Just maybe....

MD Anderson part 1 of 2 faithful readers. Don't get your hopes up though, chemotherapy is starting soon but the story of my trip to MDA is so long that I am sharing it in 2 parts. I call part 1: Just maybe...
 

My trip to MD Anderson in Houston was not easy from the start. Lot's of phone calls surrounded the referral alone and with my bestie, Laurie, coming along with me and my husband there were work schedules and personal commitments to consider but we figured it all out and got the appointment scheduled. The word "appointment" really kind of underdescribes it. "Commitment" is a better word. You end up having to agree that on your initial visit to MDA that you will commit 3-5 business days of your life. My first physician visit was scheduled on a Tuesday so you can do the math and recognize that we theoretically could have to spend the upcoming weekend and Monday there. We ended up fulfilling that theory.

Monday July 8th was deemed our travel day and we picked up my bestie at 6:15 in the morning. The mood was light and we considerd this second opinion as just that, a second opinion, being proactive, a great opportunity to hear what the experts thought, a trip to Houston. Fun, right? We laughed all the way down there, counting the signs for "gentleman's clubs" and Whataburgers. We even made an unplanned stop at the legendary "Buccee's", a most unusual rest stop. We even snapped a pics along the way. We rolled into Houston plenty early to get checked in to our hotel, explore the amazing hospital complex that exists there, and grab a nice meal. Things looked bright when we retired to our hotel room for the night and despite not having the Bravo TV station and having to flush the toilet 2 times each time you went regardless of whether it was "number 1" or "number 2" we were looking forward to meeting the oncologist assigned to my case. Fresh eyes and a new perspective on my case. This was going to be great. My appointment wasn't until 1:30 so we didn't even have to set an alarm to awaken us. We could sleep in...like a mini vacation.

Tuesday we were up with the chickens and, as would be his habit for the entire duration of our stay in Houston, my rock of a husband was up first, showered and went to fetch me and my bestie some breakfast. After he delivered breakfast he would retire to the hotel lobby to read the paper, drink his coffee and people watch. He allowed us private "girl time" for our showers and necessary primping. We left a little early because we weren't entirely sure where we going and how parking (which is a racket at the hotels and the hospital) would be. We navigated our way over to MDA pretty easily. Parking was a little tricky but we managed to get in to Garage 10 and parked. After that we followed the signs to the Gastrointestinal Center on 7 by elevator C. As I was waiting to check in at the desk I noticed the list of doctors on the wall and next to each of the doctors name, like next to a flight number on an airline terminal, was their status. It either read "On Time" or listed the duration of delay to see each doctor. My eye easily scanned down the list to find my doctors name, 30 min - 1 hour behind was next to her name. "Oh well," I said to my hubby and bestie, "she's either thorough, packed with patients like me that need to see her, or time management challenged." The second of those assumptions proved to be true. The people in the waiting room to see her looked so much sicker than me. Sallow skin, distended abdomens, and flat hollow stares from sunken eyes, that I recognize so well, filled that waiting room. I looked like an olympic athlete compared to these patients. Most seemed older than me and I thought "What am I doing here? I am not that sick, am I?" I kept that thought to myself and the time killing began. We did get called back for registration and consent signing. That took 15 minutes and we were sent back to our waiting area. And we waited, and waited, and waited. They changed my doctor's delay to 1 1/2 - 2 hours. We read our books and self entertained with Candy Crush and social media. Final I was called back for vital signs and I knew we were close. Finally, after 4 hours, it was our turn. I had a lab ordered and a CT scan that evening, but they assured me not to worry. Lab stayed open until 7 pm and my CT would be done no matter how late I was. MDA knew where I was at all times so I could relax about any other appointments I had. In solidarity my con padres were maintaining an NPO status with me. Needless to say we were all hungry, even me, if that speaks to situation we were in at all. Finally my name was called and we were led back to a room by the nurse who introduced herself as April. She actually spent a lot of time going over how things worked at the office. Of note, the doctor only sees patients on Tuesday's and Thursday's and it was essential for us to get hooked up to My MD Anderson.org ASAP because that was the best means of communication with the staff and the physicians. Interestingly, that proved to be true as I will tell of later. When she was done educating us we were left alone in the exam room.

A rap on the door a few minutes later revealed a small girl that introduced herself as the Physician Assistant, with her was a very large man in a lab coat that she indicated was a Russian exchange physician that wanted to observe my work up if it was okay with me. "The more the merrier" I shrugged. What followed was a thorough discussion of the timeline of events from my first symptoms to today. She wrote it all down and then we discussed all the side effects that I have experienced since then as well. She actually had some pretty good tips on helping my unpredictable ailing bowels. Then surprisingly she went into a lengthy explanation concerning a Phase 1 trial drug for anal cancer patients only. She said the doctor woud speak to me more about it but it might be a good opportunity for me. My bestie asked her several challenging questions about the study protocol which the PA could not answer because she said the study was so new that she hadn't had become familar with the details yet. She then had me hop on the exam table and listened to my lungs and felt for lymph nodes all over my body. When she finished she said all that was left to do was a digital exam...ummm, "What?" I asked. I mean this was hematology oncology. What did they want in there for? I rolled my eyes with dread at the thought of anyone coming near the tender exit of GI system, but I agree...I mean what else can I do? The Russian doctor who had been mute this whole time closed the little curtain that I had not even noticed and looked a little sorry for me as the PA put on a glove and started looking for some KY jelly in a hidden cupboard. This was a total "sneak attack". I had no choice. I stood up and dropped my pants to my knees and rolled on my side, eye to eye with my hubby. My bestie had stood up to offer her hand to squeeze. I have to give the PA this, she was very thorough in her exam of my nether area, commenting on the skin and spending as much time with her finger up my butt as my favorite radiation oncologist, Dr. "Cutie". She commented on the scar tissue, which I assured her hurt everytime she rubbed over it but otherwise was impressed with my healing and my lack of recurrance in the primary site. I squeezed my besties hand until it was over. After a quick clean up, the Russian opened the curtain and I was instructed to sit back in my chair and the doctor would be in shortly. Shortly? We waited a long time in that room, so long we thought the lights may go off in the hall. We discussed that I might be "fresh meat" for a study drug, I am in pretty good shape physically. My bestie had her doubts about a Phase 1 study we hadn't even tried anything else yet and what about the commute, that would be an issue and maybe even a deal breaker. We sat in there long enough to know that every scan was being looked at and my medical record was being thoroughly read and reread. When the doctor finally came we had had plenty of time to formulate several questions and wrote them down in my blue notebook, most of them surrounding that study.

The doctor had a very aire about her, she was pretty and looked very tired when she sat in the rolling desk chair. She sat back and crossed her legs and looked relaxed as she rested one elbow on the back of the chair on crossed her wrists casually. "She looks like a runner" I thought to myself. She got right down to business. She indicated that she had reviewed my whole case and had looked at my scans. She wasn't "impressed" by the uptake of that hot little hilar node. She didn't want another CT scan since I had just had one what she wanted was another PET scan on MDAs scanner. She never mentioned the drug study. She said "if" that node lit up on the PET than my next step would be another attempt at a biopsy. She really wanted a hunk of that tissue before she ordered any treatment, but she recommended conventional treatment that I could receive at home and just follow up in Houston. If that node remained unimpressive in uptake she would suggest we return in 8 weeks for rescan. "Any questions?" she asked. We were so stunned that there was no mention of the study that none of us could even think! I finally asked, "Have you ever seen this presentation before in a hilar node?" She answered without hesitation "All the time." Then she told us the CT was cancelled, go get my lab drawn and they would work on getting the PET ordered for Wednesday pending insurance approval and to stay NPO after midnight, just in case they could do it tomorrow. It was well after 5 when we got to the lab and they drew 6 viles of the "good stuff" from me and we left in search of dinner. Starved, talking out loud about what maneuvers we needed to make to push this through insurance ASAP.

All through dinner we speculated that perhaps the doctor thought this wasn't my cancer at all. That would explain why she never mentioned the study and suggested the more specific scan first. Just maybe...

Texas Jeff threw a punch at your cancer.
Jeanne sent you a prayer.
6 people sent you a hug.
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Waiting, waiting and more waiting--I'm sure that got very frustrating! Perhaps she didn't want to mention the clinical trial until she had more tests done. I will be looking for Part 2!
Betsy likes this comment
Chemo, again? What this time? ... But don't delay getting part 2 written just to answer.
Michele; Glad you finally got to Houston! I was waiting to hear about what happened. I can attest to the waiting and waiting! I have been doing it now for a year and it seems the more you try to maintain a schedule the slower things go! I also should have warned you how many truly sick people are there and it saddens me greatly to see the large number of young people. I am on my way home from having my treatment today but am l looking forward to part two. Always, Maya
That's what I've been praying for, Michele...that that is not cancer. I know how frustrating the waiting is, but hopefully you will be rewarded with good news at the end. Hugs, Mari
I will continue to pray for you. Maybe it's not cancer after all! That is my hope and prayer. I love the way you write and am eagerly awaiting Part Two! That's so awesome that you have your hub and your bestie with you. It sounds like the three of you can make even the most mundane of situations fun. Excellent! Danean
Having been there myself, and I am sure having seen the same doctor, I can relive the experience reading your post. I hope you managed to do something fun on the weekend to put all that out of your mind for a little while... And yes, now, waiting for Part 2! Hugs!
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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