Preparations (copied from blog entry dated April 29, 2014)
I still don't know exactly when chemo will start. I only know that it will, and likely soon.
I had a MUGA scan on Monday and will likely get the results when I see the oncologist on Thursday. We expect my heart to be fine. (Then again, the surgeon and I had expected my recurrence score to be low rather than intermediate, which is why I'm getting chemo. You never know.)
M chose to stay home, which was good for both of us. She needed the rest, and I needed to be able to do my errands at my accustomed speed. After the scan and after paying some hospital bills I stopped at the natural foods store to pick up what I think of as "chemo food," mainly peanut butter and the like. Peanut butter is a popular food item on the cancer forums because it is protein- and calorie-dense at a time when one's appetite can decrease substantially. Also, soft and bland foods are recommended because mouth sores are a potential side effect. I also placed a double order of tuna, because I don't know what chemo will do to my mobility and the store is about 15 miles from home. I already have a good protein drink mix here.
I then stopped at OfficeMax for filing supplies. I have a three-ring binder with printouts of side effect and pain logs (both .pdf) provided by the American Cancer Society. Side effects in the log include Fever/Chills, Fatigue, Nausea, Vomiting, Sore Mouth, Diarrhea, Constipation, Loss of Appetite, Pain or difficulty with swallowing, Swelling in Hands or Feet, Allergic Reaction, Itching or Rash, Shortness of Breath, Cough, Muscle or Joint Pain, and Numbness or Tingling in Hands and Feet, with space to add side effects they haven't listed. For example, one person on the cancer forums who is getting the same chemo drugs I'll be getting has lost her toenails.
I'd already had the binder, but I picked up several report covers for transporting the logs more easily. I also found an expanding pocket file similar to this one, but on clearance for a quarter of the price. I've been collecting a lot of "cancer papers" and want to keep them organized. M wanted binder clips, so I picked those up, too.
Next stop: Lowe's. We have a canister vacuum that's a quarter-century old and an upright vacuum that's about twice that age (and boy, does that thing have suction when it works!). Bags have been getting harder and harder to find. My upcoming chemo might actually get M motivated to do something about her clutter (I'm not holding my breath -- she might vacuum only between the piles). I decided a new vacuum was in order, so I picked up one that is bagless and cordless. I know M will complain about it being cordless (battery aging out, it's a racket, blah, blah, blah), but I want it. Worse comes to worse, there is a 30-day return policy. We have some serious cleaning to do around here.
Next stop: the medical supply store. I've been stocking up on supplies, based on what I've read on the cancer forums and elsewhere. My list so far:
1. Dedicated thermometer, because I will take my temperature daily.
2. Paper towels.
3. Gloves -- we still have plenty in an old box, but the latex ages. I now have a new box. From the American Cancer Society's "Understanding Chemotherapy: A Guide for Patients and Families" (.pdf):
"Caregivers should wear 2 pairs of throw-away gloves if they need to touch any of your body fluids. (These can be bought in most drug stores.) They should always wash their hands with warm water and soap afterward – even if they had gloves on."
"Flush the toilet twice after you use it. Put the lid down before flushing to avoid splashing. If possible, you may want to use a separate toilet during this time. If this is not possible, wear gloves to clean the toilet seat after each use."
There's more, but you get the idea. Fortunately, the house has two bathrooms. I've laid claim to mine. Also fortunately, the above applies to just the first 48 hours after a chemo infusion.
4. Skin softener, hypoallergenic. (ACS: "Use lotion or oil to soften and heal your skin if it becomes dry and cracked.")
5. Incontinence supplies, because side effects include diarrhea (and also constipation). We have a fair amount of those left over from when M had mobility issues several years ago.
6. Antiseptics -- new tube of Neosporin, new bottle of Betadine. (ACS: "Clean cuts, scrapes, and broken skin right away with warm water and soap. Use an antibiotic ointment and cover with a bandage....Even if you are extra careful, your body may not be able to fight infections when your white blood cell count is low.")
7. Bandages -- We already have plenty of those on hand.
8. Extra soft bristle toothbrush. (ACS: "Use an extra-soft bristle toothbrush that won’t hurt your gums.") I got two of them from the dentist. They look like "mini me" toothbrushes. :-)
9. Chemo caps (ordered from the ACS and shown in my prior entry)
10. Particle masks, because it's possible that I will lose all my hair -- and I mean all my hair. Up top, down below, eyelashes, eyebrows, nose hairs. That last one, combined with my susceptibility to infection, made me think that the masks might be a good idea.
11. Hand sanitizer -- a full-size bottle for home and a travel-size bottle for my fanny pack. (From the Cancer Support Community's "Frankly Speaking About Cancer: Treatments and Side Effects": "Carry hand sanitizer when you are not at home.")
12. Baby wash, to replace my usual soap, due to expected skin sensitivity.
13. Bath wipes, in case I'm knocked for a loop and need to "shower" in bed.
14. Tri-seat cane, in case fatigue gets the better of me.
While there I also saw and picked up a very reasonably priced MedicAlert tag for penicillin allergy. I've already requested a free Lymphedema Alert bracelet here, since injections, blood draws, IV, and blood pressure readings now need to be restricted to my right arm.
From the medical supply store it was on to the post office, where there awaited authorization for the MUGA scan and an authorization number the doc needs to use when submitting his claim.
Finally, I stopped at the supermarket for some stocking up. The woman ahead of me at checkout wore a sticker on her shirt that looked a lot like the sticker I get every time I go to the cancer center. That sticker has my name and my date of birth on it.
I piped up, "I've worn stickers like that!"
She thanked me for the heads-up and took her sticker off. Then she pointed to the neon pink compression wrap on my arm from the MUGA and said, "I've worn that, too."
We Are Everywhere. :-)
I've also been amassing questions for when I see the oncologist on Thursday. For example:
If I end up going on Taxol after the doxorubicin and cyclophosphamide, what are the implications if I get an infection that needs antibiotics? I am allergic to penicillin and Taxol interferes with the erythromycin family. [Full chemo treatment would include Taxol, but in my case it's possible that the other two drugs will be enough.]
Will I be able to drive after the port is inserted? (ACS says to ask the doctor whether I will need a driver. Denise McCroskey, who writes this awesome blog, was told she needed a driver. This is probably a question for the surgeon, but I'll ask the oncologist anyway.)
Where will chemo be administered? What are the specific steps involved? (Anti-nausea beforehand, steroids, Benadryl?)
What does 4 cycles every 3 weeks mean? One cycle every 3 weeks, four times? Does that mean a full week on and two weeks off, or two weeks on and a week off, or something else? [I've seen different interpretations.]
I didn't need any of the Percoset prescribed to me after surgery. If I experience pain from any of the cancer treatments, is it appropriate to take that, especially since ibuprofen is counterindicated with cyclophosphamide? If not, would a pain med be available for me to take if I need it?
If I experience adverse side effects after hours that require immediate attention, what number do I call? Or do I go to the ER? Which side effects, in addition to severe, should I notify you about right away?
Should I stop taking Vit. C (500 mg) and D (1000 IU)?
Any recommended skin creams (I have Curel) if dry skin response? Betadine, Neosporin, or similar for cuts/scrapes? Is Natural Dentist (no alcohol content) okay for rinsing after brushing?
For side effects like diarrhea, constipation, nausea, etc., are OTC medications okay, or should I take only prescription remedies? What if anything will be provided?
The CDC recommends flu and pneumococcal pneumonia vaccines for those undergoing chemo. I had my flu vaccine last fall. Should I get a pneumonia vaccine?
Should I be on the lookout for red urine from the doxorubicin? How can I tell the difference between the doxorubicin and something more serious, like blood in my urine?
I did a freelance job over the weekend. Tuesday is Cleaning Day.
Stuff Just Got Real (copied from blog entry dated May 1, 2014)
I just posted this as my status on Facebook:
From the Stuff Just Got Real Department: I start chemo next Thursday. I get a port put in on Tuesday. All other appointments are TBD, but in general my schedule goes like this: (1) chemo every 3rd week for 4 cycles (and maybe more after that, TBD); (2) a shot to rebuild my immunity the day after each chemo; and (3) blood draws every week. I will be a toxic person (literally) the day of chemo and 2 days afterward; this is also when the potential for side effects will be highest. Tonight I'll fill out an application for aid, since the anti-nausea meds aren't covered by my insurance. After seeing the oncologist today I picked up, as recommended: (1) Tylenol (I already have Tylenol PM) and Claritin, to take the day of chemo and 4-5 days afterward (I prefer ibuprofen, but that's counterindicated); (2) Imodium in case of diarrhea; (3) Colace in case of constipation; (4) hose, to wear on my head to bed for when my hair starts falling out; and (5) 100 SPF sunblock; I'll also need to wear long sleeves. The attached image is a sample from my graphic-heavy Chemo Calendar, since M does better with images for this kind of schedule. Putting it together has been the most fun part of my day so far. PS: MUGA and PET scans both show me as a strapping, healthy gal. Am takin' that mojo with me into battle!