A Slow Decline

Posted: May 14th, 2013 under health, nursing, philosophy, psychology.
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Brent has done a wonderful and thorough job recounting my health problems this past year through his blog. However, I wanted to share my experience from my own perspective, so here it is.

In early June of last year my endocrinologist diagnosed me with diabetes insipidus, in which the body doesn’t hold onto water as it should. Later that month I saw my primary care doctor for a gash on my shin that wasn’t healing.Zebra After taking my blood sugar, doing some lab tests, and consulting with my endocrinologist, I was diagnosed with type 1 diabetes. I went through the entire gamete of keeping close track of what I ate, counting my carbs, recognizing the symptoms of hyper- and hypoglycemia, checking by glucose levels, and giving myself insulin shots.

This was not the end of it. I was experiencing an onslaught of symptoms: problems with cognitive function (thought process/memory/concentration), lethargy, fatigue, muscle weakness and atrophy, abdominal fat accumulation, mood swings, anxiety, dizziness, loss of balance and coordination, easy bruising, slow healing wounds, weight loss, and increased blood pressure. Finally a state of severe confusion and disorientation in mid-August prompted my doctor to call an ambulance to take me to the emergency room. Apparently my ACTH (adrenocorticotropic hormone) levels were excessively high, causing high levels of cortisol, a stress hormone. This resulted in a diagnosis of severe cushing’s syndrome.

Four days after I was admitted to the hospital I experienced a fall onto the floor in the middle of the night. My neurologist believed the fall was due to low potassium (which was as low as 2.4 mEq/L in June) and high blood pressure. He suspected a seizure and immediately started me on Keppra, an anti-seizure medication, just in case it happened again. No one could ever find any evidence, nor did they have any reason to believe I actually had a seizure. I was in a dark hospital room with trip hazards including various cords and an IV pole. I was “confused,” and wasn’t being monitored. Yes, of course I fell down.

The neck fracture I sustained crushed my C5 vertebra, knocked it out of alignment, and chipped off a bone fragment. Dr. Florman, my neurosurgeon, removed the C5 vertebra, added a spacer from a cadaver, and screwed in a titanium plate to fuse together the C4 and C6 vertebrae. After the surgery, fluid built up in my lungs, and I had to be put on a ventilator. The experience of facing death was incredibly frightening and surreal at the same time.

Just to add to the list of medical maladies, I was diagnosed with extreme osteoporosis. This explains why I had been losing so much weight, and have been so weak and having so much bone and muscle pain. My endocrinologist, Dr. Rockwell, ordered bone density tests which showed my z-score to be -3.8 standard deviations (another way of saying “off the chart low”), and my L4 lumbar vertebra was -4.3. She started me on estrogen and Fosamax (which is supposed to keep old bone from being broken down by osteoclasts and thus preventing risk of fracture). I soon replaced the Fosamax with a daily injection of Forteo, a bone building medication which stimulates osteoblasts to regenerate new bone, thus increasing bone density and bone strength. My oncologist noted from a PET scan that I have a lot of compression fractures in my spine. Most noticeably one at T-12, and most recently T-8. Dr. Keller from osteopathic manipulative medicine came in during my most recent hospital stay (2 weeks ago) and “manipulated” my spine and muscles/bone around it. It felt wonderful, and I can see the benefits to engaging in this therapy regularly.

Jenna pushes me in the wheelchair outside New England Rehab.

Jenna pushes me in the wheelchair outside New England Rehab.

Dr. Rockwell, said that at one point I had the highest cortisol levels she’d ever seen at 9,000 mcg/dL (normal being 5-23 in AM and 3-16 in PM). She then said “You are about as metabolically deranged as they come.” A few days later my primary care physician, Dr. Mahoney, told me I was “the sickest, most complicated patient” she’s ever seen. I found this all a little disturbing.

After some tests and scans I learned that I have cancerous lesions on my liver. However, they did not appear to be the source of ACTH production. My doctors determined that the only way to quickly reverse the dangerously high levels of cortisol was to remove my adrenal glands. So at the end of August I endured a bilateral adrenalectomy. Since then they have discovered cancer in my iliac bone and in the lymph nodes in my neck. I had the lymph nodes surgically removed. However, surgery on the iliac and liver is not an option because my body is too weak to sustain major high-risk surgery and because I could have cancer in any number of places which has not yet been identified. I spent four weeks in the hospital and another two weeks in the New England Rehabilitation Center.

The oncologists up here are not very familiar with neuroendocrine cancer, which is what I have. It is in the class of neuroendocrine tumor (NET) cancers because it secretes hormones (ACTH in my case). At PopTech this year Brent had the opportunity to meet and speak with Dr. David Agus, who was Steve Jobs’ doctor. He said that my cancer and situation made me a very rare case. He referred to me as a “zebra,” which is considered the mascot for the NET cancer community. He said Maine hospitals have no experience with zebras, and strongly advised us to go to Boston. We got a referral to see Dr. Matthew H. Kulke, who is the Director of the Program in Neuroendocrine and Carcinoid Tumors at Dana-Farber Cancer Institute and an Associate Professor of Medicine at Harvard Medical School. Dr. Kulke is an expert in NET (Neuro-Endocrine Tumor) cancers. He only sees zebras.

My particular case is especially puzzling even to the experts at Dana-Farber. They believe I have the only known case of metastatic cancer of the pituitary gland. Dr. Kulke said that the ACTH-secreting tumors are very likely to have metastasized from my pituitary tumor which I had treated with multiple surgeries and radiation several years ago. It was thought to be benign, as they typically are. I told Brent that I should no longer be referred to as a zebra, but instead an okapi.

Dr. Kulke examining me at Dana-Farber Cancer Institute *photo courtesy of Brent Danley

Dr. Kulke examining me at Dana-Farber Cancer Institute
*photo courtesy of Brent Danley

My mom brought the girls up regularly to see me while I was in the hospital. It was always great to see them!

My mom brought the girls up regularly to see me while I was in the hospital. It was always great to see them!

The girls absolutely love Kate. I am not surprised. :-)

The girls absolutely love Kate. I am not surprised. :-)

My only option at this point was chemotherapy. I started the Temodar Dr. Kulke prescribed in early February, which is a pill form that I take for five days of a 28-day cycle. The side effects are not as severe as traditional chemotherapy, although the first night or two of each round I’d be nauseous and vomiting constantly for several hours. The pain management recommended by Dr. Kulke has greatly improved my days. However, the dosage was evidently too toxic for me because it brought my platelet count down dangerously low, and then brought down my red blood cell count as well. Once my blood levels were back up to a normal range, Dr. Kulke put me on a lower dosage which seemed to have no toxic effects, and also appeared to have shrunk my tumors according to the PET-CT scan I had done.

Temodar, my chemotherapy medication

Temodar, my chemotherapy medication

After starting the third round of Temodar, I experienced serious hypertensive crisis episodes. I was talking to Brent on the phone about three weeks ago, and feeling perfectly fine; then suddenly I felt an intense rush of pain and pressure in my head which quickly moved to my abdomen and chest. I was sweating, nauseous, and dizzy; I felt my heart pounding; and I was extremely anxious. I suddenly couldn’t talk, and started panicking. This worried Brent, and he called an ambulance to take me to the ER. I felt like I was going to die. Shortly after, I heard a banging on Brent’s office door, then men yelling. Brent later told me that Skye didn’t even know I’d left, and Hayley told him that a man in a black shirt and black pants with a flag on his shirt came and took me away. It had to have been scary for her! My blood pressure in the ambulance was 220/120. I was given IV meds for pain and to reduce my blood pressure, and I was taken for an MRI and X-Ray. Nothing out of the ordinary was seen on the scans, and I continued to have several more of these hypertensive crises during the week I was in the hospital.

Several of my doctors have suspected that the hypertensive crises are due to effects of Temodar (my chemotherapy medication) in which catecholamines are being released from the shrinkage of tumors. Catecholamines are hormones released into blood during times of physical or emotional stress. The physicians also suggested a pheochromocytoma and carcinoid syndrome, both of which were ruled out, as they showed up negative after several tests. Whatever the cause, I have added both daily and emergency blood pressure medications to my lengthy medication regime. I certainly like puzzles and a good mystery; however I don’t like to be one.

Brent spent many hours watching over me and keeping me company while working on his laptop in the hospital & rehab center.

Brent spent many hours watching over me and keeping me company while working on his laptop in the hospital & rehab center.

I had a day pass to leave New England Rehab hospital for a few hours. We went to Macworth Island. I did some walking while holding onto Brent's hand, and he pushed me in my wheelchair when I got tired. It was a great outing!

I had a day pass to leave New England Rehab hospital for a few hours. We went to Macworth Island. I did some walking while holding onto Brent’s hand, and he pushed me in my wheelchair when I got tired. It was a great outing!

I appreciated the many visits I received from friends, and regret that I was not always in a good state to socialize while I was in the hospital. While I was having so many cognitive problems related to my illness and medications, it was difficult to communicate or understand what was going on around me, or even recognize who was in the room. Sometimes I would go from being somewhat talkative and upbeat to spiraling down to a state of disorientation, incoherence, panic, or exhaustion. I realize it may have made some people uncomfortable and even scared.

The girls have all been very strong and so willing and eager to offer their help and companionship. I know they each worry about me and about Brent, especially when I am having an especially rough time with my pain. I hate for them to watch as my health declines, and know that I may not live for very much longer. They have been resilient and positive, although I know it is difficult for them as they have each individually expressed to me their worries, concerns, and feelings. It breaks my heart to see them worried and sad. It also saddens me to think I might not be here for them and see them through the many changes they will go through as they grow up. They have mentioned their desire to spend more time with me, and I absolutely look forward to and enjoy the all moments we have together. I love them each so very much!

Brent is my rock, and has been amazingly strong and supportive throughout this entire ordeal. He has sacrificed so much. He is working hard and trying to manage our finances to make up for my lost income and medical insurance, and paying for increasing medical bills. He’s missing out on the things and activities he enjoys, like flying, snowboarding and photography. He thinks and worries about me every day, constantly. I try to imagine his fear and anguish when I nearly died after surgery in August. Although I am no longer in hospital critical care, it is very hard on him to see me in intense pain on “bad” days and declining health. I can no longer do and will never be able to do many of the things we enjoyed doing or planned on doing together. One day I will be gone, but Brent must continue on, and thinking about the future. Not knowing how soon I will die, or how sick I will be between now and then makes it very difficult to make any plans.

Brent on the Downeaster to Boston

Brent on the Downeaster to Boston

Brent and me on the Downeaster to Boston

Brent and me on the Downeaster to Boston

I feel that I have been doing significantly better the past few weeks. My doctors’ recommendations for pain and symptom management have made a huge improvement in the way I feel. Brent and I have taken many trips down to Dana-Farber in Boston, and have many more to come. I am feeling more positive and hopeful. Mostly I want to live well, without being a burden or worry to my family.

This was our summer, autumn, and winter of discontent. Spring is supposed to be a time of new life and regrowth. We will wait and see.



17 Comments »

  1. Kirsten,
    Thank you for writing this blog. I appreciate the factual, yet also moving way you tell your story. My heart aches for you and your family. You are someone I admire greatly. You provide such a wonderful role model for your daughters. Perhaps some marvelous medical procedure will take place to improve your physical health, and perhaps not, but please know that you are an inspiration to me. Take care, Sue

    Comment by Sue Amero — May 14, 2013 @ 10:56 am

  2. Kirsten, I have been following your health issues on Facebook. I’m grateful I can follow you and your sisters this way. Divorce is unpleasant in its own right, but losing track of an ex-spouse’s family is tragic. So I’m glad you and Brent have kept those of us who don’t see you, informed of your issues, your family, your health. I am amazed at the woman you are, the courage you have, the perspective on life and death, your sweet girls who look so much like you, and your love for Brent. Those of us who believe in God, ask Him for peace and understanding for you and your family. You also have my admiration, thoughts and well wishes for each of you. May love surround you always.
    Jayne

    Comment by Jayne Leigh — May 14, 2013 @ 12:57 pm

  3. Thank you for all the information you have written. It could have not been easy. I am greatful that I have finally caught up with you after all these years and am sadden to read about how you have suffered. Distance will keep us apart but please know you are in my heart. You are a beautiful strong person who has had to endure a lot. It is wonderful that you have your family’s love and support during these trying times. Keep your chin up, girl!

    Love,
    Stephanie

    Comment by Stephanie Kinney — May 14, 2013 @ 4:50 pm

  4. Thank you for all the information you have written. It could have not been easy. I am greatful that I have finally caught up with you after all these years and am sadden to read about how you have suffered. Distance will keep us apart but please know you are in my heart. You are a beautiful strong person who has had to endure a lot. It is wonderful that you have your family’s love and support during these trying times. Keep your chin up, girl!

    Love,
    Stephanie

    Comment by Stephanie Kinney — May 14, 2013 @ 4:50 pm

  5. I appreciate your feelings in sharing your experience. It’s been almost unreal, what you’ve gone through. And so many unanswered questions still. I’m glad you’re feeling a little better right now-I hope it continues. You have been so incredibly strong, I admire your perseverance and positive attitude. I appreciate how wonderful your family has been as well in taking care of my sister. :) We love you!!!

    Comment by Sara Sterling — May 14, 2013 @ 7:10 pm

  6. Very well written, Kirsten. Reading it made me tear up at my desk today, especially when you write about not living much longer and me being your rock. I love you, Babe.

    Comment by Brent Danley — May 14, 2013 @ 8:36 pm

  7. Kristen, I hate cancer. I hate stupid rare cancers. I hate that you are handed this deck to play. But, I am honored to know you and to have the gift of reading this. I am hoping for a world where your girls never have to face this kind of illness.

    Comment by Gennyfer — May 14, 2013 @ 9:03 pm

  8. Hi, Kristen; I hope you know that you are AMAZING. I haven’t been on fb as much, but every once in a while, I jump on and tonight, I saw this. I am so sorry for all that you have endured, and continue to endure. I also hate cancer and what I have seen it do to individuals and their families. I think positive thoughts for you, Brent, and your beautiful girls daily. Thank you for being open, honest, and for sharing your perspective on things. You and Brent are such awesome people. I wish I could come back there to Maine and hang out with you! Maybe…one of these days. Lots of love, hugs, and kicking cancer’s ass to you!

    Comment by Christina Mennear — May 15, 2013 @ 2:30 am

  9. Your family’s strength is an incredible thing to witness and one of many things that so many of us love about you. Wishing you all continued new life and regrowth.

    Comment by Greg — May 15, 2013 @ 8:07 am

  10. Kirsten, Thank you for sharing your story in your words. You are in my heart always. You set a good example of being strong and enduring in a regal way. I am so proud of you and Brent for your wonderful parenting giving the girls such love and life skills. It shows. I’m so sorry for all you are going through. I love you.

    Comment by kathy longacre — May 15, 2013 @ 12:57 pm

  11. Kristen, I first came across your story after seeing a photograph that your husband posted of the Maine coast. I liked it so much that I wanted to find out if he had a business, and that’s when I first read your story. I have no words to express the deep sadness I feel over what you and your family are going through. As a mother of two girls, my heart goes out to you. The love and strength that you and your family share is amazing. I’ll continue to keep each of you in my thoughts and prayers. You’re an amazing lady!

    Comment by Karen Foley — May 15, 2013 @ 1:14 pm

  12. Kristen, I am a friend of your sisters Sara and Amy and I know your mom somewhat. They have expressed their wanting you to get better and have described some of the things you wrote here. I’m glad you were all able to be together as a family in April. I have had trials, but nothing compared to what you have been through and are going through. I should never complain again. If you are anything like Sara or Amy I know I would like you. You have a special family. Thanks for sharing this.

    Comment by Peggy Larson — May 15, 2013 @ 5:28 pm

  13. I appreciate everyone’s heartfelt words of hope and encouragement. I don’t often feel very strong, but I get through it like anyone else would. It is in large part thanks to all of you that I feel positive and continue on. Thank you for your love and support!

    Comment by Kirsten Uhler — May 16, 2013 @ 9:04 am

  14. Dearest Kristen, I can only imagine the energy it took to write this blog out. Thank you for the effort as it helped to clarify to me the direness of the situation still. Much worse than I thought. When you were able to return to work on R9 this spring I was filled with such hope and I have decided that I am not going to give up on that hope. Things can change in an instant with new medicines and methods coming down the pike every day. Knowing you, I know that you cherish every minute of every day. I love you Kirsten. Marnie

    Comment by Marnie Voter — May 23, 2013 @ 4:36 pm

  15. I dont know how I even came across this but I am so glad I did. I miss seeing you and the girls and hope you know if you need anything at all you can let me know. I didnt get to know you all as well as I wished while living downstairs but I know you are an extremly strong women, Brent and the girls are very lucky to have you, as you are them!
    Jenn

    Comment by Jenn Bell — June 12, 2013 @ 11:38 am

  16. You are just amazing! At work at MMC you always have a smile on yiur face not letting people know all the pain you have gone through. I wish I could be like you, so strong.

    Comment by Linda Jay — March 23, 2014 @ 1:18 am

  17. Thank you, Marnie, Jenn, and Linda for your kind words and concern. It’s nearly a year later…I discovered from my PET/CT scan earlier this month that my cancer appears to be in remission. Although I have been left weak and fragile from my other health issues, I am feeling much better and more positive. It’s wonderful to have such a good support system. :-)

    Comment by Kirsten Uhler — March 23, 2014 @ 8:04 am

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