That “other” emoji

I know. I haven't posted in a week. I've fallen a little behind. The side effects have gotten more intense, ugly and sometimes, unfortunately, messy.

I'm still walking to and from the hospital each day. Thankfully, I invested in a nice warm coat last winter. I do not like absolutely hate the cold and my Moose Knuckles (Stirling Parka) is doing a great job keeping me toasty on my long walks.

As far as side effects ... well let's just say things have deteriorated. The radiation burns have gotten a lot worse. In some cases the red burnt skin has broken and is peeling or flaking.

There are some skin discolorations, brown spots the size of a Canadian loonie (one dollar coin). These skin changes may or may not be permanent.

The pubic hair to the left and right above my genitals has fallen out, leaving a strip of hair down the middle. I was describing this to my mother-in-law and she said I had a “mohawk” … she always sees the positive. I on the other hand see bald spots.

At times bowel movements come on very suddenly and the diarrhea is endless and painful and, on occasions, messy.  A few days ago I rushed to the bathroom and flipped up the toilet lid with such force and urgency that it bounced and fell back down onto the seat.  I won’t get too descriptive but all I could do was let it happen … and it was the biggest shit I have had in a long time.

I felt un-human. I lost the ability to control my own bodily functions. Urgent bowel movements. Urgent needs to urinate. Rightly, or wrongly, I associate these control problems with the beginning of life and the end of life. Infants and the elderly.

I was getting scared to leave the house and I didn’t know how I was going to make it to my appointments.  My super-duper-warm Moose Knuckles coat became a burden … I would never be able to get out of it fast enough if I had a sudden need to use a toilet.

So I broke down.  I take a lot of meds to manage my HIV and I am reluctant to take anything that I don’t need. I’ll suffer a headache instead of taking Tylenol and I only take Imodium when travelling – even then I tough it out at first.

I’m no longer toughing this out. I take Imodium as a prophylaxis every morning now.

I had my weekly appointment with the radiation oncologist on Wednesday and he prescribed Flamazine, a topical anti-bacterial cream for the burns (a great product name for a cream used on burns) to use before I apply the barrier cream and Tylenol 3 to manage the pain. I wondered why it wasn't prescribed earlier and my guess is that if they prescribe it too early then they have nothing to prescribe when it the side effects get worse.

My radiation oncologist said that all of side effects are, as he would expect after three weeks of radiation. Nothing unusual.

My radiation oncologist also said that head and neck cancer patients have the worst experiences during treatment … and anal cancer patients come in at a close second and I am handling it very well.

I also had my blood work done earlier this week in preparation for the second cycle of chemotherapy next week. They need to check the neutrophils, white blood cells that are an essential part of the immune system, to make sure my body is healthy enough to tolerate the chemo. If the neutrophils are too low, there is a risk of neutropenia and a decreased ability to fight infections such as bacteria, fungus and yeast. My neutrophil counts are below what is normal for a healthy person, which is expected at this point in my treatment, but they are strong enough to proceed with the chemotherapy on Monday.

Next week will probably be the worst.

The radiation side effects are cumulative, but I now have some lotions, potions and pills to deal with most of the side effects. The addition of the chemo will have its own issues but I tolerated the chemo quite well during the first week and there shouldn’t be much difference the second time.  The only thing that may change is the fatigue … I may be more tired this time around since my body has already been through four weeks of treatment.

Thankfully, I have all my Christmas shopping done.

References

Moose Knuckles (Stirling Parka)

Moose Knuckles Canada

http://www.mooseknucklescanada.com/stirling-parka.html

Flamazine

MedBroadcast

http://www.medbroadcast.com/drug/getdrug/flamazine

Neutropenia

Cancer.net

http://www.cancer.net/navigating-cancer-care/side-effects/neutropenia

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.