The waiting is the hardest part

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Tomorrow is my consult with the urologic oncologist at UC San Francisco. I found out on June 6 I have kidney cancer, on June 7 that I was being referred to UCSF, and on June 19 that the appointment would be tomorrow. Waiting almost 3 weeks knowing you have an evil entity inside you is not fun. I’ve spent way too much time being angry about the wait, and even worse, looking up stuff on Google.

The good part of that is there is a lot of information, and much of it comes from authoritative sources. The bad part is I have some unique things in my health history that I have questions about and I’m just not going to find the answers online.

For example, the post-nephrectomy diet seems to be in direct conflict with the post-gastric bypass diet.  I have a consult with the UCSF nutritionist on 7/7, so I am sure I will get my questions answered, but am hoping I don’t have to do a lot to reconcile the differences with the nutritionist in my surgeon’s office. Some of the recommendations I have seen are really similar to the renal diet my dad was on with his dialysis. The irony of it all! It leaves me wondering what I can eat if I can’t have most of the things that are currently staples in my diet. Again…I just have to wait.

In the meantime, I have been making a move towards a more plant-based diet. I’d say 85% plant based.  Most nutrition recommendations I have seen lean towards an inflammatory diet, which is probably what all of us should be eating anyways. I’m sticking with my bariatric protein and following my doctor’s nutrition program.

My appetite has pretty much sucked but I have been eating enough to maintain at the low end of my goal range.  I lost 4 pounds that first week I found out, but that seems to have leveled off.

I worked from home all of last week, mostly due to the heat, and partially due to pain in my side which is either completely psychosomatic, a muscle strain, or stress.  I don’t know if my tumor is big enough to cause pain, but I guess I will find out that too.  I think the heat may have had something to do with it too.  I also took the week off of Kaia, as it just hurt too much.  My body was telling me to rest (which I did with plenty of naps!).

My plan is to get the whole story tomorrow, and then go from there.  My guess is it will take me some time to get scheduled for surgery, so I plan to go back to work to try to be a productive member of society and save my leave time.

I feel like today will be a long day but I am filling it with lovely things like laundry, journaling, meditation and some movement. And gratitude. I am so grateful to my friends and family who have been checking in and offering prayers and help.

Updates to follow…

Moving forward – an update

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I have a bit of an update. I am scheduled for a consult at UCSF next Monday. I’m glad to just have a date. I am completely nerding out about being sent to a facility that has modern technology: full access to my chart, all patient forms can be filled out online, I watch a 30 minute patient orientation video, and I have been sent probably over 200 pages of information to review before my appointment. I was also able to generate a list of questions for the doctor from another online app they referred me to. I have no doubt that the standard of care at UCSF is going to be beyond anything I’ve experienced so far.  Here’s hoping.

I plan to provide updates here from time to time and am still thinking about using Facebook groups to get info out to everyone (family and close friends).  Stay tuned as I work through all this…

Thanks to everyone for the overwhelming support so far.

Just call me #asskicker

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I am many things.

I am a rule follower.

I am a complete nerd.

I am a worrier.

I am a hard worker.

I am a wife.

I am a dog mom.

I am a sister, an auntie, and cousin.  And all the rest of those things.

I am a writer(ish).

I am a Kaia girl.

I am a gastric bypass patient, and therefore an obesity #asskicker.

Last week, I became something else when I learned that I have renal cell carcinoma.

I became a warrior cancer #asskicker.

Well, that all sounds super good and brave and kick ass, but the truth is I am terrified of what’s next.  And I am waiting to find out what that is.  I have been referred to the urologic oncology department at UC San Francisco and waiting to get scheduled.  And like Tom Petty says, the waiting is the hardest part.

So this blog started as my weight loss journey story, and I guess in a way, this is all part of the journey.  Had I not had gastric bypass, and my little complication in September, this would have never been caught. Or at least not until it was too late.  I am hopeful this was caught early enough that they can just remove it and I can move on. I have a bit of a rough road ahead but I am positive I will come out of this even stronger.

Meanwhile, if you see me crying in the corner, it’s nothing personal.

All denominational prayers are gladly accepted. I will be counting my blessings while waiting for the path forward.

Love to all.

And in the words of Syrio Forel (Game of Thrones), I say “Not Today.”

 

Practicing self-care through grief

One of the drivers for my recent lifestyle transformation journey was the death of my father on June 9, 2015. The minute the calendar changed to June, all of the feelings came rushing back. I’m in a funk. 

There’s nothing like facing some scary medical stuff that makes you realize your parents are gone. I think it’s an innate thing to want your mommy when you are sick. And since my mom has been gone almost 17 years (wow), I’ve instinctively always called my dad when I needed support. 

I’ve been thinking about him a lot lately, and what it would be like if I had known then what I know now. 

Self-care is something I did not understand until after my dad passed. I always put everyone’s needs in front of my own and I did not take care of myself. The last six months of my dad’s life, he was in and out of the ICU, I took weeks off from work at a time, and I completely fell apart. My nutrition was the worst ever. I have no idea what I ate during that time and I felt like crap. Comfort foods I imagine. I had major anxiety and couldn’t be around people.

I was constantly taking care of something whether it was medical appointments, grocery shopping, emergency room visits, wrangling caregivers, fielding complaints about him from his assisted living facility. Uh. Non-stop. 

After he died, I struggled with severe depression and anxiety. I was just not myself. I was stuck. It wasn’t until I was referred initially for weight loss surgery that I started researching life after surgery and the some of the methods for dealing with some of the emotional sides of this process. 

Journaling became a great outlet for all of these feelings and keeping a daily gratitude journal really helped to turn things around.  I have talked about all of my tactics for maintaining positivity. I am taking time this weekend to breakout that list and take care of myself through these next few weeks. I have more medical tests, doctors appointments and an ortho consult on the horizon. And I can’t call my mommy, but thankfully my brothers entertain me on the group text we have had going since June 2015.  

Peace and Love. 

Listening to Sgt. Pepper’s Lonely Hearts Club Band, which like me, is 50. 🎵🎶