The master plan

I am the queen of the “stay tuned” post with no follow up. Of course maintaining 2 blogs, 3 Instagram accounts, 2 twitter accounts and Facebook may have something to do with it. I forget where I have made my updates. 

I feel like I have pulled myself together a bit. My consult in San Francisco definitely put my mind at ease to a certain extent. I loved the surgeon and her staff, I got my two pages of questions answered and I got scheduled for surgery. It’s next week. Yikes. 

Fun fact. I have beautiful kidneys. The surgeon pulled up my CT scan and walked us through the slices to show me where the mass was located. It’s on the top front of my right kidney. That’s when she remarked I had beautiful kidneys. It does not appear that the mass has gone into any of the collection systems of the kidney so it looks like it can be removed cleanly without impacting kidney function. Good news. 

They won’t be able to confirm Stage and grade until after surgery. At this point she says it’s a 75% chance it is clear cell renal cell carcinoma. There are a few other type of RCC and a few non-malignant things it could be but she feels pretty sure of what she will find. Hopefully the pathology comes back quickly. 

The plan is that she will do the surgery with the Da Vinci robot which will be minimally invasive and a faster healing time. I should be in the hospital for 2-3 days. However, since I have a history of adhesions from my 2 prior abdominal surgeries, there is a chance it may be an open surgery. I won’t know for sure until I wake up. Yikes. 

Knowing I will be at UCSF is a relief. That place just inspires confidence. And the services they offer are amazing. The consult I had with the oncology nutrition department was really interesting. That’s just a free service they provide that will be available to me now that I am a patient. The good news is I don’t have to change much. I eat really well in general and I have started the shift towards plant based. The dietician basically said she didn’t have a lot of suggestions of things to change and that I would be in great shape for recovery. She did offer a few suggestions. 

  • Go whole food plant based. So not necessarily 100% vegan, but reduce the amount of animal products and focus on non-processed whole food fruits and veggies and grains to the extent I can with the Bariatric diet. ✅
  • Reduce sodium. They recommend this for all their cancer patients but controlling blood pressure is important with compromised kidneys. My hope is I don’t lose any function with a partial nephrectomy, but I do have to take good care of them. I never ever ever want to be on dialysis.  My blood pressure pretty much runs low and with the lack of most processed food in my diet, I should be good. ✅
  • Add pre-biotic food and lots of veggies for probiotics. Gut health is still kind of a mystery to me too. Must do more research. She recommended additional flax seeds to my protein ✅ and adding food with live active cultures like fermented foods and yogurt. So kim chi, sauerkraut, kefir, yogurt, etc. And eat more cruciferous vegetables to the extent I can with my protein first rules and tiny tummy. ✅ She also recommended a probiotic called VSL#3. Need to research. May add that down the line. 
  • Keep the protein supplements going and stay at the high side of the 60-80 gram Bariatric requirement. ✅

It’s comforting to know I don’t have to change much and since it’s anticipated that surgery and removing the mass will be the cure for me with no follow-up treatment, life should continue as normal after I recover. They will follow me for 5 years which is typically the timeframe for recurrence. There’s a 5% recurrence rate based on what the surgeon told me — much better than the 80% I’ve read from the National Kidney Cancer association. Stupid Google. 

So it’s all good. I just want to put this surgery behind me. It’s going to be a long recovery. So I’m putting together my Netflix and Hulu playlists and nesting in the house. The worst of it will be over in a few weeks. 

Thursday we get to go down to SF for all of my pre-surgery tests and meeting with the anesthesia team. Those peeps need to be my friends. So another crack of dawn drive to the beautiful bay is in store in a couple days. Have I mentioned how amazing my husband is?

So there you go. Now I am off to make lists. 

The Referral

At the beginning of this journey, I had absolutely no clue about the cost or insurance. They sent the referral to the surgeon in November 2015 and I was promptly denied by my insurance company. I called to talk to the doctor’s office to see about self-pay or financing options. Um, $36k was a little hefty of a price tag. Getting denied this first time was probably the best thing that could have happened. It gave me the time to do my research to understand what I was getting into, and the starting point was talking to my primary care doctor.

She’s been along for the ride with me since about 2004. When I told her I was referred for surgery, she seemed encouraging. She thought with all of my metabolic challenges (more on that later) it might be a good option, saying it’s a tool, not a cure. That’s a phrase you hear a lot in the weight loss surgery community. It’s just a tool.

She started working with me and the weight loss center to pull together all of the documentation of my ongoing (and expensive) medically managed weight loss efforts, plus documentation of all of my co-morbidities that needed to be present for me to meet the insurance qualifications for surgery. All of this documentation was submitted, then promptly denied.

I decided to file an appeal following the insurance appeal process and addressed bullet point by bullet point all of their reasons for denial. Within a week, I was approved to take a 2 session nutrition class, which was biggest waste of time ever, but it was a requirement. By this time, it’s March. Within a few days of attending the last class, I got a phone call from my primary care doctor saying she had met the surgeon they would refer me to at a presentation the surgeon provided for the staff in the office. They briefly discussed my case and following that, I was instructed to go to a seminar to learn more.

I attended her seminar April 4 and learned so much more about the genetic and metabolic connection to obesity. I got enough information to change my desire to have the sleeve surgery to having gastric bypass, and I got into the queue for an initial consult. Until they have approval from the insurance company, no  appointment. It was within the week that I heard back that I was approved for the consult only and scheduled it for mid April.

The appointment was over an hour. I was able to ask my big huge long list of questions and Mike was able to get some reassurances about safety and complications (more on THAT later). We talked about my history, my knowledge of high protein, low carb living, all the efforts and work I had done. At the end of the appointment, she said I was a good candidate, waived the requirement to do nutritionist supervised weight loss, waived the requirement to have a psychological evaluation and set me up with a number of pre-surgical tests pending final insurance approval for surgery.

As I worked through each of the tests and requirements, the doctor submitted her statement of medical necessity and I was approved for surgery at the beginning of June.

I am exhausted just thinking about all that I had to go through.

The backstory

So someone doesn’t just out of the blue decide to have gastric bypass surgery.

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I call this my “before” picture. Honestly, I have been overweight since childhood, despite my parents’ best efforts to indoctrinate me to Weight Watchers at the age of 11. My weight gain was gradual over the years, and I swear all through college and beyond I was always on one kind of diet or another.  I actually have a stack of Weight Watchers passbooks from pretty much every city I have ever lived.

Talking to my doctor in 2009, I was connected with a weight loss center called Obesity Treatment Center (OTC), now the The Hernreid Center for Medical Weight Loss. I started that program, a Very Low Calorie Diet (VLCD), which consisted of protein shakes and one small meal a day.  I did great on that program. I lost 75 pounds which I managed to keep off for a while. I started running and did half marathons…then I realized the more I exercised, the harder it was to keep my weight off. I maintained about 50 pounds of the total loss over the next 5 years, going back on the VLCD several times over the course of time. My lowest weight was 150 pounds, which doesn’t even move me from the medical classification of Obese Class I to Overweight. At 4’11” — I don’t have a lot of room to hide a few pounds.

A series of events starting in 2015 set me on this path. I was a caregiver for my dad as his health declined in January 2015, I was stressed, I was tired, I wasn’t paying attention to what was going in my mouth, and suddenly I was back to almost 200 pounds. There is nothing more demoralizing than failing at weight maintenance.  I started back on the weight loss phase of the diet to try to get that under control, and of course, that program works and my weight was coming down again. When my father died in June 2015, that was a trigger for a free fall into a bad place.  I was stressed, tired, had horrible depression, was unable to sleep more than 6 hours a night, I wasn’t exercising, but I was still eating about 1,000 calories a day and gaining weight. My doctor at Hernreid told me that there was nothing else medically they could do for me, so she was going to refer me for a vertical sleeve gastrectomy.

I was devastated.  That made me feel even more like I was a failure. Let me just leave this here for a minute. This was really the start of the journey.

Where do I begin?

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I have an idea about what I want to do here, but how do you dive in to a story that has evolved over decades?

I am starting this blog as a departure from all other social aspects of myself, mostly revolving around my dogs. I want to tell the story of my lifelong struggle with obesity, a taboo topic. A topic that I have shared bits and pieces of over the years, celebrating the achievements and hiding during the setbacks. I’m going through something now that requires a lot of mental processing, and am hoping this will be a mechanism for that. And if I can help support or encourage anyone on their own personal journey –awesome! I’m hoping this will also bring some encouragement and motivation my way, too.

Here it is: on July 5, 2016, I had gastric bypass surgery.