Today is a pure exhaustion day. It’s 9:17, I’ve been up and down since 2am (hip pain makes it hard to stay level, so I’m up, then down, then up, etc. You get it…)
I just walked to the dining room, moved a very small watermelon to the kitchen, cut it open, chopped 1/4 of it into a bowl, and I feel as though I’ve worked a full day on the factory floor.
Jobs I thought I’d be able to do are slipping from my hands, and the gratitude I feel toward Kathleen and Layla for picking up the slack is larger than I can explain or ever return!
Today is the first time I’ll be able to get in to see the Cancer Psychiatrist, and this is a visit that is LONG overdue. We were supposed to see her last week, but that visit was cancelled (it makes me sad because I wanted Max to have a chance to at least MEET the doc before he returned to school)
But I’m VERY grateful that it’s happening, and I’m going to try to
have the energy I need to make the visit really matter.
Couldn’t Come Too Soon
I’ve been so—stressed—over the past few days that I feel as though I’m coming out of my skin. Small things, totally microscopic and inconsequential things, drive me up the friggin’ wall, and I’ve screamed more in the past few weeks than I have in the past 45 years.
I leave my first 11 years out of that because heaven KNOWS
how much I screamed during THAT period of my life…
So I’m hoping that there will be some strategies that will allow me to be a nicer, better person around my family (who are going through hell right with me…)
AND I’m wondering if there might be some kind of drug that would help me relax…
The Ol’ MJ
Of course, that drug COULD be the Medical Marijuana for which I’ve been approved, but I’m STILL waiting for my Pharmacist interview I have to go though to actually get PRESCRIBED anything. Dang.
Mouth Of Sore
Aside from the mental wilderness into which my brain has wandered, physically the week of Chemo is catching up on me.
My mouth is one huge sore. All along the edges of the mouth, in the palette and tongue and along the sides it feels as though there’s a constant fire going on all the time.
Ice, jello, ice pops and cold drinks are my friends. Unfortunately, the more ice I take in, the more I have to make my way up to the bathroom for more good times, and the more exhausted I get. A vicious ice circle.
Swallowing is becoming very difficult. I think I need to start using straws, because even a small mouthful of ice water (or any beverage) makes it SO difficult for me to swallow. I fear choking, or at the least a coughing fit because THAT really hurts my chest so badly.
The only foods that really go down smoothly are ice cream type of foods, ice pops, mochi, kulfi, all kinds of iced dairy treats!
On a side note, due to the kindness of my neighbor, Kristen, I’ve been able to make a bunch of YoNaNa frozen banana dessert, which helps me get potassium to fight the leg cramps (another side effect haunting me all night) and allows me a creamy treat without a great deal of dairy, which can play havoc with my digestion these days…
My hair is starting to fall out (not a ton, but it’s very obvious in the shower) I KNEW that would happen, I was told by my doc, and it’s not something that troubles me too much. I’m cool being bald for a bit, and if my hair never grows back I think I’d be fine, too. I think…
The exhaustion has reached a whole new level. Just getting OUT of a chair takes me as much mental preparation as getting ready for the first leg of American Ninja Warrior*
Sitting up takes more effort than I can muster some days, and THAT is a very frustrating and frightening aspect of this recovery. I was prepared in part for the exhaustion, but I was NOT prepared for the weakness I feel in every aspect of my physical being. I can’t sit with my legs up and cross them without help.
This is — hard. That is the best word for it. Hard as a rock.
Audio hallucinations seem to haunt me before bed and when I first wake. Sometimes visual oddities pop up, too; feeling that I’m seeing — someone — out of the corner of my eye. It’s weird, but it’s also comforting in a way, as if I KNOW the voices I’m hearing and they’re just in the other room, laughing and having fun. This is weird, I know, but Gerry used to get the same sensation (and I think he still does sometimes) so I know I’m not alone in this.
SO here I am, whining and bitching, sitting and inviting all of you into my stream-of-consciousness moan about my health. Today is a rough day, let’s hope tomorrow is a better one!
*No, I haven’t actually PARTICIPATED in ANW, I’m just going by how impressively the contestants psyche themselves up before that first round…
Well, fuckity, FUCK, Annie. I hope some ease sneaks in the back door.
Your comment made me laugh! Thank you!
Ask for “magic mouthwash”, a concoction that I got from the U of M. They mix up a topical anesthetic and flavor with liquid maalox so it coats your mouth.
FINALLY got it prescribed today! YAY!!
There are folks in the medical field who specialize in pain management (palliative care). Demand that you get one of them to help you with your pain. When my son was being treated for leukemia we didn’t find out about these folks until late in the game.
I swear, some time the medical profession is slow at offering all the options they have for you. Maybe you have some more options.
I actually HAVE one, but it’s been a hard slog to get the right hand to speak with the left hand, if you know what I’m saying!
Oh, my. Your symptoms are exactly why I’ve sworn off accepting any chemo/ radiatiion treatments when the day comes that cancer surfaces in MY body. We all have it in one form or another. It’s just a matter of time until lifestyle or environmental issues activate the carcinoma. I refuse to go through the physical/emotional/financial turmoil to only delay the inevitable.
I plan on delaying the ‘inevitable’ as long as possible! I still have a couple of kids to see into adult-hood AND a husband to love and care for! But we each make our choices and decisions based on what matters most to us, and I DO respect that!
You are a perfectly normal woman enduring chemo! All those feelings/ symptoms/ side reactions— yep.
About the hair—- when mine started thinning, I had it buzzed at the shop. Then a few days later my fingers left bald skid marks across the fuzz & I had fallout stubble on the pillow.
Our cat licked at that stray shedding on the recliner, on the pillow, etc, & began throwing up. That’s when I vigorously scrubbed my head with a washcloth & the rest came out. The pets don’t need the side effects.
Oh! IF you don’t already have one, get yourself a shower stool— your dr can order one or ha e someone pick it up at the drugstore— around $20, but Sooo worth it. Get the one with the back. (Also the swimmers’ shampoo to keep your follicles open & help remove chemo residue.)
I’m sitting here, Not in treatment, but having a major fibro flare & other neuro issues, & a broken foot. I’m with you in spirit!!!
And if I can get the energy, I’m going to go into the kitchen& get some fruit.
Thank you so much for your validation and for your advice! Both are excellent!
Oh— get some ‘mouth moisturizer’— avail as a dental rinse, but also a Wonderful little spray to keep handy by the bed, by the tv, in your pocket— meds/chemo left me Always drymouthdd. Even after a sip of water. This stuff helped!! OTC, have them ask the pharmacist for that store’s version.
Hang in there!
I actually have some, it helps a bit, but it also stings. Very odd. Today the NP wrote an Rx for “magic mouthwash” so I’ll give THAT a try, too…
I’m so sorry it’s being this way; I hope that the meeting today helped, and that things even out a bit soon. Cancer sucks!
I am sure that all of us who are following you through your recovery wish so much that we could surround you with with a barrier to the pain. Instead, know that I, in MA, am sending you buckets of loving support.
Thank you!
Agreed! Annie that’s just what we all wish! We could be a bucket brigade to prevent the pain!
Know that we are out here cheering you on every day. Those voices you hear? Us. Cheering. For you. Wishing you health and happiness.
That’s lovely, thank you!
Just sending you loving thoughts and sorry you’re going through this. But the operative word is “through”. There will be an end to the treatment. <3
Hugs – very gentle ones.
I discovered that my anti-nausea meds actually MADE me feel anxious and like I was crawling the walls (couldn’t relax, couldn’t sit still, always a restlessness). Once they switched them to another type of anti-nausea meds, I lost that feeling — which was most welcome — so maybe check to see if some of your discomfort might be due to the anti-nauseas meds.
Once my hair was thinning, I had my husband buzz it off. Then, my hair stylist recommended some scalp oil with essential oils — and every night my husband massaged it into my scalp. It kept the itchiness at bay, and was a wonderful treat during a Not Good time. Also . . . I wasn’t actually prepared to lose ALL of my hair (somehow). Like . . . nose hairs. My nose DRIPPED constantly (because those nose hairs really do serve a function I discovered) — so keep a stash of tissues at the ready.
ENDURE, Annie. XO
Those are excellent suggestions. I’ve also been told to get a ‘swimmers shampoo’ to help keep the follicles healthy. SO MUCH GREAT ADVICE!
I’ve been reading your blog for ages and ages without posting and sending you healing thoughts now. A dear friend has brain cancer and she swears by CBD oil during chemo. She buys it online. I bet one of your kids could help find a reliable source. I hope you get your medical marijuana approved, too, that also helps.
I enjoy CBD oil, too! A friend turned me onto it earlier this year, and the source she uses, which I use now, too, is Bluebird Botanicals. I’ve been very happy with the quality of their oil, and they have a discount program if you happen to be on disability (which Gerry is, and I will be very soon…)