adrenal gland

Microwave Ablation Completed Despite Blood Pressure Spike

I have two new best friends as of this past Thursday. Dr. Nishant DeQuadros and Dr. Mark Pinosky.

Nishant is an interventional radiologist. He’s young, engaging, handsome, articulate and well trained. Here’s where he was trained:

Henry Ford Hospital/Wayne State University
Residency, Radiology, 2006–2011

Brown University
Fellowship, Vascular and Interventional Radiology, 2011–2012

Case Western Reserve University School of Medicine
Class of 2006

Mark is an anesthesiologist. I took an instant liking to him as he talked. He seemed focused and knowledgeable and because he is chief of the anesthesia group at Columbus Regional Health and is responsible for several offices in other states. He spent quite a bit of time with me before the procedure I had on Thursday morning, explaining what types of things they’re preparing for in a microwave ablation of a renal cell tumor in my left adrenal gland. He is board certified and licensed in several states. Here’s where he was trained:

Medical University of South Carolina
Class of 1989

Internship and Residency
Georgetown University Hospital

Thank God in heaven that my world intersected with these great doctors at just the right time. If not for them by my side on my case Thursday morning things would be very different in my world today. If I had a world at all.

Let me take you back through our decisions that led us to deciding to undergo microwave ablation to remove the renal cell metastasis in my left adrenal gland this past Thursday: My CT scan from July 22 showed that a tumor in my left adrenal gland had started growing again 23 months after I started a drug, Votrient, that kept the tumor at bay. I took the terrible drug for 15 months and stopped it in January of this year, after it became apparent that the drug might kill me. It robbed me of my dark hair, 100 pounds of my flesh, my taste buds, my favorable vomit streak and visited upon me some other even more awful things that I’ll spare you from reading.

Dr. Pippas said at the meeting after the scan that he felt a surgical option might be the route we should take. I visited with Dr. Andy Roddenberry at St. Francis Hospital and he gave us a good understanding of how serious this surgery would be: Open incision of 10″, 6 days in the hospital and a full six weeks of recovery. A lot of pain and a real solid blow to my already compromised immune system.

A few days later, after a lot of thought, Andy Pippas called me on the phone and said he had a change of heart about the direction he had advised me to take. He felt that a big surgery shouldn’t be done at this point. It was better to find a less invasive procedure that could take out the tumor, not negatively affect my immune system and still leave us with surgery as a next step if we needed it later.

About that same time, Dr. Granville Batte called me and told me about Dr. DeQuadros and his skills as an interventional radiologist. All my research told me that this young doctor had the chops to do this procedure. That he was highly skilled and he was the right person to choose to do the procedure. We went to see him and Jill and I both felt like I was in good hands with him. So we scheduled the procedure for Thursday, August 28 at Midtown Medical Center.

I had never met Mark Pinosky until Thursday morning, when he appeared at my bedside to discuss my case prior to surgery. I’m thankful he was there and all his excellent training was brought to bear to save my life when my adrenal gland sent my blood pressure into the stratosphere right in the middle of the ablation procedure.

The CT-guided microwave ablation takes place in a CT suite, not in a surgical suite. I was placed face down in the CT machine and Dr. DeQuadros used the CT to guide a needle-like probe into the tumor. In a discussion on Friday morning in his follow up visit after the procedure, he told me that he needed a four-minute burn to kill the tumor. He said he inserted the probe into the adrenal gland and started the burn.

My adrenal gland did what it does and ramped up my blood pressure and the procedure had to be stopped multiple times while efforts were underway to drive my blood pressure down. Dr. DeQuadros ran a central line into a vessel behind my knee that gave them beat by beat access to my heart.

They were able to deal with blood pressures that went as high as 300/200, the corresponding bottoms that would have followed with the introduction of powerful drugs to drive my blood pressure down, and still get the procedure completed. Both of these great doctors have promised me some time to talk about the procedure for inclusion in this blog. I want to be sure to capture my thoughts and the thoughts of the doctors about this promising minimally-invasive way to deal with RCC mets in the adrenal gland.

I’m writing this from memory and from audio recordings of my talk with doctors after the procedure, so I’ll likely revisit this after I have a clearer view of how the procedure unfolded. But, regardless of my description, the medical talent with me in that room on Thursday was brought to bear on a difficult situation to what will likely be a good outcome. So thankful to my God, my medical team, my family and my prayer warriors.

Needless to say, I’ll be in my pew this morning at St. Matthews in-the-Pines Episcopal Church. I have much to be thankful for. Please excuse this rambling post. I wanted to get something out and I don’t think I’ve been as articulate as I try to be in this space. Just wanted everyone to know that I’m OK and hopeful about what lies ahead.

Drug Side Effects Still Taking a Toll

On the surface it seems we have been successful in relegating my case of stage IV renal cell carcinoma (kidney cancer) into acting like a chronic disease. Something like diabetes. Something you can live with and keep at bay with medication. It doesn’t appear to be actively trying to snuff me out and thankfully it also appears that the oral chemotherapy I’m taking daily, although it is making me very nauseated and giving me constant diarrhea, has done a number on at least two tumors on my left adrenal gland. The tumors are gone!

Jill and I met with Dr. Andy Pippas yesterday morning. Except for a slightly elevated billirubin count, my lab work is exceptional. The higher than normal billirubin is a direct result of my taking the Votrient, which is an oral chemotherapy drug called a tyrosine kinase inhibitor. Our discussion with Dr. Pippas went toward the shocking weight loss I’ve experienced — now almost 100 pounds! He looked at my chart and proclaimed that I’d lost about 10 more pounds since I last saw him just 4 weeks ago. He is concerned, as are we, that I’m really starting to lose muscle mass and tone.

We talked about my nausea a lot during this visit, I guess because it has gotten worse over the past month. I am really having a difficult time eating almost everything EXCEPT Vietnamese food. I’m surviving on a dish at Uptown Vietnam Cuisine called hu thieu, which is a pork broth based soup, similar to pho (pronounced /f ?/). It fills me up. It makes it happy and it is a very healthy dish, according to Beth Bussey, my nutritionist. Other than that meal, I am finding it very difficult to eat a single other thing without feeling nauseated. For a former fat foodie, this is really quite difficult to take.

Dr. Pippas prescribed a timed-release patch containing a drug called ondansetron (trade name Zofran), and the idea was for it to provide me with a constant infusion of the drug for a solid week and keep my nausea at bay. I applied the patch yesterday afternoon and so far, I have been nauseated almost every waking moment. I’m not sure if I’m experiencing a “breaking in” period or whether there is something else going on, but I’m at the edge of a dry heave all the time. So far, today hasn’t been much fun.

Dr. Pippas also told me about another product which is a wristband that gently stimulates the median nerve in the wrist and signals the “vomit center” in the brain not to fire. Who knew the brain had a vomit center? I am doing some research on that product now and may add it to my anti-nausea regime to see if we can get me back to a better place.

So, all things considered, I am in a pretty good position right now for someone with stage IV cancer. I’m not in immediate danger of dying. I’m able to enjoy my family and friends. And, even though I have a real intimate relationship with my toilet, I can enjoy and fairly respectable amount of good time during a day. As I see it, things could be a lot worse. If this is all there is, I’m happy to have it.

The other news is that I’m feeling like I might be able to write again and I hope that will translate into my being more communicative in this blog. Time will tell. In the meantime, I hope you have a fabulous Christmas with your family and friends. If you celebrate other holidays at this time of the year, I hope yours is a great one! For all my brother and sister cancer sufferers out there, hang on, there’s a better year coming.

Tumors Continue to Shrink

The last time I posted was March 8, 2013. I’m sorry for that. That is one thing about cancer that no one can prepare you for — you are never really ever right in the head again. I know, “How can you tell?” I know many of you are asking that question right now. Because of my transparency (at least until March 8) my open-book life has left open for all to see that I am, on a good day, not that right.

He ain’t right.

I love that we live in a place where you can say that about someone (or yourself) and people know what you’re talking about. A hell of a lot of water has gone under our family’s collective bridge since March 8. We lost two dear members of our family animal pack. Our Golden Retriever, Dixie, was killed by a logging truck and I buried her badly ruined body. I cried a gallon of tears standing there with a bag of lime and a shovel. By myself, because I wanted no one else to have to see the carnage that was once a beloved member of our family. That same week, Azrael (Azzy), who lived on our farm for at least 15 years up and left. She likely want off to die. Cats will do that. They want to spare the ones they love the trauma of their departure.

If you’ve noticed a tender spot in our latest issue of Columbus and the Valley on our stance on rescuing animals, you’d be right. We have recently rescued a beautiful five-year-old Golden Retriever we named Izzy and a big orange male cat named Garth. These new guys have joined our other inside cat, Zoey, and our only remaining outside cat, Furry Football, and the pack is back whole again. I lost the battle of having indoor cats. I thought (I just thought) I didn’t want them living inside. Jill was of the other opinion. She won that battle, but oh, so did I! The delicious goodness of being able to hug a sweet cat and to have them purr and look at you just like you were the one who hung the moon is therapeutic beyond any possible measure. Physical pain can absolutely melt away and emotional pain is soothed as if real medicine just kicked in. There is real healing in the eyes of a pet. In case you didn’t know that, you know it now.

That animal has chosen you to be its human. They are all in. They’re job is to be your best cheerleader. They’re unfailingly in your corner. Well, at least the dog is that way. I’ve really confirmed over the past few months that we actually work for the cats. They used to rule the world and they’ve never forgotten it. But believe me, if you don’t want your heart invaded, if you don’t really want to fall completely in love with a purring pair of eyes (and the occasional claw) don’t give a cat an inch! They are incredible animals, easy to keep, and impossible not to love, if you get to know them. For those of you who either don’t like or don’t know cats, you’re not living to your full potential. I hope one day you’ll come around and know what the rest of us fully-evolved people know.

One more thing about rescue animals. During this sad time of loss and subsequent discovery, Jill and I had the opportunity to visit on several occasions our Columbus Animal Care and Control Center. Wow, is all I can say! The people there are dedicated, kind and attentive. The animals are well fed, well cared for, clean and loved. I can’t say enough good things about our experience in adopting Izzy. Please use them if you’re thinking about getting an animal. But be warned, sit on your hands for at least one trip out there on Milgen Road. There are some sweet faces out there and they’re all saying, “please take me home!”

Now, for what you came here for, here is my belated health update. My last post (March 8) I reported that the daily 800mg Votrient dose was working. The almost 4cm tumor on my left adrenal gland had shrunk by about 50%. And two small tumors in Strainer (my remaining right kidney) were less noticeable. During our visit with Dr. Andy Pippas at the John B. Amos Cancer Center, he let us know that my scans of last week showed continued, significant shrinkage of the lesions. The adrenal nodule is only about 5-10% of its original size and the two small spots on Strainer are almost entirely gone! So, the white hair, vomiting, lack of appetite, sensitivity to the sun, itchy skin and chronic diarrhea now seem to be a small price to pay for stabilizing this cancer, giving me more life to share with my family and friends and more time to make my mark on a place that I love.

I have lost a frightening amount of weight. About 70 pounds, representing over 26% of my body weight, has come off due to the lack of appetite and my inability to keep food down. I’m meeting with Beth Bussey, a wonderful nutritionist at the JBACC, and we’re plotting to find foods I can eat that I can properly digest. The big thing is my appetite. I would slap the smile off Jim Morpeth’s face for a Country’s barbecue sandwich! But, I wouldn’t be able to eat it without an almost immediate refund. Recently, we stopped by the new Meritage on First Avenue in UpTown for lunch. Chef Ashley Simmons Parsi-Graciani goes to great lengths to whip me up a vegetarian delight that hits my sweet spot (whatever that happens to be in that given moment). More often than not, when I finally sit down to eat, the nausea sets in and I just can’t bear the thought of putting something in my mouth. It is really frustrating, and the dramatic slide of my weight is becoming a concern to my caregivers.

It is a shame that marijuana is an illegal substance. I left my marijuana doctor office today with a prescription for Marinol (http://www.marinol.com/). This is a synthetic rendering of THC, the active ingredient in marijuana. It should banish nausea and also stimulate my appetite. We’ll see. It is shameful that there is a naturally growing herb that could bring relief to people who are suffering with cancer, aids, glaucoma and other serious chronic conditions, and that we can’t legally acquire it. Boy, I never thought I’d be putting myself out there to be an advocate for legalizing marijuana. But I’m there, folks. It just makes me angry that this good medicine is out there, but I can’t have it. I’m not expecting to see much public feedback on this one, but I’m curious about what people think about my comments here on this volatile subject.

I’m going to weigh in here on another volatile subject. At least, some of the local media and the nutbags — the regular 20 or so posters — who have tried and convicted MY DOCTOR, Dr. Andy Pippas for a alleged boatload of billing infractions. I know the media has a job to do. I do that same job every day. But, I really don’t like the tone that so many people have taken against a man who has lengthened lives and provided healing to thousands. I had him look me in the eye today and tell me exactly what I needed to hear to expend whatever personal energy I can to be a loud, proud member of Team Pippas. I am walking around today because of his great care and the care of the members of his John B. Amos Cancer Center team. I’ll be happy to talk to anyone about my experiences under his care. But if you want to engage me and just run him down, I’ll cut you off at the knees.

I hope to be able to keep a steady writing pace. There is much good going on in our lives and it makes me happy to be able to share it. I’ve said a lot in this post. There’s more where that came from.

Votrient is Working

Jill says I’m obsessed with my hair. That I talk about it every day. Sometimes several times a day. It is just so interesting to me, I guess, that I’m seeing such changes in my hair over such a short period of time. And, it is not only my hair that is doing some weird stuff.

I have no cuticles on my fingernails. The cuticles have receded and sort of folded in on themselves, creating a little trough at the bottom of each of my fingernails. I tried looking in there. Nothing really going on, it appears.

Dr. Pippas put me back up to the full 800mg dosage of Votrient, starting on January 17. So, for about six weeks, I’ve been getting adjusted to the side effects. The mornings are tough. I’m most nauseated in the mornings and then in waves during the day. With my tastebuds out of commission, I’m eating much less and have enjoyed a hard-fought 30-pound weight loss. I expect to keep dropping a few pounds here and there, because I just don’t enjoy eating right now.

I want Jamie Keating to know that I’m dying to come to Epic for dinner. I know he’s been wondering why he hasn’t seen our faces in his new place. When foie gras tastes like Alcoa aluminum foil, it doesn’t make sense to eat foie gras.

I’m ready to talk about the pink elephant in the room. For over five weeks now there have been no new posts to my blog. Speaking of epic, I’m in middle of what I hope is the end of an epic writer’s block. There is so much going on in my life that I just haven’t been able to get my mind clear to write. In the midst of all this cancer stuff, I had an event in my left eye that sent me to see local retina specialist, Dr. Nicholas Mayfield, at West Georgia Eye Care Center. Thankfully the tiny leak of blood in my eye didn’t rise to the level of retinal tear. I still see floaters and my eyesight seems to have changed to the extent that my reading glasses aren’t so helpful, further impacting my comfort in using my laptop and making me less able to be in the mood to write.

But I finally have some good news to tell, so I’m powering through the blockade to tell it. The Votrient is working for me. The formerly 4cm tumor that is in my left adrenal gland is now just under 2cm! That is about a 50% reduction in the length of the tumor and equates to nearly a 75% reduction in volume. Dr. Pippas is thrilled with these results. Naturally, so are we. I guess the broken tongue, having to sleep with a vomit bucket next to the bed, white hair and diarrhea have begun to pay off.

Here’s what Dr. Pippas says. He feels like the Votrient will give me at least 18 months to two years of disease control. The Xgeva, the monthly injection that I take to keep a metastasis from setting up in my bones, and the Votrient will buy me some time while we wait for something that could give us a cure to come along. It is not the best existence, but the discomfort the drugs have brought into my life is WAY better than runaway disease. By a mile!

I am trying to reinvigorate my desire to write. Please be patient with me and continue to keep our family in your prayers.

Looks Like A Go

This morning I reported early for the 9:30 stress echo test. I had just sat down in the waiting room and plugged in my iPad and Matt Baum popped his head out of the door to the treatment area and called my name out like I was being introduced for a comedy roast. Mmiiikkeee Vvennabbllee! Turns out his cheery demeanor and his cheerleading abilities would be important to me once they introduced me to the treadmill.

I haven’t ever had one of these tests, so this was all new ground for me. Here’s how it went: First, you lie down on a hospital bed and they get a resting heart rate and blood pressure. Then I was asked to stand up and Matt went at a double handful of spots on my ridiculously hairy chest with a safety razor. After he created a pile of hair — enough to build a complete toupee for Howie Mandel — he filled those freshly shaved gaps with stickers that contain contact points for the wires he plugged in.

By the way, Matt Baum went to Shaw High School in Columbus! I told him that I had a surprise for him when the test was over (if I lived through it). He was interested in what was going on with the Chattahoochee and I whipped out my iPad after my test and wowed him with videos of the Thursday and Friday rafters from last week. He was stunned. Wants to come back and see it for himself.

So, back to the stress echo. Once I was wired up, another technician came into the room and did a cardiac ultrasound. That wasn’t much, except for the goo that was left on my skin. Once that part was over, I was asked to stand up onto the treadmill. Matt explained that he would be asking me questions about how I feel during the test. I was asked to tell him about how much exertion I was feeling (on a scale from 6-20) and how I felt I was breathing.

Then they turned it on and I started walking. The plan is to push you to your maximum heart rate and really get the heart pumping. He predicted my maximum heart rate would be about 161 beats per minute. I made it to 162 before I felt like I just couldn’t breathe. Then I was plopped back down on the bed and underwent another ultrasound of the heart.

I think I must have done well because they were both complimentary of how things went. Dr. Michael Morse will review the stress echo study tomorrow and my insurance will be checked and if all looks well, we should be good to go early next week.

This afternoon, we met with Dr. Morse. He just left the John B. Amos Cancer Center last week for a speech he made to caregivers there. He is exceedingly knowledgeable about certain types of cancer, including melanoma. Melanoma is an immune system cancer, as is renal cell cancer.

He answered all of our questions. We’ll start the therapy on Tuesday. We’ll check in around 1 p.m. and do some paperwork and some labs. They’ll settle us into the intensive care step-down room (where Jill will be allowed to stay, too) and they’ll put in a picc (peripherally inserted central catheter) line. The picc line will deliver the HD-IL2 straight to my heart, where it’ll disperse on a mission to wake up and piss off natural killer cells so they can seek out and kill this cancer.

Here is the plan: We will likely come back home on Sunday, September 9. After a few days to recover, we’ll report back to Duke on Monday, September 17 for five more days of HD-IL2 infusions. Then back home on or about Saturday, September 22. That will constitute round number one of a possible three or four rounds. They will continue infusions until either A) I throw in the towel, or B) I’m in danger of developing life-threatening complications or C) I become delirious or exhibit bizarre hallucinations. The goal is to get as many as 14 doses per five-day stay.

I like Dr. Michael Morse a lot. He is extremely bright and is easy to talk to. He says they’ll exact an agressive application of this therapy, but that they’ll stop short of forcing me into kidney failure or something worse. Now that I think about this, this therapy is much like that stress test. Go until you can’t go any more is the plan.

They will do CT scans about a month after the start of the HD-IL2 therapy. If there is tumor shrinkage, round two will be ordered. If there is stability, round 2 will be ordered. If the tumors are larger, I’ll be declared an HD-IL2 non-responder and I’ll immediately go on one of the TKI therapies and prepare for surgery to remove the left adrenal gland and some sort of cryotherapy (or other ablation treatment) to deal with the two small tumors in Strainer.

We’ll leave to come back home tomorrow morning and we can’t wait to see friends, family and co-workers!