Sunday, September 13, 2009

Overwhelmed

Kristine has been in a lot of pain the last couple of weeks stemming primarily from the muscles in her upper back. On the right side, her muscles frequently launch into spasm lasting anywhere from one to ten minutes. It isn't clear exactly what's causing the spasms, but they are likely the result of either overcompensation for her paralyzed left side or interference of the muscles by tumor masses in her lymph nodes. On her left side, the muscles in her back that hold the shoulder blade in place have started to weaken due to inactivity. Kristine was kept away from physical therapy for several weeks while she received radiation to lymph node tumors in her right shoulder and neck. With no strength in the musculature to hold them in place, her left arm and shoulder have rolled forward pulling on the back muscles and inducing extreme discomfort. Kristine tried taking a muscle relaxer to relieve the pain. The trouble was, while it ameliorated the spasms on her right side, the medication did little to relieve the tension on the left. More concerning was that the prescribed pharma interfered with Kristine's breathing, leaving her already compromised lungs gasping for air. The situation has left Kristine in a Catch 22 -- the pain makes it difficult for Kristine to work on strengthening the muscles, but only strengthening can resolve the pain.


Several doctors' appointments are on the agenda for this week and Kristine's mom will be on hand in Philadelphia to help. Kristine is scheduled to see our primary care physician to get some options to manage her muscle pain. She will also get his recommendation for a good physiatrist since ours has turned out to be somewhat of a deadbeat -- not returning a single request for call back.

Also this week, Kristine will get her regular check up scans. She will have CT scans taken of her chest, shoulder and neck and an MRI of her brain to evaluate and measure the progress of her disease. The anticipation leading up to and the frustration that often follows the scan results is emotionally taxing. The reports rarely bring positive news and are never accompanied by solutions to fix the underlying problem. Our expectations for this round of scans are low though as we see clear signs of disease progression. The first is a serious of tumors on the surface of Kristine's head within the perimeter of her hairline. Although only two have reached a large size -- about that of a grape -- several more have continued to enlarge and still others have developed anew. Another visible sign that has reared its ugly head in just the last week is a small lump that has formed at the lower crease below Kristine's left breast. The signs are especially troubling as they represent what is likely just the tip of the proverbial iceberg, leaving us anxiously wondering what might lie beneath the surface.

We have both conceded that the herbs Kristine has been taking over the last several months are not working to reverse the progress of her disease. She is still taking the supplements and herbs until we move on to our next option in the case that they are having a slowing effect on the advancement of her cancer. We both remember the condition she was in prior to beginning the herbal treatment and hate to have her fall back into that state. There is another natural option that Kristine will begin taking after her scans are complete. It has the most evidence from conventional research of anticancer success than anything else we have tried to date. I'll talk more about that in later posts once we've had a chance to evaluate its impact.

Overall Kristine is feeling frustrated, dejected and overwhelmed by her situation. She feels like the progress she has made physically to improve her mobility over the last several months is quickly being reversed. Mostly she is just exhausted from being in pain. Her emotional breakdowns come more frequently these days. Kristine tries to compose herself during the day with her friends and helpers until she can release her emotions with me at the end of the day, but even this has become difficult.

We are still holding on to hope even if it is by a string. Hope that an answer, a solution, is around the corner.

16 comments:

  1. thank you ryan, for this post. i continue to be amazed and inspired by kristine's determination, courage and strenth. even in these tough times. i am so glad to be able to see her occasionaly, and as all of her friends can imagine, we still have a lot of laughs and smiles, even though she is struggling with the pain. a bad day with kristine beats a great day with just about anyone else!!! we love you and continue to pray for you both.

    love, jeanna

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  2. Kristine and Ryan,

    Thank you for the update. I will be praying that this week will provide some positive news and some solid direction. I as well as everyone that loves you am so sorry that you are in so much pain. I sure wish it could be cured with a bottle of wine and some good laughs, but obviously reality will not allow it. Please hold on to the positive things in life that have gotten you this far!

    With great love and respect for the battle that you so tirelessly fight! Ann Riffel

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  3. Kristine and Ryan,
    Our prayers continue to be for you, especially with this week's round of appointments and tests. I am so sorry you are living with the pain and discomfort, Kristine. Hoping your doctor can relieve it for you. Enjoy your time with your mom, I'm sure she'll brighten your spirits!

    Lots of love from Missi and family

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  4. P.S. I love the new photos of you all!:)
    Missi

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  5. After looking at the great birthday photos, I was really hopeful that this post would be filled with good news. I have tears in my eyes, wishing there was something we could do to ease the pain & make the 'c' go away. Ryan, thanks for keeping us updated & also for taking such good care of our special friend. Kristine, may God give you healing, strength & courage. Much love & extra prayers from Jill

    Love, Jill

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  6. I was so happy to see the bday pictures and am still hopeful .. I check it everyday and someone how missed the 13th posting until today
    I am so sorry for the pain and suffering that you are going through I really wish I could do something
    I think of you and ryan and all you are going through everyday .. please continue to do what feels right and have hope for the best
    lot's of love barbara

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  7. Kristine and Ryan,

    Thank you so much for the new posting today. Although, it makes me sad to hear of Kristine's agonizing pain and discomfort, it soothes my mind and conscience knowing that she's going to the doctor this week and also getting the MRI tests.

    My thoughts and prayers are with you every day and I'm glad to hear Kristine's Mom is in Philadelphia.

    Not sure if Kristine is up for guests, but I would love to see all of you.

    Love,
    Kathy

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  8. Oh man, I know you are so frustrated and discouraged, Kristine. It is just a series of hard things to confront. Please hold on to that phenomenal spirit we all know you have and stay positive, as best you can. I am curious to see what this other natural approach you have up your sleeve. I love you very much and really do pray for you, often.
    Lots and lots of love, Leigh

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  9. My thoughts and hugs are being sent your way.

    Love,
    Cousin Rach Becker
    Kalamazoo, Michigan

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  10. I have found for me using a TENS unit both stimulated muscle growth and released muscle tension. Since it isn't a medicine, it wouldn't interfere with any other drugs and shouldnt have any adverse effects. What about accupuncture?
    If your careplan won't include TENS, I would be happy to send you mine.
    Wendy Antell wantell@hotmail.com

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  11. We love you: Be strong!
    Neil and Mark

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  12. Kristine and Ryan, Thanks for keeping us updated, we are thinking of you both often and keeping you in our prayers. Glad your mom is coming for more emotional support.
    Brian and Betsy

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  13. Sending big, Big, BIG love to you from afar. I hope some relief from the pain is just around the corner...will be praying for best possible solution.
    Much love,
    Kira

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  14. Hi Kristine and Ryan,

    Thinking af you everyday Kristine and wishing you pain free days. I have always envied your spirit and love for life! Enjoy this week with your mom as much as you can-- hoping and praying for good scans...
    Love,
    Angie Meloche and family

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  15. Hoping the last scan results turned out well. Praying for your comfort and peace. I am checking the blog almost every day waiting for word about you, Kristine, hey maybe no news is good new?????

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