Attitude is Everything...almost

Passed another recovery milestone by walking 18 holes of golf and hitting a ball (quite well in most cases) from 125 yards in! The weather was fabulous and what a joy to be out with friends. I felt quite good when I finished. A surprise, since I thought I would be exhausted. Icing on the cake was winning the afternoon bridge game (even though I missed bidding a slam!)

No Skiing or skydiving....

I saw the neurosurgeon yesterday after having a set of X-rays on my neck in various positions. (The head X-ray technician asked me if I realized I had the most skilled surgeon in the NW. I assured her I did!.) Dr Antezana said he was pleased with my progress and saw no reason to see me again for a year unless my oncologist thought I should see him. So he has turned me over to my primary care physician and the oncologist. He said it could be up to a year before we know how much the nerve would heal and he wanted me to continue physical therapy to get as much strength back in my arm as possible.

When I asked him what I could do, he said no skiing, skydiving or marathon running and I should wait 9 months or so before getting back to pickleball. He did say i could start working my way back into golf and should be able to hit a driver by the end of the summer.. So I came right home and reupped my golf membership at the country club!

I am so grateful to my amazing medical team. They are really remarkable people who have collaborated to give me a very high quality of life while I am fighting stage IV cancer.

Now I am looking forward to a summer of golf and travel!!

Glass 99% Full

Today was the day that I saw my oncologist and found out the results
of my scans. While waiting with Becca in his office, the young man who
is in charge of the experimental trials popped into the room and just
starting chatting with us about all the new melanoma trials they were
doing and his medical volunteer work in Haiti. My first reaction was
"oh, no..the scans must have been really bad and he is here to talk to
me about joining a trial." After about 10 minutes, Becca ask if he
were there in an official capacity. He laughed and said " why, no." He
had just seen my name on the list of patients and wanted to stop in
and see how I was doing. Boy, did I breathe a sigh of relief!

Dr. Lufkin was hard to read today as my scan are not completely clear.
There is a lot of uptake in the neck, but that might be just the
result of surgical healing. I have two new area of uptake in my lung
and pelvis, but no masses show on the CT and the uptake is just a
little above background. So we are in a holding pattern with more
definitive scan to come in four months. I was directed to go and enjoy
the summer and not to let the scans interfere with any travel plans.
So the news is good...my disease is not rapidly getting worse and we
hope that all the tumor is gone from my neck.

My enjoyment of this news has been somewhat tempered by the fact that
I am in a great deal of pain this evening that is keeping me from
sleeping. I am having physical therapy to strengthen my left arm and
neck. Something I did in today's session has inflamed the nerve down
my arm and into my hand and so far the pain pills have not touched it.
Let's hope that this is temporary and will improve by tomorrow so that
I can revel in the good news and the absolutely gorgeous weather we
are having.

 I got a copy of the x-rays of my neck and have attached it so that
you all can see the amazing hardware that is holding it all together.
Don't you think the TSA folks will have fun when I light up in the
body scanners!

Good News From the Neurosusrgeon

I had a very positive meeting with the neurosurgeon today. I had X-rays first and the technician was amazed in the hardware that was in my neck. He had never seen anything like it. He showed the X-rays to me and I was amazed at how the things that had been verbally described to me actually looked. Dr.Antezana said that everything was in place and looked like it should at 7 weeks since the surgery. He reiterated that he had really disturbed the nerve and what I was experiencing in my arm and hand was to be expected.  He hoped the symptoms would decrease over time. He told me to wean myself from the brace and to get back to normal activities as I can,but stop when there is too much pain. He also prescribed aggressive PT to strengthen my left arm and neck.

I am overjoyed with the news and anxious to be finished with the brace and hopefully get more function in my hand and arm.

 Spring has sprung at Willamette View

I have been meaning to write a post for quite a while but typing long passages is difficult because the thumb and first two fingers on my left hand are tingling and not working normally. My left arm is quite week so typing  is a challenge.

It is also quite challenging to live and sleep in a hard plastic collar.Sleeping was very difficult and painful in the hard collar, but I have been sleeping much better since I graduated to a soft collar two weeks ago.. I have found out how fortunate it was that I purchased the apartment at Willamette View. I have everything I have needed since the surgery. A  home health aide helps me two days a week with the things I can't do: shower, wash my hair, change the bed, and do the laundry. I also have my meals provided so I don't have to worry about cooking. The only exercise I have been able to do is walking and I have walked 3-5 miles each day wither outside around the interesting neighborhoods or in the great athletic center we have on campus. I have been getting a massage here as well as going to acupuncture off campus. it is great having my sister here and she has been a great help as my chauffeur.

I was in a lot of pain at the beginning but by 6 weeks I was off pain killers, but will have to take pills for the nerve pain and neuropathy as they will be the lasting results of the surgery. Don't know how long it will take but it is most annoying to have my left hand not working and having shooting pains down my arm and hand.

I was getting quite down after 5 weeks of being quite limited in what I could do but a 10 days away was just what I needed. My dear friend Phyl drove over from Montana, picked me up, and took me to the coast after a night stay over in Corvallis. We were joined by Carolyn Miller for three days of wonderful meditation and discussion stimulated by recordings from Pema Chodron. Of course the food was delicious and we relaxed with some fun movies.

I got dropped off in Corvallis and had a wonderful, exhausting week chatting with friends at two brunches, at my book club and science dinner club. I went to a fabulous piano concert and played bridge with many of my bridge friends. Sophie stayed with me for the entire week, waking me at 6:30 every morning ready to go. We took walks every day. She is such a loving dog and I really miss her in Portland. The week really helped my morale.

Since my return to Portland, I have felt exhausted and have slept 8 to 10 hours a night with a nap in the afternoon. I have been concentrating on helping my sister who is going in for a knee replacement on Thursday. I will go to the hospital with her and folks here at WV have volunteered to drive me to and from so I can visit her every day..

One Month Out Already!

Just had to include this photo of Kai and Alex.
Will try and get one of Dash and Finley if they will stay still long enough for me to snap one!

It has been one month since my surgery and we are still trying to get my drug regime so that I can manage the nerve pain and get some sleep. I think what is bothering me the most at the moment is only sleeping for one hour at a time. One really doesn't get rested that way. I am usually up for an hour between 1 and 3 am and I read and have some tea, take more pain pills and then go back to bed to try to get some more sleep.

Other than that...I am so happy that I have this apartment at Willamette View. I have home health aids twice a week that help with my showers and things I can't do by myself...like laundry and changing my bed. Everyone here is friendly and very interesting. It is great having my sister here. We think we have seen more of each other in the last month than we have in the last forty years!. She has been my wheels and gets me out and around. But she is facing a knee replacement April 18th so I will have to find another way to get around until I am able to drive.

It lifts my spirits to have my kids and grandkids so nearby. I have dinner with each family once a week and am part of their activities. Am looking forward to Seder at my daughter's tonight and then Easter and Kai's birthday on Saturday and Sunday.

I am really looking forward to going to the coast for a meditation retreat with two friends and then a week visit in Corvallis. I hope to see as many of you in Corvallis as I can...It will be great to catch up in person.

Up and Down but I think the trend is up.

Today was three weeks since my surgery and I believe that things are generally getting better. I am settled in my apartment and  have most things figured out. But I get quite frustrated at how many things I drop and can't pick up. I am on a little less pain medication but the nerve pain and neuropathy in my left arm and fingers is pretty severe. I am dealing with the side effects of  the drugs I am taking. There are always the issues with constipation cause by the opiates (it is a good thing that I like prunes!). but worse is the insomnia, blurred vision and depression caused by the Gabapentin for nerve pain. I can only sleep in one position and that last about 2 hours before I wake up in pain and have to move about to relieve the pressure of the brace. Then I am wide awake and can't go back to sleep. At first the insomnia upset me, but I have decided not to fight it and just try to work with it. So I usually get up, make myself a cup of Sleepy Time tea, and read a chapter or two of my book and then try going to sleep again. I can usually get in 5 to 6 hours of sleep that way. With a nap, I seem to be doing OK and am not too tired during the day.

When I first got to the apartment, I had a helper come in for an hour a day to get me settled and things arranged so that I could get to the things I need. Now I am having someone twice a week to change the beds and help with my showers and hair washing and drying.

The weather has been quite nice and I have wanted to get out to walk (When it is nasty I can walk on the treadmills in the health center). I am not having a lot of luck finding someone here to walk with me. I was told that the first fellow who volunteered was the fastest walker here. But he almost collapsed halfway through the walk and I thought I might have to call 911 for him! Becca walked with me yesterday and saw that I am very stable on my feet and careful to watch what is coming up in front of me so she decided that I might be better off just walking by myself and not having to worry about someone else.

I am really missing friends in Corvallis and am in the process of planning a week in Corvallis in early April to see everyone, play bridge,go to book club and dinner with my dinner group..Will also fit in some appointments and a couple of potluck brunches. It is something positive to look forward to. As always, your kind thoughts and healing energy help me to fight the pain and stay positive.