I had 3 weeks of sheer misery after Chemo I-1 (first course of chemo first treatment). But I today want to share how much better I am and the efforts I made to relieve my particular issues. They tell me everyone’s experience is different. Treatment always needs to be tailored for the individual.
Several days after I weaned myself from the pain pills, the brain-fog lifted enough for me to realize some of this misery was due to the cancer, some the operations (biopsy and medi-port install), some chemo; and some was unintentionally self-inflicted. I was not thinking. Also simply was not able to do a lot due to the dizziness and fainting. So I didn’t do easy things like putting on my knee supports (knit tubes which apply compression) or wearing compression when my back hurts. Several of my issues were caused by improper body mechanics. I was either in bed, in my chair (maybe in some weird position) or making a mad dash to pray to the porcelain god (my offering was often placed on the floor or front of the god.)
About a week after the first Chemo I-1, my appetite returned. I am eating more and better than I have in about 3 years! I gained 6 of the 8 pounds I lost those first weeks. (Wonder if the extra food helped with brain-fog, dizziness, nausea or vomiting?) I crave salads, fresh veggies. Even add them to sandwiches and eat them like snacks. Can you say lettuce roll up? I can make 2 in about 2 minutes. Eat them just as fast.
With the nausea/vomiting (N/V) gone and appropriate compression, I could be on my feet for longer. Showering now included washing everything except the feet. I had to sit immediately after the shower and washed them there. I could start caring for my skin better. My lotions stopped the dry, flaky, itchy skin (Yahoo!!!) and my body enjoyed the light massage –. which DH would have done but I never thought to ask. I blame it on Brain-Fog. Finally I started making myself get up and walk the same household (bed, toilet, chair) short distances every hour. I became a little less wobbly. Definitely pleased that I no longer staggered, only wobbled.
I had to “feed the vampires” (blood work ) twice before Chemo 1-2. Even though my walking was improving, trips to the lab were not easy. First I had to walk the gauntlet between easy-chair and car. We didn’t take the close vehicle. No I insist my car be kept clean and backed into its parking place in the car port. DH had been terribly busy what with taking care of all my needs and assuming my chores, so he had shoveled a path, through all the multiple South Dakota snow falls, about 3 foot deep and 18 inches wide. No matter how well and often you shovel, ice will form at the bottom where you walk. So 5-10 min before I wobbled to the car, he was out there sprinkling salt, like flower girls sprinkle flowers at a wedding. I made it. No slips. Even enjoyed the fresh air a bit.
Next, unlike the big medical centers and offices in Sioux Falls, my 15 minutes away, local lab did not have easy access to a wheelchair. They round-one-up which would have taken 5-10 minutes. Always impatient, I decided to walk the whole short distance. Well, I thought I made it through their ice-nasty parking lot, a couple of yards to the lab wouldn’t be bad. For someone still clinging to walls and stuff along their route when they walk, this was a mistake. Our sweet and pleasant ‘Guide” took us to the lab where we were directed to the office across the hall in which the staff could check me in and download the Sioux Falls records. Yeah, rural medicine is still catching up. We know it and think this is normal. No complaints needed, especially since everyone is sweet, attentive and apologetic. Fortunately, DH sat me in the waiting area and did all the line/counter standing while the staff worked, quickly I should add, to get the 5-6 papers the lab needed to feed the vampires they keep in the back. (Ever notice there is at least one rather large room you can never see or get into? That’s were they keep either vampire bats or the coffin for the vampire. I’m telling you that room is always there in the lab with the blood.)
It was well worth all the effort because the results the next day (before Chemo 1-2) were incredibly GOOD NEWS. My tumor markers dipped from 3000 to 812. During the teleconference (I am able to get labs with 15 min of home, Chemo 1.5 hours away but surgery and somethings have to be done where my oncologist 3 hours away. Teleconferencing with the Sioux Falls office makes the first 2 shorter trips possible. A real blessing in my mind and life). Anyway, during the teleconference the Oncologist says that kind of drop is unheard of (2188 he called it ‘almost 2200’.) So he wanted the same Chemo mix (he’s hoping I can drop all the way to normal, 35, before the hyster). The RN (1.5 miles away in Pierre) and he concentrated on the side effects and lectured me about not calling. They said the goal was for the side effects to be tolerable and what I was describing was torture.
Concerned with hydration, I now have a PRN order at the lab 15 min away for a saline, sucrose or potassium drip. I’m not clear on that. I’ll take whatever they want to hook up. The order is for anytime I want which will be anytime I do not daily get 64 OZ of fluid in me. I plan to call first and see if that speeds up the process. Maybe I can borrow a wheel chair–if I still need one.
Except for magnesium. all my other labs were OK. They were down where expected (and I got the impression needed) but not far enough down to need help. Since potassium and magnesium usually track each other, I have scripts and directions for both minerals. They encouraged me to drink more and since SD weather is kind of bad right now they encouraged me to walk around the house more and more often. Big thumbs up for good appetite. They said not to worry about eating too much or gaining weight. Got a new N/V med which happens to be the one I have for reflux and successfully used to control the N/V of the first few days. (The others barely helped and once I started heaving, I couldn’t stop). The “new” N/V med just has a different name which I didn’t recognize and I couldn’t remember the name of the med which I successfully used during the teleconference). In a way all is good because while we were discussing the N/V meds and timing methods, I kept thinking why would I play around with a different med when I have something that works? Monday I will call the RN and confirm what I read on Google is correct i.e. both meds are the same. It wouldn’t be the first time I’ve made an error, or Google either.
One real source of great misery we barely talked about is my runny nose. My sinuses went into overdrive. I was blowing my nose every few minutes. Even DH noticed the kleenex mess. My nose became inflamed like an old drunk’s. I was getting minor bloody noses from blowing and, you guessed it, picking. The Navage helped but couldn’t pry some of those crusts free. I sent DH out buy everything on the shelf that might help dry up the nose. Robitussin did help but brought back the dizziness and fog-brain. The runny nose was bad and the resulting cough was a real killer. I continued wearing adult diapers because I’d discharged a little urine every time I sneezed or coughed. With the Robitussin, the nasal discharge decreased. Still had all the other symptoms plus now the urine to cope with. Slowly the sinuses got better. I could wear regular “granny panties”. I blew my nose less but developed a nagging dry cough. Once it started, it wouldn’t stop until I vomited. Doc said this is quite a common side effect of all my cancer-related scripts. He sort of left it up to me to try over-the-counter stuff and cope. Me, I’m calling for an appointment with my family doctor. She has been monitoring the allergies (diagnosed allergic rhinitis) and stepping in with a shot some SD Autumns when I get almost this bad.
My Oncologist’s says I can expect to have the same issues about the same time after each treatment. We are keeping the same Chem mix going because of the great results But I can’t keep tolerating the nasal discharge. I want drugs. I am willing to accept “use only during Chemo” but I want a drug to calm the sinuses. I believe the family Dr will step in. She may want to talk with the Oncologists first. The Oncologist may not have understood how bad this is for me. We talked about a lot of things. Maybe I didn’t talk enough about this symptom. Family doctor knows what an issue my allergies have been for many years. She will be honest with me too. She will tell me if I am whining or if I have a reasonable demand. I like that. I believe the body is prejudiced towards health, wholeness. We are responsible for properly feeding and otherwise caring for it. Not to say that illness doesn’t happen or that anyone or thing is to blame. I absolutely call the doc whenever I have issues AND I take their advice. What’s the point of going, if your just going to discard their recommendations? Feel like I have a great open relationship with her and she respects if not completely shares my opinion. So I am going to see, listen and do what she says!
I am feeling much better. I would still say less than 60% (talk more about that 60% later). Like I can stand upright and make it to the bathroom. I can shower fully no just rinsing (except for the me-port) Trimmed the hair to 1/8” on day 15. Interestingly whatever isn’t falling out is growing (current length 1/4”) . So easy to wash and pat dry. Looks odd to me but DIL says I’m one of the few who can pull it off (that girl is a keeper!). I am not shivering, not feeling so cold which I think is largely due to getting up and moving about. Never realized how much I do move in my routine activities. Even sewing, I am up on my feet moving about. Being sick, I wasn’t moving much. Not sewing at all-couldn’t navigate the flight of stairs. I can see my leg muscles atrophied. Having to build them up. My knee popped taking the 3 front steps the last time I returned from feeding the vampires. So my mobility is really limited. Also still coping with the cough. Since I am feeling so much better and since I know my reaction to chemo, I am hoping to control most of it. Make the side effects tolerable instead of debilitating. Yes, I promised and will call if I’m miserable instead of tolerable.
BEST NEWS OF ALL after Chemo 1-2 (Friday) and all the steroids they gave me. I went downstairs to sew on Saturday. Actually, I did a lot of cleaning, putting away and a little ironing. Serged the ends and prewashed the fabrics I have been accumulating. Yes I still have the issue “if I can’t sew, I buy). Had 3 orders less than 20 cuts of fabrics to tend too. With pleasures I might add. Bottom line, I feel like I”m 60%. I can do most of my normal activities, am eating well, most of the symptoms have calmed down but I need lots of rest. I need not to push a little but not a lot t continue improving. 60% that’s major. That’s over-the hump!
I cannot thank you, my readers, enough for your well wishes, your support, and your prayers. I will repeat the drop of ‘almost 2200’, from 3000 to 812 is unheard of. It is a miracle. The chemo did a lot of the work, but I believe the world-wide prayers worked at least a part of this miracle. Please continue to pray for me. After all, prayer never hurts and moral support in every form is documented to help,
love you all