Pandemichemotoe

Bottom line: I’m still alive. Chemo is hard. Please continue to pray.

 

It’s been awhile since I have posted anything. It’s taken me almost 2 months to come up with anything noteworthy to report. I even had to go to the trouble of messing up my toe again just so I could make this post more interesting.

The pandemic

So far we are unaffected. I have a nice spreadsheet of all reported cases from around the world because I like data and spreadsheets. I’ve been working from home for over 7 years now and we’ve been homeschooling for roughly the same amount of time. We are all quite used to being together all the time.

I am one of those people with an underlying health condition due to my immune system trying to heal me from the havoc of chemotherapy every two weeks. If you have a little extra prayer time after you have prayed for the people who have COVID-19 and after you have prayed for all the nursing home residents, you could pray for a little protection for us immunocompromised folks.

Chemotherapy

I do not like chemotherapy.  My treatment is considered “essential” so I still get to go to the hospital every other week for my dose of poison. I get to wear a mask now at the hospital. I didn’t like the ones they gave me so my mother made me a Mario one.

Mario mask

To comply with social distancing the hospital removed half of all the chemo chairs in the room so it’s really nice and spacious now. The downside is that no visitors are allowed. As usual, I bring my laptop and I get to work in peace and quiet for 5 hours or so.

As someone who was hospitalized for 15 days last November, I especially feel for all the patients in the hospital that can’t receive visitors right now. Staying in the hospital is bad enough but I can’t imagine being stuck in there without your family or friends being able to visit. Please pray for all the hospital patients.

My chemo treatments have still been tolerable, although I have been extra nauseous during the past few. I’ve been dry heaving multiple times on day 1, 2 and 3 and even managed to actually vomit a few times now. This is different from last year. I am trying some new nausea pills this time, so please pray they do the trick.

It’s been very difficult to eat or even drink anything on the weekends I have chemo. I traded in my water for apple juice which has helped me drink more fluids. I don’t even bother trying to eat because my appetite is non-existent. This only lasts until Monday, Day 3, when I feel about 95% like myself. By Wednesday, I am back to 100%. My current post-chemo craving is a Mango Pineapple smoothie from McDonald’s. I’ve been having one every time after we return home from my Day 3 hyperthermia session.

On my last two chemo treatments I managed to drop over 10 pounds from Thursday night to Monday morning. I gained most of it back over the following week, but I thought 10 pounds in 3 days was impressive (or perhaps disturbing would be a better word). There has got to be a weight-loss product idea in there somewhere…

My next chemotherapy treatment is booked for May 15. I can’t remember how many more I am to have but there should be a CT scan coming up soon.

My rash is still quite present. It’s on every area of my body except my feet. I am taking antibiotics and have a few skin creams to help keep it at bay.

When I am not on chemo I still feel great.

Leanne and I are old pros at ostomy care now. I need her help due to my lack of depth perception. She’s better with stickers and scissors anyway. I was hoping to have my ostomy reversed soon but that is a non-essential procedure so I’m stuck with my bag for awhile longer.

My dear wife is now an expert at giving me my Grastofil injections. All the post-surgery daily anti-blood-clot injections must have helped build her confidence, because Leanne is now an expert at stabbing me. She was worried about hurting me in the beginning, which actually made it hurt worse. Now she doesn’t hesitate, she just jabs that needle in my leg and we’re done in no time. The injections are merely a slight distraction from our conversation.

On my last visit to the oncologist my white blood cell count was so high that he told me to do fewer Grastofil injections. Instead of 7, we are now doing 6 per treatment and will likely be going down to 5. This would be much more significant if we had to pay out-of-pocket for these needles that cost $140 each, but the manufacturer and Trillium are still footing the bill. (Thank you all for paying your taxes.)

My toe

Remember my ingrown toenail I had back in August? Well it came back. I was SUPER careful, I was too scared to cut my toenail at all, but it still came back. I didn’t let it get as infected as last time though before going to my family doctor. He had his colleague, a nice young doctor who couldn’t have been more than a year or so older than Harry, do a different procedure which essentially removed the overgrown skin from the sides of my toe.

This Vandenbos procedure has a longer recovery time than my last toe fix in the ER (6-8 weeks vs. 1 week). As of yesterday, Tuesday, it will be 2 weeks since I had it done. I still have to soak my toe 3 times per day for 4-6 more weeks. The pain isn’t too bad but much worse than in August. I have some neat photos but Leanne won’t let me post them.

If there is still room left on your prayer list, I suppose my poor toe could use some prayer as well, although I’d still prefer you pray that God will heal me from the cancer.

My next post will likely feature something regarding a CT scan unless something else exciting happens to me in the meantime. You know I still have 9 toes that aren’t currently ingrown…

I’m feeling rather speckled

I’ve been feeling a tad speckled as of late. My rash is back in full force, which is probably a good thing actually. Apparently the rash is a sign that the chemotherapy is working which means longer life.

I made it through last week’s chemotherapy session fairly well. I decided to try doing a partial fast the day before, during and after my chemo treatment which is supposed to help make the cancer cells more vulnerable to attack. Eating post-chemo has always been challenging anyway, and since my weight has been adequate and stable, it made sense to attempt this. I hope it helps.

I was mostly just tired, sleeping as much as I could, anxiously awaiting Monday when I knew I would feel better. Unlike most people, I don’t look forward to the weekend as every other one will be the start of a chemo treatment. 

I was nausea-free until just after the nurse disconnected my “bottle” on Sunday. Then I dry heaved a couple times. Immediately afterwards I suddenly had an appetite and ate a spicy chicken wrap my dear wife assembled for me.

I have been craving spicy foods a lot lately. I normally love anything spicy, but Monday and Tuesday post-chemo anything spicy tasted extra wonderful. This was a little odd as usually chemo makes everything taste less appetizing.

I’m already prepping myself spiritually, mentally and physically for my next chemo session which is this Friday, March 6.

I’ll be sure to post again if anything remotely noteworthy occurs.

Thank you everyone for your prayers.

Please continue to pray that the chemo works again to rid my body of this cancer.

January 2020 CT Results

On February 21, I will be starting a new round of chemotherapy.

The CEA marker in my blood has risen which aligns with what the doctors see in my CT scans: that the cancer has started to grow again inside my lungs and liver. It doesn’t look like they will be able to operate on my liver due to the way the cancer has spread out. To remove the cancer spots they would have to remove the entire liver. Likewise with my lungs, there are too many areas to remove surgically.

Apparently drugs are my best option at the moment.

I’m on the first of four standard treatments currently available for my type of cancer which, to me, translates to another few years of life. I will also be pursuing clinical trials. I’m not sure what that will entail but we shall see.

The plan is to give me another 3 months of chemotherapy and then see how I respond. At some point, when it is safe to take a long enough break from chemo, I will still have the procedure to have my ostomy reversed. 

I was a little disappointed with the results, to be honest. I was hoping for a completely clear scan. But God obviously has something else in mind.

I still feel fine. My abdomen is still a little tender from the surgery and is preventing me from doing sit-ups but that is about it. Since my last visit to the oncologist I’ve gained 22 lbs. I’m roughly at my pre-surgery, post-chemo weight.

I can’t say I enjoy living life with cancer, although I do enjoy living. If left untreated I could have been dead back in June of last year. I have no idea how anyone could live like this without God. My life may be coming to an end sooner than I would like. The only way I am coping is because I know God is in control, and ultimately, if the worst does happen, I’ll be with Him in heaven.

I’m rather curious to know how long God wants me to be down here and what He wants me to do while I am living out my last days, whether that be a few years or several decades from now. 

This news has not changed my outlook on life. I am not dead yet and will continue living as though I will make it to my nineties like my Great Aunt Irene, whom we fondly call “Auntie” and who turns one hundred this year. I’m continuing to keep busy with work, and while this may cause you to question my sanity, I have recently enrolled in a 6-month course to learn Biblical Hebrew. Not really sure why, except that I do enjoy challenges. Well, most challenges. I could do without my current “cancer challenge.”

I wasn’t exactly cheering as I left the doctor’s office today but after having countless doctor’s appointments my impression of doctors it that they really don’t know that much. Don’t get me wrong, they know WAY more than I do, but they don’t know everything. They are scientists predicting outcomes based on the available data. I still believe God can heal me because God can do anything. I just don’t know if it is His will to heal me.

Please pray for us:

  • Pray for healing. I’m not giving up hope of being healed until I meet God in person. It would be really nice if He would just tell me what He is planning. And on that note…
  • Pray that the chemotherapy will work. Pray that I can endure the side effects.
  • Pray that I will be eligible for cancer drug trials that are close to home.
  • Pray that Leanne and I can better know God’s will. 
  • Pray for our family. We don’t purposely remind the children of my condition, although they know. I can’t help putting myself in Harry’s 7-year-old shoes (figuratively speaking as his shoes would never last for 7 years and I of course could not literally fit in his shoes). How would I have felt at his age if my father had died or if there had been a distinct possibility he could die? I was blessed to have my father alive for 33 years of my life and my deepest desire is to be there for my children at least that long.

I’ll end this post with the lyrics from a song that I keep praying to God, that reflects my situation perfectly. I used to play this song a lot when leading worship back in my youth. (Am I old enough to refer to “my youth” yet? Oh yah, I have cancer. I can say whatever I want.)

I’ll let you know how my first chemotherapy goes.

Good to Me by Craig Musseau

I cry out
For Your hand of mercy to heal me.
I am weak,
I need Your love to free me.

O Lord, my rock,
My strength in weakness,
Come rescue me, O Lord.

You are my hope,
Your promise never fails me
And my desire
Is to follow You forever.

For You are good,
For You are good,
For You are good to me.

For You are good,
For You are good,
For You are good to me.

 

August Update

Chemotherapy is done, at least for now. I was feeling great until I developed an ingrown toenail that is causing me a bit of pain and preventing me from walking. I’m actually writing part of this post from a bed in the ER as I wait for a doctor to fix my infected toe. Otherwise I feel great, although I don’t exactly look great. My rash has come back fairly severely and the doctor does not want to give me any more antibiotics. I still have some of the prescribed cream that I am using, which is helping. They are hoping the rash just goes away on its own since I am done chemo, but it is a little annoying (and a little fun to pick at the scabs).

I keep forgetting to mention another fun side effect of the chemo. My eyelashes are freakishly long.

My Freakishly long eyelashes
My freakishly long eyelashes

 

I have a CT scan scheduled for September 3. If the doctors like what they see, the next step may be surgery. I have a follow-up appointment booked on September 11 to discuss the results with my oncologist. Please pray that the scan will prove that the chemo has been effective and that God will give us strength for the next part of this journey.

July Update

I’ve actually only had a single chemo treatment this month so far, although my next one is this Friday. My oncologist gave me 2 weeks off for vacation. We rented a cottage up at Muskoka Bible Centre at the same time as my mother and my sister’s family. It was a nice, “work less” vacation for me. The kids had a great time playing with their cousins.  For me, I think, the best part was the break from chemo. I’m feeling especially normal as it’s been 3 weeks since my last chemo treatment.

Last week I met with a genetic counsellor to begin the process of determining if I carry any cancer-related genetic abnormalities. It’s a little late for me but this may be valuable information for my children. The counsellor went over my family’s cancer history but didn’t notice any significant patterns that would indicate a genetic cause. She said you would expect to see a few cases of cancer in any family tree, especially as people get older, but hereditary cancer is relatively rare. My age is the main reason my oncologist referred me to the genetics clinic. I agreed to do the genetic testing since it is free and only required a blood sample. I will get the results in a few months.

Yesterday (Tuesday) I met with my oncologist and he talked about surgery again. According to the doctor I actually only have two more chemo treatments left and then I will be having a CT scan a few weeks later (likely at the end of August). As long as the nodules in my lungs have cleared and my liver lesions have shrunk, then he will present my case to the tumour board again to see if a surgeon is able to remove the liver lesions and the primary tumour or if more chemotherapy is needed. Either way, it sounds like I’ll have a multiple week break from chemo in August.

I appreciate your continued prayers as I finish off this round of chemo (the two remaining dates being July 26 and August 9). Please pray that the results of the next CT scan will be favourable and that God will continue to guide the doctors’ decision-making as He has been doing all along.

June Update

I had an encouraging follow-up appointment with my oncologist today. First of all, my bloodwork was good and I am able to start my fifth cycle of chemotherapy tomorrow. Each cycle includes two treatments, so if you’ve lost count, this will be my tenth treatment. Four more treatments in total will bring me to the end of my sixth cycle. At that point, likely in September, I will have another CT scan. The oncologist said he will be contacting my surgeon to review my case beforehand, and depending on the results of the CT scan, they may consider surgically removing the primary tumour. That means it might be time to cut out good ol’ Tony!

For now, we will persevere through these remaining cycles of chemo. The side effects have not changed and have been quite manageable. Day 3 (Sunday) is still my worst day but it’s bearable.

Continue to pray for the doctors making decisions about my treatment, for wisdom and guidance for them, and for patient endurance for me and my family.

It’s certainly nice to hear some more hopeful words from a doctor this time.

Praise God from whom all blessings flow!

A peanut butter and banana sandwich a day, keeps the chemotherapy side effects at bay

Apparently, some people have been worried about me since I haven’t posted in slightly over a week. Well, I am indeed alive and actually doing quite well.

This past chemo cycle (starting April 5) has left me with the least side effects yet. Here’s a quick rundown of the most harrowing days of this treatment cycle.

Day 1: Chemotherapy day. I was mostly symptom-free and full of energy (I’m sure the steroids had some small part in that…). I brought my laptop and got several hours of work done while I was hooked up to the chemo machine. I had a hyperthermia treatment at the naturopath afterwards and was so intent on squashing a “bug” that I had my laptop out again in the naturopath’s waiting room.

Day 2: Everyone deserted me! While Leanne attended the Kitchener-Waterloo Christian Home Educators Association conference, her parents took the kids to Jakeman’s Maple Farm for pancakes and a wagon ride and to pet the animals. I still felt well enough to make a peanut butter and banana sandwich and cook a box of expensive organic macaroni in between TV viewing and naps.

Day 3: As expected, this was my worst day. I experienced nausea most of the day, including some dry heaving. I managed to eat my daily PB&B but that was it in the food department. I also napped quite a bit.

Day 4: I felt better in the morning but not quite well enough to work. I had a smoothie while I watched Stargate and then went off to get my hyperthermia and Vitamin C infusion in the afternoon.

Day 5: Back to working full time (at home). I even felt well enough to continue my ongoing project of assembling the girls’ bedroom furniture.

I know I didn’t eat a lot on the weekend but somehow I lost 7.6 lbs. I went from weighing 151.8 lbs on the Friday to 144.2 lbs on Monday morning. I may need a new scale. As of today, I am 149.7 lbs.

Today is Day 11. Most surprisingly I haven’t had ANY diarrhea yet, which is really weird since diarrhea is a common side effect of my chemotherapy drugs, my antibiotics and my daily Grastofil injections. 

The only real side effects that I have been noticing are related to my skin. My rash looks like it may be coming back a bit and my skin is very dry. My throat feels a little odd as well, almost like it could use some hand cream. My expensive Lidocaine/Kool-Aid mouthwash is supposed to help with my throat as well. It only bothered me enough to use the mouthwash twice.

I am back to a single bowel movement a day. Praise the Lord! Seriously! I would hate to know the number of hours I have accumulated on my toilet… (Actually, that’s not true; I wouldn’t mind knowing the statistics. I have a graph of my daily weight and temperature readings, after all. Data is fun!)

I really am feeling good.  God has blessed us so much. I am happy and content with my life. My cancer just doesn’t bother me, or at least I don’t allow it to. I know it could get worse, but since I can’t do much about it, I figure it’s best just to let the Creator of the universe handle it.

Life feels normal again. I am thoroughly enjoying my work. Little Magnolia is a constant delight as she is beginning to talk and smiles and laughs at everything. Our Daisy Kate is nuts which is why I like her so much. She can be a nightmare one minute and a barrel of laughs the next. She seems to be quite the artist for a three-year-old. Harry is learning so much lately and I’m so glad I get to play a small part in it. Even today I had an opportunity to give him a spontaneous multiplication lesson. He is getting more fun to talk to as well; I could use a break from discussing Minecraft though.

Please continue to pray for us because it is working!

My next chemo treatment is on Thursday, April 18. Please pray that my symptoms continue to be as manageable as this past cycle.

Pray that the chemotherapy keeps working so that surgery will be an option.

 

 

The needles worked

The daily injections weren’t as bad as I thought. My dear wife was gracious enough to give me my daily stabbing as I have not the fortitude of mind to inject myself. I should see if they will let Leanne do my blood tests too because she is much more gentle than any nurse I have met so far.  I had to ask Leanne if the needle was even in yet. I suppose a subcutaneous injection is a little different than an intravenous injection (hopefully I used those terms correctly). 

I passed my blood test this morning. My white blood cell count is up. At the time of writing I am currently hooked up to the chemo machine being pumped full of poison medicine. 

My weight is now up to 151.8 lbs (thanks to poutine and prayer) which is a nice improvement from my low at 137.0 lbs. 

It’s now been 4 weeks since my last chemotherapy treatment. It’s been a nice break but I am glad to be getting on with my treatment.

Please continue to pray for us. Pray that I recover from this round of chemotherapy quickly.

 

One down, five to go

I am so very thankful to have such a loving and caring wife. She somehow manages to look after me and the kids which she does so well without complaining. 

My rash has spread to my tongue making eating solid foods incredibly painful. But Leanne is constantly bringing me mugs of broth, filling my water, making me a smoothie at the same time she is wrangling our three kids. She is incredible. I am so thankful to God that Leanne is my wife.

My rash does appear to be getting better. It seemed to peak in severity this past Monday.

My rash at peak severity

I had a few more cases of painful diarrhea this week. I’m not sure if the Imodium actually does anything.

My weight has been decreasing over the past few weeks. It’s been really difficult to maintain it, although surprisingly my weight held fairly steady during my broth diet. Now here’s an impressive number: If you compare my weight in 2009, the year Leanne and I got married, with my current weight almost ten years later, I am almost 70 lbs. lighter. A less impressive number would be to say that I am down about 12 lbs. this month.

My appetite has not been too bad but unfortunately I am limited to liquids and soft foods. I am slowly eating more solid foods but it is unlikely that my tongue will have time to heal fully before the onset of the next rash.

On a positive note, I managed to get a decent amount of work done this week.

Tomorrow I start my two-week chemotherapy cycle again. I wouldn’t mind an extra week or two for recovery between cycles, but I know God will give me the strength I need to do it again. Only 5 more cycles to go.

Prayer Requests

  1. Please pray for my tongue. Pray that it will continue to heal quickly and that it will not be affected so severely during the next chemo treatment.
  2. Please pray that my painful diarrhea will become less painful.
  3. Please pray that I pack on a few more pounds. Preferably not 70, but 5 or 10 would be nice. 
  4. Pray for strength. I think I have an idea now of what to expect and I will need God’s help to get through it.

Where’s my hazmat suit?

Day 1: Friday

On Feb. 22, I had my first chemotherapy treatment. I was sent to a room full of people at least twice my age and was told to sit in a hospital-style recliner. The nurse came over and began explaining how everything would work and how to deal with the many possible side effects of the drugs. Eventually she removed the bandages that were still covering my port and then plugged me into The Matrix my infusion pump. It literally felt like she was plugging a cable into my chest. A cable with a big spike on the end. It was not pain-free.

My port, plugged in.

Once all the cabling was attached, she finally left to get the drugs. When she came back with the drugs she was wearing almost full hazmat gear–well, a gown, gloves, and huge face shield. A few thoughts went through my mind at that point. Thoughts like: If this stuff is so dangerous then should you really be injecting it into my chest a few inches from my heart? And where is my protective gear? If a spill were to happen I’m pretty sure more people besides the nurse would be in range.

About three hours later the first part of chemotherapy was finished. The final drug was attached to me via a device resembling a baby bottle which would slowly release the drug over the next 48 hours. 

My Baby Bottle

Day 2: Saturday

I did not sleep well that first night. Before the chemotherapy I was instructed to take some medication, one being a type of steroid. The nurse said it might make me feel “on edge.” Not sure what that means, but I didn’t feel “on edge,” just “a-wake.” I still felt well enough that morning to go to my first hyperthermia treatment. It was fairly relaxing. I felt cramps in my bowels every 15 minutes or so (unrelated to the treatment) and I did not like the amount of pressure that was needed for the probe to make good contact with my skin, but otherwise it was ok. Leanne stayed with me the whole two hours and read a book. 

Loco-regional hyperthermia treatment

Day 3: Sunday

The nausea started. I dry-heaved a couple times early in the morning, but no vomit. I took my anti-nausea medication and spent the morning watching Star Trek (TNG) on the couch. The nausea medication wore off early afternoon just in time for some more dry-heaving. The home care nurse then came by to detach my baby bottle. I did not feel like doing anything other than sleeping, so that is what I did for the rest of the day and through the night.

Day 4: Monday

A most significant event occurred this day: I actually had a shower. The port installation had prevented me from showering my entire body. Now with the dressings removed and no baby bottle to worry about getting wet, I thought I should make myself clean for my second hyperthermia treatment later that morning. The second treatment was a little more boring than the first and felt longer. I did catch up on Albert Mohler’s podcast. I spent most of the day on the couch watching Star Trek and then moved on to Stargate SG-1. I almost felt like I could be working but I was scared that the nausea would come back or something worse. I couldn’t sleep for some reason that night so I got up and had some left over Swiss Chalet at 4:30 in the morning and listened to the newest Adventures in Odyssey album.

Day 5: Tuesday

A rash started on my face near my temple and spread to the rest of my face, neck, back and chest. It is a little itchy but it did not prevent me from working a good portion of the day. I felt fine until the evening when the diarrhea started. I was still feeling the effects from the radiation and that mixed with diarrhea made for a rather unpleasant and somewhat painful experience. I took the recommend Imodium and went to bed as soon as I could. 

The Rash

Day 6: Wednesday

I slept in pretty late but worked all afternoon. My rash was still annoying but bearable. My mouth and tongue were beginning to feel like I had burned them by drinking something hot–not a big deal, but it made it a little uncomfortable to eat harder foods. I had been diarrhea free all day but then it hit me again around the same time as the previous day. This wiped me out for the rest of the night.

Day 7: Thursday

I managed to work basically all day. I felt a little tired but otherwise pretty good. I have been eating better. I eat VERY slowly for some reason but I am eating. My face feels a little sore but manageable. It doesn’t look like the previous nights’ pattern is continuing as I have had no diarrhea yet today.

Prayer Requests

  1. Please continue to pray for my chemotherapy symptoms. 
  2. I’m entering the days where my immune system will be at its weakest. Please pray that the three little germ factories I keep at home won’t get me sick.