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The nice people you meet along the way.

March 16, 2010

On Monday the 15th I had a follow-up MRI of my brain to see if the two new 3mm lesions they found two months ago have grown. I won’t get the results until  Thursday, when I see the oncologist — unless the MRI folks send the results to the naturopath as I requested. I see the naturopath on the 17th and the oncologist on the 18th. I will, of course, let you know what I found out as soon as I am able. My family gets notified first, of course.

[picapp align=”right” wrap=”true” link=”term=people+smiling+cartoon&iid=309705″ src=”0306/0000306446.jpg?adImageId=11334757&imageId=309705″ width=”234″ height=”284″ /]My experience getting the MRI yesterday reminded me that although I have met my share of bozos on this journey, a few of whom work in the tanning industry (what was with Mori anyway??), and the bozos are certainly fun to read and write about because they’re such easy targets, I have also met some truly wonderful people such as the following (and I apologize for leaving anyone out and for this long long sentence… note to self: you are not Mark Twain and you should not make one sentence into a whole paragraph) —

You. Thanks to everyone who visits here and prays for me, whether you comment or not. It really does help to know you have my back and/or are in my pocket.

MRI technician. I’m sorry I didn’t catch her name to give her full credit. If you’ve never had an MRI before where your head and body are stuck in a small tube, it might be helpful to know that it’s very noisy. [picapp align=”left” wrap=”true” link=”term=MRI&iid=5154921″ src=”c/a/b/a/closeup_of_the_d9ce.jpg?adImageId=11329177&imageId=5154921″ width=”500″ height=”330″ /]How can I describe it… hmmm… well, think of a chorus of tiny men with large hammers pounding on the outside of the tube and singing horrible things in mechanical voices over and over and over again. During one segment of the MRI chorus they repeat DIE DIE DIE DIE DIE DIE DIE for 5 minutes. The entire scan lasts for 20 to 45 minutes during which time you are not allowed to move. Further, midway through they inject you with an iodine-based dye that makes you nauseous, feel warm and squirmy, and gives you the urge to go to the bathroom. Then look forward to repeating thsi process every two months for the rest of your life, and add to it the anxiety of waiting to see if the results of the scan mean that you will actually DIE DIE DIE very soon.

This particular MRI technician has met me before and we’ve become acquaintances. Yesterday she talked to me about her sister-in-law who had a similar diagnosis to mine. That diagnosis was four years ago, and her sister-in-law is still going strong. She also, with her hand on my shoulder, told me about her husband who does gamma knife surgery at another hospital and described all the good results he’s seen. I know all this, but it helps to have someone’s hand on your shoulder, looking you straight in the eye, and giving you first-hand knowledge of real people who are beating the beast. I gave her a big hug. Other people at various other scanning places have helped ease my fears and made me get through another day with just a little more courage. So, THANKS to all of them. I know it’s a tough, high-pressure job.

[picapp align=”right” wrap=”false” link=”term=acupuncture+treatment&iid=275908″ src=”0272/b26da4cd-5d52-42b2-9450-3da213c25df8.jpg?adImageId=11333234&imageId=275908″ width=”234″ height=”352″ /]Insurance lady. I had a great experience talking with someone from my insurance company today. I know. I almost passed out too. There’s a “helper” kind of program that Premera Blue Cross has to assist people with complex problems to negotiate through the morass of coordinating care and figuring out what’s covered, and what’s not covered. Where appropriate they can also bend the benefits a bit for you, though I don’t quite understand yet how “bendy” that might be. It’s great to know that there are nice things happening within the insurance industry and now I have someone who can answer all those questions like “how many times can I go to the acupunturist this year?” Twenty-four times, it turns out. Yay!

Doctors, nurses, alternative practitioners, and various people in various offices. I really want to thank the receptionists in my oncologists office who put up with my sick jokes, especially the one who confided her melanoma diagnosis to me. I thought she was extra sympathetic for a reason, particularly when she said she was sorry that they all know my name when I walk in the door. It takes some sensitivity to know that it’s not a lot of fun to be known by sight in an oncologist’s office unless you work there. [picapp align=”right” wrap=”true” link=”term=pun&iid=7310749″ src=”f/5/9/0/A_SubLime_Character_779a.jpg?adImageId=11333790&imageId=7310749″ width=”380″ height=”302″ /]I’d also like to say that I’m genuinely impressed with Dr. Ingber, the oncologist I see (I’ve stopped saying “my oncologist” because that’s just darned icky in so many ways). He also has put up with my horrible puns (as bad as the one above) and all my sometimes obnoxious questions, and he hasn’t rolled his eyes even once over these past 6-ish years. How many oncologists go from being professors of literature at Harvard to graduating as an MD because they just couldn’t see being in the classroom forever? Ummm… probably one, but his background gives him quite a bit of depth and we talk about books sometimes instead of cancer. That’s refreshing. He also has a great nurse/assistant, Carol, who also puts up with me, and the nurses who administer the poison are fantastic. They don’t like the stuff any  more than I do, and theirs is a high-risk occupation. Who knows how much of the chemo gets into their systems?

The alternative medical professionals. Wow. First, the people in their office are wonderful, espeically the scheduler Barb. She goes out of her way to make all those appointments easier on the patient rather than convenient for their office. The best part of the alternative therapists — the naturopath, acupuncturist, and mind-body therpist is that they have a lot of time to listen. They schedule it that way. The oncologist is just more pressed for time because of the nature of his work, but the naturopath schedules an hour for each patient as does the acupuncturist — longer if necessary. My first appointment with the acupuncturist lasted 2.5 hours. Two of those hours were just talking. Impressive.

[picapp align=”left” wrap=”true” link=”term=internet+group&iid=5065173″ src=”d/3/f/1/Several_floating_laptop_1c31.jpg?adImageId=11333732&imageId=5065173″ width=”234″ height=”234″ /]Great support groups. If you  have a chronic illness, go there. Cancer, heart disease, fibromyalgia, asthma,  HIV, kidney disease, whatever. I’ve found people there who know the research as well as people who know the mental health issues and can keep you sane in the middle of the night. I’ve also continued to receive support from a Mom’s discussion forum that I joined when Daniel was 18 months old. I no longer have time to visit the site, but many of them visit here and post; they’re from all over the world. There’s also a wonderful support group at church that I’ve managed to attend only twice… they meet at 8 a.m. on Sundays and I can barely get out of bed by then these days. But when I go they’re fantastic, and very encouraging.

Givers. I am not as nice as you people. As much as you nice people will say “Yes you are,” I know I’m not. I’m just not. The meals! The cash! The prayers! Everything… You are incredibly generous and thoughtful, and I am humbled.

[picapp align=”center” wrap=”false” link=”term=thanks&iid=239342″ src=”0235/364df523-abe0-4a9c-adde-2c202c9a43fc.jpg?adImageId=11334359&imageId=239342″ width=”500″ height=”333″ /]

11 Comments leave one →
  1. March 16, 2010 10:40 pm

    This was a very moving blog. It is lovely to read of people who are prepared to be so kind. Hopefully you will encounter much more kindness along the way. Good luck with those MRI results. I hope they are everything you wish them to be. My mum had an MRI following a stroke a few years ago and she hated it

  2. Sarahtee in Aus permalink
    March 17, 2010 4:09 am

    Jill, you did incredibly well to stay still for the MRI. I’ve only had one but I couldn’t stop twitching…

    Best wishes for great results and as a consequence less icky treatment down the track 🙂

  3. Maria permalink
    March 17, 2010 7:11 am

    Hi Mrs. B,

    We’ll be praying for good MRI results. It is nice to read how many kind people you’ve encountered along this path. I’m guessing many of them, like us, are very glad to be acquainted with you, too.


  4. Amers4 permalink
    March 17, 2010 9:43 am

    Maybe that MRI machine is not yelling “die die die die” but “vai vai vai vai,” which is Italian for “go go go go!” It’s what the cycling fans (tifosi) say to encourage their favorite to go faster (like “allez” to the French fans). So it’s actually cheering you on to victory instead of trying to kill you. 😉 Vai, Jill, Vai!

  5. March 17, 2010 4:15 pm

    It’s nice to hear about all these people treating you so well. That’s conforting. 🙂
    Now make a note on your scheduler to write a St. Patrick’s Day post on the day before Thanksgiving, since you gave us such a nice Thanksgiving post on the day before St. Patrick’s Day!

  6. Bemused Boomer permalink
    March 17, 2010 6:27 pm

    Visualizing great results for you!

  7. Colleen permalink
    March 17, 2010 8:27 pm

    We are looking forward to the results of your MRI. You are as always in our prayers. Sometimes when I have playground duty etc. at my school you pop into my mind and heart and I pray for for your healing and for your family. I am flying to North Carolina on Sunday and then Ed on Thursday as Michelle is giving her defense talk for her doctorate in Genetics on the 29th. It should be exciting! She actually has an interview at the University of Washington on June 3rd. Take care and we are proud of you for putting up such an amazing effort to beat this cancer.

    “Therefore if anyone is in Christ, he is a new creature; the old things passed away; behold, new things have come. 2 Corinthians 5:17
    Thinking of you.
    Colleen and Ed

  8. March 17, 2010 8:55 pm

    I like Amers’ comment. Vai vai vai it is!

  9. Sandy Bartell permalink
    March 18, 2010 8:26 am

    What a heartwarming and encouraging post, Jill. Your message just underscores how much emphasis we put on the physical aspects of illness while neglecting the emotional/spiritual parts of it–which are AS important (if not more so) than the physical aspects. To have this much support from so many sources has to be an antidote (at least from a metaphysical point of view) to the physical poison of chemo. When people ask to “help” when you’re struggling with a major illness it must be frustrating to you becuase both you and they know they can’t “help” to make it go away. But to have a kind hand on your shoulder, an honest but hopeful appraisal, an overriding desire to put YOU above insurance money–all these things truly HELP. I think God puts these people in our lives and the more we look for them the more of them we see.

    Speaking of psychological things, I’ve never heard anyone say they had a great MRI experience. I had one for the first time several years ago for a herniated disk. I’m claustrophobic and I didn’t realize why they were offering me valium (they asked if I was claustrophobic, which I denied), but as soon as I got into that tube and saw that it was only an inch away from my face and I had to be in that darn thing for 45 minutes I wanted to panic and scream. The only way I survived was to keep my eyes closed the entire time and pretend I was in a beautiful meadow with limitless, expansive skies all around me.

    So back to my original point that the psychic aspects of illness are just as important as the physical ones. I’m glad you’re seeing a naturopath. I know they deal with the physical just like conventional doctors do, but they have a more holistic approach.

  10. mom permalink
    March 18, 2010 7:08 pm

    I want to add you to your list, my Jill, for all the kindness you have shown me especially when I know you are not feeling well. At this point in time, for me, you are the kindness person I know, along with Debbie, for transporting me to and from my appointments. With your love I can make it. Love you and prayers continue for you, as often ad I can say them. Mom

  11. Lisa permalink
    March 19, 2010 10:41 am

    Jill –

    I agree the people you meet along the way will always be recalled and treasured. I always pray those with the compassion and motivation will someday get a very special place in heaven. I will add to my prayer that you meet more people with that special something versus the other kind!

    Sending hugs, prayers and white light to you and to those who travel on this path or a parallel path. May the paths cross in glorious ways!


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