What a Wonderful World

I’ve had several folks tell me recently they check here occasionally for updates. Didn’t think anyone did so I’ve been negligent. Just finished my first (or is it second?) six month scan. Was at 4 months. I’m waiting on the results now. It’s a pain to get the images from Indianapolis to Cleveland. They should be there now and I’m hoping the tumor board reviewed them yesterday. If not almost certainly next week. It’s nerve racking to wait but the high priority cases get scheduled first so I usually don’t make the agenda the first week they have my scans. Hopefully I’ll never be high priority.

Symptoms remain about the same. Sometimes I get a good bit of pain and numbness. Discovered recently that getting a massage brings almost complete relief so I’m now angling to get a prescription for a weekly massage!

I’ll post here when I get the news. Shrinkage or gone would be a miracle. Same size would be awesome.

Pray.

Thanks for caring enough to check in.

Yesterday, Tracy had his regular 6 month scans for his Sarcoma cancer (not related to the neck issue, at least we think) and while there, he asked his oncologist to review the MRI from his neck. The oncologist basically said the mass has not changed/grown, and, “Cancers change and grow.” So we taking that to be a positive sign. Also, he got the all clear for his Sarcoma check up which means there are no signs of mets in his body.

Praise the Lord!

On a down note, our dog Astro ended up having his spleen removed on Tuesday, along with a tumor the size of a softball. The tumor had ruptured and he was bleeding pretty heavily internally. He came home Tuesday night but all day Wednesday he was more lethargic than ever, so I called the vet late Wednesday night. We ended up taking him back to the vet at 7:30 this morning. His heart is not beating properly and he is on some pretty serious meds to try to stabilize the rhythm.

We are not sure how this situation is going to end, but we hope and pray for our dog’s sake (and our family’s!) that if the end is near, it will be quick, painless and quiet.

Pray for our family to hold it together as we rush about the daily parts of our lives (work, school, soccer, piano, football, etc.) and still try to care for our ailing puppy dog. It’s hard on the family, but we rejoice in the fact that we are not trying to care for an ailing Tracy!

Tracy will most likely continue the 4-month cycle of MRI’s on his neck until such time as the mass disappears or needs to be dealt with. We are praying that next time, the mass will be miraculously gone!

We will keep you informed and we greatly appreciate your prayers and praises!

Today, Tracy had another MRI to see if the mass in his neck has grown or changed any in the last four months. He has to get the radiologist’s report later this week then send it, along with a copy of his scans, to Cleveland Clinic. Then we go back into the waiting game for the tumor review board to meet and see where to go from there.

We don’t anticipate hearing anything in that regard for at least a couple weeks, as the tumor board meets every Thursday. Since we won’t make it for this week’s tumor board, then most likely (hopefully) we’ll make it for next week’s. We may hear something from the doctor by the end of next week or beginning of the following week, which will take us into the week of September 24th.

And in true fashion, Astro got sick over the weekend and has spent the day hospitalized at the Vet. Just got the call and once again, we are looking at potential cancer for Astro. I keep asking Tracy why he & Astro have to go through this stuff always at the same time. It’s just a bit more than my nervous system can handle.

So, the holding pattern continues (on both patients) and we will keep you updated as soon as we know anything new.

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…..

Crazy week. Kind of checked out from updating folks. Anyway, had the MRI done Wednesday. Now the waiting begins again. Dr. Shlenck should get the results today or Monday. Most likely they won’t make any decisions until the tumor board meets on Thursday. So my guess is no news for at least a week.

The prescription they sent was wrong. I requested a new one and gave them the fax number off my business card. Now, as you might guess, I have little use for faxes in this day and age and never noticed that the number on my card was very old and no longer a fax machine here at the office. Called yesterday afternoon and gave them the right number.

So to answer the next most common question. No, I don’t have the prescription/order yet.

Soon. I hope. I’ll continue to pester them.