Drink It All Up!

I have to say that this most recent trip to Houston was fast and furious! What with leaving mid-afternoon and rolling into Houston after midnight and then up and out the door the next morning for my testing at MD Anderson we barely had time to think about the gravity of this visit. Let's face it, I have stage 4 anal cancer and my treatment is strictly a guessing game. Of course we see it as an advantage that my doctor at MDA sees many patients that are stage 4 and has a pretty good idea of how to thwart it and at least keep it's inevitable spread stymied for as long as possible. "The key to long term survival is close survelliance." is what ol' brown shoes told me almost four years ago now. So here we are knee deep in the battle and monitoring me with an eagle eye. I have to admit that my scanxiety has been at an all time low since all this cancer business started. I figure it's because I used to be so concerned about a recurrence and now that it has happened I suppose my psyche perhaps feels it can "stand down". I mean once somebody tells you that you are going to be dead and three years and surpass that time limit it all just feels like gravy to me. So with that attitude I strolled into MDA for my labs and my PET scan.

We made our way up to the lab, riding the escalator for fun. As usual the whole place was packed but over the din of patient and family chatter you could hear a live group of carrollers singing. As we drew closer to the group I could see they were dressed in 1700s costumes. It put a smile on my face to see them and you could see the comfort that they were bringing just by being there. Anyway, we entered the lab and I filled out my obligitory slip of paper and requested a new arm band (Hey, it's the holidays, right?) We waited patiently. My husband hadn't eaten yet and was not even going to partake in coffee until I was getting my PET so as not to rude. (Very sweet, right?) We were out of there in 30 minutes and she only had to dig a little to get the blood she needed for her many testubes that bore my name and medical record number. From there we headed up to the 6th floor to the PET scan area. Jerry went to grab us a couple of seats and I got in line to check in. Apparently one of their scanners went down and it was pure bedlam. I don't know how much you know about PET imaging, but being loaded in the computer that runs it is a vital part and they preload the patients for the day and do them in that order so just moving someone to a different time let alone another scanner is not that simple, but I got checked in and took a seat. I was actually nearing the end of a novel that I have been reading and I was dying (no pun intended) to know if the herione was going to escape so I was happy to have to wait while they sorted out the schedule. I had barely settled into a rhythm and they called my name. Dammit. I shut my book and hand it to my husband to put in my backpack. There is no reading during the hour before the exam. As a matter of fact there is no talking, no iPhone using, no texting, no music, no light...need I say more? Any stimulus is off limits. I was going to have to wait to know what happened to Eve Duncan (that's the main character). I followed the nuclear tech back to the prep area and he put me in cubicle 11. I did not know this particular tech but they are all good at MDA. I was comforted to hear the booming voice of the tech I knew, I call him "Sarge", coming from the cubicle next to mine. I knew it was him (Sarge) because his speech about how even "one single solitary calorie" consumed within 6 hours of your PET scan can ruin the test results sounded like it was coming from a drill sargeant. It's hilarious to hear him give it over and over to anyone he preps while you are resting in your cubicle for an hour. My tech got my IV started in a tiny vein in my left wrist and went to get my dose of radioactive sugar in a syringe encased in a little lead cylinder. It's really for his protection, not mine, as I am having this injected into me and it is simply shielding him as the handler. This used to concern me but I have stage 4 cancer for pity sake so why worry about a little radioactivity. The medicine is injected post haste and my IV is removed. He instructs me to rest, turns out my light, pulls the cutain and leaves me to it. I don't feel tired but I actually doze and have one of those little twilight dreams that one can have during a nap. I actually feel pretty good when the transporter comes to take me to empty my bladder behind a lead lined bathroom door before I am taken to the scanner room. There are many rooms back in there and I wonder absently if they ever put the wrong person on the wrong scanner. Theoretically, I suppose, it could happen. Realistically, I know, it does happen but I think rarely because I am always asked to state my medical record number and my birth date as well as my complete name. They ask me for the information, I spit it out and they lay me on the table. I hold still as they scanner collects it's data from my knees to my chin. It takes about 25 minutes. When it is over, they hand my glasses and my sweater and point me toward the exit. I say thank you but don't even bother to try to read their expressions or the look in their eyes as they wish me Merry Christmas because they are professionals and good ones too. I am sure they see both extremes and don't have any part in sharing news, bad or good. That is the physician's job and they leave them to it. I head to the waiting area and find my husband deep in conversation with a throat cancer warrior from Canada that was awaiting his name to be called. That's my husband's way and I sat down and I joined the little party with the fish in the tank witnessing our words exchanged about the Calgary Stampede, of all things. We left and headed to lunch (or is it supper when your first meal of the day is at 4:00 pm?) and my husband chatted through the meal about a couple of other folks he met while I was being radioactivated, one a teacher and the other owned a junk yard. I enjoyed hearing about their lives and what led them to MDA. He took me shopping and bought me new boots for Christmas which I adore! We returned to Rita's just in time for her Bible study group in which we both happily participated. It gives us peace. There are several small children that come with their parents and as I have seen so many times before they love my husband and end up playing at his feet and crawling into his lap with a book. I tease him and say it's the beard (they think he's Santa) but I know that the truth is that he is an educator and he loves children and they know it like a sixth sense. The day is over before I have even a chance to worry, we hug Rita goodbye knowing that we won't see her in the morning and I sleep soundly.

I awake in the morning feeling good. I sip coffee after my shower as I apply make-up, dress and pack to go home as we are returning to Wichita directly after my appointments. It's not until we pull into parking garage 10 that I feel that familar pit in my stomach that comes with getting test results. It's barely noticable. Like I said before my scanxiety is truly at an all time low. We park on level 8, take the elevators to level 3 and hold hands as we stroll across the bridge taking in all that is decorated for Christmas. A hand bell choir is playing in the Aquarium Lobby and we stop to enjoy it for a minute. We are an hour and a half early so we even shop at the little sale they are having of items decorated with butterflys drawn by children that are battling cancer. The procedes go to children's cancer research so we purchase happily. We finally make our way to the 7th floor by via elevator A - the GI Cancer Center. I feel like a misfit here, not because the anus (awkward) is not part of the GI tract, it is the end of it much like the mouth is the beginning. It is because anal cancer is squamous cell cancer and that makes it very different from rectal, colon, intestinal and stomach cancers. It lands in the GI system based on it's physical location not it's properties and I feel like my cancer doesn't belong here. I feel like it doesn't belong anywhere, especially in my body.

We check the board and see that Dr. Eng is running on time. We exchange a look of surprise as my husband goes to find us a seat in the packed waiting room and I get in the long line to check in and pay my $40 cover charge. I strike up a coversation with the young woman behind and we share how much we both love Dr. Eng and how she just has a direct calmness about her. We giggle as I am so distracted by a long gray hair on the back of the black coat of the woman in line in front of me that I keep staring at it. "Do it!" my line buddy says. "She would want you to. I want you to!" As stealthily as possible I pluck it from her coat and she is none the wiser. We dissolve into muffled laughter after the deed is done and just for a moment I am a girl with not a care in the world and it feels good. When it is finally my turn to check in the receptionist and I exchange pleasantries. She tells me the doctor is on time as we wait for my medical credit card's approval. We wish each other a Merry Christmas and I go to sit with my husband. He witnessed my tom-foolery in line but doesn't scold me for it. He is anxious and I sense his tension building. He so badly wants me to be okay and knows he is powerless to fix this for me. He doesn't want me to suffer. I get that and my frustration lies with the fact that I am putting him through this whole mess and there is nothing I can do to stop it so put my hand over his when I first sit down and give it a reassuring squeeze.

My name is called by the vital signs collector. I follow her to a little cubicle where I am weighed and my blood pressure, pulse and temperature are taken and recorded. I am proud of my 4 pound weight gain from my last visit and so is she. I am feeling good and it shows. I return to my husband and he pulls out my blue note book and writes the information down. We then settle in to wait and I grab my novel which I am determined to finish! The little niggle in the pit of my stomach is getting a bit bigger as time ticks by ever so slowly as my appointment time edges closer. My name is called 5 minutes early and my husband and I exchange another surprised look. We pack up and I throw my unfinished novel in my backpack and we follow Dr. Eng's nurse back to the room. She asks a few questions making sure my med list is in order and then leaves us to wait for the physician assistant. I snatch my book from my bag and start to read. My husband comments that we have waited a long time once we've been roomed before I answer him by commenting that I might get my story finished. I only get 10 minutes of reading in when there is a tap at the door. I say "Come in!" like it's my house. The PA is not the one we had met before and I wonder if the other is on vacation. Heck, it is December 12th after all. Maybe a late Thanksiving or early Christmas trip. Anyway, the new girl is nice. She asks me several questions about about my health, any shortness of breath, cough, or fever. I tell her about one fever I had developed in October and about the intermittent chest heaviness that started a few weeks back. I also inform her that I have kept my Radiation Oncologist up to speed on everything. "Good!" she smiles and then tells me that my scan shows no evidence of disease (NED) at this time. My husband and I just smile, I clap my hands together and said "Yay me!". She agrees and then goes on to tell me that I have developed a pneumonitis in my right lung, but it is not uncommon and as long as I am symptom free they plan on just watching it. There is another tap at the door and Dr. Eng peeks in. I beckon her on in to join the party. She is ginning and laughing and hugs both my husband and I saying this is the best Christmas gift ever. We are all sober as she acknowledges the graveness of my anal cancer in advanced stages. We discuss the grim statistics openly. (Why brush the truth under the rug? It doesn't change it for a second) We all agree I have no business being alive but for some reason I remain on planet earth not only alive but kickin' as well. She can hardly believe I am able to work and tolerate my normal activities of daily living. She grabs my hand and looks at her PA. "She's perfect for my research study!" "What study?" I ask, "There are no new studies are there?" Dr. Eng went on to explain that this research is privately funded by a patient that she had treated for anal cancer. "How generous!" I think. She was enrolling patients and studying their tumors and their blood DNA searching for any commonality amongst non-responders and unique responders (like me). The objective is to work towards developing a test that can be done on patients to determine which kind of patient they are so as to treat them properly from the start. I am excited and she says she will send in her research assistant to consent me. She plans to rescan me in 90 days. "That's March." my husband says. We then get into a conversation about how far we live and could we possibly do this over spring break. Dr. Eng's eyes ;ight up and she says "Sure! You need to stay the weekend after and participate in our colorectal walk/run!" She tells us she is the co-chair this year. I whip out one of my blog/book bookmarks and ask her to write the site for registration down for us. She happily jots it down then glances at the mark. "Can I have one of these?" she asks. "Absolutely!" I say. I hand her a few and she leaves, her PA trailing her. "See you in March!" she calls over her shoulder. We wait just a minute and her research assistant comes an consents me. We leave and head to the cafeteria with about an hour for lunch before we meet with Dr. Das. The little stomach ache is gone and I feel the relief of the reprieve I have been granted. Only good news today! We eat all the while texting family and friends the news.

My appointment with Dr. Das is about the same as the one with Dr. Eng. He is laughing and smiling and hugs us both. After some instructions on what symptoms to watch for and when to call him he dismissed me saying that he plans to see me once more due to the pneumonitis and my remarkable response to the therapy. Just a little "insurance" he called it. We agree that it is wise and leave the office feeling light and free. We make our way to the parking garage level 8 and prepare for the long ride home. I call my sister and my mother. Everyone is excited! It isn't until we are outside the nerve racking Houston highway system that I have time to think. I look out the window and few tears build and then fall. My husband asks me if I am okay. I tell him that I am but wonder how many people did not get the good news we did that day inside the walls of MDA. "Survivors guilt" hits me like the ton of bricks that it is and I am immediately overwhelmed by the enormity of the gift that I have just been given. I am hesitant to say I am blessed, because what if my cancer returns, does that then mean I am cursed? Does it imply that everybody else that got some bad news today is cursed? I say no! I'd rather just give God the glory for my healing because he is responsible for every good and perfect gift. He has blessed me with the gift of life no matter how long (or short) it may be. It's strange to feel so torn. I am so happy to be okay and know that I did not do one thing to deserve it. I did what the doctors said, but so do many cancer patients. I prayed hard and many prayed for me. I feel prayers being said as they lift my lilting spirit. Many people with cancer pray and things end differently for them. I am no more or less deserving of this NED proclamation than any other soul on the planet. It's not fair. I don't understand. It leaves me asking...why me? I am sad for while, but push past it. Sadness is a drain on me and I find it a waste of the precious time I have been given. It is okay for me to be sad I just will only stand for so much and then push past it looking for the happiness that each moment might provide. I will not allow myself to become chronically poignant (defined by MW as "a keen since of loss and sadness"). No, I am basically happy and like to keep myself engulfed in happy thoughts. I reach over and grab my husbands hand and tell him I love him. He returns the words in kind and then asks me if I am okay. I nod at him and dry my tears. "I am more than okay" I think "NED. I am alive against incredible odds and thriving against astronomical ones. Drink it all up!" I tell myself, "Drink it all up!"

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Excellent post Michele. Agreed, best Christmas gift ever!! Glad to hear such wonderful news.
Michele likes this comment
I am crying.. Michele.. so incredible.. just amazing how we go through so much and have to compartmentalize it all. Your really good at it. It is a gift every day and I am humbled by your outstanding courage. I am so happy you have your husband to love and hold his hand. It's so special... like you... thankyou for sharing.. I felt like I was with you the whole time and in spirit I am and I pray for your continued NED and so grateful to God for it . Happy holidays my friend... hugs and love Sabina
Marian, Michele like this comment
Fantastic news! You couldn't ask for a better xmas present. Now that I have healthcare again come Jan. 1, I'm hoping I'll be able to get on Dr. Engs books soon. tj OD@aT
Michele likes this comment
I couldn't wait to get through your blog to find out what your results were. Then I got goosebumps all over. What wonderful news. With all my good wishes & very Happy New Year Annabelle
Michele likes this comment
Amazing how much you can manage to remember and record, and thanks for inspiring all the others here...So glad too that you will be able to contribute to the research that will help those who come after us. Happy New Year!
Michele likes this comment
Michele...what a wonderful Christmas present to receive. I'm so happy at your good news. You have a special place in my prayers. Mari
Michele likes this comment
Michelle, I am do happy for you! Wonderful news! Keep enjoying life. As a fellow stage 4er, I want to add that we are so not in control of our life. No one know the day or time of our end in earth. No one. So enjoy, and drink it up!
Michele likes this comment
Michele, I am so very pleased, so ecstatic about NED for you. I really relate to the paradox you discuss about praying for recovery and some getting it and others not. I am so grateful that you are here now, living a preciously, appreciative life, yet without a full understanding of "why me", and knowing no one can answer those questions. I love your strength and wisdom. Just think...Your participation in this study, financially sponsored by a kindred soul, may in fact save someone's life a year from now, 10 years from now or a 100 years from now. It's that "Butterfly Effect" we hear of and you are the flutter of that wing.
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I like that. A flutter of a butterfly's wing :)
It is such a privilege to read your posts Michelle! thank you for sharing in the way you do. Am also so pleased for you for NED result with such great response and outcome of your treatment. Congratulations too for participating in that study. I love the idea of the 'butterfly affect' and know that your flutters have already been felt across the world. Well done!!
Michele likes this comment
Michele What a wonderful post! I am so very happy for you and yes I think a lot of us have that survivor guilt thing going. I often ask why me for getting it and why me for surviving it! Merry Merry Christmas this is the best gift you have been given and you DESERVE it! I am praying that this continues for you and I really don't see why it wouldn't.....You have brought such a smile to my face....Take care and keep that fight up!!!
Michele likes this comment
Wonderful! I am so very happy for you, my dear friend. May NED and you be BFF's! Happy New Year and may you be blessed with more good news in 2014!
Michele likes this comment
Hallelujah, what wonderful news! What a gift you have for writing. I think we all feel as if we are right there with you when reading your posts. What a wonderful Christmas present to receive a NED diagnosis. Happy you have a chance to be part of a research study. You will help many! Thinking of you and wishing you continued NED in 2014 and the future!
Michele likes this comment
I love your honesty and the way you see things. Today and every day is a gift. Enjoy and be happy! Hugs, Linda
Michele likes this comment
Wow. Happy New Year. I love your spirit. I agree sadness is a waste of time. I've just learned that myself. So happy for you!!
Michele likes this comment
Great read. Love your spirit. You don't need survivors guilt however. NED is a good thing and everyone is happy for you to have it.
Michele likes this comment
Thank you for such a wonderful post. My grandmother used to say that "God gets in your boat". Not because you deserve it - but just because He does. He only knows why or when. I feel your joy - and am so happy for you . - Leanne
Michele likes this comment
YEA!!!!!! I'm so happy for you my friend! That is fabulous news! :)
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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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