Thursday, June 28 – Oh boy….

I’ve put off this post as I really didn’t want to face what’s coming next. It all started Monday; that was my follow up with Dr. Goldberg for the most recent surgery on the boob. It’s all looking good; the bulk of scar tissue that had been building up under the vertical and horizontal incisions was cleaned up and smoothed out. No more dimpling and strange pulling under the right breast. Incision is healing nicely. I have some slight yellowing bruise to the left of the vertical incision above the horizontal incision.  This is where the majority of the cavity inside my boob was. All closed up now. I still have a large lumpy mass of scar tissue inside and when I lay down you can see it pushing against the skin. Right boob is still Saggy Saga, and the left one wasn’t touched so it’s still Perky Flat Bottomed Bess with a dimple. Figured I should name them since I still talk about them so much in my brain, and on paper….

Dr. Goldberg released me to start radiation therapy in 3 to 4 weeks. Once the incision is completely healed I can start. She said I should call to get the mapping started. Then she said goodbye, wouldn’t be seeing her for a while. Like NEVER again if I have my way. Still not sure I want to explore other options. I’m not ready to face that kind of disappointment again. Like my brain says, “you see what happened the first time, why in ever loving hell would you let anyone else cut them?” I’ve got time to stew on this, it’s not like I can have surgery anytime soon. I believe I have to wait at least 6 months after radiation before I can try again if I choose.

I called Dr. Endicott’s office Tuesday morning to get the ball rolling on the mapping. Jen was so nice and we worked on the date – July 10th for the mapping. Then she started looking at the calendar to start radiation treatment. Dr. Endicott is gone the following two weeks after that, so she wasn’t sure if Dr. Endicott would want me to wait until she returns to start or have one of the other Radiation Oncologists oversee my first two weeks of radiation therapy. I asked Jen if I could apply temporary tattoos for radiation. She got very excited and said she could hardly wait for my mapping and treatment. Seems the techs LOVE surprises. I quickly got to work on finding 30+ radiation themed pics to turn into temporary tattoos.

I also cut my hair again. I wanted shorter. I have no idea what I want to do with my hair, and I just don’t want to deal with it right now. So I took the trimmer to the lowest setting and went to buzzing my head. I have other things to deal with that are much more important than hair. And it’s much cooler without all that (~1 inch worth) of hair.

I checked in with Mom, as her reduction surgery was Tuesday. She sounded a bit groggy, but better than she did after her lumpectomy. She was doing great and my wonderful Sis-in-law has been doing a superb job of taking care of her after her surgeries. She also had a neighbor who was going to help clean up her incision site where her drain was leaking a little bit. All good on the Eastern Front.

Tuesday night we picked up my friend from Support Group who needed a ride there, and we all went to our meetings. I was telling her about how Hubby is very worried about my neuropathy, as the more I try to do (walk), the worse it gets. It is a constant buzzing irritation in my toes and the balls of my feet. Putting on socks intensifies that irritating tingly numbness. Put shoes on and it’s taken up another notch. Walk or stand and within 10 minutes or so my feet are so irritated I start swaying back and forth when standing to try and relieve the irritation. In the mean time the irritation swells to a throbbing, buzzing, tingly, numby feeling. I still have sensation in my feet, so it’s not as bad as some people have where they cannot feel their feet on the floor. Then there is walking. Once I hit that throbbing, buzzy, tingly, numby feeling I start limping on both sides. Basically I start walking like an old lady in my subconscious attempt to relieve the irritation. Then I start getting a sharper localized feeling, usually in one or two of my toes, which feels like a rock is starting to dig in. When it gets really bad I get that feeling in the middle of my foot.

So yeah, to Hubby, it looks like it’s getting worse, because the more I try to do the less time I allow my feet to relax between these episodes, and then they come on sooner and last longer. He can see the physical effects of this, the old lady walk. I try to walk normally, but my body takes over and then there I am, walking gingerly, hunched against the pain building in my feet, and then he gets concerned angry with me for pushing myself. Then we argue, then I cry, then he holds me while I pull myself together gain, and we apologize until the next time.

He can’t see that my hands are worse. I can hide that better. He doesn’t seem to notice that I no longer knit or crochet because it hurts my fingers too much. I put off doing things with my hands because they are worse. I get the sharp shooting pains usually in my thumb and the middle of my palm. The other morning I added weights to my floor exercise routine and just holding those for a few minutes to get some arm exercise in I had shooting pains in my hands just trying to get dressed after my shower.

My friend sympathized with me and frustration this is causing me with Hubby because he keeps telling me to stop. We both agreed it’s a good thing I’m seeing the Neurologist on Monday so he can hear it from the expert that this is the way it is until (if ever) it goes away. Hopefully the Neurologist can either up the Gabapentin dose or give me something different that will help mask the symptoms of the neuropathy.

Then the rest of our support group started wandering in, and group started. We talked about the fund raising event that was Sunday. Hubby had printed up a list of what he wanted to bid on in the silent auction, and gave himself a budget. He gave up on a few items, the bid prices were too high for his liking but he was successful with the four top items he wanted. He was strategic in what he bid on; there were reasons for his picks. One was a gift card to Primo Italia Restaurant that our neighbors love. This way we could treat them to dinner without them fighting with us over paying the tab, like they do ALL THE TIME! Then there were two Napa Winery tours with private wine tastings. Both right up my parent’s alley. Pay back for all the times they have treated us in Napa. And then there was the bucket o’craft beer he picked up for the kids. And the galvanized metal bucket would make a nice planter in the future. Our group’s facilitator is one of the founding members of Cancer Support Community. She loved that we got the two Napa tours. She had been the winner last year of one of them and said it was lovely and the wines, which are only available direct from the winery, are superb.

 

 

 

 

 

 

 

 

 

 

 

Then we got to the heart of the matter, what’s going on with each of us, do we have any words of support or wisdom. G was there this week, she has completed day 12 of 20 radiation therapy treatments. Her left breast/chest up to her collarbone is red. Agonizingly raw red, with blisters forming all over. Her radiation techs told her don’t scratch no matter how much it itches. The skin breaks and you have to stop treatment until it heals. She is using the creams religiously and they told her to make sure she puts hydrocortisone cream under the burn cream. She told my friend and I we’re both as fair as she is, make sure we use the creams!!!! She only has 20 days – 4 weeks of radiation therapy. I was all “fuck me!” I have at least 6 weeks. She said it itches horribly. How the F am I going to get through 6 weeks of this? My skin is going to be fried. She was glowing red, it looked raw, it looked painful, and she was thankful she only has 8 more treatments to go. I wouldn’t even be 1/2 way through at 12 treatments.  Here are some samples of what the radiation “burns” can look like:

This is what I have not wanted to face. The irritating burning itch of radiation and then the exhaustion that comes with it. I have been feeling better physically, well except for the neuropathy, but more energy. Ready to be done, ready to find my new self. Ready to be normal. Tuesday night was an all too real reminder that I am not there yet. I have one more hurdle to get through and what I saw scared me more than I thought it would. And I still have that little, itty bitty, tiny seed of fear that this will make me sick as well. I remember how sick I was when I had to ingest that radioactive isotope for the thyroid cancer. That radiation oncologist told me I was highly susceptible to radiation sickness. Dr. Endicott didn’t seem to think it would be a problem, but she wouldn’t rule it out either.

Others have survived this; they have been able to get through. There was one gal who had to stop her radiation treatment to allow time for her radiation burn to heal because it got too bad, so it delayed her final two weeks of treatment, but she eventually finished. I can do this. I can do this. I can do this. I can do this. I’ve been reading up on radiation side effects so I have all the information set in my brain. One of the things they talk about is the redness and blistering is more prone to areas under the breast if it sags over the chest wall. Great… Saggy Saga is just a gem to give me an area of first irritation. Having fair skin is another good indicator that you will have an overall burn instead of just patches of skin that react, like under the sag. Thinking about all this the past two days has made me tired.

I did finally fill out an Advance Health Care Directive. Now I just need to get it witnessed by two people not related to me. I forgot to ask the neighbors if they would do this when we took them out to dinner last night. Primo Italia was delicious, and we had a great time hanging out with them as usual.

Checked in with my mom again today, and she is doing well, and she loves her new boobs. My friend also loves her new boobs too, and she had her drains removed yesterday, and mom’s drains get removed tomorrow. They are healing fast and loving their new looks. I am soooooo happy for them.

Life is keeping my eye on the goal