Commonweal

I have been accepted to spend a week at Commonweal Retreat Center in Bolinas California,( http://www.commonweal.org/programs/cancer-help.html) founded by Jim Lerner and Rachel Naomi Remen (author of two wonderful books, Kitchen Table Wisdom and My Grandfather's Blessings). I will be with 8 other cancer patients for an intensive week of intentional healing. Should be interesting experience.

I was very interested in attending this program when I first got melanoma, but when Stef got sick as well, it never happened. I became reacquainted with the program last February right as I began IL-2 therapy. I thought that it might be something that I could really benefit from and so I applied. Over the last 10 years I have discovered much of what they address on my own but felt that there is much more that I can do for myself and for others with cancer. I am going with an open mind to see what I can learn.

The side effects from the radiation seem to be minimal, fatigue, some tingling and pain down my arm, and swelling and soreness in my neck. Very manageable with ibuprofen...hopefully this will be all.

So much to be thankful for!

I am so thankful for my wonderful family, all my amazing friends, and a cadre of talented doctors, nurses and integrative health professionals that have care for and supported me over the last year. Who would have guessed a year ago that I would feel so well and be able to actively participate in our family Thanksgiving!

I made it through the radiation this week but have had some side effects of nerve pain in my arm, swelling in the neck and fatigue, but nothing that I can't manage. I will be heading home tomorrow for a few days of R&R after all of the activity in Portland.

Wishing you and your families a very Happy Thanksgiving. I am so grateful to have all of your in my life.

Pema Chodron Primer

I wanted to share this website with all of you. It is a great summary of Pema's teachings that I have found so helpful over the last few years. I highly recommend reading the books that are highlighted in these excerpts. http://pemachodronfoundation.org/wp-content/uploads/2011/01/pemachodronprimer-shambhalasun.pdf

Simulation day at the oncologists

Not a pleasant experience. You lie on a very hard table and they place hot plastic mesh on your face, neck and shoulders and then mold it to your body and then cover the whole thing with cold, wet towels so that it cools faster. But let me tell you..it is very claustrophobic and can't cool fast enough. Then you stay in the mask unable to move while they do an CT scan and mark the mask. The process for my knee was faster and certainly not as bad. It will take a week for the computer and radiation oncologists to map the paths of radiation for my neck that will hit the tumor but miss my esophagus etc. I return for the actual radiation treatment the Tuesday and Wednesday before Thanksgiving. Hopefully

Made dinner for both families and then tried to help Lori with the kids while she made lunches and did garbage etc. Finny is at the stage where she cries when anyone holds her but her Mom and Dad so I ended up not being as much help as I wished.

Today I am going home for some R&R. I love being with the little ones but they certainly are exhausting.

Fun but exhausting!

Just had to share with everyone how much fun I am having taking care of my grandkids while Becca is working and Brian is in New York. I must a lot more stamina now as I have been taking care of both kids for most of the day. This morning Dash came over as well and we made green Playdoh while Alex sat in his bouncy chair and watched.

I did see the radiation oncologist on Tuesday. He said that we can do radiation to both tumors. He will give one large dose to the one on my neck and two smaller doses to my knee. This type of radiation, called stereotactic body radiation, requires a simulation appointment of 1 hour and a week for them to make the computer simulation and then two more appointments the following week for the treatment itself. I hope to have all of this done before the week of Thanksgiving so the worst of the side effects will be over by the time all of the Bloomfield arrive in Portland for Thanksgiving.

Catching up

Sorry to have been out of touch but there has not been much to report. I have just been waiting to hear from the oncologist about radiation treatment. I guess that I am having radiation as I have an appointment with the radiation oncologist tomorrow and will find out just what that entails. But the really good news is that my oncologist wants to wait for three months to do scans again to see the effect of the radiation and the IL-2 on my remaining tumors.

In the meantime, I am getting stronger day-by-day and enjoying whatever life has to offer me. Last weekend, I went to the coast with two friends (Phyl Lefohn and Carolyn Miller) who had attended the Pema Chodron retreat with me last October. We were going to participate in an online retreat with Pema. Technology issues (slow Internet connections and the snow storm in NY) kept us from seeing all the sessions. We did see 4 hours of the workshop from the second floor of the local pizza place where we were competing with big screen college football broadcasts. But not doing the whole workshop left time for long beach walks, meditations on the beach, and interesting discussions about how what we learned at last year's workshop had impacted our lives.

In addition to getting the radiation, I am spending the week helping out with both sets of grandchildren, and finalizing the remodeling plans for the apartment I bought so hopefully I can use it when I am in Portland starting in December.

Results of Today's Visit with the Oncologist

Well, the news is neither great nor terrible...it is probably good news, but I guess I am feeling disappointed because I had high expectations of being in remission since I have been feeling so well. The scans showed no change from the scans in July. The good news is that there are no new tumors and the two remaining are no larger than July. The not so good news is that the tumors remain active and the one in my neck is close to my spinal cord. So the oncologist says that he gets paid to worry and wants to see if the radiologist/oncologist can radiate that tumor again without damaging the spinal column. If so, I will have the radiation and then we will wait a while for scans. If not, I will have scans again in two months to see if there are any changes. I have to think that the IL-2 treatment did work to some extent since I have no new tumors and the existing ones are no bigger. Also, it may take my immune system longer to knock out the existing tumors and hopefully the will have shrunk on the next scans

So I continue to need your healing thoughts and prayers coming my way. Don't worry, I will get back to my positive frame a mind soon. Pema Chodron would say that I was clinging too much to one outcome and need to accept what is and find the positives in that.