(Adapted from family emails and journal entries 11 years ago.)
Monday, June 5, 2006
I’ve seen posters around the Cancer Center advertising an upcoming seminar and I hear they give away some nice products. Look Good…Feel Better is a free makeup and skin care class available to women with cancer. The premise is that we need a little help offsetting the “damaging appearance-related effects of chemotherapy and radiation.” The brochure also promises “increased self confidence and knowledge of self-care.” In other words “We know you look and feel like crap and we want to help you learn new techniques for disguising that sallow, haggard look.” Kudos to the marketing team. I’m into free stuff and could use a bit of pampering, so I decide to call the American Cancer Society and RSVP to this exclusive little luncheon and demo. Space is limited, so I’m glad I got in. Thankfully, no one asks “So, what’s your main beauty challenge?”
The day arrives and about twelve of us enjoy a variety of homemade salads and sandwiches, desserts and beverages, all prepared by volunteers. We also get to know one another a little. The young woman next to me can’t be much older than 23 and she tells me about her brain tumor. She has the same radiation techs that I do and we both think they’re great. She lifts up her long, blonde hair and shows me that the whole back of her head is bald. The hair on top just covers it up. Once she starts chemo, the rest will probably fall out. I want to hug her and can’t imagine getting my brain radiated. I tell her about my wig shopping experience and she is amazed that it’s not my real hair up there. She’s encouraged and writes down the shop name. I’m impressed by her bravery and her plans to become a lawyer. We’ve bonded.
After lunch, the hostesses pass out large tote bags, each labeled according to skin tone – light, medium or dark. We unpack an amazing array of skin cleansers, toners, moisturizers, mascara, lipstick, cover-up, eye shadow, you name it! The weird thing is, we all have different stuff, based on what they thought would go well with our skin. Apparently, various cosmetic companies donate these products to the American Cancer Society and workers put together the bags. You might have a Neutrogena cleanser, but an Oil of Olay moisturizer, a Clinique mascara, Maybelline foundation and a Loreal lipstick. Your neighbor might have something from Lancome’ or Coty. The value of the combined products is estimated at around $300 per bag and the loot is all ours! Trading is discouraged – like we could give each other something worse than cancer – ha! We all have mirrors and warm washcloths, swabs and cotton balls in front of us now. Step by step, we try out all our new products as the hostesses (who are former cosmetologists and aestheticians) remind us of good skin care practices.
After putting our fresh new faces on, we have a short wig care demonstration and learn that they can be obtained for free through the sponsor of this seminar. We can also donate our old wigs once our hair grows back. There is a table full of hats and scarves for us to peruse and take whatever we like. There are also very small pillows that look like they’d fit in a doll crib. These are handmade by someone who donates them, and are designed for those who have a port installed or are going through breast cancer. I’m not sure how the breast cancer ladies use theirs, but I’ll place mine between my seat belt and shoulder when I’m driving. Otherwise, the belt presses against my port and is really uncomfortable. Although it feels odd receiving so many gifts for having cancer, I am pleased to experience a small portion of the type of programs and outreach that are available. I leave with a renewed spirit and some new friends to pray for.
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Thursday, June 8, 2006
The nurses and doctors were right. It WILL get worse before it gets better. The chemo knocked me out last week, but I’m down to fewer naps, no headaches and more vertical moments. The mouth sores have returned, along with a sore throat, but both are now decreasing in severity. I developed big blisters on the inside of my lips, making it difficult to eat and all the remedies in the world for cold sores only relieve the pain temporarily. It’s wonderful to have the pump out and chemo over, but the side effects will be with me for awhile, as before. My last lab work was still stable. It was the Mitomycin that caused the drop in blood counts initially (and hair loss), so thankfully, I didn’t have to repeat that chemo drug.
I saw a substitute radiation doc on Monday and he was still impressed with my progress. (My doc from North Dakota is on vacation.) Because my exterior burns aren’t too severe, I can proceed and finish treatment by Monday. I guess sometimes the skin breaks down to the point where the sores weep lymph fluid and then they have to postpone the final radiation rounds. Sorry this is so gross. The same doc also decided that in preparation for the final three “boost” treatments that I would need to have a “marker” inserted to indicate the tumor’s location as they prepared the final films. I tried talking him out of it, pleading that it was my 26th anniversary, but I lost. A “marker” is basically a wire paper clip-looking thing inside the finger of a rubber glove, lovingly slathered with K-Y jelly and inserted into my rectum. I had to undergo this at the beginning of my treatment so it would show up on the x-rays and show exactly where the tumor was. A woman doctor did that detail when I had no soreness whatsoever, but the thought of it now was just about to send me through the roof. Dr. D compromised by promising it just had to be slightly inside. Gee thanks. Then he had the gall to say the obvious “I bet this is all just a big pain in the butt for you, huh?” I thought of how dangerously close his head was to my foot and how easy it would be to “accidentally” bop him a good one. Do ya blame me?
As of this morning, I noticed some of the burned skin peeling off but this is expected and not the same as skin “breakdown.” I now know how burn patients feel. I was given some sticky gel pads to cut and put over the new, pink, raw skin but they refuse to stay in place. Imagine having your entire bottom severely sunburned and then have someone stick duct tape on it and peel it back slowly. Now take a stinging pee and think of me. =0 This is about as close as I can come to describing the pain and discomfort I’m dealing with as of this morning. The numbing gel only lasts a few minutes, the ointments don’t really soothe, and all I can take for pain is Tylenol because of the Coumadin I’m on. Tim and I joked about the possibility of a morphine drip for the next couple weeks. I wear boxer shorts around the house and walk like a cowboy, can’t sit except in a reclining, slouched position, and am typing this while kneeling on couch cushions.
On a more positive note, I must be getting used to being bald. I answered the door after UPS left a package and was hanging out the door yelling at Aspen (Golden Retriever) to get out of the guy’s truck. She knows some drivers have dog treats and she won’t go away until she gets one. It didn’t dawn on me until several minutes later that I was without a hat, doo-rag or anything. Then I remembered his slight double take. Oops! We’re probably now known as the house with the psycho dog and alien woman. I do have some new growth on top which appears to be coming in more every day. Yay for fuzz!
I have two radiation treatments left and then I’m done being fried. I’m sure I’ll have to keep seeing docs and get my port flushed on a regular basis, so the visits will continue, just less frequently. In a few weeks, another PET scan will determine if any cancer cells are still hanging around in my body, so pray that test comes back clean. If so, I think I can get the port removed.
Again, thanks for all the encouragement and for enduring my descriptive updates. Inquiring minds seem to want to know. I do hope I have more encouraging news in a few days, despite the warnings that I won’t really start to heal until 7-10 days AFTER the last treatment. Lord, give me strength and grace to endure the coming days.
mj
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Friday, June 9, 2006
Some dear friends who are going through their own cancer journey talked to me about the emotional toll this disease has had on their lives. They described how everyone puts on a brave face. The cancer patient is getting lots of support from the medical teams and fighting hard to maintain some semblance of normal with daily routine. Depending on the family dynamic, they may cry and talk openly or stuff their fears and tears.
The caregiver is usually trying to be strong and attentive, serving where possible, but not wanting the patient to know how worried they are or the thoughts they are thinking in the darker moments. It all comes down to internal stress and we all process it differently. One suggestion our friends gave was to schedule a time to cry – and rent a sad movie if that’s what it takes to trigger those emotions.
So I rented The Notebook and watched it alone. Let’s just say it worked, allowing me to release some stress and acknowledge that I was possibly being permanently damaged from these treatments. None of us is immune to suffering. This just happens to be my burden to bear at this season.
- Part 10 – A Look Back on my Cancer Journey – Getting my Wings
- Part 8 – A Look Back on my Cancer Journey – “Poster Child” attends Picnic for Survivors