akristine's Journey:

Patient: Sarcoma - Adult Soft Tissue Cancer > Liposarcoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: almost 6 years ago, Female, Age: 68, Stage II

  1. 1
    over 5 years ago
    akristine's Avatar

    Oh No

    On August 26, 2011, I went to my physical therapist to see if she could massage the knot just above my left buttock and perhaps the lower back where I was having some pain when I walked. I used a cane because of the osteoarthritis in both knees and it didn't make any difference whether the cane was in my left or right hand: still had pain. She took one look at the knot and told me it was too big for her to work on. She referred me to my primary care physician who sent me to a lab for an open MRI. On September 14, I met with a surgeon who told me I had a large, well-defined liposarcoma (the first time I heard the C word). To shorten the story, I had surgery on October 19 to remove a football-size tumor from my left buttock. After spending some time learning to use a walker in a skilled nursing facility, I was released on Halloween and went home to recover with the help of visiting nurses. It took a little while to sink in that I really have retriperitoneal liposarcoma cancer. Then I wanted to get started immediately getting rid of the remaining cancerous cells once the tumor was removed. On November 10, one of the visiting nurses noticed I was having trouble breathing and had chest pain. An ambulance took me to ER and the doctor found multiple pulmonary emboli. I was released on November 16 after six days on a Heparin drip and now take Coumadin for the next six months. Meanwhile, my surgeon assigned an oncologist who sent me to a radiation oncologist to begin daily Monday through Friday radiation on January 9 (for 6-7 weeks). I had the CT simulation yesterday and have three tattoos to line up the machine. Dealing with two major health issues has been a challenge and I'm fighting the depression. At least I can enjoy the holidays before the MRI on December 28 and the radiation next year.

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  2. 2
    over 5 years ago
    akristine's Avatar

    Surgery

    Procedure or Surgery

    Very large retriperitoneal liposarcoma removed and now awaiting radiation.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    over 5 years ago
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    External radiation

    Radiation

    The daily commute is a tough one since I don't have a car and the paratransit folks only honor the card inside the city limits of San Francisco. My treatments are at the Kaiser facility in South San Francisco which means I need to take a cab or bus to BART (the subway), take the subway to the South San Francisco station, and take the free shuttle (if it's running) or a cab which I pay for to the hospital. Then I reverse the process to return home. Loading and unloading the walker is a little rough but I can handle it.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    over 5 years ago
    akristine's Avatar

    Approved for Social Security Disability

    Celebration

    Finally! After two years of waiting, my attorney and I had a hearing this morning with the Adjudication Law Judge from Social Security. He approved my disability dating back to June 2010. I've been worried about an upcoming eviction because I couldn't pay rent for the last few months but I may have enough to cover it soon. Now I can take care of my health and finish the radiation treatments.

    3 Comments
  5. 5
    about 5 years ago
    akristine's Avatar

    Finished treatment

    Celebration

    Done. Done. Done. Radiation is done. Woohoo! All I have left is a small blistered area to care for; fatigue and diarrhea to manage. After many hugs and fond farewells from the techs, nurses, doctor and staff, I'm home. It's a wonderful day and I'm wishing all of you good health.

    2 Comments
  6. 6
    about 5 years ago
    akristine's Avatar

    Speaker at Relay for Life

    Celebration

    I was honored to be selected to speak at the Survivor gathering before the Survivor Lap at the Relay for Life on April 14 at the University of San Francisco. This will allow me to share a little of my story and experiences. I hope to meet some of you there if you live in the area and will be participating.

    2 Comments
  7. 7
    about 5 years ago
    akristine's Avatar

    First Relay for Life

    Celebration

    What an amazing experience! I was able to address all the participants and tell my story before the Survivors Lap at the Relay for Life on the campus of the University of San Francisco. We walked the Survivors Lap while the rest of the staff and teams applauded us all around the course. I've never been cheered for being alive. All the survivors were given t-shirts, medals, flowers, bath items, and food. The widower of one woman who lost her fight created earrings for all the women because he noticed the women enduring chemo had no hair and wore no jewelry. I have a beautiful pair of earrings to wear thanks to him. The survivors gathered around the table after our lap and we shared our stories. If you have the time and energy, find a Relay for Life near you and participate. It is a rewarding experience and makes you feel warm and fuzzy. I look forward to my next Relay on August 4-5 at Crissy Field in San Francisco.

    1 Comment
  8. 8
    about 5 years ago
    akristine's Avatar

    Lost loved one

    Loss

    I found out today that my dear friend Barbara lost her fight with non-Hodgkins B lymphoma that had metastasized to her brain. Radiation reduced the size of the tumor but that was all the medical community could do for her. Her husband and daughter are handling it as well as can be expected. At the next Relay for Life, her luminaria has been changed from "In support of" to "In memory of" and I will dedicate it to her.

    2 Comments
  9. 9
    about 5 years ago
    akristine's Avatar

    Decision Point

    I spoke with my gynecologist and since I'm at risk for pulmonary embolism after surgery, we decided not to remove the benign cyst on my left ovary followed by an oophorectomy. She said there was a very small chance of the liposarcoma traveling to my ovaries when/if it recurs--something that form of cancer tends to do. We'll monitor the area along with my oncologist and keep our fingers crossed she's right in her diagnosis.

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  10. 10
    almost 5 years ago
    akristine's Avatar

    Relay for Life

    Celebration

    It was a chilly but wonderful experience at my second Relay for Life. Since the location was at Crissy Field on San Francisco Bay, it was foggy and although we could see the Golden Gate Bridge, the tops of the towers disappeared in the fog. There were at least 50 survivors in the lap and caregivers followed with their banner. We had breakfast, chatted with each other and then some of us decorated our luminaria to be lit at sunset. We raised quite a bit for cancer research and had fun at the same time. I recommend Relay for anyone who is well enough to support and attend.

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  11. 11
    over 4 years ago
    akristine's Avatar

    Bladder problems

    Side Effects

    Cancer: the gift that keeps on giving. ;-) Yes, I'm being cynical because six months after radiation, I developed radiation cystitis. My urine ranges from a lovely shade of pink to the color of rose' wine. No other side effects to report and the urologist gave me some meds to reduce the urgency. Now I wait for this to pass and hope that it's soon.

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  12. 12
    over 4 years ago
    akristine's Avatar

    Cancer Free

    Celebration

    My urologist just informed me that the test results showed NO cancer cells in my bladder and the cystitis is caused by the radiation. It should diminish on its own.

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  13. 13
    over 4 years ago
    akristine's Avatar

    Birthday

    Celebration

    My 64th birthday will be Saturday November 3. You'll all be remembered in my prayers during shabbat service in the morning and Saturday evening, I will be singing sea chanteys on the Balclutha (19th century sailing ship) at the Hyde Street Pier in San Francisco. While I sip some hot cider, I'll be thinking of you and wishing you more birthdays.

    1 Comment
  14. 14
    over 4 years ago
    akristine's Avatar

    Pain

    Side Effects

    So my lower back was aching and I asked my oncologist what the problem could be. The three MRIs showed no cancer cells (according to two surgeons, the radiation oncologist and my oncologist). What they did show was scarring from the radiation, some deterioration of the spine, compressed or bulging discs, and a damaged sciatic nerve. Nothing is pressing against the pelvic notch but the pain is sometimes so bad, I'm glad to have the refrigerator on one side and the door on the opposite side of the doorway to brace myself when I hobble to the bathroom. I have pain pills that I only take as a last resort at night before going to bed. Naturally, the pills have the warning label about not operating heavy machinery while taking the drug. Drat. I was all set to fire up my forklift and get some pallets moved. Nothing can be done about the spinal deterioration nor the sciatic nerve damage from the radiation. However, I will be investigating bariatric surgery to lose some weight since I cannot exercise enough to burn calories. The weight loss will help alleviate the pain. The bladder cystitis is easing and should be gone soon. I'll add more as I know more.

    2 Comments
  15. 15
    about 4 years ago
    akristine's Avatar

    Celebration

    Since January 8, I have lost 42 pounds. My primary physician recommended an epidural in the pain intervention clinic and I am able to walk with a cane (and without it although I bring it for balance). No signs of returning cancer and I'm enjoying being on my feet again. I wish good health to all of you!

    0 Comments
  16. 16
    about 4 years ago
    akristine's Avatar

    From walker to cane to walking poles

    Milestones

    I finally made it! Yesterday at the Relay Rally for a Relay for Life in August, I was at the Sports Basement where I tried walking poles (or hiking poles or ski poles) again. Last year, I was able to stumble around the room. Today, I will test my endurance and walk up the hill to the bus stop. It feels wonderful to be able to walk almost normally again. I wish everyone could feel as happy and hopeful as I do. It took months but it's happening. Keep fighting!

    1 Comment
  17. 17
    almost 4 years ago
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    Relay for Life

    Milestones

    Will be the survivor speaker and survivor tent hostess for the Relay for Life in San Francisco tomorrow.

    1 Comment
  18. 18
    over 3 years ago
    akristine's Avatar

    Remission

    Celebration

    I received this today from the doctor covering for my oncologist. To: Adrienne Kristine From: MICHAEL XIANG LEE MD Received: 10/18/2013 7:45 PM PDT Dear Ms. Kristine, I am a colleague of Dr. Nelson's covering for her while she is on leave until the end of October. I just want to inform you that your recent MRI showed no change. I know Dr. Nelson has been following the abnormal finding now for over 1 year. It's been almost 1 year since you have seen her. Please contact our office if you would like to have a follow up with her. Please let me know if there is anything else we can help with. Sincerely, Michael Xiang Lee, MD, MPH Medical Oncology and Hematology It's not NED but close enough to celebrate, right!

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  19. 19
    over 2 years ago
    akristine's Avatar

    Cancer is back/Recurred

    Oh No

    My liposarcoma hasn't returned but after a routine mammogram two weeks ago, an ultrasound and biopsy, I now have ductal carcinoma in my right breast. It's small (1 cm), non-aggressive and can probably be removed through a lumpectomy but I will find out more from the surgeon on Thursday. Drat. At least is a new and different cancer to deal with.

    1 Comment
  20. 20
    about 2 years ago
    akristine's Avatar

    Bone strengthening drugs

    Drug or Chemo Therapy

    Now that I also have breast cancer, I've been given Arimidex for handling it instead of radiation after the lumpectomy. The problem is the first side effect is osteoporosis which I already have. Tomorrow, I'm going to have an infusion of Zometa to halt the damage. Both Arimidex and Zometa have the side effect of joint pain. I had cortisone shots in my knees on February 6 and had an epidural today on both sides of my back. The pain was worse than in the past but it remains to be seen whether it's caused by the osteoarthritis and disk damage or the side effect of the Arimidex. So I'll wait and see and hope for the best.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    3 Comments