The Unexpected Journey

** After brachytherapy I must tell K about brachy on the way home, but, I think I will just close my eyes..snore, snore. woke up in the driveway. Walk into house. I should get online and tell T that I am fine, but, first, I will just close my eye for a minute. (3hrs later) I should respond to this text from 4 hours ago, but, first, I will just go to the washroom, and sit on the couch. Yawn, yawn. zzzzz (2hrs later) I should eat, then I will blog. Ate a perfect brat meal from Gwyn. Sat down, laid down. Snore, snore. (2hrs later), I should drink some water. Maybe a coffee for my headache, then I will log today. Snore, snore (2hrs later). Oh, hi T. Yup, I am doing ok. The gravol on top of the other meds and no sleep, is...

As is the pattern, Monday is always the down day, the trough day. It is when there are no steroids left. Today is no different. Body symptoms continue to progress due to radiation. Gyn-oncologist is pleased that all symptoms from chemo are minimal. In fact, my blood actually recovered this week, with all counts rising or staying the same. This news is wonderful. Fatigue is now a companion with naps more of a necessity, but, still not bad. An hour nap can do wonders. I sat in a pew yesterday for 2 hrs and paid for it with sore achy hips last night. Given hips are achy again tonight, I know it wasn’t just the pew. GI problems continue with a couple of days/nights in a row which were hard to take. A commode is now on loan in...

Okay, that sounds hokey, right? It’s a blessing, it’s so amazing: what drugs are you on, Jayne, to give thanks and see blessings during this time. I know there will be some who think that I am saying the cancer is a blessing when they hear that statement. Let me be clear: the cancer is NOT the blessing. The cancer is “s**t happens”. The cancer is chaos in life, a series of unfortunate events. God did not give me cancer. I am not going to pray this cancer away. I do not feel anyone else is either although I accept their belief that they can. Backtrack. We are coming up on the 25th anniversary of the birth and death of our twin daughters, Katherine Margaret and Veronica Marie. We were unaware they had twin transfusion...

Setting the stage: I am a lead in a technical area that started in 2011, new technologies (CyberArk), standards, major process changes for protection against privileged access attack vectors with scope for all servers, databases, networks and applications globally. Target technologies implemented early were in steady state, others still in the future. Due to outsourcing, new requirements had also resulted in an expansion of modules and methodologies for access to those systems. Any new technologies or support models such as cloud based services require full review and typically design for what was acceptable in the past is no longer secure enough. The space is new, busy & challenging. I am a recognized expert in the field. Staffing...

4th week of treatment is now complete: 19/25 radiation, 4/5 chemo and 0/4 brachytherapy. Looking forward to ringing that chemo bell next week! By week 4, the impact of the radiation is starting to be felt in a few areas. GI is getting ugly. Remember how the transition day was Monday from the constipating effect of chemo to the radiation effect of diarrhea. Each week it has moved back a day as the radiation effect compounds. This week, I went to bed wondering if I should take medication to assist with constipation, but, had a sense I might be ok. Sure enough, woke up at 4am and the bowels had a mind of their own. What followed was 3hours of transition. Ouch. Think bracing oneself for the next wave. Think breathing through...

Step 1 of the Brachytherapy treatments, after the education session, is the initial MRI. That happened this afternoon. I was curious about the usage of the MRI as it is recently included in the Juravinski treatment plan, and is not used in the same way in other locations. Here is a quote from a technical document that I found when researching the meds given. “The MRI is the best imaging modality for tumour visualization and assessment of tumour size which is an important prognostic factor and determination of treatment.” (source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4307629/). MRI uses magnetic fields and radio waves whereas CT scan uses x-ray technology. MRI has less long-term impact on the body...

I cried today. Not sobs of sadness….but that choking up of gratitude for the waves of kindness and simple generosity that surround me. This morning started early with looking forward to seeing my amazing friend CP. A friendship built through volunteering with United Church of Canada, youth ministry, family camp, women's ministry, spiritual practices, and our home base Five Oaks. A comrade who arrives with hugs, laughter and meaningful conversation that darts, dashes and flows like a babbling brook, and if it has been a while, like spring thaw dashing against the rocks, noisy and blustery and full of life. Years ago, CP and I shared a wonderful experience of bringing joy into people’s lives in difficult times – one of my...

As part of my treatment plan, I have Complete Blood Count (CBC) done twice a week. One is done on Monday for review by the gyn-oncologist for the go-ahead for Wednesday’s chemo. The other is done post-chemo for the review by radiologist oncologist. The lab runs like a deli meat counter. Arrive, get your number, sit, number is called, get served. The technicians are great. In & out in a matter of minutes, hardly feel a thing. Great attitude, friendly conversation. The frequency of the blood tests allows for monitoring of the two treatments impact.. The chemo, Cisplatin’s side effects include lowering of white and red blood cells. As external radiation continues to impact the hips and bone marrow, it will provide a compound...

I was having a manicure/pedicure this summer, treating myself during the planning phase. A very thin woman in her 60’s, requested a specific person to do her nail repair. She was willing to wait. The manager brought a cheap desk chair to the entrance. She sat, and then proceeded to catch our attention. Why? She was falling asleep. Hard & fast asleep, sitting in that crappy desk chair, in the entrance at the mall. She would startle, her eyes open, then sound asleep she would be again within moments. It was like watching a bobber, wondering if it would fall over. Later, when getting her nails done, she could barely stay awake, laying her head on the manicurist’s table. I’m not sure when I realized how ill she was, but it was...

Today, I give thanks for generous spirits. Margaret & Charles Juravinski who with luck and business acumen went from poverty to wealth, selling Flamboro Downs for $75million. They gave $43 million for the creation of the cancer centre, and upon advice, made the donation public hoping others would be encouraged to give and in so doing, created a place where I can be well. Generosity witnessed in the centre, each and every day: Volunteer drivers who sit all day, awaiting their travellers to finish their treatment. The coffee, juice and cookie cart volunteers who offer everyone a cookie and a smile. The used book tables displayed nice and kept well. The knitted & sewn caps offered free to anyone who needs one. Generosity offered to...

The 25 external radiation and 5 chemotherapy treatments are all getting the cancer ready for the knockout blow by the 4 high-dose rate brachytherapy treatments. Last week, I had my education session with this team. CW, who is also a nurse, was accompanying me which was awesome. This training session is new and under evaluation. To be fair, once you start to hear about brachytherapy it is a pretty squirmy idea. Being able to place yourself inside the room, having handled the equipment, and gotten to know your tech helps to reduce the heebee-jeebees. First, what is brachytherapy. It is an internal radiation where a radioactive source is placed in or beside a tumour. It can be implanted and left inside such as in some prostrate...

Well, week 3 is done! 15/25 external radiations, 3/5 chemos, 0/4 brachytherapy’s. I am sooo looking forward to a long weekend with a break on Monday. As shared earlier, radiation has a cumulative effect. So, impact to things like the bowels, bladder, hips, fatigue are slowly creeping up. Whereas I walked up two flights the first week, today I knew to take the elevator. The original “flip” date from the impact of chemo to the impact of radiation was Monday, then, it was Sunday. This week it was Friday…without ever really seeing the constipation impact of the chemo meds: a sign the radiation is kicking in. This impact is to be expected, and having said all that, I am doing fabulously. Two people clanged the radiation bell...

Humour me on the following questions: Do you know what chicken pox is? Do you know there is a vaccine? If you have a child, did they get the vaccine? Do you know what shingles is? If you are over 50, do you know there is a vaccine available for you? Do you know what a PSA test is? Do you know what HPV is? Do you know there is a vaccine for it available to men & women, up to age 45? Do you know there is a test for high-risk HPV available for women? I’m going to guess that most people reading this know what chicken pox is. Odds are you had it. Your mother may even have been taken to a house that had chicken pox in order that you would get it before you went to school. Some of you had mild cases, quickly gone. Others were maybe...

Wow, can you believe it. It is the midpoint of the daily treatments. 3/5 chemo’s and then 13/25 radiations, and soon will be starting the 4 brachytherapy treatments I posted The Divine Miss M’s “Friends” video today in thanks and celebration of those who have helped me through to here. The friends like J who helped me process through the days when I didn’t know what was ahead. Balancing me. Listening to my vents. Checking in. Folks like MB, who helped me process work items, dumping my frustrations so that I could move into plan to get a team from fear to performance in trying times. J, who listened to me swear. DG, BWD SF JK who came over for a wine night helping me learn how to tell others. SC who popped in to talk about...

I’ve been struggling structuring today’s notes about financial implications of cancer to the vulnerable. First, I am a financially-stable Canadian with a fulltime job with great benefits in southern Ontario. I’m pretty lucky. I was even able to book massages paid for by benefits during the stressful planning time. It’s different for those people who parse part-time jobs without benefits or are seniors with limited funds. I’ve had access to quality health care throughout my life. My parents remember not having it and enforced the value of it to us. My American friends and family have shared their experiences of insurance choices, deductibles, coinsurance, health care bills, private hospitals. They make my head spin. I think of the...

When I heard chemotherapy, loss of hair wasn’t the first thing I thought about, but it definitely was up there. I’m not vain about my hair. I am embarrassed by my scalp. I have had sebaceous cysts all my life. My scalp has scars from removal. I have lumps and bumps. I would not be one of those women with gorgeous bald heads. I gave a small sigh of relief when I heard that I would not lose my hair. I approached my hair dresser for guidance. Colouring after treatment started would be a bad idea, so, highlights went in and an easy cut was completed. I have a mass of thick, straight, coarse hair. We joked that I met get a curl from the chemo. I wondered about other hair. Psst. in case you didn't know, some women have to...

It’s Friday afternoon in early August. Now, anyone in HR or leadership knows you do not want to give bad news on a Friday – it’s bad practice to leave people stewing over a weekend with no one to chat too. I had phoned my gynecologist a few times earlier in the week, seeking the results of my cone biopsy. My results from pap, then colposcopy, then plan for treatment had all been phone calls, one during an off-site in Milwaukee. I was strong and ready for it. Then I got the results. Then I wasn’t ready. Then Friday wasn’t a good day to get the news. The “c” word sat me back on my ass. I went into analytic mode. Sitting at my desk on the phone, asking questions of the gynecologist. He answered. He apologized for sharing by...

I am not someone who likes to be dependent on folks or ask for assistance for personal items. I have learned from some of the best in leadership and have adapted my own style building strong teams; but….if it is personal to me, odds are I am doing it. So, how does that correlate to the topic at hand today, the people who wing me back & forth from Juravinski each day. I can tell you that I did not want to accept drivers. I am a good driver if more cautious than I was in my youth. I think nothing of driving to Wisconsin or East Coast. I am strong. I should be able to drive myself. Others with other treatments drove themselves. It is only an hour to an hour & a half door to door. Seriously. I gave lip service to accepting drivers...

Way back, after meeting with the radiation oncologist & nurse for the first time, they told me that I would need to have a planning appointment in the next few days with the radiation technologists before the treatment could begin. I was disappointed. I didn't want to come back again. It was a sign of the attention to the patient’s treatment load that the nurse disappeared and was able to squeeze it in that afternoon rather than the original date so that I could avoid the 2+hrs in transit. Oncologist covered short & long-term consequences and management of symptoms. A key action is skin care including the liberal application of glaxal-based moisturizing lotion morning and evening to the entire pelvic girdle. Wearing of 100% cotton...

When you have long days at hospital, there are certain things that fit into the classifications of want, need and desires. I had been using my backpack, but, each bag that I had was designed for travel. So built to be thrown around. Strong, but that strength added unnecessary weight to be carried, a challenge knowing fatigue was in the future. Plus, it was a pain to search for with IV connected to one arm. I trimmed down items to "need" Oh, how Mary Poppin’s carpet bag would be handy. If you are 50, you likely remember the wonder of it, where she just reached in and pulled out item after item. A delightful bag bringing joy to the children, Michael & Jane, with eyes popping, doubtful looks and giggles. As of yesterday...