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Aug 16, 2018 · Diagnosed with sarcoma? Let's share in Cancer

Pain is such a personal struggle. I think it is important to trust yourself AND be open to new strategies. Not an easy balance to find. But little about this experience is easy, is it? You are listening to options and I trust you to decide what is best for you. Accupuncture was very helpful to me in the past and I would not hesitate to return if it feels right again. It is not helpful for everyone but it is not dangerous either so, worth a try?
It is rare indeed to talk to a person with cancer who is not overwhelmed with FEAR at least part of the time. I know I was driven to complete distraction! Not knowing was the hardest thing for me. Knowing what I had was devastating but, strange as it sounds, I got used to the idea. Okay, it took months, but I got there. I've had a recurrence and the data is not encouraging. But I feel okay most of the time, have a few knits that allow for me to go up and down the #50 that I keep gaining and losing, and am finding joy and purpose most days though I have had to stop working and close my business. And I haven't been in-patient with complications in 2 chemo cycles (my personal record)!
You haven't had a chance to "know" so you can get used to anything. I believe you will get some answers at Mayo. They are so well-respected around the world. Then you too will be able to start to adapt to whatever you learn. There is certainly grief with a cancer diagnosis but you can do that, too, IF you have to do so. If not, YAY! Then you still have to find pain control strategies right for you.
During one of my hospitalizations this year, I whined to the attending that, for me, chemo was a full time job. She replied that she told sarcoma patients that all the time! It wasn't good news, but it was normalizing. Hopefully, talking on this site is also normalizing for you; it has been for me and I feel understood by others who have "been there". I pray you learn more very soon.

Aug 16, 2018 · Diagnosed with sarcoma? Let's share in Cancer

Hi, Valerie. I was diagnosed with a uterine leiomyosarcoma with extension into the colon in February. I have found pain is very personal. Things that have helped me include traditional helps for relaxation of the whole body like massage from a therapist skilled in treating people with serious medical problems, hot baths, imagery and prayer, etc. What has helped me most is craniosacral therapy. I receive it from a physical therapist, therefore it has been covered by insurance. Craniosacral therapy may be learned by any professional who has a license allowing them to touch people therapeutically and that includes pysicians (especially DOs), nurses, chiropractors, massage therapists. There are probably more disciplines and it varies some by state.

Jun 3, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Thank you, Allison. Your descriptions are helpful to me. I am not as articulate about emotions so sometimes you help me conceptualize my feelings that I could not understand in myself. Yes, I feel all those things at once. Cancer is exhausting in so many ways but I am still so grateful to be able to feel. It means I'm alive and human. Ventibug

Jun 3, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Dear Saltis, Your descriptions of your experiences and emotions are wonderful. Twenty three years is a long time. You give me hope that I may outlive my 18 month prognosis. I've wanted a 50th wedding anniversary for 43 years this week. We will see what God has in mind. Bless you in welcoming that new grandson. Pictures were taken, right?
I, too, am blessed to have a husband who takes excellent care of me. This is a new role for him in this last 6 month and he has really stepped up. I am so grateful. I can't imagine how tired he my become and it is hard to be on the receiving end of nurture all the time. Yet I am so grateful.
You mention feeling foggy. I can tell a difference already so I think you do very well. Thank you for posting. I feel understood when i can empathize with you. Ventibug

Jun 2, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

Yes, it helps. Thank you, Allison.

May 30, 2018 · Diagnosed with sarcoma? Let's share in Cancer

Hello. I have leiomyosarcoma, asymptomatic, as is often the case, until Stage 4. Had diagnosis, radical hysterectomy, removal of sigmoid colon in Feb 16, 2018 Dehiscence (stitches came open) 3/1. No followup care offerred so went to a Sarcoma Center, which has been SO much better, though my body is still struggling to cooperate with the medical plan. Started chemo with just a finger-tip size piece of granulation tissue remaining in healing wound. Unfortunately, that was enough to cause sepsis which was followed by mucocytis. Currently back home (which is lovely) with instructions and IV antibiotics for healing the wound completely. To go back to Sarcoma Center 6/11 for chemo restart. Long saga already, eh? Everyone has one, right?
Grateful for husband (43rd anniversary today) who takes very good care of me, 2 of 3 children very supportive (every family has one), lots of good friends, relationship with Divine that helps my daily life. And sarcoma still sucks. Ive already had a recurrence (before this month off). Not happy about my prognosis but it will be what it will be. I feel good today and it is gorgeous here today. Some days I do okay. Some days I am just sad. Busy trying to close my business this week. Sad. Lots of loss but enjoying what I can. Appreciate everyone's sharing and learn something from every post.

May 29, 2018 · Coping with anxiety while waiting in Cancer: Managing Symptoms

I would welcome the suggestions of others for strategies for coping with anxiety while awaiting the next whatever. CT scans have never given me good news; I look forward to being surprised with good news after cycle 2 of chemo, when team takes the next look. Currently on a 2 week break from chemo due to the need for time to heal wound infection. Sent photos of healing progress to oncologist. I pretty much had it together that he would recommend another week of healing. He recommended 2 more weeks. Since Ive already had a recurrence (last CT news), i am worried my cancer is growing while I wait to be able to resume chemo. I dont disagree with the plan. My inquiry is how to cope with the anxiety? Things that work for me sometimes: knitting; getting lost in a good book; joking with friends; playing with my dogs; praying. Ordered Dr Amit Sood’s book today (thank you, llwortman) to improve mindfulness skills. All suggestions humbly appreciated, Ventibug