Saturday, July 18, 2015

A day in the life of a cancer patient (plus an update on how I feel)

There are a couple of reasons I keep this blog. For one, it's a handy way to keep everyone apprised of my progress. For another, it's cathartic. But another big one is for educational purposes. I hope that readers not only learn from my journey so they take better care of themselves, but also have better understanding of what someone goes through when they have cancer. What I want you to get out of this is not so much "Poor you, Jennifer!" as "Oh, now I understand why you're not getting much work done/hanging out with me/etc."

I mentioned before that having cancer is a full time job. I thought I'd talk today about what that really means. You've already read the litany of doctor's appointments and tests I've been to in the past couple weeks, but that's only part of it. There's a lot of self care I need to do:
  • Because the chemo reduces my white blood cell count, I am highly susceptible to infection. Infection when you're in chemo does not mean inconvenience; it means a likely hospital stay and possibly death. Even a cold could cause me serious problems.

    So not only do I need to make sure I wash my hands with soap before I eat and after using the bathroom, but after I touch the cats or anything that anyone else has touched, etc. This, on top of the fact that chemo also tends to dry out the skin, means I need to apply lotion all over every day to keep from getting too dry. This includes the inside of my nostrils. If any skin anywhere cracks, that's another opportunity for infection (besides being uncomfortable).

  • I need to eat 80-100 grams of protein per day to help my body maintain strength while pumping it full of toxic chemicals (chemo doesn't just target the cancer; it also targets me). That is a lot of protein, especially if your appetite is compromised. Of course, I also need lots of veggies, whole grains, and anti-oxident foods like green tea, almonds, etc. I eat at least 6 small meals per day to try to get it all in. I also take a multi vitamin, turmeric, and calcium with D3.
  • I need to drink 3+ quarts of fluid per day. That is a lot of fluid. Thankfully, it can be in just about any form but alcohol: water, tea, juice, coffee (one cup per day, yay! as long as my stomach is up for it which it hasn't been.), soup, even juicy fruits like melon. So not only am I constantly shoving food and fluid in my mouth, I'm using the bathroom about every hour when I'm awake and 2-3 times during the night. 
  • Chemo often causes a bad taste in the mouth that makes food unappetizing as well as sores in the mouth that make eating painful (thankfully, I'm not there yet). So, to combat this, I need to rinse my mouth three times per day with a solution of baking soda, salt, and water. 
  • Chemo is hard on the teeth. This means being fanatical about taking care of them: brushing three times per day and flossing daily.
  • I keep a symptoms journal, logging how I feel, when I take meds, whether they helped, etc. Also, I take my temperature three times per day or whenever I feel particularly bad and write it down. If my temp spikes, I need to call the doctor. If it hits 100.4 (not that high for most people), I go to the ER. Remember that point about infection being deadly? We are not messing around. 

That's just my job (in addition to resting). Then there are my caregivers and housemates:

  • In order to prevent infection, all surfaces anyone touches need to be wiped down several times per day with sanitizing wipes.
  • We are installing hand sanitizer dispensers inside the front door and outside the door to our bedroom. Everyone santitizes when they come in the house and before entering the room.
  • No one enters this house with a cold or any other illness. That includes all of Michael's kids' friends, anyone who wants to visit me, the respite care workers for Michael's mom, etc. 
  • If anyone who lives here gets sick, I am sequestered in my bedroom until they're better and they cannot come in here.
  • When preparing food for me, hands and surfaces are washed religiously, all food is washed, proteins must be cooked thoroughly, we have to be extra diligent about cross-contamination, and I can't have anything spicy. Most of that is good practice anyway, but most people slip. We can't. 
With all that out of the way, here's my update on how I'm doing:

It's day four of the first chemo cycle. I have not taken any anti-nausea meds for over 24 hours and I've slowed way down on pain meds. I don't feel fantastic, but not bad...and not bad is pretty good at this point. I think I'm past the worst of it for this cycle and hopefully I'll feel a little better over the next few days. Sorry for the TMI, but I started my period last night, which is not helping how I feel overall. Completely unfair....chemo is supposed to stop them, isn't it? Maybe I was too far into my cycle when I started and this will be the last one. Like I need this on top of everything else.

I had a little breakdown when I started to worry the chemo wouldn't work. I don't see much change yet, but I don't know how much I'm supposed to expect or how soon, or how long the chemo does its work after the day you're treated. Something I need to read up on. What if it doesn't work? Or what if it's working more slowly than the tumor is growing, and the tumor does something horrible before the next treatment? Really need to do more reading on the science of it and how it works and maybe that will make me feel better. On the bright side, there is some bruising that's been present on the bottom of the affected breast for quite a while. It receded when they drained out the fluid the day they did the biopsy but came back when all the fluid came back. It seems to be receding again. Also, maybe the breast is a little less rounded and swollen. So maybe I should calm the hell down and be patient. There's a reason I'm getting 8 treatments, right?

Every time I see a blue hair lying somewhere, I think, "Is this it? Is the hair loss starting?" They say 7-10 days after the first treatment, so I'm probably being ridiculous. Plus, my hair grows really slowly and it's the fast-growing cells the chemo hits first. Plus, I shed like crazy all the time anyway. My scalp does tingle, like people say...but is it psychosomatic? My friend Sandy is standing by to shave my head with her clippers once the hair loss starts so I don't have to deal with the emotional, drawn-out process and clumps falling out.

I think that's enough for today. TL;DR: I'm doing OK for someone who has cancer.

Thanks for hanging in there with me!


  1. That is a lot to keep up with. I'm sure y'all will do well with it. I have no idea when chemo starts working either. I hope you can tell more changes soon. I'm still praying.

  2. Yep, hanging in and hanging on for you! Keep those hands CLEAN! :)

  3. Keep up the good work! Breakdowns are inevitable.. Don't beat yourself up for having them. Hugs!

  4. That is a lot of protein! I didn't have to eat any certain amount of protein or fluids. I wouldn't have been able to do it. When I am sick- carbs are usually all I can choke down.

    Hard candy or mints are a must. It will help the nasty taste. I had a problem for a while where everything tasted sweet- even water. It was gross.

    Did they tell you to wash all fruit and veggies- even if you are not going to eat the outside? The knife cuts through the outside, putting the bacteria into the food. The hospital had watermelon available at all times that had been washed carefully before being cut for the transplant patients.

    Also, no cantaloupe. Because of the texture, it is hard to wash all the bacteria off the skin. When I was getting chemo, there had been a salmonella or ecoli outbreak on cantaloupes and a lot of people were getting sick.

    Check with your dentist about the teeth brushing- you don't want to brush too much that you take off the enamel. I don't have much left on mine and cold hurts so bad!

    As for your period, I hate to tell you I had mine for 3 months after- I believe. My gyno gave me a prescription that stopped it and when the pills ran out it never came back.

    Give the chemo time to work. It is going to take a few more I think. Careful doing research. I didn't want to learn about the odds and stuff because I knew mine were low, but someone wrote an article and put them in. It kinda kicked my butt.


  5. I'll tell you, same for me as Rissa on the research, because sometimes, it was a real downer for me. My condition doesn't have a lot of stats and the stats it does have are quite depressing. So be sure you're in a positive frame of mind when you go read up on things, so that the numbers don't get you down. You're not a number. You're a human being who is going to beat all the odds!

    We're with you for the long haul!

    Love and stuff,

  6. Yeah my doctors have not talked about odds or statistics, and I'm grateful. It doesn't matter... I'm winning this battle, no matter what the numbers say!