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.

A Great Night’s Sleep!

I’ve been feeling worse and worse the past few days. I’ve been coughing up a lot of junk and generally feeling like I got hit by a bus, with my whole body aching. After working yesterday I stopped at Kroger to pick up some dinner for Tina and myself, as she was also not feeling well and had called off work. I got home dead tired and laid down about 5:30 for a quick nap before grilling the steaks and steaming the lobster.

The next thing I know, I wake up at 10:45 because I had to go to the bathroom. After taking care of my business I went back to bed and decided to go back to sleep. Tina woke me a few times through the night but otherwise I slept really good until 9:00 this morning. It has been a very long time since I went to bed and basically slept fifteen hour straight.

I woke up with the same cough, but feel very well rested. Hopefully the extra sleep gave my body a chance to fight the nasty sickies and help get me feeling better soon. I’ve got chemo this week and the last thing I need on top of that is to hbe sick.

What a Weekend

This weekend started off with me sleeping half of Friday evening and then being up past 2am Saturday morning. I didn’t mind it too much because I was tired and knew that I had to work Saturday evening on a phone system upgrade.

Saturday I woke up at 6:30am, picked up Tina from work, and then went back to sleep until after noon. Then I watched a little TV with Bree, dropped her off for a babysitting gig, then went home and took Tina and Ava to dinner at Longhorn Steakhouse. It’s always a good time having Ava join us for some quality fun time, just the three of us.

Unfortunately, Bree was not feeling well when I picked her back up, after dropping Tina off to work. I slept a couple of hours early Saturday evening, went to work for about three and a half hours, and was again up way too late. While I was at work, Bree woke up and told me that she had a fever of 103.2 and didn’t feel good. That lead us to the local urgent care on Sunday, where we found out she has strep throat. The rest of Sunday was spent taking naps, running to the store, and staying away from Bree.

Then I was up until after 3am on Monday morning. My sleep schedule is totally messed up and I have to get it right by tomorrow for work. I’m still coughing up major junk, even after finishing the Z-pack, and feeling pretty poopy. Ill be calling the doctor again on Tuesday for another prescription and hope that I feel better soon.

Here we Go Again

My chest has been feeling tight the past few days and my breathing has been getting progressively worse since Friday. Last night I actually had to use my home aerosol machine to do a breathing treatment, just to get my breathing settled down so that I could try to sleep.

Today it seems to be a little better, but that is most likely due to the fact that my wife wants me to go to urgent care and I don’t want to. True, I probably should and will end up doing it, but I sure don’t want to.

I never realized how compromised my immune system would be while undergoing chemo treatments. This will be my third or fourth time at urgent care for the same thing since I started chemo, back in November. That’s not even counting the two or three times that I went to the doctor and not urgent care.

It seems like I am getting sick every couple of weeks. Anytime I see someone at work sick I know it’s coming for me next. Not very fun. Especially considering that this is chemo week. The last thing that I want or need on chemo week when I already feel so drained.

Hopefully they can give me a prescription for antibiotics tonight at urgent care.

All Work and No Play…

So I have been really busy at work, working 11 straight days as of last Saturday. Most of those days were 10+ hours and most days I came home to eat and sleep as much as I could. I had Sunday off and, other than catching Kong: Skull Island with my son Mark and his girlfriend Michelle, it was a day of being lazy with a lot of sleep and general rest. Then I was back to work on Monday.

Tuesday was chemo and afterward I tried to sleep for awhile, but that didn’t happen right away. I caught up on some TV shows on the DVR and then about 6:00pm I fell asleep. My sweet wife, Tina, woke me up at almost 8:00pm with a great dinner, and I was then awake until well after 3:00am today. Because of my lack of sleep, the effects of the chemo, and a lot of work over the past two weeks, I took today as a sick day and decided to get some more sleep and general rest.

The good news is that I only have two days left to work this week and I also have a massage scheduled at Massage Green Spa for Saturday at 8:00pm. So I’m almost there, and with some good rest today, I think I can make it.

Bad Sleep but Good News

I fell asleep last night about 10pm and woke up this morning just after 4:30am. I’ve been coughing the last few days and pulled a muscle in my back, which has been keeping me from getting a good night’s sleep since. Today was no different when I apparently rolled over in my sleep, because I quickly awoke with a sharp pain in my back.

Unfortunately, I am going to work this morning, after I pick Tina up from work at 7am, to make some changes on our core router. That means that going back to sleep is probably not going to happen anytime soon. The good news is that my mom and dad offered to treat me to a massage, to get that muscle worked on, and I have an appointment today at 2pm at Massage Green Spa. I’m hoping and praying for some serious relief from the pain when my appointment is done.

I also called the Victory Center this week and found out more about their services, which are free for cancer patients and their immediate families. They offer massages, reflexology, reiki, exercise programs, counseling, and more, all at no charge. What an awesome thing for people in the Toledo area and I have an intake meeting scheduled for next Wednesday at 1pm. They already scheduled me for a massage next Saturday, too.

Once again, it’s nice to see organizations providing free or discounted services to cancer patients. God is definitely shining His loving light down, I just need to remember to open my eyes and look for it.

Still Sick but Some Good News

I saw my doctor (PCP) on Tuesday and he started me on a new medication for my ears. Yesterday I felt a little better, but the pain came back last night and was also in my right ear, more than it had been so far. This is day two of the new medication so hopefully it will take effect today or tomorrow, so that I can get some relief. Because of the ear pain, and my cute granddaughter Ava staying the night and sleeping in our bed with us, I didn’t get a lot of sleep last night.

I also saw my oncologist on Tuesday and discussed the side effects that I am dealing with from the chemo. He initially talked about reducing or cutting out the Oxaliplatin, which is one of the two chemo drugs in FOLFOX, but I quickly suggested that we try it for at least one more treatment. I can certainly deal with the neuropathy that it causes if it will help kick this cancer’s butt!

The doctor also said that he only wants to do two more chemo treatments before sending me for a new PET scan. That is awesome because he originally wanted to do at least six treatments, and has reduced it to just four, before the new scan! I am waiting for scheduling to call me with the date, which should be in or around the second week in January.

While there, we also moved my chemo days from Monday to Tuesday, so that Tina doesn’t have to keep switching her Sundays at work to join me at chemo. Having her there with me helps me tremendously and makes it a lot easier for me to bear; I think I would be really bummed out if I had to go alone! Tina has been my rock through all of this and I am blessed to have such a loving, caring, and devoted wife!

Lastly, we scheduled my next appointment with Dr. Phinney at the Toledo Clinic Cancer Centers for January 20th. I am both excited and worried about this, for obvious reasons, and one other reason. Obviously I don’t want to hear that the cancer isn’t reacting to the chemo, or is spreading/growing. Also, January 20th is my beautiful bride’s birthday and I don’t want any potential bad news to wreck the day that is supposed to be all about her.

But I promised her and myself that I wouldn’t let myself get too ahead in the game, and try not to worry about what may or may not happen at that appointment. I am trying really hard to remain focused and keep my head in the fight. I am so grateful that I have the relationship with God that I do, so that I can turn this kind of stuff over to Him and His will! I may have to turn it over to Him multiple times a day sometimes, but I still can and will continue to do just that.

Sick and Tired

After three days of antibiotics, my ear and jaw are not feeling any better. I was up half the night trying to get comfortable and using a heating pad on my ear for minor relief. Today Tina told me to take the day off and stay home and rest, as much as I can.

I called my doctor office this morning but can’t get in until tomorrow at 7:30am so I have at least a few more days of this before I feel better. And, since I’m completely out of sick and vacation days and don’t get paid for days I take off, tomorrow I’m going to have to suck it up and go to work.

I’m getting ready to try to take a nap and I am hoping and praying that I am able to get at least an hour or two of uninterrupted sleep and wake up feeling even just a little better. I have never in my life had an earache that hurts like this one does and have a whole new respect for my daughters, who both have had their fair share of earaches in life.

I just want to get some sleep and have this pain go away…

Still Waiting

Well it’s been 24 hours and the antibiotics haven’t helped at all yet. My left ear and the left side of my jaw is still hurting pretty badly and pretty regularly, especially when I eat or yawn. On the bright side, my right ear is doing okay and I hope that continues.

I slept for almost twelve hours last night and it felt great. Then I did a whole bunch of nothing all day and spent the afternoon and early evening watching a few movies that I’ve been wanting to catch up on. The Magificent Seven (2016) and Hell or High Water were both really good and Mechanic: Ressurection was pretty good, too.

Now I’m watching the UFC 206 event on TV and plan to go to bed soon, so that I can get some more good rest, and make it to church in the morning. Being sick sucks and I am so hoping that when I wake up in the morning my ear and jaw is feeling better.