Thursday, July 14, 2011

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.


Kryn said...

Hi Dee- I live in SW PDX just off the 5 (Capital Hwy/Barbur Blvd). If you ever need a resting place on the way to or way home, feel free to call me! The couch or a quiet kid's room would be yours with no expectation for visiting or anything! Take care and thanks for sharing your journey. Kryn

Joanna said...

Hi Dee,

Have a great trip to the coast, enjoy, heal, rest and rejuvenate. You have a good plan in place and your wounds can knit together. I do know that Tykerb interferes with healing (I was on it when I had a chest abscess) so it is good that your WBR will not further interfere with your healing process.


liz said...

Hi Dee,
I am very happy that you finally had a good day. My name is Liz and I have been following your blog for several months now. I do not want to tell you to stay positive since I did read your post on that topic, but I do want to say that you have helped many by sharing your story.
That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey.

Either way, thank you so much for your writing. Take care and best regards.
If anyone would like info about I Had Cancer please email me.

flynnster said...

Hi Deanna,

It is amazing to me how much effect anxiety can have on the body, and even more amazing that the medical community doesn't seem to recognize that an important part of care should be in the relief of that anxiety. I wish you had more help in that realm. But by standing up for your own care, I think you're making a big difference for other patients (and hopefully yourself!)

Enjoy the beach, and try to get some rest!


j said...

Hey-a Dee. Boy. Why are these things always called "Gamma Knife"? Why can't they involve flower petals or kittens or something? Seriously, just sitting here in a Nevada Motel 6 trying to take in all of your news. Thinking of you. Rooting for you. Thinking of you some more.