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Albuquerque Cancer Family Retreat

In January of 2014 I had radiation treatment for breast cancer. Every day I would drive across town to MD Anderson Presbyterian for my treatment. As the treatment progressed, I was unable to attend my Tai Chi class. I still remember my wait time in my patient gown with fellow cancer patients with fondness. It was there I heard the personal stories of cancer and I finished my treatment with an even stronger conviction of the beauty of the human spirit.

Next I had the radiation treatment for my thyroid cancer. The diet, the thyrogen shots, the radioactive swallow, the isolation, the inflamed salivary glands. Now all done.

Next I signed up for The Family Retreat sponsored by the Cancer Services of New mexico. I received the application. My oncologist, Dr Bernard Agbemadzo, signed off on it. I mailed it in not expecting to be approved.  I was approved. I am in the second picture on their web home page.

The Family retreat is a three-day event full of information for those with cancer and their families. It is held twice a year Spring and Fall at the Albuquerque Marriott Pyramid North Hotel.  All meals, hotel rooms and events are free. It is truly a wonderful event. Visit their website to learn more. Cancer Services New Mexico web site

 

Sandy Ginsburg

Tiny, energetic. Warm eyes and welcoming smile. That is my first impression of Sandy Ginsburg.SANDY She is President of Cancer Support Now, a grass roots cancer survivor organization that believes no one has to go through cancer alone whether as a survivor or caregiver, whatever their needs may be. As CSN’s leader she lives this core belief every single day.

I met Sandy for a leisurely summer lunch at the Indigo Crow in Corrales. We see each other at board meetings and committee meetings. It was nice to have her all to myself with no distractions.

A surprise to me, Sandy was a reporter for many years. She worked for the National Association of State Mental Health Program Directors, based in Washington, D C. She also worked for the Institute for Social Research which is the world’s largest academic social science survey and research organization at the University of Michigan in Ann Arbor.

In New Mexico, she worked for Dr. Hal Rhodes, chairman of the Political Science Department at UNM. She was involved in establishing the New Mexico Coalition for Literacy with First Lady Kathy Carruthers. She has managed the NM Arts and Crafts Fair and has been involved in the Wheels Museum.

She is married to Ron. Her daughter Sarah is a lawyer and her grandson, Mark, is well loved.

Sandy is no stranger to cancer. She was first treated for breast cancer when she was 47. She completed her treatment and thought she was done.   Breast cancer appeared in her other breast at age 50. Realizing that cancer wasn’t just going away after treatment, she pursued all the things we do when we are trying to optimize our health. Three years later another cancer appeared in a lymph node that was missed during her second cancer treatment. At this juncture, she came to the conclusion that all the things she did to help her body stay healthy were not working.  She changed gears. Determined to enjoy her life, she stopped pushing, lives normally, and is happy.

She was treated for a brain tumor in 2002.  Cured, she says. She is currently being treated for a ten-year-old Leukemia(CML) and for a three-year-old bladder cancer. Sandy amazes me.  She is the leader of our group and she is always there. Strong, smiling, good natured. She is a role model for me. She is a role model for all of us who have crossed paths with cancer.

Sandy joined People Living Through Cancer as a committee member. PLTC was founded by Catherine Logan-Carrillo as a local cancer support community. Seeing the value in PLTC, Sandy became deeply involved as a board member and then as president. When Catherine retired from PLTC and later started Cancer Support Now, Sandy joined her. Sandy is current president.

She had said her strengths were in networking, bringing people together and organization. Having seen her in action for the last year, she is right.

Sandy attends many local events and keeps connected with her many contacts.  Frequently, at committee meetings she will include a new person with interesting insights that will contribute helpful information.

Yesterday’s board meeting is characteristic of Sandy’s organization. We had a written agenda.  Members present have assignments or are on active committees.  Each was asked for progress. Meetings are informal. There is ample time for discussion. Still the agenda is covered and at the end of the meeting we know where our organization stands and what we need to do next. She’s an excellent community leader.

I asked her why she gives so much of her time to the community. She said her family has a history of community involvement and it was automatic that she should too. Simple as that.

Eleanor Schick

 

Eleanor

Eleanor

I instantly liked Eleanor when I met her. She pays attention to you when you are speaking to her. She cares,  is thoughtful and helpful.

She manages the Cancer Support Now Helpline which is available seven days a week for those in the community who need answers to questions about their or a family member’s cancer.   She is available 9 am to 9 pm 7 days a week by calling: 505-255-0405 or 855-955-3500. This is what she told me about her work with the helpline:

“I refer callers, whether caregivers or patient/survivors to groups, or to one on one support or when neither seems appropriate I provide support to them in the moment, and on an ongoing basis, and whenever they need, sometimes for years.

Though cancer issues are what prompts someone  to make the first call, supporting them becomes whatever they need…whether its referrals to other providers, or ongoing emotional support…about cancer but also about anything.

There are some people who need support but ask me to please call them regularly, rather than initiating the call themselves, and I’m happy to do that.

I support people on hospice and people who have a loved one on hospice, and I continue to support people who have lost a loved one to cancer for as long as they need, sometimes years.

Cancer often brings up issues of PTSD because new trauma tends to reawaken old trauma. I have experience with PTSD and often support people who are working through it. I have referred some with PTSD to counseling, though I continue to support them as well.

I love this work.”

It is easy to see that she does love her work.  Beyond her work at the Helpline she has so much to her credit.

  • She has written and illustrated over 30 published children’s books. When Mama Wore A Hat  was distributed free to cancer treatment centers across the country by Wyeth Pharmaceuticals. It is now distributed free by Cancer Services of New Mexico in every child’s gift bag made available to all adults treated with cancer who have children in their lives.
  • She was a professional dancer in a NYC company.
  • She loves to write. She believes,”writing allows us to follow a train of thought to completion in a way that expresses an inner wisdom that isn’t available in normal conversation.”
  • For 10 years, she was a Writer in Residence in the Rio Grande Writing Project at UNM, a local site of the National Writing Project.
  • She has been a community support for many writers. She has given author talks in Children Literature classes at UNM.  She has done the same in many elementary schools around the city.
  • Her writing experience spawned the idea of writing support groups for cancer survivors and for caregivers. She and Anjie Cureton developed the two ongoing writing support groups  at UNM Cancer Center. They each meet once a week: Journaling Support Group,(caregiver, 255-0405) and Survivors Writing Together (255-0405).

Eleanor wisdom:

“I believe that cancer, even with its traumas and losses, gives us each the chance to connect with a higher wisdom in ourselves if we do the work, and if we reach out for support in it.”

It is easy to see why I like Eleanor so very much.

Childhood leukemia success, a bit of history

Freireich and Frei became unlikely partners when they went to work at the National Cancer Institute in 1955.  They were opposites in personality, but they were miracle workers on the leukemia ward. At that time the death rate for childhood leukemia was 90%. 

Children were bleeding to death.  Freireich and Frei were first to do something about the falling levels of platelets in these children. Against resistance, when the NCI’s blood bank refused to give them blood for the necessary transfusions, they sought blood elsewhere. They got the blood, transfused the children and the results were notable.

Freireich and Frei  decided that using multiple chemotherapy medications would be more effective than one medication at a time.  Again, they were seriously accused of being cruel to children. They went ahead with their idea. They started using a cocktail of four medications. Children began to survive.

Unfortunately, eventually the cancer came back. Next Freireich and Frei decided that they needed to give their chemo cocktail for an entire year. Even though they had been so successful with their innovations, the medical community still renounced the idea. They went ahead with their year long therapy. Children began surviving.

In 1965 Freireich and Frei published Progress and Perspectives in the Chemotherapy of Acute Leukemia.  Today the survival rate of childhood leukemia is 90%. 

These were two doctors who were passionate about their work and persevered through great criticism and risk to their careers to make incredible changes in the care of children with leukemia. I say thank you. I also say thank you to those doctors, nurses and researchers who today are investing their lives work  to find better ways for us to survive and thrive illnesses such as cancer.

 

 

 

Conversation for NM Cancer Girls in July

        Admitting that we  have thoughts about  death when we are diagnosed with cancer,          is both a gift for ourselves and a gift from our family.

Once cancer strikes we are  at risk.

For many our cancers can be cured.                                                                                                     For others, cancer hangs out in our bodies until it becomes center stage again.                             For some cancer  becomes a losing battle.

When the battle is finally lost, I have seen angry women become peaceful. Not having to constantly strive, they can rest. They can start thinking about their end. They might start to plan. They are relieved they no longer have to fight. They were exhausted. Now they can relax.

As our cancer progresses, as we get another cancer, death becomes a topic for discussion. We want to know more. The event below is a well received discussion in Albuquerque. Join us.

COMPASSION & CHOICES

Having the Conversation:
Practical Tips for Effective Advance Care Planning

Revathi A-Davidson &  Jean Anderson

 

Sunday, July 12

1:30 – 3:00 p.m.

American Lung Association offices

 5911 Jefferson St. NE.

Sponsored by

cancer support now logo

Cancer Support Now Conference time

cancer support now logoI was selling raffle tickets for our chocolate gift basket♥. Guests were choosing items from the breakfast table. Others were meeting old friends; starting new friendships registration packets in hand.  Sandy♥ was on the stage ready to welcome everyone. Dr Michael Linver♥ would be arriving soon for the keynote.

I stood there talking with a woman who has been recently diagnosed with breast cancer. She had the surgery a few weeks ago and would be having radiation next. Her experience had been such a whirlwind that she was still absorbing what had happened to her. She was looking for answers. And she wanted to feel that she was not the only one. She was tentative. But she was here. She was me one year ago.

One year ago I had completed breast cancer radiation three months before  and thyroid cancer radiation one month before. The conference was new to me. It was a port in the storm.  Kind faces not in scrubs. Welcoming. Informative. A chance to speak out. A chance to hear and be heard. I was heard.

I was welcomed into the group. This year I am on the board of Cancer Support Now♥  I was on the planning committee for the 4th Annual Long-Term Effects of Cancer Survivorship Conference. I am fortunate to be a part of something so valuable to the individual with cancer.

I feel the real value of our conference is to the individual. We are a port in the storm with open arms and friendship and information.

After Dr Linver’s excellent talk we moved to our breakout sessions. Mine was the Fatigue/Sleep Issues. Popular subject.  Catherine Offutt, a woman who radiates positive energy, and Patricia Torn, an excellent speaker,  led us with an interactive, fun and funny experience. The best formula for learning.

Jason’s Deli Box lunches and conversation were next. Upstairs the ABQ School of Massage Therapy and Health Sciences♥ were giving free chair massages. Not a bad way to spend the day.

A rehabilitation panel discussion was lively. George Fraser PT, co-owner of Fifty ‘n Fit♥ stole the show with information about osteoporosis, fractures and exercise post treatment.

My next breakout session was titled End of Life Planning and Support. It did not deliver as titled. I was disappointed as I needed help in this area. It was a philosophy based discussion. Interesting. However, I think most of us already had our philosophy pinned down but not our end of life plan.

What was memorable for me was the Closing. We gathered to discuss what we liked, what we would want next year. Everyone showed up. Last year there were some and this year there were many. Our attendees took ownership of the conference. It was the best thing that could have happened. They wanted to be heard. Led by the excellent Patricia Torn, they were heard.  We went home happy.

 

Notes♥

ChocGlitz&Cream is owned by Celeste Davis and is located not far from Rust Memorial on Unser. Excellent chocolate.

Sandy Ginsburg, president Cancer Support Now. Excellent role model for us in the cancer community.

Michael Linver, MD, FACR, F.S.B.I., international lecturer on mammography, excellent speaker. We are lucky to have Dr. Linver in our community.

Cancer Support Now is the sponsor of The 4th Annual Long-Term Effects of Cancer Survivorship Conference

ABQ School of Massage Therapy and Health Sciences is owned by Dawn Saunders. She is amazing. I have had my best massages at her school.

Fifty ‘n Fit is owned by George Fraser and his wife.

Cancer Support Now

Go to the Cancer Support Now website and check the Spring Conference and a wonderful local cancer support organization right here in ABQ.                      http://cancersupportnow.org/

 Announcing

 Fourth  Annual Long Term Effects of Cancer Survivorship Conference

March 28, 2015   8:30 am to 4:30 pm at
Central United Methodist Church   in Albuquerque

The Conference includes 4 breakout sessions  held twice, morning & afternoon

1. Fatigue/Sleep Issues
2. Lymphedema
3. Creative Movement/Visual Art an interactive, experiential session
4. End of Life Planning and Support

Keynote sessions:

The Morning  keynote speaker is  Michael N. Linver, MD, FACR.
Dr. Linver is a busy
lecturer on mammography, having presented over 900 talks throughout
the United States and in over 20 countries around the world.
The Lunch keynote session is a panel of experts on rehabilitation topics of concern to post-treatment survivors and their caregivers.
Location: Central United Methodist Church,
201 University Blvd. NE,
Albuquerque, NM 1 block north of Central
For more information call
505.307.3414 ore-mail ptorn@comcast.net
Registration is required & opens mid-February

 

A marked woman

Radiation treatment follows certain protocols. My treatment is at the MD Anderson satellite here in Albuquerque. After meeting with the radiation oncologist, Dr. G, I have my simulation appointment. This includes a CT scan, painting on the bull’s eyes with magic marker and tape, measuring for an arm mold for placement.

My breast is bare to three people. Since it has already had a mammogram, an ultrasound, a stereotactic core biopsy, wire placement and surgery, it is beginning to feel like community property and is no longer shy. Now it has war paint so is feeling pretty bold.bull's eye

Next the experts will do their calculations, the mold will be made and I will be ready to go with the three week plan plus a extra week to zap the surgical site. This means treatments five days a week and with the extra week, it will be four weeks or twenty treatments.

My choices were the standard six week plan, the three week plan at double dose or the one border markerweek plan that includes inserting a catheter into the breast by the surgeon( imagine the arrow through the head in the really old movies). Radiation seeds will be placed in the catheter twice a day for five days. This was not for me. I did meet an 83 year old woman who was fine. She said it was uncomfortable but she was glad to get it over with.

MD Anderson has Kurig coffee so they get my vote. I always have a cup. It insures staying awake on my drive home.

Treatment is quick. I have number 12 tomorrow. I listen to favorite music as I take my Mini  on its little road trip. Arrive, show my cancer card to reception, check on the lonely fat goldfish in its big tank, make my coffee. Next is patient changing, coed with private stalls for changing into gowns. Waits are short. A good place to compare notes with other patients.

Staff are always friendly and supportive. They take my card. I lay on the table, arm up in the mold, breast bare, bull’s eyes clear. Staff leaves, zap one side(this side has a little sigh in the machine), machine rotates over me, zaps the other side(no sigh). Done. 5 minutes?

My card is next to my coffee and my locker key which is attached to a miniature tennis shoe. I change. Back in the car and home to rest.

I had a rocky start to treatment in that I was trying to do to many other things during treatment. I was extremely tired and discouraged.

The following routine works well for me. I have much more energy on weekends and feel good. I wake, make coffee and journal in my favorite spot(this is leisurely). Shower and dress routine. To Defined Fitness for Tai Chi, M-W-F. or silver sneakers classic workout( a good thing)on T-T. Then home for lunch and a rest. Drive to treatment. Home. Rest. I’m good!

Remember I am also dealing with severe RA and an unfinished thyroid cancer treatment. I think most of us have those complicating extras.

The exercise is guaranteed to cut the fatigue, a major side effect of radiation. It makes me feel better.

My skin seems to be doing well. Some get painful redness like a bad sunburn. I am fortunate Aloe skin Gel so far. A dear client and friend, Julie sent me this Gel. It is excellent and helps me. I put it on when I wake up. Shower it off for treatment. Put it back on when I get home.

Tuesdays I see Dr G. Thursdays, x ray day. This Tuesday I will have another CT scan for machine placement for the surgical site zap week.

Radiation treatment is a good time to take care of your body. Mine appreciates it. My whole body had been through a lot of stuff. There is more to come. It is a good time for love and respect to yourself as it’s your own body that gets you through this. I have a great respect for mine.

Presbyterian Cancer Education Series 6 week workshop

Workshops

 

Silver Linings Survivorship Services: bring out the best you through exercise

Funded by Presbyterian Healthcare Foundation

Presbyterian Kaseman Hospital, 8300 Constitution Ave NE, ABQ, NM 87110   www.phs.org

Six week program, 2 hours.

All sessions include stretching and journaling. Each week is themed with an expert speaker.

Intro, lymphedema, fatigue and activities of daily living, nutrition and dietary considerations, peripheral neuropathy and cognitive impairment, long term side effects and exercise.

Excellent program. Informative and helpful. Well worth it. We all agreed that we learned a lot.

Gretl Berneart OTR/L, CLT-LANA                           Ada Portman, MPT, CLT                  Ann Mustoe, RN ONS

Jan Esparza, RD                  Monica Bartley, Exercise Specialist

I understand that this program will be repeated.  Contact 505-559-8761 to find out more about the workshop