I'll be blunt with you from the beginning of this post, I am battling extreme anxiety. I have had two very low points in my life in which these anxiety attacks surfaced, and it is very hard to deal with. I had to breathe into a bag this afternoon to stop myself from hyperventilating, so I am in hopes of getting this under control. I have been able to ward them off when I keep myself busy, such as at school. I guess middleschoolers can be so caught up in life that the drama is actually a healthy dose of normalcy for me!
But after school is difficult, and the quiet times in the evenings with Brian also lend itself to anxiety. It becomes a time to talk, the talks that no one wants to have but everyone should have. I'm not sleeping. I have resigned myself to staying up until I drop, then when I go to bed, I'm usually too tired to do anything but crash. I am working to change that. I did take a 30 minute walk today that felt good in the sunshine, but within about 2 blocks of home, I started having another panic attack. I can't explain this to you really, but if you could even let your mind go there...it would be like knowing the love of your life or maybe even your child or your parent was going to be killed in a car wreck, that there would be terrible suffering beforehand, but that you were just forewarned. I am working to just live each day and to enjoy Brian and our family, but that takes time and constant effort, and it is just really tough right now. Thanks to great friends and family who have stepped up and helped hold me up through some difficult days. I feel so guilty having Brian comfort me when it is his life that is threatened...but seriously, in a different respect, all of our lives are threatened. My life as I know it may never be the same, the future I had planned with Brian is being wiped away, Tye's future...
I better just stop or I'll start another bought of anxiety.
So to the plan...it has more holes that Swiss cheese, but is clearing up. He could have a consult with Dr. Litofsky (neurosurgical oncologist) tomorrow, Sept. 27, then preop, then surgery on Friday. Brian has not made the decision to have another craniotomy, due to the possible lasting damages and side effects, and is really wanting to do stereotactic radiosurgery instead. I don't know if we will get our wish on that. They intentionally left small residual disease when he had his craniotomy in June because the melanoma was attached to a few blood vessels, and removal would likely have caused permanent damage. This is in the area of his facial functions, including speech, but there is no way to know either way how this may or may not be affected. So now we are to today, and would I guess have to be convinced that taking that melanoma now would indeed be the best choice. As I said before, we don't want to speed up any symptoms or cause issues that Brian isn't yet dealing with.
So we decided to go forward with a consult with Dr. Litofsky, now scheduled for Monday, Oct. 1st. They also have us scheduled to see Dr. Westgate (radiation oncologist) that afternoon, and we are hopeful that might mean the radiation option is still on the table.
As far as the anti-ctla, we are going to Chicago. We are already going to Chicago from Oct. 6-8, purely coincidentally...or maybe not. My cousin's wife is running in the Chicago Marathon for Team Melanoma, and Brian wants to be there at the finish line to cheer her on. We just decided to stop putting things off until Brian felt better. So now, with this all happening, Dr. Anderson is working to get Brian in with a melanoma specialist at the University of Illinois in Chicago to get the anti-ctla treatment. This might only be for the first treatment, as Dr. Anderson is continuing the process to get this treatment all lined out at Ellis. Then Brian's treatment could be transferred back to Ellis hopefully. We are hoping this might mean that we adjust our plane tickets and go early or stay later. I am entirely too much of a planner, which adds to my anxiety, so I am working hard to just sit back and let this work itself out. Everything else keeps falling into place, and only the disease has caused us the problem!
We might know an answer tomorrow. Dr. Anderson is doing a good job of taking care of me too, as he is letting me cyber stalk him...ha! Maybe that is why I am able to trust him to give
Brian the best possible care.
Until tomorrow...
Jenni
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1 comment:
Jenni,
I lost my husband to melanoma two years ago. He was 59, but our children were between 3 and 17. (5 of them) I felt like I was living in three dimensions at the same time. Life with Tim, life losing Tim, and life without Tim. Because of the children, I didn't feel like I had the "luxury" of only living in the now - while we still had him. I was the one who would be left behind, and I had to go to these other places. They all were my reality. Sometimes it would overwhelm me - like what you describe.
I hope so much that something works for your husband. Your family is so beautiful.
Valerie
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