Tuesday, April 2, 2013

A Treatment Plan Outline

We’ve done a little shimmying and a little shaking with the schedule of events but I’ve long ago released expectations of set timelines.

That's the mirror reflection of me on a PET Scan. The 
surgeon is going after that area of black in my right armpit. 
I feel so exposed! Heeeeyyyy, sexy la-day!
I thought I was going to have a lymph node biopsied from my neck this past Thursday, but now it’s coming out of my right armpit – tomorrow. I did see the oncology surgeon that day  – an adorable, friendly little man who has performed two of my previous lymph node biopsies, but he wants to go after some different nodes. After examining my latest CT and PET Scans from Columbia, he’s highly attracted by a cluster of nodes under my right armpit. He says they are especially FDG Avid (hot, hot, hot), are large and are easy to grab. He wants to get some really good tissue samples. He’s concerned with cutting into my neck since I do have such a big cluster of nodes there, but many are small and may not render good samples, and entering there could lead to nerve damage – which I’m already struggling with. He also doesn’t want to give me a neck scar. I understand. Let’s get the best specimen we can. *Note on PET Scan photo. A PET Scan shows all metabolic activity, so don't be alarmed at how much of my body shows up as dark spots, for example the brain, the heart, the liver, kidneys, bladder, etc. are all dark because they are functioning normally. The big blobs in my left neck and collarbone, mediastinum, underarms, throughout abdomen, and the smatterings on my hip bones and upper thighs, well, that's what we're trying to get rid of. Sorry if this is disturbing, but thought it might be interesting for people to see what we analyze. 

[Desperation visit]:
I was in so much pain last Wednesday, I hit delirium. I didn’t want to wait for a phone call back from my Columbia team. I wanted to see a doctor in person and knew that a trek into the city wouldn’t be happening. I went in for one of my always productive and calming visits to Dr. Dailey’s office. After discussing my pain syndrome for a while, he prescribed me Neurontin, a nerve medication, and ordered me an MRI of my thoracic spine to see if there was anything pressing on nerves. These were both things that had also been discussed by my Columbia team, so I knew they’d be on board. When they heard the plan, they were in agreement.

The Neurontin has been helping, especially to stop the pain at night. My Columbia team had me bump up to 20mg steroids in hopes of a boost to be able to enjoy the holiday weekend. Even so, Saturday was shit. I was in incredible pain, spiking fevers short of breath and very weak. By all intents and purposes, I probably should have gone to the ER, but didn’t want to land in the hospital when I knew I was going to Columbia on Monday to see the people that I needed to see and get this all squared away. Instead, Craig and I bowed out of the family Passover gathering, and he took care of me all day, at one point able to get me outside onto the deck furniture he brought out to read and fall asleep in the sun. With time and good TLC, things got better.

My brother and sister-in-law and the kids slept over so that meant that the Easter Bunny came to visit our house for the first time! We helped them create an Easter egg hunt and hide their baskets. In the morning, our nephew, Jake, 3, came running into our room at 6 a.m. (to our delight, really, it was so cute!) to tell us that the Easter Bunny came. He and his sister, Anna, who is almost 2, were so thrilled to find colored eggs on shelves, in plants and under tables. I don't think about pain when they're around because they're too cute to be anywhere in its realm. 

I enjoyed breakfast with everyone, took my meds and went back to bed for a bit before heading to Craig’s grandmother’s for an Easter visit and then Easter late-lunch with my family. We spent the afternoon at my parents with my sister and uncles and aunt and their puppy, Brodie. There, I could be comfortable wrapped up in a blanket when chills set in and leaning on a heating pad when pain set in and all was fine. It was comforting to be there enjoying tradition and normalcy, besides the coughing spasms every time I laughed, which was a lot.

Suddenly it was crash and burn time and we headed back home. I had a solid gagging, coughing fit in the car that caused me to puke into my hands, onto my trench coat, into my purse, and the Jeep rug mat. One bite of decadent Pastiera too many, I guess.

[Come to Jesus visit]:

Monday Craig took the day to drive me into the city, as I knew my body couldn’t handle the train and he wanted to be there to go over the important information we’d be talking about.

We went over the results of the MRI with Dr. O. The test looks closely at bone and soft tissue, showing things that don’t necessarily pop up on CT or PET Scans. Not surprisingly, I have “extensive osseous metastatic disease,” meaning there are lots of soft tissue nodules (cancerous areas) infiltrating my spine, mostly on the left side, hence all of my pain and numbness, as they are doing all kinds of things to the nerve branches coming out of the vertebrae. Good news is that there are no compression fractures or abnormalities in the cord itself.

Dr. O spent an extensive amount of time with us explaining my scenario, going over options and talking way into the future, noting that if we only plan for the immediate step, we’re only going to be left spinning our wheels. I concur. He infused me with a lot of hope when I was expecting a very dire report. Here’s the current “plan:”

1.     Get Karin feeling better and out of pain, as this is a quality-of-life issue. We will work to shrink down the disease in my bones and stop the pain. We’ll do this with a “short pulse” of induction therapy with traditional chemo drugs. We’ll do this just long enough until I can get a fairly clean scan. Radiation may be involved in this as well. The actual treatment will be decided once we get the biopsy results next week and know for certain what kind of lymphoma we’re working with.
2.     Move onto a clinical trial (many options) that will maintain the near-remission and keep me stable for hopefully a long time.
3.     While 1 and 2 are happening, explore future, future options. We’ll start searching the Be The Match Registry to see if there are any unrelated, matched donors out there that I might be able to get a second transplant from. We’ll also look into some promising vaccine therapies taking place in Texas.

Tomorrow I go under the knife. The surgeon says he’ll give me the Michael Jackson Propofol special, so I shouldn’t feel a thing. I was reading my blog post from my last lymph node biopsy in 2010. Apparently, the day after, I went for a 40-minute walk, baked kale chips and zucchini bread. I don’t foresee that happening this time. I’ve already recruited my bestie to come over and take care of and watch movies with me – maybe we can do a 10-minute walk around the neighborhood.


  1. Just wanted to say I think about you all the time and say a prayer for you every night. Love you and wish you the best through everything.
    Jen Godburn

  2. You amaze me. Seriously, if more people had your attitude the world would be such a beautiful place. Always praying and thinking of you.

  3. Karin, you don't know me from Adam, but for what it's worth, you inspire me every day to deal with the bumps in the road and drive on, with a smile on my face to boot! When things get tough I think of how I imagine you might decide to face it (after all, it's a decision, right :-), and I try to be that person for myself. You're in my thoughts daily and I'll send some of my "Karin-acquired" good vibes back your way! Emma xx

  4. Hoping for a swift recovery form the biopsy. Your post is heartwarming but sad. I wish you could always be as 'pain-free' as you are when the children are around. I wish we could bottle their 'energy' and give it to you for all those times when you need it most.

  5. Karin- sending you all my love!!

  6. Thinking of you today as you have your surgery. I hope you can feel better soon and heal quickly from this procedure. Take the day for yourself and being with your friend and enjoy her company as best as you can. Watch a great movie. There are so many new ones out in dvd already. Prayers for you from me.

  7. Wow I really like this Dr. O!!! You sound like you are in such great hands with him. Best to you for a non eventful surgery and an easy recovery. Sounds like the plan to get you pain free can happen very soon. Keep that feather nearby for strength from your Gramma. "Love From Karin" - that was one of my favorite posts - I'm certain she is watching over you from above. Much love and prayers....

    1. You are surrounded by great Doctors and a loving husband and family. So many people out in cyber land near and far are praying, sending positive healing energy your way Karin. There seems to more options out there too. I believe in the power of the collective community- I know you are experiencing great pain and I am not so sure I could endure. I wish you did not have to go through this. I pray they get you in remission so you can enjoy the warm days of summer. Go to the beach and visit our Alpaca farm! Heading to Springfield Ma to the Bug E Fairgrounds for the North American Alpaca Show. Located in the Mallory Building. April 5-6-7. There will be about 800 alpaca from all over there this weekend. All of the alpaca surround you in the warmth of their soft fiber- Sammy too!

  8. You are the star example of an empowered and educated patient. Every time I read your posts I think that damn disease isn't going to get the best of her! It's put up a good fight, but Karin will prevail.
    P.S. Neurontin is good for controlling hot flashes, too. Just an added bonus!

  9. Karin, holding you in my thoughts, sending positive energy for healing and ease of being


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  11. You happen to be this celeb illustration associated with an motivated as well as intelligent individual. Whenever We go through your current articles I believe that darn disease is just not proceeding to get the finest regarding the woman's! It's set up a good combat, yet Karin will probably win.
    G. Ohydrates. Neurontin is useful for preventing very hot sensations, too. Simply another advantage.

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