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I have become high maintenance.

February 8, 2010

When you have cancer you don’t just sit around the house being tired and trying to get better. Granted, you spend some time time sitting around because of the fatigue, but I think part of the fatigue has nothing to do with treatment. Part of it is because cancer just plain old takes a lot of time and the body needs a lot of upkeep.

I’m not one who is used to spending a great deal of time on maintaining herself. I prefer to spend my time doing things like hiking and reading and writing. I even prefer to clean toilets and kill dust bunnies to spending a lot of time on personal maintenance. By personal maintenance I don’t mean general cleanliness, I mean things you have to do to keep yourself going and healthy.

You might think that since I’m on leave from work there would be “plenty of time” for me to do all those fun things I like to do. Not so. Why not? Well, for one thing last week I went to seven doctor’s appointments in five days. Yes, two of those were for Daniel (orthodontist and sinus infection), but when you calculate all that driving and all that waiting around in doctors’ offices coupled with chemo fatigue… well, there goes an entire week.

Even if I do manage to stay home and away from the doctor’s office, there’s a lot of maintenance to do. As my sister pointed out, I have to take medicine to fight medicine. The naturopath has prescribed some wonderful supplements that help me fight the worst effects of the chemo so I can have some semblance of a normal life. What this looks like on a daily basis is this —-

I take two pills (mushroom extract) in the morning one hour before I eat breakfast. Then I wash up and put some SPF 60 sunscreen on my face because it wards off some of the worse skin reactions I’ve been getting from chemo. [picapp align=”right” wrap=”true” link=”term=vitamins&iid=75120″ src=”0072/57a8ada8-7752-454a-97d8-48b728fcafba.jpg?adImageId=10054508&imageId=75120″ width=”234″ height=”351″ /]

With breakfast I take 12 more capsules of various different stuff that would take too much space to describe here. After breakfast I drink a protein shake that has a few other powders in it, one of which prevents peripheral neuropathy. Most people who are on this particular chemo as long as I have been end up with  numb and tingling toes and fingers and sometimes that never goes away.

I get a break from pills at lunch, but mid-afternoon I take two more mushroom extract pills, and 10 more capsules with dinner. Some time in there I also now have to take an antibiotic to fight the skin infections I’ve been getting as a result of a trashed immune system. This antibiotic must be taken on an empty stomach, can’t be taken with the mushroom capsules, and can’t be taken within one hour of an iron supplement or a dairy product — I take an iron supplement both with breakfast and dinner. The antibiotic is also hard on your stomach so it’s not advisable to take it at bed time. This is a major puzzle for me, but I’ve been finding a slot here and there to take the thing.

At bedtime I wash my face carefully and put on a gel that, again, helps fight a bad skin infection that flares up on my face on Tuesdays after chemo. Nice, eh? I soooo look forward to purple-face Tuesdays. I also have more of my anti-neuropathy powder (L-glutamine), another powder that helps my digestive system, and some melatonin to help me sleep. Sometimes I also take a Benadryl if the chemo has been giving me a rash.

So, there you go. A day in the life of someone who feels like she’s fighting chemo more than cancer.

[picapp align=”left” wrap=”true” link=”term=bleach&iid=162333″ src=”0158/11b772c6-163c-4770-b4d2-f64d608abd0d.jpg?adImageId=10056800&imageId=162333″ width=”234″ height=”351″ /]Oh, and a couple of times a week I need to take a bleach bath to, again, fight that skin infection, which turned out to be a strep infection of the skin rather than a staph infection, which is more normal for the skin. But, hey, nothing acts normally when you’re being poisoned regularly with chemo. (Bleach bath: 1/2 cup bleach to 40 gallons of water, which is the amount in a normal bathtub. Soak for 10 minutes 2 to 3 times a week. This is, apparently, also helpful for eczema, MRSA, and staph infections of the skin.)

And then, of course, there are all those doctor appointments. Seven in a five-day period is a record, but I can expect to go to the doctor a minimum of twice a week unless I put my foot down and tell them I don’t want to see them or hear from them for at least two weeks.

Please note that I’m not complaining about all these pills and other maintenance. They are definitely working to make me feel as well as possible and I have how I felt with my first chemo five years ago to use as a baseline.

I hope this helps you understand why many cancer patients run screaming out of their doctors’ offices, never to return. It’s oh so very tempting.

17 Comments leave one →
  1. Maria Murray permalink
    February 8, 2010 10:59 pm

    Wow! I’d need a couple of weeks of memory exercises just to be able to keep up with the regimen. But if it helps, it’s worth it – and then eventually back to the hiking, etc.

    In the meantime, it’s OK to complain, not that you are. When I was a kid, my next door neighbor suffered from an unusual heart ailment and had to take tons of pills every day to live. He was a wonderfully kind and gentle soul; when he’d see me out raking the yard, he would bring me a glass of wine – I was 12, mind you. Anyway, he never complained. One evening, I was alarmed to hear a huge crashing sound next door. Overwhelmed by the frustration of his medical “maintenance,” he had lost control and broken his own door down! He laughed about it later (and repaired his door), but I think a little complaining along the way might have been a good thing.

    Glad all the stuff helps. We’re praying for you.


    • Jill permalink
      February 9, 2010 7:31 pm

      Wine for a 12 year old? Wow! I definitely understand the door. I might have to do that some day. Thanks for the prayers. Say hello to Justin. I hope Dartmouth is being good to him.

      • Maria Murray permalink
        February 9, 2010 8:06 pm

        Actually, I saw Justin last weekend – I flew up to hear him sing with the Glee Club – they performed Mozart’s Requiem (he’s a tenor). It was fantastic. He’s doing well, though he’s wishing for more daylight hours. I guess we could all use that!

  2. February 9, 2010 10:56 am

    Definitely ok to complain…in fact, it’s probably good to vent and express your feelings. That’s alot to keep up with!

  3. February 9, 2010 10:57 am

    Also curious to hear what advice you have for other women going struggling to keep up with new schedules & responsibilities…how do you stay organized?

    • Jill permalink
      February 9, 2010 7:30 pm

      Hmmm…. I have a few coping ideas. I’ll think them through and reply later.

    • Jill permalink
      February 9, 2010 9:19 pm

      Things can certainly be chaotic. There are the small obvious things you can do, of course. For example, I make sure to have all the meds/supplements written in one place. Then I have a couple of weeks worth of those pill sorters you can get at the pharmacy — jumbo size. I put the list in front of me along with the pill bottles and sort everything all at once. That way I don’t have to spend time counting pills every day and can simply sit and swallow.

      Also, as my mom showed me, it’s easy to copy the list and just bring it to doctor’s appointments. They always ask what meds you’re taking, and you can just hand them the list.

      Another obvious thing is to keep a calendar. I tend to be lazy about this and keep it in my head as something of a brain exercise. I have everything written on a wall calendar at home, but it can be confusing if you’re at a doctor’s office and they want to schedule something. Anyway, do as I say not as I do. Keep a calendar with you.

      The best thing you can do, though, is to be a cranky cancer patient and don’t let the doctors and their staff push you around. I don’t mean that they push people around intentionally, but you have to assert yourself and make them act like a service rather than like they’re doing you some big favor by poisoning you once a week.

      One way I do this is to choose a day or two a week where doctor’s appointments are verboten. I don’t see doctors on Tuesdays and I’m thinking of adding another day to the no-doctor zone. It’s not that I couldn’t see them, I just choose to make those time for me and my family only. Then I try to do something fun. Sometimes “fun” is napping all day, but at least I don’t have to think about driving to the hospital and reading the latest issue of People yet again because the doctor is running and hour behind (again).

      Many times I’ve been captive in the chemo chair only to have a nurse come out to say, “We scheduled you for a scan next Tuesday at 7:30 a.m.” It makes me extremely happy to say, “I’m not available on Tuesdays, and furthermore chemo has made it such that I can’t get anywhere by 7:30 a.m.” Then I give them days and times that are good for me.

      Speaking of late doctors, feel free to reschedule and walk out. I’ve given my doctor a few “late tickets” based on the number of times I’ve caused him to run late because I had something intense to discuss. So sometimes I wait patiently. Beyond that, though, I no longer cut them any slack.

      And speaking of making appointments, for those of you who are used to spending time negotiating your doctor’s appointments at your convenience, it might surprise you to know how differently you get treated once they define you as “terminal.” Some of it is just the sheer volume of appointments you need, but it still astounds me how many doctors offices cease to ask you about your schedule and instead call to say “Be here on Tuesday at 3:00.” I guess when your life is shortened they figure you have no life at all.

      Again, I emphasize that doctors are running a service, and a very expensive one at that. Patients need to remember that they’re the customer and it’s always better to get treated like you’re in Nordstrom rather than at the worst dollar store in the worst neighborhood on the planet, especially when you’re paying a mint and a half to these people. If the staff is rude, if the doctor annoys you, if they make a huge medical mistake, if they push you around, either say something or find somewhere else. Taking control of your life will help you in taking control of your cancer. Ask questions. Assert yourself.

      Also, as I’ve mentioned before in this blog, I no longer ask the doctors to call me at home with scan results. In fact, I tell them NOT to call me unless I need to go to the emergency room right now. I figure if they have bad scan results it can wait, and if they have good news then I have something to look forward to. There’s nothing worse than being jumpy every time the phone rings. Your home should be a place of peace and recuperation, and phone calls, especially from doctors, are incredibly intrusive.

      This looks like a blog post in itself. Glad you asked and I hope it can help someone else.

  4. mom permalink
    February 9, 2010 11:24 am

    Yes, Jill, getting old, as is my case. requires one to be more organized than usual. I worked in a nursing home for a short time and the number of pills the older people took was alarming. We would make lists for the doctor and ask if this particular person could be taken off certain ones just to reduce the amount of pills they had to swallow. Amazing for you and for the oldsters. You are maintaining me too, my dear one. Thank You and God Bless You. Mom

    • Jill permalink
      February 9, 2010 7:29 pm

      Yes, I know. Just when one’s brain is slipping with age or chemo they throw all this stuff at you. ‘Taint fair. I think it’s a conspiracy.

      Love your picture, by the way. You got new glasses.

  5. February 9, 2010 1:05 pm

    I’ve had an antibiotic like that a couple of times in the past, where I just couldn’t figure out when the heck I was supposed to take it when the instructions were one hour before meals, or two hours after meals. Well, I eat every 3 hours since they fixed my faulty stomach valve. I don’t know what I finally figured out — probably skipped a snack and set an alarm for the middle of the night for a dose. I remember thinking we resemble our grandparents when we watch the clock for medicine time and are so fussy about exactly when we eat meals. But if that’s what it takes to feel good, that’s what it takes. You’re providing great insight into the details that no one ever tells you about when you’re living through chemo. Maybe working with such a complicated schedule of intake of meds helps the days go by faster. Hope so!

    • Jill permalink
      February 9, 2010 7:30 pm

      🙂 I forgot to mention that I have resorted to taking a few things in the middle of the night. It’s crazy.

  6. E Lis permalink
    February 10, 2010 8:27 am

    Jill – I wasn’t aware of a pill organizer that could hold that many pills?! I need to get one of those for my Dad. It has been years by now, that he started to haul his pills with him wherever he goes (total farm boy, as he uses a small lunch cooler to carry his bottles with him). He takes even more pills the last year or so.

    I vote for taking Fridays off from appointments! I have found since, I’m oooonnnly a single Mom in graduate school that the doctors also like to just tell me when I can show up for my son’s appointments. I guess Mom’s of special needs children also are just suppose to show up to be ‘graced by their presence.’ They always seem so suprised that – no, that time does not work for me or no, that day is one I have plans for. No need to tell them, my plan may be that I just don’t like that time or that day is one all for me! 🙂

    I also don’t get mail on Fridays. I stopped years ago, as I found ‘bad’ mail likes to emerge on Friday when you can’t call up the person who sent it to even find out anything — thus, now a weekend to worry. Which is also why I hate Friday Dr. appointments, as often the office is packed with people trying to get in before the weekend and if there are any tests … won’t find out any results until the new week starts.

    The bleach bath sounds less than pleasant.

    Continued good thoughts and prayers!

    • Jill permalink
      February 13, 2010 12:27 pm

      Yes, they make pill organizers that big, which is too bad when you think about it.

      Taking Fridays off is a good idea. I’ll add that to my list.

  7. Mame permalink
    February 11, 2010 8:37 pm

    Good for you, Jill, on taking a stand!

    Canadians tend to think that because we get so called “free” health care that we don’t have the right to complain about waiting for a doctor.

    I guess I’m not the typical Canadian because of the near revolt I lead last fall at the local hospital when I had H1N1 and waited for 7.5 hours in the ER to see a doctor. the ONE doctor on call. The other ones, I guess, were all giving out the vaccines.

    There is a statute of limitations on patience.

    It was me and a drove of fellow Swine Fluer’s that stood up to the 92 year old volunteer at the front dest and demanded in uniscence that we see a doctor or we take off our face masks and go hog wild.

    They say there is strength in numbers, and so it was. Within seconds we were all herded to our examination rooms, treated and released. I was the lucky one, who had developed pnuemonia and at least got to leave with a powerful mind numbing rx, small consoltation but it was better than nought. The others were told to go home and rest.

    I digress.

    I hereby anniont you the Chemo Diva, the Posion Princess, the Dutchess of Old Dutch.

    You demand good service and ye shall get it. Or you will unleash Her Royal Majesty, Miss Piggy of County Flu on them.

    I kneel at your feet and kiss your hand.

    Ewww. Might I suggest Javex with a lemon?

    Ellen, aka The Sultan of Swine

    • Jill permalink
      February 13, 2010 12:30 pm

      Free? Ha! I think you pay taxes, right. Just cuz you don’t write them a check doesn’t mean you’re not paying.

      Good for you on your revolt! (I think we have that same 92 year old volunteer in our local hospital.) I would have loved to be a fly on the wall to see THAT.

      I think I’ll be the chemo diva. Good idea.

  8. Colleen permalink
    February 12, 2010 6:53 am

    Jill, Hank, and Daniel,
    Thinking of you and wishing you a Happy Valentine’s Day! Love, Colleen and Ed

    • Jill permalink
      February 13, 2010 12:31 pm

      Thanks, Colleen. Good to hear from you again.

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