Monday, March 29, 2010

FIRST ITEM ON THE AGENDA: BOB IS VERY MUCH ALIVE!!!!

Got a rather disturbing e-mail from a good friend of Bob's this afternoon, which prompted an immediate phone call, to reassure this friend of a number of things, most important being: BOB IS NOT DEAD. Good lord, that sounds like a twisted take on the ol' Paul McCartney hoax . . . For the love of all things good, I have no idea how this poor guy got the message that Bob had died, but hopefully it hasn't spread far, and that Bob's friend has been setting the record straight. Bob is very much alive, thank you very much, so please pass that one thing on to anyone and everyone, if you do nothing else today. He has beat the odds, once again, and if there ever was a doubt in my mind before about how this big, crazy story will all play out, it is gone. Seeing the events of the past 24+ hours has made me a believer. In Bob. He will beat this. He will be well again. Amen.

When I got to the hospital this morning, the nurse told me they were in the process of extubating Bob; e.g., removing the breathing tube. His lungs were working great, his heart rate and blood pressure were very strong, and he was really, really anxious to get that damn vent out so he could talk again. Hell, to just breathe and swallow unencumbered again. I should also mention that at no point was the ventilator doing the breathing for Bob; it had been inserted for precautionary measures, should Bob's lungs become compromised in any way during or after the heart attack.

I arrived in his room just before 9 this morning, as he was in that half-way land between sedation and consciousness. To get the tube out, the technicians needed Bob to be alert enough to be able to follow their direction, but sedated enough to not put up a big fight; when I arrived, they were beginning to prep him for the extubation. He knew who I was, and again tried communicating with me. Bob's dad entered the room shortly after I did, and it was clear that having us there was irritating the hell out of Bob, he was trying to talk to us, communicate in some way, but was just making things worse, so we left the room, reassuring him we'd be back as soon as the vent was out. He appeared to understand. Maybe an hour or so later, I went back and peeked into his room. Bob was lying on his back, sans breathing tube. His nurse beckoned me to enter and I went to his side. His eyes were still very puffy and coated in crusty goo (oxymoron, I know, but that's what it was), but his voice was stronger and clearer than I expected. He asked me what had happened, where was he. He didn't know, or didn't remember, that he'd had a heart attack, that he was in ICU.

For the first several minutes, all I could do was hold his hand, stare at him. Deja vu, all over again. . . I tried to summarize the past 24 hours as best I could, trying not to overload him with details, just feeding him bits and pieces as the minutes and hours went by. Over the course of the day, he became more and more cognizant, stronger and more lucid and was able to start piecing together what had happened, from his own memory, from what the medical team has shared, and from what we were telling him. He remembers feeling chest pain while on 7D, during his chemo—he thought it was Saturday night; I was told it was between 4 and 5 a.m. Sunday—calling his nurse in because he just knew something was not right, then his nurse calling for help and a swarm of people in his room. Then, he woke up. Today. He thought it was Sunday. It's probably a good thing he doesn't remember yesterday. He asked when I was called, what happened when we got to the hospital, whom I've spoken with. I could tell he was in immense pain; he winced and grimaced constantly as we talked. I was told that, because of his precarious condition, they were unable to give him any of his pain medications, so they got far behind in treating his pain. The main goal of the day was to get back on top of the pain and control it from here on out.

Bob's parents and Nancy were all at the hospital throughout the day; Brian and Claire and Grace arrived later in the afternoon. We took turns popping in to see him, to squeeze his hand, wipe the crud from his eyes, give him a kiss. Each time I went in his room, he seemed visibly stronger, more clear-headed, but still very much wiped out and baffled by the events of the past few days. My mom popped in for a visit in the afternoon, and later, after everyone else had left, Jill and Amelia stopped by for a Bob Sighting. Amelia brought Bob a pink Easter egg with a York Peppermint Patty in it. He accepted her treat gratefully.

I spoke with many doctors; Palliative Care team was in to get the pain back under control. The ICU team is also continuing with the flushing of the methotrexate from Bob's body, which, according to the oncologists on staff, is progressing right on schedule. I called his primary oncologist, who was gone for the week—his nurse said she'd try to contact him, as they were unaware of the weekend's event—he eventually called back, and I relayed the past 24 hours of Bob's life to him. I spoke with several cardiologists, with the nurses, anyone who is tending him, anyone who would listen to me, and am repeating my mantra: why, why, why, given Bob's health history, has cardiology not been part of Bob's care team from day one, even though we've stressed the very important details and concerns of his heart history and the effects chemo can have on even a healthy heart. I took the lead of the doctors; I trusted that they knew what they were doing, based on Bob's history, as well as his present condition. Always, I'm met with blank stares and lots of hemming and hawing . . .

No one can give me a clear reason as to why the heart attack happened. Maybe there is none. Maybe I'm asking for the impossible. Asking a question to which there is no answer. But I have demanded that, from here on out, cardiology be side-by-side with oncology, as far as Bob's treatment is concerned. Every step of the way. Why that wasn't the case from the beginning is unclear to me; we asked often, given Bob's history, but so far, no one has offered even an inkling of a reason; maybe it's not standard protocol? Maybe it's just so rare a reaction that there isn't enough occurrences to warrant a "protocol?" What else should we have done, could we have done, to do to make his doctors aware of his heart issues, to stand up and take notice? Maybe this was unpreventable, that nothing, no one, could have predicted this, that no medication could have thwarted it, no test could have picked up on a clue . . . Maybe what I'm asking is the result of that crystal clear 20/20 hindsight, but right now, all I see is such a damned reactive system, that if only someone had truly listed to us, and put a few precautionary measures into place . . . and am left wondering why do I feel like we have to be the ones calling the shots? Like I simply cannot trust that the doctors will do what's best for Bob? That we cannot rest, cannot lay down our guard in this battle, for even a moment . . . Wallowing in shoulda, woulda, coulda land again . . . all the while, being ever grateful that Bob is the fighter he is . . .and there I go, thinking again. I just need to stop that. Maybe when I'm at the U tomorrow, I'll ask if they can give me something, some medication for that ailment . . .

So much more happened over the course of the day, I'm having trouble separating and lining up much of it, into a neat, coherent story. All the details blend and swirl together, I'm having trouble extracting them from each other. But I know for certain I did sit with Bob today and watch him eat lunch—a PB&J sandwich and raspberry sherbet, then dinner—chicken nuggets, tapioca pudding and a Coke. Together, we sat, piecing the events of the day, like a crazy quilt. I've told him about all the people praying for him, rooting for him, pulling for him. It's astounding, the messages we're getting, from near and far. Keep it coming, peeps. We're feeling the love, we're feeling the love.

Oh, and before I forget (though I know I've forgotten many details already): new course in treatment. Sounds like no more chemo before surgery. Right now, Bob's heart takes priority. The goal is to get him over this rather large bump in the road, then address surgery when the docs deem him strong enough to handle the stress and demands of it, which will probably be pushed back a few weeks.

Oh, and in case I didn't mention it yet, BOB IS VERY MUCH ALIVE. VERY much alive.

Peace, love and raspberry sherbet.








10 comments:

  1. Yes, he is very much alive! He's the biggest fighter I know. He has battled his way through childhood cancer, through a heart attack, through adult cancer, through another heart attack, and will endure, taking in the love, energy, strength, prayers of those from near and far. We love you to the moon, Bob, Jen, Bob's parents and sister/her family. We send out all that is good to you all, and are here whenever. So good to see you today, Bob and Jen. Amelia hopes you can enjoy the candy bar in due time. One moment at a time.
    xoxoxo Jill, Jade, and Amelia

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  2. Good news. Keep on fighting!

    Malmgren Family

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  3. Thanks again for the update, but we are true believers in 'Bob' and knew that he that he was alive....no keeping this guy down, besides that his crazy red headed wife would NEVER let that happen!!! :-)
    However prayer, thoughts,pixie dust, meditation, dancing, etc. never hurts. So this shall continue.
    Very happy to hear that Bob and family are doing better.
    PLH&RS!! (Peace, Love, Happiness and Raspberry Sherbet)
    -Jodi Kramer

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  4. Jen, thank you for taking/making time, amid all of the anxiety and stress, to keep commenting on your blog to let everyone know how Bob and you (and the entire family) are doing. One hour, one day at a time. Bob and you are in my thoughts and prayers, especially to the Lord God Mary (BVM) every day!
    Love from Suzanne

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  5. Jen, thanks for keeping all posted on Bob, understanding that at times it is tough to do. We are so happy to read that he is progressing well. Bob, keep it up!!! Joan and Buck

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  6. Jen, you are so strong!! I admire that about you. I will keep praying for Bob and you and both your families!!

    Lisa(Eitzen)Bierker

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  7. Jen, don't know where you find the strength, the grace, to write at times, but your posts are definitely part of Bob's comfort and healing! So glad to sign on here today and read of the strides he's made in a mere 24 hours. Thinking of you both. Mo

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  8. Jen and Bob-- Thanks for all of the updates. You are amazing people. None of this makes any sense. My family is praying strength, comfort, and wisdom for you and for your families.

    Kari Blackwell Janzen

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  9. Jennifer,
    Please know that you and Bob are in my prayers. Bob is a very strong man, and he will get back on his feet. He has such a great support team on his side. If you need ANYTHING, please so do not hesitate to ask.
    Peace and Love,
    Amy

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  10. Hey Jen, Thanks so much for updates...I'm tellin ya again this should be published nationally, you are both such gifted writers!

    Bob is one tough cookie and you are his Rock. I'm so proud of you girl! I continue to pray for healing for Bob and strength for you to keep on keepin on! Love you tons!
    -Lisa H

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