Both ups and downs...

Moving onwards. The good is that I continue to feel stronger and have more energy and have been getting more sleep. While I'm still a lot weaker than "normal" Molly, I'm worlds better than I was even 2-3 weeks ago. At that point it took all the energy I had to roll over in bed or get dressed. This past weekend I was able to spend most of Saturday working with wonderful friends (thanks again so much to you all) making great progress packing up my Corvallis house and do a number of errands and projects and social visits on Sunday. So that's very encouraging.

However the paralysis on the right side of my face continues to worsen. My skin just droops, which makes it difficult to eat, and that eye is unable to blink on its own, which means I have to put eye drops in it every 15 minutes or so round the clock to protect it which is a real drag.  So a) that's not good just on its own and b) the fact that most of the doctors agree it's being caused by something pressing on that cranial or facial nerve in my brain is causing everyone some worry.

Yesterday I saw both my oncologist and radiation oncologist and received the third of 4 Yervoy treatments. We also discussed the results of the scans I had done last week and everything looks good except the brain. There are no new tumors and everything that we had already been keeping an eye on has either remained the same over a period of months or is now shrinking. So there's at least evidence to suggest that my body is responding well to the treatment. That is the good news!

The discouraging news is what's going on in the brain (and due to that, the face). In addition to the one site where they see tumor in the cerebellum there is a new "density" site that they're not entirely sure what it is. However they believe that it appears to be blood, perhaps with a tiny bit of tumor. They're not sure what's causing it but given how far out from surgery I am and the fact that I'm not on any blood thinners they think it's much less likely to be a delayed complication from surgery and much more likely to be caused by the melanoma, which evidently is known to cause bleeding in the brain more than any other type of cancer.

Given all this, the recommendation is 2 weeks of radiation to the entire cerebellum.  If I understood him correctly he was saying that not only does the radiation hopefully zap both the known and yet-to-be seen tumor cells, it can also help stop bleeding and reduce the density of the blood already there. Plus the doctors have seen that radiation given during Ipiluminab treatment seems to have a synergistic effect better than either radiation or Yervoy on its own. So they're hoping to leverage that for my healing.

My oncologist's hope and plan is that this radiation would stop the tumors in my head (and hopefully release the pressure on the nerve so that my facial paralyzation improves) and that after I've completed my last Yervoy dose in 3 weeks they'll be able to just let me rest and recover and heal and have my immune system get back in control of the cancer again. I'm certainly ready to be done with being poked and cut open and zapped for awhile.

I start my first radiation treatment this afternoon. I don't know how debilitating it will be but I hope not too much. I do know it's supposed to make me pretty tired (on top of the Yervoy which also does that) and so I am putting everything off until I am done and hope I can enjoy all my Thanksgiving visitors.

Keep that blue light, healing thoughts and positive thinking coming my way.

Molly

So Alone

Sometime early on in this journey I got a card with a picture of Mother Teresa on the front saying "I know that God trusts me" and inside it said "I only wish he didn't trust me so much!?
      That is exactly how I feel right now. Things have been really rocky since I returned from Denmark. First I had the emergency surgery to remove the brain tumor. I felt that I was coming back from that. I made the decision to sell my house in Portland and move to a bigger apartment at Willamette View. It looked like the tumor might be growing back in the brain so I started treatment with Epilidimide.
      Most people get though the four treatments with some diarrhea. But I developed a less common effect on the pituitary glad. First my thyroid shut down and I did not have enough energy to turn over in bed. I had to cut short my retreat with Phyl and Carolyn at the coast to come back and get treatment. Then the next week I had vomiting and had to come in for two days of fluids and anti-nausea medication. Some time during those two days I suffered a small stroke that effected the right side of my face. My right eye does not blink and I will probably have to wear some sort of protective patch and use artificial tears. I will have to see what the eye doctor says today. Also liquid and food can seep out of my mouth which makes it a challenge will eating or drinking. in company.
     It is very hard not to get terrible discouraged and depressed. I feel so alone right now. I don't want to burden my kids any more than I already do and both of my adoring partners are gone. I heard yesterday that there is a support group for women with stage 4 cancer but it meets at a hospital clear across town and I don't know how I could get there. In order to keep moving forward, I am working on the new apartment and I will see how I might get to the support group as there is just too much negative going on right now and it is so hard to keep going. I know that each moment I have is a gift but appreciating that is harder and harder each day.

Back from Denmark

Well, I had a fabulous trip to Denmark! What a beautiful old country and Mogens and Grethe showed me a wonderful time. I had time to see their two girls and their families and they had wonderful birthday celebrations for Lene and me. After all the kids went home, Mogens and Grethe took me on a whirlwind tour of their country and found such amazing hotels to stay in (a 16th century farm and a 16th century mansion house right on the square of the oldest town, Rige (700 AD)  in Denmark.)

But after I got home, things came crashing down...my balance is off and now my right arm is hurting worse than the left one did. I am worried that we didn't get all of the tumor with the two operations and it has moved to the right side of C6. I have MRI and PET scans scheduled for the beginning of next week. Keep your fingers crossed that they won't find the worst it can be.

For the first time I am really scared!!!

69th Birthday

Here I am in Denmark celebrating my 69th birthday with 17 of my Danish family ranging in age from 18 months to 75 years. We celebrated with gifts, some hand-made presents, and Danish pastries. Ten years ago no one would have believed I would live 2 years and here I am 10 years later enjoying family, friends, travel, and golf. I am so fortunate to have my wonderful family, friends, and medical team. Thank you all for your love and support. May we spend many more years together.

It is the middle of the summer already!!!

     It is hard for me to believe that it is mid-July already. I have been home since the end of May and each day has been filled. I am working very hard to savor every moment.
     Luckily I am getting stronger each day and no longer needing a nap. I am learning how to use my left hand and arm although it still tingles all the time and periodically I get pain shooting through it. I am hoping that this means that the nerve is healing and regenerating. One annoying thing has developed since the last surgery and I don't know if it is related. But on some nights when I lie down (could be a short time or half the night), my nose completely stuffs up and I cannot breathe or sleep. Sometimes I just have to sit up for a hour or so until I can breathe again. My doctor didn't think it was very serious...but I need my sleep!
     My days have been filled with friends and visiting relatives, great food, bridge (Karla and I even won our division once), golf (I can't drive the par 5's and am not playing well but it us wonderful being with friends and walking the course), meditation (not nearly enough) and long walks on the beach.
     I am so thankful that Dr. Lufkin gave me the summer off from treatment and that I am healthy enough to really enjoy it.

A Surreal Night (Should have been posted April 20. 2013)

So last night was very surreal.

I had got the good new from the oncologist, had a delicious lunch at
Jade with a dear friend from Corvallis. My PT appointment was very
positive as I am gaining strength in my left arm and flexibility in my
neck. She ran me through a lot of new exercises for the next week. My
arm was tired but fine. Joined friends for wine and food to celebrate
my news and then played some good duplicate bridge. Headed to bed
tired, but looking forward to the weekend.

Just after I got settled, my arm and hand began to throb with very
sharp pains in the hand, wrist, arm and neck...which grew to be as bad
as anything I had experience since surgery. It really quite frightened
me. Got out the heavy duty pain killers and took one hoping it would
calm the pain. It really didn't touch do much to lesson the pain so I
got up and read for a while. Took a second pill and wrote my blog
posts. The pain began to abate about 2 am so I went back to bed hoping
to get some sleep.

No luck at all. I felt wired, like I had taken speed. I tried
everything to relax...meditating on my breath, Chen's whole body
relaxing, listening to soothing music. Finally gave up at 5:30 and
watched the sunrise over the Willamette. I really don't think I slept
at all..can't remember if I have ever had a completely sleepless night
like that.

Today should be interesting as I have lots on the schedule and the
pain and tingling is returning...hopefully it won't be as bad as I
really don't want to get back on the pain killers (of course, it is
Saturday so I can't talk to the doc or PT!)

Just going to take it as it comes and hopefully get in a long nap.

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.

Trying to figure out the new normal

I am sitting in my apartment typing on my iPad hanging on a music stand at eye level.

I moved over to the apartment yesterday afternoon... It took two carloads to get all my stuff over here. I was greeted by my neighbors with flowers and offers to help at any time.  In the evening I had dinner with my sister and Corvallis friends, Mimi, Lita, and Anita and Solon Stone… It was a lovely time.

Sunday I had a full day, spending the morning with Jon and the kids. Then in the afternoon it was wonderful to see my Altrusa friend, Karen French, who dropped by with mochas and took me for a wonderful long walk.Yesterday I had an appointment with the PA to check on my progress and get my stitches out. Both of my incisions are healing very well.  One of the things I need to work on is not looking down so much. (Do you realize how many things we do that require looking down?!) The PA said I could start walking short distances (0.1 mile). I think she was shocked when I told her I had already been walking 1+ miles twice a day without exhausting myself since I got home from the hospital. She would prefer that I did my walking on a treadmill, but I am hoping to find a walking partner here so that I can walk outside and go for longer distances on nice days.

I would love to have visitors. As most of you know, I am not great at being alone and most activities I like doing (reading, doing puzzles, knitting, etc) require looking down.

What a difference a day makes!

Just wanted everyone to know that I am back on feet again. The doctors made some minor adjustments in my medications. But we're pretty sure we have identified the cause of the nerve pain: vibrations from the walker on my arm and neck caused by the rough sidewalks. I took a long walk this morning (about a mile!) with Becca and Alex. I held onto Becca's arm and had no problem. And this afternoon I took another long walk with Jon

Now what I need is a clever designer and builder who can design a reading/computer lap table that will allow me to read and use my iPad without putting stress on my neck or bad arm.  Anyone want to take on the challenge?

Hope the sun keeps shining.  It really lifts the spirits!

You've got to expect a stumble or two along the way

Hi all,

I still have to pinch myself when I think about how well I am doing. As a result, I probably am doing too much and so today is a forced day of more rest and less activity due to much higher levels of pain. Time to begin watching all those movies in my queue on Netflix.

Yesterday, I had two long walks (about 1/2 hr each) and a visit with Dash, Lori, and Finley.  I found out that the rough sidewalks send vibrations up the walker and inti my bad arm which is very irritating to the nerves. So it looks like I will need to just walk around here holding on to someone's arm rather than using the walker.  I am interacting with the kids from a sofa or chair, but that still requires bending my head down which I am not supposed to do.

So by bedtime last night I was in a significant amount of pain and had a more restless night of sleep. Ice and a hydrocodone pill this morning helped some, but it's still a lot rougher than the past two days. So definitely a quiet movie day is in store..

Also, is anyone heading up to Portland in the next day or two? I need some things brought up from my house.

Thanks to all...keep sending those healing thoughts.

I'm home! (almost)...

Modeling the latest in stylish attire.....

I am home at Becca's for a few days. My discharge from the hospital was complicated by the hospital changing over to a new computer system over the weekend and a on-call Dr that had two hospitals to cover and an emergency surgery. She was supposed to show up at noon and didn't get to me until about 6:30 pm and seemed to be running on fumes. So I ended up coming home with only a partial list of medications that I was taking and no instructions for wound care. (Luckily we clarified all of that this morning by talking with the PA who helped with my surgery.)

A huge thank you to Catherine Mater who came for a short visit and ended up staying all day and bringing me home to Becca's house so my kids could cope with family and work issues which were complicated by the fact that no one expected me to come home before Monday or Tuesday.

I am sitting in the sunshine using a calligraphy desk that sits over my knees while I am sitting on the sofa. I will take a long nap this afternoon and hopefully get out for a walk around the block in the sunshine..

Thanks for all the healing energy you are sending my way. I think it makes a huge difference!

Molly

Some adjustments needed

So it was to be expected that Mom would likely have to come down slightly from her high of yesterday. And today was a day of adjustments:adjusting to new medications, new nurses, and new aches and pains. After having an unbelievably amazing nurse yesterday, we actually had to call in a supervisor and have a nurse changed today. In general this has been a rare issue at Providence and we appreciated the support we got from staff management. It sounds like they're going to be very articulate about who they assign to her for the remainder of the stay.

 She does continue to heal and make progress though. So all in all a good day.

What a difference a day makes!

Wow.

So we know that there will be lots of ups and downs along the way and a couple steps backward for large jumps forward and we don't want to jinx things -- but Mom's operative phrase for this afternoon has been "Pinch Me".

As in, "I can't believe things are going so well". In the last 24 hours she has:

• gotten a strategy that has her pain under control while dialing way back on the narcotics
• had a PT and OT session
• has gone for multiple walks around the floor
• has gotten rid of her catheter, has had a wonderful shower, gotten her hair washed, brushed her teeth and gotten to put pajama pants on (don't underestimate the power of those last four in feeling more human again)
• has found out that she doesn't need to wear her neck brace when she's in bed (allowing for more comfortable reclining and also for being able to see a tv/computer/ipad screen a little more
• has regained some of the strength in her left arm (the surgeon nicked/beat up on some of the major nerves to it, greatly weakening it and causing pain...hopefully only temporarily)
• has been able to start eating a little more than just liquids and so has gotten a little more strength/energy back
• has had a wonderful long nap thanks to the increased comfort of her bed now that she has her foam pad (thank you! thank you!)

It's kinda crazy. And I know there will be really rough days ahead, maybe even before she's discharged. But we'll take it for however long it lasts.

Sounds like at the moment, best guess is Monday for discharge...I think it mostly depends on a) when she regains all her swallowing ability and b) whether they want her to do a little more PT. Plus I think they just want a few more days to keep an eye on her and how the nerve pain and strength comes and goes.

Thanks all for all your good wishes and energy. Something's working, that's for sure.

b

you win some, you lose some...

So sadly, Mom doesn't look quite so cool, collected, and stylish wearing her version of this collar. Then again, this lady didn't just go through 7 hours of surgery hacking out bone and tissue and then putting in metal scaffolding in both front and back. So there. :-)

The good news is that Mom has moved from ICU to a regular room on the neurosurgery/orthopedic floor. She's sitting up for periods of time and doing a lot of maneuvering on her own and is eating soup/jello/pudding. So that's all good.

BUT....she's in great discomfort, not least because this brace won't let her get comfortable and presses against her sore neck and back whenever she tries to recline. And the beds here are significantly harder than the ICU beds (so thank you so much for all the offers to bring her foam pad up here. It's going to make a huge difference) She's also getting intermittent screaming nerve pain down her arm and having trouble swallowing due to a swelling in her throat.

Last night Jon and I had gone home after spending some time in the ICU getting mom settled. about an hour or so later we got a call from her nurse. She was having a bad reaction to the narcotics and was having bug hallucinations and an anxiety attack similar to when she was on IL-2. By the time I got back there they had gotten the medications figured out and she was back to her old analytic and logical self. I stuck around past midnight to keep an eye on her just to be sure.

We've been spending most of the afternoon thinking through strategies for pain management, for trying to position herself more comfortably, and for finding some way to keep occupied/distracted/entertained since she can't really hold anything/look up at screens, etc.

So continue to send your healing energy this way....I have a feeling tomorrow may be the worst and then things will start to get better. But meanwhile, Mom continues to amaze her doctors and nurses by her ability to spring back.

More tomorrow....

Onwards with Recovery

Becca here...

So, the surgery ended up being just about 8 hours (or probably the surgery itself was more like 7) and as the surgeon said when he met with Jon and me "She made me work for it". Jon noted that he also looked pretty proud of himself for all of the negotiating he did around arteries and nerves. And given his description, it did sound pretty impressive.

It also sounded like there wasn't a whole lot of tumor presence in there (though that's not totally clear...waiting to see all the path reports and talk to her oncologist about how he interprets things) which is at the same time both a bit disconcerting and really great news. Structually all went as he expected: Mom's now got pins and plates and cages and is fused from C5 to T1. (or from c5 to c7, but has some of the anchoring down to T1..that's also not clear).

She was doing okay in ICU when Jon and I saw her, though obviously she'd been through the wars. I think she should be moved into a normal room tomorrow and it sounded like she'd likely be in the hospital another 5 or so days...but we should know a lot more in the next 48 hours.

Thanks for all your thoughts, prayers, and energy. We firmly believe you all are part of her success story.

Becca

Surgery Postponed

Just talked with my neurosurgeon and my surgery is on hold. He called to say that he has been called in to operate on a young man who needs brain surgery tomorrow. He would have gone ahead with my surgery afterward but confided in me that this surgery was going to be "hard". I don't want him operating on my when he is tired so my surgery will be postponed until Wednesday or Friday. I was impressed that he called me personally and asked what I wanted. This will be for the best and I hope that the surgeon is able to help this young man. BUT it be hard emotionally and  psychologically to readjust to another couple of days of waiting.

Surgery Tomorrow

Fabulous long hand clapping and foot tapping concert by Pink Martini and the Corvallis Youth Symphony last night. Just the thing I needed to get me ready for 6 hours or so of neurosurgery. My surgery has been moved up to tomorrow, Monday, Feb 25th at 7:30 am. It is probably a good thing as I am having more pain and numbness in my left arm most likely caused by the growing tumor. I must admit I am quite anxious about what this surgery entails and am very glad to be getting it over with.

My neurosurgeon could not really give me a good idea of what to expect after the surgery as he really won't know all he has to do until he gets in there and sees where the tumor has grown. What I do know is that I will be in a rigid brace for three months and won't be fully healed for 9 months to a year. 

I am so glad that I was able to spend almost three weeks in Phoenix with dear friends playing golf and bridge, doing yoga, making fused glass, visiting museums and art galleries. It really kept me from thinking about what was ahead.

Another opportunity for accepting what is.....

Today's meeting with the neurosurgeon confirmed what I knew to be true. I need to have much more extensive surgery to remove all the cancerous tissue in the region of the C6 vertebra. Even though this news was expected, it is much more disheartening because I am feeling like my old self again....no more pain, very little residual neuropathy and lots of energy.  Ready to get back to golf, pickleball and life as I knew it. Now I face all the risks of surgery, the extensive pain of recovery and the possible lasting side effects.

What I know is that the surgery will be extensive. The surgeon will go in from the front and remove most of that part of C6 and dissect the tissue around the artery to the brain and  the nerve to my left arm. He will replace the missing tissue with mesh, cadaver bone, and a plate. Then he will turn me and go in from the back removing most of the left side of the vertebra and any remaining cancerous tissue. He will then fix everything in place with two screws.

If all goes well, I will be in a rigid cervical collar for three months with restrictions on lifting and activities. It will be six to 9 months of recovery before I should have about 90% of my range of motion. I will need to take a year off from golf, but if everything heals well and the tumor is gone, I should be back to golf and all other activities next Spring.

The surgery is scheduled for March 4th, but they are working on moving it up at least a week, maybe two. This means that I will be able to go to Arizona for two weeks to relax, soak up the sun and play a little golf. That should be really good for my psyche as I need a really need a boost at the moment.

Good News/Bad News...again

Really, Really...sometime I wonder how much more I can take! The news from last Friday’s CT/PET and MRI scans is both good and bad. The good news is that there are no new tumors detected. 

The bad news is that the neurosurgery did not remove all of the tumor in the C6 vertebrate in my neck and there is an area of new tumor activity in the part of the cervical bone that is left. This probably means that I will need much more extensive neurosurgery to try and remove all the tumor. My oncologist is conferring with my team of oncology surgeon, neurosurgeon, radiation oncologist, and immune therapy specialist to brainstorm what therapies we should pursue. 

I must admit that I was really disappointed with this news. I had my hopes up this time that I would be free of tumors for a while, but the news could have been much, much worse and for that I am grateful.