Tobey's Medical Emergency

$36,776 of $55,000 goal

Raised by 203 people in 13 months
This picture was taken on May 12, 2018 at the wedding of Loren and Joel which I was delighted to officiate. Five days later, I checked into the ER with what turned out to be a massive pelvic infection. I underwent exploratory surgery, and, in the process, they performed a hysterectomy, colostomy and a nephrostomy. To be honest, I am lucky to be alive (one of my surgeons remarked he was very glad they hadn’t waited even one more day).

I am still in the hospital, recovering in extended care and hopefully, I will go home on Friday, June 29th. This life-changing event has had a huge impact on Mark and me. We have the hope/expectation that the colostomy and nephrostomy can be reversed in the next year. In the meantime, this has been very financially disruptive for us, despite good insurance coverage.

I am unlikely to be able to resume my full-time self-employment for the remainder of 2018. So we are turning to our beloved community for financial help. We appreciate any practical assistance you can offer, as well as the numerous prayers, love, and healing thoughts with which so many of you have bolstered our spirits.

Please donate if you can, please share, and feel free to contact us with other arrangements if online donations don’t work for you.

Thank you from the bottom of our hearts. We couldn’t do this without you; the next six months will be critical.

xoxo, Tobey and Mark
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Dear ones,

It’s been a month and a half since we updated you on Tobey’s health. Tobey has received some beautiful messages and cards, and she (we) appreciate your kindness so much.

Tobey wanted to write this update herself, but frankly, she has been too weak to do so. The last month and a half have actually been, in her words, among the most difficult of all.

We just passed the one-year anniversary of the original surgery. We fully expected that things would be much better by now. Sadly, that is not the case.

Tobey had hoped to attend her 40th high school reunion on May 3rd, but that was impossible. As it turned out, we had to drive down to UCLA for a follow-up with her colorectal surgeon (Dr. Kazanjian) and to have her ureter stent removed by the urologist (Dr. Chin). It’s still difficult for her to ride in a car for any length of time, and the trip to UCLA takes over five hours. What was maddening was that the appointment with the colorectal surgeon (handled by his resident) could have been done over the phone. Tobey had a serious UTI at the time. The resident wanted to wait until that was cleared up before going any further. We broached the possibility of an endoscopy to see if she had a stricture (she has had a lot of difficulty eating without throwing up). He said she would more likely need an upper G.I. series, but that this was not something Dr. Kazanjian could do or refer for her (outside his area of expertise).

So, then we thought we would go to the urologist to have the stent removed. This was important because it has been giving her pain and is impeding the healing of her ureter. Unfortunately, Dr. Kazanjian’s other assistant was supposed to have guaranteed that Dr. Chin or his fellow would be available that Friday to remove the stent. Neither were in that day, and so she blithely told us we would have to come back. Two days in a motel and a 500-mile round trip for nothing! I was livid, and felt this trip really set back Tobey’s recovery.

To complicate matters, Tobey got a clear message from her body that she couldn’t take any more opioids. So, she stopped taking them the day of that trip. After 8 months, she went cold turkey. At first, it seemed a breeze, but then serious detox symptoms set in – weakness, nausea, vomiting, trouble sleeping, depression and muscle twitchiness (especially in her legs). The ileostomy also can lead to dehydration (a lot more water is lost, compared to the colostomy), and her gastric bypass makes it difficult for her to take in large amounts of water at a time. She has tried mightily but has still needed saline infusions from an in-home health nurse. She is getting a little better, but it is slow going – we are hoping she turns a corner in another month.

Rather than give you any further ins and outs on complications regarding her stent removal, suffice it to say we do have an appointment to have this done in San Luis Obispo by her original urologist on June 6th.

One bit of potentially excellent news: we saw Dr. Lutman recently for a follow-up. He is the gynecological oncologist who was part of her original team a year ago. Dr. Lutman is an amazing, compassionate man. He comforted me when Tobey was in recovery (still on a breathing tube) and has been a real mensch in his care and concern for Tobey. He was alarmed that she made such a long trip to UCLA for nothing. Then he had a wonderful idea – he will contact Dr. Kazanjian and see if Kazanjian will allow Dr. Lutman to take down the ileostomy this summer (possibly July). Dr. Lutman can perform both the imaging prior to the procedure and do the procedure himself – since he is part of the original team, we all think the chances are good Dr. Kazanjian will go along with this. This means we’d have the surgery done locally and by someone we like and trust.

We never thought all this would last a year, and it looks like it will be quite some time before Tobey can return to work. Tobey is very diligent and committed to quality, and her current condition has necessitated her turning down work – in her current condition she just can’t deliver the quality she demands of herself.

This is the difficult part where we must turn to our friends and family again for help. The hotel bill for the first trip to UCLA (about two weeks for surgery and recovery) was over $2,500, which drained the last of our Go Fund Me account. We definitely need more help – Tobey is looking into self-employment disability for the state of California, but this is probably a longshot.

We thank you all from the bottom of our hearts – if you can help, we would so appreciate it. If not, please share this.

In Tobey’s words, “We thank you so much for your love and for being part of this journey with us.” I agree – you all have been simply awesome.

Love, Tobey and Mark
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Here is a first ever video report, offering an update and a chance to see with your own eyes how I am doing. I also offer a forecast that it will be another year, more or less, before I am truly fit as a fiddle again. I do need more surgery, and I explain that in the video. I promise I'll get better at these!! XO, Tobey
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Dear ones,

Tobey is sleeping. While more conscious than last night, she is having some short term memory problems because of the anesthesia - so she is repeating some questions about her surgery and the prognosis. I imagine this will pass in a couple of days.

I wanted to tell you a bit more about Tobey's surgeries. I didn't share everything because she didn't know all the facts until this morning. The nephrostomy was taken down, and the urologist did not need to do an auto-transplant (which would have involved moving her left kidney to the right side). He was/is very pleased with the results.

The colorectal portion was much more difficult, and the main reason why she was on the table for over ten hours. There was a lot of scar tissue from her emergency surgery last year, and this had to be removed. There wasn't much colon or rectum to re-attach, and he was concerned that leaving it as it was might have been a recipe for failure.

His solution was an ileostomy. Rather than using the colon, this is an ostomy involving the small intestine. This will let the colon heal and grow strong. So, unfortunately, Tobey has to wear a different ostomy bag - but this one is only temporary. If all goes well, her surgeon feels she will be completely healed within three to four months. Then he will take down the ileostomy and she will be "bag free." Of course, this will involve another trip to L.A. and a hotel stay.

So, I would ask that you continue your prayers and healing energy after we are home. I am praying that by June we can close this chapter and move on!

Thank you again for all the love - I have not been able to reply to all of you individually, but will try in the days ahead. Her surgeon thinks she might be able to go home inside of a week - that would be wonderful!

Much love, Mark
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Dear Ones,

This is it - in one week exactly, I will be on the table at UCLA with surgeons extraordinaires, Dr Arnold Chin and Dr. Kevork Kazanjian, both of whom have excellent reputations as surgeons and teachers. It will probably take about 5-7 hours, but nothing can be predicted for sure. This is exploratory surgery; they are not 100% sure what their exact choices will be until they see what they have to work with. But they have a pretty good idea just the same.

I will be a new me, sort of like Locke's socks for all you philosophy fans, except it is all me, just significantly rearranged. (Don’t know what Locke’s socks are? See https://en.wikipedia.org/wiki/Ship_of_Theseus#History)

Not only have the donations been such a lifeline for us at this time, but I have also been showered with love, kindness, and body treatments by so many of you near and far, as well as by wonderfully gifted healer friends in this area, with promises of even more sessions to come! I am so blessed by these beautiful and devoted friendships, and the many precious persons who are a part of our beloved community. I am super grateful that all this is here for me. The outpouring of love has really been amazing and very healing for me. So thank you for adding to this vast collective ocean of beautiful love with all the many waves of love that you send me.

The surgeons will be re-opening the big ten inch scar that runs from my navel to the pubic line. Using material they will take from my intestines, they will reconstruct connections between my left kidney and bladder, while also 'taking down' the colostomy - more complex than usual in my particular case, on both counts. So please do send prayers, Reiki, love and positive thoughts our way on Weds morning. It will take around 5 - 7 hours, depending on what they find. I should be in the hospital 5-7 days, and then back in Morro Bay with at least 4 months of healing and recovery in front of me.

Thank you again, for all you do, seen and unseen. I love all the little care packages, love notes and cards - thank you so so much. I am feeling very well loved and supported by all of you, my extended beloved communities.

I am ready.

Xo, Tobey

PS: The photo is with my lovely cousin Lisa Dietrich, taken just a few days ago here in Morro Bay
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Raised by 203 people in 13 months
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