From grieving to reframing – Coming to terms with terminal cancer

Here is the second part of my post. This portion talks about how I processed and eventually came to terms with knowing that seeing my kids grow up is statistically not in the cards for me.

Coming back to the evening of September 11, 2019, the day I found out my cancer had spread to my bones, I reached out to a friend who also has breast cancer. Even though I called right before dinner, she took time away from her husband and two young kids to speak with me. I talked and cried. She listened compassionately and then reminded me of another friend of ours had Stage 4 breast cancer with a similar diagnosis to mine. Between the three of us, we talked and texted for hours that night.

Over the course of the next week, I spoke to my medical oncologist, my surgeon, was referred to a neuro-oncologist and had more scans than I can remember. I was started on a hormone therapy that made sure that my chemo-induced menopause continued for life. I also started on a second targeted therapy called Perjeta, which in combination with Herceptin, binds to the protein receptors of the breast cancer cells, preventing them from receiving growth signals.

Typically, someone diagnosed with Stage 4 breast cancer would not get a mastectomy. There were now questions as to whether or not my surgery would proceed as planned. However, new research indicates there may be an advantage to removing the primary source of the cancer. Two weeks later, I had my mastectomy and said goodbye to one of my breasts and 6 lymph nodes. Chemo had already taken away my hair, eyelashes and eyebrows, which are important to my appearance, but at least those grow back. My right breast, however, was gone forever. It’s a scar that reminds daily of how fragile my life is.

Even though family, friends and community members were helping me every step of the way, I still felt isolated and alone. I was terrified. My emotions were following the ups, downs and twists of the wildest roller coaster ride imaginable. One day I thought I was fine and coping well and the next day I was sobbing hysterically. Working with a counsellor from the Psychosocial Oncology team and my GP Oncologist, I slowly regained control of my emotions.

Next up was radiation. I thought chemo was hard, but I had no idea how debilitating radiation would be. My first round of radiation was delivered with a Linear Accelerator (LINAC), one of the most commonly used machines for external radiation therapy. By my third of my 16 radiation fractions of my treatment, I was sleeping between 12 to 14 hours a day. By the time I was done my treatment on December 10, almost three and a half weeks later, I was virtually bedridden. And, side effects hadn’t hit their peak. It usually takes approximately three weeks for the full effects to hit, which meant I spent Christmas and New Year’s in bed. [Read my blog “What I’m doing about the cancer Grinch who stole my Christmas” here.]

My time to recuperate was short. On January 3, 2020, I had the radiation mapping for my spine. Less than three weeks later, I underwent two fractions of Stereotactic Body Radiation Therapy (SBRT) to my T11 vertebral metastasis (mets). This is a relatively new type of radiation therapy, which delivers very high doses of radiation to specific tumours that are in difficult or hard to reach areas. Because a higher dose is used, fewer fractions are needed. Don’t be fooled! It doesn’t mean the side effects are any less miserable. While SBRT didn’t leave me with burned and bleeding scars like LINAC did on my chest, nor did leave my back “tanned” in the same was my face was after my chest radiation, it caused other side effects. With the dosage I received, I now have ~15% risk a spinal compression fracture to my treated vertebrae. I also experienced unbearable exhaustion.

Because I hadn’t been through enough, I still needed more treatment. A final palliative treatment that was added to my regimen in January was a bone metabolism regulator, given to me via IV infusion (just like chemo) every 12 weeks. This treatment aims to slow the destruction of my bones by the cancer and to reduce the speed of my morbidity progression. On one hand, I want to live as long as possible. On the other, it’s still hard for me to think that the longer I live with breast cancer, the more likely I am to have debilitating pain from the bone mets. I try not to think of my life in a long-term setting anymore. I have decided to look no further than 3 months out.

It took me 6 months to get through “grieving” my old life. It was only in March that I truly came to terms with the fact that I would never work or teach again, wouldn’t finish my second Master’s degree, nor do sports or travel as I did before. I reluctantly accepted that and that I possibly would not see my son turn 5 and most likely not see him turn 6. It became increasingly clear I have a limited time to spend quality time with my family and friends. My epiphany was that I need to do exactly that while I have my health. I’ve come to realize that I don’t know how I will feel or what I will be able to physically 6 or 12 months from now. Once I accepted this new reality, I was finally able to redefine how I fit into a world where my life had completely changed. Now that I am focusing on having meaningful experiences, I know I am building lifelong memories. That’s what drove my blog’s rebrand a few months ago.

Did you find the post useful for yourself or a loved one? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

New bedtime routine to combat chemo side-effects

My new bedtime routine, brought to you by chemotherapy…

I have purchased ice booties in the hopes to prevent further Plantar Erythrodysesthesia and to start managing the neuropathy I’m starting to get around my ankle and outer foot. Additionally, my nails are starting to turn yellow, so I’m hoping the hive will prevent them from falling off.

My vision issues are also back. Earlier this week, I wasn’t able to see near or far. My vision was completely distorted as well as doubled. I couldn’t watch TV or read. Ii went to the ophthalmologist, who confirmed that my Dry Eye Disease has not improved despite using 2 different drops and an eye gel. She also noticed that I’ve developed Blepharitis and that the meibomian glands in my eyelids are inflamed. So now, I must also wear a heated eye mask for 5 minutes twice a day, and then massage my upper and lower eyelids with the hope of unblocking any residue in the oil-secreting meibomian glands, which is causing eyelid inflammation. I have a follow-up appointment in 2 weeks to see if it’s improved.

Chemo, you are not my friend, but you are helping me. I guess I have to put up with you for a few more months. Please be kinder…

Are my blog posts helpful to you or someone you know? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

Nosebleeds

The arrow in the image below is pointing to the empty station ready to for me at the Get RIPPED! Buffet class. Unfortunately, a heavy nosebleed, which started on my way to Repsol Sport Centre, prevented me from ever getting started.

As a chemo patient, if a nosebleed isn’t stopped within 20 minutes, it requires a visit to the ER. That’s because my platelet count is likely low and usually the reason I can’t form a blood clot naturally. It also explains why I bruise so easily.

When it hit the 20 minute mark, I texted my husband to let him know that I was going to call 911. It’s dangerous to drive with a bleeding nose as you are not only distracted, but if you have lost a lot of blood, it could result in fainting.

My husband was just about to go out of town with friends to cycle between Canmore and Banff and get a much needed break from watching the children.

About 5 minutes after he arrived at the gym to help me gather all my belongings and get me in the car, the bleeding started to ease up, so we turned around and went home. It stopped entirely a few minutes after getting home. Thankfully my husband was still able to make it to his meeting point for his bike ride before his buddies left town, so he can still get a day to himself “sans kids”.

I guess I get an “A” for effort for at least showing up at the gym. It’s too bad I didn’t make it past the bench as I was really looking forward to the class. I just resting up and should still be able to take the kids for their play date with some of their best buddies and with friends of ours.

Thanks to Jari Love for helping me set up my station and sorry for leaving you to pick up after me since I had to leave unexpectedly.

If you enjoy reading my blog, please feel free to buy me a coffee or help with uninsured medical expenses.

Fingerprints, no more

It’s official; the chemo has basically destroyed my fingerprints to the point that I can’t unlock my devices anymore. Yes, it’s a common side effect of the drug I am on and is part of the Palmar Plantar Erythrodysesthesia that I’ve been getting on my feet in the first part of my. It’s now moving to my hands, and Taxanes (the type of drug I’m on) are particularly known for this effect.

Let’s see how often I lock myself out of my phone and apps because I need to remember my password and I have chemo brain.

A few days after I wrote this short blog, I came across “The 3,800 Club: The case of the missing fingerprints“, which delves into more detail of the reason the happens.

Get a laugh out of my odd predicament? You can always buy me a coffee because I can’t pay with my phone. Hehe!

More side effects

Here is an interesting video on how Herceptin works along with chemotherapy. Before Herceptin came along, I would have only had approximately 21 months to live.

While Herceptin and I didn’t get along on injection day, and add in my Paclitaxel chemo dose, I’m definitely feeling a ton of side effects today, including a splitting headache, upset stomach / GI tract, abdominal pain and heartburn. Not sure if it’s the headache and noise sensitivity, but I burst into tears while trying to have breakfast with the family.

My husband brought me lightly seasoned cucumbers as a small snack after breakfast, putting two aside without any seasoning, so that I could put them on my eyes, which were puffy from crying.

I’m now lying in bed with the dogs and listening to the rain outside. It’s somewhat soothing and making me feel better.

Are my blog posts helpful to you or someone you know? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

Scary reaction to Herceptin

Chemo + Herceptin drips went from 8h15 to 15h45. What a day! With this new part of my treatment, I’ll be getting drips 6 out of the 8 next weeks.

Unfortunately, within a few minutes, I started showing moderate allergic reaction symptoms to the Herceptin (https://myhealth.alberta.ca/…/medica…/Pages/conditions.aspx… ) even though I had taken an antihistamine as part of my pre-chemo medication and received an IV dose of dexamethasone (https://medlineplus.gov/druginfo/meds/a616022.html) prior to getting the Herceptin drip. With all of that, I shouldn’t have had a reaction, so when I started showing symptoms, the nurses immediately took me off the chemo and gave me Benadryl via IV (https://www.breastcancer.org/treatment/side_effects/allergic).

Pumping Diphenhydramine (aka Benadryl) directly into a narcoleptic’s veins knocked me right out!

After the allergic side effects subsided fully, they observed me 30 minutes and challenged my body with the Herceptin again. Thankfully, I didn’t react further. I’ll be under close watch for the next 2 Herceptin treatments. Usually, by the third treatment, the expectation is that I should have acclimatized to the drug and I shouldn’t have any more allergic responses.

The Paclitaxel (https://myhealth.alberta.ca/…/medica…/Pages/conditions.aspx… ) treatment was thankfully uneventful. As I was leaving, i met another wonderful breast cancer patient and we exchanged details. Hopefully we will have a chance to meet again!

Now, I’m home resting but am feeling exhausted, headachy and heartburn is kicking in.

I had dinner in bed and N came in the snuggle me for a few minutes. Now, my turn to get ready for bed too.

Do you think I could use a coffee break? I do! You can buy me a coffee here.