Mid July was fast approaching and we started to get mailings from UPMC. These were general overviews of the Cancer Centers and all the methods of treatmens available. Surgeons, Oncologists, Radiologists, and just hosts of other medical Drs and technologist were listed.
Kim's research had brought her to Dr. Rodney Landreneau. He was a thorasic surgeon specializing in oncology. He was also listed as a Professor of Surgery as well. Whatever listing guidelines they used to determine such things had him at #3 in the nation. He would be my "primary" Dr. through this. He was schooled in Dallas, doing his Surgery Internship at Parkland Memorial Hospital in Dallas.
....Have I mentioned that I am one of the biggest Grassy Knollers alive today? I have watched 2 and a half years of JFK Assassination shows, read 2,134,344 articles, and 11,239 books on the Kennedy Assassination. My surgeon undoubtedly had worked in the same ERs that had handled our wounded President. Can this be true???
Dr. Chan, head of UPMC's radiology department would be my radiologist and Dr. Osborne would be my Oncologist, another eminent name at UPMC.
Wow. These were some heavy hitters. Hey Toto, we're not in Ellwood City General Hospital anymore...
July 15th finally came and Kim and I set out to make my 9:00 appt. I was told that I would have an EKG, a blood test (Did I mention I hate needles?), and a chest xray. I was going to meet with "My team" as well, so I should expect 4-5 hours......lunch is available in the cafeteria or the Deli.....
Passavant is a very good sized medical facility, hundreds of beds, very intense and complete diagnostic centers, and of course, the Cancer Center. We registered on the main floor and were told to take the elevator down to the Ground Floor.
The elevator doors opened and I was greeted by a wall sized sign "Welcome to the UPMC Cancer Center".
That was a cold splash of reality in my face. I signed in with the extremely friendly staff at the main desk and was asked to have a seat down the hall and our "team" would be meeting with us shortly.
Our waiting area was just outside of the Radiology department. During the 20-30 minutes we were sitting there, we watched outpatients come in for their treatments. They looked like you and me. Nothing like the Hiroshima victims I expected to see thanks to my mind's eye. Thank God for small favors1
Around the corner came Maria, she was Dr. Landreneau's Physician's Assistant. She introduced herself and invited us into a private exam room in the hall. She went on to explain that I was going to meet with all of the Doctor's Assistants today, and then with the Drs. They would review the CT and MRI DVDs I have brought with me. They would consult with each other and spell out a general gameplan of my treatment. The tests I would go thru today were preliminaries to the diagnostic tests I would face in the next week. She then did some vital signs, weight, blood pressure, and the 12 page medical history paperwork. Once that was done we were left alone. Maria had told us that Dr. Landreneau may be delayed as he was in surgery so we may meet with other team members first.
Kim and I looked at each other. We both just said "Wow" with our eyes. This was going to be medical care unlike anything we had ever been part of in our lives.
First we met with an assistant from Dr. Landreneau's office, Kim. She went over some generalities of surgery in regards to my tumor. Now do remember we have yet to really know that we are dealing with cancer. So, with that in mind she touched on tests to determine that. First would be a CT Scan guided needle biopsy(Did I mention I hate needles?). It sounded as though I would be OK with half of that procedure. That would be the first definite determination of cancer.
Second would be a PET Scan. That stands for positron emission tomography. I would get an IV (did I mention I hate needles?) that had a high radiation/short half life glucose liquid. Cancer tumors have a high metabolic rate and would absorb the sugar, along with the radioactive marker. That would then show where the tumor was and if it had spread.
Third would be two "scope" procedures. This meant I would be nighty nite, something I always cherish.
NOTE: The Mark Campbell definition of "Relative Medical Procedures" or RMP states that the chance of you receiving sedation for any given medical procedure is directly inverse to how upsetting the procedure sounds...SEE ALSO: "you may experience some pressure".
These would be a Bronchospomy and a Mediastinoscopy. You get an incision and a scope is inserted to check bronchial areas and then the Media one looks at your windpipe area. (Very basic descriptions of something you sleep through) these would also look for any other tumor growth or issues.
While I am sleeping through these, what a perfect time to put in a Hickman Port.
This is a little plumbing fixture they place into a blood vessel, about the size of a quarter, that will sit just under your skin, in my case just about on my right collar bone. These are used to allow an IV line(did I mention I hate needles)to be placed into the port with virtually no pain (see RMP above) when you go for chemo or any other time an IV is needed.
Well now, this has been a lot to think about so far...
Enter Dr. Landreneau...
He looks to be of that awkward age...maybe forty, maybe fifty. His light hair confuses the issue, but he looks to be in great shape, as much as you can tell of someone in surgical scrubs. He greets us with a strong handshake, a warm smile, and just the slightest hint of a bayou-ish accent that would come from his Louisiana background.
First thing he says is "Mark, for the next six months all I want you to do is concentrate on getting better. I am going to go in and get that tumor out of your lung. We're going to leave behind a small piece of mesh that has tiny radioactive seeds in it that will kill any remaining cancer cells. Normally we would do this first, but in your case I would favor we do some chemo along with some radiation because of where your tumor is. It's right at an artery and a nerve. the chemo and the radiation will shrink the tumor's size. (at this point the MRI had shown it to be 2cm X 4cm, or about 3/4 of an inch by an inch and a half..about the size of my thumb to the first knuckle) It's touching the nerve is what is going to save your life. If you would not have had that pain in your shoulder, the tumor could have spread to a point that nothing could be done. But for now, let's get these tests done that Kim was telling you about so we know what we are dealing with. I know this is so much to absorb but can I answer any question?"
I was glad he was going to let me ask questions. I wanted to know about chemo since that looked like it was going to be sooner than later. I started to tell him about how my first Father in Law had died on day three of chemo back in 1979....
"STOP RIGHT THERE MARK!!!" He actually looked like he was angered a bit. "Do you have any idea how much these treatments and this science changes month to month? You just can't even THINK about something from 30 years ago! Chemo was in its infancy back then and you don't really know your Father in Law's condition. That was black magic back then. And something else, I want you to stay off the damn internet!!! You will only scare yourself because there are only two kind of stories on there...bad and worse. Most importantly, everyone's different. When you have questions, bring them to me, or to Maria, or anyone else on your team. We are the people that will get to know you and your individual case and circumstances. What happened to Aunt Phyllis or Uncle Bob just does not apply to you! We're going to get that out of you and cure you. You just have to help and work along the way."
He sounds more like a superhero to me than a doctor.
So I had to ask him......
"Dr., my wife Kim did some research online of your bio and it said you interned at Parkland Hospital." A smile started to come up on his face..."Would you have been there when some of Kennedy's Dr.s were there?"
"Oh my Mark, we're gonna have to talk! I studied under all of them! There's so much more to what happened in that Trauma Room than people know! And then there's the Oswald New Orleans connection!! I grew up there and lived thru the Garrison stuff..."
On and on he went recommending books and teasing me with tidbits. He promised me that we would talk throughout all of this and it would be great fun comparing notes....
Next: Did I mention I hated needles?
First up Monday morning was the needle biopsy. There has never, ever, been anything that sounded good about "needle biopsy." Even though I was 95% sure that I was dealing with cancer, there was the chance that it was benign. Even though Dr. Landreneau had explained that just because I smoked did not mean that cancer would be the result. He spelled out that cancer could be caused by lifestyle (smoking, diet, etc), or it could be the result of environment (think Love Canal in Buffalo, or even Western PA with all of its former heavy industry), and then there was genetics (it runs in your family), I could draw from all three when push came to shove.
Kim and I arrived and registered with the Imaging Department and we were taken to a small unit with the now common glass enclosed rooms where you can change, lay in bed, get IVs (gulp). A couple of nurses and technologists came in, took vitals, ask me for my birthday (a new ID verification emphasis) and had me slip on the omnipresent cotton blue and white hospital straight jacket gown. An IV for me this time was going to be some king of contrast fluid that would help highlight the tumor area.
It was explained to me that I was going to go into an imaging room with a CT scanner that would be used to pinpoint the location of the tumor so they can number 1, do the needle biopsy, and 2, mark it for future reference when it came time for radiation if it was to be needed. Besides a little sedation in my IV, they were going to give me novacaine in my shoulder as well.
So, in I went to the CT room and I laid down face first on the table. I was introduced to the very nice woman that was going to be doing the procedure. She went over the procedure again and assured me that it was not going to be as bad as it seemed. I quipped "I'm sure you're probably quite used to these by now...forgive me, I'm a newbie..." Kinda broke the tension that was all mine.
So first they introduced the contrast thru th IV an into the CT scanner I went. They stopped the table from moving after a few inches and came in and made some marks on my back. They repeated this three times. Now it was show time.
First came the numbing drug. "Mark, this is going to feel like a big bee sting and then may burn for just a second or too." I just took a breath in and sure enough.......Let's just say she must have grown up around a lot bigger bees than I did! "Okay now, we'll give it a few minutes to work."
The actual needle biopsy seemed much less the deal than I thought it would be. She made three pokes in my shoulder between alignments of the table, the patient and the CT scanner. One time it felt like she may have hit a nerve causing kinda an electric sensation. One of the nurses had been having me hold her fingers and when I involuntarily jerked because of that, she made the suggest that I should maybe get a little more sedation. (God Bless you RN Linda!) She gave my IV port an injection and we started back in a minute or so, and ho pain at all. I asked Linda what she gave me and she smiled and wrote something in my hand. I looked later and saw "Dulaudin (sp)" Yummmm.
The Dr. was then done with me and they had me roll over to make the layout marks on my upper chest, kinda like little tattoos.
Test one done. And you know what? It was the fear of the unknown! But then again it was kinda unsettling when they told me the 20-30 minute procedure was going to be followed by 2 hours of rest and an x ray, "just to be sure that your lung does not collapse.....don't worry it only happens maybe 2 out of 10 times." I rested the two hours, got the x ray, and all was fine.
Test two was the next day, Tuesday. This was going to be the PET Scan. This was another IV but quite the special one. It was the glucose/sugar based dye that was highly radioactive. The technologist explained that it was five to ten times more radioactive that radiation treatments I would get to kill the cancer---but it only had an hour half life compared to months with th treatment version.
The medicine came out of quite the Sci Fi looking little container....cool. He gave me the medicine and told me I had to lay still and quiet for the next forty minutes. He gave me my panic button and left the cubicle as fast as possible.....Hmmmmmmm.
This was just a CT Scan like the others with some fine tuning on marking out the tumor location---over in about 15 minutes. That wasn't too bad.
Wednesday brought the the scope tests and the IV port insertion. Although no medical type had gone over the results of the previous two days, This Sherlock had it pretty well figured what the story was as there's not much sense in an implant for chemo IVs if it wasn't going to be necessary.
This time I went to the surgery unit to get prepped. The bronchoscopy was going to be a small incision just below my Adams Apple and they would put some kind of optic into bronchial areas of my lung to see if the tumor had gone there. The Mediastinoscopy was a scope to look at my airway/sternum area. The Hickman Power Port was going in just under th skin on my right side of my upper chest.
All of this was going to be under general anesthesia. Sleepy Bye Y'all----Happy Birthday to Me!!!
Prep for this was much like day one, except this time I was getting real drugs in my IV before I left my little glass fish bowl. I looked up at Kim when it was time to go to surgery and I told her I loved her and couldn't wait til we were on our way home after this 45 minute procedure. Off I went across the hall into an operating suite. I had a brief remembrance of seeing Dr. Landreneau and being told that I did not have to help them get me onto the table. Then nothingness.
I awoke from my little nap to find myself being wheeled into a hospital room. A nurse was explaining that everything went OK and I was just being admitted to watch for blood clots, something that could be an issue anytime you have a procedure in and around your lungs. I do remember that I was disappointed as I just wanted to go home.
To my great relief I noticed that Kim was out in the hall waiting for some of the people to clear out. She had brought me a milkshake from Mickey D's, and boy could I use it! As she came into the room she bumped the cup against the little wheeled bedside table and down it went spilling all over the floor. she grabbed a bunch of paper towels from the adjacent bathroom and got down on her hands and knees to wipe up the milkshake. She started to cry pretty badly. "Kimmy, what's the matter?" "All you wanted was something to drink after all this and I couldn't even do that for you..." she said through her muffled sobs.
I reached out to her and drew her to me for a big hug, reassuring her that it meant nothing that the milkshake spilled. Of course that was just the trigger that set off all of the frustration, fear, nerves, and anxiety she had so stoically faced for the last month or so. It was one of the most touching moments of my life with her. Sometimes the simplest things say the most and speak the loudest.
Discharged the next morning I went home, just slightly sore from an incision I had just below my Adam's apple and the one where I now had a slight bump that was my newly installed Power Port for my upcoming IVs.
Kim answered a call from Dr. Osborn, my soon to be Oncologist the next day. She had reviewed ll the tests and info along with Dr. Chen the radiologist and Dr. Landreneau, my surgeon. No surprise, I did have a malignant tumor. It was staged at 2/3rd stage. There was good news though. The Pet scan showed no spreading. The cells were the non small type which meant it was not as aggressive. The scopes showed no lymph node or esophogeal involvement. She was clearing me for chemo treatment starting the next week. I would be getting the 25 days of radiation starting then as well. The Chemo would be two 7 day courses separated by two weeks as to not overload my system. I did voice my concern over nausea and was told that I would receive anti nausea drugs. Dr. Osborn said I would probably lose my hair. Bummer. Overall the phone call was very upbeat and we were left with a positive outlook. Kim said, after hanging up, ""Now we have a direction."
So here comes Day One of chemo. Arriving about 8:30 in the morning I was led to a nurses' station. There I met Linda, the delightful nurse shown in the picture at the top of the Blog. She ushered me into a room with two recliners. In one chair was my "roomie" George. In his 60's, I would guess, he was received drugs for a blood disorder. His sister, Judy was there and welcomed Kim and I very pleasantly.
Nurse Linda explained what we would be doing today, and throughout the course of chemo. First I would be giving blood to check various levels. That would happen every week to follow the chemo, my white and red blood cells for anemia or infection and my general immunities. Then I would be prepped with some fluids and an anti nausea drug. I would then receive a small IV bag of one chemo drug. This would be the procedure each day. Today, and each Monday, I would also get a second larger IV bag with a harsher more "toxic" chemo drug. Toxic???? Hmmmmmmmmm.
I voiced my nausea concerns with Linda. I told her "April 14th, 1974, 8:05pm" She looked at me quizzically and I told her that it was the last time I had thrown up. She laughed a bit and then said that regrettably chemo does make people nauseous, but "Everybody's different". She reassured me that I was getting a very strong anti nausea drug in the IV before we would start, and I would get a prescription for 3 pills to take each morning at the start of each week.
Starting the IVs she used the new port in my upper right chest. She pressed a small red fitting onto the little bump and it just pinched for a second, less than a regular IV and the best thing is it could stay there throughout the week. Hmmmm, one pinch a week....maybe there is something good about this.
So, the IVs started. This would be about 3-4 hours worth of IVs on Monday, 2-3 hours without the bigger IV bag. Linda was very reassuring to me. After the drugs started flowing she left me with a very powerful thought. She said,"You know Mark, throughout all of what you are going to go through the biggest fear you have to face is that of the unknown. That's why we go to such lengths explaining each step. Since everyone is different, everyone will have different reactions, but we know what to look for and how to deal with most all things that would come up. The best thing to do on your part is just relax and ask us any questions you may have..."
Off and on over the next few hours we got to chat with Linda, as well as with George, who was very reassuring and supportive, and his delightful sister Judy ( a really great friendly distraction for Kim ). We also got to learn about Linda, her kids and husband, her work, just everything. As our time came to an end I was left feeling that she was more the sister I had never had. What an absolute delight!