Only for a Minute

I know you all have been anxiously waiting for "part 2" of my visit to MD Anderson. I will try to keep it a managable length for reading. Here goes...

Wednesday moring dawned and we set about our morning routine except I didn't have breakfast in anticipation of my PET scan. We decided we would wait until 10 before we started calling around to see what was going on as far as insurance approval and if we had been "squeezed in" on the schedule due to my out of town status. We didn't have to make one phone call because my cell rang just before 10. My scan had been approved and I was scheduled for 12:30. My bestie and I high fived as I listened to my telephone instructions. It wasn't long before my scan appeared on my MDA patient link. We got ready to head over to the hospital, speculating that we would be out of Houston on Friday at the latest. Having figured out the parking and our way around the massive complex we packed up the essentials for the waiting room and headed over. We parked in the garage and headed over to the ROC for my scan. The waiting room was packed. This was no surprise. I checked in and we settled in. They actually had a television in this waiting area. It was only the second one we had seen thus far within the walls of the institution. In short order, I was called back into the pre-prep area. They weighed me and took my vitals. A nurse named Brian came to get me from the vitals area. As we walked back to the scanning area he asked me several questions about what I had eaten since midnight. I answered him with "Nothing." He glanced at me sidways, "No mints or gum?" he asked. "No." I said. "Are you sure?" he asked. "Positive." I said. "NNot even a tiny mint?" he asked. I laughed and said "I solomnly swear that I have only brushed my teeth today. The prep said no mints or gum or food." He laughed and indicated to me that not everybody listened and it ws really important for this test. I assured him that this was not my first rodeo and that I was an "over achiever" patient as he guided me through the first of three triple lead lined doors. He sat me in a tiny room with a back lit picture of a tropical beach scene on the wall in a maroon, pleather, recliner then went to fetch me a warm blanket. The air was chilled, so I was happy to have the warmth of the blanket. He explained the prep to me as he assembled equipment to make the injection of radioactive sugar necessary for the scan. For those that don't know, cancer LOVES sugar so it will eat it up faster than other cells in the body and basically that's how it appears on the scan and is reported as "uptake". My last PET showed an uptake of 4 in the node in question. Anyway, he easily accessed my one and lonely vein with a teenie butterfly needle. He lightly secured it with paper tape and then went to get my dose of radiation. He brought it in contained in the standard lead covered syringe. Such a tiny dose of medicine but it needed to be housed to protect the enviroment and the individuals that handle it. This is what I was allowing to be injected into my body. It was necessary to get the answers I seek. It wasn't the first time, nor will it be the last for me. He quickly performed the work, clicked off that backlit beach scene and fully reclined my chair. He handed me the call light, instructed me to nap and relax for a while. He snapped off the light, gently closed the leaded door behind him and left me with my thoughts in a pitch black room. I think I napped because the hour passed quickly and he was back and sending me to the bathroom before my scan. I was handed off to young girl who lead me to the room that held the PET scanner. Twenty minutes later the scan was complete and they took me back through the lead lined doors to my waiting husband and bestie. Now the wait for results would begin...again.

I didn't hear anything Wednesday. By Thursday midmorning we were speculating that the results were normal, she was going to call me in for a quick appointment in the sfternoon and send us back to Wichita. By noon we were frustrated. I sent an e-mail to my "medical team" on My MDA site and we went to find a place for lunch and do some shopping for the know, M&Ms. It was on the way back from our outing that my phone rang with the local Houston area code on caller ID and I had my husband mute the radio. It was the PA. She cut to the chase immediately. The scan showed the spot, it was hungrier (uptake was 13 now), and most likely was my cancer. I gripped my bestie's hand as I listened to the plan. A pulmonologist had been consulted and they would call me with an appointment time as soon as they had insurance approval. The doctor really wanted a biopsy of the area and would recommend a treatment based on the results. I hung up feeling disappointed, but not surprised really. A short time later my phone rang and I had a pulmonology appointment in the morning at 9. I asked about perhaps having my biopsy then as well. They told me "no way" but in my mind I had decided that I would show up NPO and try to convince them to do it that day. We went back to the hotel room a bit shell shocked, weary of our visit to Houston and just plain sad. We made several calls to my sissy, friends and family. My bestie immediately got in touch with the pulmonologist that performed my first bronch and attempted biopsy. After a brief conversation she discovered he knew my new pulmonologist. They were friends. He planned on calling him to discuss my case immediately. We decided as a group that we needed a drink so we headed to Pappasita's to eat our feelings and drown our sorrows. Somehow I could not help but apologize. I was failing at remission, failing. My bestie just hugged me and assured me it was okay and I was not failing at anything. My rock of a husband slept with his arm draped over me that night. I had bad dreams and he held me tight when I would awaken shaking.

Friday morning we were up early. I didn't eat just in case they could work me in for the biopsy. I mean, we had heard from my Wichita pulmonologist the previous evening. He text my bestie after talking to his friend and assured us all I was in good hands.We parked like old pros and made our way to the cardiopulmonary department. The waiting room was packed. Oddly we didn't wait long and I was called back to an exam room. We saw the Pulmonology Fellow first. Turns out he was from Wichita and we immediately felt at ease and welcome. After a brief physical exam he let me down as easy as he could about not being able to work me in for biopsy that day. Ugh. We were going to have to spend the weekend. He was barely out of the room when the in strode Dr. J. He acknowledged my "VIP" status saying he had spoken to my doctor (his friend) the previous evening. He confirmed that my case was a tough one. He was very kind and full of information. He pulled up my scan for us to look at (a 5 year old could see that yellow hot spot in my lung - all our eyes were drawn to it) and he told us why the biopsy would be tough, but he thought he could do it if they generally anesthetized me to eliminate coughing. I made one last plea to have the procedure that day and he chuckled and said it was impossible because there were 12 on already and he had a full clinic, but they would try for first thing Monday. As a matter of fact, he pulled up the schedule and saw that i could be done early Monday morning. Reluctantly I agreed...we were in Houston for the weekend. He sent me over for anesthesia pre- certification. The nurse that did that was a riot. My Bestie and I loved her instantly and we had a good time doing my history and physical questions, even turning my EKG into a "timed event" (which we "smoked", by the way, in under 5 minutes). We stopped in the business office to check on the nightmare that is insurance and I am not going to waste your time with that horrific drama. Just suffice to say we got it all worked out. We were then released into a great abyss of "time to kill" until check in at 6:00 am Monday morning. On the walk to the parking garage my husband looked at me and my bestie and said "From this minute on we are on vacation in Houston. What would you girls like to do?"

We decided to spend Saturday in Galvaston so we got up early, checked out of the hotel because we had to change hotels due to our unanticipated stay and headed for the gulf. There is something very healing about seeing a great expance of water and the sand that it washes up on. We souveniered shopped and drove the coast looking at the homes that the rich people live in for the summer. We then headed to the Tanger Outlet Mall for a little retail therapy. By the time we returned to Houston to check in to our hotel we all felt a little better. We checked in to a hotel that was a third the price of our other and was bigger and nicer and you only had to flush the toilet once to get it to work. Sunday was a little rainy and we went to movie. We saw The Lone Ranger and it was funny and strange and killed time as well. We drove by the Aqaurium and then had a good dinner. It was a loooong weekend, but we made the best of it and I could not have been in better hands. We packed our suitcases up and did all we could to get prepared to go home because unless I had a complication, after my bronch/biopsy I was going home.

Hang in there readers, you're almost there :)

We were all up early on Monday and headed over to check in for my procedure. We were the second family in the waiting area. We had to wait a long time. So long, that the receptionist noticed...that's long. Apparently the first procedure was rather challenging but my turn finally came so I kissed my hubby and they led me and my bestie back to the prep area so she could take my things back to the waiting area. They took both my vitals and my clothes. I volunteered to give up my pants because the last one of these I had I peed them if you recall. We didn't wait long when anesthesia came for me and after explaining things they dismissed Laurie and led me to the procedure room. I really felt like a VIP because there were 6 people in that room, two anesthesia personnel, someone running the EBUS machine, someone from pathology to look at any biopsies he took, the Fellow and the Pulmonologist. I felt more nervous about the IV than anything else as the strapped me to the table and placed an oxygen mask on me. Anesthesia quickly had a vein in my hand isolated and a tiny IV started. I heard them order some phentanyl and the room went dark.

When next my eyes opened I was in recovery with my husband kissing my forehead telling me that they said things went really well and he was able to get a good sample. Shortly after that Dr. J walked up to my gurney holding a paper with pictures from my procedure. He showed us the lymphnode and then said, it was malignant. He took hold of my hand and said "I am so sorry." Tears filled my eyes as I nodded and said "It's okay, we kind of expected it." One tear dropped from my eye and then I was over it...I cried only for a minute.

4 people threw a punch at your cancer.
5 people sent you a prayer.
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I so hoped you wouldn't have to hear those words again, Michele. Sending you a big hug and lots of prayers. Mari
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As I said on FB, thank you. You are blazing a trail that some of us will follow more easily because of your candor and insight.
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I am in awe of your strength and courage. Sending prayers.
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Throwing a punch at that hot spot. Take care of yourself.
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I know you are still in this fight and this little setback is not going to stop you from going after this swinging, Michele. As a good friend of mine always says "A setback is just a set-up for a comeback!" Know that you will always be in my prayers. Stay strong, you can do this! Hugs-- Martha
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Oh Michel I am sorry for your news But the fight is not over! I am praying for you and giving your name to a quite extensive apparently group of people who have been praying for me. I have been in your shoes. I remember telling my husband these are the cards that were dealt to Mr. I have to play them out. You do too. Just keep doing what you have been. Find the right docs and plan and fight with gusto!
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My heart and prayers are with you. So Sorry you have to hear those words. Thank you for sharing your story, it has truely helped me with my cancer battle. Thank you Michele you are my inspiration.
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Michele I waited to read this because I did not want to see those words. And I'm just sad because I feel that you are a friend..because you have had such a huge impact on so many people. But I'm not going through what you are enduring. I can only imagine your inner most feelings. You are an inspiration to so many people..we're going to keep you! XOXO
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Michele- Thank you for sharing your story. This isn't over yet! You fight and you fight hard. This might sound crass (is that a word) but I remember saying these words out loud and I felt like Wonder Woman... "Cancer picked the wrong bitch!" It somehow gave me what I thought was superhuman powers. Bitch is not a word I use often but saying this made me feel stronger than I thought I would ever have to be. Huge hugs, Linda
Michele, Whyanyone like this comment
"I took down the beast once before…no gloves on. I will do it again!" LOVE IT!
I am so glad that you have that attitude that you took it down and will again. Your a survivor Michele. Thanks for sharing this with us. Bless you. xx.....
My daughter always refers to me as one badass bitch all the time...she means it as a compliment to my toughness. Fighting cancer is a street fight and I feel empowered by the fact that I took down the beast once gloves on. I will do it again!
Michele, Sorry to hear that things did not go more positively for you in Houston. I was hoping, I'm sure like everyone else was, that the outcome would have been better. But at least you were at the top caner center in America and now know what exactly your dealing with...Did they give you any idea of what the next step is? Can they surgically remove the node? Radiate it? or did they offer you any kind of trial? Are you scheduled to go back to Houston for a follow-up visit? If you are going back I can make a few suggestions to you (as you know I have been going there at least once a month and now twice a month) as I have learned the town, hotel, restaurants and my way around MDA pretty well. I will look forward to hearing back from you. Always, Maya
I start chemo tomorrow. 4 cycles over 2 months. The node is pretty much in a bad place to try to remove. If it responds well to the chemo I will have a course of radiation. I will back in Houston in mid Septemebr to evaluate how well the chemo is working. Thanks for the concern, Michele
No Problem! Let me know if you would like any help or suggestions. I just had another treatment on Friday and will have my scans done on August 1st to see if this trial is working at all. Then I will have a big decision to make as to whether I continue treatment through trials (if they have anything to offer?) or just to stop altogether. I'm not giving up but not sure how I will attack this thing differently. Always, Maya
Sorry, what time of chemo? Maya
Cisplatin and my old friend 5FU
How are they administring it? over what period of time? can you take the zeloda (oral 5FU)over a period of time? Maya
I will receive the cisplatin over several hours then they hook up a pump with the 5FU to run at home over 46 hours. Cycle every other week depending on labs. 4 cycles.
I've done the cisplatin, had some hair thinning but did not lose it all. I stayed in the hospital for 5 days getting the cis and 5FU. Not bad nausa, no vomiting. I'll be thinking of you and will hope for the best that you will have minimal side effects and will breeze through this! Always, maya
You've beat the battle before, and another one is ahead of you, and this you will likely beat as well, as you clearly know how to stay in charge. You are set to win this war. Few wars are one with one battle. You have my heart and my admiration. It sucks, but you will be past this and win...I can feel it.
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Dear Michele, Boy that news is disappointing no matter if you expected it or not .. I enjoy reading your posts Michele as they take us through each step and they are informative and poignant. First of all I am so impressed at how you juggle all this.. The scheduling, instructions .. Everything.. It's like planning the invasion of Normandy isn't it? If you can do this you can do anything including the treatment.. It breaks my heart you have to do this again Michele! I wish we could all rotate in for those of you who have had to do this again and again.. I swear I would do a round for each of you! Really I would.. I just feel so terrible.. It's not fair .. It's random and I hate it.. It makes me want to give up and it's not even me.. I would have bawled my eyes out just because of the effort it take to prepare for this stupid treatment emotionally .. Put me in charge of being pissed off! Did your kids ever read the book The Giver? Where one person is in charge of feeling the emotions for the entire village? Know we are all gathering around you and are lifting you up to get through this .. My love to you and your family:) Lori
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Michele, I am so sorry to hear this...I did read last night was too upset for you to even reply...I'm so glad to hear it sounds like you are already putting up your dukes and ready to kick some ass...thoughts & prayers are with you...Jeanne
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What to say? Well written? Yes. It is. One thing bugs me though. It seems they at MDA are not concerned at all about making a patient wait indefinitely. That is not right. I understand up to one hour, but that is IT. So, is there a game plan? Have you thought about it? BIG HUG.
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January 31, 1963 - June 10, 2020

Vital Info


October 3, 2011

Click Here

January 31, 1963

June 10

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3


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.


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