My donation wishes!

Hey I'm a bi chick and I have a few close friends and family who have had Leukemia and some have been saved by bone marrow transplants and some have passed away because the marrow was not available. Also a lot of research needs to be done in this field which cannot be done without bone marrow donated by people. I am planning to do it. I also think it is horrible that gay men cannot give blood or organ donations. It makes me so angry. :/

But I am going to have some fun too! So I have entered a competition called "Stories Beat Stuff" It is a competition based on what you would trade to charity (basically some thing special to you or something valuable) to win a holiday to New Zealand. I would gladly trade my bone marrow. Obviously I am doing it anyway, but I think winning the trip would be a pretty great bonus for once I recover from the surgery. :)

So please, please vote for my entry! I would appreciate it so much. Thanks for reading guys! 

http://www.newzealand.com/au/campaign/stories-beat-stuff/summer-rhythm/filter/latest/page/1/trade/BC2166B1-A3FB-DF01-2F2718F82A1FD36F/

  • Current Music
    Born This Way - Lady Gaga
23 birthday

Relationships Post-diagnosis

Hello! My name is Patricia Metzger and I am a graduate student studying clinical psychology. Like you, I have been faced my own cancer diagnosis, along with having supported several family members and friends diagnosed with a wide range of cancers and other life-threatening diseases. These experiences have forever touched my life and have inspired me to attempt to better understand the experiences of those facing cancer and other life threatening illnesses.

As part of my dissertation research, I am conducting a study examining interpersonal relationships and communication amongst those facing cancer or another life threatening disease. I hope to gain a greater understanding of cancer's impact on relationships, the role of communication following a diagnosis, and it's role in psychological health and relationship development. In the long term, I plan to develop interventions/therapies to aid in the emotional, psychological, and relational adjustment to this disease.

I am currently seeking participants in a study of relationships after one partner has received a diagnosis of cancer. Any person who is part of a serious, long term relationship (e.g., married, partnered, engaged, etc.) and has either received such a diagnosis, or has a spouse/partner with a diagnosis, is invited to participate. Both halves of the couple are asked to complete the survey; if both persons complete it, they will receive $25 compensaion. Alternatively, these funds can be donated to a charitable organization of your choice, such as the American Cancer Society, National Hospice and Palliative Care Organization, Susan G. Komen Foundation, or any other organization of your choosing.

You and your partner are invited to participate in a brief study lasting no more than 20 minutes - most persons complete the survey in just 10-15 minutes. It will ask you about your experiences following diagnosis with cancer. Only persons who are part of a long-term relationship should complete the survey; we also ask you to refer your spouse/partner to also complete the questionnaire. All responses are confidential and anonymous; no identifying information will be collected. Responses will be used only in aggregate form, so that no one can identify your responses.

The web address for the study is:

https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6

In exchange for completion, $25 compensation will be offered to couples where both persons complete the study. Funds are only available if BOTH partners complete the survey. You are asked, following your completion, to ask your spouse/partner to also complete the study. You should simply refer them to the same web address noted above. Available funds can be mailed to you, or donated to a charity of your choice. If you choose to have funds mailed to you, contact information will be stored separately from your survey responses.

To refer your partner and receive compensation, you should direct your spouse/partner to this same survey link (https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6). Completion by both you and your spouse/partner will better help us understand relational issues resulting from diagnosis and will help us to develop interventions, treatments, and therapies that will facilitate coping with this difficult life event.

If you have any questions, comments, or concerns, please contact me at the following email address: metzger@uwyo.edu.

Thank you very much for your assistance on this project! Completion will help us better address the needs of those facing cancer and other serious illnesses so as to minimize the stressors at this time. If interested, please contact me via email (metzger@uwyo.edu) for the results of the study.

Again, you can access this brief study at:

https://survey.uwyo.edu/TakeSurvey.aspx?SurveyID=l4LK8pl6


Sincerely,

Patricia L. Metzger, M.S.
University of Wyoming
Department of Psychology
metzger@uwyo.edu

NOTE: Please encourage your partner to take this! It's a small amount of time and is a huge help in the long-term goal of developing interventions for those facing this horrible illness - understanding BOTH sides of the story takes this someplace research hasn't gone. THANKS for your help!!
Grinch Hug

National Hug Your Caregiver Day Initiative


National Hug Your Caregiver Day Initiative
November 21st

Caregivers are the backbone that supports our society. They come in many shapes, sizes, and focus in many different areas. Everybody knows caregivers. They can be parents, spouses, family, friends, healthcare providers, massage therapists, chiropractors, nanny's, babysitters, pet sitters, or anybody else who has taken care of another living being.

Caregivers are also some of the most ignored and taken for granted people in our society. These people dedicate part of their lives, if not their whole lives, to caring for others. And yet, they are often touch deprived and feel under/un-appreciated.

Started in 2008, the National Hug Your Caregiver Day Initiative is trying to raise awareness about caregiver appreciation. We are helping people learn to show their appreciation for the caregivers in their lives.

Join our yahoo group at: http://groups.yahoo.com/group/hug_your_caregiver_day/

Use this blog to share your stories about caregiving, or to share your stories about a caregiver who is special to you. 


The website is being created and will be going live by January 2009. 


"Smile! You're getting hugged!"
  • Current Mood
    ecstatic ecstatic
strolling bear

Limbo

My Lady had a mastectomy Feb 2007. Estrogen+, so they gave her tamoxifen. She's also diabetic and takes actos. A couple weeks ago she was informed that actos blocks tamoxifen's effects, which probably explains why she's still menstruating regularly. We inquired about that some time last summer, and her hotshot doc said it was nothing to worry about. Only because insurance denied refills on the tamoxifen because of this interaction (after having always filled it for a year and a half) are we aware of the effects of the drugs together.

We've been scared, and plenty more. Today she went in for another mash-o-gram. We get the results read on Monday.

We're still scared, and sad, and angry...

What do you do?
Kelli Ma am Boi at Nolose

Hey all

I just wanted to check in and see how everyone is doing.

I am okay. Not great, but okay, and I am very happy to be doing that well.

Hugs and strength to you all!
Kelli in New york in front of the skateb

Symposium on Queers and Cancer

Hey there everyone.

I think some folks on this community were actually at this event, but I wanted to post a link to a cancer survivors' panel at the Cancer In Our Lives Conference in SF last fall. Heather spoke at the one of the panels for providers' and today I really wanted to hear her voice so I listened to it, and was reminded of how amazing the whole thing was, with different people sharing about advocacy and getting the best care for the LGBT folks. Heather ended her piece of the presentation with an admonition to providers: "Don't mistake our passion for stridency."

Anyway, you can listen to the MP3 file here.

And info about the conference in general is here.

3four50.com - Social Network

Hi there,

I hope it's OK for me to post on your journal, it's just that I am collaborating with the interactive website 3four50.com which deals with health issues and chronic diseases such as some cancers, where you will find the opportunity to network with people from many different backgrounds and expertise around the world, as well as the opportunity to post photos, blogs, watch videos and comment about everything!

 

You might want to take a look at the Experiences section where you can share your stories and experiences - we'd love to have your blogs on the site, as well as any photos or feedback.

 

I look forward to seeing you at 3four50.com, and hope we can build a really useful, supportive network.

 

Warm regards,

 

Debra.

beauty

Emotional Roller Coaster Ride

So today has been an emotional roller coaster ride. You would expect me to be instantly elated when I heard the news that Jeanine's PET scan came back negative for Cancer and Possitive for grey matter ;-) But no, I started to panic... yup had me a mighty fine panic attack and am just coming down from it (after researching, listening to music, watching a movie about Meat Loaf the singer, and writing) about 6 hours later. Yup.. should have had me some xanax already... I never remember in time to avoid the after panic headache and cry head (even though I really didn't cry.. well OK.. I did my one eye cry I learned to do as a kid).

Anyhow, I re-read a bunch of messages from folks on our Merkel Cell Cancer Google Group. I wanted to make certain I was remembering advice correctly because I had myself convinced that PET scan die doesn't pick up MCC cells and she needs and MRI as well. Thankfully I found out that there was only one person who posted that their PET didn't pick up the MCC only the MRI did. In fact the PET is the Mama Jama of all tests recommended for this cancer and I totally faked my way through my arguement with the oncologist about the latest protocols for MCC stating they definitively state a PET should be done. Um.. they don't but he did it anyway. So... I think everything is OK. I think I ended up with what I was fighting for back in February. I can't really remember. Dang.. I'm starting to panic again. ugh!

Anyway, I thought I would share a post from a group member (and 5 year MCC survivor, Heather, a true angel here on earth) in response to my call for advice on how to advocate for Jeanine (Back on January 5th). It pretty much sums up how I'm fealing.

"My heart goes out to you at this time, Susan. In my opinion (as a
former patient), the job of a caregiver is even harder than that of the
person who has the disease. And now that you and Jeanine are rounding
the corner and finishing treatment, you are now getting the first taste
of "survivorship"... which for me was almost as difficult as the
treatment! Before you had everyone weighing in on "what to do" and
"how to fix it" (doctors, friends and family, etc)... everyone banded
together and was talking about "surviving" and "beating the cancer".
Now that treatment is over, doctors are like "Well, you're done! See
you later! Congratulations on surviving!" Friends and family are like,
"Congratulations! Now go out and live your life!" But how are YOU
supposed to switch gears? For months you have been immersed in the
"cancer culture", fighting every day, afraid of dying... and now the
cancer culture is done, and there's nothing to do to fight, and you
don't remember how to live without being afraid. Survivorship is much
harder than one would think!

Have either of you thought about finding a support group for survivors?
(The good thing about those support groups is that it doesn't matter
what kind of cancer they had, and you don't need to find one specific
to Merkel Cell...) That may help you to vent a little. Also, four
years after I finished treatment, I picked up Lance Armstrong's book
"It's Not About the Bike"... I thought it had a great chapter in it on
survivorship and the feeling of being "lost". Sometimes it just feels
good to know you're not the only one..."

OK... I'm crying now. Finally. Sorry if I made anyone else cry. Good news is crying makes room for feelings and expressing those feelings makes room for healing... OK now I'm counceling you... I'm off to bed.

Night all! Group Hugs & Kisses!
SueB :o)
  • Current Mood
    relaxed mushy
courage

Introspection on the 4th

Jeanine has gone off to bed but I am up catching up on my list reading. I've been so busy and away for a few weeks that I haven't read much in about a month.

This fourth of July was very different than last years. For one, this morning we sat on our front porch, almost carefree and watched the parade pass by (instead of packing up our apartment). At one point my memory failed me and I asked Jeanine why this year she decided she wouldn't mind watching the parade. She reminded me that she had nothing against the parade last year, it was her nerves. She was scheduled for surgery the next day, to have her first surgery in fact, to remove her left parotid gland. Wow.. It's been a year from that first surgery. Unbelievable... she doesn't consider it as a milestone. She said that once we get to mid January (the one year anniversary of her last chemo treatment) she'll consider that a milestone.

This afternoon we had friends over for a meal in the afternoon (instead of having them over for a painting party and grilling on the front porch in the rain). Tonight, we get to go to sleep not worrying about surgery. A year ago we thought she might have Lymphoma (now we are hoping the PET scan on Saturday shows up clean with no traces of MCC).

A couple of days ago we found out that the oncologist called our family physician to cancel her MRI ... he wants to see what the PET shows first. She is fine with this. I am tired of fighting about the MRI. It took A LOT of energy to get her to read the research and then threaten to switch doctors befor the oncologist would agree to both a PET and MRI. Jeanine is scared about the results of the test and really isn't fond of the thought of radioactive material coursing through her veins. I'm not at all scared, I'm MAD. I'm ticked that the dang b-stard pulled a fast one by calling our Primary (the guy who writes the rx for the scans and also knows nothing about MCC) and convinced him to cancel the MRI. But, she is scared and is still having memory issues related to the chemo, so she probably doesn't remember the hassle we went through to get the MRI scheduled. Rather than making a big sceen and causing more stress I didn't make a fuss. We'll get the PET and even if it's clean I'm still going to insist on the darn MRI. She just wants to move on with her life (she hasn't read the MCC support group list in months because she doesn't want to think about MCC anymore than she does on a daily basis ... when her scars hurt or she can't do something with her left arm because she doesn't have the muscles necessary to do the action or sometimes when I just nudge her wrist a bit so I can put my arm around her waste for a hug and she winces and gasps a bit because shooting pains are going into her shoulder). I don't get scared about cancer anymore. I get MAD because her dying is not an option and until she can remember important information and advocate well for herself, My job is to make sure she has a long life. Dr. Roger Cohen at Fox Chase, watch out. She's getting that dang MRI!

SueB :o)