When I rode to MGH in Boston last Wednesday with David to see the orthopedic surgeon, I was admitted to the hospital. My leg was pretty swollen and they wanted the swelling to abate some before I had surgery. I was also scheduled to pick up my trial drug and had an appointment with the thoracic social worker, but I had to cancel these appointments. I was given one final dose of my PF-02341066, and then I had to stop. Protocol had actually called for me to be off of the drug for one week prior and one week after surgery, due to uncertainty as to any possible negative side effects in regard to healing. Alice Shaw and I had spent a great deal of time talking abut this in the past few days, as neither one of us felt good about my being off drug for such an extended period. It was my observation that I had noticed no lingering effects from small injuries in the past year, and that I would rather risk slower healing of bones to possible mitigated return of the lung cancer. Alice was able to appeal the protocol and I will actually start the drug again Sunday evening, so I will have been off of it for a total of 96 hours or four consecutive doses.
Getting admitted to the hospital was a process unto itself, as I had an admit order, but no beds were available. By early evening I was a patient on the cardiology wing (that’s where a bed opened up), and found it to be a pleasant floor. It thrummed with activity, the nurses were very attentive, and the patients were a pretty well mannered lot. Of all the losses of privacy, perhaps the most difficult aspect of hospital stay is the noise. The one sound that can potentially drive me around the bend is the constant (and often competing) din of lots of televisions. I rarely watch TV, and I frankly deplore it as background noise. I hit the jackpot this time. My lovely room-mate was quiet and she never turned on her TV. Woohoo! She also was God’s own little pitbull. She took communion daily, but if she felt like the nurses weren’t responding quickly enough to my needs, she was after them. We were together until the morning of my surgery (for which I was also wait listed). Before she said goodbye she grasped my face and kissed me and gave me a bottle of holy water from Lourdes.
I made another friend on our floor–a particularly lovely nurse. It fell to her to give me my sponge bath, and upon seeing my tattoo the first thing she said was “that’s beautiful”. I explained the personal significance of the white circle, and she told me that in her native Brazil many religions are practiced and tolerance urged. The white circle was an image she had encountered before, in African mysticism. And then she held her hand just above the circle, and said “you can feel the power coming from it”.
Surgery on Friday morning was complicated only by the fact that the surgical team was still trying to gather information about my trial drug and in fact was on the phone with Pfizer even as I was prepped. I turned out to be the best source of information, underscoring the importance of patient’s personal experiences. It is yet another reason that clinical trials need to involve humans–(other) mammals are only able to provide empirical data and we add the anecdotal piece.
I awoke from surgery with the clear understanding that the pain I had experienced in the last week was a lot less complicated and easier to control than what I was now facing. In addition to the now freshly fractured bones, I had two large incisions, a plate, and some hardware. Very Frankenstein.
I had been moved to a new wing of the hospital as well. Another quiet room-mate and a view to boot. Five big windows with the Zakim bridge in the background, as well as the Ether Dome (one of the oldest operating theaters in existence where you can still see surgical instruments from an October 16, 1846 demonstration of the analgesic properties of ether), which looks as if it had been plopped down in the midst of all these tall buildings (although it was here first). And for almost two days it was a private room–it doesn’t get much better than that. Two hours ago they managed to wedge another bed in here and my new room-mate was struggling with the TV controls before they even had her settled in. She’s also got a very productive cough. I had a cough like that for a long time too, and I realize that it may be from an underlying condition that is not contagious. However, I am on anxious alert, as I just can’t afford to be complacent when it comes to any threat to my lungs.
Sure enough, two hours later they are doing her admit questions and ask her about her cough (perhaps they could have asked her sooner?). She responds, “I’ve had this for a couple of days, I’ve got a terrible cold”. She is being admitted with a broken leg, but frankly I think she’s heading down the road to pneumonia. I call the nurse over after he’s completed his interview and explain that I really need to be moved, I can’t afford to risk contagion. He doesn’t think there’s anywhere to go and I respond that I would rather sleep any other place, the hall for instance, than in this small room next to this poor woman with a broken leg and a cough.
There was a time in my life when it was difficult for to me to assert myself and be my own advocate, but no longer. You must pay attention and not be complacent when it comes to situations that might compromise your health and well being.
To my great relief the nurses are back in the room within minutes, and they have a solution. They move me, in my hospital bed, with my possessions piled on top of me, down the hall to another room for the night.
I sleep well, and in the morning introduce myself to my new roomie. Ours is going to be a short relationship, as I am to be discharged today. We quickly hit it off, discovering all sorts of people and places in common. Our fledlging bond becomes even closer when I inadvertently use her toothbrush in our shared bathroom. Oy vey. I throw the brush away, confess, apologize and console myself that at least the toothbrush didn’t belong to the woman with the cough. I also decide that someday, when I am Queen of the World, hospital rooms will have not only wet bars but toothbrushes for each patient that are not all the same standard issue blue. It just spreads confusion.
By dinner time I am FREE of the hospital and ensconced in, if not my own bed, a guest bed on the first floor of our own home. For the first 24 hours I have to concentrate on a deadline for a project I had begun before my accident. I hunker down in my hospital funk and recall the days of final exams in school. But as of two hours ago, I am finished (for now) with the project, I have bathed, and I am blogging. Yea!
welcome home! I was relieved to see a new post and read that you have returned home. Healing thoughts are coming your way
Thanks–and you’re a darn good cook! Linnea