Looks Like WBR After All

Yesterday was my birthday - I'm now 47 and expect to have many more birthdays!

I am doing okay. I think the time at the coast helped me regain some of my mental and physical strength. I might have slept a lot, but I also took long walks on the beach, too.

I saw the radiation oncologist - the one who does gamma knife in Portland - and he suggested that I do whole brain radiation at this time. It is because of the size (about 3.3 to 3.5 cm by 2.2 cm), the irregular area of it (it is not perfectly round), and because there is a cystic component. The good news is that it is not next to the area that causes nausea or vomiting. He also didn't think I needd to start right away. But I decided to go ahead and start next week.

My digestive system is healing. I don't get the cramps like I used to in my stomach. I still just have diarrhea and the only time I really have any nausea is with Tykerb. So, I am off of Tykerb for a few weeks.

I am only going to do 10 treatments of WBR. I have already had 2. They want to do 13. I'm doing to stop it at 10. I also want to start with a lower dose next week - 200 rads (or whatever the measurement is). The usual at this point is 250. But as I've said before, I think the standard doses are for women (or men) who are bigger than I am. I want to see how well I tolerate the treatment.

In the meantime, through the weekend, I will stay on antibiotics. This is because a new wound opened up under my arm - where an area grew. It also bled a lot when I took the dressing off yesterday. So, I took all three Keflex (only took 1 a day for the last week and a half) yesterday and a Flagyl. I want to try to take all three through this weekend to see if that clears up that infection. I saw the wound care nurse yesterday instead of today. I won't take the antibiotic when I start WBR next week. The area where we're trying to grow skin is 2.5 x 0.5 cm, down from 3.5 x 1.0 cm last week. So, that's healing. The chest wound is also healing.

I guess I'm okay with the decision. It will all (or most of it) will happen while Eddie is bak East with his dad.

All in all I broke even at the casino. Pretty good for several days of playing. My sister, though, won about $300. She stopped when she won. Smart girl.

My parents got me a card and flowers. My son also got me a card and a gift certificate to a local coffee place. We treated ourselves to yummy summer drinks there yesterday, after his appointment. I also got a card from my oldest friend, P., who I need to write an email to. I got a card from my supervisor, too. That was cool. Plus over 100 well wishes from Facebook friends. My cousin and her husband are visiting last night and today. They head on up to our cousin up north later this afternoon.

My biggest problem is that I can't seem to relax my shoulder and arms enough. I'll relax them to go to sleep - and will sleep for a few hours (last night about 5 or so), but then I can't get comfortable again. It seems that laying down is the only way to relax them, so I tend to nap a lot.

I will meet with my grad student later today and see about getting her started on a couple of projects. A friend of mine also moved into my office - it will be interesting to see how she moved things around!

Have a good Friday!

Looks Like Gamma Knife

I got the MRI results back the other day - first from the nurse on Tuesday afternoon and then from my doctor yesterday morning. I also requested that the neurosurgeon look at the MRI, but I haven't heard from him yet. I didn't want to post anything until I had some definitive information to share.

The bottom line is that the MRI found normal post-operative changes at the top of the left side of my head. There were also no new lesions in other areas. However, on the right side of my skull, behind my right ear, the radiologist noted an "enchanted nodularity" that may indicate progression of metastatic disease. This was the area the neurosurgeon first operated on on May 20. The suspicious area is 3.5 x 2.2 cm.

My radiologist oncologist wants me to do whole brain radiation (WBR), which would start the week after we return from the coast. But the last couple of nights, I've not slept and my shoulders and my right arm have been very tight. I have been very teary and anxious.

But today, as I waited at Home Depot with a friend, she called again and asked if I'd heard from the neurosurgeon. She also said she showed my case to her colleague, who does Gamma Knife "surgery". He told her that he could definitely do this treatment for me.

Gamma knife involves only one treatment, but I think I'd have to have my head bolted down, and then radiation would be delivered to a very localized area. It doesn't have nearly the toxic effects as WBR. It might take half a day and it would have to happen in Portland.

WBR would be another 10 or 13 daily sessions. It would have more toxic effects, like nausea and swelling. The good thing is that it would or could prevent the growth of more metastases. And, she'd want to do it sooner rather than later.

My problem with that is that I still have two wounds that are healing. The one in my armpit has an infection so I am on low-dose antibiotics. That is partly due to the lymphedema. The other wound is in my chest. The top part of the wound, which had been closed by a suture, broke open, so instead of 85% of the skin graft taking, now there is only 60% of a skin graft that has taken. Fortunately, it is not infected.

My digestive system is still healing from the steroids and the high-dose antibiotics. But that is gradually healing with Chinese herbs. I no longer have the nausea.

Yesterday, my acupuncturist and today, my physical therapist, did what they could to relieve the tension in my shoulders and right arm. My physical therapist said that my right arm and shoulder actually has nerve tension, so she did some gentle stretches on my neck and arm.

But as I told my radiation oncologist, Dr. Mc., while I was at Home Depot, I just feel like I have been through so much that WBR seems very overwhelming. I said that I still have two wounds that are healing (which she seemed surprised to hear about) and that all I want to do is to rest and recuperate for awhile before doing WBR. In the end, after much discussion, (I told her that I was now afraid of WBR), we decided to try gamma knife for now and reserve WBR for later when I feel stronger and the wounds are healed.

If I did WBR and experienced nausea, they would want me to go back on steroids, which means that they'd mess with my immune system, wouldn't heal wounds, and I would probably still have an infection in my armpit.

With gamma knife, I wouldn't have the nausea, wouldn't have to go on steroids, and maybe those wounds could keep healing. I could go up to Portland and back in one day.

Once I had that discussion with her (and after we went to the Social Security office), the decision to do gamma knife FEELS right. I don't have the tension in my shoulders and arm. My heart and head and body feel lighter, like I'm not carrying the weight of the world on my shoulers (as I felt earlier today during my therapy session). It feels doable to me. I can probably schedule it for the time when Eddie is in Virginia with his dad.

It's made me realize that my anxiety and tension was due to me fighting and pushing back at my doctors - who wanted me to WBR - and not feeling like they were really hearing me when I kept saying I need to rest. My radiation oncologist., Dr. McG., heard me today (she'd heard me before but kept urging me to do WBR) and agreed that gamma knife would be okay for now.

So, now I feel like I can keep healing, deal with the infection, stay on antibiotics, do gamma knife (to take care of the immediate area behind my right ear), and I can enjoy my summer. This gives me the needed time I need to heal and recuperate if (and that is an if) I need to do WBR.

And, WBR is still a treatment option should I need it. But it can wait until I am more recovered from surgeries and wounds. In the meantime, I am back on Tykerb, which gives a protective effect on my brain.

I think I will sleep better tonight. I already have less tension in my arms and shoulders. That is a good thing. It amazes me to realize just how much the prospect of doing WBR was weighing on me.

I meet with the doctor about gamma knife next week, after we get back from the coast. I feel like I can finally really enjoy my time at the coast. We leave on Saturday. We might even be able to go to Omak to visit my godparents in August. I feel like I can enjoy my summer. Finally.

In other news, we picked up the wood for the deck today - we will still need to get things like wood for the railing and stairs and a door to replace the picture window in the front room. And, we found out that Eddie will also get some benefits (based on my record) from social security. I'll start drawing those benefits around Christmas. Those are positive things happening in my world.

Here's to decreased tension in my shoulders. Thank god.