Kidney Don't Fail Me Now!

I was thinking while waiting to see Dr. Pal last Wednesday. One year ago, I was mentally preparing for surgery. Hard to believe....

It's been a while since I've jotted down my thoughts. It's been 8 months since surgery and 6 months since immunotherapy began.  I've got be honest - the pain and discomfort of surgery is a distant memory. The every three week poking and prodding (blood work and infusion) is just matter of fact. I look at it as getting to take a day off work every three weeks. Heck, even the rash and itching is normal now. Where is my Triamcinolone? It's a little tragic - I'm taking daily life for granted again. Work goes Monday through Friday. Poker goes Friday and Saturday (okay, sometimes Sunday) nights. Sunday is for visiting mom, lamenting the weekend and psyching myself for another Monday morning.  On the other hand, there are times of stress and terror. Time between a CT scan and the doctor's call is especially unnerving. There's always some doubt for the day or two after a CT. An old running buddy who is a survivor mentioned to be that there will always be some st...

NOTE: I originally wrote this to post back on my birthday - 1/12. Today is 1/29. I got lazy and stored this away as a draft, but then forgot it was there!. So, I'm posting it today. Has it really been 5 months? Yeah. Kind of blows my mind. It's one week shy of 5 months since surgery for something I never thought I would need to face. The last time I left a note here was a couple of days after my first immunotherapy session. A lot has happened since: On the medical front: Two additional immunotherapy sessions with the only side effect being some itching. Blood work and labs that seem to show that my body is adjusting to life with one kidney. Creatinine is higher than normal, but trending in the right direction. Dr. Pal says this is normal. CT scans (done last Wednesday) that came back clean and showing no evidence of metastasis. On the life front: I've been back to work since November 18th. Meh. It was much more fun with the two "B"s - baking and boring. There has ...

Chapter 2 has started. Not that I thought I would ever open this book. Immunotherapy started on Wednesday. As I mentioned in the last post, I'll be driving to Duarte every three weeks for the next year.  The routine will be: Show up for labs (this time it was only three vials of blood) Visit with the doctor to look at lab results and discuss any active side effects Visit the infusion session for about an hour to get poked and prodded  The first session was uneventful. The only sensation was the feeling of something cold being infused into my arm. Hoping that portends things to come! Note: As I complete this write up 4 days after the infusion, I *think* I'm starting to have a side effect. Either that, or I slept in itching powder last night. Oh well. It certainly beats the alternative!

I've had to be patient entering the "next chapter" in my care. The chapter started with a transition from my surgeon (thank you Dr. Yamzon!) to an oncologist who specializes in kidney cancer, Dr. Sumanta Pal. Dr. Pal is the reason that we chose City of Hope in the first place. He has quite the CV and reputation as an expert in renal cell carcinoma. My initial consult was on October 11. We talked about the pathology report in some detail. The final pathology results is that I have a type of cancer called Clear Cell Renal Carcinoma. Apparently, I have some type of genetic mutation that is found in a lot of people who have this type of cancer. The prognosis is that there is a 30-40% chance the cancer will reoccur as Clear Cell Carcinoma in other areas of my body (lungs, brain, lymph nodes). The current standard of care for my situation is immunotherapy using pembrolizumab (Keytruda). Immunotherapy uses drugs to boost a patient's immune system to attack and destroy cancer...

It's been a couple of weeks since I posted because I've been feeling great! The surgery chapter officially closed on September 28th with my post surgery follow-up and had all the restrictions released. That doesn't mean that the book is closed though because, well, cancer. Chapter 2 is about to begin. More about that later. Now that I've had a little time to reflect, I wanted to capture some of those thoughts before I forget: Thank goodness for that annual physical: This started the whole thing. A marginally high calcium reading in a standard blood panel. I've only been doing this for maybe 5 years. Before that, I was a healthy 60 year old male. Right?  Take away : If you don't have an annual physical exam, I would recommend you find the time.  The initial shock :  I think this is normal. Getting a call from an oncologist an hour after a CT scan can never  be good news. When the doctor asked me "Do you have any questions?" I really didn't know how ...

So the final pathology report was posted to my chart. I read it. I'm not going to pretend to understand what it's telling the doctors. I do know enough to see that the report is a genomic sequencing (and I thought my Biology degree was worthless!). The good news is my surgeon called to discuss the report and findings. What I have learned: Kidney cancers are classified based on cell type. The classification determines follow up treatment. The challenge: The genomic sequencing of my cancer was inconclusive.  Hmm. Just my luck. But this is exactly why when I chose my provider, I wanted to make sure that I chose a comprehensive cancer center. We are fortunate here in L.A. to have a couple of them within driving distance (albeit a long drive).  What this means for me is that my surgeon has reached out to a kidney cancer specialist - Dr. Sumanta Pal. Just happens that he is one of (if not *the*) expert on kidney cancer. And not just in the U.S. - but the world.  I've made an ap...

Hard to believe it's been just over 4 weeks since surgery. If you would have asked me before last week, I would have told you that I wasn't "feeling the same" as before the surgery. That seemed to change in the last week. Or perhaps I've gotten used to what's going to be the "new normal" for me. Either way, I'm feeling really good and am ready to just chill for a couple of weeks before returning to work.  Let's see how last week's plan worked out: Wash my Car (including vacuum)   DONE. My car is nice and clean inside and out!    Cook multiple meals : DONE . My back still gets tired after standing form more than about 30 minutes, but as long as I give myself a little extra time, I'm able to get back to this hobby in earnest! Walk 20 minute round trip : DONE . Not only did I get out 20 minutes every other day, yesterday (9/19) I went for a little brisker 30 minute walk. I'll continue every other day for this week, and then target ev...

This is going to be a boring update this week. Checking in on last week's goals:  Wash my Car (including vacuum) : FAIL . Keeping this on the plan for this week.   Cook a meal : DONE . As mentioned last week, standing for a long period of time is still a challenge. I just need to plan an hour to cook a 30 minute meal. First meal cooked last week were blackened tilapia fish tacos with corn and black bean salad.   Walk 20 minute round trip : FAIL . I'm pretty close, but these physical activities remain a challenge. I'm going to try to get out early this week and see how I do. Establish long term care plan : FAIL . Pathology report is still pending.   Visiting our new grand daughter : DONE . She's beautiful!  Poker session : DONE . Put in a 5 hour session last Thursday. There is more to this than playing poker - it's the ability to sit in a chair for an extended period of time and focus on a set of tasks. It's kind of like what I need to do at work (yecch!). P...

It's been two full weeks since the operation. Time to check in to see how I'm doing versus last week's plan: Re-establish my RX regimen : Done . I'm back to my daily medication regimen. I did have an antibiotic added at my doctor's appointment last Thursday, but that's only for one week. Finish weekly grocery shopping : Done . I took Friday last week to do the weekly grocery shopping. Back on track.  Wash my Car (including vacuum) : Kind of Done . I dropped by the car wash on Friday. Intent was to wash my car and vacuum the interior. The problem? The vacuums were out of order! Keeping this one in the "In Progress" category. Cook a meal : Fail.  Some physical activities are still a bit challenging. In the case of cooking, standing for a period of time is tough because I can't engage my core to support my back. The result after a few minutes is a sore and tired back. I'm leaving this in the "In Progress" bucket and will try again toward...

Staples that were used to hold the incision together were removed yesterday - essentially two weeks post surgery. There were 30 of them holding the main incision together: I was a little anxious about the possibility of pain when getting them removed, but with the exception of three or four of the staples, the removal felt more like a slight pinch each time a staple was removed. I was kind of hoping that once the staples were removed, the irritation that I had been feeling would go away, but not the case. Everything itches so much! While at my appointment, I was able to discuss a couple other things that have been concerning me: Fatigue : I've been sleeping a lot this week. Not just at night, but taking 1-2 hour naps sometimes multiple times a day. Doctor (actually NP) said this is normal and to expect lower energy level for about 6 weeks. No concern. Freezing : As I write this, OC is in the middle of a heat wave with temps in the upper 90's during the day. In fact, at 8AM, it...

So week one is behind me and I'm still on the right side of the dirt. Being my first time at this recovery thing, I think it's going okay, but it's kind of like driving without a map. Eventually you get there (most of the time), but you don't always get to see all the sights along the way. I have in my mind what I'd like to accomplish. I need to put the "map" together. There will be two groups of activities on the map: Physical activities: These are the easy ones - getting back to the physical activities that got pushed to the side because of the surgery and recovery, and  Social activities: Over the past few weeks/months, I've put  a lot of activities on the backburner. Most were to avoid getting sick (even a cold would have been bad) prior to surgery. Anything related to social interaction - avoiding large groups of people (for us any family gathering is a large group of people), staying away from the grandkids (including the new one) - was basically...

A couple images from the NSFW file. #1: The original radiologists report said 17 cm. He must have been measuring across the tumor. Preliminary pathology is that it is malignant. There's a kidney somewhere in there. #2: The horizontal incisions were for the robot to do its thing. The long vertical incision is to get the puppy out. After seeing the size of the tumor, I now understand why the incision is so long.

It's been a week since surgery. I am feeling pretty good. Since this is my first time doing something like this, I'm not quite sure what the expectations are, but I'm getting in and out of chairs and bed, able to get up and down the stairs - basically all my ADLs.  There are two things I'm struggling with: Sleeping: I am (was?) a side sleeper. In my current situation, that's not an option. I slept (or tried to) for a couple nights on a recliner. I ended up pretty miserable both nights (sliding down the seat, ending up with a sore neck or back, etc. I know - big baby syndrome. Doesn't really matter though when I'm feeling miserable the next day. It's hard enough dealing with the stress and pain - it makes it harder when I'm mentally and physically exhausted. I slept back in my bed Wednesday night. I think I got in a decent 4 hours or so. Thursday night was a little better - getting somewhere around 6 hours of sleep.  It's always cold!: I know my b...

These were some notable milestones reached on Monday (8/22); Made it up the stairs Showered Shaved Made it back down the stairs Didn't take any pain killers Bowel movement (!!!!)

 Almost caught up here - just a couple more days. I think it was around 6 that I was carted out of post op and to a regular room. To me it was a maze of corridors and doors. I ended up in a single room somewhere. I remember my wife being there. I remember her asking me if I wanted dinner. I had no appetite. I'm glad she insisted that the nurse bring some juice and jello though.  I was pretty much out of it the rest of the evening. I was in some pain from the incision (at this point I didn't know how large it was). It was pretty obvious at this point there was no chance of being released Friday evening. I think my wife left around 8:30, and I tried to get some sleep. I would drift in and out of sleep, usually awakened by the RN or PCA to take vitals or give me some meds. The one other thing I remember was the longer the night went and the more aware I became, the more uncomfortable I got. I was wearing some socks and these inflatable leggings to reduce clotting. I had tubes lay...

The next thing I remember was looking at the clock. It was 5:30. What?  Before I go a whole lot further, I need to let you know that this chapter's memory could be influenced by the effects of anesthesia. My wife said she spoke to me on the phone and kept telling her I was confused. I have no recollection of a phone conversation with her. The nurse (I think it was the same person who prepped me early in the morning) told me my wife was on her way. I think I said something like "Well, that took longer than planned." I think he said yes, but that everything went well. Dr. Yamzon showed up. He let me know a couple things - the tumor was much larger than anticipated - I think he said 20 pounds. He also said that they had to create a large incision to get the tumor out. I remember saying something like "That explains the pain." (Hey! I'm blaming the anesthesia) At some point, my wife showed up, because she heard the same thing that I did from the doctor - "T...

Last I wrote here was that all systems were go. I posted here about an hour after getting the call back on the 18th. We settled in for dinner (a rosemary grilled chicken and peach salad) before packing and heading the 55 miles to Duarte. We had reservations at Hope Village, the on campus hotel for patients and their care givers (no - the public can't reserve a room, and the family can't come for vacation). I settled in for a pretty restless night of sleep. I think the only person who got less than me was my poor wife. I was up before my 5:15 AM alarm went off and showered as instructed. Okay to use soap and water, but nothing on my skin afterwards (no shave, no deodorant, no make up). About 5:45 we started our short walk to Helford. As always, we were greeted by the most courteous staff and sent over to the waiting area for admitting. We sat for maybe 5 minutes when I was called. All the paperwork was ready - including my wife's contact number, email, etc., so they could ke...

The call came in at 3:20 PM today. I jumped when I saw the 626 area code. I need to show up tomorrow at 6AM at Helford. No eating or drinking after midnight.  It's real.

Covid test was negative. Check. Today is about waiting for the call to let me know what time surgery is scheduled for tomorrow. I'm feeling some anxiety this morning. It's the fear of the unknown that's weighing on my mind. Of course, if I were logically thinking about this, I probably have a greater chance of being struck by lightning, and there are no storms in tomorrow's forecast. One thing that I need to do today for sure is to reset some recovery goals. I feel like earlier this month, I was way more focused on recovery goals. Then again, the plug got pulled a couple days before surgery. My defense is I'm further along in the process this time than I was a few weeks back. This time it appears to be real.