Six weeks post surgery

It has been a busy holiday season with socials and parties in both Corvallis and Portland. I have probably been doing too much. (such as making 80+ blintzes for our wonderful family Hanukkah celebration) As a result, I am tiring quite easily and sleeping a lot. Although the discomfort and pain in the muscles in my back is better, it often flares up if I do too much and I have numbness in my left hand and neuropathy in the fingers.

I saw the neurologist today and he said that given the type of surgery that I underwent, he is very pleased with the progress I am making. He put me back on neurontin for the neuropathy and nerve pain and recommended light massage and soaking in a hot tub. (He says pamper yourself a bit!) He still wants me to limit my activity to walking and only putting and chipping for golf. (Also, very careful interaction with the grandchildren!) It is evident that he expects the recovery to take 3 months or more and that I may always have some residual nerve damage. I will have scans at 3 months and he and the oncologist will reassess whether I will need further treatment or surgery.

Wishing you and your family days filled with good food and fellowship and moments of wonder and reflection.

Continued Progress

Just realized that it has been three weeks since I last updated the blog. I am improving but more slowly than I would like. The muscles in my neck are really protesting to having to support my head without a good portion of the C6 vertebra. As a result I have a lot of pain and discomfort from muscle strain and spasms. I still need to be horizontal for periods of the day to give those muscles a break.

That being said. My incision has healed nicely and I have a rather large indent at the base of my neck where they removed part of the vertebra. I am trying to get out and walk or ride the stationary bike every day to get some of my stamina back.

I had a wonderful time at the beach with family over Thanksgiving. We had 10 for dinner and the weather treated us to everything from warm sunshine (walked 3 miles on the beach) to heavy rain and high winds. Typical Oregon coast in the winter.

I am working very hard to appreciate each moment that I am given. A friend sent me this link which is a lovely reminder of how we should live each day.

https://www.youtube.com/watch_popup?feature=player_embedded&v=nj2ofrX7jAk

Took a leap forward

I am happy to report that at 10 days out I am feeling much better. Am on a homeopathic medicine for muscle spasms that seems to be working during the day so that I can be up much more without pain. I seem to have more energy each day. 

My apartment at Willamette View certainly is a good place to recover from surgery. All my meals are prepared for me and I can eat in my apartment or the dining room depending upon how I am feeling. I have a lovely retired nurse who looks in on me every day and checks out how my incision is healing. There are lots of activities going on...I have listened to a jazz trio concert, seen an excellent African film at the foreign film night and even played some bridge. The weather this week has been lovely so I have been getting out for walks. Discovered a bike path nearby that leads in a mile to a little shopping area with a wonderful little coffee shop. So I have walked there twice for a coffee and rest before heading back.

I see the doctor on Tuesday to have the staples taken out and to make certain everything is healing. Then I will return to Corvallis and go almost directly to the coast for Thanksgiving with my sister and Becca and family. 

Knew it couldn't last...

Well, here we are on day 7. I have been coming along pretty well and knew that recovery usually isn't linear. Today I took a few steps backward with lots of pain and discomfort. Spent a good deal of the day on the bed lying flat. Pretty boring as there is not much you can do from that position. Most of you know that I am not very good at staying quiet. I am catching up on Podcasts. I brought a few books to read but it is difficult to hold them over my head. If I had known, I would have gotten some books on tape and put them on my IPhone. Having Becca's in laws for dinner tonight so that should cheer me up

Post Surgery- Day 5

I am steadily getting a little better and a little stronger with each day. The pain comes and goes but I am able to control it with Tylemol. I can stand a little pain just to get off the narcotics which really make me crazy. Had a bit of a scare with the muscle relaxant that I need to take for the bad muscle spasms. The prescription said take one to two pills every 9 hours. I tried one and was nauseous and couldn't stand after about 15 minutes. Had to sleep the effects off. So I now take only 1/2 and at bedtime so I can sleep.

I have moved over to my apartment here at Willamette View so that Becca and family can go to the coast.. Everyone here is so helpful. I have a frig full of food and lots of offers to help. I can be upright for a couple of hours but then need to lie flat to get the pressure off my neck.

I will spend the next two weeks here recuperating. I will have the staples taken out right before Thanksgiving and then the whole family..Sue included plans to go to the coast for the Holiday.

We couldn't have hoped for a better out come from the surgery. Hopefully the scans in Feb. will show the tumor gone and my neck will remain stable so that I don't have to have a fusion at a later date.

Back up at em!

Becca's Message on Nov 6

As usual, you can't keep Mom down for long. 

As the surgeon had predicted his removing the tumor completely eased the shooting pain and numbness that had been going down her arm. And after 24 of recovery, the only thing left that hurts is the muscles in her neck which were 'fileted' and moved around a bunch to access the tumor. Wearing a soft collar makes a huge difference. With it she feels almost normal.

The PT guy came by to check her out and teach her some really helpful ways to support her neck while transitioning between lying down/sitting up and to check out how steady she was/whether she could handle stairs. She went down to the little rehab room and rocked the tests so he gave the thumbs up. The PA and surgeon stopped by and were pleased but decided that they'd prefer she spend the night one more time and then she'd be set to go in the morning. 

But right now she's up sitting in the chair in her room and we'll go for a walk in a bit.

So pretty much as far as we can tell, everything went as well as it could have and Mom's looking forward to regaining her strength and healing. She'll be back at my place tomorrow and then will move on to Willamette View for 2 weeks towards the end of the week. 

Thanks again to all for your good wishes before and during. I've been sharing the messages with her and it really brightens her day.

Becca

Surgery Went Well

Note from Becca on Nov 5, 2012

Hi all-

Becca reporting from the hospital. Mom's surgery took about 3.5 hours and went really well. The surgeon said that he felt really good about how much of the tumor he was able to excise and expected that all of the pressure on her spinal cord and nerves should be relieved. Depending on how she feels and how well she's able to get the pain under control (because many have warned us that this will be a painful surgical recovery) she can go home tomorrow. 

Anyway, she's up in her room and a little woozy from pain meds but otherwise is doing pretty well...

Thanks all for your well wishes and positive energy and good thoughts for Mom. We truly believe it makes a difference.

Surgery again.....UGH!!

Since my wonderful golf trip to Eastern Washington, I have been busy modeling in a cancer fund raisier, meeting with the neurologist about my upcoming surgery and visiting my son and family in Washington DC.

I wore dressy cocktail dresses and lots of sparkly jewelry. I haven't looked this good in years. My handsome escort is the husband of a dear friend of mine. I was first down the runway in my gorgeous blue number and really hammed it up. It was a delightful evening and raised $140,000 for the cancer mentoring program in town.

With my neurosurgery scheduled for Nov 5, I was able to reschedule my visit with Jon and family and spent a beautiful sunny week with them walking all over the capital, visiting with nieces and their families, visiting the fabulous science museum in Baltimore and having a day with the two couples we had such fun with on the Russia trip, and just enjoying being with Dash and Finley, my adorable grandchildren. I returned home extremely tired just before Sandy hit. It was a great way to absorb their positive energy and not think about the pain I was in.

The pre-op visit with the neurologist made me a little more optimistic about this surgery. Although he will have to remove a good part of one side of my C6 vertebra and work around the spinal column and vertebral artery, he is not planning on having to do a fusion at this time. If all goes well, my activities will be restricted for about 6 weeks. But hopefully I will be out of pain and have a full range of motion and be able to go back to golf and pickleball.

BUT I will need all of your healing blue energy surrounding me and the neurosurgeon on Monday, Nov 5th as we proceed with yet another surgery. (My body is going to look like an op-art painting of scars!!)

Wonderful Week in Western Washington

This last week was just what the doctor ordered for my psyche. The neck and arm were painful but I just used the advice from Pema to move toward the pain.... I spent a week of gorgeous fall days with three friends, playing golf, tasting wine, eating yummy food and laughing until our sides hurt. Now I hope to squeeze in a week trip to Washington, DC to join Jon and family before the surgery on my neck to remove the tumor from my C6 vertebra on November 5th. I am trying not to worry about what the outcomes of the surgery may be as the neurosurgeon won't really know how much he will have to remove until he gets in there. But I remain optimistic about the outcome.

How to handle bad news after so much hope

I don't think that anyone who hasn't walked this journey can understand how depressing it is to learn that cancer you thought was in remission has returned aggressively. I was feeling so strong and being able to play golf and pickleball very well, but small nagging pain over my shoulder and down my arm became increasing more persistent and painful as the days progressed. My oncologist talked with a neurosurgeon and he ordered more MRIs and X-rays. They showed that the tumor on C6 was growing and pressing on the nerves that go down my left arm. The neurosurgeon advised that there was no choice but surgery to try to get the tumor out as soon as possible before it begins pressing on the spinal column.

I was so depressed when I heard the news, but have pulled myself together and have a plan which helps in making myself be in the moment rather than worrying about the future. For now I am dealing with constant pain and the hopes that I can visit Jon, Lori and the kids in Washington DC before I head to Portland for the surgery.

Summer was a real high

I didn't realize that I hadn't put anything here since June. I had an amazing summer and am so grateful for that. I played a lot of golf. I seem to have lost a lot of my game during my year of IL-2 therapy but still could enjoy being out on a beautiful day with friends on the golf course. I joined a new team to play in the Corvallis Women's Best ball tournament and we ended up third out of 40 teams...lots of fun. Lynda Warren and I left the day after the tournament for a cruise from Moscow to St. Petersburg. It was a wonderful trip: great weather, amazing group, new friends, informative Russian tour guides, and lots of amazing places to visit and photograph.

I got home with two days to try to get over jet lag and do my laundry and headed to Palo Alto to my nieces wedding. It was such a lovely affair...just the wedding they wanted...in a redwood grove with a small group of family and friends...camping out and barbecuing food and just enjoying each others company.

Returned to Portland to have PET/CT scans. The great news was that they showed no new tumors... the disquieting news was that the uptake in my C6 vertebra was still there. I was overjoyed at the first news and didn't think too much about the second. I allowed myself to get hopeful that I might be one of the small percent of people who respond to IL-2 and go into complete remission. 

Happy Summer

Things are going very well for me and I have been very busy...almost too busy and that is the reason behind the scarcity of posts. But the treatment that I had last year has been in the news in the last month with the publication of an article about the results of the Phase I trial  in the journal Science Translational Medicine.  This treatment really holds promise for stage 4 melanoma patients, especially young ones who can withstand the difficult treatment. Stereotactic body radiation (which targets tumors without irradiating healthy tissue) is given three days before the start of IL-2. It increased the response rate from 10 to 15% to over 70%!  Randomized Phase II trials are going on right now with a larger group of patients. I was so fortunate to have been in the right place at the right time to be given this treatment without qualifying for the trial. I am considered in partial remission and if my scans in August are clear I will be considered to be in complete remission. I will keep you posted.

(The photo is of a lovely sunset from my window of my Willamette View apartment in Portland)

Joyous

This photo is one of joy and it is what I feel now that the radiation oncologist has looked at my scans very carefully and has confirmed that nothing remains of the tumor in my neck and there are no new tumors in my spine or brain. We will do a pet scan in August to see if there are new tumors in any other part of my body or if my remission continues.

     I must admit that with this news, I am having to adjust my way of thinking. Over the last four years I have worked very hard to live in the moment and not think about or plan much into the future, but now I may have more of a future than I thought. I still want to work very hard at not filling every moment with activities, but living at a more mindful pace. This has not been my normal way of operating in the world and I will be interested in how well I succeed. You all have permission to remind me of that goal.....

WONDERFUL, WONDERFUL!!!

Best news in 4 years! Initial readings of brain and spinal MRIs are normal. If the radiation oncologist confirms this, I will be considered in remission and not have to have scans again until August.

Spring is Here!!

Much news! I am home from a wonderful trip to Spain. I spent two weeks with Becca's Danish parents in Estepona, a resort town on the southwestern coast of Spain. We played a lot of golf and went sightseeing to the towns of Ronda, Cordoba, and Grenada.

I came home and stayed in Portland to have my stitches out (the incision is healing nicely) and to celebrate Kai's third birthday at a Sushi restaurant (her request).

I caught a nasty bronchitis on the 27 hour trip home and it seems that this bug hangs on for three to four weeks so I am taking it easy and hope that Spring will finally come to Oregon so that I can get back out on the golf course.

I have an appointment in May for an MRI and visit with my oncologist to see what the status is of the remaining tumor in my neck. I am hopeful that it is shrinking and that I will soon be in full remission. Keep that thought in your healing wishes and prayers.

Surprise Surgery

Last Thursday I went to see my surgeon to set up the removal of the tumors when I return from Spain. He checked my scans, palpitated the the tumors and said "Let's take these out today." I was a bit taken aback but only agreed when he guaranteed that I would be able to play golf in Spain. The only thing that he said that I couldn't do was swim. So he took them out. I did have to be much more active over the weekend than I would have wanted with my sister Ann and her husband visiting from San Diego and a photo shoot with my four grandchildren.

The interesting thing that I learned from him yesterday is that the pathology report showed that the tumors were melanoma but half of the tissue was dead. He was optimistic that it meant that the IL-2 was doing its job and that is a very hopeful thought.....

Not the best news, but good enough

I know that you, my readers, have not heard from me in while, but I have really been enjoying my strength and good health by being with my four grandchidren as much as possible, traveling to Arizona and next to Spain, playing golf, bridge and pickleball with lots of time left for walks with Sophie and good food and conversation with many friends.

However, in January I started feeling two new tumors near the site of one of my original big tumors on my hip which we thought had been detroyed by IL-2 and radiation. Scans and a visit with my oncologist yesterday confirmed these two new tumors and the disturbing evidence that the tumor in my neck looked not to have been affected by the IL-s or the high dose of radiation in November. But the good news is that the cervical tumor is no bigger than it was on the last scans.

What are the next steps? We are going to keep a watchful eye on the cervical tumor with an MRI in two months. The two subcutaneous tumors will be removed with surgery in April.

So, you see that I am still in need of your supportive hands and healing thoughts. When you think of it send them my way.

Watch out for pain medicines

Just a note of caution about the class of oxycodone drugs that are so readily prescribed after surgery. The side effects can be life threatening. I just took care of a friend who had back surgery and they gave her a huge supply of Percoset (Tylenol and oxycodone) to deal with the pain. The advice was to take it regularly to keep ahead of the pain. So she did and also followed the protocol to prevent the side effects. But she (and now I hear lots of stories of others) suffered severe and potentially life-threatening side effects of intestinal blockage and then hemorrhaging, and mental disorientation and hallucinations. Luckily she is now recovering from what is turning out to be successful back surgery. So if you must take these painkillers, get yourself off of them as soon as possible and make certain that you have a support system in place if you do suffer the side effects.

Happy New Year

What better way to bring in the New Year than drinking champagne with good friends, watching fireworks, and driving a golf ball off the 10th tee (a yearly tradition at our country club)!

I spent some time today reading my posts of the last year and frankly am totally amazed that I made it to January 2012! Not only made it, but I am feeling better than I have in three or four years. I could not have done it without the love and healing care of family, friends, and my doctors and nurses at Providence Cancer Center. I am extremely grateful to all of you.

I am beginning 2012 with renewed hope that my good health will continue and am looking forward to a year of travel, golf, and spending more time in Portland enjoying time with my grandchildren.

My next scans are at the end of February so I don't expect to be posting as often. So you devoted readers only need to check every several weeks.

I wish for you all a very happy and healthy 2012.