For now I tread on...

My phone rang late in the afternoon on Wednesday with a hospital number indicated on the caller ID. Only 24 hours had lapsed since my EBUS bronchoscopy with ultrasound and biopsy (clearly that was on Tuesday) so this was it, "the" call. The circumstances leading up to said biopsy were typical. When I say typical, I mean typical for me which immediately constitutes it as highly unusual. After an initial visit to see BDM, CT surgeon extraordinaire, I had been referred onward to a pulmonologist. BDM informed me that the node in question was in a very difficult spot very near to my pulmonary artery and as far as he was concerned "inoperable" at least for him. I can't tell the mix of relief and fear that flooded over me at those words. First, after my last lung surgery experience (and this one promised to be much worse), I felt relief flood my system. No "sawing" my chest in half, no chest tubes, and especially no severe pain...indescribable pain. That relief was short lived as the realization of the inability to rid my body of this new growth by simply cutting it out seemed nearly impossible. Follow that with the information that BDM had already discussed the case with my radiation oncologist and he thought maybe Cyber-knife, but it would be difficult. A visit to MD Anderson was again brought up and an attempt at a biopsy via bronchoscope was suggested as a test I could have before I went. BDM had even talked to the only pulmonologist in town. He warned me that it may be difficult to approach from the broncho-system, perhaps impossible. Either way, it was time for advice from the big dogs at MDA. My local support system was with me at this appointment (thank goodness) as discussed options. My husband and my besties helped me weigh all the options out loud. We decided to do the bronch - EBUS and head South to MDA no matter the outcome. We know not what this growing area is but we do know that regardless of what the text books say, I am not a typical anal cancer patient. None of my presentation has been how it should be according to the expert written testimony. This both scares and comforts me. You can deduce for yourselves where the fear comes from but I want to say that the comfort comes from the fact that I am not typical somehow increases my odds of outsmarting the beast and beating the piss out of the odds. So far so good on that.

So my scans were dispatched over to the pulmonologists office for a look see. The PET was actually already on his desk and he was waiting on the CT, which, being the patient that I am I not only had a copy of I had it with me. A new disk was made from my template to send to him and my bestie, Laurie, took the other as she planned to hunt up my newest consulted physician at the hospital in the morning. True to her word, my bestie found him at the hospital and then called me to see where I was and if I could come over to where she was. I was very near by and met her at one of the nurses stations. She called him. He was over in the intensive care and told her to bring the scan over and he would look at it. She asked him if I could come too and he said yes. (I like him immediately). We head over to the ICU and he is charting at one of the stations. He smiles warmly at us and takes my hand and gives it a squeeze. "Let's see what we've got here." he says. He takes the disk from Laurie and pops it in to the nearest computer and up pops my CT in all it's glory. He rolls through the slides quickly until the offensive spot appears. He rolls back and forth watching the node apear and disappear from the screen as he advanced or retracted the slides. He turns to me and tells me he is not sure he can get to it because of where it is located. It is deep on the right side. He says it is definitely in the middle lobe. He wants to look at it with the PET before he decides whether he should try it. He asks if I could do it Monday or Tuesday and tells me it will be at Wesley Medical Center as they are the ones with the EBUS equipment he would need if he decided to attempt it. I agree. He then takes out his cell phone, types in my name and asks "What's your number?" I really dig this doctor. He gets me. Completely. Two hours later he calls me from his office and tells me he is 75% confident he can hit the mark if I want to try it. After a few minutes of discussion I want to go for it and so does he. He educates me on the procedure and says he will try for Monday or Tuesday and his scheduler will call me in a bit to get the referral all lined up and the paperwork. By the end of the work day it is all set. Tuesday. First case. Be there at 5:30 AM.

We arrived at the hospital at 5:20, it's how we do, and besides having to wait for the department to open my test admission was uneventful. My bestie, Marie, was en-route to be by my side too as my husband and I were led to the Endoscopy Unit. I had 2 nurses to myself and they busied themselves asking me questions like when I had last eaten, getting me a gown and checking for my consent. I was feeling nervous when they told me that my "friend" propofol would not be used for sedation, that instead, versed and fentanyl would be administered. They assured me I would not remember a thing as one of them place a tourniquet on my arm. Not one miniscule vein popped up. The nurse attending to me looked at her partner and said "Maybe you ought to try this one." as she angled my hand an arm for her to get a better look at the dismal crop of choices. "Too bad you can't just use my power port." I sighed. My nurse immediately grinned. "You have a port?" I told her yes and she offered to access it assuring me they were all trained at Wesley to do so. I instantly relaxed. Maybe this was not going to be so bad after all. The port was accessed and once the doctor had indicated he was on his way the nurses took me back to the "bronch" room. I wanted my bestie to come along and the gently said no so I kissed my hubby goodbye and rolled away on my cart to this unfamiliar procedure. After having me breathe some lidocaine (numbing) mist into my lungs for about 5 minutes they began to numb my throat with what appeared to be a large old fashioned perfume bottle. You know, the ones with the rubber squeeze ball. Except this was not a pretty perfume bottle but a stainless steel probe with bitter, jack-nasty tasting contents probably how perfume really tastes. The doctor arrives and I figure I am "in for it" when I don't even feel one bit sleepy but she injects some medicine as they lay me flat. He asks me a couple questions as a towel is laid across my eyes. I strangely don't feel nervous anymore. Next thing I realize I am aware under the towel still and start coughing. I hear him order "2 more milligrams, please" and drift back to the place that I can't remember. My next memory is being back in the area I was admitted to. Sitting on my gurney and coughing. They came with my clothes and some instructions which I don't remember. When I pulled back the covers I realized I had peed my underwear and sweat bottoms. This is what comes from coughing when you are sedated and unable to squeeze your kegel muscles together. I stick out my bottom lip and my husband just smiles at me and says "It's okay honey. Don't worry about it. We'll take care of it at home." They allow me a blanket for my lap and my husband goes to get the car. He takes me home, helps me change and puts me to bed for a long nap. I awaken a couple times to go to the bathroom and cough, but it is a good rest.

So here I was 24 hours later on the phone about to receive my path report. I was alone in my living room. The doctor identifies himself. My gutt sinks (it always does) and I catch my breath. He starts by explaining how difficult it is to be sure that he was actually in the lymph node and that he had called and discussed my results with both Dr. Milfeld and Dr. Johnson. Finally I say "So what did it show?" He responded with what sounded like reading off a paper "2 red blood cells, 2 white blood cells and a couple of lymphocytes." I started feeling relief and said "No cancer?!" He explained to me that it did not show any cancer but then repeated the information on accuracy. He told me the sample did not have evidence of inflammation and he could have missed the spot by 1 millimeter so while their was no cancer in the specimen the results were inconclusive and that my doctors were in agreement that I needed to head to MD Anderson for further evaluation. The relief that was washing over me ebbed and then receded back to where ever it is relief is stored and I felt myself begin to tread water. I have treaded water in these seas before. There are no boats, no life raft, no sharks (I hope) and no land in sight. Just me, going nowhere, waiting for someone to come along and tell me which direction to swim. It's been over a week and I still don't know where I am headed. I am tired, nerves frayed, emotions running high, feeling a pressure to perform, but what I don't know. I need a plan. I operate best when there is a plan. I can start swimming once there is a plan...but for now I tread on.

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The relief that was washing over me ebbed and then receded back to where ever it is relief is stored and I felt myself begin to tread water. I have treaded water in these seas before. There are no boats, no life raft, no sharks (I hope) and no land in sight. Just me, going nowhere, waiting for someone to come along and tell me which direction to swim. It’s been over a week and I still don’t know where I am headed. I am tired, nerves frayed, emotions running high, feeling a pressure to perform, but what I don’t know. I need a plan. I operate best when there is a plan. I can start swimming once there is a plan…but for now I tread on. ************************************************ And that brings a tear to my eye that I quickly wipe away so you won't see, followed by a big hug. Tread on, you sound very strong with a wonderful hubby and friends. You will beat this thing. Tread on. John
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Michele-- I read your post with a lump in my throat. Inconclusive results was not what I was hoping to hear. How ironic that while I was reading this, I had a brand new set of sheets washing in my machine for the second time in less than 2 hours, thanks to a washing machine that felt it necessary to deposit oil or grease or something on them the first time, leaving them covered with spots. Let me tell you, I was pissed when I pulled them out of the washer the first time! But not nearly as pissed as I am about my dear friend having to deal with spots in her lungs that may be deemed inoperable. This kind of news really puts things in perspective. I'm glad that the second washing removed the spots on my sheets. If only it were that simple to get rid of those ones in your lungs. I am praying for you and hoping that MDA will have answers and a plan for you. Keep treading until then. You are strong and I know you can do it! Love and hugs-- Martha
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Treading water is hard work. You are in my prayers.
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I also hope there are no sharks, Michele. It may be inconclusive results but it may be there is no cancer, and that's what I'm praying for. Hugs, Mari
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So, Michele, do you feel the procedure was worth it since it was inconclusive?? I am just wondering. I guess we never know until we TRY, right? I wish you luck and will continue to keep you in prayer, as always. You've given everyone a very in-depth portrayal here. Very GOOD! I enjoy your writing. Just sorry you have to go through all this to do so. BIG HUG! Carol
I do think so. I never have been comfortable belonging to the "coulda, shoulda, woulda" club. It did not hurt, was fairly uninvasive...just inconclusive. I can't go back, right? I can just tread on. :)
Dear Michele, My heart is with you. I am praying that you will have direction soon. Thank you for expressing your feelings , as you capture so much of what I also feel , encapsulating it in a way I never could. Leanne
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As usual, with your posts, I both smile and cry. I am always on the edge of my seat and completely wrapped up in your writing. I look forward to the hope that you give and I love that you fight and educate and share all of this with the rest of us. You are correct, you are different, and no matter what you are a survivor! Go Michelle!! I'm treading along with you and can't wait to hear your next success.
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Michelle- You are an excellent swimmer. Keep treading. Hopefully answers will come soon. I think I speak for everyone here that we are there in spirit treading along beside you - to hold you up if needed. Many prayers and hugs, Linda
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Michele - there is nothing I can say that matches the eloquenece of your post and the emotions that shape it. You are truly an extraordinatry person and I am grateful to be even your cyberfriend...A hug to you - I wish I could hold you up, but I do so in my heart.
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Michelle, You are so strong. Hang in there. The plan is there. God is watching you. He has the plan, and he will hold you up when you can no longer tread while you get the plan.My thoughts and prayers are with you.
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Dear Michele, It's very frustrating this disease..you are right when you say that anything having to do with you is beyond the norm..whatever that is...it seems this cancer is really not so predictable...I think it is unusual enough and the last stats don't reflect what may happen...that its hard to predict how fast, at what stage and where this will spread and what keeps it at bay...why does it advance in some people and not in others etc,,,people such as yourselves are sort of setting the trend..not much consolation I know... I am very glad you are going to md ..I do think they will have a plan...I feel like you do...you have to know what's next...we are all here for you and that's something you can count on:) My best, Lori
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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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