Wednesday, January 23, 2013

The road from here...

seems to be getting a little steeper!

I had the P.E.T. scan done last week and got the results Monday. The mass (they're using that word now) in my left lung is 3cm instead of the 2.5 they originally thought. I asked if that meant it had grown that much in that short a time as was told no, it's probably just a better image.

The rub is that they also found 2 lymph glands in my chest involved; one in almost the center and one just left of center. That makes it "Stage 3" . That also takes a lung transplant to fix the IPF off the table. Now, besides the radiation for the mass I'll have to have chemo for the lymph glands because they can't radiate them because it will damage my heart.

Friday I go in for a CT guided needle biopsy so they can pull some samples from the growth in my lung and figure out what type of cancer it is. The doctor scheduled an appointment to give me results on Monday, but the radiology people said she won't have them until Tuesday; when I told them she already said I'd have them Monday they said "maybe she has some magical strings she can pull". 

They said that with the IPF there is a chance that they will collapse my lung trying to do this on Friday and that if it does, when I come to after the anisthetic I'll have to stay overnight, but they still didn't think it was that big a deal.

I have my first oncologist appt. set for Feb. 7th.

National Jewish Hospital in Denver finally called and I have my one hour phone interview on Monday before my results appointment with my pulmonolgist. I don't know if they'll schedule a visit then or not; hopefully the weather cooperates with whatever they decide to schedule. The oxygen company will loan me a portable to get there with and if I have to stay a few days, set me up a regular unit as well for while I'm there as they don't really want you hauling bottles around cross country and I couldn't fill them when I got there anyway.

I've been spending some time escaping lately, when I can. So far today I've only managed a half hour anime episode and listening to a bit of music. But I've been trying to listen to music every day (my era, thank you!) and read some; I've gotten some movies watched and trying to get to one of those a day as well, though the days are busier than you'd think between phone calls, e-mails, therapy appointments and doctor's visits.

Dottie bought me two belated Christmas presents, a Kindle and a Crosley stereo that will spin '78's (yes, I have many), 33's, 45's or cassettes and transcribe them to disc, besides playing CD's. I've dug out the albums I recorded in my school stage bands to transcribe, along with some 33's I can't find CD's of and a box of 80 or so cassettes that were my Dad's of big band radio airchecks he had recorded while he worked in his darkroom. 

The Kindle I've managed to happily load with all of the Bronte sisters novels and poetry, even finding the juvenalia I'd never managed to acquire; the complete works of Mark Twain, Jules Verne, H.G. Welles and some others like Wilfred Owen that I'd always intended to read and never gotten to. Twain is especially a comfort as I can pick up an editorial he wrote, or some of his correspondence and never fail to smile within seconds. My sister bought me a book of Groucho's letters that I think will be the same way!

I'm also trying to get Dad's negatives and mine scanned and onto a hard drive to digitize them into something more compatible with modern technology, as when I'm gone I don't figure anyone will be wanting to look through them. I had bought a nice flatbed scanner to do that with and just hadn't had time; now I have to get it done.

When it gets warmer out I need to drag an oxygen bottle to the garage and start tagging tools as to which were Dad's, a few that were his Dad's, and what some of mine are as I don't know if anyone will realize what they are or what they're for. I also have his flathead Ford manual, his 1955 Motors manual and the one he bought his Dad to cover the '59 Ford wagon I remember Grandpa driving when I was little. 

We're trying to plan a few 3 day weekend trips as well when we get a chance if I'm up to it. Dad took us to the Will Rogers Memorial in Claremore, OK when I was 6; I've been planning to go back ever since and after 51 years it seems like it might be time! 

There are some other short hops like that I'd like to make, but we'll have to see how that first one goes. 

Going to go walk on the treadmill for a while...

May the life be kind to each of you!


Sunday, January 06, 2013

Here we go again...

   Happy New Year to each of you...I kind of stayed quiet for the last bit hoping each of you was getting a wonderful start to your New Year. I didn't want to bring my cloud of gloom to anyone's party...

   I saw my pulmonogist again on Dec. 27th and the high-res CT scan confirmed her diagnosis of idiopathic pulmonary fibrosis. Steroids won't help; long-acting inhalers won't either. There are some orphan drugs and experimentals that may slow the progression a bit but I have to get in for the 2nd opinion she's trying to schedule me for in Denver to see if they have anything that will work in my circumstances.

   In my last post, those numbers I referred to are that 60% of those diagnosed die within 2 years; 80% within 4. I asked her for confirmation of those numbers and she nodded her head "yes" and said this is a very vicious disease and that was why she was trying to so hard to schedule all these things as quickly as possible.

   Another curve ball found me in that she also told me that in the high-res scan they found a "spot" on the outer wall of my left lung. I go in next week to have a P.E.T. scan to see if anything shows up in my lymph nodes; if not then I'll have a needle biopsy to determine what it is. She said if it's cancer, the only option for me is radiation, as cutting into my lung will only make more scar tissue and I'm already at less than 50% pulmonary function.

   She also wanted me to see a cardiologist for a further exploration of the heart testing I had in November, to make sure it was up to all the things that are coming up. I saw him this last week and he said that it is and that the place they were worried about is actually a place that is very hard to get a good picture of when you weigh as much as I do (again).

   My weight has compounded as my activity levels have dropped and I'm as heavy now as I was 2 years ago when I hired into the warehouse I worked in. The 50 pounds I'd dropped has returned in 6 months, which plays into the other treatment option I may have to look at "down the road". She said if I dropped about 70 pounds I could be eligible for a lung transplant, if a donor could be found. That led me to ask her if I chould cancel the "organ donor" on my driver's license as I'd just read about a girl in the UK who died after having the lungs of a 5 pack-a-day smoker transplanted into her. She said no, that things are screened so closely that would never happen here and if I want to donate my organs that someone would make good use of the other ones.

   An oxygen therapist came to see me on Friday, the same guy that brought out my CPAP machine. I've gotten more good information from him than I have anyone else connected with their company and Dottie and I spent some time discussing ways I can get back to my little gym downstairs (the machine I have right now doesn't produce enough for me to really walk; he said that if I take my "E" bottle down there I can't put a longer hose on it and to get the flow rate I need would be problematic. Then he made a note on his paper and said that he would have them trade out my 5 liter-per-minute machine for one that flows 10 lpm; if I asked them to send him out when they call to schedule, he will measure the distance I need to get from where it sits to the treadmill (50' hose plus 7' canula leaves me about 8 feet short) and get a hose made up that will work and measure the resultant pressure drop (why they don't like to do that) so I can set the machine accordingly. He also explained the mechanics of getting a portable to take on the road that will run from a cigarette lighter or 110 in a hotel room so I can sleep using it, along with a battery that will power it for a couple of hours if I need it to.

   This coming week I start pulmonary therapy on Tuesday so they can try to show me ways to make better use of the oxygen I do get. When I pay attention to my breathing I do OK, but when I'm thinking of other things then it gets away from me sometimes.

   So that's the news from Lake Woebegone...

   May life be kind to each of you!