From What We Cannot Hold The Stars Are Made

New York

A dear friend in Ireland emailed me yesterday worried that I had not been posting for so long.

It is true, of course. It has been weeks. Weeks spent trying to discern what was wrong, cajole secretaries to let me talk to a physician to discuss what was wrong, and trying to manage the infection that has been a constant since I returned from SE Asia. 

I hit the wall a few days before Labor Day when a specialist told me he wanted to do surgery as soon as possible to do a biopsy to rule out cancer. Stunned, I did the pre-op lab tests, tried to make arrangements for friends to take me to the hospital on the morning of the scheduled

surgery. The surgeon had not given many details about the rationale for ruling out cancer in this way especially since the infection was still raging with very high bacterial counts when I was cultured. I called my sons, listed as next of kin,  in case something untoward happened.

The following day, I changed my mind about surgery and decided to postpone it, and deal with the infection. I wanted to consult another specialist for a second opinion before I moved forward--an infectious disease expert.  That all took nearly two more weeks to arrange and during that time, I began feeling more and more fatigued.

The meeting with the specialist, Leigh Kennedy, was last Monday. After looking at the five sets of lab tests outlining my bacterial count, she ordered a super drug, Merrem, to be administered every 8 hours for 10 days via IV. So one week ago, a home care nurse threaded an 8 inch Midline catheter  from my elbow to my shoulder through one of the brachial veins, brought me syringes filled with heparin and normal saline, dressing change kits to protect against infection, and lots of alcohol swabs.

Now, seven days later, I am still fatigued as the drug tries to stop the virulent bacterial strain that is so smart that it walls itself off from many incoming antibiotics. There are some other strong antibiotics to try if this fails to kill the strain, but not many according to the lab.

So, my time has been spent setting my alarm so that I can keep to the 6am, 2pm, 10pm schedule of infusion which requires taking the medication out of the fridge two hours prior to administration so that it reaches the right viscosity, then infusing for an hour followed by a a heparin flush so that the line does not clot off which would require re-insertion into the other arm. Add contacting Blue Cross every time something changed, or I needed something in New York instead of Pennsylvania, contacting home care agencies who will transfer care in the two locations, lab work, and this has been a challenging time.

I won't know for another week whether or not the bacteria have succumbed to the powerhouse antibiotic. Uncertainty is never the same as possibility. And the question of cancer will have to be addressed after this problem has been resolved. Then, on to the hip surgery that will probably occur next spring--a labrum tear--the scourge of athletes and ballet dancers.

It's too early for me to make many sage comments about what I've learned. But, like my experience in other periods of crisis and need, I have been surprised and moved by the unsolicited, genuine concern and support of people who don't have any family ties to me who consistently come through for me-- friends who have their own issues and concerns to deal with but who had known about the illness, and found a moment to respond just about the time I had reached another hurdle. Without them and their  support, I don't know what I would do with the angst that accompanies being alone and sick without the benefit of someone listening to the options, helping review the potential for what could go wrong. 

It raised the question for me from several years ago when I decided to do patient advocacy for elderly clients. Who can you trust to listen, then to advocate for/with you when you are alone?  I was amazed at how little energy for decision making was available to me in the thick of it. Being sick really is a battle. All of my nursing skills, all of the patients I have cared for, students I have taught to care for patients, still doesn't translate to the  of trying to decide alone what is best, who is trustworthy, what is the smart path to move me forward.

Finally,  I am reminded that being young, something that I do not particularly want to revisit developmentally, has its physiological merits. Three years ago this November, I ran the New York Marathon. Today, that seems impossible. ( I use the lanyard that I had for my ID at the Javits Center registration, to hold the IV bottle for my infusion. I believe that is what we call irony! )

M.C.