Cancer

Pressing the reset button on life

Marilyn Clark3 Comments

Adobe Spark (8)

I am just over 2 weeks post-partial nephrectomy and starting to feel like a human again. I think getting back into a routine has been helpful. The past two months have been a blur full of so many emotions.

So let’s get the drama out of the way. I had my post-surgical appointment with my surgeon at UCSF on Monday (gosh, that was just a few days ago but feels like forever!). She walks in the exam room all smiles and hands me the pathology report and she says, “I have great news! It wasn’t cancer!” Imagine my dumbfounded look.  I have spent the last two months waiting to have a cancerous tumor removed from my kidney, so this was the best possible news, yet it’s still sinking in.  In my last post (almost a month ago), I mentioned that there was a 75% chance that my kidney mass was renal cell carcinoma, just like it said on my MRI report. Turns out after the pathology, it was something called an angiomyolipoma, which is a benign tumor made up of vascular, muscle, and fat cells. The short story is I didn’t have cancer, I don’t need to be monitored for cancer, and I’m basically done with anything over at UCSF!

I did, however, have a chunk of my kidney removed, so I still have a bit of recovery to do from that. No lifting anything more than 10 pounds until after September 3 (6 weeks post-surgery), so my workouts are on hold. The whole experience was a bit traumatic. The hospitalization was difficult. I was in so much pain, even for a few days after I was released, and then the pain meds made me dizzy and nauseous, so I discontinued those as soon as I could. I’ll spare the details but let me just say I no longer take the simple act of peeing for granted. Ugh.

So here’s the path forward: I’m still on leave from work for one more week but have been logging a few hours a day to catch up and figure out what I missed. I’ve been dealing with migraines for the last 10 days which has been a bitch, so I am off to my primary care doctor to see what’s up with that (since I’m out of my meds that I only get 12 of per month!). I have been working my way up to walking a couple of miles a day on the treadmill. I was so exhausted and realized I needed to push myself a bit to get my stamina back. It’s amazing how quickly you can lose it! I’m a bit out of sorts with food. Nothing has been sounding awesome and I’ve been slacking on food prep (I have an excuse, I think), so this week I will be doing some planning to get back into that routine too.

There’s so many lessons to come out of this ordeal. Believe me, I know how lucky I am and will never forget that. 

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The master plan

Marilyn Clark1 Comment

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 waiting is the hardest part

Marilyn ClarkLeave a comment

Adobe Spark (7)

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

Marilyn ClarkLeave a comment

Adobe Spark (6)

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

Marilyn Clark8 Comments

Adobe Spark (4)

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.”