I have been remiss, as Pam has rightfully pointed out to me, by not updating the blog. So...here goes.
The big news is that I finally got to have my last chemo on Friday. I just made the cutoff number for my ANC (Absolute Neutrafil Count) at 1500...on the nose!
Jean and Frank drove me up and dropped me off at the hospital and I joyously got myself admitted and made my way up to Four East...my old home away from home. Marsha wasn't working, but I did run into Janet from another planet in the hall and she wished me well.
The nurse I had was very nice, slight British accent. Right off the bat she told me that "they" had put orders for me to come back on the weekend and get Neulasta. I immediately bridled at THAT notion and asked who ordered it...I couldn't imagine Dr. McCourt ordered it. They couldn't tell from the paperwork who ordered it and I told them I wanted to talk to Dr. McCourt about it.
So, they checked and found out the doctor was off on Friday. Okay, I wanted to discuss it with Sandy. I didn't want to take the Neulasta. Neulasta is a drug that some ocology centers give to all or almost all their patients immediately after getting chemo---it boosts the body's immune system. My doctor's don't like to use it unless they have to...they prefer to have the body recuperate naturally and that's what I'm used to and what I want to do.
Well, the nurse gives me my pre-meds, including giving me the IV benadryl early (which is how I prefer it...that way I'm not so groggy when it's lunch time) and I was on my way.
I was in the bathroom when SHE walked in...peeked into the toilet and said, "Oh I see you are in the toilet, I'll come back." It was HER...the nurse practitioner who was so weird the last time I was in for chemo. I don't like her and was hoping I could avoid having to see her.
This woman doesn't introduce herself, doesn't explain what her function is, just barges in and takes over. Last time she asked me a bunch of stupid questions and made me repeat all the medication information and allergy information I had just given to the nurse! AND, she pulled the curtain on the nurses as they were trying to hook up my IVs and get the chemo started...very rudely, she just pulled the curtain in their face! That was last time.
This time she marches back in after I was back in bed, demanding to know why I didn't want to get the Neulasta. I told her I never had it before, I was trying to avoid EVER getting it and I didn't want it. She told me that my counts were too low and I was at big risk for getting infection. I explained, or tried to explain, that I know about infection, my counts have been way lower than that and I haven't gotten so much as a sniffle. She told me "you could DIE of infection!"
I told her I had the benadryl in me and was feeling very sleepy and couldn't think straight. Actually, I had told her that when I was on the toilet too. So I told her twice that I wasn't mentally sharp to be having this discussion.
She was very insistent that I "had" to get the Neulasta. I told her I was concerned about side effects. She told me that there were no side effects. I told her that's not true...I know that there are side effects.
I told her I didn't want to have to come back there on the weekend, my sister was coming to visit and I didn't want a trip to the hospital to interfere with that. She insisted that I would die of infection. I said, "can't I go to a hospital closer to me? I live in CT." She said, "no, you come to the Emergency Room here."
Finally, she badgered me so much I said, "yeah, whatever" knowing that I could get rid of her that way, but I could do whatever Sandy and I decided to do. I wish I hadn't had the meds in me...I would have raised a ruckus...she wouldn't have known what to do!
So, she parades back into the room with some more paperwork and tells me: "you have two options, you can come Saturday night or you can come Sunday morning." She leaves and I tell the nurse, "actually, I have three options, I can come Saturday night, I can come Sunday morning or I can not come at all!" To which the nurse says, "that's right!" The nurse agreed with my concerns and told me I had the right to refuse to take the med.
When Sandy came up we tried other alternative arrangements, including getting a prescription for the drug and having Sandy do the injection. None of the local drug stores had it in stock. Backus didn't have it in stock either, except for their patients.
The rest of the day/evening passed uneventfully, except for my occasional reaction to the drug that I'm allergic to...but that reaction is very mild now...I get flushed and very hot...for about a minute. I had that at 6:55; 7:55; 8:55 and again at 9:30. We had never noticed before that it comes exactly an hour apart most of the time.
We got out of there after 10 and it was great to leave that floor for what I hope is the last time! We got home at 11:30 and collapsed in bed.
I got up to go to the bathroom in the middle of the night and when I came back to bed, Sandy woke up and asked if I was all right. I told her yes and then told her that I wasn't going to go to any damned hospital and get Neulasta. So there, Rose or Grace or whatever your name is!
Maria came into Mohegan Sun on the bus from Boston late in the afternoon on Saturday. We went to pick her up and walked over to Frank Pepe's pizza in the Winter area of the casino. Sandy got a single tomato pie with mozzarella and Maria and I split a medium tomato pie w/ mozzarella, sausage, pepperoni and spinach. They loved their pizzas, to me it tasted "off", not how great I remembered it tasting at Frank Pepe's in New Haven when Sue and I had gone.
Later I realized that my taste buds were what was "off"...from the chemo. It had been so long I had forgotten about that side effect. It's miserable, the food is so damned good and the taste is so not there. What a disappointment on the holiday weekend, when Maria is here!
Sunday I got up and made a big breakfast for all of us...bacon, hash browns, eggs and toast...a good meal. Of course it tasted funny to me, but good to the others.
Sunday afternoon Maria and I went to the Flea Market that they have every Sunday at the Slater Mill here in town. We wandered around and checked things out. I met a man who asked me if I was a Survivor. When I said "yes" he gave me a handout about a substance the Ojibway Indians had created that fights cancer. He told me he was a Survivor and he used this substance. I have to read the pamphlet more closely. I think you drink it as a tea. He said that it cured him and said "my oncologist is mad at me" for using it. I wonder who his oncologist is.
Roxie came down after she got out of work and we cooked hot dogs, grilled corn on the cob and had salad and other goodies for supper....eating out on the deck. It was so beautiful out there. Then we went indoors, visited with Roxie for awhile and then she had to head home. Too short of a visit for me.
Monday, the holiday, I got up, made corn pancakes for Maria and me and then crashed. I went up to bed, thinking I would lie down for a little bit until I felt better, well, that turned into almost four hours of lying there! I usually crash on Sunday after chemo...I got an extra day of energy (probably because it was so long since I had gotten chemo) and I had my Sunday crash on Monday.
Sandy drove Maria to Providence to get the bus home later in the afternoon. I laid out in the recliner and read my Kindle book. Went to bed early and had no problem falling asleep and staying asleep!
Tuesday I called Ann Marie, my nurse at the Oncology Ctr and left a message for her to call me. She finally was able to call back later in the afternoon. I needed her to set up the CT scan and "wrap-up" appt with Dr. McCourt as I couldn't get into see her at L&M. Then I told her about the nurse wanting me to take the Neulasta. Her first reaction was a strident "WHY?!!" I told her that she said my counts were low. She said, "have you ever taken it before?" And then she said, "your counts aren't THAT low!" I told her that the woman told me that I could die of infection. Actually I told her the whole story and ended with "I'm glad I don't have to see her again." Ann Marie laughed.
So, I made the right decision. I can still trust my gut. Who knows what would have happened it I had taken the drug? Maybe nothing. But now I can say I did it on my own...my counts go down and I bring them back up...on my timetable, without help. I prefer it that way.
Richard is going to take me to my CT scan appt next Thursday. I'm going for my definitive CT scan on the 37th anniversary of the day my mother died. From cancer. I think she'll be helping me out that day. I have no fears.
I go see Dr. McCourt on the 17th to get the CT scan report and see what she says about the chemo and what we do from here. I'm thinking quarterly rechecks (with CT scan) is what she is going to recommend.
It is sure going to feel great to not have to have more chemo, to be able to get stronger and stronger every day and not have to get knocked down again by the chemo. I'm planning on getting outside more and more, doing little chores, pacing myself, building up to bigger things.
Going kayaking, hiking, riding my bike, walking the dogs, running Bub and Lil in agility, taking agility classes, GOING BACK TO WORK!!! WOW....a whole life ahead of me.
I am so lucky. So lucky to have made it through this whole (well...some parts missing); so lucky I have such a strong support group of family, friends, neighbors, co-workers, and even people who I have never met (Carol, the Delaware family; all the people who pray for me in Marie's church; the Methodist church in Putnam; at Ft Jackson) all of whom have been sending me positive messages, vibes, energy.
Thank you all.....
I am so lucky!
Next on the agenda: LIFE!