Congratulations on your anniversary! Relay for Life is a fun event! My wife and I have been participating for the last 4 years. I have been speaking for ACS since then too. Good luck on your events.
My Goodwill
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akristine posted an update
I received the best Hanukkah present today on the last day of the holiday: a clean mammogram and no testing for a year. That makes me 4 years XXX (No Evidence of Returning Disease) for liposarcoma and 1 year NED (No Evidence of Disease) for breast cancer. The whole foods plant-based vegan diet and exercise program is keeping me off chemo and on a healthy fight against cancer with my own natural immune system. Woohoo!
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akristine posted an update
I just passed two years NED and will participate in two Relays for Life in San Francisco: one in April and one in August. I'll probably be the keynote speaker again and this year, I'll do the Survivors Lap with walking poles instead of a cane or walker. Anyone who wants to join me is welcome.
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akristine posted an update
In essence, MRI stable. There are ongoing findings in the region of surgery / radiation, but it all looks stable and there are not definite characteristics to suggest active cancer.
Unfortunately, the only way to really know is to follow you over time. If the "mass" grows or changes to develop qualities suggestive of cancer - then Dr. Binkley and Fang would need to get involved again. If the MRI remains stable and you are not having new problems or issues, then the plan will be ongoing observation, with frequency of imaging to extend out over time.
As long as you are doing relatively well with no new problems potentially able to be related to tumor growth, then I would favor repeat imaging four months from your May exam - thus late September.
P.S. Do remember that you will need to do blood tests prior to the exam. Kidney function has to be checked prior to the MRI contrast material.
MRI LOW EXT W/O, W/ CONTRAST
** HISTORY **:
History of liposarcoma, status post resection and radiation
treatment.TECHNIQUE: Multiplanar, multisequence magnetic resonance imaging of the left hip was performed using the standard protocol before and after administration of 20 cc Magnevist intravenously.
** FINDINGS **:
Comparison is made with 02/08/2013 exam from outside open magnet.Again seen is 12 x 9 x 4 cm adipose mass deep to the gluteus
muscles. It has thin septations without enhancement. This adipose mass/ fatty infiltration extends into the sciatic notch. It also involves the inferior gamelius, obturator internus and piriformis muscles. There is patchy edema of all 3 gluteus muscles, obturator externus and internus muscles with minimal enhancement, likely reactive.BONES: There is no evidence of bone marrow involvement.
JOINT SPACE: No joint effusion is present.
** IMPRESSION **:
No significant interval change of 12 x 9 x 4 cm adipose mass deep to the left gluteus muscles. It has thin septations without
significant enhancement. Edema of left pelvic muscles with patchy enhancement as described above. This finding may represent reactive nature/ atrophy secondary to surgery and radiation therapy.So basically my butt's OK and any problems can be attributed to the surgery and resulting radiation. Yay!
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akristine posted an update
My wonderful oncologist knows I have multiple issues besides the liposarcoma: radiation cystitis, fatigue, etc. I can live with those minor problems but the back pain from a compressed disc, a bulging disc and a healed stress fracture coupled with degenerative osteoarthritis in my spine was almost unbearable. The osteoarthritis in my knees also causes problems when I walk. Two weeks ago, my oncologist sent me to the Pain Intervention Clinic where another wonderful doctor gave me an epidural. I can walk without pain in my back! I can bend over and tie my shoes. I can stand at the sink and wash dishes or cook. The knees still ache but I can stand tall, sit and stand repeatedly during services at my synagogue, and walk downhill from the bus stop (slowly). I make a lousy victim and most of my motivation has been fueled by anger: God and I have an agreement that I won't spend the rest of my life with this darn walker or resort to a motorized chair. There is not enough pain to keep me from doing what I need and want to do.
I hope all of you can find a way to bring your smile back and have some small successes that lead to bigger triumphs. Good luck!
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akristine posted an update
Have you seen the latest on treating cancer?
http://www.sfgate.com/business/article/Genomic-Health-Cancer-options-tailored-4021687.phpIt looks promising.
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akristine posted an update
Is anyone else doing a Relay for Life around the world? It would be nice to connect with you so we can share stories. If you haven't thought about participating, let me assure you that you will be treated like royalty and have a wonderful time.
2 Comments-
Genjen
over 8 years agoYes in June I did ours in Salinas CA and we raised over 630.000 this year our goal was 700.000 so we were close. ACS just sent me this site yesterday so I just joined, I'm glad to see a site like this because I can't get out much and miss going to my support group and so I'm hoping this will be a way I can keep getting support because I'm struggling emotionally right now, I miss people and I can't be around them due to my low white blood count. I notice you live not far so maybe we can email back and forth?
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akristine posted an update
I'll be at the Relay for Life on Crissy Field in San Francisco, CA this Saturday/Sunday, August 4-5. The other survivors and I will be walking the Survivors Lap and I hope to also walk the Caregivers lap that follows. In the evening, I will be lighting four luminaria that I purchased along with those purchased by family and friends in my name. If anyone will be in the area, I would love to meet you!
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akristine posted an update
When I tried to add JAJO25 to "People Most Like You", I received this message:
The change you wanted was rejected.
Maybe you tried to change something you didn't have access to.I'll try again later today.
Just thought you should know. -
akristine posted an update
Tonight, I will be addressing the Relay for Life Rally in San Francisco for the event to be held on August 4 at Chrissy Field. The organizers wanted a survivor to "rally the troops," so to speak, or at least the volunteers.
I've often wondered how great it would be to change the "Survivor" TV series to include cancer survivors. Think of it: survivors and their friends/families/caregivers are sent to Tahiti for a week of relaxation, snorkeling, scuba diving, enjoying good food and drink, and enjoying life. Ah!
3 Comments-
akristine
almost 9 years agoIt went very well and the volunteers liked my presentation. One of the organizers provided a football so I could illustrate the size of the tumor that was removed. They're terrific people and I look forward to seeing them again at the survivor gathering on April 21. By that time, I'll have the Survivor t-shirt from the April 14 Relay for Life. I'm so grateful to be well enough to be able to help them and return some of the blessings I've received from ACS.
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akristine posted an update
I know it's just my imagination but I feel like the radiated area is warm. First treatment lasted about a half hour while images were taken and I wasn't uncomfortable. Now I have some little target stickers on my fanny so the techs won't lose their place tomorrow. It's kind of cute that the machines have the names of national parks on them. I'm on Yosemite which just happens to be my favorite. No side effects yet but I am tired because I missed my nap. So far, so good.
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akristine posted an update
Had my CT simulation today and now have the three tattoos to guide future radiation beginning January 9. I have the ACS Personal Health Manager which will help me track all the experiences. Since I'm taking Coumadin because of the pulmonary emboli I had last month and will be taking that med for six months, I asked the nutritionist to help me with a vegetarian menu that will work for both a blood thinner and radiation side effects. It will be an adventure.
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akristine posted an update
Hi there. New to this community and just found out I will be starting 6-7 weeks of radiation before Chanukah/Christmas. At least I'll be alive for the holidays.
