Slow, Low Days for Bonnie

This is Daniel posting for Bonnie. 

These are the "slow, low days" for Bonnie. 

From a biological perspective:  Bonnie is running a fever of about 101.5  She has hives-like rashes on most of her skin.  Affected areas semi-heal in about one week after they break out, but they are replaced with fresh outbreaks on other parts of her body.  I think less than 20 percent of her skin has not yet been afflicted with livid, red, itchy rashes.  Bonnie requests and gets anti-itch medications but they are not particularly effective.  She wears socks on her hands at night so she does not scratch herself in her sleep.  She sleeps more than normal and is not up and walking the halls, and making herself green tea.

The good news, biologically, is that they removed her Hickman line which has been infected and causing a hot, red 6”x12” area on her chest for the last 16 days. 

The downside of removing the Hickman line is that Bonnie only has 1 line into her body now, entering through the back of her hand.  It takes longer for them to administer intravenous meds, and she has to hold her hand still while the pump works or it sets off an alarm claiming that there is a "patient side" blockage.  Wait til you hear about the real "patient side blockage" in a minute.   Anyway with the Hickman line removed, we have one less, obvious source of infection, which is wise as Bonnie’s white blood counts are currently ZERO. 

While these are slow, low days, we are talking about Bonnie Johnson;  On her slow low days she is seeing one or more of her teams of doctors and nurses and managing her medications a dozen times a day.  She is studying and taking communion and entertaining guests and joking about her condition and making faces.

Since Bonnie can not now focus to read, yesterday she listened to an entire, rather long book on tape: "Walking Through the Old Testament"  Apparently the narrator reads from the 5 books of Moses - interspersing an archeologist account of walking through the exact geographical areas in which the "action" takes place.  Do you find it as funny as I do that Bonnie would take on the Old Testament as a "light listening" on one of her low days? 

Today Bonnie is working on her last paper for her correspondence course for EDS, "Life as Pilgrimage".  She will post it to make the course deadline on time of course. She also printed up an IRS extension form for her doctor last week because she learned that her attending Doc had not yet filed for his IRS extension.  Doesn't everyone come to the hospital equipt to search for IRS forms, download and think to print them for their doctors?

Last night, Bonnie spoke on the phone with her Grandson Zachary.  Zac wanted to know if his Grandbee was STILL in the hospital and how she is feeling, and how much LONGER is she going to be there?  Zac was quiet as he thought about Bonnie's answers, and then consoled her that "7 days more is not TOO long". 

It will be more like 14 days, but Bonnie was seeking to manage Zac’s emotions, just as Zachary moved to manage his Grandbee’s emotions: what a pair.  Look at the human-ness we acquire in our first 4.5 years on earth. 

With the preliminaries taken care of, Zac regaled Bons with his account of playing organized baseball (T-Ball) complete with official uniforms and real baseball SOCKS Grandbee!! and a discussion of "who was on first".  He told her of hitting several home runs and not getting "outted even once": he ran real fast!  Then he negotiated when he could next see his Grandbee.  What a blessing they are to each other. 

Yesterday Susan brought Bonnie communion, and Bonnie entertained her husband twice.

Another day I may post the blow by blow of how Bonnie caught the doctors prescribing and administering a new anti-biotic that could have stopped her kidney function, again.  It is nearly day 20 again.  This time Bonnie resolutely refused a second dose, creating a quiet flap on the floor. Bonnie calmly orchestrated calls through Dana Farber Cancer Institute to her most senior doctor, who was out of town. She cleverly got the entire "parliament of birds" managing her medications to all get on the same page. 

The most senior doctor returned Bonnie's call to Bonnie's cellphone during the middle of the intern's sermon to Bonnie on the virtues and necessity of this prescription.  The intern could not answer specifically if there was any evidence of an e-coli or similar infection for which it was prescribed nor could she assert how the doctors would know if the anti-biotic was putting Bonnie's kidneys into acute renal failure before it was too late.  But she was resolute that Bonnie should be following 'doctors orders' anyway. 

Meanwhile the senior most doctor agreed with Bonnie's Rx 12 seconds into their telephone conversation.  They act like old bridge partners.  He promised to call the attending oncology physician to cancel the prescription for this latest anti-biotic immediately.  The intern was winding up her pitch.  She described how Bonnie could get sepsis that very night and lose brain function and therefore they would give her this drug later tonight anyway, without her permisson.  Bonnie quietly  informed the intern that the senior-most doctor had canceled the Rx.  Exit, one red-faced white coat.   

We have a hard-learned, humorous understanding of what constitutes a medical specialist and an intern.  'A specialist is a physician who will do anything to make absolutely certain that you do not die of the disease HE is treating you for'.   ‘An intern is a young doctor who will insist that you follow the specialists' Rx, as if THEIR career depends upon your compliance’.   I think every doctor and intern should be given at least one round of chemotherapy before they can practice medicine. 

So on this "slow, low day" Bonnie proved more attentive to medical details than her "specialists", more effective at convening the right doctors to recheck her Rx than the intern, and Bonnie accomplished more in her studies than I did on my best day in college.   

Spiritually, Bonnie is deep into her St. Ignatius Exercises and has quiet, deep pools for eyes that gaze out calmly, though she has dark circles under her eyes and she is very tired.  Bonnie manages her up time and her down time so she is alert when it serves her.  And Bonnie remains ever grateful for the gift of life and the learning path she is on, with her disease as a major feature of that path.  One step after another Bonnie says. 

What an amazing human being.  Indeed, what an amazing Spirit your Bonnie is. /D

Comments

[Leslie]

Bonnie,

I've been reading about your incredible journey, and apologize for being so out of touch. I just got back from 3 weeks in Cameroon, and My personal PC with all of my eMail addresses and websites crashed soon after I got there. Thanks to your blog I have some idea of the hroic journey you've been on.

You've been in my thoughts and prayers, and I hope to connect by phone soon.

Love,

Leslie

[Joe Duggan]

Bonnie and Daniel,

I have been following your story through your wonderful Blog. We often think of you. On Monday night at the Eucharist, there was a pix on the altar for you; so that one of your friends could bring you Holy Communion. I feel like you both have brought us Holy Communion through your blog and by the visible presence of a pix on the Altar. Please know that we miss seeing you on the road and at the EDS liturgies. I cherish your spirit and humor. Joe and Stefani