This is the greatest community in the world. We reach across time and miles to help each other, usually people we've never met in person. I'm going to share with you a plea written by long-time Kossack bleeding heart, a request for cards for her 30 year old niece who is dying.
Thank you for doing whatever you can for this young woman. Let's make her final days or weeks or months a little less lonely.
I, the quintessential helper, find myself in the awkward position of asking for something for myself. My rationalization is that this request is on behalf of my niece, but – in all honesty – it is for me too.
My 30 year old niece has been suffering with a liver bile duct disease called Primary Sclerosing Colangitis (PSC) for over 8 years, making for one heck of a horrid life.
Primary sclerosing cholangitis is a progressive disease that leads to liver damage and, eventually, liver failure. Liver transplant is the only known cure for primary sclerosing cholangitis, but transplant is typically reserved for people with severe liver damage.
A decent lay overview of PSC can be found at this Wiki entry.
The short-term management is a procedure called an ERCP, which I refer to as roto-rooting out the blockages in the liver bile ducts. However, the scarring of the ducts becomes so significant that the procedure is effective for only so long.. Elaine is at over 8 years post-diagnosis and everyone concluded that it was time for a liver transplant, her only option. She was placed on the transplant list.
Then they found cancer, liver cancer. She was treated for that (draconian), ending with a radiation pellet implanted in her liver via a hellish procedure of doing the insertion through her nose. The procedure was supposed to take 45 minutes; it took 3.5 hours and she was awake the entire time.
Treatment ended. Last Friday, they opened her up to look for cancer. The plan was to do a thorough look all through her gut in a major surgical procedure. If they didn't find cancer, she would be sewn up and would begin the grim vigil of waiting for a liver match and hope it would come in time. If they found cancer, she would be closed up, removed from the transplant list and then determine what level of treatment she wanted, if any. There are few options and they are only life extending (possibly unpleasantly), but there is no cure.
They started the surgery on Friday with only two laparoscopy incisions to begin the examination. That's when they saw all the cancer, through those little incisions, now having metastasized to her gut. They closed her up at that point. At least she was spared the invasive surgery. The doctor is talking about "months" but that could mean anything from over 4 weeks to more time than that. Elaine is very frail, all skin and bones. She weighs about 90 lbs and continues to waste away. She eats, but nothing stays with her. At this rate, she doesn't have many resources to keep her going. Elaine has decided on comfort (Palliative) care. She may receive some treatment, not for cure, but to keep some tumors from expanding any further in order to remain comfortable. She will die in weeks to months and she knows it, as do her parents barring a miracle. I hear that miracles are on short supply these days. In short, it's heartbreaking.
I'm telling you all of this because the situation is indeed very grim and she is in almost unbearable pain that can’t be managed. The docs are looking for that magic combo that will give her comfort. Even the strongest meds don’t help, so it’s not that anyone is withholding strong medical relief for her. She also doesn’t want to be doped up. I for one have been moving fast. I don't want to take anything for granted since, in her weakened state, anything opportunistic like a cold or flu could take her down in a heartbeat. I shudder when she ends up in the hospital for fear of infection.
Through no fault of her own, she also has had a sad life and indeed has never felt loved. That’s not for lack of love, but the family dynamics were such in her childhood that she could never see all the open arms.
I am relatively close to her. We have chronic auto-immune illnesses in common (I have SLE and can at least relate to the medical maze and doctor dance we patients must do. Aspects of that disease have already been diaried so very eloquently by the likes of BFSkinner.
As soon as I heard the results on Friday, I felt compelled to give her as much comfort as I could. This Jan Phillips song on her Highway to Heaven album kept running through my head. It's called I Will Not Leave You Comfortless. That is the entirety of the song, by the way; it’s a repeated mantra for several minutes.
And as I looked at this beautiful young woman with a deep-seated love of children and a voice like an angel now emaciated and so very severely physically and emotionally pained, that’s all I could think: I will not leave you comfortless. Yes, there’s very little comfort right now, but if I can do something, anything, then just do it. But what to do?
I took her some trinkets over the weekend and watched as she reacted to the various items. Through all of her pain and fear, she was so grateful for everything, any gesture, any visit, any consideration. She looked at each and every little item, thanking me for each one, some silly things, some cute things that I had brought for her. I didn’t tell her it took me a half hour of combing through the hospital gift shop to find the right balloon. I found the only one that didn’t say "Get well."
I told her I had all my crazy liberal friends (she's very conservative evangelical) praying and/or sending her good thoughts from all over the country. She was thrilled to hear that. We are very different people with very different belief systems, but we do share love. She has told others that my network is busy sending her good thoughts and clearly takes pleasure in that. But can I do more? And then it came to me:
Cards.
She can't have too many cards, one of the few things that give her pleasure. They don’t cost a lot. A piece of paper is sufficient with a kind word. It can be brief. There isn’t a lot to be said except we’re thinking of you. A child’s drawing. A picture of someone’s family pet. All with a kind word. I invite those so inclined to e-mail me (my addy’s in my profile) for her contact information along with some words that should and should not be said.
This is such a wonderful community. All of you have been so generous with your time and money: money to political candidates, money to causes, time to candidates and causes. You are always being asked for something. So if you have the interest, the time and a stamp, kindly let me know. You can also just send me an e-mail message and I will deliver it to her. And if you can’t do anything right now, could you kindly send her a warm thought, a prayer*, a comforting message from your heart? She would appreciate that too, as would I.
You have my deepest gratitude.
b♥
This lap throw is 40" x 61", made in shades of royal blue and spring green. The cost is $165 plus $13 Priority Mail shipping -- if you would like to contribute toward this gift, here is a PayPal link. Give what you like and when the total has been reached, I will post a comment.
Ann and I are very happy that this little quilt will serve to provide comfort in this terrible situation. We throw our arms around bleeding heart and her niece. {{{{{{{{bleeding heart and niece}}}}}}}}}
Thanks, y'all. Once again, you've got me in tears.♥