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

Leap of faith

Dear ones,

Marty's journey is going in a new direction. Last week we began discussions with his team, here at Kentfield rehab about Marty's options moving forward. After days of thoughtful discussions with them, Marty's family, my family, close friends and counselors and most of all, Marty...it appears the road will lead us home.

Marty continues to have complex medical issues, he is still vent dependent, his immune system is highly compromised and he has not been successful at retaining calories. Any one of those is dangerous, and having all three make for a fragile person. It means the decision to come home becomes a leap of faith. Faith that the home environment will provide something that will have a healing effect beyond something he can receive in a sub-acute care facility, which is the only other option.

Marty told us this week, "I want to live". Which is a much more life affirming statement than, "I'm done".

He has been receiving lovely visits from dear ones who have traveled great and small distances to express their love, affection and deep admiration. The staff at Kentfield are gracious, caring and deeply committed to his healing and care. We are extremely grateful for them.

My brother, Mitch and Marty's long time friend, Paul-Stapleton Smith are here with me and are helping with the mountain of logistics. Our dear friends Hayne and Mitch are also helping out on the home front as well as Celina and several others.

We have spoken with the Palliative care team at PAMF and they are helping arrange for a pulmonary doctor, nurses, respiratory therapists and others who can come to the house to assist with Marty's healing. Palliative care is a way to help give us the support and comfort Marty needs if he wants to heal and get better. It is not hospice, our current plan is to get him home to heal. PAMF provides people with critical illnesses intervention and therapies, even at home.

We will need and nurse at home 24/7 and they start at $30 , and go up to $60 an hour. Our current funds will not that sustain for very long. If you care to help with Marty's comfort and care you can through this site, feel free to share:
http://www.giveforward.com/musicformarty

On Monday we began training on the ventilator. And the house had a thorough cleaning, We are making arrangements for equipment and such.

We are hoping the transition home goes smoothly. .. please help us hold that vision.

“. . . Where, no matter how things may ever seem, you'd be bathed in love, surrounded by friends, safe and sound in your very own bed. And where, upon waking, all that you loved and learned in that lifetime would remain with you, and all that scared and threatened you would only have prepared you for even more love and learning in the near future . . .”
(from tut.com “Totally Unique Thoughts”)

Many blessings and much love,

Ginny MItchell Collins
and team Marty

A room with a view, Marin General

Whew,

Well, here we are a Sunday approaches and we are at Marin general.

Marty was having some difficult days at Kentfield, just when we would get through one challenge, another would pop up. On Friday his doctor called Stanford and told them it was time for him to get to a place with a higher level of care. Stanford agreed and we were ready to transfer back to Stanford ICU. Then it turned out they didn't have a bed. It was a very good thing. Marty was transferred quickly to the ER at Marin General. I went with him of course. He said he'd be nervous if I was driving behind them.

He was in his ER room less than a minute when his trach had a blockage and he couldn't get air. His heart rate went over 170 and his blood pressure dropped. The ER team flocked to him as I chased his ER doctor to his office and ushered him back to Marty's side.(As gently as I could without screaming, but it was an urgent prodding and I wasn't taking no) The team ushered me out of Marty's room as they went to work. Marty had become non responsive. I was more frightened than I have been since this all began. I called Rev D, who picked up and said a powerful prayer acknowledging Marty's powerful life force and more.

They brought the chaplain over and tissues, and I prepared myself for whatever would come next...minutes dragged on and it was surreal.

The doc came out and told me they had gotten him stable and they rushed him up for a ct scan to see if he had a blood clot in his lungs, my mind was reeling. I went with them and as he came out from the CT scan I held his hand as they wheeled him to his room in the ICU.

Waiting outside as they readied him the chaplain stayed with me quietly as I continued to breathe per REV D's instructions. My mind was calming my spirit was rising. I realized we'd made it through and gradually the fear subsided. I went into his room and they were working quickly efficiently adding bags of fluids, electrolytes, vitamens, antibiotics and more. They believed it was pneumonia, and perhaps more infections, maybe c-dif and sepsis. He already looked better. The chaplain was still beside me quietly holding my hand and then Kathleen Cutter arrived and Marty Jr. soon after followed by Rich and Christine. The family surrounded us with love and support. we huddled together, grateful.

It is clear that there was little time to spare and the fact that there was no bed at Stanford and the resulting transfer to MG, meant that when the blockage happened he was not in and ambulance in Friday traffic through the bay area but safe in the ER.

Winston ( our Yorkie ) stayed over with the Cutters and got spoiled by the kids. Marty Jr., Chris and I camped out at Marin general sleeping on couches and chairs, not wanting to be anywhere but where Marty is.

Yesterday looking at Marty, his color and vitals were better. I said, "nice to have you back" and he said " I didn't go anywhere". And I know he isn't planning to be anywhere but right here with all of us, healing until we go home.

The diagnosis is pneumonia, he's getting what he needs.

I am confident we continue to stay in "all needs met" consciousness.

Thank you for your continued support.

Much love,

Ginny

Wed, Nov 7th

Early morning, Santa Cruz.

Marty was continuing to lose weight and had not enough energy to respond over the weekend. So we were all very worried. Then his heart rate went sky high and his blood pressure dropped. His doctor was gone as was his case worker. Thank God for the nurses. The interim doctor stepped in and dropped back on his meds, gave him fluids and some protein and it seems to have worked. I don't know his current weight, however yesterday he was looking much better and responding really well. He also seemed in better spirits.

Before his doctor left last week, he had ordered a CT scan. The scan was to be with contrast of his abdomen to see if they could find a reason for his belly pain and a reason for the weight loss.So yesterday we were back in an ambulance to Marin General for the scan and then back to Kentfield. Beautiful day for a ride but, still it's kind of traumatic for Marty and by then he was off any anxiety or pain meds.So when he gt back he was exhausted.

We watched the early election results come in and I watched to be sure he was settled in and alright, before I drove back to Santa Cruz.

We were hoping that Stanford would take him back, as his doctors there would really like that. However it doesn't appear that Stanford is taking any responsibility in all of this. So ...we are looking at possible actions to help get their attention.

Marty Jr will be with him today and I will be at DMF for a few meetings and then come home to practice for my gig tonight with Hot Club Pacific. Marty was clear that he believed I should come back and sing tonight, even though it's hard for either of us to spend a day apart. I am comforted knowing his regular doctor returns today and Marty Jr is there to help be sure nothing falls through the cracks.

Now this main issue is still the weight loss which is what began this journey in July. Kepp us in your prayers. Marty is fighting the good fight and staying strong. We are confident we will egt through this and get him home.

Thank you my friends,

Ginny & Marty Collins

Friday, November 2nd,

A beautiful fall day. Maple leaves in all the autumn colors carpet the ground. Halloween has come and gone and Thanksgiving is around the corner.

Today Marty had a "swallow test". They gave him apple juice with blue dye in it. Then they suctioned him to see if the blue dye had gotten in his lungs and it had NOT! Which means he is one more test from being able to eat and drink again. (although his doctor here says it's not a certain thing while still on the vent...) I envision Marty eating pumpkin pie at Thanksgiving!

His weight loss seems to be halted at a scary 104.5. But it has stopped!We will look at his weight again tomorrow to see a "trend". (Hopefully up and steady)

Tracy Parker, Patti Maxine, Kath Cutter and Marty Jr visited on Wednesday, for a sweet day of song and good company. Lots of smiles.

It is possible that someday soon Marty will be off the vent, which is what this is all about. Then it's home to Santa Cruz, because there is a good rehab there (Dominican rehab)

Keep that vision happening my friends.

Marty home in Santa Cruz for Thanksgiving!

Good medicine

 

 

Good Morning friends,

Marty got weighed and he is back down to just under 105 pounds. :-(
The doctor has added some fluids and also is administering food via the TPN line as well as through the j-tube. 

Unfortunately it might make Santa Clara Valley Medical Center see him as not such a good candidate. But he NEEDs to gain weight to get any traction.

Right now I write this from Santa Cruz, as I continue to come home 2 days a week. Mondays I go in to the studio to touch base and try to help the folks keep Marty's dream alive there. On Sundays I try to get to church and then back to the house to help prepare the place, by making access easier for Marty. Here is a photo of stage one:

Kimberly and Mitch, digging in to help Marty

 Our thanks to Carolyn Jackson, Mitch Sakolsky, Kimberly Parrish and Helen Behar who came over to help out for our first Sunday work party. They brought food and friendship.

After we got the first part of the driveway finished we had a lovely supper and then Marty's daughter, Christine called us so we could video phone with Marty. So we all got to see him and he got to see us. That put a big ol' smile on his face. Love the technology.

So if you pray, visualize, think positive ot whatever you do...please continue to think of Marty healing and coming home with a stop over at Santa Clara Valley medical Center.

Our thanks,

Ginny & Marty



 

A Gentle Stranger

Friday, October 26th

Physical Therapy began in the chair for an hour today then after he was back in bed more exercises. So I have some photos to for the folks interested.

The discussion with the doctor and Respiratory folks was interesting. If he is weaning he is using calories, so he might not gain weight or gather as much strength. So...they will rest him over the weekend (no weaning :-( )  so hopefully he will gain weight and gather some strength.

It's the 3 steps forward two steps back dance.

In the afternoon, we had a visit from the chaplain , Betsy, who is a very nice tall lady with an Episcopalian background. She was in Marty's room when I got back from getting some ice water. They were having a pleasant exchange so I didn't interrupt but watched and listened for a bit. Then she asked him if she could "borrow" me. We went for coffee and had a very interesting talk. She said she had expressed to him that by the photos on the wall it looked as of he had led a very full and interesting life and he answered right away "and more to come". I was happy to hear that. Sometimes a person from outside can bring fresh eyes and ears. She and I had a really good exchange about the importance of hope, and noticing small improvements. She left me with a good deal to think about, and I was glad for the visit. I believe that Marty was as well.

In the afternoon Marty wanted to write something, so he picked up the small yellow writing pad and the pen and wrote this:

Melting...

Physical Therapist, Heather working with Marty on his core strength

Building Strength, one day at a time

Marty Jr. was here to visit with his "pops" today. he went by the house on Escalona to scope it out for improvements we need to make for Marty's return. here is  an initial rough sketch he's made. We are excited about how it's shaping up. More to come.

So all in all, Friday was a pretty good day. I am so grateful for that. 

Good night my friends and family, from the house in the trees, under a big bright moon.

Ginny & "Sir Winston" the wonder dog

a better day today

October 25th, Thursday

After yesterday it could only get better. And it did, a little bit. Thank God for that. 

When I awoke I began the day tired and dragged myself out of bed, showered and drove to Kentfield thinking he had Physical Therapy at 9:30. However for some reason they didn't come. Oh well.

They did arrive after awhile, he had started the weaning mode again , which means any activity can tire him and put him in distress. However, they got him into the chair and he did alright for nearly an hour. Then they put him back on regular settings and OT (occupational therapy) came in and did some exercises with him. He went back to bed, took a nap and all was good. Not a single problem or issue. A good morning!

The feeding formula that Marty had was obviously not being tolerated well, so they have changed it again and raised the amount per hour. I am praying this will be a solution that helps him gain weight and thus his strength. 

The team is holding it's breath, hoping he can be accepted to Santa Clara Valley Medical Center. It has such a fine reputation. God I hope he meets criteria there.

I met 3 different wives today with different and interesting (albeit very sad) stories. All of our husbands are in one of those beds tonight and we all spend our days there. A new sisterhood.  We arrived alone with them and now we meet one another in the halls or on a bench outside and visit and talk...a new "family of friends" a thread of understanding. Bless them all. So very hard.

Thank you friends for understanding. Thank you for caring.

Love,

Ginny

 

Here is a picture of Winston on the bed with Marty, while Marty watched the first game of the World series last night

 

5 facilities in 5 weeks

Well...I know there are friends and family who really do want to know what's going on, so for those who wish and those who care to know I am filling you in.

How to begin?

When we arrived at Kentfield (3 weeks ago now) Marty  was not gaining weight, but losing and was down to a dangerous 103.5 pounds. He was low on blood. How low? After one week they sent him to Marin General, where they gave him five units of blood. You and I have 10-12 at best. They gave him 3 units of fluids and a room with a view for three days and sent him back to Kentfield. If we had stayed nine days-Medicare clock would have begun again and we would be able to stay at Kentfield another 38 days. As it is we need to leave, vacate by the 31st of October.

He had gained weight there, mostly fluid and was doing well except that his lungs also had fluid on them and so they gave him lasix to bring down the fluid. Now his weight is going down down down again. So today they gave him a new diet a higher calorie liquid food through his j-tube, which of course gave him -you guessed it...Montezuma's revenge. Which as we all know ALSO contributes to malnutrition and needing fluids. What a vicious cycle.

I am reading Gail Sheehy's book, "Passages in Caregiving". She talks about catheters and how they lead to infections. So I asked if they had taken out the catheter that Marin General had given him and of course (because it was easier for the nurses) they hadn't even thought of it. So I asked nicely if they could take it out and they obliged. Marty said, but "It's been awhile and wasn't even certain if he could do the necessary duty without making a mess for them" I said, "Honey you have been peeing for 71 years without a god dammed catheter, I think your body will know what to do after only two weeks". Sure enough he did fine the very first time! I was very proud of him.

The Physical therapist was in at 9:30 am, and Marty asked for the RT to be there (smart man) while they got him up and in a chair. Even that was a major feat. He did fine, stood up on his own took many steps side to side...but just sitting up after 3 months is taxing. He did fine, however after an hour he needed to lie down and then, in the moving back to bed the trach got moved around and it caused him to not be getting enough air. Call to the RT (Respiratory therapist) and when the RT finally showed up, Marty's oxygen had started dropping , he was panicked ( and I wasn't happy) but he fixed it and we were sailing again.
His j-tube began leaking today, yup it was "stuck" nothing going in. Not meds, not food. Nothing. so they flushed it and today's nurse (who Marty thinks completely incompetent)  simply walked away and in 1/2 hour the liquid diet was all over him and the bed. The 3rd cleaning of the day began (which means moving him, the tubes and everything else) More calls to the Respiratory therapist (RT) to intervene so he can breathe again, without distress and his alarms going off.

Today I was talking with Marty about our application for Medi-Cal. I said it is a good thing that his name is not on our house because that will help. He wanted to write, I gave him the writing board he wrote " It's as if I don't exist" . I asked why, he wrote " No assets" I said, "Honey, our true bank account... it's like what Richard Hoover of Santa Cruz Guitars said"... "our wealth is in the relationships we grow and the community we gather around us in times of trouble" and" YOU are wealthy beyond measure". I wrote out the names of all the people who have gathered around us to help (it took quite awhile) and I asked him to really look at that for awhile. he did. Then I told him, "these people love you and are devoted to you. No amount of money can ever purchase that." Sometimes it takes a bit of a re-frame. He felt better after that.

Well it's very early , I am up again after a worrisome troubled sleep so I write. Today will be another day. 

The good news is we are looking to move next week to an excellent facility, Santa Clara Valley Medical center rehab. I am hoping Marty meets the criteria.

Thanks you and please write us at:
ginny@digitalmediafactory.com

Thank you friends,

Ginny Collins

This was Marty just one day after the j-tube was put in, before the perforated bowel and this whole mess began

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