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Friday, August 10, 2012

The Bigger Story Chapter 2

We're still climbing in the wayback machine. . . a little further along in the process. . . still processing, reacting. . . planning. . . figuring out what to do.  

I'll probably post this Friday, and then post the last of the "already-written" stuff on auto while I'm on vacation.  But I probably won't really be able to respond to comments on Chapter 2 or 3 until I get back from vacation.  I'll be able to READ them. . . but replying is a pain in the ass from the iThingies.

Read Chapter 1 Here
Chapter 2:  Exploration (Days 4 – 41)
When you choose your own adventure you have the luxury of exploring first, then discovering.  When your adventure chooses you, it’s the opposite.  The Day My Wife Was Dying, was the day she learned she had cancer.  We then set off on a fact-finding mission to figure out just what sort of adventure had picked us.
She had her diagnosis, but really no idea what to do with it.  Do you talk to an oncologist, do you talk to a cancer surgeon?  Who leads the charge?  Is it the general practitioner?  Her OB/GYN?  There was an overarching sense of a ticking time bomb.  With Christmas approaching we wanted desperately to keep things as normal for the kids as we could, but this is cancer we’re talking about.  With my mother’s treatment in the back of our minds, we thought we had some time to work with.  They had told my mother when she had visited with the doctor that she could and should go on the vacation she had planned to take prior to coming back and having the surgery, so we were optimistic that they’d tell my wife the same thing; in essence, enjoy your Christmas, save your cancer for the New Year.  Hurray for 2010!  Oh. . . hi, cancer.
We learned that cancer surgeons were step one and got a list of them from the radiologist at the hospital.  My mother-in-law was a nurse and called her friends who recommended a few people.  My mother loved hers and recommended her.  The first day of the following week Leslie called seven of them, eliminating some simply by their ‘first available’ dates being further out than what we found comfortable. 
She faxed pathology reports to doctors’ offices, or at least arranged for them to be faxed.  Over the phone she was able to capture a lot more information about her specific type of cancer and the types of treatment she could expect.  I was at work so I received periodic updates as she called doctors and they (or their nurses) returned those calls.  We settled on three doctors, my mother’s doctor and two that the hospital had recommended, and I had researched (okay, I googled her).  Two of the three worked in the same office, and when we couldn’t get our appointment confirmed in time, we eliminated one of them and opted to keep two women.  It was more or less an interview process.  If one of them blew us away we still wanted to get a second opinion, but we’d go with the one we felt warm and fuzzy about.
The first appointment was with Dr. Professor.  No, that’s not her real name, but wouldn’t it be funny if it were?  No, Dr. Professor not only was a celebrated cancer surgeon but also was also the Clinical Assistant Professor at a Medical College.  Perhaps that should have warned us away.  It did not. 
The visit itself overall was fine.  I give it a ‘C’.  Doctor Professor was caring and compassionate.  She appeared to know what she was about.  She made sure we left knowing what our options were.  If we had met just Doctor Professor perhaps I would have upgraded the visit to a ‘B+’ .  But, and this is an enormous ‘but’, when you sign on with a doctor, their staff also comes with the package.  You’re not just getting Doctor Professor, but also her nurses and physician’s assistants and radiologist and etc.  And, and this is an enormous ‘and’, in the case of a professor, her students.  And so my wife, who was scared and uncertain and wanted nothing so much as to be placed in the hands of a caring but competent surgeon to guide her on the road to recovery instead found herself in the awkward hands of a medical student as he used her cancer experience to generate some experience of his own.  It didn’t help his cause that he was male.  That made her less comfortable, and he couldn’t help his gender.  It also didn’t help his cause that he had every appearance of having just entered Junior High, though his tie and little doctor’s coat helped that out a ‘little’. 
What followed Doogie Howser M.D. (in training) was a cavalcade of exams.  First his, then a physician’s assistant, then Doctor Professor herself, praise the lord.  At each exam my wife was asked a series of questions.  In no instance were the questions allowed to be different.  Medical history/age of children/which breast/age of grandmother when she found her cancer/and on and on.  The identical questions were asked no less than four times.  The admitting nurse took them.  Doogie took them.  The Physician’s Assistant took them.  Dr. Professor took them.  At one time I looked around the room where my wife, discomfort evident, was being examined and discussed, and counted six medical staffers.    
Early on in the process I told Leslie to tell Doogie that she was uncomfortable being examined by him and to fetch the doctor for her, but she wasn’t comfortable doing that either, so I suppose she chose the lesser of two discomforts.
I was disappointed in the process to say the least.  I do understand that the best way to train people to help others better is to get them real world experience.  I just don’t appreciate my wife’s misfortune being used as fuel for that experience.  I just want her health care managed by someone who knows what he/she is doing.  I’m sorry, but my wife’s cancer is not your set of surgical training wheels.  Or at least it shouldn’t be.
An appointment to get an MRI was set up with promises to forward results to Dr. Professor upon receipt, should we wish to pursue Leslie’s healthcare through her office.  The MRI was scheduled four days later and was actually handled at my mother’s doctor’s office, the Breast Cancer Center of Passavant Hospital.
Wow.
That’s right, I started and ended a paragraph with just a word, “wow”.  It’s the subject of the paragraph, the description of the experience and the conclusion of the paragraph all wrapped up in one.  But is it a good wow, or a bad wow?
Before the visit to the Breast Cancer Center, my mother had a follow-up with her doctor.  I’ll call her Doctor General.  I’ll be talking more about her later.  My mother had tried to piggy back an appointment with her doctor or to delay her visit so that Leslie could take her time slot.  It hadn’t really worked out, but the two did chat about Leslie’s cancer and what to do.  Leslie had also talked to the nurses there and had been getting a lot of the information about her condition from them.
So when we arrived at the Breast Cancer Center, although we weren’t meeting with the doctor yet (just getting some imaging work done) Leslie was known.  She was hugged.  She was greeted.  She got a sympathy card from the staff.  She was a cancer rock star. 
And to be fair to the folks working at the Breast Cancer Center who are not in Doctor General’s staff, they went above and beyond the call of duty as well.  The nurse who wheeled us into the changing room prior to my wife’s MRI was a cancer survivor.  She’d had a double mastectomy with reconstructive surgery and offered to show her how it looked.  That's right, she offered to go topless for her.  Leslie (in my absence, of course) took her up on it.  I don’t know if that’s protocol, but it was offered genuinely with zero self consciousness and it took some of the scariness out of the whole thing.  We knew about reconstruction, but how would it look if she needed it?  Now she knew.  Everything was handled well. 
Earlier I said that when you remove the threat of imminent death everything seems to be good news, and although that remains true compared to that threat, once the threat was removed the idea that it was ever really a threat started to fade too.  And that’s when each new bit of bad news began to sink a little deeper into our tragedy-thickened skins.  The MRI results came back and said the tumor was three times larger than what we had thought.  It was 5.5 cm, not 1.8 cm.  And although the prognosis remained the same, the result was not the “woohoo” I may have led you to believe it was.  There were more tears, and long discussions.  I remained pretty comfortable regardless, but it’s far easier to remain at peace when you’re not carrying around a tumor that has somehow gone overnight from the size of a penny to the size of a golf ball.  And yes, I measured a penny and a golf ball to accurately write the comparison.  Her new tumor size pushed off the reassuring “Early Stages” breast cancer graphic (from the poster in the examination room showing a tiny little tumor on the woman’s transparent breast) into the more ominous “Advanced Stages” graphic where the transparent breast had a larger percentage of the picture devoted to the malignant bump and went on to indicate it might have migrated to the lymph nodes.
Also, we’d been given some literature after our visit with Doctor Professor and reading cancer literature about what one might ‘possibly’ expect when receiving chemo is not a pleasant activity.  Each ‘possibly’ is translated to a ‘probably’ in the paranoid brain, and when the probablies include such things as bleeding, mouth sores, hair loss, constipation, fatigue, and more, then you start getting a little depressed.
The appointment with Dr. General was a couple days away and we used that time, once more, to calm ourselves down.  Leslie had a friend who had almost exactly the same size tumor and had undergone chemo and surgery and was, like my mother, good as new, or at the very least certified pre-owned.  That much, again, got us through the interim until we were able to meet with the good Doctor. 
And so we met with the doctor.  I said when you pick the doctor you get the staff, but I think if you picked this particular staff I you’d pair it with any reasonably competent doctor and consider yourself well-served.  In this case the Doctor was icing on the cake.
Little things mean so much.  The ridiculous gown that nobody can explain how to properly tie and inexplicably have a pocket that ends up being centered over your left shoulder blade had been replaced by a soft white terry cloth gown with a pink cancer ribbon stitched on the front.  How much money does the hospital save keeping those threadbare monstrosities in service and rewashing them for decades?  I don’t know, but you’d think with the amount of money it costs to see a doctor every hospital in America could afford to foot the bill for a nice soft terrycloth robe, because my wife loved it.  Loved it!  We almost stole it we loved it so much.  But we didn’t.  Seriously, cause that’s just inviting a karmic beatdown.
Doctor General was very no-nonsense.  She talked fast and didn’t wait to see if we were taking notes.  She made certain assumptions about what we knew and what we didn’t know and she just blazed a trail of treatment based on the path she assumed we were already on.  And maybe that would turn some people off.  But it was very comforting to my wife.  She liked the idea that someone was, at last, taking charge of her treatment.  Someone had a plan.  Throughout the process we were both aware that we could have stopped the Doctor and gotten her to explain certain things a little more clearly, but honestly, we’d already been through it with one doctor and we already knew the route we wanted to take.  She confirmed some things; for example, chemo was a must.  She explained the size of the tumor as shown on the MRI was more accurate than the Ultrasound image and that, although the MRI has a tendency to exaggerate size, it doesn’t exaggerate it by all that much.  She explained that she would be removing lymph nodes, specifically the sentinel nodes, from under Leslie’s arm and biopsying them to see if there was any movement, but that it really didn’t matter all that much if it had because the treatment remained the same, though it meant the other lymph nodes would probably also need to be removed after surgery.  So many things we learned.  But first we just had that meeting.  And Doctor General’s staff was so kind and considerate, and the terry cloth robes were so soft and fluffy, and Doctor General seemed so on top of things that our decision was made.  We’d been blown away and would call Doctor Professor the following day to tell her we were going to get treatment elsewhere.  We learned later that when Doctor General left her old job to work at The Breast Cancer Center, the person her old hospital had hired to fill the job opening had been Doctor Professor.  Dr. Professor was the fill-in for Doctor General’s vacated position.
We left The Breast Cancer Center with appointments for the sentinel node procedure (lymphoidectomy) and a follow-up appointment as well as a scheduled meeting with the oncologist who would handle the chemo.  Doctor General gave us a list of a few and had her staff make an appointment with one, she also encouraged participation in any clinical trials that might be going on.
A week and a half later we met with the oncologist.  We’d been warned he could be abrasive or standoffish, but we’d also been told he was the best.  On the flip side, we were told that although he may be the best, essentially every oncologist follows the same chemical cocktail recipe, at least all of the oncologists in the hospital network we were currently in, and that we could expect to get just about the same thing anywhere we went.  We walked into his office expecting the worst and were pleasantly surprised.  We were given information about a clinical trial, but also information about the standard of care we’d receive if we didn’t participate. 
He made her feel confident that she’d handle the chemotherapy just fine.  He explained to her that the drugs they used were so much better than the drugs of 20 years ago and the symptoms so much less, and that while the literature listed all the possibilities, the probablies were a much shorter list.  And most importantly he said it made no difference to him if we waited until after the holidays to begin treatment or not.  There’d be a Christmas after all!
We were almost done exploring.  Prior to the sentinel node surgery, Dr. General scheduled a bone scan.  All the familiar trepidation was there.  Every new scan brought us new awful news.  Each new procedure brought new tears.
Amazingly, the bone scan was negative.  If the lymphoidectomy showed no cancer in the sentinel node we could complete the crazy good news trifecta.
The day of the surgery I drove her to the hospital and we waited as they prepped the room and explained the logistics.  It was a slick operation with a flat panel screen giving patient numbers and their locations in color coded blocks.  The nurse at the desk provided me with a patient number as well as an explanation of what each color coded block meant.  One was surgery, for example.  If my wife was in surgery, the block would be red or green or something, and I’d look on my sheet, find the corresponding color, and learn that it meant I had about two hours left to wait.  Each color code had a one or two sentence write-up that explained what was going on, and when it would be done.  We met again with the doctor, made small talk, went over the surgery, and she breezed from the room.
Leslie was taken away and I followed her progress on my sheet and on the monitor.  When the surgery was over Dr. General came out to tell me that everything had gone well.  No problems.  Leslie would be in recovery in an hour or so.  They’d get the results of the biopsies on Friday (that would turn out to be overly optimistic).
She recovered like a champ.  She had one blue breast from dye that they’d injected in order to find the sentinel node or nodes to figure out which nodes to take, and she wasn’t allowed to lift anything over 15 pounds above her head for the next five days or so.  Doctor General said she didn’t want her to “stretch my incision”.  She spoke about the incision like people talk about their children.  Don’t you talk that way to my son.  Don’t you stretch my incision.  It was hers.  I asked her if this would interfere with Leslie’s duties ironing my shirts and doing my laundry for the weeks, and she smoothly replied that she recommended Leslie not doing any laundry or ironing for at least a year, then winked at Leslie.
We went home and Leslie rested and took pain pills.  I think they were the only pain pills she took.  After that first dose she didn’t need them anymore.  She said it felt almost like she’d gotten a brush burn under her arm after it had started to heal a bit, but the pain never got bad enough after that first day to take more medicine.
Recovery was relatively straight forward.  She didn’t lift our youngest and put her to bed, nor did she feel comfortable bathing her, but apart from that, it was business as usual.  She had a large blue stain on her breast from the dye they’d used to find her sentinel nodes, and a feeling of “brush burn” where they’d performed the removals, but otherwise she was fine. 
We waited for the results to come back.  Again, we counseled ourselves that cancer in the sentinel nodes made no difference to treatment and none in the prognosis, but they’d more than likely remove them all after radiation was over as a precautionary measure.
And there was cancer in the lymph nodes.  Not in the one or two they’d biopsied that were not sentinel nodes, but in the sentinel nodes, the primary filters of the fluids draining from the breast, there was cancer.
Again, not “woohoo” news, but not completely unexpected, this news solidified her position on the “Advanced Stages of Cancer – Stage III” graphic.  At least she wasn’t Stage IV, metastatic cancer.  When the cancer moves out of the lymph nodes into other parts of the body it’s considered to be metastatic. 
We met with Doctor General.  She gave us our options.  She even held out the carrot that if Leslie responded particularly well to the chemotherapy we had in our future she might not have to remove all the lymph nodes at a future date.  She said it was “negotiable.”  “Negotiable” is another one of the ‘little things’ that mean so much.  Good ol’ Doctor General. 
The adventure that chose us on “The Day My Wife Was Dying” had been duly explored.  It was a little scary, and a little overwhelming, but I saw and I think shared with Leslie, a definite vision of a happy ending waiting for us.
With a clearer picture of what to expect and what kind of effort would be required to get that happy ending we both wanted, we focused on who to tell, and how and what to tell them.
Continue to Chapter 3:  Here

36 comments:

  1. Hey Jim... I'm really glad you wrote this stuff down when it was still fresh in your mind. It's easy to forget how it feels to be at that stage where everything is confusing and you don't know what all the words mean yet, words that come to be such a part of your life that you can't believe there was a time you didn't know them.

    I hate that you have to know the words.

    Hoping you and Mrs Jim and all the little Jims have a kick ass holiday dude.

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    1. Sooooo much has faded. I reread what I wrote then and think. . . "Oh yeah!" I have to start writing again before it's all gone. Hell, I can't even remember what I ate for breakfast yesterday.

      Wait. . . fiber one. . . I think.

      Thanks, Bec!

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    2. If it was fiber one, you will remember eventually 'cause it WILL remind you.

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    3. I'm pretty regular regardless. . . where do you think I am when I'm writing all these responses???

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    4. This puts reading your comments in a whole new light.

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  2. Wow, Jim. Thank you for sharing your process and your family's and your journey. ((hugs to all))

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  3. Oh, I'd be the same way over the fluffy robes. A girl needs a fluffy robe. Is chapter 3 happily ever after? Because that's all I'm wishing for here.

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    1. Chapter three, unfortunately, isn't the ending. And it's all I wrote. . . so I have to finish up the story.

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  4. I think it's awesome that you're sharing this story, Jim. When Little Miss was diagnosed with MERLD, and then epilepsy, and then autism... I wen tout to the internet -- to people's blogs -- to learn the REAL stories about what it means. I can totally imagine people coming out to your blog and finding reassurance and acceptance. You're doing a great thing here. Good on you!

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    1. Now. . . I just need to somehow parlay it into millions!!! Thanks

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  5. Thank God for the Doctor Gemerals of the world. Continuing to send ,y pages and good thoughts..

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    1. Thanks. I think some people are turned off by that take charge approach. . . "MY BODY!" "MY CHOICE". . . but I think we were reeling and needed it.

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  6. Thank you for sharing this part of your family's story...I am just in awe. Thinking of you all...hope you have a great vacation next week...relax and all that good stuff.

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  7. I didn't realize this all had been going on for so long! Holy crap, Jim. If I ever have a big secret, I'm entrusting it to you. You're like the Fort Knox of secrets.

    Thank you for sharing all of this. And I agree with Mom2LittleMiss - when I had to go in for surgery, I read every blog I could find from people who'd gone through the same thing. Someone scared and lost is going to find this somewhere down the road and it's going to help them. That's huge, you know?

    Still sending you guys all the good thoughts. Every single last one of 'em.

    Have an amazing vacation! I'll miss you! Can't wait to hear all about it when you get back!

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    1. Thanks again, Amy. I did honestly envision it as something that a guy like me (or a gal like my wife) could read to take some of the scary out of the whole process, learn a smidge, and feel vindicated by.

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  8. Hugs to you. Hugs to Leslie. Have an amazing vacation :)

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  9. I wanted to comment SO MUCH that I found a way to make Blogger stop hating me.

    First - funny stuff. I've met not one but TWO law school deans who had either the first or last name "Dean." It's funny only the first five or six times. Then it makes you wish s/he'd beg for a different title -- "overlord" even.

    Second, you keep amazing me. I know only a small fraction of what this is like, having had a lumpectomy for a walnut-sized lump that turned out to be benign. But, that scared the holy bejeezus out of me, and I have to think that what Leslie (and you) experienced is magnified by that 1000x over. I'm sure it helped you to write this all down then, and I think it is wonderful that you're willing to share it now, because someone will undoubtedly benefit from what you two learned. You're a rock, dude. And you rock. See what I did there?

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    1. I knew someone named Doctor. We called him Mr. Doctor, but that was in college. If he ever became a doctor? THAT would be awesome.

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  10. Oh my god, the terry robe would make such a difference to me. I mean like a stupidly huge difference. Because it's the thing, when it's that awful paper garment, that says "You're not really a person , just another body, and we could give two shits about your comfort and wellbeing" and then, when it's fluffy and soft and an actual garment, says "hey, we're paying attention to the small things that matter in making you feel cared for, and we don't forget the details."

    I suspect this story is going to help some people with some scary things in the future. Still sending all the healing wishes.

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    1. it is ridiculous how even the tiniest detail can make such a huge difference when you're scared and unsure and you feel like a slab of fucking meat on a table being examined at all angles by teams of butchers.

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  11. Hope your vacation is wonderful!

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  12. I held my breath through this whole chapter without realizing it til I got a little lightheaded reading the comments. Thank you for letting us read your story so we can all root for Team Leslie. As someone who has watched family and friends deal with breast cancer but never understood it like this... it is a gift. :)

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    1. Thanks, Tara! Better to watch it than to live it!

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  13. Finding the right doctor is totally such a big deal. I'm so glad you guys found the right one. I'm still sending all my love to you guys and your family.

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    1. save SOME love for your family. . . thanks, Stimey.

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  14. I learned a lot by this post. I'm sorry you had to learn it all and educate me.

    I hope you actually bought Leslie that robe. And that you didn't buy her any mango perfume. Have a wonderful vacation! I will be waiting for the next chapter.

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    1. Funny story..at the surgeon's office they had a gift bag of pink ribbon cancer stuff that they raffled off when you came into the office...in there was a white terry clothed robe....guess who won...that's right...Leslie!! I guess that was a WOO HOO moment...I save Jim from buying it or stealing it!!

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    2. Dear Leslie, Jim, Girls,

      On all y'all's side. Just let me know if you need anything as life moves forward and carries you along with it. We "bystanders" get a kick out of making any little difference in the face of Big Scary Things...like autism, cancer, and well, there probably isn't much else on that list that we'll have to deal with at this point.

      Enjoy your vacation, get lost on the beach, forget to come back, wander around 'til you find your original towel, (check that it's really yours) space out!

      See you each/both when you get back.

      Lu

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  15. I'm so glad your wife found Doctor General and the fluffy robe. When my Nonny had cancer, she had the best cancer doctor in the area...who had the worst bedside manners in the world. He was just awful. And there is a huge difference between someone already having a plan, and someone with horrible bedside manners.

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    1. there is an idea in my head that there are many many capable/competent doctors in this world. They each graduate with their degrees and serve their similar internships and essentially have similar experiences cutting cancers out of human beings and treating them successfully.

      So if you have a dozen good doctors to choose from with the only difference in technical competency being a stitch here or a stitch there. . . bedside manner becomes ENORMOUS!!! Feeling comfortable. . . feeling safe. . . "feelings" become the determining factor for picking a doctor when all else is equal.

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