It’s been quite a while since I updated my blog, the reasons for which are below…
The past two and a half months have been among the most difficult of my entire life. On October 23rd Tina and I met with my oncologist, Dr. Phinney, to get the results of the latest CT scan, which were unfortunately anything but good. My cancer was fighting back with a vengeance and the FOLFIRI and BBI608 was no longer working.
The CT results were very sobering: As for my lungs, the largest tumor in my left upper lobe, which appeared for the first time in the scan I had in August, decreased in size by about 20%. Unfortunately, all the other tumors and nodules grew, many even doubling, or more, in size. I also had several new nodules that measured as large as 1.9 cm, which were not present in my scan two months prior. The scan of my abdomen and pelvic area showed that the two lesions on my liver, one of which was first seen in the August scan, had both grown significantly, almost doubling in size. I also had two new lesions that have formed on my liver, which measured 1.0 and 1.2 cm in size. Lastly, I now had a couple of lymph nodes that were affected, the worst one measuring 2.1 cm, with subcarinal lymphadenopathy present.
Because of these results, I was immediately dropped from the clinical trial and was told that we would not be continuing with the FOLFIRI. Having exhausted all of the first line treatment options and a clinical trial, and knowing that second line treatment wasn’t available, we briefly discussed the last two options of conventional chemotherapy that were available. After doing so, Dr. Phinney recommended that I go to the Karmonas Cancer Institute in Detroit, Michigan to see what they had available in the line of a clinical trial, as they are one of the largest hospitals in the country with the most concurrent clinical trials running. At this point Dr. Phinney told me that, because of the aggressiveness of the cancer, he believed that I was looking at six months to a year to live. This was down from the three to five years I had initially been told just about a year before.
After we left the Toledo Clinic Cancer Center on the morning of October 23rd, I completely understood what Dr. Phinney had told us, but it still took a full day or so for me to fully comprehend what those results meant. The fact that my doctor believed that I was looking at quite a lot less time than originally thought did not really hit home for me for even longer.
After about five weeks of waiting and then running back and forth to Karmanos for the initial consultation and several rounds of testing, we were told that I was being offered to join a clinical trial. While I had some real concerns and an overall bad feeling about it, I signed the paperwork, partly because there wasn’t anything else available for me that made sense and mostly because I could see the hope in Tina’s eyes.
Later that same day I told Tina that I had signed the paperwork for her, and explained my concerns and bad feeling. The next night Tina called me from work to tell me that she had spoken to a good friend and realized that she needed to be there to support me, not push me into treatment. She then told me that she would back me on whatever my choice was, and wanted me to do what was right for me, not her.
During this time I also began to have a real problem with a very persistent and productive cough. I went through a couple rounds of antibiotics and steroids and didn’t see much improvement, so my pulmonologist, Dr. Ruiz, scheduled me for a bronchoscopy on November 21st. Prior to the bronchoscopy I had another CT scan, and Dr. Ruiz than looked at my lungs to see if I had an infection or fungus growing, and also get a couple of biopsies. The end result was that I did not have an infection, there was no fungus, and the biopsies came back as colon cancer, thereby proving the stage four diagnosis.
I met with Dr. Phinney again on December 5th and discussed with him at length, over the course of more than an hour, the options that I had:
- The clinical trial at Karmanos, which had never been tested on humans and I was told had about a 10-15% chance of working
- Lonsurf, which is an oral chemotherapy, that I was told typically had about a 20-25% chance of working, but probably significantly less for me
Dr. Phinney recommended the clinical trial as the best choice, telling me that he felt like it had a better chance to help then Lonsurf. He also told me that the results of the CT scan done during the bronchoscopy showed “significant and aggressive growth” in my lungs when compared to the CT scan on 10/22, just about a month before. He then offered that, without chemo or a treatment that worked, he thought that I had about three to six months to live, though it could be quite a bit less. He then added that I could made it as long as a year, because other than the cancer affected organs I was in good general health, but he wasn’t very hopeful. I thanked him, left to head back to work, and really began to think everything through.
I spoke with an incredibly good and spiritual friend from church, Paul Beauch, the following morning over breakfast. I then spoke with my psychologist, who is a cancer survivor and specializes in working with terminally ill people near the end of their life, during lunch the same day. I told both of them the same thing that I had told Tina: I don’t want to go out feeling miserable from chemo, especially with the real likelihood that it wouldn’t do much to help me. Both Dr. Phinney and the doctor at Karmanos had already told me that even if we found a chemo that slowed everything down, we were probably realistically looking at extending my life by a matter of weeks or months, not years.
So, that night and over the course of the next few days, I told Tina, my kids, parents, and a few friends what I had decided, which was to not do any treatment. I wanted to feel as healthy as possible for the holidays. I wanted to be my normal, lighthearted and happy person with my family and friends. I wanted to enjoy my life, choosing quality of quantity. It’s not that I was quitting the fight, it was that I was changing what I was fighting for.
I did say that I would be willing to reconsider Lonsurf after the first of the year, when the holidays were over, and last week I agreed to give it a try. I just spoke with CVS specialty pharmacy to complete my twenty minute intake over the phone, so they can ship out the prescription, which has already been approved by the insurance company. I will receive the Lonsurf this Friday, January 19th, and will likely start it the following day, after I speak with Dr. Phinney. Dr. Phinney, Tina and the rest of my family know that I am willing to stick with Lonsurf as long as the side effects aren’t too bad. If they do end up getting bad, or my health continues to decline and we are seeing no momentum, they all know and understand that I will quit taking it.
I can honestly say that I am feeling a drastic difference in my breathing and have had much more difficulty in the past month or so, as a well as a very heavy and productive cough. So much so, I am doing breathing treatments with my nebulizer at home at least one time daily, and I have also been using my inhaler at work almost everyday, sometimes more than once. I have also been taking a new cough medicine with codeine in it at night, just to help me not cough as much, as I was waking up multiple times nightly. For now, everything else with my health is good, and I am not in any pain or having any other difficulties.
Tina purchased Essiac tea and CBD oil for me, both of which I started about two weeks ago. We aren’t real sure if either is going to help, but at this point, why not try it?
I have another CT scan scheduled for this Friday, January 19th, and will have the results early next week. Because it is not going to be anything good, and we all know to expect that, I am going to call Dr. Phinney and he is going to explain the results over the phone (I’ll already have them via the My Chart portal from Promedica on Monday or Tuesday).
For now, I am going to see how Lonsurf treats me and get the rest of my affairs in order, for the inevitable outcome. That includes as much time with my family and friends as I can manage, continue working for the foreseeable future, and we have planned a couple of vacations for Tina and I to get away and spend some more uninterrupted time together. I may not have a lot of time left, but I am for certain going to make the best of what I have.