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

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/