Day + 4158: No, Oz never did give nothing to the Tin Man…

“…That he didn’t, didn’t already have
And Cause never was the reason for the evening
Or the tropic of Sir Galahad

So please believe in me…”

So in the end, what Karen and Dr. Levin decided on was a one time shot at guided needle biopsy of one of the masses in her pelvic and groin regions to try and determine their nature. One has to know what one treating for there be a shot for it to help.

The objective goals are to try and alleviate some of the pain, reduce the risk of spontaneous fractures, preserve mobility. Cure was not a discussion item, so brace yourself.

Karen had a rough morning and opted to lie down in the backseat for the ride in. The orthopedic oncology consult at the Hopkins Outpatient ran as scheduled. Electronic checkin, “new” patient medical history forms, Amy, the nurse, took vitals BP 101 / 49 (Sucky in technical terms.) Next X-ray. Amy, the PA, did the preliminary work-up and had a good discussion with Karen about her expectations. A cot in the exam room allowed Karen to lie down, best for controlling the pain.

After some time Dr. Levin came in and the diagnostic progress swung into full speed. He had reviewed her history and scans. How long have you had the pain? Does it radiate down the leg? Is it worse when you transition from sitting to standing? Was the pain immediate during the bone-marrow biopsy or two to three days later? Is the pain localized to the biopsy site. What alleviates it. Exam of the site. Predominantly left side? Does the hurt here? – YES! Lift your leg. Move your toes, etc. He left the room stating he was going to check with radiology.

He returned with a bone model of the pelvis and a femur and started to explain to Karen the reasons behind his questions. Karen has weakness or erosion of the pelvis around the left hip joint. The top left femur is also damaged. Near the Sacrum, a soft mass appears to be pressing on her sciatic nerve. She has a pelvic fracture, the exact location I missed as he had the model turned for Karen to see. Near the pubis area is another mass. A third mass seem to be on the exterior region near the femur.

Dr. Levin stated that hip replacement would be the normal surgical approach to treat the deterioration of the left pelvis and femur area. Not an option for Karen. He also explained the insertion of three screws into to the femur was also not viable, again based on the state of her disease and blood counts. He would have liked to do an open surgical biopsy to ensure a viable sample; however, that procedure is also too invasive. So, he recommended the guided needle biopsy. Karen’s response was why?

It is worth reiterating that chemo treatments are almost as diverse as cancers. To have a viable treatment they have to know what they are dealing with.

“…The odds of being struck by lightning in a single year 1 in 1,222,000…”
“…The odds of being struck by lightning over one’s lifetime 1 in 15,300…”

The causality discussion was interspersed in their conversation, and Dr. Levin did not discount these masses and legions stemming from a different type of cancer. Although highly unlikely – those are damning words to a girl who has been a medical outlier. He stated that in a sense, Karen had been hit by lightning twice already. Although the squamous cell carcinoma was not known to present itself like these lesions and masses; however, the ties to her MDS are much more probable. Dr. Levin stated that one of the possible treatments could be radiation. However, he needed more data and confer with the interdisciplinary team now treating her.

Karen had candid questions what the value or benefit from any treatment or procedure could be (there are never absolutes with one exception.) Quality of life is fundamental to her being. Buying more miserable time? It is her life.

Waiting on the call from radiology to schedule the biopsy.

Regular treatment day tomorrow.

Michael

7 Comments:

  1. Tin Man-America

    I still looked it up, but feel justified in posting about it because I know some of the lyrics. 😊

    I hope they find a solution to help you. You have always been a positive force in my life. I wish we lived closer so I could give you a soft hug. I know hugs hurt when you have sciatica. I have it on my right leg. It is very painful as you well know.

    Praying for comfort and healing.

    Hugs & Love,
    🤗& ❤️

    Cathy

  2. Sending you lots of love, Linda

  3. America. One of my favs!
    Love you guys. Don’t know what to say.
    Positive thoughts and healing prayers.

  4. Love, hugs and prayers for healing.

  5. Bless your hearts. Sending love.

  6. A lot to take in and a grueling day! I hope your regular treatment day tomorrow goes smoothly.
    Sending love!

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