYSF I got to research and endorse many of these guides, and provide patient quotes from our community, and somehow my little face is even on the cover of the 2021 melanoma guide. That is how much I love these guides and recommend them to patients and caregivers. 

(Clicking this image will take you to the most current 

Melanoma Patient Guide from NCCN, updated in 2023)

Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and access apply), as I have personally confirmed with members of the SYSF Medical Advisory Board. Canadian doctors do refer to the NCCN® clinical guidelines, and they do support the distribution of NCCN® patient guidelines to Canadian patients.

Plus - the other day when I was researching NCCN® updates I found they have published a new guide on thyroid cancer in late 2022! This is exciting, as I have never really understood the details of my thyroid cancer diagnosis. I knew I had papillary thyroid cancer, and that they were happy the tumour wasn't melanoma, so I had a complete thyroidectomy and radioactive iodine treatment. That's kind of it. Until now - I just finished reading this and I'm clearer now on more of my details. Check it out: Thyroid Cancer

Also please feel free to see other NCCN® guides related to this community, including the Survivorship books, which contain quotes from yours truly: 

NCCN Guidelines for Patients®: Melanoma

NCCN Guidelines for Patients®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Basal Cell Skin Cancer

NCCN Guidelines for Patients®: Immunotherapy Side Effects series:  

Immunotherapy Side Effects: CAR T-Cell Therapy and Immunotherapy Side Effects: Immune Checkpoint Inhibitors

NCCN Guidelines for Patients®: Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects 

NCCN Guidelines for Patients®: Distress During Cancer Care

NCCN Guidelines for Patients®: Adolescents and Young Adults with Cancer

The Patient books are easy to read, well-illustrated, and are all available for free to view and print at NCCN.org/patients or via the NCCN® Patient Guides for Cancer App: Virtual Library of NCCN Guidelines® App – Available for iPhone/iPad and Android Smartphone/Tablet.  Keep an eye out for new guides all the time, they are ever-expanding. 

So there, that is my plan for the year - laid out in January - how organized! I'm also set for a couple of my own appointments in the coming months, including my annual CT scan in March. I'm also happy to be co-supporting, with a lovely group of inspired volunteers, an accredited 'Lymphedema Education Day' to take place later this year for Physicians and allied health care professionals in the Northern Health region. Stay tuned!

Day 732

Here it is, the two-year mark since I was informed I have stage 3b nodular melanoma, an aggressive form of skin cancer; with Breslow depth of 12.5 mm, Clark level 5, three mitoses per millimeter squared.  I have since learned what that means.  Bad news.

It was a clear sunny day, which quickly became dark, as my family physician explained to me that the sentinal node biopsy I had had the week prior showed metastases (spread of cancer) to my lymph nodes.  It was in my lymphatic system.  Even more bad news.  

Two years (plus a 'leap day') later: 731 days, 4 surgeries for melanoma, 8 immunotherapy treatments, 2 months on complete bedrest (9 weeks NO driving!), several missed events for 1 set of twins trying to keep on living during this battle, 9 CT Scans, 1 leg with lymphedema, 2 years away from work, a team of 10 physicians across 4 Ontario hospitals, 30,000 hits on my blog, countless emotional days spent in recovery later I am content to report that I can enjoy today with a feeling of peace that, upon diagnosis, I did not expect to feel ever again. 

Today I was invited to speak to a group of youth about the importance of sun safety, and I could not think of a better way to spend this clear sunny April anniversary.  Thanks to the Rocklyn Agricultural Society for inviting me to speak to Junior Ambassadors (Fall Fair) from around our region, about the importance of sun safety, skin health, and the serious nature of skin cancer, in that it is #NotJustSkinCancer.  

I was able to present to them the #NotJustSkinCancer video, as well as the Become a Skin Checker video which is a great representation (especially to kids/teens) of how to examine your own skin and that of your loved ones for dangerous-looking moles or potential problems.  The dalmatians are a fantastic way to give a visual representation to "SPOT Skin Cancer to STOP Skin Cancer."

I was happy to pass around the audience samples of sunscreen (which most applied to their noses and cheeks - it was so cute!) as well as the art piece I was gifted from the group filming the #NotJustSkinCancer video.  

They asked some great questions and I even ended up with homework to do!  I must get back to the group about "UVC" exposure, as we discussed broad-spectrum SPF and UVA and UVB radiation from sun rays, one student had heard about UVC rays as well - I promised I will ask the LaRoche-Posay experts next week at Melanoma Monday and I will get back to the Rocklyn Ag. Society with the answer.  

Thank you for the heart-warming way to spend an afternoon folks, and thank you for the flowers.  I will speak to you again soon!

As for the rest of the day, I am resting up from a busy week, an enlightening-as-always visit from The Warden --oops my Mom-- ;-)  and chillin' with the kiddos in the shade.  

Love and gratitude from me to you... thank you for being through 731 days and counting....      Thank you All!

And thank you to Claire for joining me today... "Daughter of the Year" as proclaimed by Cass  ;-)

PS - Today also marks 577 days since my diagnosis of papillary thyroid cancer, which was found in CT Scans for melanoma.

World Lymphedema Day

My experience with Lymphedema has not changed much in the past year; I still need to pursue further massage/lymph drainage, get the swelling down, and then get a stocking to prevent further damage in my right leg.  I am procrastinating.  And today is a good reminder that I should not do so. 

This is my post from one year ago today:

 www.impatientpatientmomma.blogspot.ca/lymphedema

And here are some new images and information... please feel free to share. 

Turning a Negative into a Positive

Part B of my meeting with Naturopath (ND) yesterday:

Instead of writing down everything I eat and how my body reacts to it, I will be keeping a journal of my healing process.

I may have gone in guns-a-blazing to the ND yesterday - hard to imagine I'm sure, for those of you who know how stubborn I am - cutting to the chase about how difficult I find it to write down what I eat every day.  I eat well, but I eat rich, mainly healthy, but writing it down forces me to face in yet another way how I am failing my body, or how it is failing me.  

I don't want to think about it any damn more than I already do!  But I have to, in order to help ND help me fix my tummy trouble.  Food and drink, water consumption, alcohol, vitamin and herbal supplements, all of it.  I go into fits of anxiety over writing this stuff down.  

You may have noticed I have not (yet) returned to the lovely Lymphedema massage therapist since meeting her in October?  She asked me to write down everything I eat and drink so that we can use that information to help my post-cancer therapy and physical recuperation.  Well, I have tried countless times but always by about day three I throw out my list with a huff of despair. 

I don't like to do things I don't like doing.  Um... I guess that sounds a bit like a two-year-old having a temper tantrum.  Well I am having a temper tantrum.  

I have enough to deal with that is out of my control, perhaps enjoying my cooking, eating, and drinking habits is among the few pleasures I have left in my life.  Any purist reading this may roll their eyes and say "come on Natalie you know better!  You can CURE your cancer with green smoothies and positive thinking!!"  *HUFF*  NOT

I know it is imperative when trying to diagnose food intolerances or other causes of digestive system upset to recognize patterns.  In order to recognize patterns one must document findings of results and prior behaviours.  Ugh!  I'm trying to live in the moment here people!!  Writing down my every swallow is not helpful to my psychological situation.  I just hate it.  

(See what my therapist - and my family - has to deal with??) 

ND said well, how about this: Keep a journal of my healing process and how I am feeling.  Write down how nourished I feel, body, mind, and spirit.  Write down what I did to nourish myself, whether that be take my calcium and iron supplements properly, take the dog for a walk, write on my blog, hug my kiddos, call an old friend, sleep for 78hours... just write the positive.  

Instead of beating myself up for eating some chips or drinking a bottle of wine, focus on the good stuff. And... more good stuff will follow.  Perhaps if I see a pattern of feeling better nourished after taking my iron supplements with a glass of grapefruit juice every day for a week, then I will just want to take the iron instead of bitching about it.  

This may seem basic to anyone who has not experienced what I have experienced - I don't mean to keep bringing that up, but it is key to my healing process.  Acknowledgement of my bad experiences is as important to my healing as is acknowledgement of the need for positive thinking.

In addition to the thyroid talk and plan to heal colitis-like symptoms, ND and I spoke about my concern about the weight I have gained.  It's not funny.  I am upset about my weight gain, my puffy lymphedema in my neck and leg, my altered physical state, and my resulting self-image.  

All my life I have been up and down with weight, I am well aware of HOW to lose 100 pounds.  In fact, I have done that before.  OhI'vebeeneverywhereman...   

The weight situation I have on  my hands now is a result of cancer, cancer treatment, cancer treatment side-effects, and the battle my body is waging against cancer.  

ND explained "Body is holding on to everything She possibly can because She is afraid of what is going to be thrown at Her next.  Been through the trenches in the last couple of years, so reasonable for Her to expect there could be more."  

Please no, I am desperately hoping not.  But I get the point.  Between the lesser physical activity due to fatigue/lymphedema/reverseT3 and the changed metabolism due to thyroidectomy, I knew upon diagnosis that my body would no longer be my own.  BUT - I would like to get back into my black velvet jeans!!  Lots yet to figure out about my "new normal" but I am still a woman after all!

Part of my Nourishment Journal will be to track patterns that may help with weight loss, but at this point I am not in the physical nor mental position to go on a protein diet or drink shakes for meal replacements or any of that stuff.  I have to go with my gut feelings on food, or at least on my gut's reactions to food so to speak, once we see if the probiotics will do the trick.  

Plenty of greens, grains, legumes, and water will improve my health as much as will reducing my intake of wheat, dairy, meat, sugar and alcohol.  I will approach all of those with a positive viewpoint on how I nourish my body.  Easy peasy, I actually already know this stuff, now just do it.

It is clear to me also that writing is part of this process for me.  It is cathartic, but it is also a good way for me to document patterns, share what I am learning, and to remind myself of all of these things when chemo brain makes me forget.   Blog is in a way my journal already I suppose... don't worry, I will keep the every day Nourishment Journal stuff private, I'm sure you don't want to know how many glasses of water I have had to drink today!  ;-) 

Farewell February

Who swims in Georgian Bay in February?  

This Guy:

Spring-like Weather 

+ Walk at the Beach 

____________________

Dog who needs a BATH!

Super fun though!  I don't mind one bit that winter/spring Sunday afternoons usually find Memorial Park deserted of visitors.  Reese and I walked all around the camping area and trails and back down the road to the beach, took the long way through to the dog beach and went off leash.  Whoop whoop!  

 

Dog remembers how to frolic at the beach yay!  He ran right for the water, went in to the armpits, then ran back out and in and out and in until he found the best stick ever and zoomed up and down the snowy beach rock with it.  It was pure pleasure just peacefully watching him and the waves washing up against the ice-covered shore.  And then the digging began... ah yes Labs can become obsessed with rocks and this Chocolate is no exception.  After a good half an hour of digging all around chasing this ONE particular rock he was panting and quite sandy and messy.  

Someone is going to sleep well tonight!  And yes he will be allowed on bed because he had a bath immediately upon getting home - buh bye beach mud!

I think I will sleep well also, it is almost the end of dreadful February.  Tuesday brings March and a whole new perspective on winter.  The days are longer already and the sun shining in the window on my back is nicely warm.  

March is busy for me and I'm looking forward to it (well, most of it).  

Next week I see my Oncologist at RVH in Barrie after having coffee with a friend at Gilda's Club, plus on Friday I am seeing a Naturopath who specializes in colitis/symptoms to see if I can avoid receiving the referral to a Gastro Dr. at Sunnybrook which The Boss (my Medical Oncologist at Sunnybrook) wants to give me.  The prednisone worked but now that it's stopped, the problem it cured is back.  :-(

March 6 is Lymphedema Awareness Day, and the the 7th I go to Sunnybrook for my 3-month bloodwork, consult, and CT Scans.  The 9th has me back at RVH for Therapist appointment, and the following week is March Break and the girls and I will be making a couple of trips to Barrie, RVH for therapist and a visit at Gilda's Club, plus the girls received tickets for Christmas to a rock concert at Molson Centre.  yikes?! ;-)

The week after March Break I will be working hard to help promote a little project I helped along in December.  Stay tuned!   

Well that should pretty much do it... back to quietly writing while Reese snores off his post-bath-and-fresh-air-frenzy.  Tacos were requested for supper tonight, plus I made a pot of the girls' favourite Italian Sausage Stew for their lunches this week.  Talk to you next month! LOL

Feeling Better

For the first time in almost two years I didn't cringe the other day when a friend asked me how I was feeling.  I noticed it right there on the spot!  I was happy to honestly answer "I'm feeling pretty good actually!" and it was a refreshing change.  My west-coast Uncle also sent me a nice text saying "I'm glad you're feeling better."  Being as we haven't spoken in a bit I again was surprised (at myself) that he said that, but I was happy he did.  I guess I am projecting it?  All the way to BC?!  Yay me  :-)

Yes, thank you, I am feeling a bit better these days.  Can it really be?  My quarterly CT scans have been clear, my Christmas holidays were busy but great, my liver seems to be recovering well from all the celebrations, my kids are motivated in all things responsible, my dog is loving the walks... dare I say: life is good.   

Perhaps I am over the hump; maybe all those shitty months of constant physical and mental fight against melanoma are going to give me a break.  

I am still experiencing severe gastrointestinal distress, but that may be a permanent side-effect of the lengthy ipilimumab treatment, only time will tell.  My medical oncologist is considering forcing me to take a dose of prednisone/steroids to help with my tummy, but I am fighting that all the way.  

My imodium and I are still comfortable to hang out close to home and give my body more time to figure out whether or not it will ever get back to normal.  I am back on the weekly parole calls to monitor it, mainly because I neglected to report to Sunnybrook a particularly bad bout of bathroom time I had before the holidays.  Ah well.  This is what I signed up for!

I exited the holiday season with a renewed attitude toward the new year and what I want to accomplish in it.

First off, I want to feel better.  

Second, I want to help others feel better, my kids #1, and then others who face the life sentence of malignant melanoma.  (please notice I said life sentence, not death sentence. Big difference, from where I stand)

Third, I want to write my book.  I have forever said that I will write a book someday.  The time has come.  I am spending a good portion of my recuperation time with pen (and keyboard) in hand.   

I am deeply grateful for the position in which I am in my life, able to use my time for whatever purpose I choose... relatively speaking.  It was a helluva trade-off, this melanoma shit, but I am making my lemons into lemonade and sipping it quietly while I recuperate. 

I am embracing recovery and rehabilitation not only from the physical assaults my body has encountered since April 2014, but also the emotional and mental pain my family and I have endured.  It will take time, and I am finally relaxing about that.  A bit.  

All that said, here is some news from around here:

• Due to snowy weather I postponed my oncology follow-up at RVH this week, will try again in a few weeks.

• I have begun drinking a health-potion of apple cider vinegar/lemon juice/cinnamon daily to help detox and heal organs such as liver and digestive system.  I also read that apple cider vinegar may assist in relief of the symptoms of ulcerative colitis I am experiencing, plus it is said to create an alkaline body system the likes of cancer's arch enemy.  It is time for me to gradually introduce the alternative approach I have been craving since signing up for clinical trial.

• Green smoothies also, the girls and I have been experimenting with spinach- or kale-based smoothies most mornings.  I have never been a big smoothie fan but frozen mango seems to be the key to success. 

• I still have to take hefty calcium and vitamin D supplements due to loss of parathyroid, and I have been dutifully chewing a daily B12 tablet to try to bring up my levels.  The tablets are pretty much tasteless but I find them much easier to take since my family physician told me I can chew them as opposed to letting them dissolve under the tongue (BLECH!)

• Essential oils, also key to good health.

 

I have begun with the classic Oregano, earthy Rosemary, and my long-time favourite, Bergamot.  Rosemary is found to have many of the healing properties I am seeking: analgesic, antibacterial, anticancer, anti-catarrhal (diarrhea), anti-infection, anti-inflammatory, antioxidant.  Oregano also for detox - last night before bed I mixed a few drops with coconut oil and rubbed it on the soles of my feet... felt good but according to Cass I smelled like "a lot of spaghetti" LOL!

 

• Dandelion tea, and lots of it!  I love this roasted dandelion tea so this is an easy one to increase in my diet for aid in detox and improve liver function as well as decrease fluid retention, especially for the benefit of my lymphedema leg. 

• Rest and relaxation, I have found I am truly enjoying some rest time.  I'm not so cranky about the chronic fatigue, I am resting for a bigger purpose: to recuperate. And I am feeling much less guilty about it.  The song lyrics "I can see clearly now, the rain is gone...I can see all obstacles in my way.." just floated into my mind... 

• Yesterday (snow day) the girls and I worked on capturing a new "profile picture" for me, as well as a little video clip for the I'm Living Proof website by Save Your Skin Foundation.  I am the LEAST photogenic person ever born (either that or I really look like that!?! YIKES) but we managed to settle on a couple.  I wouldn't do it but for the desire to connect with other melanoma patients/victims/warriors/survivors - more to come on that when I find out if my video made the cut.

• Very much looking forward to the launch of the video project I participated in last month, I even have a shiny new instagram account I am building up for the purpose of spreading the word.  It is a fun addition to my social media repertoire, so far so good!  LOL This is me: 

Also have a LinkedIn account now woohoo.  I am building these now in addition to blog as it will help when book promotion time comes along.   

That about sums it up for today, I have plenty of pots cooking and it feels pretty good.  I have been sleeping better and getting out more.  Hard to not want to walk the pooch when I have this to enjoy:

  

 #meaford #meafordharbour #melanomaawareness 

#ohwowI'mTalkingInHashtagsNow??   :-)

Article & Photos © Natalie Richardson 2016

December

I have been taking stock of the losses and accomplishments my family and I have experienced in the last year.  

It occurred to me when I was at Sunnybrook on Monday, that a year has passed since my most dismal cancer-related days.  I had had my thyroidectomy at the beginning of December, missed Claire and Cassie's theatre production, had an extremely painful incision and infection around my throat, was on bed rest trying to recover, and was just barely coping with the task of adjusting to my impending to-do list... calcium supplements, thyroid hormone replacement drug, inevitable radioactive iodine treatment, continued melanoma treatments, and... smile for Christmas!

At the same time, we received so much love and support... a catered turkey dinner gift, a raft of treats and gift certificates from members of our business community, a huge tasty delivery from my silent partners (in crime LOL) at my place of employ, even help with snow removal as I couldn't even lift a shovel at the time.  The support was priceless, and it carried us through a rough time.  My gratitude remains, and I continue to convey it through small gestures as I am able.  I will return the favours if it's the last thing I do! 

Thankfully it appears I will still have some time to do so.  All of the work my medical team has done and all the chomping my personal pacmen have done have bought me some time.  My diagnosis at the beginning was pretty dismal - average time of survival for my type of situation is around nine months - but the speed with which the oncologists at Sunnybrook helped me (and the swiftness with which my family physician booted me to them) saved my life.  I sit here a year and a half after diagnosis contemplating my past and my future, and I am deeply grateful for that.  

On Monday I saw my surgical oncologist for a 12-month checkup.  She is a lovely lady, strikingly tiny, obviously intelligent, and very kind.  The last time I saw her was the day I was to get the staples out of my neck/thyroid incision (performed by a different surgeon), and I had to show her my right leg which was at the time six months post-surgery she had performed in May 2014.  That day we had set the appointment for this year's follow-up, and it felt like neither of us were sure I would see her again.  

I was looking forward to seeing her Monday, and surprisingly she came into the room smiling as well and with questions about my long drive into the city - she actually remembered me! We chatted for a bit, she examined the scars she had given me, and she slapped my wrist for procrastinating on the lymphedema therapy.  

Happy to report she did not feel any tumours or ominous tissue around the sites of my two surgeries (mole excision and lymph node dissection).  She then moved to examine the lymph nodes in my neck and I joked that there were 37 less nodes in there from last time she saw me and she commented back "well he was generous! How many did I take?"  I replied 13! (I can't recall my own postal code but these numbers are stuck in my brain)  "Hhmm," she said, "but I did more damage."  I told her it was okay, it was worth it.  I thanked her for saving my life.  And she smiled "don't thank me, it's a team effort."  How modest. 

We also discussed my CT scan reports of the last year, and I told her about the enlarged nodes in my neck.  She offered the perspective that the ipilimumab immunotherapy treatment I had been receiving was quite likely to affect lymph nodes.  Fair enough, that echoed my medical oncologists comments as well.  Surgeon also suggested that this treatment would wreak havoc on my thyroid (or lack thereof) situation, and she concurred that I should start feeling better in the new year as we move farther away from my last ipi treatment in September.  

All in all it was a good follow-up, and we agreed to meet again next December.  12-month check up with surgical oncologist, that is good.  I am still in the 3-month check-up zone with medical oncologist (melanoma) for a while, and still 6-months with endocrinologist (thyroid cancer related).  

I did my bloodwork and had meeting with medical oncologist on Monday as well, we had just seen each other four weeks prior so not much new to discuss.  So far so good! 

Did my CT scans Monday as well, and that went better than usual! I learned something new that day - you can put clear liquid flavouring in the huge jug of yucky chemical water stuff you have to consume prior to a CT scan.  I was being whiny to my favourite CT nurse about the water and she said well you can flavour it!  She squirted in some of her Mio orange-flavoured stuff and I was able to drink the whole bottle without gagging.   I told her she changed my life!  True story.  That's how much I hate that stuff.  

My tummy hates it too, and I was pretty much bed-ridden Tuesday after late return home Monday night and lots of bathroom stops, but I am feeling better today.  Which is good, because it is Christmassy-chaos around here, plus I have a big day tomorrow.  

Back to the city tomorrow: I am going for the filming of an interview with a team producing a video about living with skin cancer for the purpose of educating people about the dangers of frivolous sun-tanning.  This video is a collaboration between a pharmaceutical company and a couple of other teams, and it will launch in February.  I have been jotting down some notes on how to concisely express my perspective, Wordy-Me has to keep it to a few short seconds!?!

I have yet to be able to explain my feelings about the sun and how I feel about it's role in my life and also in my illness, but I am keen to share with others that they should not take risks when it comes to their skin health.  Sun-tanning for vanity or cosmetic reasons is not safe.  It can ruin your life.  I'm living proof.  

Speaking of  "I'm Living Proof," I am also working on a written bio and short video for the SYSF "Melanoma Connect" initiative to help melanoma patients find peers to help support them in their diagnosis and cancer journey.  Via social media including their new website "I'm Living Proof.ca" the folks at Save Your Skin Foundation are working to help people feel less alone in their melanoma diagnoses.  

It is indeed a frightening disease, and patients need every tool they can possibly embrace to help them through it.  I am part of this community and I will put my star on their map, perhaps to help someone recently diagnosed, but also to receive support myself as I live with metastatic melanoma.  

Otherwise around here things are running as quickly as always, the three girls and I put up our tree last weekend, yesterday I attended Claire and Cass' school Christmas Dance Extravaganza, today they are having their classroom gift exchanges, and tomorrow is their dance and continued partying at school while I venture to Toronto.  One cool thing, their homeroom teacher is showing them the movie One Magic Christmas, which was filmed in part here in Meaford in 1985. 

All in all this December is so far better than last December, different challenges lie ahead, but they are bouyed by hope and definitely ambition.  

Thank you again for your continued friendship and support.  Merry Christmas!

Good Intentions

October 26 today? Last post so enthusiastic about the lymphedema therapy journey to which I was hellbent on committing?  Dermatologist appointment postponed AGAIN?  Several friends questioning my actual existence due to (my) lack of communication?  Shit, it has been a busy few weeks. 

I find myself frustrated again today. Surprise!!  Not necessarily cancer-related, but I'm sure I will inevitably spin it that way.  Every day I examine my actions, more than I did before (cancer).  (See - did it already!)  I want to accomplish things, I want to nail that to-do list, I want to be everything my kids need me to be, I want to NOT be a downer to my friends, I want to survive my kitchen renovation without the hair loss I was fortunate to avoid during my immunotherapy... but I somehow always feel like I fall short. 

I'm doing the best I can but that "take one day at a time" stuff is actually very difficult to do.  When you break it down into small pieces and truly look at it and realise you're just too tired to do it all, it's a real pain.  I try, but.. what's that they say about the road to hell being paved with good intentions?

I ran into a friend today that I haven't seen in a while, and we chatted quickly to catch up "in code" in a busy store with our kids in tow.  I was open about the fact that yes I did want to get together for coffee and a visit, and I was also open about the fact that I probably wouldn't be able to commit to the actual coffee date in the next couple of weeks.  She seemed to understand and is equally busy, we hugged and wished each other well and we will try again in a few weeks.  *sigh*  I feel bad!  

More importantly what I got from the conversation is my friend's comparable feelings of guilt for not being able to do the things she "normally" does.  She happens to be temporarily off work for health reasons as well, and one of her first identifications of things we have in common right now is the guilt for being "off."  She said the same things I feel every day; in our quick conversation we bonded over that mutual feeling but we also agreed that we need to look after ourselves and our kids numero uno.   Why can't we just shake the rest of the feeling and just go with the looking after ourselves and kids thing?  Aarrghh

Part of looking after ourselves IS the visiting with friends and the social support we receive in doing so.  And I truly mean it when I say I want to visit!  But I notice that I am less and less able to commit to the coffee date.  With the people who are my FRIENDS!  

I am so absorbed with what my family and I are doing, and I am inconsistently and sometimes unexpectedly exhausted so I just run out of time.  Days run into weeks and my feelings of guilt compound until they feel like a noose around my scarred neck and I retreat, I hibernate, I listen to my therapist saying "stop being so hard on yourself!"  I love my friends from a distance.  And I keep plowing through the to-do list as I see fit.  

Therapist says that's okay, I (we all) should be doing exactly what I (we all) want. At any given moment.  Oohh that's a huge statement, what a can of worms!  I believe that if we all just ran amuck doing what WE want then everything would be a disaster!  But that could be my Catholic upbringing speaking... how do the Sociopaths do it, like really?? 

The core of what is bothering me I think is actually the number of times I have had this happen lately.  I haven't invited my veggie friends for a visit since.... ummm.. as I told them last week when I ran into them downtown - I still have their Christmas gift from last year!  I am the WORST.  We talked about having tea, they emailed me, I still haven't caught up on email.... and I have not had the visit.  And last week also I completely stood up another friend I haven't physically seen since I was first diagnosed - how the hell could I FORGET that we were going to meet?  I can blame chemo brain, but I really hate that.  I postponed my much anticipated lymphedema treatments again. My CCAC nursing visits too, I have cancelled the last three due to scheduling conflicts.

The road to hell is paved with good intentions is a proverb or aphorism. An alternative form is "hell is full of good meanings, but heaven is full of good works."
One meaning of the phrase is that individuals may have the intention to undertake good actions but nevertheless fail to take action. This inaction may be due to procrastination, laziness or other subversive vice. (I don't think this is me...)

Nonetheless, the saying is an admonishment that a good intention is meaningless unless followed through.

But how?  I WANT to have the friend visits.  I WANT to deal with the lymphedema.  I DON'T want to see the dermatologist...but anyway...  I think maybe I'm just tired of all of it.  I want my life back.  I cannot fathom that this is my "new normal."  I want to go to work, be healthy, run around doing everything all the time, not have to discuss why I am not at work and why I am so antisocial.  The stigma alone is worse than the diagnosis!  

I have no idea what to say when people ask me about my health.  My years of intermittent therapy-couch time have taught me to truly answer WHY I'm frustrated.  Well, this is likely it: I don't know what to say.  Metastatic Melanoma is a shitty goddamned enigma of a fatal disease and I am back to feeling like I have a digital clock blinking above my head counting down my time to live.  

I'm pretty sure that's simply Fear speaking, I don't have any medical-speak news as to why I feel this way. My last CT scans were same, no progression of disease. Unremarkable. Fantastic.  But I am still plagued with confusion about what to say when asked by friends how I am doing.  

I don't know.  I know I'm still here today, and I know I am helping my kids throw their kick-ass annual Halloween party again this weekend, and I know I have three trips to Sunnybrook in the first three weeks of November.  I know I'm still having major insomnia and I know I'd like to strangle the surgeon who made my baby cry a couple of weeks ago when re-opening her ankle surgery scars to remove TEN-FOOT LONG screws with a WOODEN screw driver!!

I can't get any more honest than that.  I hate everything. (to quote George Strait.) (Yes. George Strait.)

Thank you for listening, if you're still here reading my complaints, then awesome, yes, writing is therapeutic for me.  I wish I could learn to write FICTION!!   

Did I mention we are half-way through a kitchen reno right now?  I took a photo of my pooch the other day which just perfectly summed up my feelings.  He was looking all dejected curled up on the most uncomfortable part of the half-remodeled living room floor in the middle of all the renovation rubble and I couldn't help but giggle at that woeful little face:

PS - It's also full moon time.. that accounts for a certain amount of crazy in this household.  ;-)