Ground Zero

I started this blog 6 days after the discovery of cancer in my body. It continues through the challenges of our healthcare system, changing surgeons within days of surgery, through to being cured and beyond. Yes cured with no follow up treatement,  just be cautious with my one remaining kidney and promise to quit rugby .

I’m motivated to write these for a bunch of reasons. One, my thoughts and ideas and concerns and emotions have taken a journey over the past week and I thought it was interesting and might be interesting to others.   

The most important thing to me is that Nancy knows that she is the love of my life and that my daughters, Liz and Emily, also know that I am also madly in love with them. 

The one thing I have noticed over the various encounters I’ve had with friends and family around cancer, sickness and dying is that everyone deals with it differently and not everyone always recognizes that. So if I want to accomplish anything else with this blog, it is that I help others to recognize this. Enough introduction…the days follow.

Cured

Nancy and I show up for our canceled, then re-scheduled appointment. At this point, we’re just going to meet with a nurse to discuss the pathology report. That’s all we cared about!

As it turns out, once we arrive after a short wait, we are ushered back to an examining room. We, I think, totally only expect good news. Dr. Regan pokes his head in and say…I’m with another patient right now, I’ll be back in 15 minutes…but YOU ARE CURED.

So the next day of the rest of my life started with those three words. We learn in the consultation that nothing really will change for me except to be careful of some drugs that are hard on kidneys, all NSAIDs for example. Also, no contact sports where the remaining kidney might take an unfortutious shot.

So it it…back the un-sureal world. We are all thankful. Thankful for the docs, my luck in early detection, and the support of all of our friends and family.

Short chronology

 For those that don’t want the details…here it all is in one post!

12/12/08 Pathology report declares I’m cured. Literly. No follow up treatment required. Just be careful with one kidney. No contact sports.

12/11/08 Surgeon’s office calls to cancel appointment since surgeon is back in surgery. We call back and get in at 10:00am 12/12 to have at least a nurse give us the pathology report. If the tumor was totally encapsulated within kidney, I’m home free. If not, it’s spread and there is no viable treatment.

12/5/ Leave hospital for home with one less kidney

12/4 Surgeon has his own kidney stone surgery

12/3/ Surgery successfully removed kidney and tumor

12/2/ Surgeon calls to now delay surgery to 12:30 from 8:30am because he wants his #1 resident available during surgery in case his own kidney stone kicks in. We chat for 30 minutes about whether he’s up to it the next day or to push to the following week. We go for it.

12/1 Surgeon calls to move surgery up to 8:30 and to warn me that he has kidney stones and may have to cancel the surgery,  but hopes not.

11/22 8am pre-op physical at Suburban. I ask how many kidneys they remove a year…20. I’m nervous.  On way to meeting with surgeon, I get through to surgery scheduler at Georgtown for a 1pm appointment. See current doc. Practice questions on him. Head to Georgetown. Spend 40 minutes with #2 in department, then 45 more with surgeon. We book December 3rd.

11/21 Can’t get  into John Hopkins. Impossible to get through web site and phone system. Got names at Georgetown.

11/20 Recommendations come in to get the best surgeon, not just the first that showed up.

11/19 Back to work. Spoke with primary care physician 8pm who ultimately admited that he’d go to G-Town or John Hopkins, not the urologist he referred me to!

11/18 Bone and body scan shows negative for cancer. Heart tests also okay. Return home. Need to schedule surgery, successful getting in at Suburban 11/24.

11/17 Go to emergency room 8:30 am after passing out cold in the shower. Heart monitored, brain examined, ribs xrayed. CT scan shows tumor on lef t Kidney. Surprise! 8:00 pm hear from doc that kidney is 7 cm and entire kidney must be removed.

11/16 Play 80 minutes of rugby, break 2 ribs, but no real pain.

Feeling great…looking forward to pathology

It’s been one week + one day with only one kidney. Everything is normal. Just a few scars and the expected pain post op healing of these wounds.

Tomorrow I have an appointment with the surgeon to discuss any post op issues and the all important pathology results…do they confirm that the tumor was totally encapsulated…if so I’m home free with a prognosis identical to that of anyone that hasn’t had cancer. Apparently, having one kidney does not impact prognosis.

Just got a call from scheduling secretary that my doc is really sick (his surgery must not have fixed everything!) and has to re-schedule until January! I’M NOT WAITING THAT LONG! I ask about the pathology report and supposedly a nurse will call back.

Nancy’s having nothing of this…she’s right. I’m back on the phone with my best buddy at GTH, Charlene, who got my surgery scheduled to begin with. She agrees I need a post-op appointment with someone and obviously get the pathology report.

Charlene pulls through again. I’m back on for Friday morning with a nurse and someone who can cover the pathology report. The drama continues…

My first night at home…eventful!

Actually was able to check out of the hospital by 8:30 after being told that it might be around noon. Liz stopped by to say hi and ended up driving me home from the hospital. The little bumps in the road were not too much fun even with 2 perks in me…

Wonderfull to be home and have everyone here. I’m not too mobile, given my only excursions were down the hospital halls…gingerly.

Trying to stay quiet, so not much excitement… until near bedtime.

Gracy, our English Cocker, threw up lots of water and whatever she ate outside in Nancy’s office. 1st floor stinks…then Emily, Joel and Courtney arrive to the smell. WELCOME to our home! Okay, we deal with it.

They were coming down for Liz’s surprise BD party. Thanks to Emily and Mike for organizing it for Liz. Courtney’s pregnant, so that grabs center stage pretty quickly.

Off to bed…finally. I’m exhausted. Two perks and hopefully a good nights sleep. 2 minutes later, Gracie again empties her stomach on our white carpet. Cleaned up…poor Nancy, I’m not too mobile with 4 holes in my gut and 1 3 inch incision. 10 minutes later…again in the bathroom. OMG and I thought hospitals were difficult to get sleep in!

The good news is  we finally got to sleep…and the vet Saturday said Gracie was fine! Saturday night is Liz’s surprise party in DC.

1st new day

Hospitals. are for leaving, not sleeping. I didn’t get much sleep. The IPOD was more effective than the morphine! My belly has 4 wholes and 1 small bikini incision. I’m sore just moving in bed. Lot’s to bitch about, but you can imagine all of that. But it was an eventful day.

Nancy warned them as they were getting me to my feet for the first time, that I get dizzy when in pain (recall the earlier post that got my Cword found to begin with). I blew her off and promptly almost went to my knees! The Darvon they gave me did no good. Pain it was. I did end up walking down the hall to the glee of all. What an easy place to get approval!

Next up was getting the catheter pulled out. Men have it the best for insertion. As the surgeon explained, “oh we do that after he is under”. Boy was I relieved to hear that. So the assisting surgeon visits me along with a med-school student. You know where this is going! “Patty, have you ever taken a catheter out?” The rest is history as they say. Over a few beers I’ll tell you the whole story!

Next up for the day was liquid meals. Jello, Italian Ice and soup.

I had company all day long. Nancy twice, Liz and Emily all entertained me. Everyone, separately, said I reminded them of Grandmother (my mom), because everyone had seen her in a hospital/nursing home environment and my walk had less spring than mom!

Heading home tomorrow, Friday and we wait 10 days + for pathology to make sure I am 100% clear of the C word.

It’ gone.

I say good bye to Nancy at around 2:40. What a long day. Got here at 10am. Nancy and I read, chatted, managed through the various interviews. We even played pitch which we hadn’t played in years!

The operating room was unimpressive. When  I first was wheeled in I had no drugs, so I chatted with the team. The room looked like a extra large stornage closet (Didn’t see any Grey;s Anatomy interns hooking up!) Two very large parabolic lights, metal racks along the edges and me under the lights. A monitor with a test pattern. My CT scan on a large flatscreen.  Mood was relaxed except for me, a bit tense.

Then the anesthesiologist came in. He was mildly pissed that I had entered before him. And while we’re talking he injects something into my IV line which hit me. But i was so focused on what was in the room and learning…that I never assessed what the drug did mentally. I never got the: “count down  from 10″, he must have given me something else…next thing I knew, I was awake in recovery with one less kidney.

Dr. McGeagh spoke with me briefly saying everything went as planned. 2 hours later I’m wheeled into my room and see my family. Yeah! Nice to hear everything well. It was smiles all when Nancy, Liz and Emily saw me post-op. My smiles at waking up and pumped up on morphine and of course seeing them.

D-Day

Well no call from the doc early this morning, so we’re scheduled for 12:30. I have to be there at 10:30. Numb and anxious.

One day to go-continued

Yogi Bera said it best…it’s never over until it’s over. OMFG. Dr. McGeagh called tonight at 7:30. He had a good day. No pain. (read prior post). But, he now wants to move the surgery back to 12:30. Because…he wants a more experienced resident assisting in case his pain gets bad. OMG! Oh, and if he can’t get the OR room, he’ll call in time for us to make the 8:30 time. Not how I invisioned my last relaxing night with two kidneys.

But…everyone’s here. Emily arrived at about 8:30. Liz has been in and out during the day.

One day to go – maybe

Maybe? Yup. Dr. McGeagh called yesterday to answer some questions I had and to inform me that he has a kidney stone and is scheduled for surgery in the same operating room for Thursday, the day after he does me. He did warn me that if they have to do his surgery sooner, I’d be pushed to next week!

I don’t even know where to begin on this one, other than prepare for tomorrow, get as much work done as I can, hope he hangs on and doesn’t have an attack during my surgery!

2 Days to go

Okay…reality is seeping in. Spoke to a bunch of friends over the last few days and I must say I cringe when I hear: “Good luck”. Why…it implies bad luck is possible or that I even or my surgeon needs good luck. Yikes!

So what do I want them to say? NFI. On the other hand, it’s true meaning is…”I have to say something and I care…so: Good Luck.” Works for me!

Now to get on with the day. Last minute consulting deliverables and what to pack for the hospital and an inquiry about a clinical trial. Hmmm.

3pm: Just got a call, surgery has been moved up to 8:30 in the morning instead of 12:30. Oh boy maybe I’ll get lunch and dinner at Chez Sibley. I’m starting to get the pre-game jitters. Hope the surgeon isn’t!