Thursday, September 22, 2011

September 22

Everything has been going very smoothly so far. I am severely neutrapenic, but the only thing I really feel from that is fatigue. On Sunday, Drs. Phan, Miller, and Rosenberg came into my room, all with huge smiles on their faces. They said that I was doing wonderfully and that I could go home for a few hours each day to see Kai! So Sunday, Monday, and Tuesday I spent about 5 hours at home with my baby. But on Tuesday, just about when it was time to come back, I crashed with fatigue. I was so tired I couldn’t even move for a few minutes. I’m not good at the in-between time, the time where I’m not totally incapacitated but I’m also not normal. I always try to over-extend myself during those times. Mainly because I’m stubborn, but also because when I am home I want Kai to see me acting normally. He doesn’t seem to be bothered by my new hair (or lack thereof) or that I have to wear a mask. His smiles are as big as ever and he shows me all of his new tricks – like high-fiving, crawling everywhere, feeding himself with a spoon, and imitating others’ actions. Yesterday I couldn’t go home because I needed blood transfusions, so Jeff and his parents brought Kai in to see me.  Of course he was a big hit with the doctors and nurses. It’s so great to get daily Kai snuggles; I’m sure it’s making my new cells work extra hard.
So the last few days have been pretty busy. I am on one antibiotic given IV every 6 hours, and another given IV every 12 hours, which they just changed today to every 8 hours. I had been leaving for home as soon as my noon-ish antibiotic was finished and getting back around 5:30 to start the 6:00 dose, but now the timing will be different (not as much time between medications) and I may not make it home as often. I didn’t get to go home today because one of the side effects I am having is horrible pain in my teeth. They think it is most likely from the neupogen shots they give me each day to boost my white blood cells. It works through stimulation of bone marrow and can cause bone pain, so for some reason I’m experiencing that pain my teeth. But to rule out infection or abscess, I had dental x-rays and an exam (all clear). Over the past couple of days I have had five blood transfusions: three sets of platelets and two sets of red blood cells. Before the first set of platelets I was very hesitant. The idea of someone else’s matter in my person was a bit disconcerting. Also I was afraid that my new cells might not like this other person’s platelets and it would somehow interfere with the efficacy of the treatment. But Dr. Hessman spoke with me at length and assured me that would not be the case. She said my new cells would not even notice the platelets, because by now the new cells should be traveling through tissue looking for tumors and aren’t worried about what is going on in my bloodstream. So I got over my hesitation and did what was best for my body. That was Tuesday evening. On Wednesday, Dr. Phan told me I needed another set of platelets and two units of red blood cells. Between all of that and all of the antibiotics, I was basically hooked up to the IV all day, which is why Kai came to me instead of me going to him (also I was exhausted). There are some things I can taste when given through the IV. I can always taste the saline they use to flush my line and I can always taste the benedryl. I could also taste the red blood cells.  It was a very odd sensation. It was like the back of my throat was bleeding (but it wasn’t painful, more of a warm waterfall sensation), and knowing that it was someone else’s blood made it even stranger. But after getting the blood, I felt much less tired, so it was definitely a good thing. Today I received another set of platelets. Both Dr. Miller and Dr. Hessman have said that almost everyone who gets the chemo regime that I did requires blood products at least once, and that the amount I am getting is totally normal. I get medicines and vital sign readings all through the night, but my night nurses and I have a great system going where they put me to sleep with benedryl and ativan around 10:00, then I don’t even wake up when they hang my 12:00am antibiotics or take vital signs, then I do all of my morning blood draws and vital signs around 4:30am, and then they put me right back to sleep and I wake up naturally around 8:00, just about in time to see all of my doctors on their morning rounds. It’s a good system and I have some amazingly stealthy night nurses. While I have a relatively high tolerance for pain, don’t mess with my sleep. So my nighttime healing goddesses are particularly important, and for their wonderfulnesss, I am very thankful.
I am just starting to lose my hair. I noticed it today in the shower and now on my pillow. It’s not too noticeable yet, but will be soon. Earlier in the week, I asked Dr. Miller when she thought I would lose it and she said Thursday, so she was spot on.  I might also start experiencing some side-effects from the IL-12 once my cell counts come back up (because until then I don’t have an immune system to respond to anything), including a high fever, which Dr. Miller anticipates might happen this weekend. Dr. Phan said it will probably be about 5 more days until my counts start to come up and they have to be over 1,000 for 3 days in a row (after hovering around 0.03 for a few days, they are up to 0.3 today) before I can stay at home (and just come back each day for blood draws and monitoring).
While I am so happy to get to go home and spend time with Kai, it leaves me exhausted and with almost no energy by the time I get back. The lack of posts these past days are for that reason only; the extreme fatigue. Everything is going very well and the doctors seem very pleased so far. Of course, they can’t tell if anything is working yet, but all of my lab values and vital sign readings have been perfect, so that’s what makes them happy. Dr. Miller said that it will be my second-month scan that will really be important in terms of gauging the success of the treatment. She said it can take a while for the tumors to die and for the cells to be reabsorbed into my body. The second-month scan will be in November, so I am still sure that I will be cancer free before the end of this year.
Our fabulous MMG family delivers meals to our home every Monday and Thursday. On Monday, I happened to be home when our friend/co-workers, Shani, came to deliver our meal. She also brought me a book of crossword puzzles and a card. On the card is written one of the most fittingly inspirational messages I have ever seen. It is not attributed to anyone, so I’m not sure who should get the credit for writing this, but I want to share it because, while it certainly hits home for me, I am sure it will also for many others as they stand strong while their own winds blow. My melanoma wind is making me stronger than I’ve ever been, and for that I am thankful.
A mighty wind blew night and day.
It stole the oak tree’s leaves away,
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
“How can you still be standing, Oak?”
The oak tree said, “I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You’ll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn’t sure
Of just how much I could endure.
But now I’ve found, with thanks to you, I’m stronger than I ever knew.”

Today I am thankful for my wind; I am thankful that everything is going so well; I am thankful for the ability to see my baby as much as possible; I am thankful for my fabulous healing goddesses who amaze me every day with their caring and support; I am thankful for a visit from my mom and Bill  on Monday and from Renee today; I am thankful for everything Jeff’s parents are doing for us while they stay with us to care for Kai and so much more; I am thankful for the continue support of our MMG family and all of the wonderful dinners they are providing; I am thankful for our fabulous family and friends who support us every minute of every day; and, as always, I am thankful for my wonderful Jeff who must be exhausted going back and forth multiple times each day in addition to caring for me and working, you deserve a vacation my love, and for my perfect baby Kai. You are my roots, the deepest part of me, and for you I can endure anything.


  1. AMEN! You keep on fighting...strong, deep've got 'em, Sister!
    And the prayers of so many of us "rooting" for you!

  2. I ran across your blog, and I believe God acts in mysterious ways. I am saying a prayer tonight for you and your family. I pray that He gives you strength and courage to continue fighting. You sound like a VERY courageous woman. May God bless you and bring you the miracles you need.


  3. The Oak Tree
    by Johnny Ray Ryder Jr

    Here is the author...... it is a very beautiful and heartfelt poem. I sent it to my breast cancer survivor friend who is characterized by these words. Thanks for sharing.

    I am also rooting for you and many thanks for your bravery and courage . Can't wait to hear about your NED diagnosis in November !!

  4. God bless night-time healing goddesses, roots, and babies. I'm happy you have all three!
    Many hugs and much love ~Judy

  5. Thanks for the update and sharing the details. You are very courageous. Jeff too.

  6. Just checked in on you today. I think about you and pray for you often. I am so blessed to hear that your treatment is going well and you are able to spend time with Kai. Thank you for sharing your life with us.

  7. Love that poem! You are the tree..bending and swaying yet firmly rooted. Thinking of you always. Sending hugs your direction lady!!

  8. Jamie,
    You're simply a very beautiful person. Keep your strength up .... November is coming .... You can see it. Thanks for sharing the poem inspiring.
    Send Light and Love,

  9. Hi Jamie,
    It makes me proud to hear that you are satisfied with your nursing care. Stealth-like nurses are the best! Nothing beats sleep.

    Your experiences have made me more aware of how I can make a difference for my patients. Although I usually like to be swift and quickly get my patients off to sleep in the operating room, I'll be careful to be sensitive to their feeling or tasting the injections. Must be strange and I don't want to make the already uncomfortable (usually febrile and neutropenic, and on various IV meds and blood transfusions) uncomfortable with too quickly flushing the line. I will have the patient tell me when and how slowly to get them off to sleep. Your experiences are positively affecting others. For this, I thank you, for sharing your experience.

    Stay strong! Keep up the good work.
    Kate Durkan

  10. Dear Jamie,

    I am deeply moved by your Sept 22 blog and by the responses being sent to you. You are bravery personified and your strong roots going deep are apparent. You are in my prayers and I am waiting eagerly to hear your future reports.

  11. Jamie-
    I'm so glad things are going well, though I knew they would be. You are an amazing woman, keep up the fight my friend. We are all here with you. My Dad had to have blood transfusions and he also wonderd about having someone else's blood in his body- he made funny jokes about it taht I'll share with you later. But, that blood gave us so much more time with him, it made him strong, as it will you. I give blood in his honor as often as I can. So others can have more time or use my blood to get stronger in order to live a LONG, happy, healthy life. <3
    Love you and hope to see you soon,