Role reversal

March 30, 2023 / edebock / 10 Comments

It’s been quite awhile since my last health update on here, so for those of you who follow our cancer journeys, I thought it was about time for another one. I say journeys because you may remember that, in addition to my cancers, hubby was diagnosed with prostate cancer last summer. Fast forward eight and a half months and as of this week, he no longer has a prostate and as far as we know, he no longer has cancer!

Surgical removal of the prostate, in spite of the fact that it has some negative effects, is thought to be the best choice for long-term survival, but when we saw the urologist in August, he warned us that many specialists consider 70 to be the upper age for performing that surgery. At 73, Richard is otherwise in excellent health and physical condition, so he was referred to a specialist who does robotic prostate surgery, the most advanced treatment option available, with the hope that he would agree to do the procedure. Had he not, there were several other options that we would have had to consider.

On October 31, after the appointment was delayed by a few weeks due to us both having Covid, we finally met with the surgeon. He had clearly reviewed Richard’s case and had absolutely no qualms about performing the surgery on someone in his physical condition. As Dr D said, we could easily look around his waiting room and see men a decade younger than Richard who weren’t in the shape he was in and who would be much higher risk. We were told at that appointment that the wait time for surgery would be five to six months.

Almost five months later, we arrived at the hospital in Edmonton at 5:30 a.m. on Monday and by noon Richard was in the recovery room with no prostate and hopefully no cancer. After one night in hospital, he was released the following day and I suddenly went from patient to caregiver! Total role reversal!

Over the nine and a half years since my first cancer diagnosis, Richard has stood by me and provided excellent care when I’ve needed it. He’s accompanied me to countless specialist appointments and seen me through numerous scans, two major surgeries, 30 radiation treatments, and 14 PRRT treatments. Now it was my turn and I wondered how I would do! Thankfully, he’s been a model patient and things have been going well so far.

The biggest challenge facing us when we got home was the fact that he has a catheter which won’t come out until April 6. The first evening, as we figured out how to change from day bag to night bag (including cleaning the day bag and tubing for the next day’s use), we were both all thumbs. Once we figured everything out though, he’s been able to manage it with minimal assistance from me. A bigger challenge for me might come when our snow finally melts and I’m suddenly in charge of the early spring yard work that Richard usually takes care of! He has very clear instructions not to do any heavy lifting, snow shovelling, or lawn mowing for six weeks. At that point, we’ll also see the surgeon for a follow-up appointment. It’s then that we’ll receive the pathology report and know for sure that he’s cancer free.

And what about my cancer journey? Since early December, I’ve had a CT scan and three different PET scans. Two of those were part of a study. All four scans agreed… no change; no growth or spread. As far as we can tell, my neuroendocrine cancer (NETS) continues to be stable. We’re somewhat puzzled by the fact that a couple of markers in my blood and urine that are specific to NETS have been climbing, but since I’m having absolutely no symptoms, we’ll simply continue to monitor those with more frequent testing. Last week I had my annual check up with the wonderful surgeon who removed both of my other cancers and the good news is that there is no sign of recurrence of either one of those. This is as close as I’ll ever get to a clean bill of health, so I’m in good shape for my present role of caregiver instead of patient!

Stronger Together text with arrow. Corona virus - staying at home print.

NET Cancer Day 2022

November 10, 2022 / edebock / Leave a comment

Once again, today is Worldwide NET Cancer Day, a day set aside to increase awareness of neuroendocrine (NET) cancers and to promote improved diagnostics, treatments, information, care and research. As a patient who has been living with this cancer for the past nine years, this is, of course, very close to my heart.

Once again this year, we are urging people to

Know the symptoms.

Push for diagnosis.

Less than 30% of neuroendocrine cancer patients receive a correct diagnosis the first time they reach out for help. In fact, it often takes five to ten years from onset of symptoms to correct diagnosis. During that time, of course, the cancer quietly spreads.

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Here are some facts about neuroendocrine cancer:

NETs are a unique group of cancers that arise from neuroendocrine cells and can be found in many organs of the body.
NETs generally affect people over the age of 50, but not always.
Symptoms of NETs vary and are often non-specific due to their ability to secrete an excess of different hormones.
Symptoms depend on the organ where the tumour is located and may include abdominal pain, diarrhea, nausea and vomiting, weight loss, skin flushing, chest pain, coughing, wheezing, shortness of breath, and/or back pain.
As a distinct class of tumours, NETs require specialized tests and treatments.
NETs are often found unexpectedly during unrelated medical procedures or imaging tests.
NETs are the second most common cancer of the digestive tract.
Gastrointestinal NETs are often found in the appendix, colon, and rectum, but can also affect the stomach and small intestine.
Lung NETs comprise 20 to 25% of all invasive lung tumours.
The incidence and prevalence of pancreatic NETs (the form of neuroendocrine cancer that claimed the lives of Steve Jobs and Aretha Franklin) have been steadily increasing over time and now comprise about 7% of all pancreatic cancers.
Merkel Cell Carcinoma, a rare skin cancer, is a form of neuroendocrine cancer.

One of the most important things I’ve learned since my diagnosis is how important it is to advocate for yourself. Know your body. Know what’s normal for you. Pay attention when something feels off. Take note of unusual symptoms and talk to your doctor as soon as possible. If you don’t get the answers you’re looking for, PUSH! Don’t give up.

Thankfully, at this point, my cancer is stable. Constant surveillance is important though, so I’ll be having CT scans and other tests again next month. In the meantime, since hubby’s diagnosis with prostate cancer this summer, my health has temporarily taken a back seat. Now that his name is on the five to six month waiting list for robotic prostate surgery, we’re breathing a sigh of relief and getting on with life. Though there is no cure for me, I continue to trust that I’m not dying of NETs, I’m living with it!

Here we go again!

August 17, 2022November 8, 2022 / edebock / 10 Comments

We were camping almost nine years ago when my doctor called to tell me that I had cancer. The news was completely unexpected and, in that moment, our lives changed forever. We were camping again this summer when hubby’s urologist called to tell him that he has two different kinds of prostate cancer, so here we go again!

A recent biopsy took 12 tissue samples from Richard’s prostate. Two of those, taken from one side of the heart shaped gland, showed a low-risk, non-aggressive cancer that is common in older men and usually requires nothing more than surveillance. Unfortunately, one sample from the other side proved to be a somewhat more aggressive form. According to the Gleason score, a scale used to evaluate the grade of prostate cancer cells, it’s a medium-grade cancer meaning that treatment ought to be considered.

There are several possible options. Surgical removal of the prostate, in spite of the fact that it has some negative effects, is thought to be the best choice for long-term survival, but the urologist warned us that the maximum age for a radical prostatectomy has always been a matter of debate and many specialists consider 70 to be the upper limit for performing this surgery. At 72, Richard is otherwise in excellent health and physical condition, so he has been referred to a specialist who does robotic prostate surgery, the most advanced treatment option available. We are praying that he’ll be approved and that the procedure will go ahead. If not, we’ll have to consider other options.

Over the past nine years, we have learned many things. The word cancer, itself, isn’t as scary as it once was. Though not to be taken lightly, it isn’t necessarily a death sentence either. We’ve learned to live life to the fullest and to consider every day a gift. We’ve learned the importance of living in and enjoying the moment. We’ve learned that a positive attitude makes the fight easier and adds to the quality of our days. We’ve learned not to worry about things that haven’t happened yet. As Matthew 34:6 says, “do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” We’ve learned to focus on the things that are important in life and to let go of things that drain us for no good purpose. We’ve learned that there can be joy in the midst of challenging times. These are all lessons that we’ll take with us as we embark on this next journey.

Ultimately, we know that we have a God who walks this pathway with us and promises to take care of us. “Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

images As always, the blog will be about more than cancer, but from time to time I will be using it to share progress reports. The only difference from the past will be that now I’ll be reporting on both of us!