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.

 

I’ve felt better

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.

 

 

Miracles per year

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?