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Tobey's Medical Emergency

$30,108 of $35,000 goal

Raised by 155 people in 8 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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Around the Sun 3/8 and Back to Surgery 3/28

Friday is International Women's Day, and also my 58th birthday. This past year has been a real doozy, and I am ready to put it behind me. It is an exciting and challenging time to be alive, a state of being that I no longer take for granted.

At the end of March, I will have my reconstructive surgery. A lot of you have asked what that means. The surgeons are using my own intestinal tissue to recreate waste processing connections that got lost in my emergency surgery last May. Once this new surgery is complete, I will no longer have any ostomy bags and will feel very much as though I have gotten my body back. I can't begin to express how much I am looking forward to this.

Getting here has not been easy. I have spoken with a couple of very dear friends, including my beloved Mark, and they have encouraged me to be candid. I appear to be doing really well with everything, and am even quite functional. But the truth is that I am suffering in a big way. I have debilitating depression caused by my physiological response to the tremendous stress that this emergency has created. It's understandable, but that doesn't make it any easier to bear.

I have also been in a great deal of pain which for me is really unusual, for as we now know, I have a dangerously high pain tolerance. I should have been able to tell that I was so sick last year, but I did not feel the pain until it was almost too late. So when I tell you now that the pain is quite severe, you know it has to be pretty much off the charts. This also adds to my depression.

Finally, I am very afraid of the upcoming surgery. Pretty much terrified. This is also understandable, and yet because fear is highly irrational, I have not succeeded in talking myself out of it. It does not bow to logic. My therapist is very proud of me, but the truth is that I am still feeling exceedingly vulnerable. They say that sharing grief and asking for help are two of the hardest things to do. I know I find it very hard.

All that said, and while we have been stunned by everyone's generosity, we are still about 8K short on the Go Fund Me campaign, and I am particularly worried about how we will get through the last five months (we hope it's just five) of this health journey. We need funds to cover the hotel bill for Mark while I am in the hospital, and to meet several months of rent until I can pick up the slack again. I will not be able to work full time again until August. I do have big plans, with new classes and an eco-activism project I am excited about, but I have to be patient.

I do have absolute faith that I will get through this and back to radiant health later this year. In the meantime, we can only put one foot in front of the other, stay present, and focus on my recovery. My friend advised me not to assume that everyone has done what they can; it's not my decision to make, she said. Perhaps there is still more my friends and family can offer, given the chance to do so. So I leave it to you. This might just be one of the hardest moments of my life, which, if you have known me for a while, you know is really saying something.

Please do not feel pressured to do more than is comfortable for you. Know that we appreciate all the many kindnesses, massages, Reiki, prayers, conversations, food and treats, and all the ways besides money in which people have been so gracious and lovely. And yes, donations are really great too! LOL.

In closing, let me leave you with this cute video of rabbits eating dandelions and frolicking about together. As Maya Angelou says, what we really remember about people is the way they make us feel. So despite the sadness of my personal situation, please do remember that there's lots to be joyful about, and if you need encouragement, let me suggest that you check into my Facebook group, Yes to Positive Social Change Now, which I curate in order to stem the tide of negativity and hopelessness that pervades our modern culture. There are plenty of individual heroes out there, making a difference as much as they can. I bet one of them is reading this email right now.

With all my love, Tobey
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Dear ones,

It has been a very busy time for us, and we’re sorry these updates haven’t been as frequent.

That said, we do have some great news: Dr. Kazanjian (colorectal surgeon) at UCLA has agreed to do Tobey’s surgery! He will be taking down Tobey’s colostomy – he is an excellent surgeon and we know he would not agree to the procedure unless there was a very high chance of success, so we are very encouraged. Dr. Chin (also of UCLA) will be taking care of rebuilding Tobey’s left ureter with a segment of her intestine and removing her nephrostomy tube.

We have a pre-op appointment with each doctor on March 15th. The actual surgeries will take place on March 28th, and then Tobey will be in recovery at UCLA for 5-7 days… Certainly much better than the six weeks she was hospitalized back in May-June!

While all this is wonderful news, experience has taught us that recovery takes much longer than the hospital stay. The effects of anesthesia linger, and Tobey will still not be able to resume her work as an editor, writer and Change Agent until August, most likely. This, coupled with a long hotel stay for me, means we must again depend on the Go Fund Me campaign to offset expenses. All of you have been so generous, and please know we appreciate everything you’ve done. (By the way, I’ll be staying at Tiverton House near campus – they have very good rates for those who have family at the Med Center)

We’re so excited that Tobey will soon be ostomy-free, and we thank you so much for your kind thoughts, prayers and generous donations. We love you all and our hearts are filled with gratitude.

Much, much love, Mark and Tobey
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Go Fund Me update 11/19

Tobey writing here - first off let me thank Mark for doing such a great job keeping the lines of communication going these past six months. On so many levels, I am blessed to have him in my life. And he chauffeurs me everywhere!

Most recently Mark took me to UCLA for a consultation with the second surgeon, the colo-rectal guy who will be taking down my colostomy. At least
we hope that is how it is going to play out, but we have hit some delays and the earliest surgery date we are now looking at is February, though it may be later. There are some possible barriers, and the surgeon needs to see some better imaging before he will commit to undertaking this procedure. This imaging should happen in early December, again back at UCLA. It is possible (though perhaps not likely) that I will be stuck with this colostomy for the long haul. Let us pray that is not what happens. I am holding strong to my vision of recovering my full, radiant health.

Were UCLA to decide that they do not want to do the colostomy takedown, then we could return our attention to the City of Hope surgeon who came so highly recommended. I am sure that however it shapes up, it will be for everyone's highest and best good. I simply must continue to be very patient. It is of course much easier said than done! It has been frustrating, but hopefully now we can more accurately manage our expectations of how quickly this all will be resolved. Sigh.

The surgeon has said that the best thing I can do to minimize complications is to continue to lose weight; he'd like to see me lose another ten to fifteen pounds before the February surgery date. I think this is entirely manageable. Mark and I will be looking at doing more hikes in the area and perhaps buying some bicycles as well. We shall see. It depends on how rainy our winter is here, and of course we do pray for lots of rain as we really need it here on the central coast which depends on seasonal rainwater for so much of its water supply. Time spent in nature has been very healing and helpful to me.

My depression and anxiety has abated some; I have a new antidepressant that is working better. My tension levels are still very high and I am having a lot of back, neck and shoulder pain, as well as kidney pain from my nephrostomy tube. We were in the ER this weekend getting that replaced - hopefully that will make things better but it is too soon to tell just yet. In the meantime, thank goodness for pain meds! I would be a basket case without them (and yes, I am being cautious about not overusing them).

Due to the ongoing timeline for this surgery and the approximate four months of recovery I will need before resuming work in earnest, we will have to raise our goal one more time. We have been stunned by the generosity we have received from so many, and our gratitude is boundless. We have a lot to be thankful for this Thanksgiving, not the least of which is still being alive! Every new doctor I interact with is pretty much stunned by all that has happened and how well I am doing despite still needing this reconstructive surgery.

Please share my campaign if you have not done so already. Word of mouth is key to getting more traction on the funding. And thank you - SO MUCH! - everyone who has donated so far. Happy Thanksgiving and may blessings rain down on us all as we approach 2019.

xoxoxoxo,

Tobey
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Quick update: UCLA consultation is now scheduled for Fri Nov 16th. At least now we know when we will next go to UCLA. It was like pulling teeth getting that situation straightened out, but we seem to be back on track. This probably means my surgery will happen mid-Dec - about a month later than we thought. We still don't know if they can do all the work in one session or if it will be two, but at least we're moving forward. Many deep thanks to all those who continue to support us with love and donations. Thank you for your shares and prayers <3
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Raised by 155 people in 8 months
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