What a Wonderful World

Just spoke with Dr. Schlenk. We’ve decided to go into surveillance mode for now and get another MRI in 4 months. Summer vacation planning can happen for real now! There are three main reasons for this course of action.

1. I’ve improved tremendously. My strength in my arm has fully returned and pain is rare, low grade and short lived.
2. There was no growth from the first MRI to the last one.
3. The next step is a very aggressive (and somewhat risky) second surgical biopsy. So given 1 and 2 he decided it can wait.

I’m happy with the approach and it’s what I was hoping for.

It was a good conversation and made me even more comfortable with choosing him as my surgeon. Told me “It comes down to 2 things. One, you trust my opinion on when and what to do next and two, I trust you to keep me informed if you have any changes in symptoms.”

If there is no growth in four months we’ll go another four and eventually change to every 6. So more scans now added to my annual schedule. I can live with that!

If I do have to have more surgery they’ll do an angiogram and some other tests first so they understand how well I can handle what they want to do. If it comes down to removing the tumor it’s now certain I’ll lose the use of my right shoulder/upper arm. They probably will have to take the artery too (which is where the angiogram comes in). I didn’t even know the latter was possible at all until this call.

At this point I’m ecstatic I didn’t let the Indianapolis Neurosurgical Group go ahead with their plan. In my opinion it was just plain reckless. A lesson to anyone with a serious medical issue. No matter how impressive and confident your doctor seems, do your own research and get a second opinion. That’s the second time in the last 3 years I’ve had a highly respected doctor recommend a very poor treatment approach.

So, hopefully the next posts on this blog will be about something mundane like Java or cooking! Any changes to the plan I’ll post here but if there are none the next update is in 4 months!

Dr. Schlenk’s nurse called today. The Dr. was out of town last week but has reviewed them since he got back and said there was ‘nothing alarming’. Won’t make it on the tumor board this week, have to wait until next week.

Reassuring that it’s not alarming but that doesn’t mean it’s not serious, just that there isn’t rapid growth. So probably no real news until the end of next week.

Three years ago shortly after I was diagnosed with cancer our dog, Astro, was also diagnosed with cancer. Nothing serious or uncommon for his breed but something to watch. Was odd timing.

A couple of weeks ago I noticed an odd bump on his leg. We took him in and they operated and removed it. Pathology report came back as an MPNST (Malignant Peripheral Nerve Sheath Tumor). MPNST is what I feared most when my current issue started. I knew it was a possibility given the location and symptoms and also knew from my work over the last few years in cancer support that I really didn’t want that to be the diagnosis. It was a huge relief when I was told they didn’t think I had an MPNST. So now, not only does Astro have cancer again at the same time as I do (well, I still haven’t conceded that that’s the correct diagnosis for me yet) but he has the type I probably feared the most.

We’re skipping the $5,000 radiation treatments that may or may not work for him and are going to just diligently watch for a local recurrence and decide on treatment if/when that happens. For now he remains the happy goofy dog he’s always been.

Astro attacking for home made bacon this weekend.

After a series of frustrating phone calls Monday I finally found out that Cleveland Clinic didn’t have my latest MRI yet. Digging more I found out Methodist Hospital (where the MRI was done) had never sent them. Both sides seem to think it was all perfectly normal. Methodist did say that if CC requested them they could send them but it’d take 7-14 days! Called CC and they said they didn’t have any release from me and only I could do that (which Methodist had told me only CC could). So in the end I signed a release and Lynette picked them up in person and I fedexed them to CC. They arrived this morning.

Read the report, not much different. Tumor is ’slightly more prominent than the previous scan’. No clue if that’s bad or not. Doesn’t sound great.

So I’m hoping to get on the tumor board agenda tomorrow and find out next steps.

Talked to the Cleveland Clinic yesterday. They still don’t have my MRI results. Dr. Schlenk’s nurse was going to call the hospital and find out where the results where. So definitely no tumor board this week. Hopefully next now.

The wait continues…..