You're Never Going to Believe This!

I have said in the past that cancer is like a rollercoaster ride in the dark. My most recent visit to MD Anderson cannot be described as anything but that. After having endured 2 months of a gawd awful concoction of Cisplatin and 5FU, tension was running high as my PET scan and follow-up for "restaging" approached. Just a word about "restaging"...it is a strange use of the word for me. I am a stage 4 anal cancer survivor. One never moves to a lesser stage. You can only go up. Like a stage 2 can re-present as a stage 3B, but a 2B can never be "restaged" as a 1 and once you hit 4 there is no where to go. Like Cathy said on the Big C series "There is no stage 5, right?"  All this is just semantics, but I wanted to mention it because it appears on my consultation letters as such. Back to my story. My husband and I went alone to Houston this time. It was going to be a quick visit and a long drive. My sister's time with me was coming to close so she stayed behind with my daughter to stock my freezer with meals and do every ounce of wash in the house. We really felt we didn't need any extra ears or support as we figured this was just going to be a validation of the plan we had already made with my doctor two months before. Either the chemo worked and we were moving on to the radiation phase, Plan A, or it didn't and Plan B chemo would be in order. My PET scan was Wednesday morning and I had two doctors appointments scheduled Thursday afternoon, a radiation oncology consultation and a GI Oncology appointment for the "restaging". We packed to stay through to Friday knowing how they do things at MDA in case there was additional testing needed. We did not anticipate any though. We were hoping chemo worked and my radiation would ensue upon my return to Wichita just as we were told on my previous visit there. So we loaded the truck in the early afternoon on Tuesday and headed south.

My PET SCan was done on Wednesday and by the time we were done with my labwork I felt I might faint from hunger. We headed over to Olive Garden to "eat our feelings". After three breadsticks I was quite certain I would survive and our mood lifted slightly despite the angst associated with hearing the news of the PET results the next day. My husband took me back to the hotel for a nap and we even did a little shopping later that evening before turning in early. Our plan was to leave after my appoinments and drive all night if we had to to get home. We slept in a bit and then enjoyed a late breakfast at the hotel. Around lunch time we checked out and headed over to MDA planning on having lunch there and people watching before my 1:30 Rad Onc appointment. I was feeling a bit nervous as I ate my sandwich sitting in the Aquarium Lobby so we could people watch for a bit. About 1:00 we headed over to elevator G on the 1st floor and I checked in. The waiting area was half full and they told me I would be seeing Dr. Das and he was running on time. They gave me some paperwork to fill out and we took a seat by the windows. It wasn't long until nurses started appearing through the clinic doors and calling patients names emptying the waiting room. I was the 4th one called and we followed a very pleasant nurse back where I was weighed and my vitals were taken. She asked lots of questions and completed my history on the computer in the room. She told me that a resident would come see me first and then Dr. Das would be in and she left us to wait. I held Jerry's hand and quietly told him my gut was aching. He said that his was too and then a rap came on the door. "Come in." I said. Just as the nurse had told me, it was a resident. He introduced himself and a student that he had in tow. He didn't mince words and asked me if I knew my PET results. I said "No sir, but I'd sure like it if you told me." He chuckled and then revealed that my scan showed no evidence of cancer anywhere. My husband and I shared a collective sigh. I wanted to cheer but this was not the time for that so I just smiled broadly. I needed to share my whole history of treatment and listen closely to know what we would be doing next even if it was with a big goofy grin on my face. The resident listened intently and took notes on my history from 2010 until today. He informed us that Dr. Das would be in shortly with his recommendations for radiation. About ten minutes after the resident exited he returned with Dr. Das this time and the student. Immediately I notice that Dr. Das has a quiet personality and a gentle manner about him. He spoke gently as he told me scan results were the best possible and then said he was going to recommend 3 weeks of radiation. After a few minutes of conversation and some questions my husband and I begin to realize that my the treatment he is prescribing cannot be delivered in Wichita. I start feel a bit of "financial panic" rising within me. My husband takes control of the appointment, assures Dr. Das that we can make it work and agrees that my Simulation CT can take place on Friday. After looking at a calendar and discussing our options my radiation is scheduled to start as late as they will allow me to wait in order for us to get a plan together for me to be in Houston for three weeks. It is slated to begin on September 30th and run for the predicted three week course. He examined me carefully, feeling for lymph nodes everywhere and listening to my lungs. He wasn't sure what Dr. Eng would say as far as chemo was concerned. I told him I had finished the course and was seeing her right after him. My Sim was scheduled for 3:00 PM for Friday. We were spending another night in Houston and my husband would be pulling his "all nighter" a day later.

We left the Radiation Center after the nurse educated me on how my treatments would work and headed over to the GI Oncology center on 7. I was feeling a bit overwhelmed as Jerry and I tried to work a plan. We knew of someone in town...a distant relation to Jerry's mother's youngest sister's husband's sister...I'll just let you think on that for a while. We would work on Angel Flights and fly me back for the weekends. It was all going to be okay. I called back the hotel and we were able to check back in (thank goodness!). We hadn't waited long when my name was called. My vitals were taken again and I was reweighed. No change in either. We continued to try to make a plan while we waited for the doctor. It wasn't long before the nurse practitioner arrived and started reviewing how my chemo treatments had been and then Dr. Eng came in. She leaned against the exam table and faced us. She was very pleased with my response and had talked with Dr. Das. She then told us her plan. She would be running the same chemo on me for all three weeks of my radiation. What? More of that awful chemo? Who was going to take care of me? How was going to handle this? I was not going to handle flying and the chemo too! She clearly saw me deflate and asked what was wrong. Again my husband stepped in and said we would work things out. "Flu shot." was all I heard before she closed the door behind her. I found myself signing a consent for chemo and receiving my flu shot feeling shell shocked. We walked out of the clinic into an empty hallway. They were closing for the day. All the lights were out and the waiting room was empty. There was nothing to do but leave and we started through the maze of MD Anderson toward the parking garage. I said nothing as Jerry talked through possible plans and ideas for caring for me for the three weeks of radiation. We paused just before the bridge to the parking garage for my husband to use the rest room. He left me in the hall of windows. I turned toward them before the first tear fell. I leaned into the railing and started to sob. My husband returned shortly and folded me into his arms and let me cry it out then gently guided me to the elevators. "I shouldn't be crying!" I sobbed "There are so many people that did not get good news today within these walls. I am just so overwhelmed!" I cried all the way to the truck and we sat for a bit...me wallowing for just a few minutes longer before it was time to put on my big girl panties and be strong...be a fighter. I called my sister, my children and my mother. Jerry called his parents.

After return to our hotel and re-checking in we regrouped and decided that Jerry would come week one of my treatments and we would see if my mother could come for the last two weeks. We would check if our Houston connection could help us out and we would work it through. We went to bed early and I laid awake for quite a while praying. Praying for forgiveness for my lack of immediate gratitude for the healing that God had provided me and asking Him to help me to trust in Him more fully to care for me. I did not have to fix this. I left God in charge of the details as I drifted off to sleep.

The next morning we contacted Jerry's "Aunt" Rita as I like to call her. She was very nice and immediately invited us out to meet her at her office so we checked out of the hotel after breakfast and drove to her place of business. She was so very kind and nice and friendly and just what I needed. She handed me kleenex as we shared our need for a place to stay and we told her about my treatments. She had a spare bedroom and bathroom, she was thrilled to be able to help and so it was settled that we would be staying with her throughout my therapy. I felt better when we left to head back to the hospital for my CT. I thanked God for her and although I was concerned about how we could possibly handle the side effects of chemo, radiation and Houston traffic I called my mom. She was willing to come for 2 of the weeks to help us out. As we pulled into the FREE valet parking for radiation therapy I was feeling like at least we had a plan.

We were early for the CT. Really early. Over an hour early. I waved my husband towards the empty waiting area seats. It was desolate in there on a Friday afternoon. When I checked in, I informed them that we were quite aware we were early and we were perpared to wait. We had so much to talk about and plan anyway. To say I was overwhelmed...well frankly, that is just an understatement. In a few weeks I was going to have to be 600 miles away from home, staying with someone that barely knew me, having chemo which made me feel like hell with radiation. It was all just too much, too soon. I barely felt recovered from my last round of chemo. I felt defeated. The receptioist was quite perceptive. She picked up the phone and I heard her informing somebody that I was early and then ask if could I be worked in now. She hung up and told me to head on down to the basement to waiting room G and that they were going to call the doctor and see if he could come early. I gave her a smile of relief. Finally I felt a glimmer of promise. Perhaps we wouldn't have to drive until the wee hours of the morning to get home. That would be nice. I signaled to Jerry that we needed to get on the elevator and he met me in front of them. He too was glad they were going to try to work me in early. We rode the elevator to the basement. We exited into a very wide hallway. We felt encased as we followed the signs to the waiting room. We laughed at the irony of feeling like we were in the "bowels" of the hospital. The walls were thick, fortified, to protect the world from the radiation that was delivered to people like me. It's interesting that what is considered life-saving for one is life-threatening to so many others.

Waiting room G had four other patients waiting, a few of them looked rough. I imagine I looked rough too. There was a TV monitor on one end that displayed information and looked similar to a "Stand-by/First Class Upgrade Status" screen you would find at a gate in an airline terminal. My name was alone under the word Simulations with the time of my check in noted as 1:47 PM and there were four names listed under the title Therapy with there times listed as well. My husband observed that I was next. I laughed and said I was only. We started settling in for a long wait. Just then a wide heavy door swung open across the hall and we were stunned to hear my name called. I kissed my Rock and said "Yay!" right out loud as I was warmly greeted by a radiation technologist. She informed me that Dr. Das was able to come early and she wanted to get me set up as quickly as possible. She guided me into a room with a CT scanner in it. I was introduced to the physicist in the control room on the way in. She gave me friendly smile and a nod. I was asked to disrobe from the waste up. I was given an emesis basin to hold my jewlery and a towel to maintain my dignity. The tech closed the blinds to the control room and then stepped out. I stripped quickly and then satin the chair with my towel wrapped around me. Within a minute she was back with another tech in tow and they directed me to get on the table so they could start working my mold. I layed against the unformed, bean bag feeling, blue mold raising my arms above my head gripping the handle bars provided. The girls started in forming that mold to my body using a vacuum to remove air forcing it to cradle my head, shoulders, and torso. It is actually a very secure feeling much like being swaddled. Soon I was told to relax my arms and the mold just held me in place requiring no effort on my part at all. Then in walked my doctor, the resident, the student and the physicist. He asked me how I was doing. I told him I was alright, but I was a little sad about having to have chemotherapy again with my radiation. His face lit up instantly. He smiled at me and said "No you don't." I thought I was hearing him wrong so I answered "I beg your pardon?" He then went on to tell me that after going over my scans again that I was a candidate for High Intesity Beam Radiation with respiratory gauging and it was possible to complete my therapy in two weeks, not three. He would call Dr. Eng and tell her I wouldn't need the chemo after all. I felt relief wash over me. This is the rollercoaster that is cancer, right? "Oh thank you!" was all I could manage. I could not wait to tell my husband but that would have to wait until after the calculations were collected in my simulation. I layed still, holding my breath and breathing "normally" (whatever that is) when instructed. The techs came and marked me in purple sharpy and then gave me a pin point tattoo on my chest over where the offensive node lies. I didn't mind it one bit. They equiped me with waterproof film to place over my markings and told me to use a Sharpie for the next few weeks to keep the markings clear. I was left to redress myself. On the way back to the waiting area I was reminded to check my MDA website for my radiation schedule. My husband immediately registered the joy on my face when I came out the treatment area door. I literaally ran to him and threw my arms around his neck and gushed "You're never going to believe this!"

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Outstanding! I'm so happy that things are working out so wonderfully. Congratulations, Michele.
Michele likes this comment
All I can say right now is, "yea!!!!!" I am so happy for you! :)
Michele likes this comment
OH - hugs! Imagine being happy about two weeks of radiation! What a story. Michele, we'll be with you every minute of the way...
Janet, Michele like this comment
That's one bumpy ride you are on Michelle. Congratulations on both parts of your good news. Hope that the radiotherapy goes well for you and they make a smooth and uneventful full recovery.
Michele likes this comment
it does sound as if you were on quite the roller coaster ride, but came through nicely. if you are feeling up to dinner out with a fellow bfacer/ac person when you are back in houston for treatment, or if i can do anything to help you out, i'm here.still unable to work, but i have wheels and know houston quite well. OD@aT tj
3 people like this comment
Oh wow! A long journey to a happy ending. I am so happy for you.
Michele likes this comment
Good luck through Radiation.. what a story, it was a rollercoaster ride just reading it. God Bless you Michele
Michele likes this comment
Pawsome news all 'round! *high paws*
Michele, Carol like this comment
Omigosh, Michele, first I'm teary eyed because of your good news but then also because of so much thrown at you at once. But this had a wonderful ending and I am so happy for you. Hang in there...you are a constant in my prayers. Hugs, Mari
Michele likes this comment
God Bless you Michele... wow.. God is good and will get you through this.. I am praying for you.. hugs and love Sabina
Michele likes this comment
Michelle, I am so happy to hear your news!
Michele likes this comment
Such awesome news, Michele!! I am SO, SO happy for your clear scan results, that you do not have to do chemo again, that your radiation will only take 2 weeks instead of 3, and that your angel, Aunt Rita, has a place for you to stay. As always, you are in my thoughts and prayers. May this be the magic bullet that takes out your cancer for good!
Michele, June like this comment
I love the way you write. I'm so happy for you! I hope your two weeks fly by. Sending prayers.
Michele likes this comment
I couldn't be happier for you! But what a roller coaster ride. God works miracles!
Michele likes this comment
I am so very happy for you. Cancer is like a roller-coaster ride and we are always hanging on for any good news or any hope, sometimes just needing one thing to go our way. My prayers and thoughts are with you. You got this.....
Michele likes this comment
Clear scan! Y-Y (The Y-Y is my attempt at a text icon depicting you and your Rock riding a rollercoaster with both arms up in the air.)
Michele likes this comment
What a bumpy ride - a pretty good end to it. Will be thinking of you all the way through your next bout of treatment.Annabelle
Michele likes this comment
Michele, I COMPLETELY understand the "financial panic" mode . . . HAPPY NEWS!!! But, I do not understand why you have to have radiation if there is no evidence of cancer?? Can you explain??
To "sterilize" the area from any remaining microscopic cells. The cancer cells may just be stunned not eradicated completely. My doc has vast experience with anal cancer and it's behavior. She thinks this is my best chance for staying NED for a while. Thanks for the thoughts, support and prayers, Michele
You're a fighter and it's working! Happy for you.
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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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