Not Feeling Well

The new chemo, Lonsurf, is really kicking my butt the past few weeks. The fatigue is much more than I expected and no matter how much sleep I get, I am still extremely tired and having a very difficult time concentrating on even the simplest of tasks. I just finished the first round, which means that I get a two week break from the chemo, but I don’t know how long it will be before the fatigue starts to get better, if at all, and that just sucks.

I have been off work the past two days and have slept a crazy amount of time, at least for me. As an example, Sunday night I slept for about 7.5 hours, then slept again for another 5.5 hours Monday morning into the afternoon. Then I went to bed on Monday night around 8:00 and slept for 10.5 hours straight, yet still awoke very tired. In the past (even on chemo), if I got about 5-6 hours of sleep per night I was functional; 7-8 hours of sleep and I was a rock star.

But the past few weeks, it has become increasingly difficult for me to do anything that requires concentration, including reading or composing emails, watching TV, playing games on my PS4, and sometimes even just talking to people. My mind is all over the place and yet nowhere, all at the same time. Easy words escape me while I am talking and typing, and it frustrates me so much. I just feel so different from who I know I am, or at least used to be.

I’m starting to wonder if the whole quality over quantity thing isn’t making more sense again, because I’m just about useless like this.

Vacation Scheduled

With my health slowly declining, Tina and I decided that it was time for one last big vacation, so we started looking. We originally planned to go to back to the Hard Rock Hotel in Cancun, because we absolutely loved everything about it. The beach and ocean was incredible, the food and drinks were amazing, and the room and the customer service was more than we had expected.

However, Tina started looking around at other resorts in Cancun and when I asked her why, she said she was looking for something new and different. Then she asked me where I wanted to go; I explained that, in the end, this trip was going to be her memory, so I wanted her to make the choice. For me, I am just glad that we are able to go someplace beautiful again, and to be alone with each other, before my health is to the point where we can’t do so anymore.

In the end, Tina chose Hawaii, as we have always talked about going but never did. So, we started looking at the different islands, hotels, packages, flights, etc. and finally decided on the Hilton Hawaiian Village on Waikiki Beach in Oahu, Hawaii. We are in the Rainbow Tower, right on the beach, and facing Diamond Head, which is only about two miles away. We leave at the end of February and will be there nine glorious days!

Besides getting away with each other, and enjoying the beach and ocean as we always do, we are also very excited about the humpback whale migration, which is occurring now. We have already booked a whale watch excursion that guarantees that we see a whale, or we get to do the cruise again for free! We are also planning on visiting the Waikiki Aquarium, and are looking at taking a day to go to Pearl Harbor, and possibly Diamond Head, as well.

We are so ready to go! Twenty two days and counting…

New Chemo is Much of the Same

Last week I started Lonsurf, the last in line of chemo that has any kind of chance of helping to slow down the cancer, even for just a little bit. Besides some frustrating but minimal GI problems, the only real other side effect that I have had to deal with is fatigue. Major fatigue, really. It doesn’t matter if I sleep for 8-10 hours, I feel like I got hit by a truck all the time. I’m having a hard time concentrating on much of anything and am seemingly much more forgetful than normal.

My coughing has improved a little, though my breathing has not. If anything, my breathing has become worse. My chest is feeling tight more often than even a few weeks ago, and catching my breath after I start coughing is getting harder and harder. Because I wanted to try to get ahead of my declining breathing as much as possible, I asked my doctor about getting oxygen at home, thinking that it would possibly help me when I am having difficulty.

This week I went to have an evaluation and did not drop below the needed threshold, which made me think maybe things aren’t as bad as I thought. They sent me home with a pulse oximeter and I had to wear it while I slept. I thought about not using my CPAP to see if I could skew the results to ensure that I was able to get oxygen approved, but in the end decided that I would use my CPAP and see what the results were.

On Wednesday I received a call with the results, which were more alarming that I had expected. Even with the CPAP, my Sp02 (saturated oxygen level in my blood) dropped below 89% for more than the hour required to be eligible for oxygen at home. Actually, my Sp02 dropped below 89% for a sustained hour, as well as additional times throughout the night, totaling quite a bit more than an hour. Also, my low point was 55%. That was something that I didn’t expect to hear, at all.

So, I will be getting an order for oxygen this week, and getting the tanks delivered to my house. Hopefully this will help with the fatigue as well, since low Sp02 levels are known to make people feel very tired. Thankfully, I will also be done with the chemo Monday morning and then get a two week break, which I am hoping will also help me to feel better.

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.

What an Amazing Two Weeks!

On Tuesday, September 19th, my incredible wife Tina and I embarked on the first of two trips that would encompass over 3,700 miles and almost an entire two weeks. We planned these two trips to celebrate something that is very important and dear to both of us, our 25th anniversary. I really didn’t want to spend the kind of money that we did on either of the trips, because of my latest scans and my concern of things not going well for me with the newest line of treatment; I really don’t want to leave Tina with a ton of debt from my medical bills. But, after talking to her and a few people who are or have been in our position, I decided that this was something that we should do and agreed to both trips. What happened along the way made me realize how much we needed this.

We started out on Tuesday, September 19th, by flying from Detroit, MI to the Hard Rock Hotel in Cancun, Mexico. It was a beautiful hotel and we had all the perks: a huge room on the tenth floor with a balcony overlooking the Caribbean Ocean, a king size bed, a two-person whirlpool and all the other normal bells and whistles. We also paid to have the all-inclusive experience that included all the food and drinks that both of us could indulge in, which was good at all seven restaurants and six bars on the property (and also included 24-hour room service). We also received $3,600 in resort credits, which we used for two couple massages, a very intimate and wonderful romantic dinner, a few days in a Bali bed on the beach, and more.

We spent nine glorious days and eight magical nights enjoying each other’s company at the beach, at the pool, in the restaurants and bars, and in our room. We spent hours combing the beach for sea shells, playing in the ocean, hanging out with our new friends Jerry and Jessie from Monterey, Mexico and Pericles and Mouriely from Recife, Brazil, swimming in the pools, finding new and enjoying some of our old favorite foods, basking in the sun, and snuggling in bed watching television. It was literally a dream come true; with the only sad time for us coming when we had to pack to leave for home on Wednesday, September 27th.

After a brief day and a half stay at home, during which I worked two half-days, we left in the afternoon of Friday, September 29th, and headed for Louisville, KY for Louder Than Life, a two day music festival with some of our favorite bands. Again, we spent all of our time together, enjoying some great music and live performances, good food and more time for just the two of us. Right now Tina is sleeping in the bed at the hotel while I type this out. Tomorrow we leave to head back home and after Tina fell asleep tonight, I started to reflect on the past two weeks.

Of course we love each other, that should be obvious, since we just celebrated twenty five years of marriage. But the level of our love has certainly grown over the years, not dissipated, like what is common in so many marriages nowadays. We both truly love and look forward to spending all of our free time together, whether it’s going to the store, watching one of our favorite television shows, sharing a meal or just hanging out in each other’s presence. We are both each other’s best friends and the first person we want to call when something good or bad happens in our lives. We are really one, sharing all the good and bad as it happens, together.

Don’t get me wrong, I knew that we had all of this, but sometimes I forget. Sometimes I take it for granted. And with everything going on in our life right now, it was an incredible two weeks that I got to spend with my wife, best friend, and better half. I am so grateful that we did these trips, that I was reminded of the real important things in life, and that I got to do it all with the woman of my dreams.

What a Week So Far!

My week started on Monday with an 8:00 appointment at the Toledo Clinic Cancer Center to get a physical and find out if I was randomly chosen to get the trial drug in the clinical trial that I got into last week. The physical existed of a few questions and a quick listen to my lungs, and I was then told that I was chosen to receive the trial drug, known as BBI608. I started BBI608 on Monday morning and take three capsules, twice daily.

So far the drug has not caused any nausea or extreme side effects, however the diarrhea that I was warned about has certainly hit me today. I am hoping that it is partly nerves, because I am admittedly nervous about starting my new chemo regimen (FOLFIRI) tomorrow morning, because I was told that nausea, diarrhea and hair loss are very common side effects. I don’t care about my hair, but nausea scares me badly, because of my back problems. If you have never had chronic back pain, from multiple injuries and surgeries, I will try to help you understand. Vomiting with back pain like what I have is a horrible experience and hurts very badly, honestly more than words could ever explain.

Actually, I guess I need to be fully honest about my nervousness with starting the FOLFIRI tomorrow. A lot of it is that I am not sure this is going to help and, since finding out that the cancer started coming back and multiplying, I am feeling less hopeful about the outcome of the fight. I have no idea if this is going to do any better that the FOLFOX did, which worked great for about 5-6 months, and that scares me. To compound it, there isn’t a lot left for me if the FOLFIRI and BBI608 doesn’t work. FOLFOX and FOLFIRI are the two primary treatments for cancer, and then they start looking at clinical trials. Since I am already in a clinical trial, if this doesn’t work, then I have to look for another clinical trial.

So I am quite nervous about seeing what the treatments with FOLFIRI and BBI608 will bring.

On a much brighter note, tonight I am heading back to Celebrate Recovery at Northpoint Church, and jumping back into the role of small group leader (I took a sabbatical shortly after I was diagnosed last year). The group is in need of another leader and I volunteered, because I want to help others who are struggling with addiction and other problems. Well, to be honest, I am also going back because when I was involved in it regularly before, I feel like I was in a better place both mentally and spiritually. And with all of the stuff going on in my life, I decided that I could certainly use some help keeping my head thinking on the positive side and I can always use assistance with staying spiritually centered.

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.

Clinical Trial Process Underway

Tina and I met with Jennifer, the researcher at the Toledo Clinic Cancer Center, this morning to discuss the local clinical trial. After a brief discussion, and thinking about the fact that we don’t have a lot of options left, I signed the consent form. I then went to the infusion center, where they drew blood and I left them a urine specimen, which is needed for them to determine if I qualify for the clinical trial.

The last step on my part, which I am going to do at Flower Hospital on the way to work tomorrow, is for me to get an EKG test. Once Jennifer gets the results of my EKG, she will send everything to the doctors in charge of the clinical trial, and they will determine if I would be a qualified participant. From everything that Jennifer and Dr. Phinney have said, it looks like I should qualify without issue.

In a strange twist of events, Jennifer told me yesterday on the phone during our initial conversation, and again this morning when I asked her to confirm, that the clinical trial at the Toledo Clinic Cancer Center is not exactly a true blind study. If I am randomly chosen to have the trial drug, I will have to take them orally (pills) the two days before I have chemo, which will be every two weeks. If I am not randomly chosen, they apparently don’t give placebos, so I will not be given the pills. So I’m hoping that they let me in the study and I get to take some pills!

We are also still waiting to hear what Dr. Penney at the Cleveland Clinic Cancer Center has to offer in the way of clinical trials, but for now we are concentrating on getting into the one here as soon as possible. The last thing we want is for this damn disease to have any more time to spread or grow than it already has.

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.