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 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 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 the 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.

Keeping Busy and my Head Up

Waiting to talk with Dr. Phinney has been a challenge, but I am doing pretty good with it. I’ve found that keeping myself busy seems to help keep most of the negativity out of my head. I certainly have moments throughout the day where I start to think about it all, but I try to turn my thinking around as quickly as I can. I worked eleven hours on Friday and then, after getting my haircut, I met Tina at Longhorn Steakhouse for dinner. Afterward we went home and watched some TV and went to bed. I slept pretty well last night, with no bad dreams.

I got up at 7:00 this morning and was at work before 8:00. After a long day of database work and some programming, I am getting ready to head home to meet Tina. After a quick change of clothes we are heading over to our daughter Susan’s house for a cookout. After that, if I am not too tired, Tina and I are planning to go to Cinamark Theaters at Franklin Park Mall to watch a movie. We both want to see The Dark Tower, Spider-man: Homecoming, and Atomic Blonde, so we have plenty of choices. We’ll probably pick the one that starts closest to the time we leave Susan’s house, because I am very tired.

Keeping busy has helped and the time is shortening that I have to wait to talk to Dr. Phinney. Prayer has also helped me a lot, as well as thinking of my beautiful wife, wonderful children, awesome grandchildren, and the rest of my family and friends who are behind me and counting on me to fight. Knowing that I am not alone, and have so many reasons to keep pushing forward in this battle, has made it easier to squash the bad thoughts when they creep in. I have no idea what Dr. Phinney is going to say or what we’re going to try next, but I am not going to give up. I am going to fight with everything that I have.

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.

Good Weekend ending with a CT Scan

I had a good, relaxing weekend and did pretty much exactly what I wanted, nothing. Saturday I ran a few errands and got a service call setup for our refrigerator which has a few issues. Fortunately, it is still under warranty, so the service call is completely covered. After my errands on Saturday I played some PS4, watched a couple of TV shows, and took a solid nap.

Sunday was much of the same, without so many errands. After picking Tina up from work I went home and watched some TV, played some PS4 and took another glorious nap. Then Tina and I went to Longhorn Steakhouse for dinner, and after dropping her off at work, I went to the grocery store and picked up some stuff that we needed.

This morning I am at Flower HospitL to get the latest in a seemingly long line of scans. This is my third since starting chemo back in October of last year, and is becoming a regular thing, every three to four months. After eighteen chemo treatments, I am hoping this scan shows continued progress on the nodules in my lungs and nothing new, but at the same time I am ready for whatever the results are.

I won’t get the scan results until my next appointment with Dr. Phinney on Wednesday, August 16th, but honestly I’m not too anxious about it. After fighting this horrible disease for the past nine months, I’ve adopted a whole new attitude about it. Ultimately, the scan is going to be what the scan is, and there’s nothing that I can do about it. I’m just staying strong in my faith and know that whatever the outcome is for this latest scan, it is what it is.

I’m not going to fight any less or change much of anything based on whether this scan is good news or otherwise. It is what it is, and I’m going to keep doing everything that I can to beat this thing into submission.

New Medications

Last week I got prescribed two new medications, both of which I’m hoping will help me a great deal. When I met with Alicia, one of the nurse practitioners at the Toledo Clinic Cancer Center last week for my monthly checkup, I told her about the fact that almost eight weeks after they stopped the oxaliplatin, I still have very bad neuropathy (the feeling of pins and needles and often times a bad burning feeling) in both my feet. While she did remind me that the neuropathy may never go away, she did suggest that I try Gabenpentin, which sometimes provides relief.

I’ve been taking it three times per day since last Wednesday, however because it takes a while to build up the right levels in my system, I have no relief as of yet. I am hopeful that I do get some relief, because the feeling of pins and needles is constant in both my feet. Constant like all day, every day. It really does suck. But, even if I have it for the rest of my life with no relief, if the cancer keeps shrinking, I’ll take it.

While talking with Alicia last Wednesday, I also talked to her about Provigil, and the potential side effects with my chemo. I read an article about Provigil a couple of months ago where they said that it is kind of like the real life version of the “limitless” drug, from the movie Limitless. The article stated that about forty percent of the executives in Fortune 500 companies use this drug. I showed my wife Tina the article, and she did some research into it (and shortly after got a prescription for herself).

What the drug does is help people who are chronically tired, or get very little sleep, concentrate and focus better. Tina has been on it for about a month now and she says it helps her at work, over her twelve hour shifts. Since I am always tired and feeling drained from the chemo, I thought it was worth talking to Alicia about it. She said that it is not only okay to take while on chemo, but she knows of at least a few patients at the clinic that are using it.

With her blessing, I went to my primary care physician on Friday and got a prescription. I have to say, after starting it on Saturday and also taking it today, I see a difference. Both nights I only slept for about five hours each, and yet I was able to focus on quite a few things that normally I would have had difficulty with, such as reading documentation on JQuery and some development stuff I wanted to knock out for work.

We’ll see how both of these new medications help me over time, though I have to say that I am more than a little hopeful that the Gabenpentin provides some relief, and I’m also hopeful that the Provigil helps me to focus at work and get more done.