It’s Been a Rough Couple of Months

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.

So Much for a Quiet Weekend

I was looking forward to a nice, quiet weekend filled with lots of rest, some time spent on getting some much needed paperwork done for my durable power of attorney and other advanced directives, and some fun at my nephew’s football game. This was my first weekend in several weeks where I had both days off and was really excited. Friday night and yesterday all of that came true; but today was different.

I have always had very sensitive hearing, and can hear things most others in the room cannot. For example, I can be in the living room watching TV and still hear if the sink or tub is dripping because they were left on, two rooms away. Because of this, one of my biggest irks is hearing our cats licking themselves. I know they do this to clean themselves and understand that it’s normal cat behavior, but it drives me crazy.

Today when I got up I went to the living room and turned on the TV to watch a few shows I had on the DVR. For the next 30 minutes I heard multiple cats licking themselves in the kitchen, and I quickly got frustrated. Usually smacking the arm of my leather recliner, or clapping my hands, makes them stop. But today they kept going and I finally yelled at one of the cats that I could see to stop.

At that point Breanna, my eighteen year old daughter, came out of the kitchen and loudly said “they need a bath.” I replied that I didn’t care and that I just didn’t want to hear it anymore, to which Breanna yelled at me. Yeah, you guessed it, that set me off. I loudly told her that she had no right to yell at me and that I didn’t know what made her think she was in power or control over me, but she had it all backwards.

She stomped out of the room and yelled that she was leaving, to which I replied “well, bye” in my best Tombstone voice. She left for about 45 minutes and then came back, for a brief moment, until both she and my son David left together (Breanna doesn’t drive but David does so she was obviously looking for a ride).

I hope that I can turn this day around because this is my six day work week, starting tomorrow, and I really could use the rest and relaxation today.

The Doctor has Spoken

Tina and I met with my oncologist, Dr. Phinney, this afternoon and got his take on the scan results that Promedica so kindly released to me last Wednesday. The long and the short of it is that it is obviously a setback and, while my interpretation of the results was pretty much spot on, we have a few different options to look at.

Dr. Phinney has already reached out to his colleague Dr. Pelley, the doctor that we met with at the Cleveland Clinic Cancer Center last year for a second opinion. Dr. Phinney has asked Dr. Pelley if the Cleveland Clinic has any clinical trials that I may qualify for, and we should hear back from him within a week or so.

If that doesn’t pan out, Dr. Phinney had a couple more ideas. The first is to switch my chemo regimen from FOLFOX to FOLFIRI. FOLFIRI has two of the same main drugs as FOLFOX, except instead of Oxaliplatin, it has Irinotecan Hydrochloride. The Irinotecan Hydrochloride has a higher likelihood of nausea, diarrhea, and hair loss and, while I’m not super excited about any of those side effects, I don’t have a lot of choice in the matter. Besides, there’s medication that I can take for the nausea and diarrhea, and I had a period of my life not that long ago where I shaved my head bald (with a razor) and liked it.

Dr. Phinney also has a clinical trial running in his office right now that is two armed, which means 50% of the patients get FOLFIRI and 50% of the patients get FOLFIRI and Napabucasin. The catch is, it’s a blind study, so if I am accepted into the study, I won’t know if I have been randomly selected for the FOLFIRI or the FOLFIRI with Napabucasin. I am supposed to get a call in the next couple of days by the researcher in Dr. Phinney’s office to get started with the paperwork and blood work and to determine if I qualify for the clinical trial. There is a great deal more information on the clinical trial that I will be trying to qualify for here.

In the end, it makes sense to get into the clinical trial at Dr. Phinney’s office, because even if I get randomly drawn for just FOLFIRI, we were going to try that next anyway. Dr. Phinney also said that if Dr. Pelley gets back to him with a clinical trial that he thinks would be better than the clinical trial that Dr. Phinney’s office is running, Dr. Phinney would recommend that I try to get into that one instead. We’ll probably know more about that in the next week or so.

So, the news is about what I expected after reading the scan results last week, but we have more options available than I ever thought we would. While this isn’t the way that I wanted this whole process to go, we aren’t sinking yet, and I am going fight with everything that I can to kick this cancer’s ass.

Oh, and a bit more good news: the clinical trial at Dr. Phinney’s office requires that you not have any chemo for at least three to four weeks, so I don’t have chemo this week, in hopes that I qualify for the clinical trial.

Lastly, I want to thank everyone for the thoughts, prayers and overall support through this whole ordeal, and especially this last week. I could never get through this on my own, and I cannot find the words to explain how grateful I am.

Not a very Good Night

After sleeping for twelve hours Saturday night, and not getting up until noon on Sunday when Tina woke me up, I ended up falling back to sleep watching TV and slept for another four hours. Tina woke me up coming into our bedroom and 9:00, so I got up and made myself a sandwich and went back to bed. About 10:45 Tina was trying to sleep next to me, but knowing that she wanted our youngest daughter Bree to sleep with her because of the quick trip they had to the emergency room on Saturday due to Bree having an allergic reaction and not being able to breathe, I went downstairs and told Bree that she could sleep in my room and I would sleep in the recliner in the living room.

This prompted Bree to go on a loud, cussing tirade about how she was playing a game on my PlayStation 4 and had to stay up late to do laundry. I tried to remain calm but the louder that she got and the more she dropped the “f” bomb, the more angry I got. Fueled with emotions about my scan, anxiety about waiting until Tuesday to talk to my doctor, being very tired, and tired of hearing my 18 year old daughter curse like a drunken sailor, I lashed out. Ironically, I dropped the “f” bomb myself, when I told her to stop cursing and do what I had said to do.

Of course, this did not help me to go back to sleep. I was angry at her for the way she had talked to and acted toward me, angry at myself for not handling the situation better, and overall very frustrated. Because of this, I did not go back to sleep until after midnight, when I was able to calm myself down and my fatigue took over. Then, I was back up at 7:00 this morning to get ready to go to work.

I am going to try harder to have patience and deal with everyone better. Sometimes I get so wrapped up in my own thoughts and feelings, I forget to take other’s thoughts and feelings into account. When I get home from work tonight, I am going to apologize to Bree, and talk to her about what happened last night. With everything going on, the last thing that either of us needs is to be arguing over dumb stuff.

CT Scan Results Before Doctor Consultation

Last night I got an email from Promedica telling me that I had a new message in their My Chart web site, which is a portal for patients. I logged into My Chart and looked at my messages, but there weren’t any new messages. Then I clicked on the Test Results section to see if the results were in from the blood work that my PCP had requested, and not only were those results posted, but also the results of my CT scan from this past Monday.

Normally the CT and PET scan results just say that the results are ready and that the requesting doctor, in this case my oncologist Dr. Phinney, has to release them to me. In the past, that has always been after I meet with him for a consultation, where he goes over the results with me and we discuss what we are going to do next. Unfortunately, this time was very different, because both of the doctors in radiology actually posted their complete reports. Once I saw this, I immediately began to read the results, with my wife Tina, and we were totally shocked by what the reports had to say. It seems as though my lucky streak of seeing good results from the chemo have come to an end.

The CT scan report for my chest, compared to the CT scan on 4/22/2017, noted that a nodule in my right lung that had previously measured 6 mm is now 11 mm. In the left upper lobe, a nodule that was previously seen as sub-centimeter now measures 6 mm. There is also a new mass in my left upper lobe that measures 3.2 cm. It was also remarked that multiple nodes seen within the right lower lobe have increased in size from previous study. The doctor’s impression was “Diffuse worsening of metastatic disease, now with dominant solid lesion within the left upper lobe.”

The CT scan report for my abdomen and pelvis wasn’t any better. Compared to the CT scan on 4/22/2017, there is a new low density lesion at the caudate lobe of my liver, measuring 1.2 cm. The doctor also remarked that the multiple low density hepatic lesions demonstrates the mild prominence in today’s exam, specifically the posterior inferior right hepatic lobe segment which currently measures 1 cm. The doctor’s impression was “There is interval development of 1.2 cm low density hepatic lesion at the caudate lobe. This is worrisome for metastatic disease.”

So, after 18 chemo treatments with FOLFOX, including 12 with Oxaliplatin, the cancer has decided to fight back. Not only has it spread with new lesions and nodules, it has also made some of the existing ones grow. For now, I have no idea what is going to happen; I don’t meet with Dr. Phinney for the consultation and his recommendations until next Tuesday, August 15th, at 4:30 pm. Until then I need to find a way to keep myself busy and my mind off the obviously worrisome news these reports have brought.

Tonight my sweet granddaughter Ava is coming over, so that we can watch some of the American Ninja Warrior episodes that I have recorded on our DVR. She loves that show and it’s some good quality time that we can spend together, which I love to do. I also have to work tomorrow and Saturday, so that will help keep my mind busy. Fortunately, Tina is also off work for the whole weekend, which is a rarity, and I will have her to lean on Friday and Saturday night, as well as all day Sunday. Until next Tuesday afternoon when I meet with Dr. Phinney, I am going to do a lot of praying and try to keep my thoughts as positive as possible.

Feeling Drained and Scatter Brained

Everything that has happened so far has been nothing short of a miracle. Getting in to the doctors offices, getting all the tests done and getting their results, having the surgery and it being successful, and such a rapid and full recovery has been a blessing. So don’t get me wrong, I am grateful.

But the past two days, I have been very anxious about my appointment with the oncologist on Thursday. It’s not like I don’t know that I am going to start chemo, but there is so much I don’t know. Which type of chemo, what delivery method, when is it going to begin, how long will I need to have it, which of the multitude of side effects are going to effect me, will I be able to work while going through the treatments, how much is it going to cost, etc.

I am tired all the time and even after getting almost 10 hours of sleep last night, I am exhausted now. I am having a real hard time keeping my concentration on work, family, or anything else. I know that I can’t change anything until I find out Thursday, but that doesn’t stop my head from swimming in it. I just want to know how we are going to proceed and how it is going to affect me physically, mentally, emotionally and financially.