I failed my blood test again today which means chemotherapy is once again postponed until next Friday (April 5th). My neutrophils (white blood cells) are still too low for chemotherapy and in fact are even lower than they were last week. To combat my neutropenia I will need to start receiving a week’s worth of daily Grastofil injections for each chemo cycle. This time I’m only getting five injections instead of seven due to the upcoming chemo treatment being only one week away (the injections must stop 48 hours before chemo begins). I had to pay out of pocket for the first batch of Grastofil (and could have bought two iPads for the same price) but it sounds like the Ontario Trillium Drug plan and the manufacturer of the drug are able to cover at least some of the cost going forward.
My doctor did have some positive news for me today. Apparently my blood tests have shown a significant decrease in my carcinoembryonic antigen (CEA) level. CEA is a protein that can be an indicator of cancer, especially colorectal cancer. My CEA level was 887.8 on Jan 23 and has dropped to 123.8 as of Mar 21. The doctor says this is really good and that if this continues we may be discussing the surgical removal of Tony when my chemotherapy treatments are complete. Praise the Lord! I have a CT scan booked for May 23, and hopefully these images show further evidence of healing.
Please continue to pray. My number one concern right now is my white blood cell count. I can’t get back on chemo until they climb back to a suitable level.
The secret to weight gain is poutine. I tried Costco’s poutine last night for a light after-dinner snack. Those 1400 calories helped me reach a weight gain of 10 lbs. since my low after my second chemotherapy treatment.
It’s been three weeks now since my last treatment. For the last two weeks I’ve felt great, had a normal routine, and was able to get lots of work done.
Trip planning has helped immensely with keeping my attitude positive. My attitude usually hovers around 99% positive but trip planning has me around 150%. I realize I may not be able to travel due to my less than ideal health related predicament but, for me, planning is half most of the fun. It’s good to have something to look forward to.
My next chemotherapy treatment is scheduled for Friday morning but first I have to pass a blood test. Please pray that my white blood cell count is high enough so that I can have my chemotherapy treatment.
Lately I have been feeling that I’ll make it to 100 (or at least my original goal of 80). I pray continuously that this is God’s will as well.
I haven’t felt this good in awhile. I feel like my old self again. I have been getting lots of work done and have even started planning a trip for Leanne and me for our tenth anniversary.
I have no scans or anything to prove it but I am reasonably certain the radiation did its job and shrank Tony. My bowel movements have been less frequent and I haven’t had any rectal pain for weeks now.
My weight has been slowly but steadily increasing, up about 6 lbs. since the drop after my last chemotherapy treatment. The antibiotics and cream seem to be helping my rash as it is clearing up slowly. I had a little diarrhea last week but basically none this week. My appetite has been great and my tongue feels fine. My hair seems to be thinning a bit but I think that started before the chemotherapy.
I was supposed to start my third chemotherapy cycle on Friday, March 22, but I failed my blood test. My white blood cell count is too low right now so they are postponing my treatment until next Friday (March 29) and reducing the dosage. I really don’t mind having an extra week off from the chemotherapy.
I will be having a CT scan after I’m done my third chemotherapy cycle. This will be the first real opportunity to see how the treatments are working.
Thank God that I feel great.
Please pray that I stay healthy while my immune system is compromised.
I’ve spent a lot of time on the couch this week watching Stargate SG-1. I’m beginning to think that blending with a Tok’ra would be an interesting treatment option. In addition to Leanne, the kids have been helping take care of me. Harry likes to ensure that my water glass is topped up. Daisy is constantly covering me with blankets and making sure I have a pillow and stuffed animal. Magnolia tries to help too, although her help mostly consists of dumping toys on my lap.
I haven’t had a lot of energy, likely due my lack of appetite during the first few days of this new chemotherapy cycle which resulted in further weight loss. I have had my appetite return somewhat in the last few days and expect my weight to reflect this soon. My mouth is mostly healed. It still feels kind of burned or really dry but it is not preventing me from eating solid foods. My favourite food currently is Swiss Chalet chicken, specifically the skin dipped in chalet sauce. A lot of foods don’t really taste like they are supposed to anymore but I am working hard at eating regardless.
Days 2 and 3 were still my worst. Thankfully I did not have any nausea at all this time. My diarrhea has been annoying but manageable and not painful. I’m a little hesitant to take much Imodium due to some constipation I had last Friday.
During my chemotherapy treatment last Friday the nurse told my doctor about my symptoms. My doctor actually came out to see my rash. It was weird because she just kind of stared at me for awhile without actually saying anything. Maybe my rash is really bad or something? It looks worse than it feels. She prescribed me a cream and antibiotics for my rash and a prescription for mouthwash (one of the ingredients being unsweetened cherry Kool-Aid, which I thought was novel although disappointing considering the cost of this medication). I also got a neat skin care product sample kit that is especially for folks who are being subjected to the panitumumab drug.
Prayer requests
Praise God that I am able to eat solid foods again.
Continue to pray that my weight increases.
Pray that I get a lot of work done next week before my next treatment as I did not get much done this week.
Pray that the chemotherapy drugs will be as effective in attacking the cancer cells as they evidently are in doing other unpleasant things to my body.
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
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.
Please pray that my painful diarrhea will become less painful.
Please pray that I pack on a few more pounds. Preferably not 70, but 5 or 10 would be nice.
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.
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
Please continue to pray for my chemotherapy symptoms.
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.
I’m still alive. The radiation symptoms have been in full swing this past week. I have been frequenting the toilet rather often and have been going to bed a little earlier than normal but otherwise I feel fine. Unfortunately I was unable to work many hours this week. I also didn’t make it to the AWANA Cubbies’ Teddy Bear Picnic at church. Since I couldn’t be there Little Daisy decided to bring my bear, Joe Bear, to the picnic.
Daisy Kate and Joe Bear with his coat of many colours
Friday, Feb. 22 at 9:20am is my first chemotherapy treatment. I’m not looking forward to the possible side effects. Adding diarrhea to my already painful bowel movements does not seem pleasant.
I met with the naturopath again today and signed up for the loco-regional hyperthermia treatments and also vitamin C and mistletoe injections. In my opinion there seems to be a reasonable amount of data showing that these treatments may help my situation. My first hyperthermia treatment is scheduled for this Saturday morning and the next one on Monday, where I will also receive my vitamin C and mistletoe injections. The hyperthermia doesn’t sound too bad. I get to lie on my back for two hours while a machine uses radio frequencies to heat up the cancerous parts of my body. This is supposed to make the cancer cells more susceptible to the chemotherapy drugs. The vitamin C and mistletoe may help reduce my chemotherapy symptoms and the vitamin C could even slow down the cancer.
Please pray that these supplemental treatments will help ease my chemotherapy symptoms.
With God’s help we made it through radiation week. During my last session the radiation therapists asked me if I was going to celebrate being done with radiation. The thought of celebrating never entered my mind. I would prefer to celebrate a CT scan showing the cancer disappearing. Better yet, I hope to be able celebrate when the baffled doctors tell me that my cancer is completely gone and they have no idea why. Radiation was only the first treatment but I am thankful to God for getting me through. I think I have finally started experiencing symptoms. My bowels constantly feel like my diet consists solely of chilli peppers. Ibuprofen to the rescue.
Please pray for my symptoms and thank God for getting me through radiation week.
I met with my medical oncologist yesterday and she said that the genetic mutation tests came back normal and there were no hereditary markers. (Apparently that’s a good thing. Praise the Lord!) She is going to start me on three chemotherapy drugs late next week. I will be having a treatment every two weeks for the next three months. The most common side effect will likely be diarrhea. It may only last a few days or may be the entire treatment cycle. There are many more exciting possible side effects like nausea, hair loss, rashes, etc. If I go bald, I already have a great art project in mind for the kids called Decorate Daddy.
Please pray that the chemotherapy will be very effective, with minimal side effects.
On Thursday, a home care nurse came to our house to change the bandages on my port incisions. Even with my partially shaved chest it still hurt when the bandages came off. I really liked the nurse though. She asked me how I was coping with everything and I told her, “My faith.” I told her I am a Christian and that God is in control, and that I have lots of support from my family and church families. I think I mentioned that I am hoping that God will heal me and that’s when she started talking about miracles. She told me a story about a stage 4 cancer patient last year who went from giving up on living to basically being healed. What changed? People started praying. I love hearing healing stories about stage 4 cancer patients; the “0% curable” thing really makes them that much more miraculous. The most encouraging thing the nurse told me is that she sees a few miracles per year. I had never heard anyone try to quantify the number of miracles before.
Pray that I will be one of those miracles.
Fun fact: It turns out that my home care nurse is actually one of the nurses that looked after my Dad as well. Actually, we almost had the same medical oncologist too, but the one my Dad had moved away and I now have his replacement. They assume my tumour has been growing for the past 5 years, which means if I had known about my cancer earlier, my Dad and I could have been cancer buddies and maybe had father/son chemo sessions. That could have been fun, right?
Radiation is a very interesting experience. I get to go into areas of the hospital with big scary warning signs. It’s pretty easy. I lie down on the treatment couch and slide off my pants. Sadly, I am all too familiar with displaying my nether regions to medical professionals. Then the radiation therapists move me around a bit to align the machine with my tattoos. Then they leave the room and turn on the machine. The machine is pretty cool. It spins around my pelvic region and zaps me a bunch of times. I don’t feel a thing though. I think I am still radiation symptom free (can’t shoot webs yet either) but I suppose it is still a little early.
I have a follow-up appointment with the radiation oncologist in a month to see how effective the radiation treatments have been.
Please continue to pray that God will work through the radiation to shrink Tony the Terrible.
God helped me through the port installation today. I almost died passed out on the table but otherwise everything seemed to go fine with the installation. I especially enjoyed the “classical” music selection playing in the background: Simon and Garfunkel, The Beach Boys, The Beatles, etc. The YouTube video I had watched beforehand to learn about the procedure helped me identify the various steps the surgeon was performing on me. It was a little unnerving feeling him pushing on my chest to squeeze the port inside the little pocket he made in my upper torso. I think I felt him feeding the catheter from the hole near my neck to the port device. I wasn’t too thrilled about the removal of my chest hair but it was either have it shaved off before the surgery or have it ripped out by the nurse who changes the bandages tomorrow. They were nice and let me keep my jeans on though. (Years ago for my eye surgeries they made me remove all my clothing just so they could operate on my eye!) Another bonus is that I am not allowed to shovel any snow for two weeks. (Sorry Leanne, or I guess the boy can do it!)
Pray that my chest incisions heal quickly and properly.
I found out yesterday afternoon that my radiation treatments are starting this Monday, Feb. 11. That was a bit of a surprise. However, the bigger surprise was finding out that I am scheduled to get my port installed on Wednesday, Feb. 13, and no one called to tell me about it. I only discovered this appointment accidentally when scheduling my radiation treatments around my other appointments.
Here’s what my week looks like…so far!
Monday: Radiation Tuesday: Radiation Wednesday: Radiation and Port Installation Thursday: Radiation and Rectal Surgeon Friday: Blood Work, Medical Oncologist, and Radiation
I still plan to fit in as many hours of work as I can.
I met with a naturopathic doctor yesterday. He provided us with some good diet suggestions and supplement recommendations while I undergo radiation. As soon as I know which chemotherapy drugs I will be on, he will have some more recommendations on dietary supplements and services to complement the chemo.
I suppose I am most concerned about the port installation. I’m not really thrilled about anyone digging around inside my chest and leaving behind a foreign object. (That may be a tad facetious.) I watched a YouTube video on the procedure and it was quite fascinating.
Prayer Requests
Pray that the radiation will obliterate Tony (or at least shrink him as expected).
Pray that the port installation goes well.
Pray that God will continue to give me strength, as it’s going to be a long week.
Pray that God will give me and Leanne wisdom while we research the various services and supplements the naturopath offers.
