Reality and adjustments

Posted on: Wed, 08/22/2018 - 17:14 By: akpratt
Lonely tree standing out against a blue sky

When people start saying "I was wondering how you are doing." It's probably time to put fingers to keyboard again. Yvette and I have been working through Acts in our morning time with God. And it is amazing to see the growth and support of the early church in the face of adversity. Some of that adversity is internal and some of it is external. Peter wrestling with the dietary laws that he grew up with. Paul wrestling with circumcision for Greeks. Persecution by the Jews and the Romans. Through it all the church grows and becomes this amazing witness in the world for the Good News. Christ saves. Your support and prayer helps me to feel this amazing witness of the church.

After a while the "cancer" novelty wears off. After a while you get tired of the constant appointments. After a while you get tired of feeling like crap most of the time. And then you look ahead and see that the rest of your life might well look like this.  Or worse. And it isn't good. The emotional roller coaster of cancer treatment is one of the most difficult things to articulate. One day everything is bright and rosy. The next is the darkest valley I have ever walked through. I question God, my life and everything in it. I'll tell you what is happening and then come back to that theme.

Let me clear up the saga of the back lump first. I finished the course of antibiotics on a Thursday and wasn't very happy with what seemed to be happening. On Monday morning I was standing in front of the mirror palpating it when I realized that the goo running down the mirror was from the lump. So back to Emergency with a side trip to my family doctor to have it looked at again. Five hours later. I was definitely not priority on a busy Monday in ER, I had the lump drained again. Aggressively. And I had prescription for another round of antibiotics - a little bit longer and a little bit stronger. And today you would be hard pressed to tell where it all happened. Cleared up nicely.

July 29 - my meeting with the breast surgeon - was a funny day. It started in a quick meeting with Dr Janzen. She told me that she was scheduling me for Day surgery on August 30. It will be a bilateral mastectomy. In other words both boobs go at the same time. It will make the surgery a little longer and it will make recovery interesting as I will have limited use of both arms for a few weeks after surgery. The only real question that remained was what was going to happen to the lymph nodes leading up into the armpit.

That question would be resolved by the ultrasound that was scheduled next. The technician did a very thorough job comparing the previous ultrasound step by step and talking about what she was seeing the whole way through. Unusual and very nice. As I came out of the room, Dr Janzen asked if I wanted to stick around for a few minutes and get results rather than wait for a phone call the next morning. "Well yeah!" So I sat in the waiting room doing my crossword and listening to the bustle of the breast cancer diagnosis hallway. I saw Dr. Janzen talking to an elderly couple. She grinned at me around them and gave me a big thumbs up. Minutes later she waved me over and told me they were just going to take the lower lymph nodes, the so-called "sentinel nodes." they had found nothing in the lymph node ultrasound to make them suspicious that it has metastasized. The nodes will be biopsied and if they happen to be positive - which no one expects they will be - the surgeon will go back and take the rest of the lymph nodes.

Things were rolling. I was scheduled for a breast surgery teaching session. Normally this teaching session is done with a small group of women. As they only see four or five men a year I got the physiotherapist and nurse all to myself.

The physiotherapist was extremely well organized and along with walking me through a booklet designed to give me a general idea of what to expect physically she also gave a series of exercises to do to reduce the possibility of lymphedema and to promote good healing. Her final act was to measure my arms. This will allow comparison on followup to see if there is swelling development or abnormal pulling of muscles.

Next I met with a nurse to learn the "ins and outs" of looking after myself before and after breast surgery. Lots of questions later I feel like I have a bit of a handle on what is happening. There will be nuclear medicine involved again to help them locate the lymph nodes for removal. Perhaps the strangest part was the discussion about drains. It isn't clear whether or not I will have them but just in case I got the full meal deal on how to look after them. Walking around with a couple of tubes in my chest draining into little suction bulbs just doesn't sound fun. At least it isn't an ostomy bag. I was advised that whatever I do, do not attach them to my pants. It just gets really painful if you drop your drawers. I guess I'll find a way to connect them to T-shirts.

As the nurse went through my medical history she asked if I had been scheduled to meet with an anesthesiologist. I told her that I hadn't but that there was kind of a red flag waving in my mind. The only issue that Dr. Janzen had raised was that dates and day surgery were dependent on the anesthesiologist giving me a green light.  The issue of course is that I have a big fat tumour in my lungs. There was apparently an anesthesiologist in the hallway who wasn't super busy so the nurse went off to find him and convince him to see me to put that worry to rest.

As the anesthesiologist took another in-depth medical history, I got to see my tumour on the original CT scan. He actually pointed out some of the interesting points. And I learned something. Did you know that the right lung has three lobes - upper, middle, and lower? But the left side only has two - upper and lower - to leave room for the heart.  I didn't. My tumour rests in the middle lobe on the right. After our conversation he gave the green light for the day surgery and I was released to think about it all.

The other side of the tale is the lung cancer. After an in-depth interview with my Astra-Zenca nurse case worker I was approved for compassionate access to Imfinizi. The tears flowed and once again I realized how God provides. I will get my first infusion after the breast surgery on September 7th. As I read through the product monograph this morning I was reminded that this is still an experimental drug. There is no data yet on how this will affect 5 year survival rates because it hasn't been around for five years. It appears that I can expect it to double or triple the time that I have left. There are a few reports of complete remission.

There is good documentation on the Imfinzi side effects and they appear to be things that I might experience without the drug anyway. For the most part they are managed with corticosteriods and by interrupting the treatment protocol to allow the effects to pass. There will be a lot of monitoring with xrays, CT scans and regular blood panels. I am scheduled for 24 treatments - one every two weeks for the next twelve months.

As planned I met with both my oncologist and with my radiologist on the 15th of August for a six week followup to the chemo-radiation treatment. My expectations were high for some sort of progress report. I was hoping for "The treatment has been effective." or at least "It looks like it is all working." Both were very positive and pleased that my lungs were clear and I seemed to have responded well to the treatment so far. But no indication of whether it was working or not.  My radiologist referred to the Xray taken the previous day as a baseline for future treatment. He then told me that his work with me was finished. It was kind of an awkward transition. Normally at this point in the treatment of lung cancer the oncologist fades into the background and the radiologist monitors the tumours watching for recurrence or spread. With the new immunotherapy treatment the reverse occurs. So he said to say hi if I see him in Lowes or in the hallway but our appointments were done for now. It sounded like this was the first time that he was bowing out of the program with a patient.

My appointment with the oncologist was very forward focused. After his examination and advice on how to deal with the cough and poor air quality in Vancouver right now, we setup appointments for comprehensive pretreatment start blood work and an appointment with him and confirmed the start of the Imfinzi treatment. Somewhere in here there will be another CT scan to set a new baseline for the treatment as well.

I have been doing some web work. Consolidating clients, making arrangements for some to move on, and a few projects that have been waiting for some attention for awhile. In some ways it feels good to be back at it, and in others it is frustrating as things that I used to find simple to do just aren't. Maybe it is chemo-brain. Maybe it is just that I have a lot of distractions and can't put the directed time in that I'm used to. Maybe it is just that I have been away from it for a few months and the lack of practice makes it hard. I have a few cheatsheets that are well thumbed and I'm never afraid to google for answers as needed. I'm still not ready to take on another big client but I'm hoping that sometime in late fall that will happen.

As I write this I'm experiencing the first week in many months that I don't have medical appointments scheduled and to say that it feels strange would be an understatement. On the other hand there have still been things to do. Following up by phone with my dietitian to make sure that I have stayed on track with weight and diet. And then there was trying to get some detailed information on Imfinzi which took a series of phone calls to a variety of people. It seems like a never-ending stream of constantly changing things to do. Lists, calendars, phone calls, texts and emails.

To return to the theme of emotional roller coaster, last week I had a particularly rough week. A tale of tragedy that unfolded in the online cancer community that I have become a part of. And just the unmet expectations in my doctor's appointments all combined to create the perfect storm. Depression hung over me like a dark cloud. And then the Lord gave me this from "The Message" in Psalm 51:10

God, make a fresh start in me,
    shape a Genesis week from the chaos of my life.

I realized that the still small voice of God was speaking to me. God grants us forgiveness in the midst of all our doubt and unbelief. As I have reiterated time and time again as people have written and spoken to me, prayer makes a difference and I feel that prayer, that support. My life feels chaotic at times but God uses that chaos to shape a new creation, to give me a fresh start.

The direction and destination of this journey aren't clear to me yet. My greatest prayer would be that God day by day make my way forward clear to me.