Quick Update

I wanted to give you all a quick update on how my radiation went. I had 10 sessions and finished on Friday, March 19th. It takes about 2-3 weeks before the radiation begins to start having an effect, so I'm just on the leading edge of that. I haven't noticed much improvement, but I am beginning to notice some irritation on the skin around my eye and my temple, so I think that's a sign that the effects are starting to show up.

I spoke to the doctor on the phone on Friday and he said that he expects that I will start to notice a difference over the next couple of weeks. Other than that irritation and some occasional minor pain, I mostly feel very fatigued, which is the number 1 side effect of radiation.

I'm looking forward to spending Easter Sunday with my family and capitalizing on the fact that my and I are fully vaccinated. It will be wonderful to spend time with all of them celebrating Jesus' resurrection. Please pray that I will be feeling well enough to enjoy it. My plan is to make Prime Rib, something I usually do for Christmas, but we couldn't this year because of the pandemic. 

Thanks for all your encouraging words and prayers. I'll try to update again in a couple of weeks. 

Eyeing a new journey

So, I was going to write a bunch of eye puns and idioms throughout this update, but I can't really see myself doing that (okay, so just one.) Rather, I'm just going to jump into an update of some new developments with my cancer.

3 weeks ago today, I had a telehealth visit with a local convenient care place here in Maine. I'd been having some congestion and was noticing that I would get double vision when I looked to the far right or left. The provider put me on an antibiotic and some of the symptoms of the sinus infection improved, but my vision issues continued, along with some pain (mostly feeling like a bad sinus headache.)

Last Sunday, it got to the point that I decided to call the on-call doctor at my primary care facility. He recommended that I go to the ER. By that point, I'd used the internet to professionally self-diagnose orbital cellulitis, as pretty much all of the symptoms fit. I figured I'd be admitted for a few days IV antibiotics and it would clear up.

It wasn't until I was getting ready for a CT of my head that it occurred to me that it could be a tumor. I'm not sure why this never occurred to me before. I'd certainly known it was possible that the cancer could spread anywhere, but I was rather convinced that this was just and infection that had gotten out of hand, despite the fact that I didn't have a fever.

Eventually, I met every ER doctor and PA at this small town ER as the CT showed a mass behind my right eye. They were a bit overwhelmed, I think, and one recommended that if I was told to go to the ER again I should go to the one in Portland, as I had originally intended. It was a long night, but the timing was good as over the last week my right eye has gone from having double vision and some irritation to very swelled and rather hard to see out of even with my other eye closed.

I am planning to begin radiation treatments in Maine on Monday. It will be five days a week for two weeks. The radiation oncologist is confident that they can stop the growth of the tumor while protecting my left eye. As the pressure releases off my right eye, it may regain at least some of its function, but at least this should stop any further damage.

I've been feeling a bit worse each day as the bulging of the eye and pressure on my temple area and around the eye have increased. It's not severe pain, but it feels like a bad sinus headache or sometimes and ear infection. 

My left eye is okay, but it is definitely stressed about me using it exclusively. I didn't need glasses before this, but my left eye was a bit weaker than right eye, so reading is definitely more challenging. Also, my right eye is dominant, so even with it closed I get some ghost imaging/fog over my vision. 

I tried one eye patch, but it put too much pressure on my eye and didn't seem to help that much. I am going to try another, but I'm not very optimistic I'll find one that helps until the tumor starts to shrink and take some of the pressure off.

One good development, which also complicated how I've been feeling the last couple of days, is that I got my second dose of the Covid vaccine on Thursday. I was able to move into an assisted living facility back in October and therefore was part of a federal program to vaccinate residents and staff. I felt worse since then, but I honestly can't tell if it was vaccine related or cancer related, or a combination of both. 

Please pray that the radiation therapy is able to quickly reduce the size of the tumor to take pressure off my eye and that I might get back at least some of the function in my right eye. Thankfully, my sister, Liz, has her two week Spring Break starting Monday so my Mom would usually helps with one of my nephews hybrid learning schedule will be able to take me to treatment each day.

I'm getting a bit tired, so I think I'm going to leave it here. I'm doing okay emotionally. There's more going on, especially regarding the options for my overall cancer, but I haven't made any decisions on that yet, so that can come at another time.

As always, thanks for the many ways that you all support me with your prayers, encouraging words and generosity of time and money. It really means a lot!

PS: Please excuse any egregious typos! I am sure that my other posts have them as well, but this time I have a good excuse as to why I couldn't proofread this ;)

Update

So it's been four months since my last update. A lot has happened since then, so I'll try to go through it all quickly so you can have a sense of where things are with me.

I moved back to Maine in Mid-July to be closer to most of my family. I spent the first three months in a couple of extended stay hotels, as we explored options for more permanent housing. Maine is beautiful as always and it's been good to be closer to most of my family, but there are a lot of things that I miss about Illinois, my sister Janet, my friends and my church being on the top of that list.

About a month ago, I moved into a new apartment that fits my needs and is affordable. This was really a gift from God that I found it. A couple of weeks ago my stuff arrived from Illinois and I'm finally feeling settled in, thanks especially to my mom helping me unpack.

In September, I started an oral chemotherapy. It is one of the final FDA approved chemotherapies for metastatic rectal cancer. I was on the drug for two months. It wasn't very much fun, especially the second month as I started to vomit fairly often during the two week stretches that I would take the pills twice a day. It was less difficult, though, than the chemo regimen I had been on for the last couple of years, so I did appreciate the lack of some of the side effect that had been so bad previously.

I had a CT scan last week and met with my oncologist today to go over the results. I currently have a few large tumor in both of my lungs and they each grew somewhat larger during the last two months. That means that the chemo was not effective against the cancer. This wasn't too surprising as after many years of chemo tumors can become resistant to other drugs, and this was sort of a last line of defense option. 

The next steps are that I'm probably going to have another biopsy of the tumors. We did one in September, but they weren't able to find any usable cells for genomic testing. Unfortunately, the tests they would do to make sure that the biopsy has useful material would make testing the sample impossible. The hope is that there might be a new mutation in tumor since my last genomic profile back in 2011 that would allow me to qualify for a clinical trial. The chances are pretty low, but we're sort of out of proven options at this point. There is one other FDA approved oral chemo, but its likelihood of being effective is quite low and the side effects are often quite severe. I don't think that the cost-benefit analysis makes sense with that drug.

I'm going to meet next week with a doctor at Dana Farber Cancer Institute in Boston. I've met with him a couple of times about possible clinical trials he is working on. Until now, he's suggested sticking with the approved chemotherapies, but that once those were exhausted we could consider his immunotherapy trial. He has cautioned me both times, though, that the trial hasn't been showing definitive results yet.

I'm going to return to my oncologist in a month when hopefully he has the results the biopsy. At that point we'll discuss further options. I think the chance of finding an actionable mutation is low, but it seems worth at least exploring.

At the moment, I'm not having any major symptoms from the tumors. They aren't near my airway or any other vital structures, but they are quite large. I have had a cough for more than a year now, but it seems to be related as much to the many hernias I have from past surgeries and other gastrointestinal issues as it is to the cancer. My mobility is a bit less as the neuropathy from my radiation treatments on my spine have continued to weaken my right leg and foot. I'm especially thankful for the blessing of this apartment which makes getting around much easier.

Please pray for wisdom about what options to pursue and that the cancer continues to grow slowly in the meantime. Thank you all for your encouraging words and prayers. They mean a lot to me.

Another journey

It's been a really long time since I made a blog post. I'm sorry about that and for the fact that I probably won't be any more consistent in the future (except maybe consistent about not doing regular updates.)

The world has changed a lot in the last 8 months for everyone! The advent of the pandemic meant that I didn't get to go home this spring to visit my family as I'd hoped. That was really disappointing. It also meant that I couldn't attend Easter services at my church, which was something I was planning to take a break from treatment to do. On the other hand, I have been blessed in many ways during this time. While everyone else had to quickly adjust to staying home and interacting with family and friends through Zoom or Google Hangout, that has been my life for much of the last 3 years, so it wasn't a huge adjustment for me.

While my church couldn't hold services in person, they began live streaming services something that they hadn't done before, so I got to be "there" for a lot more services than I would have been able to during treatment in normal times. My small group always made the effort to include me "virtually" in our bi-weekly meetings, so it wasn't really an adjustment for me when we all had to attend that way. I am conscious of how hard the transition has been on so many people, so I am thankful for the small blessings.

I did six months of this most recent round of chemo (irinotecan and erbitux). This period and the 10 months I did a couple of years ago have been the most difficult chemo regimen I've had in the 12 and half years since my rectal cancer diagnosis. I was strongly considering taking a break, because the side effects were wearing me down physically and mentally. The results of my CT scan at the end of April made that decision for me as the tumors in my lungs grew despite the five rounds of chemo we did between February and April. That meant that the drugs were no longer effective.

I decided to take a month to consider my options. In terms of medical options, there are limited ones left. One option is to go back through some of the drugs that already failed and try them again. This feels really illogical to me. Perhaps there is a medical basis to hope that they might work again, but I don't think I could mentally survive 3 months of chemo that has a high likelihood will fail. Another option is a couple of oral chemos that can hold tumors steady and slow spread, but almost never reduce the size of tumors. I guess a third option is to look into a clinical trial.

I did not to start chemo again in June, because by that point I had decided to not renew my lease. As I said above, I've adjusted pretty well to the lock downs and quarantines, but being isolated and a thousand miles from most of my family seemed like an untenable thing at this point. That's especially true when the main reasons for my returning to Illinois, the possibility of teaching and the chance to attend my church in person, are both not possible in the current environment, especially when I have already compromised lungs. I'm going to miss all the people here (again), but I am thankful that I'll still be able to participate in my church, though from afar.

So that's a long way to say that I'm moving back to Maine at the end of next week. I'm going to be staying in an extended stay hotel for at least a couple of months. My family and I are exploring some options for the longer term. Thankfully, I was able to access a portion of my life insurance policy, so I have more flexibility and options than I would have otherwise.

Another bit of news is that I started another master's program at NIU. It will lead to my being licensed as a library media specialist, along with my elementary teaching license. It has both the benefit of giving me something to do with my time and the chance that I might have the option to work in a more flexible environment than the classroom for working around chemo. That's possibility is likely at least a couple of years off, but I have been enjoying the chance to learn and engage my mind again. The program is entirely online, so that has been a blessing both for me during chemo and with the pandemic.

Thank you to all of you for supporting and encouraging me over the years! It really means a lot. Thank you for your continued prayers as I move and as I make decisions about whether to start chemo again over the next month or so. My insurance won't switch over until August, so it will be at least then before I start anything new. I will try to remember to update once I've made a decision.

Round 1 complete

The first round of treatment went about as expected. This is by far the hardest treatment regimen that I've done for any extended period of time, but overall the side effects were less severe than they'd been when I stopped treatment last year. I think they'll eventually get worse, but for now I think I benefited a bit from having the break.

The GI symptoms are the part that makes it the most difficult. I had some severe diarrhea, but it didn't last as long as it has when I've done a few more treatments. However, I did have a lot cramping for almost the entire two weeks, which was unpleasant and made it risky to venture out, in case the diarrhea returned.

I was able, though, to make it to the funeral of my former principal, Bob Allison. He hired me 15 years ago and had an enormous impact on my life and my teaching. It was heartbreaking for him to pass suddenly after a battle with pancreatic cancer. It was good to see many people that I hadn't seen for a long time and to remember him with them. My prayers are with his wife and children.

Please pray for me that the side effects will not get worse this week. I have a new drug to hopefully deal with the cramping and I'm hoping that it helps. Thanks for all your prayers and encouragement over the last two weeks it's meant a lot.

Infusion

I'm home from treatment today. Mark, my brother, picked me up at 6:40 in a snowstorm and delivered me to the cancer center at 7:29 for my 7:30 appointment! My sister Janet drove out from Chicago in the storm, too. I really appreciate the effort it took both of them to navigate the first snowstorm of the year. We saw a couple of accidents on our way out this morning, so it was definitely slippery.

The infusion itself went pretty. I slept through a lot of it, which probably made Janet start to reconsider her drive out in the snow. They give me benedryl before one of the drugs and it knocks me out good for about an hour. Later, they give me some sedation during the drug that is more likely to cause nausea. They both were effective, which it didn't make me the most talkative person (unless you count snoring!)

I'm home now and feeling okay. I don't feel great, but I'm on some strong anti nausea drugs and steroids, so the nausea is usually manageable. After 2 or 3 days, the nausea usually goes away almost completely. However, around Day 3 is when I start to develop the serious and unpredictable diarrhea. It tends to get worse the more rounds I have, so it might not be as bad this time. However, the first time I ever took this drug back in 2016, I had a really bad accident, so while the duration might be shorter, the severity hasn't been less when I've resumed after long breaks.

I also am on a drug, Erbitux, that affects how epidermal cells grow. That is good for fighting the rectal cancer cells in my lungs, but it also causes a nasty and irritating rash all over my skin, along with some hair thinning and scalp sores. I except those will start appearing in the next few days, as well. I do have a medicine that helps to control it, but it's pretty harsh stuff on its own, so it's a bit of a trade off. However, some people get such a bad reaction to Erbitux that they have stop taking it so it doesn't cause permanent damage to their skin. For that reason, it's definitely worth taking the other medicine.

I'll try to post again during this two week cycle. Thankfully, I was able to have groceries delivered last night, so I am all set there. I was worried about cleaning up my car after this storm, as I'm even less steady on my feet after the sedation, but Mark cleaned the car off for me! That was a big help!

There had been 3-4 inches of snow on my car and it would
have sat there for awhile if Mark hadn't cleared it for me.

Thank you all for your words of support, those who generously supported me on the GoFundMe page that Janet set up, and for your prayers. I'm still dreading the side effects of this treatment and the cumulative damage that doing multiple treatments does to my body, mind and soul. However, I am thankful that God has put so many wonderful people in my life to support me through this.

Lamentations 3:19-26 (ESV)

¹⁹  Remember my affliction and my wanderings,

the wormwood and the gall!

²⁰  My soul continually remembers it

and is bowed down within me.

²¹  But this I call to mind,

and therefore I have hope:

²²  The steadfast love of the Lord never ceases;

his mercies never come to an end;

²³  they are new every morning;

great is your faithfulness.

²⁴  “The Lord is my portion,” says my soul,

“therefore I will hope in him.”

²⁵  The Lord is good to those who wait for him,

           to the soul who seeks him.

²⁶  It is good that one should wait quietly

           for the salvation of the Lord.