11-Jun-18
Started daily pelvic radiation for a month, 5 days a week. Also starting week 1 of chemo: mytomycin infused at hospital and then at home nurse attached chemo bag with fluorouracil (5-FU) for continual administration for five days.
15-Jun-18
Chemo bag off on fifth day. Really nasty. Have to keep the bag on all the time, including in bed at night and had trouble sleeping. No side effects until today. Had diarrhea, which stopped with 2 pills of Imodium and 1 more a couple hours later.
16-Jun-18
Regular movement. Went to see Deadpool, funny, then out to dinner. Sore mouth.
17-Jun-18
Sore mouth and throat. Salt rinse. Diarrhea and projectile vomit in morning. 2 Imodium for diarrhea and 2 ondansetron (Zofran) for nausea. Nap and cheese sandwich at 2 pm.
18-Jun-18
Severe diarrhea, and took Imodium twice. Vomiting twice, so also took Zofran twice. Was prescribed dexamethasone rinse for inflamed throat and mouth. Met with Dr. Savage. Tumors appear to be receding already.
19-Jun-18
Saline Infusion in hospital after projectile vomiting along the Thruway on our way to Albany for radiation. Taking Zofran daily now.
20-Jun-18
Zofran preventing nausea, but mouth and throat sores still prominent. Took a steroid rinse (dexamethasone) for sores. Was told to increase water intake to prevent serious radiation side effects.
21-Jun-18
Mouth sores receding but still can’t eat solids. Made avocado sorrel soup. Meds still keeping nausea in check. Now constipated.
22-Jun-18
Mouth sores better but still no solids. Cut back on Zofran and had watery movement. Stopped dexamethasone rinse, which I hate. Just baking soda rinse now. Hope it works.
23-Jun-18
Diarrhea and blood this morning. Took Zofran at ten and then at noon after another vomiting bout. Diarrhea resolved. Took Advil and ate chicken soup and rice pudding for dinner (yay). Took Zofran at 8:45.
24-Jun-18
Two Imodium at 11:30. Had two watery movements. Able to eat normal meal. Low appetite. Some mouth pain.
25-Jun-18
Copious bleeding in AM in shower. Easy day otherwise. No bowel movement. Mouth sores almost gone. Could eat, although low appetite. Mowed flower garden.
26-Jun-18
Feeling good, but major bleed with clot in the bathroom of the restaurant where I was having lunch with a friend. Bleeding continued in afternoon. Mowed front lawn. Tiny bowel movement at nine.
27-Jun-18
Two ulcers in groin that need soaking in saline gauze. Didn’t notice them. Feeling good today. Constipation partially relieved with prunes.
28-Jun-18
Continued soak on ulcers. Increasing fatigue. Wearing skirt commando style, so nothing is touching my radiated pelvis.
29-Jun-18
Continue to wear skirt commando style. Very helpful. Took Zofran and Advil. Constipated. Had prunes in afternoon.
30-Jun-18
Bleeding at night. Prunes and yogurt for breakfast.
1-Jul-18
Prunes ended constipation.
2-Jul-18
Feeling ok. Hair falling out in the car on the way to radiation treatment in Albany this morning.
3-Jul-18
Feeling ok. Got my hair shaved off.
4-Jul-18
Feeling ok. No radiation today. Holiday. Yay. Wearing chemo cap.
5-Jul-18
Feeling ok. Decide to go bald. My head looks ok.
6-Jul-18
Chemo effects from first week mostly gone. Applying lots of Aquaphor daily and often for radiation burns. Still just taking Advil or Aleve for pain.
7-Jul-18
Only Aleve and lots of Aquaphor today. Easy weekend
8-Jul-18
Same as yesterday
9-Jul-18
Nurse came to the house for second and final week of chemo. Infused Mytomycin and attached bag of 5-FU at 7:30 PM. Will continue again all day for five days. Not looking forward to return of side effects.
10-Jul-18
Not allowed to apply Aquaphor before radiation and had intense burning on movement. Took oxycodone, immediate relief. Dexamethasone rinse four times and Zofran twice. Still hate the chemo bag but figured out how to sleep with it this time.
11-Jul-18
So far no mouth changes. Slight constipation with small movements. Continue regimen of dexamethasone rinse four times, Zofran two times. Oxycodone in the morning and Aleve twice a day. Have been wearing skirts commando for about two weeks now. Lots of Aquaphor.
12-Jul-18
Continue yesterday’s regimen. Changes from chemo make food taste like it was grown and cooked in a toxic waste dump. Maybe this is the way food really tastes like!
13-Jul-18
Continue regimen but took 2 Oxy. Bag off at 7:30. Diarrhea and vomiting at night.
14-Jul-18
Major explosive diarrhea and vomiting this morning. Took Imodium and Zofran second time after throwing them up. Cold and shakes. Slept and slept. Dry mouth.
15-Jul-18
Threw up/explosive diarrhea around 5 AM. Took Oxy, Zofran. Imodium. Had sips of Ensure at 8:00 am, which is sickeningly sweet. They should shoot whoever invented it. Nestle is the Evil Empire. Possible oncoming sores. Late morning more combo shit/vomit
16-Jul-18
Ongoing diarrhea, very low white blood cell and neutrophil. Can’t eat. Want to sleep all the time. Got Infusion in hospital for rehydration after radiation treatment.“You have no immunity,” doc says.
17-Jul-18
Had another Infusion for rehydration in hospital today. Very painful burns. Boosted Oxy intake. Changed from over-the-counter Imodium to prescription Lomotil.
18-Jul-18
White blood cells tanked. Admitted into hospital at least till end of radiation treatment. Being pumped with antibiotics and morphine and other stuff. Peeing excruciating and makes me scream and cry.
19-Jul-18
Crazy morphine hallucinations. Want to remember how they alternate between dream and reality. Getting ant-fungal medicine for mouth sores
20-Jul-18
Last day of radiation! Still in hospital. Dealing with urination. Getting meds for urinary tract infection (UTI) and thrush. Painkillers as needed, but they don’t really control acute burning. Still using bedpan. Trying to control muscles and release urine gradually. Walked to bathroom once. No spillage.
21-Jul-18
Still hospitalized. Burning worst in morning. Use bedpan and release very slowly while spraying gently with peribottle. Breathe in with burn. Then breathe out. Slow, slow. Walked to bathroom later and did soaks. Walked again. Urine sample contaminated, but I might not actually have a UTI. Everyone with this treatment burns!! Working out process with Michael. Home tomorrow.
22-Jul-18
Home. Took two showers. Comfort punctuated by some shooting daggers into my bottom. Drank chicken broth and orange juice. Had shakes at night and hope it’s not my cell count tanking. Taking two antibiotics: Levoflacin (Levoquin) and Nyastatin. Swollen feet. Hope that’s only from the hot shower.
23-Jul-18
On Advil 4 times a day, Oxy as needed. Last day for Levoquin. Still swish with nasty Nyastin. Had yogurt and apple butter for breakfast. Chicken broth and jello for lunch and dinner. Nice nap that helped with pain. Oxy and Zofran at midnight
24-Jul-18
Movement at around 7:00 AM, partly in shower. Yuck. Very very sore. Two naps. One in morning and one in afternoon. Mouth sore a little worse. Doc says to soak until skin is dry and then I can use Aquaphor again. (My daughter's 49th birthday.)
25-Jul-18
Very sore anus and burning urine. Depressed today. Feel this will never end. Lymphedema means I’ll have piggy feet forever, which may not be that long. Rain also lasting forever. Had chicken soup with stuff in it, not just broth, and tasted ok. Mouth sore on tongue still bad.
26-Jul-18
Had weird and awful response to Nystatin. Swallowed wrong way and burned my throat. Stayed creepily irritated all day. One nice well formed poop. Mouth sore diminishing, but sore throat with Nystatin weirdness remains. Gargling with salt. Was able to down chicken soup with stuff in it again. Low platelet count. Off to Albany tomorrow for blood transfusion.
27-Jul-18
Horrible sore throat. Managed to get Advil down and started hitting the throat with ice. Went to hospital for transfusion. Nurse identified abscess. I sneaked in 2 Aleve. Was able to eat soup and abscess exploded. Seems to be gone.
28-Jul-18
Sore throat gone. Lots of puss. Bowel movement painful. Advil and soak.
29-Jul-18
Got up in early AM. Bowel movements hurt and bleeding. Took Advil, went outside for walk to garden and compost pile. Drank OJ and threw it up. Lots of mucous and bad taste. Hope this means I’m cleaning chemo out of my system. Had a little lemon ice cream. Good. Also good response to spinach and ketchup on hot dog roll, although not hot dog itself. (My youngest grandson's 13th birthday.)
30-Jul-18
Trying to avoid bowel movements and heal skin. Showers and soaks. Advice to other Chemo takers: best supplement drink is Bolthouse Farms chocolate Protein Plus. Ensure should be buried in lead lined tanks so it can't leach into the earth.
31-Jul-18
Upped Oxy to 2 pills. Pain got to me. (My older son's 50th birthday.)
1-Aug-18
Two Oxy pills 3 times a day. Senokot at night for constipation. Cooked but little appetite. Down 15 pounds.
2-Aug-18
Stopped taking Oxy. Took 2 Advil but saw streaky red marks on leg suggesting low platelets. So stopped that and baby aspirin.
3-Aug-18
Still no Oxy. Don’t miss it. Skin healing.
4-Aug-18
Intestinal distress and nausea. Threw up everything in the PM. Series of little poops. Skin healing.
5-Aug-18
Just taking Advil. Side effects receding.
End of notes. No more vomiting or mouth sores and the start of recovery and healing. Last week, seven months later, I started pembrolizumab, an immunotherapy that I hope will halt or slow down my cancer's metastatic journey. The side effects shouldn't be as tough this time.
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