Entry 1 8:54 a.m.
Willow has learned to fly, or so she thinks. Last night, as Jenny was laying on the sectional, Willow came around the corner, jumped and cleared the back of the couch. She pulled off a perfect four-point landing. She literally stuck the landing. Unfortunately, by stuck I mean she landed on Jenny's chest where the needle from the chemo pump enters the port to her vein. Jenny didn't see it coming. Neither of us did. Jenny, after pushing off a clueless and cuddly behemoth (its like cuddling Wm. "Refrigerator" Perry as a toddler at this point), doubled over, more in fear than in pain. But finding her port was secure, she wss still understandably shaken and also angry. She went to bed.
This morning, she woke to find the chemotherapy drug FolFox leaked and leaking all over her clothes, and the needle completely out from the port. She bagged the pump and needle, and called Dr. P. The best laid plans, and all that. He told us to be there by 8:30. I drove to VM in 20 minutes, laughing in the face of the morning commute gremlins. And here we sit.
As we drove away from the house to come here, Jenny said, "I just want to be dead, I don't want to do this anymore." This is a familiar refrain. Hard to deal with at any time, but sans coffee and with Jenny generally angry, it just is terrible.
Entry 2 10:26 a.m.
Jenny's all fixed. I was warned by the oncology RN not to let the chemo touch me. Apparently 5-FU (one type of chemo in the bouillabaisse of chemo known as FolFox that is administered through her pump) is quite caustic. The RN got a drop on her leg as a young nurse 20 years ago, she is older than Jenny, and still has a white spot on her leg caused by the 5-FU. This chemo is brutal. Here are common side effects of FolFox:
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COMMON, SOME MAY BE SERIOUS
In
100 people receiving FOLFOX (Leucovorin, 5-Fluorouracil, Oxaliplatin), more than 20 and
up to 100 may have:
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· Hair loss
· Hand-foot
syndrome (palmar-plantar erythrodysesthesia) redness, pain or peeling of
palms and soles
· Rash, increased
risk of sunburn, itching
· Diarrhea,
nausea, vomiting, constipation, loss of appetite
· Difficulty
swallowing
· Sores in mouth
· Heartburn
· Infection,
especially when white blood cell count is low
· Anemia which may
require a blood transfusion
· Bruising,
bleeding
· Headache
· Tiredness
· Numbness,
tingling or pain, "pins and needles" of the hands, feet, arms and
legs
· Tingling or a
loss of feeling in your hands, feet, nose, or tightness in throat or jaw, or
difficulty swallowing or breathing which may be made worse by exposure to
cold air or cold drinks which feels like you are touching or swallowing broken glass
· Cough
· Fever, pain
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While at VM, I raised the issue of the CA 19-9 test results that haven't shown up in Jenny's chart with the RN. Yesterday the nurse inadvertently ordered a CEA test, a different cancer antigen test not used by Dr. P to this point with Jenny, and did not initially order the CA 19-9. Jenny inquired yesterday while receiving treatment, and found out the CEA test order was a mistake, and was also told they would order the CA 19-9 test. No results were present when I checked repeatedly last night, nor again this morning. So while in Short Stay where Jenny was getting reattached to her pump, I asked the nurse about the CA 19-9 test. She looked into it, only to discover the order had been cancelled because she made a mistake when entering the order. The lab assured her this morning, I overheard, it would conduct the test today as they still had the specimen, and it is still good for testing. So, I am waiting for the results. Jenny was annoyed I had asked. She didn't want to bother. "It's just going to be elevated anyway, I haven't had chemo in a month." True, the last round was delivered July 15. However, I want to know as much as I can, so I can feel more in control. She never checks her CA 19-9 level herself, or rarely checks it herself, anyway. So, I'm keeping my fingers crossed in the hopes the results show up this afternoon.
We got done, and headed back home. Jenny is cranky and short. Just with me. I know I'm safe, but it gets tiring. Very tiring. Very, very, very tiring.
I have some caffeine on board, which helps,
We learned that it is faster to get to and from VM from our new home, than the trip to and from our old place -- a nice surprise.
Entry 3 11:21 a.m.
Jenny has lost 6 pounds since July 29, and is at 161 lbs. Additionally, the side effects from the new chemotherapy regimen are beginning to show up. Jenny tried to drink a cold drink this morning, and she almost choked. She described it as feeling as if she were swallowing broken glass. It causes laryngeal spasms, the cold, which feels like you are choking. She can't touch or drink anything cold, and I am not glad this chemo is starting in the summer. This symptom takes about 5 days to dissipate, but the further along you go, the longer the symptoms persist.
Entry 4 3:29 p.m.
Jenny walked down the hill to the mailbox and back to retrieve the mail from the lockbox we use. It is not quite a city block away. I had no idea she had gone. I was on a work call when into the kitchen she comes, sobbing like her cat had died. I got off the phone immediately, and asked what was the matter. She told me it was so hard walking back up the hill she thought she was going to die. To make it worse, she stubbed her toe so hard it was bleeding. I got her into a chair and helped clean her up, got her a bandaid and she then moved to the couch. Fuck cancer.
Entry 5. 9:30 p.m.
Tonight, Jenny was in rare form, angry at the world, angry at me, screaming at me like old times.
After I made dinner and we had eaten, she retreated to the sofa, suddenly upset. I guessed this as I got up to clean and spied her and our eldest on the couch. Leiney had run after her, I think Jenny may have been crying. They shared a tender moment, before Jenny and Leiney returned to the kitchen to help clean. Abby did one of her famous disappearing acts as soon as dinner was over, apparently either forgetting or ignoring my statement that the kitchen is big enough that now four ppl can clean it together. Whatever, I have bigger fish to fry right now. Jenny was in a mood. At the dinner table Jenny said to those present a) she wanted us to clean the kitchen together after dinner AND b) she would like someone to help her make her bed because it's too hard for her to do it alone right now.
We finished cleaning, and both went and sat on the sectional, and she continued to binge Working Moms, as she had been doing all afternoon. She watched 3 episodes between the time I finished work at 5:15 and dinner. I know because I sat in the living room amazed at how she just gets to own everything all the time. Please note that she was not interested in socializing. If I spoke, she became visibly annoyed and was short and curt with her answers. The binge-watching not bothersome today, because, Christ, chemo. But no thought of anyone else but herself. Anyway.
So, its after dinner and I am sitting on the sectional again. The dogs need to go out I am leashing Willow when my phone rings. It's my dear friend, Alice from California, calling to check in and gossjp about RCH, where I used to work. We talked for half an hour, and during that time I put the dogs back in the house and scooped up various piles around the yard. The smoke and heat combination was no bueno.
I go back inside. Jenny is binge-watching still. It is hot, so rather than sit on the couch, I go downstairs. After 15 minutes or so, I hear Jenny calling my name, shouting it, in fact. I call her on my phone from a comfy overstuffed blue chair. I tell her I am downstairs, that its cooler here. She says ok. We hang up. About 25 minutes later, I come back upstairs. She is still binge-watching, so I head to my bedroom, where my window is open blowing smokey cool air into my hot as hell room.
I am not up here more than 5 minutes when I hear Jenny yelling again. Mind you, the fan is on, so I have no idea to whom she is speaking, but assume if she wants to talk to me, she knows where to find me. Honestly, I had guessed she was trying to find Leiney.
Jenny, just a few moments later appears at my door and says, "You can't hear anything, can you?" "Not with the fan running," I replied. She then began accusing me of avoiding her all day. I, who drove her to chemo, who cared for her after her disastrous walk, who made her lunch, asked repeatedly if I could get her anything, who brought her oxycontin, who made her dinner and bussed her dish after she had finished, who sat with her while she binge-watched television. She is apoplectic, angry like back in the day. And she just cranks it up, screaming the whole time. "I have stage iv cancer, if you had stage iv cancer I would never treat you this way. I asked you at dinner to help me make my bed because it's too hard for me to do it. I would never treat you like this." "You never asked me to help you make the bed at dinner," I answered, "you said you needed help making your bed." She was then screaming about my going outside to talk to Alice. Forgetting that I was on my way to take the dogs out when the call came, I told Jenny I talked to Alice outside to be polite. FFS, she was binge-watching, and an earlier call during binge-o-rama Friday from her aunt that I took earned me the Jenny side-eye. Her raging continued. I asked, "Are you seriously saying I didn't care enough for you today?" She went back to the making of her bed. "I had to wash my own sheets today and Abby's clothes that were in the washer." She never asked for assistance, and I was working all afternoon. Honestly. She started screaming that I intentionally walked by the sheets to make her bed which were lying on the stairs. I hadn't seen them, I tell her. When I point out again that she didnt ask me to help make the bed, she actually screamed, "You know how hard it is for me to ask for something directly!"
Then, she turned on her heels, went to her bedroom, whereupon I got up to see if I could help with the bed, only to find it had been made already.
Finally, true to form, the texts began. I haven't and will not look at them, tonight.
CA 19-9 at 33724.9, an increase of around 7815.
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