CT results coming next Thursday

This post may be a bit on the longer side, but it makes up for my sparse postings this month. In case you just want the quick facts:

  • Last chemo: similar symptoms as previous
  • CT results: Thursday, May 30
  • Next chemo: Friday, May 31

Want a little more? Keep reading.

I had my CT scan today in Cambridge. It was much quicker than my last scan at Grand River back in January. We were back in the van within 45 minutes. Unlike Grand River they made me drink my barium sulphate suspension at home which sure beats drinking it at the hospital and waiting for an extra hour. It doesn’t look very appealing but the taste was acceptable. Well, acceptable enough to drink the 1.5L without vomiting. I was pretty thirsty by that point in the day anyway as I was not allowed to eat anything or drink anything for 4 hours prior to my scan, so it was somewhat nice to have at least something to drink again.

Barium sulphate
Barium sulphate

They gave me the contrast dye again. It has a rather interesting side effect while it is coursing through your veins. It makes you feel like you are going to the bathroom. Fun stuff. I found it more disturbing the first time as I was concentrating hard to hold my breath at the correct time and didn’t like the idea that I could be urinating all over their multi-million dollar machine.  This time I barely felt the sensation. The CT scan felt routine and I suppose it will be a regular routine for the rest of my 60+ years of life.

The nurse had trouble setting up my IV for the dye injection today. It was weird because I’ve had numerous IV’s in that arm. I get so many things inserted into my arms that I felt it necessary to assign different designations to each arm based on the direction of flow of the fluids inserted or removed. My left arm is my “in” arm which is where I get my weekly vitamin C and mistletoe IV and my right arm is my “out” arm where I have my blood test samples taken bi-weekly. Anyway, I’m not sure why the nurse had trouble with my “in” arm as my veins were clearly visible from the outside but she just couldn’t quite get the needle inside the vein once inside my arm. It was actually pretty cool to see her wiggling the tip of the needle around inside my arm trying to catch a vein. At first, I was a little shocked but since it didn’t hurt I was rather fascinated by the process. After the second needle poke in my left arm and subsequent fishing for a vein she gave up and used my “out” arm instead, catching a vein on the first attempt. I’m really getting used to and tired of being stabbed. 

Speaking of getting stabbed… During my last chemotherapy session, I happened to catch a glimpse of the port-a-cath needle that gets inserted into my port every chemo session and delivers my drugs for two days. The thing is huge! My port-a-cath is on my right shoulder so the nurse usually does her prep work on my right side. Often I don’t notice what she is doing due to my lack of vision on my right side but I sure did this time. I’m glad this was not my first plug-in or I might have been a little apprehensive. It is kind of disturbing though, as they really jam it in there. I find it helps to inhale when they insert the needle but it is still rather unpleasant to feel a sharp object poking through my chest.

Port-a-cath needle
Port-a-cath needle

The symptoms from my last chemo treatment were basically identical to my previous one. I will add that Sunday was probably my best day 3 yet. I ate more, felt less nauseous, and was moving around a little more than usual.

I can’t blame this solely on my last chemo session but I am definitely losing my hair. I hadn’t really noticed as I am not due for my annual look-at-myself in the mirror for another few months, but Leanne took a photo of me on our hike at Shades Mill tonight and I was shocked to see how thin ridiculously patchy my hair has become. I think it is time to shave it off.

Hike at Shades Mill
Daisy, Harry, John and Magnolia on our hike at Shades Mill

My poor patchy head

One more thing: Sometimes people assume the worst when I don’t post anything on the blog. They wonder if something dire must have happened to me. Let me try to clear this up. If I don’t post, it’s because I am feeling great and/or I have nothing of significance to report. My conscience will not allow me to flood your inbox with daily “I’m doing ok” mass emails. Don’t worry; if I am ever unable to share significant information, mi esposa has access to our blog and will post an update on my behalf.

I actually do enjoy writing these posts; my enjoyment is directly proportional to the number of giggles I hear from Leanne during the proofreading stage (also known as the making sure I don’t say anything too offensive stage). While I started this blog primarily as an efficient way to update the many people who were praying for us, I also hope that people will see how God is working through our situation, how He answers prayer and that He is in control. My CT scan might show new little Tony’s throughout my body or Tony could be gone completely. I’m cool with whatever the scan may show because God is calling the shots, not me.  

Thank you, everyone, for praying for us and for reading my posts.

Please continue to pray. 

God is good.

Comment on this post

A little update

I’m still tolerating chemo fairly well. I took my nausea medication proactively this past weekend which may have helped reduce my usual day 3 nausea. It didn’t relieve my feeling of lousiness but the absence of dry heaving was most welcome. I did feel quite tired on day 3 and slept a good portion of the day. I ate two small meals, which is really good for a day 3.  I was mostly back to normal by day 4 and even played with the kids in the backyard awhile after supper. As usual, my rash is flaring up a bit but oh well. I like to watch my skin flake off my head and face in the sunlight. It looks like snow. 

I have one more treatment in two weeks before my CT scan. Please continue to pray for me. Prayer must be doing something because it seems chemo has been only messing me up for a day each treatment. My CT scan is on May 23. Please pray boldly that it the scan will show no sign of cancer. Oh, stage 4 cancer is not curable? Perhaps you haven’t met my God. 

 

Comment on this post

3 Replies to “A little update”

  1. Modern medicine is truly remarkable. Remain positive and remember that we are all behind you, supporting you and cheering you on!

Life is good

Thank you for your prayers! I made it through yet another chemotherapy relatively unscathed. As usual day 3 was the worst. I felt a little nauseous and generally lousy. My rash flared up a bit but the medication is keeping it from getting too bad. My throat needed a little bit of my special mouth wash today but it’s really not a big deal just a little uncomfortable. My weight has been mostly stable, hovering just under the 150 mark. My day 3 lack of eating did not have as much of an effect on my weight as last time. I had a little bit of diarrhea on day 5 but I attribute that to late night fried chicken. I am still receiving daily injections from my dear wife which is lots of fun.

Life is good.

Next chemo is Friday, May 3. Please continue to pray for us.

Give thanks to the Lord, for he is good,
for his steadfast love endures forever

Psalm 136:1 ESV

 

 

Comment on this post

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.

 

 

Comment on this post

4 Replies to “A peanut butter and banana sandwich a day, keeps the chemotherapy side effects at bay”

  1. Thanks for sharing your journey with us John. We are so in awe of your thankful and positive spirit and your trust in God.
    Great to see you in church too.
    We continue to pray for you daily as are so many. Prayer changes things!
    Have a great and blessed week.

    Marty and Janet Roberts

  2. God is so good , when we trust him he sees us through the bad and the good. Your faith is just amazing. I have learned something from you reading this blog. Even though I know I must leave it with God, I keep taking it back and the stress has gotten to me. You put it in God’s hands and go on with your day, I need to be more like you to trust in the Lord.
    My thoughts and prayers are with you and the family and have a wonderful Easter.
    God Bless

  3. hi. Our thoughts and prayers are with you and your family always. Your comments today reminded my of my sister in law. your comment “since I can’t do much about it, I figure it’s best just to let the Creator of the universe handle it.”
    Her comments were ‘attitude is gratitude’.
    Have a good Easter and we are always waiting for the updates.

  4. Hello John and family. Trust you all have a victorious blessed Easter celebration. You encouraged us so much and we are so thankful how you respond and go through with your struggles and testing of our Faith in the Lord Jesus. Your response to this situation made us more stronger and will continue to make us not break us. You are in our prayers. Thank you John for great testimony.

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.

 

Comment on this post

One Reply to “The needles worked”

  1. That is such good news John!! We praise and thank God for it. We also will continue to pray for your recovery from this round of chemo. God Bless you and your dear family. Roy & Carole ((Hugs)) to all.

Neutrophils and carcinoembryonic antigens

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.

Thank God for this good news.

 

Comment on this post

Poutine to the rescue

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.

 

 

Comment on this post

One Reply to “Poutine to the rescue”

Feeling great

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.

  1. Thank God that I feel great.
  2. Please pray that I stay healthy while my immune system is compromised.
  3. Pray that I pass my next blood test.
  4. Pray that the CT scan will show a miracle!
Comment on this post

One Reply to “Feeling great”

Chicken and Kool-Aid

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

  1. Praise God that I am able to eat solid foods again.
  2. Continue to pray that my weight increases.
  3. Pray that I get a lot of work done next week before my next treatment as I did not get much done this week.
  4. 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.

 

Comment on this post

One Reply to “Chicken and Kool-Aid”

  1. Thank you again for sharing your difficult journey with us.

    John we are praising Him that you’re able to eat solid foods again. And praying for you, your sweet family, and your health care providers that God will use them to bring you to wellness. This is the desire of our hearts.

    Roy & Carole

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.
Comment on this post

2 Replies to “One down, five to go”

  1. Still praying for you, bro. I saw the picture of your rash and heard your comment about your tongue and was reminded of Job. I like how you too have begun this trial with full faith in God in your suffering. I want to keep upholding you in prayer to God, along with the others praying for you, as I imagine each additional day adds more weight on your test of faith. God sees and measures every ounce of it and Jesus personally sympathizes with every tiny bit. May God strengthen you with power through His Spirit in your inner being (Eph 3:16). Thanks for these updates. I love hearing the comments about how blessed you are by the love and support of your wife and how your kids share in your journey in their own refreshingly child-like ways. You have a neat family 🙂

  2. “Though now He has ascended to the presence of God, and shares the throne of the universe, Jesus has lost none of His compassionate nature.Today, the same tender, sympathizing heart is open to all the woes of humanity. Today the hand that was pierced is reached forth to bless more abundantly His people that are in the world…
    Through all our trials we have a never-failing Helper. He does not leave us alone to struggle with temptation, to battle with evil, and be finally crushed with burdens and sorrows. Though now He is hidden from mortal sight, the ear of faith can hear His voice saying:’Fear not: I am with you. I am He that liveth, and was dead: and behold, I am alive for evermore.'(Revelation 1:18)” E.G White-Sons and daughters of God, pg 122