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 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.

 

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.

 

We are now proud owners of a new vehicle a 2008 Jeep Liberty – a model of Jeep Cherokee – which we purchased last Friday thanks to the help of our friend Denise Kacavas help companies cut of us and her brother-in-law Jim who runs a dealership – Allen Mello Dodge Jeep – in Nashua, New Hampshire Jim sent a driver down to pick us up in Boston and Marvin – a sales guy at the dealership helped us figure out what vehicle we wanted as we wanted to also get get four-wheel drive and lots of legroom in the back seats for our tall teens.

After we found the vehicle we wanted Jim even bought us lunch. Thank you Denise, Jim and Marvin and everyone else who offered help and advice with our car purchase.

A number of you had offered to help us move from Boston to Chester once we knew the appropriate dates, well, we now have those dates our plan is to now disassemble all of our IKEA furniture on Friday, April 13th, and move all of our stuff out between 1 and 5 PM on Saturday, April 14th we already have the freight elevator in our apartment building reserved for the move-out and are hoping to convince Linda’s father to drive a U-Haul truck to and from Chester (we plan on having a convoy up to Chester (with boxes in all the extra vehicles and furniture parts in the U-Haul truck) For those of you who have already volunteered to assist us please drop us a note if you can join us on either of these dates. Thanks!

Doug & Erin – We will glad accept those empty boxes you offered us yesterday.

In other updates – I am not experiencing any treatment side effects from the ipilimumab (and if they appear it won’t be for another 10 days, but I am still feeling extreme fatigue, a poor appetite and itchy skin from my radiation treatments and very itchy skin from the same. One other life change I am pursuing is the resumption of my course work for my MFA in Photography with the Academy of Art University in San Francisco – I have committed to taking two courses this semester – classes started today.

 

Day 11 – Closer to Release   October 17th, 2011

My immune system continues to mend itself, thanks in part to nightly injections of filgrastim/Neupogen – the same drug administered to me to boost my white blood cell counts as part of my stem cell harvest. I have been getting these shots for over a week now. Nice to see they are finally making an impact.

My neutrophils are at a whopping 1960 (compared to yesterday’s 500), and my white blood cell counts are at 2700. Major increase in both, and these are based on 2am blood draws, undoubtably they are even higher now. Unless something goes awry, I will be discharged on Thursday or Friday, most likely (might be even sooner, but I’m not counting on it). Woohoo!

The other good news related to elevated neutrophil countsis that while I will still be more susceptible to germs and need to wear a face mask in confined places, I will no longer be neutropenic, meaning lots more real hugs from Linda and the kids (instead of the half-hugs we were settling for to avoid infection). Also, once I’m determined to officially be no longer neutropenic (three days of neutrophils above 1000 or one day above 5000), I will be taken off most the drugs I am still on, including the two IV antibiotics. Will make for more restful days.

It was otherwise a (good) boring day. I had extra infusions of magnesium and potassium, but nothing else extra. My platelets were at 20 as of this morning, so there is a likelihood of a platelet infusion tomorrow if it drops below with tomorrow morning’s early blood draw and analysis.

The girls spent the day out in DC, at the Newseum, with lunch next door at The Source. I was able to surprise them (under the masterful direction and help of our AMEX concierge goddess and friend, Tara) with special desserts on which the dessert chef wrote a message in chocolate telling them both how I loved them. Krystyana will have to share the pictures she took when she has a chance.

Bas spent the day with me, and we managed to get in three episodes from the first season of the sci-fi series Farscape (thanks to Amazon Prime Free TV), as well as another wonderful walk outside in the sun.

The dry mouth is still here but I find sores my mouth and tongue have started to heal, and indication that my system is slowly returning to some level of normalcy.

A good afternoon nap provided necessary balance, and I now find myself ready to be a day closer to heading back to Boston – a vision that is now finally within grasp.

 

The doctors here say that boring is good. Alas, today was not quite as boring as yesterday. It started with a low-grade fever at dawn (38.4C/101.4F), which resulted in my taking Tylenol as well as being put on an IV drip with an even stronger anti-biotic than I have already been getting.

When the morning doctor rounds took place, I was informed that my platelets were at a very low 9,000 per cubic millimeter (normal is 140,000 and higher), exposing me to potential problems with respect to bleeding. Considering that I had bloody sinuses during the night, this was a bit scary. I was also told that there was still no measurable sign of any neutrophils in my blood. Maybe tomorrow?

I was given five units of platelets, and stayed on my IV most the of the morning. Getting another CBC (complete blood culture) this afternoon showed that the platelet infusion has bumped me up to 17,000. Much better but not great. So I’m getting another five units right now as I write this.

The fever has been gone since this morning fortunately, and I had a pretty good afternoon. I even had Linda take me out for a slow 15-minute walk around the clinic. Pretty tiring but it felt good to be moving. The rest of the afternoon was a nap-fest all around. I am coming to appreciate naps more than ever before. Naps are good!

The dry mouth is still a plague, although I have found that I can manage chicken and beef broths as my main forms of sustenance – they are among the least difficult foods to process as they minimize stringy mucous build-up, and cause the least mouth pain. I even managed to get some minced, steamed (over 165F because of my neutropenia) roast beef into me last night via the beef broth, which made my body happy (protein!). Warm herbal teas – blueberry and raspberry – are good too. And Hall’s Sugar Free Citrus Drops are helping a bit too.

I’m also coming to grips with the stubble on my head and face. The lightly-adhesive lint roller is coming in handy, but I still keep having tiny stubble hairs come off in my hands, shirt, pillow, etc. I will be glad when all the stubble is gone, so I can have a real Mr. Clean look, shiny head and all. I like that comparison (thanks Sam!) better than the Telly Savalas or Yul Brunner look.

I’m hoping for no fever overnight and the start of measurable neutrophils in the morning, as that would indicate my body is finally starting to make progress after the necessary destruction to my immune system caused by the chemotherapy and radiation.

Linda and the kids have been wonderful to have around to give me comfort, support, germ free hugs, and ruffles. I have no idea how someone without such a support network would handle this process. So, again, thank you Linda, Krystyana, and Bas. I love you all!

 

Poignant Quote by Tim Russert   September 18th, 2011

I was exploring the fabulous news and media museum called the “Newseum” in Washington, D.C. yesterday.

One of the exhibits there is the office of Tim Russert, a news personality who died a few years ago at the tender age of 58. And one of the items there was a Starbucks coffee cup inscribed with the following words of wisdom from Russert:

“You can shower a child with presents or money, but what do they really mean, compared to the most valuable gift of all – your time? Vacations and special events are nice, but so often the best moments are spontaneous ones. Being there. Every moment you spend with your child could be the one that really matters.”

— Tim Russert, former host of NBC’s Meet the Press and author of Wisdom of our Fathers.

Beautifully said.