Sentinel node biopsy

On December 16th I had surgery - a sentinel node biopsy. The pathology from this will determine my radiation plan.

I am crossing everything that it comes back clear!

I should find out in early January.

Chemo complete!!

On November 21, I had my final chemo treatment!

I am so relieved this portion of treatment is over. 

I am also in awe of myself and proud. I wasn’t sure I could get through another intense round of chemo and I did it!

Chemo healed me. I am grateful 💜

83 percent done chemo!

 I had chemo 5 of 6 last thursday and I'm 83% done -- one more to go and finish line is in sight.

I can't wait!!

I did ask Dr. Watson to lower the taxol dose a bit for this round as my neuropathy is quite bad. i'm using compression socks and gloves to try to help with it.

I asked about risk of lowering the does (it was only 10%) - he said it would not impact overall treatment and also said some people choose to stop this chemo regime early - eg: after 4 doses instead of 6 - so I am doing very well for continuing and finishing.

November 21 is my last one!!!!!

The love hate of chemo- it’s saving my life

When I found out I had to do chemo again - I was pretty devastated. It is such a tough journey for so many reasons. You feel so tired and unwell, you lose your hair (even with a cold cap it thins) and you don’t feel like yourself. The meds make you bloated and swollen. Your immune system is garbage and it limits your social life. These are just a few things that chemo does.

When I found out - I wrote a list of everything I fucking hate about fucking chemo! And I burnt it.

It did feel good to get that all out.

Shortly after I made a list of why I am grateful for chemo and cancer treatment. And that’s what I’d rather share here.

I am grateful for chemo that will heal my body and rid it from cancer now and in the future 

I am grateful my cancer was caught early

I am grateful for more time, I’m not done yet!!

I am grateful for a pic line that saves my veins

I am grateful for an excellent medical team 

I am grateful for microblading and cold caps 

I am grateful for anti nausea drugs 

I am grateful treatment is temporary and won’t be forever

I am grateful for my circle of support

I am grateful for being who I am now - strong, resilient and focused on me!

I am grateful I can ask for what I need this time

I am grateful that chemo is saving my life!!

Gratitude season

 in October we had Canadian thanksgiving, and I started to reflect on everything I'm grateful for in this second journey with cancer.

I have so much to be grateful for!

I am grateful for my team of doctors at Mount sinai/Princess Margaret hospitals who have rallied to take care of me once again - I feel safe in their steady and capable hands and I know I’m in the best place possible.

I am grateful for Jeff for taking this fight on a second time, and being an exceptional caregiver, I know how it can take such a toll on him and he is by my side for it all.

I am grateful and overwhelmed by the love and support I have received from family and friends -beautiful flowers, Uber eats cards, balloons, doggie pillows, candies, soothing tea, cozy socks, inspiring jewelry to give me strength, a delivered thanksgiving meal from family, prayers and positive vibes, and most importantly so many messages of encouragement, hope, and love that is getting me through each day in this marathon!

I’m thankful to have good days in all of this when I can still get out for dog walks, exercise and socialize, as it all helps with my mental and emotional health in addition to physical health. 

I’m grateful for squeezing in some fun, especially before chemo - cottage, concerts, jays games. I’m excited to plan more exciting things when I am healthy and recovered from chemo.

I’m grateful again for Wellspring, an excellent support organization for people going through cancer, and I’ve been able to do several online classes during chemo which also help my healing journey. 

I’m grateful for my own resilience and strength to make it this far in treatment when I didn’t know if I could at the beginning. 

Cancer is a life altering event and at times when you think you can’t go on, you dig deep and find a way to go on!

#jenstrong #cancerslayer #livethefuckoutoflife #begrateful 

67 percent done chemo!!

 on Oct 10th I had my 4th chemo session.  Dr. Watson saw me before and told me I'm doing very well, and that I'm "blowing through this" lol

sometimes it doesn't feel that way but the fact that I was able to bounce back from the emergency room visit, and antibiotics, and be ready for cycle 4 - I am proud of my body!!  

I got a cold shortly after chemo #4 unfortunately, but that's almost gone now.

Session 5 will be on halloween.

Marcella got me balloons to recognize this milestone :) :)

got to celebrate each step and each win!!

Genetics testing

I got the results back from my genetic testing this week and thankfully I don’t have any of the dozen or so genes they tested for!!

Thankful to have some good news in these darker days.

Emergency room and hospital visit

Well, coming off reaching 50 percent done chemo, I started to feel a bit off Friday night. My left ear started to hurt and swell.

I woke up Saturday and it was getting worse and I also took my temp to realize I had a fever.

Jeff took me to the ER that morning. I ended up in the hospital for two nights as they tried to get my fever down and pumped me with antibiotics for my infection, which they said was cellulitis.

It was a pretty horrible experience not just because I was unwell and worried for my own health but Ontario hospitals aren’t in the best shape. It was crowded, noisy, felt dirty and was overall traumatic honestly!

I can’t even talk about some things I saw and experienced right now.

It’s also shaken my confidence a bit. I have three more cycles to go and I really hope I can stay healthy and on track.

50 percent done chemo!!

On sept 19 I completed chemo #3 and I’m now 50 percent done ✅!

It feels like a big milestone and I’m grateful to achieve it.

Hot peppers and radical acceptance

I recently signed up for these emails that have stories and journal prompts to support my healing process. This one really resonated.

Forwarded this email? Subscribe here for more

Hot Peppers & Radical Acceptance

& Laura McKowen on the wisdom of no escape

SULEIKA JAOUAD SEP 15

READ IN APP

Hi friend,

A few weeks ago, at a medical appointment, I was discussing my mindset around resuming chemo with one of my favorite nurses—one who cared for me when I was diagnosed with leukemia at twenty-two, then again two years ago, and now a third time—and she said, “You seem weirdly calm.”

I replied, “I feel weirdly calm.” And it’s true. At first, I thought I was in shock or maybe even denial—and sure, there’s probably a little of both. But mainly, I think I feel calm because I’ve accepted my circumstances. It’s taken me a long time to get here. Over the last thirteen years, I’ve raged against the realities and limitations of illness. I’ve stewed in self-pity. I’ve fallen into the comparison trap, envying others who don’t have to endlessly deal with such health conundrums. I’ve numbed myself to my reality, binge-watching bad TV and indulging other means of escape. But the fact is, that illness and its imprints have been a constant specter in my adult life, and as much as I may want to, I can’t look away. Illness and its attendant complications—everything from doctor’s appointments to uncertainties about the future—are simply here. It is what it is, and no amount of avoidance gymnastics will change it.

That’s not to say I don’t feel fear—of course, I do. But strangely, the anticipation of pain can be far scarier than just being in it, actually confronting it. After my first transplant, in the years when I was cancer-free, I felt hijacked by the prospect of a recurrence and afraid that I wouldn’t be able to handle it. When it actually happened, I faced it. Knowing that, I have been trying to practice a kind of radical acceptance of whatever comes up, responding with whatever the situation calls for.

Take last weekend, for example. On Saturday, I had to go in for my last infusion of my second round of chemo. The side effects compound day-to-day, and afterward I felt awful, and I knew I’d be spending the day in bed. It had been a rainy morning, but on my way home, the sky began to clear, and I beheld a spectacular rainbow. For a moment, I glimpsed a sense of wonder. When I got to my room, I said to myself, “If I have to be in bed all day, so be it. What can I do to make this a little less miserable?” I took some anti-nausea meds and got a big glass of water. I put on my favorite face oil, wrapped myself a heating pad, gathered my pups around me, and queued up some favorite old movies to watch. Did I still feel awful? Yes. But instead of fighting it, or lamenting all of the things I wouldn’t be able to accomplish that day, I accepted it. And it turned out that staying in bed all day felt almost luxurious.

Then came Sunday, and I felt a little better—good enough to get up for a couple of hours and spend some time in the sun. My mom was visiting, and my friends Cat, Jonny, and Liz came over to pick peppers from our garden and make homemade hot sauce. It was a perfect early autumn day, with all three dogs snuffling around outside the fence of the vegetable patch. (Outside because Sunshine seems not to understand that peppers are not a suitable snack for a pup.) Afterward, everyone got to chopping the peppers and jarring them for fermentation. By the end, I was so tired that I didn’t make it to dinner—I went to bed hours before everyone else—but I was sated by the good hours I’d spent.

Earlier this summer, days after I learned I was going back on chemo, I was drinking coffee on the porch with my dad. He said that somehow he felt there would be a miracle—that someday all this would be behind me and I would be well. I understood the impulse, especially for a parent. And would I like a miracle cure? Sure. But I can’t anchor my sense of well-being in some future unknown, be it a miracle or something else. It doesn’t bring me comfort to hope for something that’s so far out of my control. I need to stay within what I can control, and what’s in my control is how I feel right now, how I live my life right now. And my life right now is good. It’s good despite illness. It’s maybe even good because of it—because of how it has clarified what I value and rerouted my priorities.

I’ve been thinking recently that the people I admire most are not those who bend reality to their will, but who accept it and find creative ways to engage with it. I think that’s my definition of resilience: to accept what’s happening moment to moment, and to allow for necessary adjustments, to pivot, to find relief, to cultivate small joys. And in that same vein, I try to plant seeds for future joys, for things to look forward to—like next weekend, when our tabasco peppers will be ripe for the picking.

With that, I’ll turn to today’s essay and prompt, called “The Wisdom of No Escape” by the inspiring Laura McKowen. It’s a powerful meditation on what happens when we stop running from discomfort, when we summon the courage to stay present—to welcome whatever the day, the hour, the moment will bring.

Sending hot, hot, very spicy love,

Suleika

Radical Remission - surviving cancer against all odds

 I've been reading this book Radical Remission over the past several weeks and I wanted to share some of the insights from it as I think it makes alot of sense.

The book talks about 9 key factors that can make a real difference for those of us with cancer.

1) radically changing your diet

this is really around the eat to live philosophy that i've read about before and partly why i changed my diet to alot of plant based foods during my first diagnosis.  there's definitely ways to be more strict - eg: no sugar at all, zero alcohol - things to consider going forward.  Also really restricting any processed foods and focusing on whole foods in your diet. 

2) taking control of your health

this talked about more than just physical health - of course exercise is key, however healing also could including things like going to a naturopath doctor, going to a psychotherapist, going to an energy healer, even things like massage and acupuncture.   mental, emotional and spiritual health is important too. 

3) following your intuition

this was interesting - it was about quieting your mind through things like medication and guided imagery and then charting a course for yourself to heal based on your intuition.  journalling can help too. it's about discovering what will help you heal from a holistic perspective.  it could be something like a gratitude practice that you begin.  or it could be other concrete actions too.  it talked about how cancer is built up or blocked energy, that can be released. 

4) using herbs and supplements

this section spoke about various herbs and supplements people have taken to help heal their cancer.  something as simple as a probiotic to anti fungals and liver detoxifiers (eg: garlic, oil of oregano) and also immune system boosters - 12, vitamin C and D, tumeric, Green Tea etc.   I could see the guidance of a naturopath being helpful here. Or - even pursuing chinese herbs/medicine.

5) releasing suppressed emotions

the next few sections I found super interesting!  this section talked about how releasing stress actually builds your immune system.  the key is to find a place a peace.  at peace with dying and at peace with living.  not an easy task but if you bring your body into neutrality it can be in rest and repair mode.  so I need to let go of fear and uncertainty, and stay peacefully centred in the present moment - then my body has the ability to heal.

journalling can release emotions! you can even write something out and burn it (more on that later :))

also practice daily forgiveness of myself and others.

therapy is also very beneficial here :)

6) increasing positive emotions

this is pretty self explanatory but some ideas to do this were:

start and end day with gratitude!

find ways to smile and laugh each day - boost your immune system with comedy! and also surround yourself with people that energize you

also get active - get out in nature, dance, do meditation, call a friend

7) embracing social support

thing like wellspring, support groups, and ways to connect with others are so important and helpful for healing!  i'm doing the healing journey class with wellspring right now and it's awesome.

8) deepening your spiritual connection

this section went into things like deep breathing, walking outside in nature, doing guided meditation and following guided imagery practices, as well as looking at things like daily prayer and spiritual groups.

9) having strong reasons for living

i loved this section.  there are a few exercises suggested that I will do.

Write down how many years you want to live

Write down your ideal obituary of how you want to be remembered and what you have accomplished

Make a list of all your current reasons for living and enjoying life!

Think about what you'd change in your life - and make your remaining time on this planet as enjoyable as possible. - eg: career, relationships, hobbies, spirit

Have strong dreams and a desire to be well.

Think about what you'd regret not doing if you have 2 years to live?

Why do you want to stay alive?

What activities bring you energy and joy?

Great thought provoking questions that I will be journalling about :)

Some other quotes/insights:

be grateful for every day and do what you can to make a lot of good days happen!!!

What I am taking away from this is there is much more than just traditional treatment for cancer that can help you heal.  Lots to think about and put into practice here for total healing.

The forgotten patient

I’m feeling frustrated today with my care at mount sinai and this is unusual as I’ve always felt I’m in the best hands.

It was suggested I do a more fulsome genetics panel this time as last time I was only tested for brca1 and 2. It was initiated in July and was supposed to take 2-3 weeks. I followed up last week to ask about it and it turns out the lab didn’t do it. I’m frustrated that as the patient I’m the one tracking this as it could inform my treatment plan - eg more surgery. Where are my two oncologists and the genetics contact??

it’s now been expedited but it certainly makes my care feel less personal. Like I’m a number and not a h human with a life to get back to. 

I want to know my full treatment plan!!

It’s a marathon!

I’ve had a few people acknowledge that they didn’t realize how long treatment takes and they are surprised at how long even chemo goes on for.

It’s not something I forgot that’s for sure. I know this part would be tedious, tenuous and drawn out. It’s a hard place to sit in sometimes.

This is where the patience really comes into play. as well as the emotional and mental resilience in addition to trying to survive the physical blows of chemo.

To some extend life is on hold and that part is certainly frustrating.

I have fomo for some things for sure.

But I also want to be careful in my activities as it can wear me out, or I can be more susceptible to illness which I really don’t want. As much as I hate chemo, I want to keep this train going and not derail the schedule. 

So the priority remains trying to stay as healthy as I can and rebound safely and well after each session.

Fingers crossed for 4 more successful rounds.

33 percent done chemo

I had my second chemo on August 29th - 33 percent done!

Side effects were very similar to round one but I am going to flag some concerns because I feel the peripheral neuropathy quite a bit in my feet still. If they are willing to lower the dose I may ask.

The Lapelga white blood cell shot also still sucked. I may see about changing to Neulasta which I had in 2016. 

My hair is really shedding quite a bit :( 

It’s hard to watch but I want to stick this cold cap process out as at the very least my follicles are being protected for faster regrowth after this is over.

Hats are my friend right now.

I’ve been getting some hot flashes this round too so I guess I’m in chemo induced menopause - fun fun!

For this second round I used an electric blanket that Marie and Erin got me and it made a huge difference!!

So cozy. 

On Sept 19 I will do chemo 3. 

Chemo #1

I had my first chemo on August 8. It was a long day! I had to get my pic line placed which took awhile and I’m also doing cold calling before during and after the infusions so it adds time to the day. Next time should be better and faster I hope!

Jeff was with me the whole time :)

the side effects of this protocol - carboplatin and paclitaxol - were a lot of fatigue, nausea and GI issue, dry mouth. I also had some insomnia from the steroids and leg pain from the white blood cell shot. It was not the most fun week or so.

I’m doing ok in the off weeks although still have some bouts of tiredness. I have been able to do some light workouts though so I am happy about that! I’m doing light weights and yoga and walking the dogs. It does a lot for my mental health to be able to move despite the pic line and side effects.

It’s breast cancer

Well, as much as I’d hoped that surgery could be enough - the pathology from surgery showed a new breast cancer.

Dr Gladdy gave me the news - the good thing is surgery was successful with clean margins, and the cancer is out!!! But she had arranged for Dr. Watson to see me immediately after - he will be my medical oncologist this time.  I will be moving ahead with chemo in August. 

I liked Dr. Watson right away and I know he wants to help me. He called this another “bump in the road” and that he wants to get me through this and have it be in my rear view mirror again as soon as possible. I like that attitude! 

There is a new protocol option available now that I plan to try and I also have the option to try a cold cap. Which means I may keep some hair or at the very least it will protect my follicles for faster regrowth and less thinning.

It’s good and bad that I’ve done chemo before. In a sense I feel more prepared. I got my eyebrows microbladed so at the very least I don’t need to draw those one which is a big deal. I also know how tough it was. Not just the side effects. Which at times were really tough. it’s the isolation and loneliness that comes with having cancer. 

I know it’s 4 months of a hard road. I will pull up my big girl pants and get through.

I feel a lot of love and support which is overwhelming and I am so grateful for it.

I am grateful also for a strong medical team that has my back and will do what they can for me. I know I’m in the best place for the best care. 

Surgery complete and processing it all

On Friday June 21st, I had surgery at mount sinai to remove the tumor in my left breast.

Based on the initial biospy, the tumor was NOT triple negative breast cancer - they believe it is a type of sarcoma.  So I was referred to Dr. Gladdy who specializes in this rare type of cancer, and she was my surgeon last week.  Another excellent doctor at Mount Sinai - I'm so thankful for their fast and considerate care of me.

Now we wait for the pathology to confirm the type of cancer and any further treatment needed.  If it is the sarcoma they believe - I may not need chemo or radiation.  And if she got clean margins, no more surgery either. this would be the best case scenario and the one I am praying for!

It's been a whirlwind this whole situation.  I am now trying to process everything and deal with the mental and emotional journey, as well as rest and recuperate from surgery.

I'm grateful for so much - for my mammogram being expedited, for seeing the doctors so quickly, for a fast MRI and ct scan, and for a very quick surgery taking place.  This shit is out of me and that's a huge mental load off me!

However I am processing how and why this came to be and all kinds of feelings are here to be addressed.  Shame, guilt, fear, sadness, frustration.    Cancer made me crash into the wall once again, and life was halted to deal with it.

I'm frustrated because I was in a great groove, in a new role at work and gearing up for summer.  

you make plans and god laughs!!

My head went to the darkest places too - thinking the same cancer was back and all over my body and literally time was going to be up.  until I was told otherwise - and of course I am so thankful and relieved for this.

I'm still a bit pissed off though.  there's always the why me in there.  what's the lesson this time?  I already have faced these lessons before.

what is out of balance that i need to address?

On the positive side, i very much feel the love from friends, family, colleagues, my boss.  I know I am loved and I am so supported this time.  It's overwhelming at times, how much love I do feel.

And I think for me - that's what I need to focus on and hold on to.  

Even if it had limited time left - heck any of us might - how would I want to live? what are my values?

I want to have joy and be content in life.

I want to be around people and things that bring me peace.

I want to continue to have special experiences and make the most out of this life.

I want to share love and share kindness and share hope with people.

I want to live with courage and resilience and optimism.

I want to leave a legacy that reflects these values. :)

Life interrupted

In an update that I never hoped to share - 8 years after my first diagnosis I am dealing with a new health issue, a lump in my left/opposite breast.

It’s been a tense month or so as I advocated to get my mammogram moved up and I awaited the biopsy and then the results of the mri and ct scan.

To say I was scared is an understatement.

now that I know it’s localized and treatable, I am fully digesting this turn of events.

Very grateful for how quickly things are moving and that it’s a good scenario. I have surgery this Friday and will then know what other treatment I need.

🤞🏻🤞🏻🤞🏻