I have tried to write this post three times. Sigh, thank you for waiting on me to be ready. I’ve included ways to make chemotherapy better and an update on Danise Robinson’s pancreatic cancer battle. I always feel like I don’t have enough to report. But, it’s been two months. So, here we go.
A mama update.
She just finished round four of THIS chemotherapy. Her platelets were down, but they’ve improved with the use of cold-pressed sesame oil. Her weight stays just right above 100 pounds. She has residual leg pain from sciatica/neuropathy.
Although I have good updates, I want to be as honest as possible. This journey is anything but easy. In full transparency, I had to take a moment to return home and reset because I felt like I was drowning. I forgot to respond to emails, I forgot to send thank you cards, I lost track of really, everything, except her success. Again, cancer is a heavy diagnosis to carry. For loved ones, for the patient, for everyone involved.
And, after I rested, the road got rocky.
- Danise has sciatica, worsened by progressive neuropathy
- She’s had debilitating anxiety from some of the medications.
- She’s had people cry when they see her – a great confidence boost
- She continues to have fatigue.
- Appetite greatly varies.
- Hair loss was expected, but she’s met her match. But can I just saw how amazing she looks in hats? God took extra time on her face, I swear.
- If you haven’t heard back from Danise; don’t expect to. She’s tired. The best way to reach her? Through me.
- If you want to donate, no, she doesn’t have the link. We have taken as much off of her plate as possible. The finances of it all are stressful and overwhelming. Have you ever tried to carry a cancer diagnosis? It’s heavy. Donate here
Can you keep it to yourself?
Danise has lost four pounds since my last update and although this doesn’t seem like much, it’s the total 30 pounds, that makes it more drastic. Because her chemotherapy leads to a decreased appetite, worsened by fatigue, we’ve gotten creative with smoothies and hidden sources of calories. I’ve swapped Cheerios for Three Wishes (since cereal is a daily request) and making smoothies with protein shake as the liquid base to increase calories without volume.
The hardest part about a cancer diagnosis, I believe, is the fact that your body changes. And, that people can’t help but say something about it.
I’ve spent years working in healthcare and have become used to seeing people’s bodies change as they work through a diagnosis. This has given me the ability to refrain from comment, to hide my emotions, to put on a good face to prevent the embarrassment, shame and sadness that one feel’s from the acute awareness they already have to their changing body.
But, this is really hard, for the general population.
Recently, despite best intention, there has been a lot of commentary. To the point that I feel like I need to provide some insight and helpful tips. Commenting on anyone’s body is, frankly, inappropriate. Weight gain, weight loss, sickness, health, pregnancy, or miscarriage. There is never a time for it. Even with good intention, it is a very sensitive area to address casually.
5 comments that aren’t about someone’s body
- I am so happy to see you!
- I have missed you!
- Hi *big hug!*
- I am so happy we got together
- I want to hear all about you!
PSA: If someone’s body has changed. Purposeful, not purposeful, medical-related, or not. Please, do not comment. It helps no one. Put on a poker face. Or, kindly, remove yourself from the situation.
Mama’s Current regimen
Tuesday, we leave the house at 7:30AM and return around 4PM. Wednesday and Thursday we leave at 12PM and return around 5PM. We go to Vancouver on these days for a new treatment protocol with Dr. Parmar, a naturopathic oncologist who works closely with our Integrative Oncologist. They are long days. They all involve use of her port. 3 days of IV’s and needles, and then four much needed days of rest.
This new regimen was started at the end of June. Low dose metronomic chemo with Vitamin C prior, followed by LHRT and mistletoe. Last week she completed a fever treatment that raised her body 14 degrees over a 5 hour period. It was fascinating, intense, and allows the body’s immune system to strengthen and respond. Did you know that fever is a powerful tool?
The best news I have today, is that we have a CT pending in the next few weeks. This will give us the best measure of progress. We are asking for life-changing miraculous prayers!
Have a better chemotherapy day
Together, Mom and I made a list of some of things that have made chemotherapy less bad. Less shitty. These are our chemotherapy best practices. Advice that a conventional doctor may not be so forthcoming with. At least, from our experience. But, we’ve been blessed with an exceptional care team. A special thanks to Cindi B; nurse oncology navigator, where we received great ideas from Day 1 that really helped our foundation of success.
- Ask for Emend & Aloxi as pre-chemo drugs for nausea and vomiting.
- Use glutamine for the neuropathy that comes from chemotherapy (I’ve attached the basic supplements that have made a difference for us, here)
- Consider the Polite CBD tinctures & a temperature controlled vape for pain relief and sleep support
- Although she didn’t like the meals, Faeth therapeutics has a study with provided medical food with great outcomes for pancreatic cancer.
- The nausea no more patches are amazing – they’re made by Sunnyside Solutions.
- In her chemo bag we pack –
- No sugar added organic single applesauce packages from Costco
- BTR bars
- Simple Mills crackers. Simple starchy-like foods work the best.
- A recent find: E03, a protein drink with added omega-3 and no added sugar.
- An IPAD & headphones for watching Netflix
- A gel seat pad for the days when we drive often and she has more likelihood of sciatica flares
- A blanket and pillow for snoozing
That’s all for now! Thank you for your prayers and endless support. I hope that this info benefits someone else and saves them some of the trouble we went through early on. Forever the student, but I love to be the teacher, too!