Happy at Home

Celina and Marty outside

Marty's been home since December 4th.

Marty walked over 20 steps with his walker, 2 days ago.
He has been outside two times with his wheelchair where he sits on the sun and enjoys the sound of the fountain and the view in his own back yard

He now weighs 110 pounds, fully clothed. a five pound weight gain in 2.5 weeks

The various alternatives we are using are as follows:

Cannabis oil (the doctor suggested placing a few drops right into his formula in his feeding tube)

TumorX  formula:The only doctor who would tell me his condition is not only hopeful, but reversable and spent 45 minutes on the phone helping me
check this out:

http://www.tumorx.com/cachexia_cancer.html
He was diagnosed as cachetic at Stanford, a scary proposition, but there is help.

Probiotics, he had constant diareah  from the antibiotics and now we can reverse it. Have reversed it.

Spirulina

"Mother's Milks" Marijuana tea. It helps with nausea and anxiety.

Pasteurised eggs with Goats milk (used for starving children in impoverished countries) , we shake it, add lots of cold water to thin it for the tube. Enzymes can't have heat or they are useless.Add the enzymes, probiotics, liquid iron and spirulina.Shake again  Then strain it by putting through the double brass coffee filter to be certain nothing will clog the tube.

and we make a soup at night, usually a chicken soup, well filtered through a brass coffee filter so we don't endanger clogging the feeding tube. I thin it with chicken or beef broth to a consistency that won't clog the tube.

He continues to be at goal with his hourly feeding formula which is 70 ML an hour, more than at any time at any hospital or facility.

Okay so there's no more catheters, or caloric flush, his spirits are mostly better and the team has said they are happy he is doing well, much better than they expected.

His son and daughter have been here and their help is appreciated. Christmas was low key but wonderful.

Visits with friends have kept me from sinking into a deep hole of sadness , one night Julie Rix and Renee Godette came and we even had a sleepover when Renee stayed, THAT was a blast!

Our friend Hayne Bendick continues to save me by bringing whatever we need, even green beans for Marty to feed the dogs

So here we are
hoping to continue to gain ground
I am bone tired with little help. There are caregivers who I spend time training. If I am fortunate they will learn enough that he and I trust them enough so I can leave to bank and run errands. We shall see. I spend the night on the couch and give him what he needs. It's better than the hospital.

I am tired bit oh so grateful. Most grateful especially for the Palo Alto medical Foundation team and their Palliative care team who bring nurses, a doctor and therapists. Could not do any of this without theor wonderful support!

Thank you, Thank you!

And as always

Much Love,

Ginny and Marty

looking good

Hello friends and family,

As I write this, it is a little after midnight and all is quiet. There is a caregiver watching Marty, so I am able to lie in bed and catch up before I nod off to sleep.

Marty had a very quiet day, which means he had a chance for some well deserved down time and rest. He was happy to get a soothing warm "bath" and we washed his hair with good quality shampoo. We used french milled mild lavender soap, and he felt relaxed and comforted by it. After that I gave him his favorite magazine, "American Cinematographer" and we both sat quietly and read together side by side. It was delightful and felt wonderful to do something that we did often before this all began, a small return to normal activity. 

Last weekend the kids and grandkids came by to decorate the tree. It was bittersweet for me...The ornaments from years past, brought tears to my eyes as I remembered the times we would decorate the tree together and reminisce over each special ornament, like the one from our first Christmas together, and the beautiful one that looks like the church where we were married. He was having a hard day that day so he wasn't really able to enjoy it as we hoped he would. He was in pain and not much brought a smile to him even though we tried. 

The next morning we sat on the couch and read the newspaper and had coffee together as a family. He was snoozing in this photo..

The tree is lovely and the next day he was able to enjoy it and since then he has looked at it and smiled many times and said, "It's beautiful". We leave the lights on at night as we always have in years past. So he sleeps with the glow of the Christmas tree a few feet from his bed. 

Marty's daughter Chis gave him a shave and he looks like a new man!

I am learning how critical it is to keep visits appropriate to his energy level. People and activities can tire him easily, especially if he is having a "not so good" day. Our caseworker says it's crucial that I keep the communication of his needs front and center. I knew that but it was really nice to hear it from her and feel I have "permission" to do that. And she told me that not only do I have permission but she has given me those marching orders. For Marty's sake as well as mine. It's not easy being a "gatekeeper" of sorts but it's crucial to his healing since he can't really speak for himself. Marty and I have discussed it and are working it out, he says he is depending on me to help communicate his wishes to people. 

We want the visits to continue as it's healing for him to feel the love, it's just that if it's getting to be tiring for him, then he and I are working out signals so I can let people know when it's time for him to rest instead of engage. His caseworker says that we are both still recovering and Marty is still fragile, she is instructing me in how to set a few rules to live by.

So PLEASE continue to schedule some visits, just know that in the middle of  a visit if he signals he needs rest then we might have to let him have that quiet time again.

Marty is learning to use his walker, regaining his balance and strength. He will most likely go out in his chair again tomorrow to sit in the sun. The doctor will come by and I look forward to her assessment. His caseworker was really surprised and happy at how well he is doing. So dear ones thank you for all your prayers, food, calls, cards and love. keep it up...

It's WORKING!

Many blessings,

Ginny Collins

Home sweet Home

Dear ones,

Marty is home. We left Kentfield on Tuesday via ambulance on a smooth ride home...no rain, just about perfect. The sunny day between storms.

 When Marty got home and realized he was home at last, I gave him his medicinal tea and in 15 minutes he was smiling like a cheshire cat. Marty Jr, Christine, Savannah, Mitch, Paul and I were all there to witness the glorious moment. There were tears and a few of us wept openly from relief, joy and the realization of what had been accomplished for this wonderful man.

Marty sleeps when he wants to sleep for as long as he wants. If he needs anything we attend right away. Whether it's meds, repositioning, getting him up, handing him something holding his hand...anything. (No more catheters, no more waiting for nurses or walking the halls searching for assistance.)

He is doing better a little bit every day.

His doctor came to our house and spent a good deal of time. One thing she did was order a reclining wheelchair, which we used today. Marty went outside, down the gentle ramp my cousin Nick Mitchell built and on to the back patio. We sat in the sun and there was laughter and there were many smiles.

First day outside in the reclining chair

His friend Paul Stapleton Smith flew in from Arizona and was essential in the transition, I can't thank him enough for holding my hand through some very dark hours.  

My brother, Mitch, flew in from Canada for the second time since the nightmare began. He helped get the house ready and led the charge with hard work by a loving and willing crew: Mitch Sakolsky, Jean Doyle, Hayne Bendick , Nick Mitchell, Sharon Allen, Celina Guitierez, Sheri Wrachford, Charlie Brown and many more.

During Marty's last week in the hospital old friends who work with Marty came by to share stories.  Here is a photo of Paul with Andy Olsen.

Paul Stapleton Smith and Andy Olsen

My brother Mitch came from Canada for the second time since this all began. We were preparing to bring Marty home with dire predictions from his doctors. They said if there was any chance that he could recover it was only at home. Clearly now we know that home is restorative in and of itself. Here is a photo of my brother talking about the Kindle he bought as a present for his wife. Marty was curious about the technology.

Mitch showing Marty the Kindle

Only one day after Marty got home he sat at the side of the bed for the first time in a very long while ...here is a photo of that precious moment:

Sitting bedside for the first time in a month, first day home

Thank you one and all for your support. After only two weeks of 24/7 care our funds will be extremely low. Our wish is to get him off the vent and back to eating. I will be cutting back on the 24/7 care and getting help in the hours only necessary/ Hopefully he will be stronger by then and we will have less need for hourly care.

If you would care to help us defray costs Here is a site, even a tiny bit helps...So many have given and it has allowed us to get Marty the care he needs. We thank you from our grateful hearts, he is doing very well at home and it's only possible because of your generosity. Here is that site:
http://www.giveforward.com/musicformarty

If you'd like to help with other things then feel free to email me and I can add you to the list of helpers.
ginny@digitalmediafactory.com

Many of you have been kind to ask me to tea or to a show. I am not really able to leave home right now. The help we do have are not nurses, but CNA's. Some know the vent and the feeding tube, some do not. Many of the tasks take two people. If Marty Jr. is here or another able person , then I am able to leave. Otherwise I am the one who assists.That will change as Marty gets stronger. So stay tuned.

We feel truly blessed. And I am beyond happy to be home with Marty. There is no place I would rather be. When I can take a break, like tonight...I walk to the top of the property, sit on the deck and look out over the treetops to the ocean. I am in heaven to be here with him and the friends and family who surround us. We have had friends drop by with food and gifts, or just a hug and a kind word.

Tracy Parker's sister Carol made him a beautiful quilt made with prayers and love ( and many dollars pinned as well :-) Tracy brought it today, a sweet visit...thanks Tracy! And thank you Carol!

Carol's blanket of love

 Marty lies beneath a blanket of love safe and sound and most of all...

Resting and healing.

Blessed be