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My Unmentionables

So much has happened this past month and it is high time I free it from my mind so I can have some peace inside. So here goes. From my last entry the world is aware that my hip joints have rotted most likely as a result of the extraordinarily intense pelvic radiation that I received in 2010. I’m definitely not complaining. That aggressive radiation saved my ass, literally. I was referred to the orthopedic doctor of my choice. They stopped trying to tell me who to see a long time ago and as long as my insurance is accepted, I can have whom ever I choose. I made an appointment with a long time friend whom I have known for 30 years and paid him a visit. He concurred with the interpretation of the radiologist who read my MRI. I have bilateral avascular necrosis (AVN). It’s not as gross as it first sounded to me, but it is the source of my pain. And although only my right hip hurts it’s on both sides and strangely enough the left is worse than right. There are no exercises, or injections or therapy that can be done really. The best possible solution is total hip replacement. My hip sockets look great so that simplifies matters. They only fix what hurts, so I am scheduled for total right hip replacement surgery on May 8th. That has already passed, in case you didn’t know, and clearly I have not endured a major joint replacement. Either that, or I have miraculous recovery super powers and we all know that’s not true. 

My surgery was contingent on getting the “all clear” from my oncologist in Houston who at that time I was set to see on April 24th after having a PET scan on the 23rd. I truly anticipated no problems there and spent the few weeks of waiting in between prepping my schedule, my home, and my clothing for my total hip. My mother booked some flights to come in and help me after my dismissal from the hospital. My daughter and husband put in for time off for the day of my surgery. When my husband and I left for Houston on April 22nd we left bright and early so we could stop at the premium outlet mall on the way and do some shopping. We shopped and my sweet husband was loaded down with shopping bags with all my purchases. After checking in to our favorite Courtyard near the medical center we went to Saltgrass for my high protein, low carbohydrate meal. The special diet required before PET scanning. We slept well.

We were up early the next morning to get me checked in for my lab work. And although we hadn’t been to MDA for three years it was like riding a bike. We drove straight to infamous Parking Garage 10, had the typical trouble with the entry gate (damn thing never reads a credit card on the first swipe), and made our way the lab. I was ‘processed’ at the lab and when they asked for my patient I.D. number it tumbled out of my mouth without thought, like a breath. I received my hospital wrist band. My blood was drawn and we started the long walk between buildings to the area where all the scans are performed. This distance even requires a ride in a transport cart. They are kind of like those transporters in the airport that shuttle people that have a hard time walking between gates. You know, the ones that beep really loudly? This one doesn’t beep and you can tell the people driving them love their work. They are friendly and kind like most all the people at MDA. We arrived in the waiting area, which was packed to the brim. It always amazes me at just how many folks have cancer. It’s heartbreaking really and completely surreal that I (and my family) am among them. How is this real? (That’s off track. Back to the writing at hand.) I am called back for my scan and placed in cubicle 7. It has a giant, back lit garden scene in it. All the cubicles have some sort of peaceful glowing scene. I like this one and feel like I have seen it before. After all the scans I have had at MDA I am certain that I have definitely been in this particular confined area before. The nurse comes in and starts my IV and then goes off to acquire the radioactive sugar that is to be injected into my body. She returns with the tiny syringe encased in a very large lead lined cylinder designed to protect the handlers from exposure. She injects it slowly followed by a saline chaser. I can taste the saline in my mouth within a few seconds. Tastes like plastic to me. Bleh. She shuts off the lights and tells me to rest for the next hour. I fall asleep and dream about riding a bike through a garden. Time passes quickly when you are asleep. In no time I am awakened and led back to the hallway where I am told to pee before the test. Even the bathroom door is lead lined. I wait alone on a chair just outside the bathroom door. A nice tech comes next and leads me to the PET scanner. I am so comfortable on the table they strap me to that I nap again. I don’t dream. The scan is over in 30 minutes and I am awakened, unstrapped and told to “have a good day”. I inform them all that I am going to the Astros’ game that evening and they all say “have fun”!  We did have fun. Club level seating, ball park food and drinks. Definitely a good time!

The next day we checked out of the hotel, returned to Parking Garage 10, endured the struggle with that “God forsaken” card reader at the entrance gate, and made our way to the 8th floor using elevator A. The GI Cancer Center at MDA is full . I’m not going to go into the details of our record setting wait and the perfect storm created by “Murphy’s Law”. But eventually we were placed in a room and my doctor comes in. After hugs all around and the usual pleasantries she tells us my scan looked good and that as far as she was concerned I could have my hip replaced but, (crap, she said the word “but”) there was this small area of slight “uptake” in the right hilar node area that puzzled her. For those that don’t know,  “uptake” is an area of increased absorption of the radioactive dye. I think of it like eating. Cancer cells “eat” more of the radioactive sugar and it lights up on the scan. There are lots of reasons that areas may “eat” more. Infection, healing, an small ileus in the liver to name a few. I have had them show up from time to time on scans and never say a word about them. They are my “unmentionables”. You know, nothing to worry about. I never say anything about them and they remain unknown to everyone but a select few as they are nothing to worry about at the moment. The reason she was puzzled by this particular spot was she said it was in my previously treated area. “Why is it there?” she wondered aloud. I ask her if I am still considered “clean” and she says yes, but (there is that word again - but) she wasn’t sure just how to follow this spot. When should we me scan again. Two months? Four? She tells me she wants to take it to the tumor board on the next Monday to talk it over with the team and she would let me know when I needed to come back. “Fair enough” I think. I am relieved that I am able to get my hurting hip replaced and that the next time I have to make the long trip to Houston it will be easier on me. We leave the cancer unit, endure the defective card reader at the exit of Parking Garage 10 and head North. By now it is 2:30 in the afternoon and we know it will be well after 11:00 PM when we roll into Wichita. I watch for the statue of Sam Houston and am thrilled to see him in the “rear view” on our trek home. I text the kids and call the family letting them know I am “essentially” clean. I read and reread the copy of my scan noting that there were several “unmentionables” in my results, as usual. The spot in the hilar node was barely “mention-able” really, so I dismissed it as a true unmentionable. We got home late and fell into bed. We both had work in a few short hours.

I didn’t dwell on my scan report or even give it a second thought. I focused on my hip replacement and all the things I needed to get done before then. My daughter’s baby shower was approaching and there were some things I wanted to be sure were ready for that. I needed to be sure things were ready for my mom to come after my hip replacement. Get meals planned and groceries bought. The weekend came and went and Monday brought the start of a busy week. On Tuesday morning at 8:00 AM just as I was about to take my first sip of joe my cell phone rang. I was surprised to see the University of Texas MDA flash in the caller ID. I said hello. When I heard the voice of my doctor on the other end I set my coffee cup down. “Why is she calling?” I think, my mind racing. She started by reminding me that the Tumor Board had met on Monday. I feel my pulse quicken. I know she isn’t calling to say “see you in two months”. I sit down at the kitchen counter. She goes on to explain to me that  after a full review of my case and my scan the board recommends doing a bronchoscopy and biopsy the area. She reminded me that we had come so far and we needed to be cautious. She asked when I could come back. I remind her of my impending hip replacement. The finer details of timing would have to be figured out. When would I be fit to travel? What about the blood thinners that my joint replacement required for 6 weeks after? (What about the fact that I hadn’t mentioned this stupid “unmentionable” spot to hardly anybody? Huh? What about that?!) I hear myself telling her I would get it all arranged on my side. I jot down a few details and thank her for calling me. We say goodbye. I feel like I can’t think. I feel like I can’t breathe. I have no idea where to start to tackle this dilemma. I take a sip of coffee. I call my husband. I post on social media that next to the word complicated in the dictionary is a picture of me. My daughter, with her sixth sense, calls me.

As you all know it was decided, after consulting with my orthopedic surgeon, that postponing my surgery was best and safest for me. I felt overwhelmed by all the things that needed “undone”. My mom bought plane tickets. I took time off of work, and I’m not the only one that did. I manage to undo my hip surgery plan pretty successfully. My mom got her plane tickets credited which relieved me. I lamented wasting money on nightgowns to my husband. I hate nightgowns. I prefer pajamas. But with the hip surgery I thought I could manage easier with them. Now I had them and didn’t need them. My husband just laughed when I complain about the wasted dough saying “You crack me up!”

Then I feel equally overwhelmed by all the things that need to be arranged for a return trip to Houston. Coordinating a consultation with my pulmonologist that did the last biopsy on this area, pre-anesthesia lab and work up, scheduling the procedure itself, then finally an appointment with my oncologist to get the results and making sure they all worked around my husbands and my schedules. After about a week, and a lot of phone calls, schedules were coordinated and dates locked in for May 24th - 29th.

This whole time I have never felt scared. I know God is with me and in charge. I definitely feel annoyed that my hip hurts and I have to wait to get it fixed. I won’t lie, I have felt a little niggle of concern. Who wouldn’t? Mostly though throughout the last few weeks I feel like I am a disappointment. I realize this spot is not my fault. This is beyond my control. I know this in my head but my heart feels otherwise. I feel this incredible urge to apologize to my family, my friends, and even my doctors. I know it seems twisted but  I’m sorry for the inconvenience, the expense, the worry this causes my loved ones and just the whole mess of it all. But mostly I’m sorry that it came to this: having to expose my “unmentionables”.

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Michele, I am so sorry for this very stressful situation. Dr. Eng is my doctor as well, and she is very cautious and is a great doctor , as you know. Hopefully, this will end up being nothing. But, you have to go thru the steps. Just take one day at a time which is easier said than done. I currently have two lung nodules which are still small but growing and Dr. Eng is monitoring me every two months with PET scans. I never stayed at the Courtyard. Is it the one by the Residence Inn? I loved your description of your visit to MDAnderson. My life to a T, even the long wait to see Dr. Eng. My longest wait has been 1 and 1/2 hours. So, I am also no sign of measurable disease BUT suspicious lung nodules. I really force myself to live for the moment. Praying for you and your family.

Michele, Kim like this comment
I think the Courtyard is by the Residence Inn. We also like Springhill Suites. Free breakfast and happy hour on the weekends with wine and beer.
So much to take in and I must say that you are stronger than I will ever be. I still have to Google the word niggle. The ups and downs seem so overwhelmingly. I hope that the hip can be done as soon as possible without anymore delays. Can you take anything for the pain in the hip for now, I hope so. Thanks for sharing Michele. It seems You have a great support system and you haven't and never should feel you are a disappointment..
Thomas likes this comment
I am taking Tramadol during the day for pain so I can work. It’s not perfect, but it does take the edge off. I am using Percocet at night and it is very helpful.
Kevin likes this comment
Wow, what a narrative. I wish you the best on your next trip, and that you're able to get back on schedule taking care of your hip surgery
Michele likes this comment
Wow, Michele, so much to deal with and so disappointing. I’m so sorry you’re going through this, but I hope and pray that you get answers at the end of May and you can reschedule that hip surgery soon. Thank you for keeping us informed, and I will continue to keep you in my thoughts and prayers.
Michele likes this comment
Oh Michele...I hate to see another worry. I will pray this is nothing harmful and that soon you can get your hip replacement surgery. As usual, your post was insightful and great to read. My best to you. Lisa
Michele likes this comment
All paws and fingers crossed for you, so that you can put your "unmentionables" back where they belong, and may they never see the light of day again. Hugs and more hugs :*)
3 people like this comment
I so admire your fearlessness. By you staying fearless, you are definitely helping to decrease the worry of those who love you. Kudos to you. As for the uptake near the hilar node, may it stay unmentionable and let you get back to planning hip recovery in your new nightie. Best wishes for an uneventful outcome in Houston.
Michele likes this comment
Michele, I am praying for you, as always. What a curve ball got thrown your way...as if a hip replacement wasn't a lot to deal with already. I've had a couple of those uptake scares, and I hope that this is just a false alarm for you as well. Hugs.
Michele likes this comment
Amazing how things happened. I am sorry.

You and your upcoming tests will be in my prayers.
Michele likes this comment
You definitely have a great way with words, I could almost picture the places in my mind! Sorry your op has been delayed, I can recommend oxycodone id the tramadol makes you nauseous ( like it does me 🙈) I take 20mg longtec. Slow release every 12 hours with liquid for break through pain.
Fingers crossed & praying that your scans are good news and your Op finally goes ahead soon.
Bigs hugs sent your way xx
Michele likes this comment
Hi Michelle, what a lot you have had going on. I really feel for you. Thank you for sharing all the info. Tough times. Fortunately, you are organised, resourceful, loved and supported. Bugger feeling guilty. Don't go there. You crack me up, too! I can identify with that nightie irritation; small and irrelevant in the great scheme of things, it would bug me too. You gotta laugh. Love n hugs. xxx
Michele likes this comment
So many prayers and positive energy rays coming your way to produce the best outcome. You are definitely a warrior that is not about to let this dang illness take away your fire, So sorry for the added stress having to postpone your hip surgery. As recently sent to me, "go forth with grace, respect and love". You are definitely doing that.
Michele likes this comment
Love you Michelle. You are in my prayers. God will always reveal in his time his plan and it’s always good. Amen. Hugs and love and always prayers Sabina
Michele likes this comment
So sorry there is another bump in your road. Praying the road smooths out soon and the need for painkillers becomes as thing of the past.
Michele likes this comment
Just as we get use to the light at the end of the tunnel someone switches it off. I think we almost feel guilty when things are going well. Curved balls are thrown to try and catch us out. The most important thing is to keep looking out and looking after yourself. Everyone else knows & understand you so you have no need to worry about them. In my thoughts as you travel the next part of the journey. Hugs Annabelle xx
Michele likes this comment
Annabelle you read my heart completely! Much love to you!!
Michele, I am so sorry to read that the proverbial monkey wrench has been thrown into your plans for that hip replacement. I know you must be terribly disappointed and feel like your body has let you down. I pray that that biopsy will come back clean so that your surgery plans can move forward. As my dearly departed med onc used to say, this is probably just a "freckle." I send prayers and good thoughts your way and all fingers and toes are crossed for a "freckle" and nothing more. Love and hugs to you.
Michele likes this comment
Thank you for your gentle words of encouragement. Sigh...I should be used to this never being “over”. I need to just be thankful for the time I have got and let the “freckles” fall where they may. Much love, Michele
Smurf likes this comment
Hello Michele, I am praying for you and hope that this turns out to be nothing and that you get your hip replacement and are rid of the pain it is causing. I really hate all the ups and downs of this cancer. You have been through so much but you have a great support system, that is something to be very thankful for. Keep us posted. Positive vibes coming your way!
Michele likes this comment
🙏🏻👍🏻😘
Michele likes this comment
I hope that it turns out to be nothing and that your doctor is just being cautious.
Michele likes this comment
It’s beyond our control. But humans are hopeful creatures, life thrives on it. So let me join the chain of hope for you. You are dear to my heart, to all of us.
Michele likes this comment
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October 3, 2011

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