Now You Know the Rest of the Story

Before you begin to read this entry I want to warn you that it is quite long so you may want to get a snack and a drink of choice because it will take longer than 5 minutes to read it! I am sure that you have read my very lengthy entry from my pain management adventure. As long as it is there was something I omitted...on purpose. The time has come to fill in the blanks that are invisible except to me and few others. When I was visiting the pain management center, when Rita came in to check on me after my injection, and after she had reviewed my MRI films with the doctor she asked me a question. "What, exactly, did the neurosurgeon say about your MRI?" I repeated his exact words "I am confident that this is just scar tissue and the area looks stable." She shrugged and said, "Well the doctor is questioning tumor regrowth and wants to compare this one to your original diagnostic scan." She asked where I had that scan performed and jotted down the information and date of the scan. She said that she was going to request a copy. I felt somewhat conflicted because my neurosurgeon is "the bomb" on every level and I don't think he could "misread" any scan, but the "seed of doubt" is quick to take root once it is planted. Feeling only mildly concerned I left the office. I alerted my Bestie Laurie and my husband but otherwise kept the news to myself and asked that they keep it on the DL as well. No sense in raising the dread alarm for nothing, right? That afternoon my family doctor's office called and confirmed that the medical records had been requested by pain management. "Good job!" I thought. The pain management center seemed to be on top of things. This was a holiday weekend so I was expecting to wait until Tuesday to hear any news. Tuesday came and I received an e-mail from the pain management center saying they were still waiting on my medical record, they would call me after the records had been received and reviewed, and "have a nice week".  I, of course, being a veteran of the war on cancer know that a phone call to the center that the medical records were coming from was in order. I called and got a machine...naturally. I left a message politely insisting that they get back to me today about said medical record. Surprisingly they called within the hour saying the MRI disc had been delivered by courier the previous Friday. "Hmmmm." I think. After several phone calls the wayward disc is located and placed in Rita's box for review. So I figure I will hear something that afternoon. That doesn't happen. I call the next day (Wednesday), late in the morning figuring they have had enough time to look and my sciatic pain is on the rise. I had to leave a message for the nurse...naturally. I heard nothing that day. Thursday I finally received a call from the nurse saying the films had been reviewed and although they "think" they concur with the neurosurgeon they would like my oncologist to take a look. Now, I have been trying to keep my antenna "down" through this whole thing, but it was definitely "up" at the moment. I told them I would come by and get the scans and take them over. On my way there, I call my oncologists office and lo and behold he is on vacation. Out until next week. Ugh! I call my bestie and after we talk I decide the time has come to re-involve radiation oncology. I arrive at the pain management center and go to the desk. I take in my wallet in thinking they will need my I.D. in order to hand over the scans that they assured me would be at the desk. The receptionist looked at me like I had on a blue beehive wig and there were snakes coming out of my ears. He had no idea what I was talking about. He disappeared in the back to look for my scans. Out he came with an envelop and I asked if they were all in there and he said yes. He handed me the envelop and I headed back to my car. As I was fumbling for my keys I switched the envelop to my other hand and I immediately noticed that it felt "thin" to me. Too thin to be 3 discs. I immediately open it and find 2 discs inside. The one from July and a disc that was labeled with another patients name. I immediately walk back into the clinic. I hand the disc to the receptionist and say "This is not mine and there are only 2 discs in here." He kind of chuckled at the error (I saw NO humor in this). He then disappeared to the back again. He reappeared with a disc. When I looked at the writing on the disc I noticed it had the July date on it as well. I said, "This has the same date on it as the one I am holding. I need the one from November 2010 and the one from January 2010" I am starting to get upset and obviously getting too loud because an MA comes and ushers me quickly to the back. She finds an unused exam room and has me sit down. I try to explain that there are 2 discs missing. She tells me that she will get it all sorted out and just to relax. (I hate being told to relax.) Shortly thereafter a tall thin girl with her blond hair pulled back came in to speak to me. She had a condescending tone which turned me off completely. I was angry now. I demanded my discs. She told me to "calm down" and "give them a chance". I was being pushed to the edge now. She left to go look for discs. When she came back she was holding my MRI from Nov 2010. I asked about the third disc. She looked confused and exclaimed "That's three." I had had enough. I tried to explain that the January disc was missing and if they didn't ever have it then they were comparing two MRIs that were the same one and of course it would show "no change". She could not get this through her head. I am "all done". She says she is going to talk to the doctor and get to the bottom of things. When she returns she tells me (in the condescending tone) that my doctor was on vacation and they had his partner look at it and he said it was a duplicate scan that was delivered, but not to worry that the MRI looked ok. She then tells me that my pain clinic doctor tends to "over read" scans and I am probably just fine. Are you kidding me right now? I asked her if she had ever had cancer. "No." she said. "Oh. Then you know all about how I feel with one scan having having three different opinions given on it." She sat there with her mouth hanging open and I said "Nobody is listening to me!" I got up and left. When I got to the car I text my bestie and said "I am calling Teresa!" (Radiation oncology nurse extraordinaire).  I called the cancer center on the way over. My favorite receptionist Eunice had been replaced with the equally wonderful Mellany. She listened to my whole story. She said she would take a message for Teresa and suggested I drop the scans off immediately. She said they were very busy that day but she would do all she could to help. I drove directly to the cancer center. I arrive at the cancer center parking in the familiar "patient only" parking area. I walk in with all the discs in hand. There, in Eunice's spot behind the desk, sat who I presumed to be Mellany and right behind her stood Teresa. Mellany smiled at me and asked "Are you Michele?" I nod. I am so relieved to see Teresa I am choked up. Teresa looks at me and asks "Honey, what's wrong?" I burst into tears. I don't know if it's out of relief or frustration. Teresa immediately comes around the desk to hug me as I try to explain about the MRIs through my tears. She hugs me and takes me to the back leaving my disc with Mellany to sort through. They are busy but she is nonplussed and places me in an exam room, shuts the door behind her, sits down after retrieving a paper towel to write on and takes out her pen. I tell her the whole story from the returned sciatic pain to the MRI interpretations and she listens intently and takes notes. I tell her Dr. Johnson is on vacation. I told her that Dr. "Cutie" Kelley had left me Dr. Anders name and said he had capable hands should I need anything. She assures me that although they are busy that she would make sure he saw all three scans that day and she would call me no later than tomorrow. As Teresa is leading me back out to the waiting area we run into a tall man with salt and pepper hair, kind of long, combed straight back. She takes a minute to introduce us. It is Dr. Anders. I shake his hand and he throws a questioning look with his pale blue eyes at Teresa. "I'll explain in a minute. You are going to help this woman." she said as she guided me past him. "The patient in room 6 is ready" she tells him. "He'll help you." she said "Don't worry." In the waiting area Mellany and I sort through all the discs and somehow I am not surprised that all three scans are there. There were 2 on one disc which apparently the pain center didn't pick up on because they never opened it. I depart relieved that things will get sorted out in this place that contains the people who saved my life. I return home and text my hubby and bestie that the cancer center has it all under control. About 30 minutes later my phone rings and it is Teresa. She asks me if I am at work. I tell her that I am at home. She tells me Dr. Anders has read my scans, he is ordering a PET scan and he wants to see me right now. "Right now?!" I ask. She said yes. I agree to come back. When I hang up I say the word shit loud and hard. I repeat it for a few seconds. I dial my husbands cell, no answer. I call his office and a secretary answers. I tell her to leave him a message to call my cell ASAP. She asked if it was an emergency. I say "Well, no one is dying, if that's what you mean." She chuckles and I don't. (I hope not...) I text him and then call my bestie. After saying shit a few times out loud to her I tell her they want to see me right away and that he wants a PET. She is calming to my soul and says she will meet me there in 30 minutes. I get in the car. My phone rings and it is my husband and rock. I tell him the plan and he says he is on his way. We hang up and I am confident I said the word shit one hundred times on the drive over and when I arrive at the center my bestie is crossing the street from the hospital. We walk in together and all I can think is "De ja vu." Mellany acknowledges my arrival as I cross the threshold of the entry and she checks me in and takes my insurance information and verifies the referral is documented. My bestie and I sit by the windows and I carefully seat myself on my left butt cheek as my right one continues to scream at me. Teresa comes to get me and Mellany said she would be on the look out for my husband. Teresa weighs me in and then takes us to the consultation room. We sit at the table. It's the room where I had my initial consultation after my diagnosis and I notice we are seated in the same spots as we were that day back in 2010. Shortly thereafter Teresa brings in my husband. He says something about the room being familiar and we laugh for a minute with Teresa as we recall our "trouble maker" type behavior the last time we were in this room. It lightened the mood. She said the doctor had taken the scans across the street for a second opinion and that he would be back shortly and then she left us to wait. We all sat in anticipation. I was flanked by my emotional support team perched on my left butt cheek, trying to relax. A gentle tap on the door announced Dr. Anders arrival. He sat in the only available chair. Well, I say "sat" but he actually kind of "lounged" on the chair sitting sideways as relaxed and at ease as Dr. Kelley ever was. I like him immediately. He starts by saying that it's true that my MRI looks pretty much unchanged. He complains that the problem is that it an MRI takes such a small picture and that it doesn't encompass the whole field. The return of this pain could simply be a radiation side effect. He then said "I don't want to scare you but..." I laughed right out loud interrupting his sentence. He laughed too. "Gosh, Dr. Anders, do you think my cancer could be back?" I asked in the most shocked voice I could muster up. He laughed again and said "Maybe." He then stood up and asked if I minded if he palpated where my pain was. I told him I really didn't want him to touch it because it really was quite tender. So he pointed at different area and we got the spot of the worst pain without him touching me. Then he explained that we needed a PET because the original pain was back and that would tell us everything. I agreed. I joked with him that he had some "big shoes to fill" because I adored Dr. Kelley. I did tell him he was off to a good start because he didn't ask if he could do a rectal exam and that it seemed to me that Dr. Kelley always thought he had to do one. "You didn't tell me your butt hole hurt so I didn't think that needed done. Does your butt hole hurt?" he teased. "It doesn't now!" I laughed. Teresa was to set up my scan and call me to tell me when it would be. We all depart feeling better that things were under control and this was the right thing to do. Teresa called Friday and my scan was scheduled for the following Thursday. I was given the usual instructions. I decided it was necessary to tell my children that I had a PET scan ordered and so I told them. With so many people "in on the secret" now it felt like common knowledge. I actually had a more relaxed attitude and reminded myself that I would be enduring close surveillance my entire life. Thursday came soon enough and I have to laugh at the irony of living in a place that boasts 285 days of sunshine and it was cold and rainy and gloomy. It felt so...predictive (LOL). I reported for my scan at the cancer center at 8:45. The same young man that had done my previous PETs was still there. He recognized me immediately and we caught up with each other while he prepped me to become radioactive! By 10:45 I was leaving and I text my besties, daughter and hubby to tell them I was headed home to drink fluids and make "nuclear waste" of the substance they injected me with. I stop and get some french fries (my favorite snack) and then home to do the internal "cleansing" by ingesting copious amounts of water. I answered some work e-mails and started some laundry. At 2:30 my phone rang. I recognized the number of the cancer center immediately. I took two deep breaths and answered. It was a gal that introduced herself as "Desiree, the scheduler at the Kansas Cancer Center". We exchange pleasantries about the weather and she then told me that Dr. Anders wanted to see me at 1:00 on Friday. At this point my antenna are fully extended and up. I hear myself speaking to Desiree in a calm pleasant voice and saying that I will be there. On the inside I am just sitting with my mouth hanging open as I did the first time I was told I had cancer. I find myself saying goodbye. I call my husband immediately. He is silent a minute but quickly recovers and assures me that everything will be ok and he'll be at the appointment. My sister assures me she has my "6". My husband comes home from work and takes me to dinner and I order french fries again and a margarita...if you are going to live, live big, right? I slept like a rock in-spite of my worry and when I awoke at 4:30 AM my husband was there to wrap a reassuring arm around me. I laid around in bed until 8:30 using my iPad and texting on my phone. I came downstairs finally and poured myself some coffee and made myself as comfortable as possible in the living room recliner to work on this very blog you are reading. I busied myself with laundry and talking on the phone with a few close friends and family. I showered and dressed and at last called my daughter asking what I should wear to this "reading". She laughed and said "Mom, your cancer might be back and you're worried about what to wear. This is not normal." We both laughed again. After we hung up I finished getting ready, collected my new blue notebook which had only a few things written in it and headed down to the cancer center. I listened to the radio trying to calm myself. When I pulled into the parking lot I immediately spot my daughters car. My husband's truck is nowhere in sight. I assume my bestie is already waiting inside. I take a minute to read the few encouraging texts from my sissy and my other bestie. My husband rounds the corner and I get out of my car, my daughter joins me and we wait for him. We walk in together and I immediately spot my bestie, Laurie, waiting for us in a chair right near the door. Mellany gives me an acknowledging nod and says she will tell them I am here. It's not long before a nurse comes and calls my name. It is not Teresa but that's okay because I am not here to see her. She leads our little group down the hall and I spot Dr. Anders immediately. I smile at him, say hello and inform him that I don't go anywhere without my posse. "I can see that." he said. I noticed the clinic was empty. No patients at all. Just me. The nurse places my chart in the door of room 3 and we file in while she goes next door for another chair. Dr. Anders and his PA Josh follow us in and he dispenses with the niceties and cuts right to the chase. I really like this guy! "Do you want the good news or the concerning news?" he asks. I think for a minute and say that I want to start with good news. He immediately tells me that my pelvis and liver look clean and that my sciatic pain is most likely caused by scar tissue. I take a big breath and say "That is good news!" I look at my husband and ask "What's the concerning news then?" He looks at me straight in the eyes and tells me that I have a nodule in my right lung. It is small, but concerning none the less. It could very likely be my squamous cell cancer (who has butt cancer in their lungs?) It is too small to biopsy right now and it needs to be followed very closely with CT scanning every 2-3 months. If it gets bigger we will have a cardiothoracic surgeon "pluck it out". It would be "no big deal". I said "For who? You or me?" He grinned broadly and told me he had read my chart closely and my book. He turned to my daughter and said "You are Maggie, right?" to prove he had done the reading he claimed to have done. I really, really like this guy! He spends a bit more time discussing my future care and the plan to monitor this problem spot in my lung. He says I can try massage therapy for my butt pain and encourages me to keep going to the pain clinic. He informs me that he will be personally reading all my scans from now on. He then says he's late for a procedure at the hospital and I like him even more for taking the time to give me my scan results himself. I need to follow up with my oncologist and he was going to send him a letter. We all shake his hand and thank him. Sigh...he may be my new crush. (Sorry Dr. Kelley) Somehow he managed to deliver concerning news without creating a panic. Don't get me wrong. I am concerned and a little scared. I have wondered the last 2 years how I would handle a bad scan result. I always knew it would come. I read. I have a small network of friends across the country that have stage 4 anal cancer. It can metastasize any place and the lung is a common spot. I think to myself "I am handling this just fine!" We all trek out to the lobby. Jerry kisses me goodbye and heads back to work. I hug my bestie and she heads back to work as well. I decide to walk across the street and just talk to my oncologist's office and sort out my upcoming appointments. Maggie agrees to go with me. I call my sister on the walk over to fill her in. In the elevator Maggie asks me a question, "Are you still in remission mom?" I tell her that I am not sure. I guess that it remains to be seen. So now you know the rest of the story! 
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Oh, Michele, I read the whole way thru hoping at the end you'd say it was a false alarm. It is such an ordeal to live from scan to scan just hoping the cancer hasn't come back. You and all my BFAC friends are always in my prayers. Hugs, Mari
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Michele, like you, I have often thought about how I would handle bad results on a scan. I always get my results same day from my next door neighbor and dear friend, who is a radiologist where I get scanned. Even though he never officially reads my scans for the impression, he always looks them over after the reading radiologist has dictated his findings to make sure he concurs. My biggest fear is not how I will handle getting bad news, but how agonizing it would be for my dear friend, Dr. Mac, to have to deliver that bad news to me. I hope that little spot in your lung decides to scram on it's own and will be a no show on your next scan. I would tell you not to worry, but I can not ask someone to do something that I, myself, find impossible! Just know that all your warrior friends are concerned for you and are praying for you. Sending you love and hugs-- Martha
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Dear michele, I read your post wi5h the same lump in my throat that I have experienced many times..I felt your anxiety and every bit of fear...I know how each sceenario felt like I was there...itis funny how that happens..I am gld iris in watch mode and you have such great docs..reading your story I thought how important it is for each of us to be our own watchdog and how unfortunate it is that some medical people don't get this..as I read I saw all the potential places things could have gone south if you had not been so cautious..unbelievable really...my thoughts and prayers follow you and I am hoping this is just one blimp on the screen of your continued recovery and tha it will not be anything..love to you:)
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Wow! Well told and scary. You are in our prayers.
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Dear Michelle. As I was reading your blog I was with you every step of the way and lived through it with you. I too had a scare so know how it feels BUT it was wrong. So hang in there. Still trying to get your book but will persevere. Take care. Hugs Annabelle
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 Yes thenkyou I did make contact with your publisher. My problem is as they cannot take payment by credit card I have been trying to work out a way to pay as any sort of transfer of money is very expensive to do. Annabelle
 I will speak to him about this. No worries... Michele
 Annabelle, I met with my publisher last week and I wanted to be sure you got a signed copy. He said he had sent you the shipping information. Did you get that message from him? Thanks for the kind words! Michele
Michele - Amazing post. When you were explaining all the problems with your scans, etc., I could feel the frustration and could relate to the fact you have to stay on top of EVERYTHING and sometimes want to scream at everyone, "I AM THE PATIENT, COULD SOMEONE PLEASE BE THE CAPTAIN OF THE SHIP, NOT ME". You have to be SO pro-active and stay on top of everything AND be in pain both mentally and physically. Thank God for Dr. Anders, he sounds wonderful! Where can I get your book? I would love to read it. Prayers and hugs for you!! Linda
 You can go to the Free Press - Marion County and click on the on-line store. It's called "If You're Not Laughing, You're Dying". It's near the bottom of the page :) I'd post the link but as you know that is understandably not allowed on here :) Thanks for the kindness, Michele
Michele, . . . . .!! I'm teary right now. Well, bless you for staying as calm as you did during the disc fiasco. I might've raised my voice sooner. One can take only so much frustration. If it makes you feel any better, a friend of mine who was diagnosed with Stage 4 Colo-rectal cancer 3 or 4 years ago and recently had a relapse (two doctors read her scan with different opinions as well), told me," I can REALLY say I'm a SHITHEAD now!" Her cancer has metastasized to her brain. Not a funny situation, but something funny to laugh at. XOXO Carol
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Well Crap!! My reply just went into cyberspace due to "connection problems." AUGH! Your blog brought me to tears (mist, not full out sobbing) You remained calm longer than I would have. One can take only so much frustration. If it makes you feel better here is a quote from a friend who has recently been informed her Colo-rectal cancer is now in her head, and is getting chemo and rad (after recent surgery). "I can really say now, that I AM a SHITHEAD!" Not a funny situation, but something funny to laugh at. XOXO Carol
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I give up trying to reply to this. (see my blog note) Hang in there chickee. XOXO
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Michele, So well written/expressed, felt like I was right there with you, holding my breath...Big hugs to you...as was written hope th next scan comes back just fine...Jeanne
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Oh Michele. What a story. BUTT, this is not the end!!! You will publish a sequel and this will be part of it...and have a big signing party years from now. We'll all be there and meet your family and your besties, and drink a toast to these wonderful doctors and nurses. You are pretty awesome. XOXO
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Michele, what a writer you are. You had me on the edge of my seat and I felt the frustration and concern, etc that you did. I had nodules in my lungs several years prior to being diagnosed with anal cancer and so far they have remained unchanged for eight years. I hope the same for you. Or better yet, that they completely go away. Thank you so much for sharing. Keep us posted. You are an amazing woman!
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Wow - not sure what to say other than I hope that it is nothing and can be plucked out if need be. You are very strong! Thinking of you
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Michele, I'm floored by the calm you've shown dealing with all this. Your attitude is amazing.
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Shit, shit, shit...your writing is captivating...I wish it was different story...when is your next appt?
 I am waiting to hear from my oncologist ...naturally :)
When I read this I felt so much frustration for you and the hell that many of us have to endure. This is brilliantly written and gives us all courage to insist on getting the correct answers. We all need to stay strong and ask the right questions. Thanks. Big Hug Marcia
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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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