Yesterday, I took the next step in participating in the “vaccine” study at Hadassah. Before getting the injections, one needs to get a quick dose of chemo that reportedly has no significant negative side effects. The treatment, I was told, is blessedly brief.
Before I recount the day’s excitement, I want to share with you descriptions of some of the amazing people we encountered yesterday, and I don’t mean the nurses who are all angels; I mean some new people.
First, there was the woman who came into the waiting area and set up drinks and snacks for those sitting around. Now, there are organizations that do this sort of thing on a regular basis, and they do a pretty good job, But, as far as we could tell, this woman was acting on her own. She went around to every person in the waiting area and asked what they would like. And she did not take “no” for an answer. Drinks. Chocolate. Crackers. Cookies. And when she was done, she made a general announcement thanking everyone and congratulating them on their strength and courage.
Next, there were the two young women, I’m guessing in their twenties, in the treatment room. One was there for the other, but it soon became clear the escort was also a cancer patient. The two had met through an organization that caters to cancer patients and, it turns out, the escort has been in remission since September. Oh my God, you have never seen such love and encouragement. And talk about tremendous attitude…the kind that resonates with me. Not the, “Why, God, why?” crap. Rather the “in-your-face, I have cancer and I’ll do what I want, thank you very much” approach. In fact, she had a water bottle, that in retrospect I should have photographed for this blog, with an image of a kid urinating on the word “cancer.” I showed her my F-cancer bracelet. She was suitably impressed, and when I told her I had a matching shirt, she recounted that she had special shirts made up for each of her chemo treatment days. (Can’t share them here; this is a family program.) Unfortunately, we couldn’t talk too much, and I am terribly sorry I didn’t get her name or share with her this blog address.
Then, there was a physiotherapist who was visiting the treatment room. Turns out, he saw me when I was in the ICU and loopy beyond comprehension. I don’t remember him, but Tammy does. And, he reported that I was a much more willing participant in his torturous endeavors than the last time he saw me.
Finally, there was an American couple sitting across from me in the treatment room. They had a daughter who had died of pancreatic cancer at the same hospital. They have an apartment in Jerusalem and are visiting for their granddaughter’s Bat Mitzvah. Since the father is in the middle of treatment (gallbladder), he arranged to get treatment here, paying privately for the whole thing. We had an interesting discussion about the Israeli and American health systems. They said people who think treatment here is worse than in the US have got it wrong. It’s not worse; it’s just different. Also, it’s not as “pretty,” as it is in the private American hospitals. The gentleman is a pediatric orthopedist at NYU and has done work here, as well, so one assumes he knows from whence he speaks.
Back to me…
Having been told to show up at at the ungodly hour of about 8:30 am, we arrived pretty much on time. I jumped out of the car to go wait on the check-in line while Tammy parked (a breeze), and didn’t have to wait too long before my number was called.
(For the uninitiated, waiting on line here is a lot like waiting on line in any socialist country – it’s an activity. Just about any office has a number dispenser and a big red LED sign above the desk that clearly announces what number is being served. So, it boggles the mind that some people who have clearly lived here all their lives are surprised when they are yelled at for (a) not taking a number and attempting to receive immediate service or (b) taking a number AND THEN attempting to be served out of turn. I kid you not. I witnessed this yesterday. But, I digress.)
Not waiting too long means 45 minutes. Seriously, that’s not bad when the waiting room is packed. So I saunter up to the desk and the woman takes my info.
“Are you new here?”
“Um no. I’ve been receiving treatment on and off since November 2011.”
“I don’t have you in the computer.”
Now, I didn’t immediately lose my cool because Tammy and I had joked that this relatively simple treatment would end up taking all day. The woman behind the desk looks up at me again.
“Do we have a file on you?”
“You should have at least two,” I replied. (I said that because at some point many months ago, my original file disappeared, so they created a new one.)
The receptionist checks the day’s pile and finds my file, reporting to me that it says I’m new.
“OK. It could be they have me as ‘new’ because I”m starting in a study.”
That took a few more minutes to sort out and, when it was, she asked me if I had my blood test results.
“No one told me I needed to have a blood test done for this treatment.”
“Well, that’s what they prefer.”
Good thing no one was taking my blood pressure. I told the receptionist that I had a test done one week ago and would that suffice. She had no clue, so put me in the queue to have blood drawn to check my blood count. I got on the phone with the study coordinator and asked her if I needed a blood test.
“Why didn’t you tell me?”
“You realize you’re now adding at least three hours to my day here.” (I’d have to wait to get my number called, get the blood drawn, have the test done, have the results reviewed by the oncologist on duty, wait for the meds to be ordered and then delivered, and then wait for there to be room for me in the treatment room.) I suggested to the study coordinator that perhaps my results from last week would suffice. She didn’t know, but said she’d call my oncologist to find out. She gets back to me right away and said last week’s results are fine.
So, I marched back up to the receptionist to tell her, got yelled at my others waiting as they assumed I was cutting the line, and then marched right into the nurse’s room. I told her that the oncologist would accept the numbers and, when I told the nurse the date of the blood test, she said no way. She would be the one responsible if anything happened to me and she could go to jail for a long time. At which point, I put my hand on her arm and said, “But I promise to come visit you.”
She smiled and said I’d need to wait my turn for the blood test and, oh, by the way, things are taking a bit longer this morning since the computers are down and without computers we can’t record blood test results or order meds.
Back outside I went to the waiting room where I paced a bit more and called the study coordinator to tell her the nurse overruled the doctor and that this is definitely going to take way too long, and in the future please make sure to tell study participants EVERYTHING they need to do.
“I’m sorry,” was her reply. At least she didn’t blame me, which is another typical reaction here. (I’m sure I’ve written about this in the past: the national inability to give all the needed information at one time. If you’re dealing with someone good, you can expect you’re getting about 80% of the story. So, I guess you could say that, living here seven years, I’m to blame for not asking the coordinator when we first spoke, to please let me know if there is anything else I need. Although, come to think of it, I’m pretty sure I did. New rule: when in doubt, have a blood test done.)
After some more pacing, Tammy suggested I find out of we can delay chemo and my forthcoming injection. Instead of calling the coordinator back, I drafted an email in English, copying my oncologist and her nurse (Yeah, I’m vindictive, but please don’t waste my time, so if I throw you under the bus perhaps you’ll be more careful in the future – at least with me.) asking such and noting that I already have work-related travel plans that I am not willing to change. (Shout out to my employer: he would not have bat an eyelash if my schedule needed to change. The truth is, my upcoming trip is more for my mental health than anything else. OK, maybe Tammy’s too.) The reply came back that we could push everything off by one week. No can do, I told her. I”ll just spend my day here.
And, shortly after that email exchange, they called me in to draw blood and told me that wait would be 90 minutes “minimum.”
It was now 10:00 am, two hours 45 minutes since first taking a number at reception.
So Tammy and I made our rounds. We strolled about, watched people, helped a couple who seemed lost, played games on our computer. We called and found out that my meds were ordered, but it would take “at least” another two hours for them to be ready for me.
We strolled some more, had lunch, watched more people. Eventually, we got the OK to come in for treatment. And wouldn’t you know it! The study coordinator was right! Treatment didn’t take too long and by about 5:00 pm we were on our way out of the hospital. So, just over eight hours for what was supposed to be a quick in-and-out appointment.
I guess that it was a good thing that my day was spent waiting around the hospital. Otherwise, I likely would not have met the physiotherapist (and been able to thank him) or the two young cancer patients mentioned earlier.
I’m supposed to have injection #1 on Wednesday. I’m confirming with the study coordinator – via email – that all will be in place and there will be no surprises when I come in. She said all is arranged. And I have it in writing.