More No News…   March 28th, 2012

From Linda

I offered to write the blog entry as Jake is feeling quite fatigued from his ipi infusion yesterday. We both thought getting a quick note out now would relieve any anxiety out there and take the stress off Jake to get out another blog entry.

On Monday, Jake had a follow-up appointment with Dr. Kim at Mass. Eye and Ear to take another look at the spot on the retina of his right eye. We are happy to report that absolutely no changes per the doctor and therefore she confirms her previous suspicion that it is just a nevi and not related in any way to the melanoma. Yeah! Next appointment in six months.

On Tuesday, we had a very early appointment, 8:30am, with Dr. Sullivan as the  usual prelude to the ipi infusion. We had a bit of difficulty getting Jake’s IV put in at the same time as his bloodwork was drawn but it all worked out in the end after a few extra trips in the elevator to get the right person to do it. Dr. Sullivan thought Jake’s palpable tumor seemed a bit spongy which might or might not be a good sign. We can only wait and see how that goes.

Dr. Sullivan also reviewed the results of the brain MRI from last week. He indicated that the inflammation was reduced since the last scan (just prior to his hospital stay) with most mets appearing to be unchanged (we were not expecting any changes). He was going to check with Jake’s other doctors but at this point, he thinks the Steriod should continue at its current level. Jake appears to be making progress with his eating and recovery which he felt was a positive.

Jake is now scheduled for a neck to knee PET/CT scan on April 18th, followed by a meeting with Dr. Flaherty on April 23rd. This scan is the typical follow up for the 4 dose ipi treatment. Dr. Sullivan indicated that we may see no changes on the scans (or even a bit worse) compared to before treatment as it may be too early for results. If this is the case, we will need to wait another 6 weeks (with no more infusions or specific treatments) for another follow-up scan which puts us into the beginning of June.

As I mentioned at the start, Jake is feeling quite tired but suffering no major side effects from the ipi so we are glad about that. We are giving him lots of time to rest as well as trying to keep his food intake up. Of course, it doesn’t help that we are having typical March weather in Boston this week, so I drove Jake to his appointments rather than walking in the cold, windy air.

So once again, no news is good news. Plans continue for our move to Chester, NH in mid-April.

 

Today marks the one-year anniversary of the diagnosis of my malignant melanoma cancer. I was standing in the kitchen of my mother-law’s house in NH, answering the telephone, surprised the call was actually for me. It was the dermatologist’s office advising me that my mole’s biopsy results were not very good, and that I had a deadly form of cancer. That news in turn led to the contents of this blog, and my current health issues. Stubbornness on my part also contributed, as did unexpectedly difficult to cure aggressive brain mets.

I have been doing quite a bit of Physical Therapy to help rebuild my strength and weight (I am down to 170 pounds – 55 pounds below normal).

Tomorrow I have a brain MRI scheduled at MGH Chelsea, to see if I can cut back on my steroid intake. I then head over with Krystyana to the Boston Museum of Science to test out my new Lytro light-field camera at the live gecko exhibit.

My MRI results will be reviewed with me on Tuesday, after which I spend the morning getting my last of four ipilimumbab infusions – so far, no negative or positive results from the ipi (a.k.a. Yervoy) treatments.

We are still working on move coordination for the weekend of April 13th and hope to contact our growing list of volunteers this weekend
with more details.

We also learned today that my melanoma buddy Bill H. just had his melanona upgraded from Stage IIIA to a Stage IIIC/IV today meaning it had metastasized. Our love and support to you and Jodi, Bill. Melanoma is a real bitch.

 

Still Moving…   March 9th, 2012

It was a beautiful day in Boston yesterday, not only because of the summer temperatures, but also because I was emancipated for the day. I got to spend the day getting Spa treatments to help heal my bruised and battered body. The reflexology I had was divine and I’m looking forward to when I can schedule myself for another similar treatment. Sadly, the air temperatures are now dropping again to wintertime norms, but are due to pick up and get warmer next week.

Our moving plans are still on – namely to finish packing the apartment on Friday, April 13, and then use a large U-Haul freight truck rented by Linda’s cousin Jeff in New Hampshire to cart all of our boxes, possessions and furniture up to Chester, New Hampshire. We have the freight elevator in our apartment building reserved from 1 PM to 5 PM on the 14th. Moving stuff around down in the garage where the freight elevator touches down is not the simplest of things, so we would expect to actually start physically moving things around by about noon time. We don’t believe we need to any extra vehicles to help us transport anything as the large U-Haul truck should be sufficient for all of our goods here in Boston, but we will more than likely need help loading the truck in Boston and unloading in Chester New Hampshire. We will also have a friend visiting from Holland joining us who will not have a vehicle of his own. And it’s likely that I will personally be next to useless in the move because my ability to lift things is severely restricted at this time. If you think you might be able to help us with the packing (dismantling Ikea Swedish torture ware) on Friday night and the actual move on Saturday, please send us an e-mail with your contact information. We will know how many people we have signed up on Saturday for the donut run.

On the personal health front, I had my third infusion of ipi two days ago and based on how slowly ipi works, there is no way to tell if the drug is having an impact in my system yet. This is why I have cautioned all friends and family to be aware that no news is good news. Which is also why, this is the first post in the last several weeks that I’ve made. Furthermore I don’t have the ability to be easily type without lots of spelling mistakes so I use dictation software to assist me with the process which makes responding to people’s e-mail very, very challenging and tedious. For example, it took me nearly 4 weeks to clear out my backlog of five weeks of e-mail, and I hesitate to jinx myself by saying that I am now caught up, after my hospital stay four weeks ago. If there were bad news of any sort then Linda could be counted upon to make a posting on the blog and if I was well enough I would do it myself, And failing that Krystyana could make the post it as well.

At the ipi appointment, Dr. Flaherty indicated that he would be like to have another brain MRI done to see if the swelling has gone down enough to reduce the steroid dosage. The MRI should take place in the next week or two but we don’t have a schedule yet. The doctor also noted my newly white eyebrows. He said that was a good sign that the ipi was working because it is affecting pigmentation which is also melanocytes.

I have been getting physical therapy from a visiting nurse several times per week to help strengthen my muscles which are in sore need of it. That has involved graduating from a walker to a cane within the apartment. Linda and Krystyana take turns leading me through my exercises a couple times per day.

Jake at dinner on Friday, March 9, 2012

Jake at dinner on Friday, March 9, 2012