Saturday, November 28, 2009

Restless Nights

It is Sunday in the early evening. I am writing this post by Kristine's bedside. For the last couple of hours she has been in a cycle of sleeping and waking states. When she's sleeping she's restless. Her arm and hand move about as if she were trying to grab hold of a cup or pet an animal. She blurts out full sentences, dialog from the scene of a dream she is having with a character in her subconscious. When awake she's partly aware and partly confused, generally unsure of her surroundings. She has asked me several times (not remembering that she asked me just twenty minutes earlier) when we got home, even though we haven't left the house all day.


The likely reason for Kristine's condition is a negative reaction to a new pain medication she was prescribed and has been taking for a couple of days. However, the confusion is none-the-less concerning. Kristine has a very small tumor in her brain, for which a sign of possible complication is confusion. Further, her last dose of the medication was yesterday morning, so the effect from the drug should have already run its course. To be extra cautious I paged the oncologist on-call. He felt that the symptoms were not of immediate concern and that Kristine should be evaluated in the morning to be sure that she regains full mental capacity. We'll see how she is mentally in the tomorrow.

Unfortunately, another issue surfaced tonight that may also require attention in the morning (it's no surprise since these things seem to come in pairs). While I was massaging Kristine's neck to calm her down, I noticed that her pulse was not beating in a fluid rhythm. Her heart beat had reverted back to an abnormal pattern due to her cardiac arrhythmia, which is normally managed through medication. If this condition does not correct itself by morning we will have to see our cardiologist first thing tomorrow and likely have to spend the day in the hospital to get another cardioversion procedure done. Regardless of what the morning brings it looks like we maybe in for another long, sleepless night. We'll need some closure before we can breath any easier.


I should back up a little and provide an update on how Kristine has been progressing over the last couple of weeks. We saw our oncologist two weeks ago. We had a few objectives for our visit. First, Kristine has been having an increasingly hard time breathing recently, especially when she exerts herself. The doctor confirmed our concern. On the examination table Kristine's oxygen level was 95%. When she got up and walked just a few steps her pulse oximeter reading dropped to 88%, indicating that she was not getting enough oxygen through her limited lung capacity. Our Oncologist quickly called in an order for oxygen, which was delivered to our house that night. Our second objective was to discuss a clinic trial for a less toxic drug option being conducted out of our cancer center. Unfortunately, Kristine's advanced condition disqualifies her for the study. Finally, we wanted to discuss pain medication. At the time of our visit, Kristine was having stabbing pains in her back caused by tumor growth pressing against a muscle or nerve. He prescribed a long lasting pain med, however, it was this medication that led us to the situation I described above.

We received the results back from Kristine's brain MRI. Our Neurosurgeon was not concerned and did not feel that any immediate action was necessary -- the tumor has progressed very little from the previous scan.

Kristine continues to push on, but the battle is taking its toll on her mentally and physically. The pain in her back has subsided, but has been replaced by pain and discomfort in her right shoulder where several tumors have enlarged and hardened the area. The tightness this has created has made it difficult for her to use her one good arm. Additionally, in the last few days, both of Kristine's arms and hands have swollen to one and a half times their normal size. This is due to a build up of fluid in the lymphatic system known as lymphedema. The lymphatic system is unable to expel fluid from the limbs due to either a blockage of the pathways or a breach of the nodes themselves from tumor growth. The condition does not seem to be painful but is fairly uncomfortable and unnerving. We have an appointment on Tuesday with the Cyberknife radiologist to discuss potential treatment of the area. It is our hope that Kristine can see some relief from this procedure and regain a broader range of motion in her right arm. Without some form of relief Kristine will continue to struggle even more than she already does with daily tasks.

23 comments:

  1. Hi Kristine and Ryan,

    I hope the doctor appt. went well today and Kristine is in a little less pain and more confortable. Ryan, thank you again for keeping us all up-to-date on our girl's prognisis. You are an angel on earth, that's for certain.

    Take care. Hugs and kisses coming your way.

    Kathy and Ruby xo

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  2. Sending love and prayers from afar. Each and every day.
    Wishing for some peace of mind and restful nights ahead.
    Much love,
    Kira

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  3. Thanks for the update Ryan. Even though we don't see you guys...ever, we're always thinking of both you and Kristine.

    Brian

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  4. Thanks for the update..... I hope the side-effects subside from the pain meds. And as always, Krissy, I am seriously praying regularly for a BIG miracle for you. Love you tons.
    Leigh

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  5. Thinking of you both and hoping for better news.
    Liz & Bill

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  6. Prayers for peace and hugs to you both,
    Missi

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  7. thinking and praying for you....love seeing your beautiful smile in your pictures. My boys still talk about the visit to your sister's house and my friend kristine. we've had a lot of bed-time 'life stories' with you in them. especially our dc trip. it always makes them laugh.
    love you, debbie h.

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  8. praying for a christmas miracle from down the street! we think of you both all the time.

    love, jeanna, rusty and christopher XOXO

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  9. Oh .. I so hope this is due to the pain drugs
    That sounds like how mom was in the nursing home and it was totally drug induced!!
    My thoughts are with both of you ..
    Lots of LOVE from San Diego - Barbara, Josh and Joan

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  10. Love and prayers from Michigan.

    Cousin Rach Becker

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  11. Hope the doctors visit went well and that you have had some better news. Praying for you to be in less pain and to have some comfort and peace.

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  12. Thinking of you lots. Sending lots of good thoughts from the Shore.
    Much love,
    Kira

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  13. Ryan and Kristine, Please do me a favor wear my moms ring that I gave Kristine, the one that is her birthstone. K! Love and prayers Mom

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  14. Wishing you guys all the support and strength we can send. We are always thinking of you and stay strong. Mark & Angela Karp

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  15. Thinking of you both. Sending our love and hugs. Dick and Jane

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  16. I was researching Leiomyosarcoma and came across your blog and I am deeply sorry for what you and your family are going through right now. We were in the same situation this past year. My mom, who is 43 years old, has a significant tumor (16x12cm) at it's largest state and multiple mets on her liver (largest was 6x7cm). She tried numerous chemo-therapy treatments all with side-effects that weren't pleasant and nothing seemed to work. She thought her odds were terrible and didn't even know if she should continue to fight. Luckily she decided to try ET743 (yondelis), a phase II and now phase III study drug. Of course the odds were terrible (I think less than 15% chance of her having a positive response to it) but her tumors have significantly shrunk on this drug! (now 11x9cm and 3.5x3cm). The decision process is the most stressful and many tears will be shed in light of giving up hope, but I wish you and your family the best and hope that Kristine finds the cure she is looking for! It has been 7 months now and my mom has gone from needing a wheelchair to walking with a cane. Miracles do happen and I hope they happen for Kristine!! We are sending our prayers your way :)

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  17. God Bless you Kristine and may peace and comfort find you soon.

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  18. Sending love, prayers and good thoughts your way.
    I hope there have been some periods of relief since the last post.
    Much love,
    Kira

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  19. Sending all my love and prayers to you Kristine...Wishing you some peace and comfort.
    xo Debbie (philly mag)

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  20. Greetings from Dexter. Just a note to say hello and let you know we are thinking about you.
    Love, Jill, JD, Lauren & Andrew

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  21. Always praying and wishing for the best for you.
    Hope the pains will subside.

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  22. Thinking of you and hoping you are comfortable, Kristine. Anxiously awaiting an update

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  23. Thanks for the update. You continue to be in my daily thoughts and prayers. Let me know if you need anything. Rachel

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