Easter

I guess it’s time for another update. Tracy went home yesterday and will be back for second chemo the beginning of May. She has worked like a trooper, cooking, caring, listening to my complaints. I repeat..this is much harder on family than patient. I took her to the airport, so no problems driving. I’m not looking forward to next chemo because everyone says this is the one where you lose your hair and have a metallic taste in your mouth.

I’ve done pretty well, comparatively. No nausea. Eating. Tasting. Drinking water. All the tags placed over my staples have fallen off and some of the coating they seem to have put on the two port incisions is also peeling off. 

On day three and four I was tired, but not go to bed tired. I made one mistake: I went to the gym one day when I knew I was too tired to go. I did half the regular time on treadmill and recumbent bike, but then left. It left me weak and messed up the next day. I know better now, but even when I don’t feel up to the gym, I try to walk every day. Not fun wearing a mask at the gym, but I have to protect myself. I don’t wear one walking. And no going out to dinner. Boo hoo on that one! I REALLY miss that. 

I’d say there is steady improvement each day. A little backache one day, or feet ache one night, but Advil takes care of that. I think you slowly improve and when you’re finally feeling fairly normal, it’s time to get hit again.

Tomorrow I’ll try some ordinary things: car wash, grocery store and see how I do. Mask in grocery...much hand washing going on here. My life has changed drastically. Takes a while for it to sink in, but it finally has. I am grateful that I’ve taken this as well as I have, no depression, no tears, just acceptance. Pray that continues.

Am I boring you?

1 month

 The first chemo went well. No pain at all accessing the port. They did a blood test, then said all was well. They started with three drip bags via the port: medicine to coat the stomach, an antibiotic and some benadryl. Then they started with taxol, followed by carboplatinum. It all took about 5 1/2 hours. I feel great, but guess I will have a couple days (hopefully) that I will feel fine, then get hit with exhaustion and, hopefully, considering those expensive pills, nausea. About those pills:

They’re called Emend  and my drug program would not cover the cost. You need three for each chemo, they cost almost $700 for the three. You can reapply and apply to a program with Merck that will give them for free for a year. I was accepted. They were supposed to arrive by Saturday, but didn’t, so I had to find a drugstore that had it in stock and pay them $635! Fortunately, the pharmacist was on the ball, went to a website dedicated to finding coupons for drugs your company turned down. He found me a $410 coupon, so didn’t have to pay the full shot. We should receive the pills from Merck this week.

I was given steroids to take orally the night before, in the morning, and twice a day for next three days. She also stuck a neulasta patch (well, not a patch, more like a small machine that flashes a green light) on my right arm. For 27 hours, then we take it off. It’s for your white blood cells. I was stupid enough to forget I sleep on that side. Duhhhh.

Did I mention I have to take my temperature twice a day? And go back one week before next chemo for blood test. I think this is also the month I have to see the gyn for post surgery exam. Good planning again. double duhhh.

So water. You have to drink gallons of it to wash all the bad stuff out. Also, my bathroom is considered toxic, nobody can enter except me...toilet lid down to flush, and flush twice.

Here I am: 

How do you like my short hair? And Tracy says this photo is an Apple product ad. 

Next chemo in three weeks. They said if I felt OK I could go out to dinner....eat nothing raw. But were vague about the gym, which, at the time of day I go, nobody is there and I could wear a mask, wipe everything down etc ; who knows who’s touching the food in the kitchen? I can’t wash that! So many incongruities! Both the doctors said to do what I want.

So far, so good. 

Almost three weeks

To start with, I want to thank all my friends for their thoughts, cards and prayers. You can't know how much I appreciate it and how much it lifts me up.

This week we accomplished a lot. I’m still healing, but we’re moving ahead on the list. We looked into wigs and found a perfect one, exactly my color and style. I only need to have my hairdresser trim the bangs correctly. I also decided to have my hair cut really short (Michele Williams style) as several of my friends said it was terrifying to wake up and see chunks of your hair on the pillow. Will send pic when I do that. There’s yet another wig shop in town that carries caps, which I’ve been told I’ll need at night.
Then we leased a new car....wouldn’t you just know that my old lease would run out right now? It was Tracy’s first experience with a car dealer, and you ought to ask for her services because she was a first class negotiator. Also, my apartment lease came up for renewal, so we got that done as well.

And now to the port. It was put in Monday. It’s outpatient and it’s a device that gets implanted just below the skin, and connects to a blood vessel near the heart re two incisions. They sedated me with fentanyl...which does not agree with me, so they added two doses of anti-nausea. Altogether, not a fun day as I stopped breathing a couple times and they shook me and yelled BREATHE! (Did I mention that I also had no pulse at one point during the first surgery? Same drug. And yes, we keep telling them NOT to use it.) The procedure doesn’t take long and I was home in a couple hours. There was a little ache when I turned my head a certain way, but other than that, I was mainly exhausted. Slept off and on rest of the day. Now it just feels a little stiff, no pain. You can feel a little bump under my skin.
I really have to add this little update. Remember that bladder incontinence was my first warning sign? Well, I am sorry to tell you that it really doesn't seem to improve much. I wear a pad pretty much any time I leave the house. You wanted honesty...you got it!

Tracy went home to NYC to accomplish a little work. So fortunate for both of us that she no longer has a physical gallery and does most of her work from her home or on trips with clients. She has been a brick and will be coming back for the first chemo. The cat stayed with me. I'm OK with that.

So now I have two weeks of no needles!! Just rest and heal for the oncoming battle. Except....I had one meeting with the chemo nurse today to learn the protocols. They are amazingly strict and comprise about 30 pages of instructions. My drug plan turned down one of the three drugs for nausea, so we are reapplying. I’m keeping my fingers crossed because that one would be $800 or so out of pocket.
I’m writing this diary to describe feelings...here’s one: I don’t want to hear or even think about this for the next two weeks. Would rather pretend all is well. I didn't even want to go to this grim meeting. But I put on my big girl panties and went.

Just to celebrate, I went to the gym. First time since the first surgery and managed a mile and a half on the bike and nearly a mile on the treadmill. Not great and not up to my usual standard, but for the first day back in over a month, I’ll take it. Am not allowed to use upper body for two weeks because of port surgery.
Next update will probably be after first chemo on the 15th.