It seems to have taken forever for October to get here. Okay, I know it is now November but I just haven’t been up to blogging for quite some time and I have been waiting until I have actual news….like results of a Pet Scan. It needs a certain amount of time between treatment and scans or so “they” tell me. My body was already telling me what the results would be….I just needed the confirmation so we could proceed with wherever we were going.
The picture above is waiting for my ride at the entrance to the Highline Cancer Center in Burien, WA. A place I have come to know well in the last nearly two years. All pictures in this post were taken with my Android Smart Phone. Silly me, I see something I like and think I should have brought my camera and then realize…..I have a camera…on my phone! It doesn’t do too bad once I figured out (with the help of a friend) how to get the pictures from my phone to my computer.
But first let me bring you up to date…my summer:
The pain that the cyberknife helped in June came back July 22. I know the date because it was so intense that I was keeping track….pain in my left hip, down my left leg anywhere from 5-10 on the pain scale. I was taking 2 Oxycodone every four hours, sometimes more and often it didn’t help. By early August I was walking with a rollator (I bought one on sale in the spring thinking I would need it “someday”. How little did I know how soon “someday” would come.) and I’m unable to drive because I can’t manage the rollator and the car; putting it in the back seat then getting myself into the car….I can drive but my left leg is the issue as I can’t walk without support. So I am totally dependent on other people for transportation. I have never had to do that in all the years I’ve been driving. I’ve had my own car since I was 19. I see a wonderful Palliative care doctor, Dr. Ellyn Lee. She has been trying different pain meds. What finally works is Morphine. Never dreamed I would be taking hard drugs. I take 60 mg. a day which she says is a very low dose, half in the morning and half at night then I have Oxycodone for breakthrough pain. I have been very frustrated with having to wait till October for a new pet scan. So was Dr. Levenson, my oncologist. Once we got the pain meds straightened out I was at least more comfortable. My question…..would I have to be on pain pills the rest of my life? July, August and September were my worst months since this whole thing began January 30, 2016.
These are a few pictures from outside the Highline Cancer Center. I’m enjoying my rides to the doctor so I get to see the Autumn leaves.
Finally October. I have been trying to use a senior citizen ride service and sometimes it works and sometimes it doesn’t as they don’t have a lot of drivers who go to downtown Seattle (45 minutes to an hour from here depending on traffic). My oncologist is here ….only a mile and a half from me and the Cancer Center too but the Palliative Care, Rehab doctor, his physical therapist and my primary care doctor are all in Seattle….within blocks of each other.
Dr. Levenson, my oncologist ordered the new Pet Scan, Sound Generations (the senior transport people) did have a driver for me and I had my scan.
The pet scan news was not great. I won’t put the entire thing but only the not so good part(there was no totally bad part…my cup is always half full) Here is what it said:
Increase in intensity by the recurrent tumor posterior to the left common iliac vessels and anterior to the sacrum and with new destruction of the anterior cortex of the sacrum, consistent with recurrent endometrial cancer.
My metastasis to my left hip continues.
Dr. Levenson was very sad to give me this news. The cyberknife did work but there is more cancer in that area. He said that the good news is that there isn’t cancer anywhere else. More cyberknife to the area would further deteriorate the bones and I already have osteoporosis. This is what is causing all the pain in my hip and leg and limiting my walking.
On Monday October 23 we began a new chemo drug called Avastin which I receive every three weeks. Luckily one of the potential side effects is not peripheral neuropathy. I do currently have lymphedema( fluid retention) in my left leg which causes quite a bit of pain. I had my first physical therapy a couple of weeks ago and Amy, my therapist gave me some massage techniques to use to get the fluid flowing in the right direction. This happens because my lymph nodes were affected by the cancer. Unfortunately getting to the Rehab and physical therapy appointments was stressing me out. I asked if there was somewhere closer to home and Dr. Lee, who made the referral was flabbergasted when she realized where Normandy Park is….way south of Seattle near SeaTac Airport. She really thought I lived much closer. So as much as I love the doctor and physical therapist she has redone the referral to somewhere in Burien (hopefully at the Highline campus which in less then $10 by taxi…my ride of last resort….a taxi to downtown Seattle would have been $60 one way!) We do not have a doctor here who specializes in Palliative care and I won’t give her up so may end up paying the outrageous cost of a cab when I have to go to her….once a month..maybe we can do it by phone since she knows me now. My friends are really great about helping with rides when I can’t get one through Sound Generations but they have lives of their own so aren’t always available. Plus…I sort of live in the boonies….unless you are going to the airport.
Not only do I have a lot of different doctors they are with different systems and don’t understand that having two appointments in one day just doesn’t work for me. In fact I’m so exhausted two appointments in one week doesn’t work.
On top of everything else my red blood cell count is down and since August I’ve had three blood transfusions. No wonder I’m tired all the time. At least when my oncologist checked my blood this week my increased iron intake(thanks to some really tasty top sirloin hamburger patties and leafy green salads) helped and I’m not sitting in their chair having a transfusion this morning.
There were times during July, August and September, that my pain in my leg would not allow me to sit with my laptop even with a pillow underneath and I couldn’t sit up at a table or desk because of the lymphedema. I had to keep my legs elevated. I think those three months were the worst I’ve had since this started with the DVT .
Although hair loss is a possible side effect of the drug Dr. L says it is unlikely. And if it does fall out hopefully it will grow in curly again like it did this time.
Pictures below are outside my window of my home towards the parking lot….the constant changes in light and leaf color put on quite a show which doesn’t show up as well for the camera as it does for my eyes.
About two or three years ago my friend Max gave me this plant which was blooming at the time. It hasn’t bloomed again until this summer….keeping me company and bringing a little Hawaii into my home.
Diavolo is fine. He’s a great nurse spending most nights sleeping snuggled up to me. He also likes to sit and ride on the rollator. I bought a “roomba” robotic vacuum cleaner and haven’t run it yet to see if he wants to ride on that too. Who knows maybe he will be a You Tube star yet.
My hair pretty much still looks like this and I get tons of compliments on the dark red color. Including from some very attractive men on the street (thank you member of Normandy Park’s finest on a lovely sunny afternoon). I am maintaining my positive attitude and wicked sense of humor.
I’ll try to keep in touch better but as we all should know….cancer has a mind of it’s own….but then….SO DO I!