Settled in Hospice   May 24th, 2012

from Linda

We moved Jake as planned this morning at 11am. The hospice coordinator worked some magic and our insurance coverage was cleared in just a couple hours.

Jake is at:

Community Hospice House

210 Naticook Rd

Merrimack, NH 03054

room 109, Please do not call Jake on the phone as this is stressful for him to answer it. Family or those visiting can call the main number and speak with the staff 603-595-5688.

Many people have asked what they could bring or send us. Jake still loves his food but just much less of it in terms of volume. Another thing Jake had hopes do was starting something he called 10 Days Left. It is not about dying but about what would you share with the world ,your family, etc if you knew that was all the time in the world you had left. I hope I have phrased it right. He wanted to know  the important lesson of life, things that have made a huge impact but might have seemed unimportant at the time. We’ve had a lot of these discussions lately and maybe when I’m less weepy I can share some with you all. Needless to say , we’ve had little regrets about all our traveling and eating adventures :-)

Hugs to all that need them, Linda

 

Another Day and Another   May 24th, 2012

from Linda

Jake is adjusting to the hospice well. I got to overnight with Jake Saturday night which gave us private time together . We’ve had lots of visitors and Jake keeps us hopping for various foods like Mexican, Brazilian and Sushi. Jake is doing better than I am in remembering the details of everyone’s lives. :-) And we have had several friends visit that go back almost 30 years, pretty impressive.

On Sunday, they started Jake on a new medicine to help him with word confusion/frustration – trying to find the right word. Although drowsiness is not a side effect, it seems to help patients relax so the first couple days they are sleepy and are able to catch up on some much needed sleep.

We are taking a leisurely morning (Jake is napping) as we are expecting an energetic visit from our niece and nephew today.

 

from Linda

I delayed posting this blog entry as we tried to reach family members with the news.

As I mentioned in my previous post, Jake suffered three serious seizures in the course of an hour on Monday. The EMTs were able to administer medication to ease the third seizure as they already had him in the ambulance when it started. We are thankful for that.

But these seizures are a sign of the future and that future will be short. We met with a Palliative Care professional from the Elliott Hospital yesterday afternoon. We talked about what the situation is and our expectations. Jake asked the tough question – how long? The answer – days to weeks, not months.

We voiced our desire to have Jake with us at home as long as possible. The kind Lisa gently explained about the seizures getting worse and more frequent as time moved on. Although we could have VNA and Hospice care in our home, it would not be 24/7. When Jake suffers his next seizure, it would take precious time to get the medicine necessary to ease the seizures effects. If we place Jake in a live-in Hospice situation, the medical staff there would be able to address his needs immediately. As one of four family members who witnessed those seizures, I cannot convey how terrifying they were. And add to that Jake was conscious of what was happening to him and his terror was evident. The decision has been made to find a bed for Jake in one of the three NH hospice units. Our house in Chester seems to be smack dab in between them all. We are hoping for the one in Concord, NH as my family lives nearby and that would help during this time.

Now for a little good news, Jake is not in pain and has not required any pain medication. So while he is tired and weak, his humor still shines through. Yesterday, Jake had a Five Guys burger and fries for lunch which impressed the staff. Last night when it came time to order from the hospital menu, Jake said “If this is one of my last meals, I’m not going to eat hospital food!” On request, we got him Haddock Fish and Chip, fried scallops and shrimp with lots of tarter sauce from The Weathervane. Following this thought, I got a Lazyman’s Lobster to make sure Jake’s last lobster wasn’t that icky fried stuff we had on Sunday. For dessert, another trip out for soft-serve chocolate and vanilla twist ice cream. This morning we are slow cooking baby-back ribs for his lunch.

Jake has also started a travel list with the kids of all the places he wants us to visit for him. Of course, the polar bears top the list, although more than a couple dozen places and sites have been discussed.

At this point, Jake is okay to have visitors as long as the visits are relatively short. While he is at Elliott, the visiting hours are 12noon-8pm – more info at www.elliothospital.org We don’t have a time frame for the move to the hospice. Please let me know if you plan to visit so I can keep you updated should anything change.

11am update
We just heard that Jake definitely qualifies for in-house hospice care but currently there are no beds available in Concord, NH. We are looking further afield in Merrimack and Dover.

 

Jake at the Elliott Hospital   May 21st, 2012

Today was a tough day. After a nice lunch with Jake’s brother, Dave, Jake started experiencing strong seizures. We called 911 for an EMT/ambulance. Thank you Derry Fire Department for being so kind, fast, and professional. And thanks to Dave for driving the kids and I to the hospital. Thanks to  my mom for driving Dave back to his car and taking the kids home, plus coming back to the ER to wait with Jake and I until his room was ready.

We spent most of the rest of the day in the ER waiting on test results. We are thankful – no more seizures at this point. They have started Jake on a new medication aimed at preventing more. Jake and I will be meeting up with various doctors tomorrow as the CT scan did not reveal anything new that may have caused these seizures.

Jake was groggy due to the medications, but demanded a meal in the ER so that is a positive sign. He also ran through his list of the things I should bring him like his special warm duvet comforter and such. At this point, I don’t know how long Jake will be in the hospital.

I apologize in advance to family as this may be the first time you hear about this especially if David has not been able to contact you yet. I just need to write this entry now before tomorrow when I will likely be spending most of my day in the hospital speaking with the doctors.

Linda

 

 

From Linda…

On Monday, I sent this email message out to family but I never got a chance to blog and let the rest of our friends know what was happening. See below.

“I just wanted to let you all know that Jake is currently having eating problems again which has quickly led to unsteadiness and weakness due to his already weakened state. I have been in contact with his doctors and they have doubled his steroid dose as of today in the hopes of jump starting his eating once again. The second dose begins tonight so it is a matter of wait and see for the next few days. Hopefully, we can keep him out of the hospital this time.

Because of this, we have cancelled our trip to the mid-West which was scheduled to begin tomorrow. Right now I’m trying to cancel all the reservations and contact all the people that might be expecting to see us.”

Tuesday Update
Well, with just the first of the extra medicine last night, Jake is already eating better and more steady on his feet today. We don’t know how long Jake might be on the extra medication but we are in constant contact with his doctor who is monitoring his progress.

 

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Quick Update   May 9th, 2012

From Linda…

As you may know from the last blog entry, Jake’s daily intake of steriods was
reduced at his last doctor’s appointment. We had been warned that it might cause
some weakness and we should keep in touch with the doctor with any symptoms that
might develop. Jake has recently been feeling weaker and uncoordinated so we
contacted Dr. Flaherty today to see about raising Jake’s steriod level back up to
relieve the symptoms and get Jake moving better. The doctor readily agreed that
raising the steriods back up would be a good idea. It will likely take a couple days
to see some improvements.

Jake had tried acupuncture before and found some relief from cancer treatment side
effects but we had problems locating another practitioner in Boston when his moved
away. Now that we are in Chester, Linda found an acupuncturist in nearby Hampstead.
Jake has had a couple treatments so far and is looking forward to more at the
Merrimack Valley Acupuncture. Jake has also had some reflexology massages at spa as
well as nightly leg massages from Linda to get some relief from lymphademia in his
right leg (a side effect from lymphadectomy surgery a year ago).

Our Softub spa is finally up and running with the last part, the bench surround,
arriving today. We still have not convinced Bas to give it a try, although the rest
of us have had a dip or two.

As promised, Jake has increased his daily PT in preparation for traveling. Krystyana
and Linda take turns running him through his exercises 2-3 times per day. Our travel
plans take us to Minneapolis, Indianapolis (and Columbus), and ending in Cincinnati
during the second half of May.

 

From Krystyana…

Our move to Chester went quite smoothly and we send many thanks to those who helped.

Although we were filled with relief that the move was over and we had most furniture in its proper place, it was not to last because we soon found out that water was leaking in the basement from the septic system…at 10pm on a Saturday. We had to skip showers that night and there was much anguish over that, mostly from me. I was the lucky gal attempting to take the first shower when our houseguests hollered up about a lovely water feature they had found in the basement. Needless to say, the first order of business the next day was to find a plumber working on a Sunday. The plumber fixed the problem temporarily but told us we had to replace the septic outflow pipes and we were not allowed to flush any toilet paper or wipes until that was resolved. We had to wait a week and get quotes from plumbers to fix the various plumbing issues. It was decided by my mom that my dad would probably prefer being away from the house during the septic replacement as it would take a few days and possibly be loud and smelly. And so we stayed at a hotel for two nights with my dad in a room with a Jacuzzi tub and gas fireplace in it. Dad turtled in the tub and we had to call in Bas to help get him out of it. Thankfully, the whirlpool in the pool room worked out better and Dad could get in and out under his own power. Another issue that sprung up midweek was that our oven was not working properly, while in the attempt of cooking meat within it. And we are still working on getting a motor for the soft tub my parents ordered because the delivery people showed up with the correct sized tub but incorrect size motor.

Despite all that, my mom and I have unpacked and organized quite an impressive amount while installing various fixtures.

My dad had his PET/CT scans on April 18th in Chelsea and his doctor’s appointment was April 23rd in Boston. His doctor said tumor growth was on going but seeing my dad, he felt very positive about my dad’s progress. The doctor also had the amount of daily steroids reduced. My dad is doing a lot better in terms of his energy, speech, and reactions, from my point of view. He is eating more and making an effort to do so as well as making an effort to go out and exercise.

His next scans and doctors’ appointment will be in mid June and if his doctor clears him, we will be going to see the Arctic this summer to see the polar bears.

 

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