Is that a telescope in your pocket?

The first week of chemo and radiation is over and I am halfway through the second week. For the most part the side effects during the first week were mild, a little nausea and a little fatigue.

Monday, Tuesday and Wednesday, I spent almost 6 hours/day at the hospital attending various appointments and treatments. They were long days.

For the most part, I still feel relatively well.

I had some mild nausea during the first week. My female friends have teased me saying that I now know whet the first few months of pregnancy feel like. The nausea was easily remedied with a light meal or some anti-nausea medication.

Fatigue. I'm not sure if this was the effects chemotherapy or radiation or long days at the hospital but I have been going to bed earlier than usual and sleeping in until 7:00 a.m. I usually get up and go to the gym at 5:00.

I haven't been able to exercise with the PICC line in my arm other than walking, so I walk the 6 km to the hospital and home every day. During the first week I also climbed the four flights of stairs up to the chemo clinic. By the end of the week the stairs were getting more difficult. I would arrive at the reception desk out of breath.

On Friday the "ball and chain" (pump and IV) were removed and I have a little more mobility for the next three weeks but the PICC line stays in until I need it again during the fifth week. They will pull the PICC line out on December 23. At the very least, I am able to have more than a sponge bath I can finally wash my hair.

Over the weekend I started to notice some skin changes, mostly drier and itchier skin. My hands are dry and scaly in some places; I think this is because of all the hand washing and using hand sanitizer, not my treatment. My scalp has become very flaky, lumpy and crusty in some place, washing my hair really helped and my local pharmacist recommended a good water-based moisturizer that Bruce massaged into my scalp and hair.

I also noticed some changes to my mouth, xerostomia, dry mouth, scaly roof, pasty/slimy cheeks, bleeding ums and some potential sores. As my body experiences neutropenia, lower white blood cell count, ther is a risk that the sores can become infected. I am trying to maintain good oral hygiene, brushing often with an extra-soft toothbrush and frequent rinses with a mouthwash made from water, baking soda and salt and a healthy diet.

I also started to notice itching in the area that is receiving radiation ... this I expect to get worse as the cumulative effects of the radiation get stronger. I have started doing twice-daily soaks in a bathtub with six to eight inches of warm water and half a cup of baking soda … it really helps. I have also stopped using toilet paper and switched to baby wipes.

Photo by : NASA

The selection of baby wipes in my local drugstore is overwhelming. I have never had to buy baby wipes before. I don’t have children.

To make things more difficult I can’t use products that are scented to make your baby's bottom smell as fresh as a country breeze or contain aloe, lanolin, alcohol or ethanol.

The ingredients are listed in a super-fine print that no human can read without using the Hubble Telescope.

Well, I don’t normally carry a Hubble Telescope in my back pocket … so there I was crouched in the drugstore aisle using the zoom on my iPhone camera.

When the diarrhoea hit yesterday morning I pulled out the iPhone again. There it was. The second ingredient. Citric acid!

Fuck that shit burns!

References

Dry Mouth (xerostomia)

Chemo Care

http://chemocare.com/chemotherapy/side-effects/dry-mouth.aspx

Neutropenia and Risk for Infection

Centers for Disease Control and Prevention

https://www.cdc.gov/cancer/preventinfections/pdf/neutropenia.pdf

Hubble Telescope

Hubblesite

http://hubblesite.org/the_telescope/

Manneken Pis

I’ve been counselled about a lot of potential side effects from radiation and chemotherapy but the one thing no one talked about was how much I would pee!!

"Manneken Pis" translates from Dutch as
"Little man Pee".
It is a famous bronze statue in Brussels.
(Photo by: Myrabella / Wikimedia Commons, CC BY-SA 3.0)   

Holy Flood Gate, Batman!

I’m pissing more than a bronze statue in Belgian Fountain!

I could write my name in the snow a hundred times over!

Now, I’m not talking little tinkles every hour, I’m talking full-on full bladder releases.

I could water an entire farmer’s field.

At first, I thought this was because I have an IV bag of the chemo drug fluorourcil (5-FU) attached to me 24 hours a day providing a steady flow of the prescribed 0.1 ml of fluid every 20.8 seconds.

The first night I slept with the IV and pump I got up to go to the bathroom four times.

One of the risks of some chemotherapy drugs, in my case mitomycin, is renal failure, which is compounded by all of my HIV medications. I don’t usually drink a lot of fluids but I am consciously making an effort to drink more water to help flush the kidneys and that is probably the real reason for the frequent trips to the little boy’s room.

In addition to drinking more fluids to flush my body of chemo drugs I also have to prepare for my radiation treatment by controlling my fluid intake.

For radiation treatment to the pelvic lymph nodes my bladder needs to be the same size for each treatment, “comfortably full” they call it. There is nothing comfortable about a full bladder.

One hour before treatment, I have to empty my bladder (urinate) completely then … drink 500 ml (2 cups) of water to fill the bladder and hold it in until after treatment. This is usually not that bad if everything is on schedule.

Yesterday, when I arrived to check-in, the board with the anticipated wait-times showed that my radiation unit was out of service. Apparently the computers were offline and all of the units were out of service. The computers had just come back online and the unit was now officially an hour behind schedule. I was going to have to start over.

Having a full bladder ensures that all of the internal organs and other bits are always in the same place for each treatment. Before the treatment begins the technicians x-ray the pelvic area to make sure everything is where it should be. If my bladder is not full I cannot receive the radiation treatment.

Thankfully, after a slight delay, they were able to squeeze me in. I held it in a little longer.

I spent most of my quiet time on the treatment table thinking about not thinking about how much I have to pee and visualizing, like an athlete, how quickly I could pull my pants up, grab my IV bag and pump, coat and put on my glasses and run across the hall to my favourite watering hole, hoping it’s not in use.

References

List of exclamations by Robin

Wikipedia

https://en.wikipedia.org/wiki/List_of_exclamations_by_Robin

Manneken Pis

Wikipedia
https://en.wikipedia.org/wiki/Manneken_Pis

HoHoHo Yellow Snow
agame.com

http://www.agame.com/game/hohoho-yellow-snow

Kidney damage and chemotherapy

Canadian Cancer Society

http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/chemotherapy-and-other-drug-therapies/chemotherapy/side-effects-of-chemotherapy/kidney-damage-and-chemotherapy

PICCs, pumps and purses pt.2

Day 1 of my treatment was a long day that began with appointments at 10:00 in the morning. As I mentioned in my previous post (PICCS, pumps and purses pt.1) my PICC line was inserted in the morning followed by my first chemotherapy appointment in the afternoon.

After my chemotherapy appointment I also had my first radiation treatment. I am receiving the chemotherapy and the radiation concurrently during weeks one and five of my treatment.

We are exposed to low dose cosmic radiation from the sun and deep space. every day of our lives. Ultra-violet (UV) rays are the radiation waves that cause sunburns.

We’ve all been exposed to controlled low dose radiation through x-rays in a hospital or lab to look at our internal organs or bones, or at the dentist’s office to look at our teeth.

Cancer treatment uses higher doses of radiation to destroy cancer cells. Radiation therapy works by damaging the cancer cells over and over again. The cancer cells don’t have time to repair themselves in between daily treatments, so eventually they die. Normal cells can repair and replace themselves between these daily sessions of radiation therapy.

External beam radiation therapy uses a machine to a beam of radiation through the skin to the tumour and a small amount of normal surrounding tissue. This approach can treat larger areas of the body or more than one area, in my case they are treating the site of a tumour that was surgically removed and the pelvic lymph nodes and channels. There are other types of radiation therapy but most cancer patients receive external beam radiation.

It’s very hard to destroy just the cancer cells. Normal cells in the target area are also damaged but they can repair themselves. Finding the right dose of just enough radiation to destroy cancer cells but not so much that normal cells can’t recover takes a team of professionals.

I am receiving radiation treatment once a day, 5 days a week, for 5 weeks, a total of 25 treatments. Receiving treatments over several days with breaks on weekends allows normal cells to recover and repair themselves.

My first session today was about 45 minutes as the radiation technicians took extra time positioning my body, lining up the tattoos and lasers, placing the bolus and setting up the equipment. The actual time that I m receiving the radiation is 5 to 7 minutes as the machine rotates 360° around the treatment table. Future appointments should only last 20-30 minutes.

My radiation therapy sessions are painless. The radiation can’t be seen, felt, or smelled. I don’t feel the radiation entering my body or burning my skin, although radiation burns are a cumulative side effect that I expect will become an issue in a couple of weeks. I will admit that the position I am in, laying face down on a hard surface, is a little uncomfortable.

I must admit though, lying on the treatment table for twenty minutes my mind wanders and I fantasize that the machine will break down and leak radiation and transform me into a super hero.

References

Radiation Therapy

Canadian Cancer Society

http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/radiation-therapy

Hero Factory (create your own super hero)

http://cpbherofactory.com

PICCs, pumps and purses pt.1

Yesterday was day 1 of treatment. … and it was a long day.

Bruce works around the corner from both of the hospitals where I had appointments today so we walked together. It was going to be a lot of waiting around so I encouraged Bruce to go to work and meet me at the end of the day to take me home. We hugged and kissed goodbye on the street corner and we went our separate ways, looking over our shoulders as we parted, nervously smiling and waving encouragingly. Both of us trying to be strong. It was a tender loving moment between us and I held back a tear or two.

My first appointment was at 10:00 a.m. at the Vascular Interventional RadiologyDepartment, Toronto General Hospital, to have a Peripherally Inserted Central Catheter (PICC Line) inserted in my upper arm. This is the thing that scared me the most. I gave me the heebie-jeebies. The procedure uses local freezing so once the freezing was set I didn’t really feel a thing although, I could tell something was happening through dull sensations but there was not pain.

A resident assisted by a technician did the insertion. Although the resident knew the procedure I don’t think the he was very experienced. The technician provided a lot of guidance.

After land marking the vein with ultrasound they punched a hole on the inside of my upper arm and fed a thin tube through the opening, along the vein, up the arm, over the shoulder and into a larger vein stopping short of the heart. During all this time they followed the catheter on an x-ray, negotiating the catheter along the vein.

I was conscious through the whole procedure. I don’t profess to understand their conversation but I couldn’t help but try to interpret what they were discussing. Apparently, my commitment to exercise has resulted in muscular arms, which resulted in some issue with my veins so they had to pause the procedure momentarily to dilate the vein so the catheter could pass through. They also ran into a couple of situations where the catheter would bend or fold back on itself so they had to insert a wire to make the catheter stronger so they could straighten out the catheter and push it a little bit further.

An hour later my 42.5 cm PICC line was complete.

I had a couple of hours to kill before my chemo appointment so I decided to do a little shopping and take myself out for lunch. I needed to get some sweat pants and casual shirts to make my treatments a little easier. I went to Winners a few blocks from the hospital.

It was the first day of winter in Toronto. We had our first temperatures below 0C, a wind chill effect and a little bit of snow, so I had bundled up that morning for my walk with Bruce. I had worn a hoodie under my winter bomber jacket.

After carrying around my courier bag, hangers of clothes and dressing and undressing in the store’s change room I noticed blood running down my arm. It was more than a little bit but it didn’t seem like a lot but It was more than I was comfortable with … and it had soaked the inside arm of my hoodie. I was alarmed but I remained calm.

I skipped lunch and headed to the chemo department at Princess Margaret Cancer Care Centre an hour early hoping that they would be able to see me ahead of my scheduled appointment.

The reception staff triaged my visit and a nurse cleaned me up while other staff walked by oohing and awing and commenting on how much blood there was. They weren’t very reassuring but at the same time I was relieved that it wasn’t serious.

Just before 2:00 my chemo nurse started an IV with saline solution in preparation for the purple-coloured mitomyicin. Mitomycin, a chemotherapy medicine, is a vesicant and can cause extensive tissue damage and blistering if it escapes from the vein.  The nurse or doctor who gives this drug must be carefully trained. The mitomycin is manually and slowly injected into the IV line. I will receive the mitomycin as a single dose on the first day of each chemotherapy cycle.

Once the mitomycin was done it was time to set up the Fluorouracil(5-fu) pump. This was not what I was expecting.

The 5-fu comes in a 500 ml IV bag a tube passes through a battery-operated pump, which delivers a dose along an IV tube to the PICC line. Every 30 seconds the pump makes a little whirring sound and delivers 0.01 mL of 5-fu into my vein.

There are some potential problems that are signalled with a loud alarm. The most common problem is a kink or twist in the IV line preventing the flow of the 5-fu or the batteries could die or I could be late for an appointment and the 5-fu runs out. All easily remedied.

I am attached to the IV bag, pump and tube 24 hours a day for five days and I visit the hospital every 24 hours to have the IV bag changed. The kit and I are never more than two-and-a-half feet apart.

The nurse gave me an oversized reusable shopping bag to carry my pump and IV bag of 5-fu. The bag isn’t very efficient.

When I got home I found a man purse that everything fit into and I can easily wear it over my shoulder.

I am learning how to dress, undress, go to the bathroom and sleep and not kink the line or leave the kit behind. It’s awkward but I am figuring it out.

References

Chemocare

www.chemocare.com

Boxers or briefs?

The three side effects of radiation therapy and chemotherapy during treatment that have me most worried are:

• Nausea
• Diarrhoea
• Radiation “burns” 

I think these are going to be my trifecta.

Nausea

Most people associate nausea with chemotherapy but there is also the possibility of nausea from radiation therapy. Nausea affects our appetite. While the goal during treatment is to stay healthy and an important part of that is eating healthy but what do you do when you have no appetite or you mouth has developed sores from the treatment?

If you are like me, you spend a fortune at the grocery store and stock up on comfort food, easily prepared food and easy to eat food.

Diarrhoea

Cody, our dog recently had diarrhoea and the vet prescribed a diet of white rice, cottage cheese and extra lean ground beef. Did you know that the same foods are recommended for humans?

It’s not the healthy whole grain carbohydrates we are usually told to eat but white rice, white bread, white pasta.

It’s also recommended to avoid spicy foods, acidic foods, and caffeine.

Bland, bland, bland.

Right now my cupboards are filled with white rice, white bread (for toast and French toast), pancake mix, cream of mushroom soup, split peas soup, Kraft Dinner, Hamburger Helper (beef stroganoff not tomato), Rice Krispies, 10 flavours of pudding cups, Jell-O cups, assorted yoghurts, eggs, canned tuna, cold cuts, ginger ale and decaffeinated Red Rose orange pekoe tea.

Not so bland after all.

Radiation “burns”

This is one side-effect that I don’t think I will escape.

I’ve written about the sunburn feeling that is going to develop on my derriere where the radiation comes in contact with my skin but I haven’t mentioned the burns and rashes that will develop in the groin area.

At first I thought that this is caused by radiation travelling through the body and exiting the other side but as I write this I am wondering if it might be caused by the radiation treatment to my pelvic lymph nodes. I’ll have to get back to you on that.

The burns and rashes on the backside are another reason to have a bland diet.

Other advice includes:

Drinking plenty of fluids.

Sitz baths or soaks in warm shallow bath with salt or baking soda added (add that to the grocery list).

Moisturizing with lanolin-free and unscented moisturizers. If those don’t work I can ask for medicated creams or sprays from the nursing station in the radiation clinic at PMCCC.

Wearing loose fitting underwear and pants so that nothing is rubbing the groin area. Boxers with non-elastic leg openings are perfect

I am a briefs (and trunks) guy personally but for the next two months, when someone asks … boxers.