After 14+ hours, we are headed home. Loretta did really well. She has her new parts (port) and a load of chemicals that will last her two weeks. Everyone at SCCA was great, but I still don’t recommend going there unless you have to.
Loretta is going to feel sore and maybe a little tired tomorrow but that should get better as she heals from the port surgery.
That’s one down. 15 chemo to go.
We have gotten into the “Infusion Center” which is a rabbit warren of little rooms filled with people who are paying lots of money to be poisoned in very particular ways that were dreamed up by people who went to school for far too long. A big Thank You to all of them.
We have been in the room for 90 minutes and all Loretta has gotten is stuff to protect her from the effects of the stuff they are about to give her. Most of it is anti-nausea medications that try to counteract the effect of having your entire gut attacked by the chemotherapy drugs. All of this is accompanied by gallons of salt water which makes the bathroom a very popular place. Imagine a line of people, some with hair, all pushing a groaning, beeping, clanking IV tree with multiple bags, syringes and electrical devices.
Actually, it isn’t like that at all except for the bathroom being very popular, the IV trees with the groaning, beeping and clanking electronics hanging with multiple bags and syringes of clear and brightly colored fluids and some of the people do, indeed, have hair. It isn’t an unpleasant place and there are plenty of bathrooms. AND, there is a room called the “Nutrition Center” that has a lot of fun snacks and drinks for the patients. You gotta love a place with a free kitchen. I’m thinking about swiping and cheese stick or two.
Anyway, now it’s time for the real chemo. Bright red so you know to stay away from it. The people who have to handle it always wear gloves and cover themselves with plastic. Once they have double- and triple-checked that the right poison is in place for the right person, they pump it straight into Loretta’s heart. It’s all very exciting.
We scored a couple of lounge chairs on the third floor. They give you a pager so you know when your table is ready.
Doing the MUGA. First, they take out some blood and make it radioactive. Then they put it back in and take pictures. They take three angles with an exposure time of about 5 minutes each. I’m sure there is a lot of post processing on the images because what is on the screen it’s pretty ugly:
That lump is Loretta’s heart.
Loretta is resting (maybe not very comfortably) in the prep room for the Nuclear Imaging area. They are running a little behind (which is surprising – they are normally right on time if not early). Updates as they occur.
As I write this, I realize how hard it would be for a 24 hour news channel to fill the time. I knew it was hard from my past life in the TV biz (it was called the “voracious beast” in the days when you just had to fill 30 to 60 minutes per day) but I was never the guy in charge of planning what the content would be. No wonder the media is full of useless (or worse) content. This blog reminds me of that.
Today is Loretta’s first day of chemotherapy. Of course, it isn’t that easy. First, she has to have a port installed so they can start pouring various chemicals into her. The port procedure is fairly short – maybe 45 minutes. The prep for it has been 2+ hours. The port is essentially an I/O (input/output device) that links the outside world with a spot in her vein right above the first input valve of her heart. They like it there because it is “very turbulent” and there is a lot of blood going by very quickly so the really nasty chemicals to come are dispersed very quickly.
Once it is in, they will let me back in to see her for a few minutes. Then it is off to make her radioactive (again) to get a baseline for her heart function. I’ll post another exciting update after I’ve seen her.
[Update] She’s out and all went well.
This is what the port looks like:
The wedge-shaped thing is where external needles go and is implanted against her pectoral muscle on the left side. The tube goes up and over her collarbone then down the jugular vein to her heart.
WOW! On Friday, March 15, my friends held a Friends of Loretta get together. I knew that this event was going to happen, I just didn’t know what it entailed. Boy was I surprised! Scott, Fiona and I arrived at the gym a bit after 7:30. David and Jan were there. (Rachel was sick and couldn’t be there. I am hoping one of them writes about buying the flower from the two of them). Waiting for me were friends, family, co-workers and clients. (Actually, I should say all my friends who happen to also be clients, co-workers and family.)
This event was put together by my dear friend Roberta. It was a “good wishes for the next phase of my recovery” party. After an introduction from another friend, Alexa, and a few words from me, the well wishes began. Every person or couple brought a flower and were given a bracelet. As I met each person, they gave me the flower and the bracelet and hugs and well wishes and hope and love.
Scott took some photos of the event that you can see here.
The flowers were made into three gorgeous arrangements. The bracelets went on my wrists. There were 53 bracelets symbolizing 20 weeks of chemo and 33 days of radiation. I had originally thought that I would get 33 bracelets at the start of radiation and remove one after each treatment. That idea was taken one step further to include the weeks of chemo. Since wearing all 53 bracelets won’t be feasible (I still have tests to be done that all metal needs to be removed from my body) I have decided to wear them in groups. Small goals on the way to the ultimate goal.
The first group will be 8 bracelets for the 8 weeks (4 cycles every other week) of AC. The second group will be 12 bracelets for the 12 weeks (once a week) of T. I will then take a little bracelet break for surgery. The third group will be 33 bracelets for the 33 radiation treatments over 6.5 weeks. AND THEN I WILL HAVE MET THE BIG, FINAL GOAL!!!!!
I received a basket with slips of colorful paper written with words of encouragement, jokes, more well wishes, etc. I have read them all and will keep them close for the times I may need a little pick me up. I also received a montage picture of friends and family who weren’t able to attend. For those of you who couldn’t make it or are just now hearing about this event, I still feel your love and support.
It is hard to put into words how much this evening met to me. Knowing that my friends wanted to do this for me and seeing all the people gathered for me was very humbling. All the kind words of love and encouragement will stay with me forever. Each hug made me feel mentally and emotionally stronger.
Today I received a card from a good friend of my mom’s (my mom died in 2005 from pancreatic cancer.) She wanted me to know that she and my mom’s other friends are sending prayers from Virginia. She also told me that my mom called me courageous. I don’t know about that. But I do know that it is easier to be courageous when you are surrounded by people who so freely give you flowers and bracelets and well wishes and hope and love.
Drain, drain go away. Don’t come back no how, now way. I did get the drain removed last Saturday! I didn’t have to take it to Canada with us. No extra passport needed! However, even though the drain itself is gone, draining continues to occur, I am sort of like a water balloon with a teeny, tiny hole in it. I feel like I have sprung a leak. I use a lot of gauze stuffed into my bra in my armpit. Do to my sensitivity to adhesives, I had to stop taping the gauze down. Too much skin was coming off with the tape. Of course, this may all be TMI!
Anyway, bottom line is the drain is gone and soon I will stop leaking (at least from my armpit.) Another milestone met. Now I can start physical therapy on my right arm. (I am still doing PT for the pinched nerve on the left side. That is MUCH better BTW.) The axillary lymph node dissection can result in arm lymphedema. This type of lymphedema is caused by the removal of some or all of the lymph nodes in the arm pit and the arm swells. Physical therapy has shown to help this from occurring.
My cohorts! So mature!
So go get something to eat!