My Medical Update

2013-11-16T14:06:00.000-09:00

Dear Friends,

It is with a heavy heart I am writing on Sam's blog. On August 26, Sam lost his 4 year battle with lung cancer. If you would like to read more about his living life to the fullest, my blog picked up where he left off with his blog a couple years ago. You can find it at http://andnowformysideofsamscancer.blogspot.com/. Thank you for all your kind words, thoughts, and prayers during his battle.

Dara

Just because everything is different doesn't mean anything has changed. - Irene Peter

2012-01-27T18:29:00.000-09:00

Back after a few days off. Nothing has really changed in my condition - I’m mulling over changes to this blog, and in my daily routine, and I stopped posting while I going through the possibilities. Guess I should have left a note saying I’d be taking some time off - oops!

Dara and I at a hockey game last Saturday.

Blogging in the future - over the short term my posts may be sporadic. I’m considering some new things and haven’t decided on what they might be. If anything changes in my medical condition, I will have it up ASAP.

Walk today along tide flats on the Cook Inlet in South Anchorage. A dark band of ice is on the horizon with vapor escaping from open water beyond.

CT Scan results from last week - stable. Overall, my condition is stable. The scan noted a 6 mm (~1/4 inch) spot in my left lung - much smaller than two years ago, an unmeasured collapsed area in my right lung, and an area in the bottom of my left lung of “undetermined” activity. The scan also noted many metastatic lesions in my spine and pelvis. It is obvious my breathing is weaker from a few years ago, and I can tire more easily too - and I probably will never recover on either. But I have improved over the past four months, and easily can walk for hours without any problems, and faster than many.

Viral infection - about 10 days ago I started feeling the first symptoms of a viral infection. My sneezing passed it onto Dara who was home for a day this week. At this point I appear to be over it. Symptoms included fever and chills, headache, dizziness, sore sinus/nasal cavity plus throat, some shortness of breath, and fatigue. I chose to take it easy for the most part and not push going outside. And anyway, the chills were not pleasant in the freezing temperatures.

Otherwise I am feeling well. My back continues to ache at times. Clearly I need to do my back exercises and maintain better posture due to the very sore spots along my spine. My knees and thighs are not really sore but are unusually sensitive. It seems to me that the nerve damage from last summer has almost recovered, with some lingering sensations near both knees.

VA lined up. I have set appointments with the VA for a physical late in February, along with a class on benefits. I also received my ID card and a phone number for triage.

If you want to conquer fear, don't sit home and think about it. Go out and get busy. - Dale Carnegie

2012-01-20T18:16:00.002-09:00

Up late today and out the door after noon. Same story here - bright, sunny and very cold. Arrived at the hospital early - walked around outside before sitting inside calmly before changing for rehab. During the workout my heartbeat was 20-30 beats per minute lower than the norm recently, some due to the rest before starting. Otherwise the workout went fine. It had been two weeks and the weights were more tiring than usual. My final trip on the Eliptical was at a much lower rate after being tired.

Hoarfrost, power lines and a raven.

Feeling good otherwise. The sore throat from yesterday didn’t show up today. Tonight I am very tired.

Tomorrow we have an invitation to a local restaurant, and from there by bus to the Aces hockey game at the nearby Sullivan Arena. Sounds like fun.

One kind word can warm three winter months. - Japanese Proverb

2012-01-19T18:56:00.003-09:00

Inside today as the bright and winter days continue, with some freezing fog. Not much else to report other than sleep. I may be coming down with something - last night and late this afternoon I felt some nasal and throat irritation. Seems like more than a month from my last issues - great to have the break.

If my situation doesn’t progress I will try and make it out tomorrow to workout at the Hospital. Otherwise I may spend another day inside resting.

He who fights with monsters should look to it that he himself does not become a monster. - Friedrich Nietzsche

2012-01-18T19:45:00.000-09:00

Another bright and cold day in Anchorage. My trip started early, light at 10AM these days and still before the sun rises over the mountains. Cold enough to get me on the first bus that passed. Stopped off at Regional Hospital and waited inside for 10 minutes before the bus to Providence appeared. Once at the hospital, I changed into my sweats and drank my final bottle of contrast while I waited for the exam. After being called in, I was on the table and out the door in about five minutes, complete with the iodine IV and four passes through the machine. Out in the hall, I found a place to change, and walked outside to Tudor Road where I found a place for lunch and waited for the bus to the VA.

Front door of newish VA building in Anchorage today.

The Anchorage Veterans Affairs building is only a year or two old - near an entrance to the military base, and beside the new power mall anchored by Target, Kohl's and Lowe's. Inside the VA I was asked a few questions by a very nice guy who determined our net income is low enough to qualify for bebefits. I should receive my ID card within a week to ten days and will be contacted within 30 days for an appointment with a primary care physician. At that point I will also have an appointment to explain the benefits available to me.

From what I understand I can use all the services at their facility and they will take whatever my insurance pays as final - no copays. Also, I heard prescriptions run $8-10 and they don't bill insurance. Looks like I will have to mail the drug bills in to Aetna for reimbursement. I am also now eligible to use the hospital, which doesn't have emergency services. In an emergency, I am now able to drive onto base - and save the $250 ER copay!

Looking at last year’s expenses its not clear how much I will save. The new copay amounts this year amount to a huge increase, and if I am in the ER or doctor many times it just might be a big deal. It is also not clear at this point if any oncology related issues would be covered.

VA disability is an entirely different issue. My benefit specialist gave me an idea of where I might ask to find out if there are any groups that might know if I qualify for something. He gave several examples of how the system works but didn’t know about my condition and if there were any programs relating to it. He also gave me a brief rundown of his condition and how he doesn’t qualify for VA disability even with his severe medical issues, and no identified cause.

Otherwise feeling tired from the increased activity. My back is also more sore. I took a rare (recently) extra pain pill last night.

Also walked by the new Olive Garden with a packed parking lot. The sign out front said they would be open from January 23rd-27th at 4 PM. Heard a rumor that the crowd today was for training.

Tomorrow I will probably rest up and maybe fill my new pain medication prescription - 25% of the level fur months ago. Hopefully this level change will go as smoothly as the last one.

Nothing ever becomes real till it is experienced. - John Keats

2012-01-17T19:00:00.000-09:00

Warmed a little today and still well below freezing. Out to Providence Hospital to pickup my CT contrast solution and go to my support group. Still getting the computer system sorted out for the webinar - no dates yet for the roll-out.

Accident on the way back home today.

Felt good today if a little tired. Starting to feel something in my knees again - with no real pain.

CT exam is tomorrow. No eating in the morning while I drink the solution. Afterwards I am headed to the VA where I will finally drop off my medical records for a evaluation.

Experience is the child of thought, and thought is the child of action. - Benjamin Disraeli

2012-01-16T18:51:00.000-09:00

Another cold day today. Back out to the shelter. Everything went smoothly until home when I received a request to work on an issue with the pickup. Finished up the afternoon with problem solved, dinner complete and now is my time to rest.

Pretty little Husky at the shelter this morning.

Feeling good with a bit of a back ache. Also tired without my routine rest. We will have to determine how the new schedule with the dog shelter affects my fatigue.

Support group tomorrow - I have a couple of cameras that may work in the webcast project. While I’m at the hospital I need to pick up my contrast for my CT scan Wednesday.

Time does not change us. It just unfolds us. - Max Frisch

2012-01-15T20:40:00.000-09:00

Clear and cold today. Out for a drive north across the Susitna River near Talkeetna. Dara heard it was -20F / -29 C. We stopped and walked for a few minutes across Rabideaux Creek near where we seemingly sunk into the stream two winters ago on the Skidoo. Much too cold and frozen year as the snow has the firmness and texture as if we were walking on Styrofoam - barely making a boot sole depth mark as we passed by on surfaces groomed by previous machine travelers. On the trail and while driving we saw many moose today. One pair near dusk sprinted toward us moving along the highway, only to stop suddenly just before crossing and returning to the verge and hopefully back to the woods. As the light continued to fade after 5 PM we saw more off the road, dark roundish masses, seeming to come out for their evening snack of nutritious birch trees.

Heading northeast prior to crossing the Knik River into the Mat-Su.

Felt good today although I forgot to bring my midday Ibuprofen. The start of the walk was too brisk and I was short of breath, and worried my septum might be freezing. I brought one of Dara's devices designed to preheat my breath by creating a chamber in front of my face, and covering my mouth and nose, leaving only my eyes exposed. For some reason, the device seemed to further the shortening of my breath, and once removed and I slowed down - I was fine. As we started up the hill after crossing the creek, I felt myself heating up again even though we were walking very slowly. Due to the temperature and the late afternoon sun, we decided to walk back to avoid me sweating, and ensure we didn't having to deal with the wet cold today. The only new thing I wore was my fleece vest, which hadn't been out for almost a year. Maybe next time we will start earlier and walk slower.

Heading through Wasilla.

Tomorrow I plan to go back to the shelter.

Dara on the walk back.

There are two things a person should never be angry at, what they can help, and what they cannot. - Plato

2012-01-14T19:20:00.000-09:00

Temperatures dropped overnight (-13 F/ -25 C) as our weather pattern changed from warm storms from the south to cold high pressure in the Chukchi Sea north between Alaska and Siberia. Took the change as a sign and stayed in today napping. ‘The cold weather is supposed to last for the near future.

Otherwise feeling fine. Working on my diet change to yogurt - seems improve my symptoms and will keep it up at least for a few more days.

Planning to go out tomorrow for at least a local walk.

There is more to life than increasing its speed. - Mahatma Ghandi

2012-01-13T18:01:00.000-09:00

Sunny and clear in Anchorage today - digging out from the latest snow storm.

Small birds drinking in an open patch on Chester Creek today.

My appointment with Dr. Rabinowitz went very well today. He is putting me in for the study on cancer vaccinations and after looking at qualifications, I probably won’t get in. But he says they sometimes take someone who doesn’t fit their model - and I am not their ideal case in that I haven’t had some of the chemo they are looking to avoid, and they don’t address Tarceva at all. Regarding my GI issues and newfound weight, he thought I might try some yoghurt or lact-aid pills to see first if I have some sort of bacterial imbalance. He also ordered a CT scan to see the cancer progression, and included a look at my abodomen. The test will be Wednesday morning.

Snow on the roof of this complex today.

After my appointment I walked a long way home, heading a mile or so north to the Chester Creek trail and then back downstream to home. Along the way passed dozens of skiers, plus bicycles, joggers and walkers enjoying the fresh snow. The spot where we found water moving over the ice a few weeks ago was completely covered with snow today and I didn’t jump down to find out if water continued to flow just under the snow’s surface. Once home I was cold hours after I came back and jumped into the building’s sauna for a recharge.

Getting the ice ready to play north of Lake Otis.

Don’t have plans tomorrow but will probably go north and avoid the places with road problems last week.

Look deep into nature, and then you will understand everything better. - Albert Einstein

2012-01-12T17:32:00.001-09:00

Snow from the latest storm tapering off with levels in our part of town near expected levels. Clearing over the next few days should provide a window to dig out. With the exception of a trip to the local grocery, I decided to stay in and rest today, drinking extra water to see if my insides work better - my weight continues high and I have some pain at times. My research today lead me to believe I have a gall bladder issue, am lactose intolerant, or an imbalance between different organs. Tomorrow is my oncologist appointment and a chance to discuss all my new issues and plans for the future.

Otherwise everything seems to be going well. No pain or congestion. No sleep last night so I had a good nap.

It's not what you look at that matters, it's what you see. - Henry David Thoreau

2012-01-11T19:30:00.000-09:00

Holding on tonight with above freezing temperatures, waiting for the next storm forecast at a foot and a half (~ 0.5 m) more snow overnight. If we have more in the morning some neighborhoods in Anchorage will have trouble with buses and trucks moving through. Roads to the south and to Whittier are open, and artillery shells have been shot to bring down snow threatening the highway.

This bus bench has been dug out - wonder what it will look like tomorrow.

Out and back to the shelter today. All went well. Met trail groomers at one point - two Skidoos trailing their smoothing, grooving and compacting gear. I had seen the operation from a distance and today I hopped off the trail to watch them go by.

Feeling good. Might be more tired after walking a few dogs twice this week. No lasting pains. Yesterday I even forgot my morning medications and didn’t notice until the evening - looks like I’m ready to cut my pain medication again. Congestion is up so I’m back to taking Benedryl at night and Claritin D in the morning. Nothing in my chest, no soreness in my head or throat, and no swollen glands.

May go back to the shelter tomorrow barring loss of bus service from heavy snow.

Who looks outside, dreams; who looks inside, awakes. - Carl Jung

2012-01-10T18:35:00.001-09:00

Windy and cold in the Anchorage bowl with danger around us. The highway to the south is closed just out of town due to avalanches, and a winter storm warning to the north. Once the storm blows in we expect warmer temperatures, and even possibly rain in some areas.

Main entrance to Providence Hospital today. Some berms now cover roadside signs.

Walked to and from my support group. Small group today and no connectivity setup yet. Wore clothing better suited to less windy times and was much colder today. Once back home I napped. Feel OK from yesterday, with only the longer naps as a difference.

Tomorrow I plan to be back at the shelter.

He that will not apply new remedies must expect new evils; for time is the greatest innovator. - Francis Bacon

2012-01-09T14:45:00.002-09:00

Back to the animal shelter today after a few month’s absence. Nice to be back and challenged again by the dogs who all seemed happy to see me. The deep snow was a challenge to move through today, and great fun to some of the dogs.

Buddy was one of three black lab mixes today. He was great outside.

My estimate is four to four and a half miles (five to six km) walking today taking into account the trip to and from the bus on each end - from memory I generally made three miles at the kennel.

Felt good generally. Wore my jeans over a base layer, with four layers in total on top. Most of the time I had the top two layers unzipped. On the way back I did notice my lower back was tender to the touch. We will see how it feels tomorrow.

Support group is scheduled tomorrow plus high wind warning from midnight tonight throughout the day.

In the depth of winter I finally learned that there was in me an invincible summer. - Albert Camus

2012-01-08T17:58:00.001-09:00

Snowy day in Anchorage. Forecasts seem to have been correct and reports tonight of sporadic road closures in and our of town due to blowing snow. Had a nice walk near noon in the calf deep powder. Many others were out walking and skiing. No bikes today.

Trail marker along Chester Creek today.

Video from Cordova where we fished last September. Near the end the shot is where the Post Office is buried in the snow. The taco stand we found as a lifeline is also shown and barely exposed above the snow. I recall the structure as being on stilts - built above the ground.

Felt good again with congestion better after one round of Benedryl. Tomorrow I’m back to the animal shelter.

The real problem is not whether machines think but whether men do. - B. F. Skinner

2012-01-07T19:19:00.000-09:00

Light snow tonight in the midst of a weather advisory - by morning we should have a foot more snow, give or take. Walked a few miles after refilling a prescription at my local pharmacy - my first event of my new insurance. Good news that everything works fine even after the literature warned of limited providers and requested contacting them in advance to discuss options. I did call in advance and found out they have a four day turnaround for response. Guess I will have to think about how to plan better.

Residential building on my walk today.

Walking went well today. My robs are sore for some reason and I have some bronchial and head congestion. Stopped taking any anti-histamines a few days ago and will start up again tonight.

Tomorrow will be a trip to Costco if the snow isn’t too deep. And I will go for a walk and probably wear they my gaiters.

Life loves the liver of it. - Maya Angelou

2012-01-05T20:08:00.001-09:00

Early snow, lead to sun, and now evening fog. Overnight snow predicted along with rising temperatures remaining well below freezing. Out today for a trip and walk in the snow. Nice to be out again - especially the parts where cars were sideways on the road, or just off the side, and where snow machines were cruising past us on the multi-use trail when we were driving at the speed limit on the road.

Frost on a power pole.

Felt good again today with a spot or two of sensitivity in my back after pushing around the washing machine yesterday.

Tomorrow I will be dropping the pickup off for some maintenance before heading to workout at the hospital in the morning. Took some halibut out of the freezer for tomorrow night.

To succeed, one must be creative and persistent. - John H. Johnson

2012-01-04T18:52:00.001-09:00

Stayed in and watched outside temperatures rise today. Projects were the course of the day - cut my hair, balanced the washing machine, brought a few things up and running, and baked some buns for dinner. Still many things to do.

Felt good. Thinking my energy is from adrenaline. Even if I shouldn’t overdo it physically, it looks like I still have to deal with hormones. My walking the last few days has burned a little - maybe I will find a good place to let out a good yell to burn the rest. If I don’t do something tension will build and I will not be much fun to be around - crabby to say the least.

Tomorrow I hope to rode along with Dara as she works in the neighboring Mat-Su Borough. Maybe I can go for a nice walk while she is doing her thing and the scenery and company will make for a nice outing.

There are two ways of spreading light: to be the candle or the mirror that reflects it. - Edith Wharton

2012-01-03T20:08:00.000-09:00

Feeling good today - bright, cold and sunny. Rode the bus over to Providence for my support group. Had a nice talk today remembering some of us who didn’t make it to this year. And moving the group beyond the small room and onto the Internet lacks some local equipment. Maybe next week!

Dawn sunlight this morning.

Interesting bus trip home afterwards: first the driver missed a turn and had to drive into a parking lot and turnaround. Riders cheerfully pitched in with advice and lookout information. Later a stout high school girl stepped on wearing a skirt and sandals - telling everyone she had been waiting at the stop for an hour. Her legs were red and her toes ash-white on their outside. I looked in my bag for extra socks just as she was refusing help. She confidently told those around her that she was moving her toes and they were better. And then a few tried to politely point out the danger of this very cold weather - maybe late. Last time I saw her she limped out of the bus and off onto the snow. I hope she made it whole and is doing well tonight.

No plans tomorrow. May stay in for chores. I’m probably due a rest day.

To expect the unexpected shows a thoroughly modern intellect. - Oscar Wilde

2012-01-02T17:29:00.002-09:00

A degree or two warmer today but by no measure warm. Walked early while the trail lights were still on and back in an hour and a half.

City pickup plows on Westchester Lagoon this morning readying the speed skating track.

Feeling good. No issues today.

Tomorrow will be the support group and maybe followed by the oncology rehab workout. The support group may start as a conference call tomorrow with a long term goal of getting it out as a webinar, but we are not able to figure out the software at this point, and need to round up the hardware on the hospital’s system.

I was gratified to be able to answer promptly, and I did. I said I didn't know. - Mark Twain

2012-01-01T19:03:00.000-09:00

Out at sunrise for a two hour walk with temperatures between -5 and -10 F (-20 to -28C). Walked slowly and wore breathable clothing to vent and keep from sweating, and subsequently being cold. Back inside my clothes were dry yet cool. In another new strategy, I left my backpack at home allowing me to vent my upper body and keep it dry.

Freezing rapids create upstream flooding and overflow - and is beautiful.

No pain or congestion today. Also, I’ve been sleeping fine after I stopped taking any melatonin and Ritalin a few weeks ago.

Will try for a walk tomorrow before my Ducks play on TV at noon. Afterwards, at half past three, I’ll be facing sunset.

Happy New Year!

2011-12-31T20:24:00.002-09:00

Watched fireworks this cold and clear night from our living room - I actually don’t have to get out of my chair! The time as usual, early - 8 PM local and midnight Eastern. Walked after noon near the dog racing track off Tudor road - snowshoeing out to the track at one point to watch a few teams race by. Back home today’s pictures disappeared in a snafu - will have to change the procedure and delete pictures after I’ve copied over.

Feeling great today - the walk was good. Looking forward to another tomorrow!

It's a poor sort of memory that only works backwards. - Lewis Carroll

2011-12-30T20:00:00.001-09:00

Into workout at Providence Hospital this morning where I watched the gradual appearane of the mountains and blue sky. The workout was strong with 30 minutes on the Elliptical at 8.4 METS and no shortness of breath. Stayed on to test the system for the support group webinar that should start next week. The test had limited success in that it probably will start as a conference call until the kinks can be worked out.

Takeoffs yesterday were over Anchorage.

Felt good overall. A rider on the bus back gave me a nice crafty present - the mood was upbeat on the ride. Not sure about tomorrow. Temperatures are getting colder and I feel good walking outside.

A lost battle is a battle one thinks one has lost. - Jean-Paul Sartre

2011-12-29T18:42:00.000-09:00

Sunny and colder today. Out after daylight, first to view the exceptional snow removal in our neighborhood and then onto a bus and a good walk.

Blowing snow into waiting trucks.

The next phase of the city’s snow plan rolled into our neighborhood today as the graders pointed their blades inward to scrape the berms into the middle of the street where they were blown into dump trucks and carted off. In years past this effort has always been in the middle of the night. And with less snowfall in the past, our neighborhood hasn’t had the berms removed until late in the snow season.

Mountains show briefly above the clouds near the Anchorage hillside.

My bus ride and walk took me out to the animal shelter to remind myself I could make it all the way out and back. The return bus back was extremely crowded, almost to the level of Chinatown in San Francisco - almost. Around a dozen six year-olds rode in to the stop before mine. After they were off - only about ten were still standing in the bus. Things were tight enough that four riders had to step out the back door to let anyone out.

I’m feeling good, some tightness in my chest which I associate with scar tissue. My kneecaps are felt, and don’t hurt. My weight is down a few pounds and I could stand to lose another five or ten more (2-4 kg).

Leave all the afternoon for exercise and recreation, which are as necessary as reading. I will rather say more necessary because health is worth more than learning. -Thomas Jefferson

2011-12-28T19:46:00.000-09:00

Snowy morning in Anchorage. Out early and dropped off for my injection. As is the custom, my appointment is at 10 AM, I check in early and am usually out before 10. Today met the norm and I was out away from the hospital with my Xgeva injection before sunrise. After stopping off at a store for a couple of things before catching a bus home.

Pre-dawn view from the walkway between the Providence Hospital and the pod with the Cancer Center.

Generally feeling better once I am out and walking. My major concern today was my ballooning weight after the holiday and trying to make sure everything internally is moving. We will check in a few days to see if all is well. Otherwise my pain level is good and congestion is in check. Tomorrow I’ll have to find somewhere to walk.