The last couple of weeks have been a see-saw ride. Up one day, down the next in terms of next steps in my medical adventures. We have travelled from the place of 'slight progression of disease', in late July to 'No, not really, as overall size unchanged' on August first, followed by 'Well maybe', finally to 'Yes progression'.
It was not until August 29th we learned about 'Yes, progression' which put into context the discussions during clinical trial consults. It became clear the individuals providing the information believed we were aware of the current status of my health. More on that shortly.
Clinical trial consults on August 22nd included a brief stop at Radiation station. Trial has been open for a couple of years in eight centres across Canada, Kingston now joining in. Change in past view, which was radiation could not be used on the liver. With kind and caring compassion, I was advised by Dr. Allison Ashworth (who I love), I am not a candidate for this trial, having had radiation on my back in 2013, which would have included exposure to the liver, precluding my eligibility. Also, radiation is not being considered now as my overall quality of life not being impacted by disease. It will though, be kept 'in the bank' for future use if and as needed. Best course of action is to consider Chemo trial.
As we waited for the next consult, I felt a sense of relief at not being faced with a choice between the two options. It was made for me, just as I had prayed for - a sign, in a way I would understand, of which trial to consider.
We met with Dr. Jim Biagi (who I also love) at the Chemo Platform, who started the discussion by sharing he had reviewed my medical history and has heard about my case from others many times. He quickly moved to options available at this time (again, we were wondering why we were hearing about options when we were here to learn about the trial. Remember we were still at 'No, not really').
They included:
- Carbo (reduces fluid build up but doesn't help with sold tumours)
- Carbo Taxol (cocktail I was served during first phase of chemo 4 times over 4 months in early 2013)
- Weekly Taxol (last year's 5 month protocol with 17 servings of one drug)
- Clinical Trial - very excited about, have used in ovarian patients for a number of years with success to the point of it becoming the standard of care. It includes what's called a 'Parp Inhibitor' and they are anxious to get started. Sadly, there has been no progression in treatment of Endometrial in the last five years, to which I responded, 'Then let's get started!'.
- Watchful Waiting - which is what we have been doing for the past year. Remain mindful, have regular check-ins, leave things alone in the absence of symptoms.
Needless to say we got caught up in the enthusiasm about the trial and expressed willingness to participate. If you can imagine yourself in grade school, being so confident of an answer, you wave your hand violently in the air, almost coming off your seat in hopes of being asked. It's about how I felt. I even blurted out how I would like to be considered the first candidate.
My expectation of being provided with copious amounts of reading material while waiting to get on the train to Clinical Trial College was quashed when we were told he is only going to be meeting with the drug company that same afternoon. He would be away for summer vacation and while willing to have my regular oncologist provide me with further details, we learned later, he really wanted to be the one to personally take it to the next step. We agreed to set another appointment for the following week to review options with my oncologist and help make a decision.
It became clear how enthusiastic everyone was about the opening of this new trial.
We met with Dr. Francis on the 29th to review the previous week's travels through consult territory.
It just happened though, I had an appointment with my 'Symptom Doctor' immediately before my oncology appointment. It was at that stop on this latest adventure we felt like we'd been derailed by being provided with a copy of the cat scan results. It had the most complicated, medical terminology details of any scan I've received, making it hard to decipher. Bottom line was while it did confirm slight disease progression initially, the overall impression was 'Progression of metastatic disease in the liver' (I am deliberately omitting a few details). We were asked if scan results had been reviewed, agreed they had, but without such detail and we had not received nor seen a copy. It's times like these we need to remind ourselves we are not the experts, we need to stand back and look at the whole picture. Most importantly to reign in the imagination.
We left 'Symptom City' in a much subdued frame of mind, thankfully not being left waiting at the station for very long before heading in to see Dr. Francis.
She agreed she had not shared certain specific details of the scan but I can't recall, nor have notes as to why it was the case. My intuition says, it's because she was looking at the whole picture and, as such, was concerned about some of the changes but remains optimistic. She also concluded, the question remains 'Do we do something now.' Whatever we do, it should be now. Her message from Dr. Biagi was he wanted to start when he returns and we can expect to hear early next week. She too is excited by the clinical trial and highly encourages going that route as a first choice, followed by Weekly Taxol should the trial, for some reason, not be an option. I have made every effort not to become overzealous without more specific details of what the trial entails, confirmation of my eligibility, and being handed a ticket to get on that train!
Next up was an appointment with my family doc the next day, August 30th. She has remained my calm in the storm, my padding at the end of the rabbit hole, my overseer when the trails get overgrown with unknowns.
We reviewed the details of our latest adventures, and, sure enough, she already had copies of reports, scans and details and most willingly reviewed as much or as little as I needed to regain my perspective. I'm always filled with a sense of calm as she pulls her chair over, leans right into my space and with those totally focussed blue eyes, gives me the most rational explanation of any problem or issue of concern. It went something like this. We know this thing isn't going away, but in the midst of it all, palliative is becoming known as managing a chronic illness. The most important thing to remember and refocus on is how I am feeling - now - not comparing to anyone else, not reading into numbers, or any such diversions. She described much of what I have been working so hard on - getting up every day, reviewing how I feel and move on from there. Live every day as well as you can.
She also confirmed how any change, including the change in the denseness of the mass in my abdomen must be considered as bad (which Dr. Francis had confirmed the day before). It's unlikely, barring a miracle, any improvement will be experienced without intervention. It's not like this thing is going to get better on its own. True and I agree. She has heard of, but not experienced through her practice, any miracles, but does not dismiss the possibility. I shared my view of having a predetermined number of days, to which she responded we could have a good philosophical conversation some day as she had written a paper on the omniscience of God (all knowing) as it related to free will and other such details based on the book 'Paradise Lost'. Getting back on topic, we agreed to have blood work done given my ongoing sense of fatigue and weariness. It's a given my hemoglobin has always been on the low side, she reminded me it should be 120 but is ok with it being over 100. If it comes out at 90 she will not be happy. We left on the understanding no news is good news, but if any issue, I can expect to hear from her. No kidding, I remember the time a couple of years ago when she called me from the airport to advise me about the results of blood work at that time. Wow, what an angel disguised as a family doc!
By the time I got home there was a message from the Nurse Practitioner for my Oncology Team to call. After nearly 45 minutes on the phone, we were off on yet another adventure with the hope of directions being clarified on Tuesday, September 5th.
I needed to bring her up to date as she'd not been directly involved of late. She'd been on her own travels with others in Cancerland. What she did advise was the clinical trial is not opening for two months. Whoa, it felt like the see-saw firmly thumped the ground with that news. It seems like when clinical trials come along, especially one like this one, they get very excited and almost immediately start looking at every patient with a clinical trial lens, assessing their eligibility. Would she be a good candidate? Would she benefit from participating? Certain patients come to mind and it seems the enthusiasm takes over the details as they just can't seem to keep quiet about it. The comfort in that, I suppose, is being proactively thought about.
What I appreciated most about the conversation was being provided with an overview from an expert on how we move forward. She clarified she would discuss things with my oncologist in view of the news of the delay in the clinical trial. As well, standing back looking over my whole case, she's not sensing urgency to start treatment right now. She feels we have the time to review all factors and make a good decision in terms of next steps. After all, things could have been there for months and it's only now that we're investigating, we're finding something. As has always been the case in my adventures, the question is asked, 'When we do a test, what do we do with the results?'. And so, here we are. I was encouraged to remain optimistic, and once I pull out all my 'go to sayings' and beliefs we are in a good place. Make every effort to look forward to the future with a sense of wonder and surprise.
Friday morning I received a call setting two appointments for Tuesday, Sept. 5th with Dr. Martin, oncologist, followed by Dr. Biagi. The adventure continues. On that note I will sign off and wish everyone the best for the rest of this long weekend. May you enjoy good health and peace as we head into the beginning of Fall.
Until next time, with lots of hugs,
God Bless,
Liz
dobbsjones@gmail.com
"Prayers wrapped in faith and sent with love are the greatest gifts we can receive.'
p.s. A couple of readings from this week which just happens to address suffering:
Romans 5: 3-5 Not only so, but we also glory in our sufferings because we know suffering produces perseverance. Perseverance, Character and Character, Hope. And hope does not put us to shame because God's love has been poured out into our hearts through the Holy Spirit who has been given to us.
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