Saturday, December 27, 2008

Nursing

I warn you that this blog entry is going to read like those Johnson and Johnson ads, about the importance of nursing, that always make me cry, but it’s a subject matter truly close to my heart. Cue the sepia toned images and slow piano music:

Nursing is, hands down, the most underappreciated, difficult, precise, and noble profession that I know of. I have encountered so many incredibly kind nurses – some I have interacted with for mere minutes, and some have been with me for a longer part of my journey. Every single one provides essential medical services that require a lot of training and knowledge, and many have gone beyond to provide comfort, calm and patience at critical and difficult moments. Over the past two years, I have had literally hundreds of nurses participate in my treatment. I never learned some of their names, and have forgotten others, and there are some that I’ll remember for the rest of my life. I have been thinking about how deeply and positively I have been impacted by nurses, and thought I’d share a few specific examples:

Days after my initial diagnosis, I had to go in for a second PET/CT scan. Now, since these first two rounds of tests, I have learned what is standard in the world of required Barium consumption. George Washington University, Georgetown University and Northwestern University Hospitals all agree that two 16 oz bottles is quite sufficient for accurate imaging. But at Washington Radiology Associates, I was told I needed to drink three bottles in the waiting room. Now, drinking 48 ounces of anything in one sitting is a bit of a feat, but Banana flavored barium sulfate suspension is another thing entirely. When I finished, I was feeling pretty sick. When I was taken in the back for a blood test, there was another tumbler of it waiting for me, and I don’t know why, but at that moment the fa├žade of emotional stability that I had been faking for a couple of days broke, and I burst into tears. And the nurse standing there waiting to take my blood didn’t recoil, didn’t awkwardly wait it out, didn’t try to patronize me – she threw her arms around me, patted my back, and soothed me by talking about a patient of hers who had Hodgkin’s ten years ago and had recently come in to visit with her two children and how well she was doing. She simply knew exactly what to say to comfort me, and I have thought often of what she said, and how she said it, and how much it meant in that moment.

More recently, when I was about to begin the stem cell collection process, I went in for an initial consultation and for some lab work. I met with a nurse that really rubbed me the wrong way – her manner was harsh, and she made me wait an hour for an appointment I had with her to go over paper work – an appointment that ultimately took less than ten minutes. I wasn’t looking forward to spending up to five days with her the following week. But when I arrived Monday morning, I discovered that a different nurse named Cheryl would be handling my collection. Cheryl was the type of no-nonsense and take charge person that inspires immediate confidence in her patients, and she was a great conversationalist. Over the course of a long two days, I really enjoyed getting to know her. More than anything, having her there to answer my questions and make me feel confident about the process and procedure I was undergoing made me feel much more positive about the experience than I felt when I walked in that first day. My attitude had everything to do with my confidence in the care I was receiving.

Erin, was the assistant to my DC Oncologist when I first transferred from GW, to Georgetown, a few months ago. She made everything so easy, scheduling appointments, dealing with insurance companies, and being so competent and gentle in her handling of my case, that for the first time since my original diagnosis, I felt as though there was safety net in place if I dropped any of the many balls I was juggling. It made the system feel entirely different from GW’s and literally allowed me to sleep better at night.

Similarly, the transplant coordinating nurse, Jenny, at Northwestern inspires the same confidence. She always makes me feel as though I am her number one priority and is organized, clear, and always on top of a process that is wholly new and scary to me. She makes me feel confident about the system in place and Northwestern. Faith in that system gives me an immeasurably good and safe feeling, and is something that I think is critical to my well-being right now.

Sue was a night nurse at Georgetown (meaning she was assigned to check my vitals, administer my chemotherapy, and generally take care of me from about 8 pm to 8 am), who was one of many caring and attentive nurses and wouldn’t have stuck out in my memory if not for the fact that she communicated very well and effectively with my mom. She inspired a trust that allowed my mom to feel that when she left the hospital overnight, I would be well cared for, and that was a wonderful gift.

Reflecting back two years to my treatment at GW, every single one of the nurses was kind, attentive and caring, which actually almost made up for how little attending and caring my doctor did. Almost. But the nursing staff was great, from Marie who always took my vitals and blood in the front lab, and whom I looked forward to seeing and chatting with at every appointment, to Mary, the business manager who reminded me in every way of my friend Sarah’s mom, to the team of petite, blonde nurses who administered chemo whose names all began with K’s – Katie, Kathy, Kirsten. But one nurse made all the difference. Kyra started administering my chemotherapy drugs – each lasting 6 hours – on my second of twelve treatments, and the adoration was immediate and mutual. Kyra was confident, and made me feel like I was in safe, capable hands. She quickly became familiar with my family and my friends. Some mornings, I would actually find myself looking forward to going to the clinic, because with Kyra there, it was as if I was just keeping a social engagement. She made me feel like I was her favorite patient, her most important patient. In a clinic where it’s unfortunately easy to slip through the cracks, she made me feel like I was a priority. My friends loved her - Kyra discussed dansko clogs with Emily, talked sports with Betsy, and talked about medicine with Jill. She always made sure to keep my favorite chair in the infusion room open. She would return my calls straight away when I had questions, and gave me her cell phone number so that I always had an easy way to reach her. She told me about her family, her dogs, her home renovations, and shared stories from her own life and for the first time, I felt as though a medical professional wasn’t approaching me like a mechanic approaches a broken car – she felt comfortable exposing her own humanity to me, and that made me feel like a human. I tried to spread treatments out amongst different friends when my family wasn’t there so no one had to miss too much work, and I think in the end, something like a dozen friends came with me. Nearly all of them made some variation on the comment: “I know this is really inappropriate, but I’m sorta of having fun”. Kyra is why those days were not only bearable, but sometimes sorta fun.

So when those Johnson & Johnson commercials come on, I tend to tear up. Because I have had so many powerful examples of the positive difference that a nurse can make in the life of a patient. And for that I am deeply grateful.

Monday, December 22, 2008

Naomi’s Marathon

Let me begin by wishing those of you celebrating this week, a Happy Hannukah, Merry Christmas, and Happy Kwanzaa.

I wanted to let you all know that my friend Naomi Wolf is running in the New Jersey Marathon on May 3rd, through a program called Team in Training, which raises money for the Leukemia & Lymphoma Society. She is running in honor of both me, and her mother, Betsy, a survivor of non-Hodgkin Lymphoma.

Here’s an excerpt from an email she sent her friends and family that explains a bit more about her efforts and gives information about ways to help her fundraising efforts:

“As the world's largest endurance sports training program, Team in Training has done its part in trying to find a cure for cancer by bringing over 380,000 volunteers together and raising more than $900 million since its creation in 1988.

In order to support this wonderful cause, and to get me across the finish line, I need your help! Please make a donation to help me reach my goal of $2,600 to help advance LLS's mission. All donations are officially due by March 15, 2009. You can make a donation online at my website:
www.tinyurl.com/nwolfmarathon or you can mail cash or check (made out to the Leukemia & Lymphoma Society) to my home address: 205 W 88th Street, Apt 11G, New York, NY 10024. Your donation is 100% tax deductible.”

Thanks to Naomi for taking on this huge challenge, and thanks to those of you who are able to support this important cause through your contributions.

Saturday, December 20, 2008

Warning: These Drugs May Alter Your Ability to Send Coherent Emails

I did my third round of chemotherapy last week, which ran through the weekend, and hit me harder then any of the previous 14 treatments. Fortunately, the worst of it has passed, and I am feeling a lot better.

I finished the three day treatment on Saturday night, slept straight through Sunday and Monday, and only vaguely remember Tuesday. One of the side-effects of a drug in the chemotherapy cocktail I have been given, is disorientation, which typically manifests worse in older adults. I was convinced I had avoided this side-effect altogether, until Thursday, when I sent my friend Debra a card to apologize for missing her birthday last Saturday. As it turns out, I didn’t miss her birthday, I just didn’t remember emailing her. A quick scan of my gmail sent folder revealed that I actually did quite a bit of correspondence on Saturday...and I’d like to take this opportunity to publicly apologize for any content therein.

Just prior to starting chemo, I completed the remaining diagnostic tests and received the results quickly, thanks to the excellent team of doctors, nurses and techs at Northwestern. The scans revealed that chemo has worked very well, and that I am near a complete remission. These are the best test results I could have hoped for, heading into the transplant, as the efficacy of chemo is the best indicator of how successful the transplant will be. I am hoping to start the transplant as soon as possible, though my body has to rebound from this last round of chemo before beginning the process, which may take a couple of weeks. I was really relieved and happy to get these good test results – and happy to be able to share the good news with all of you.

Wednesday, December 10, 2008

Treating Side Effects Appear to Lead to Additional Side Effects

As is often the case with a big day of medical testing, not everything was able to get done exactly as planned. In this particular case, medication I was prescribed to take to offset an allergy to a an injected dye required for one test (it's a shellfish-based dye, and I've been slowly developing an allergy to it over the 12+ times I have had to have it, which I think is related to the fact that for a couple thousand years, my ancestors didn't eat shellfish?). That medication had an unforeseen side effect that made me ineligible to take another test I needed in order to complete the re-staging process. So I have had to wait to take that test until tomorrow.

But after receiving some of the test results, some conclusions could be drawn. The doctor indicated (tentatively) that this round of chemotherapy has been working, though I will need one or two additional cycles of it before proceeding to the transplant. Depending on test results tomorrow, and on the availability of space in the clinic and hospital, I may begin this third round of chemo as soon as tomorrow afternoon, December 11. Thanks for your good luck texts, calls and emails during this round of testing. I'll do my best to update the blog more often and do a better job of keeping everyone in the loop, but I wanted to let you all know about this possible next round of chemo beginning tomorrow in case you don't hear from me for the next week.

Sunday, December 7, 2008

Stem Cell Harvest







The stem cell harvest was completed last week, and was successful. Over the course of about 11 hours hooked up to the machine, I collected 9.37 million stem cells. The high end of my excellent transplant team’s goal was 10 million, so they seemed very pleased with the results, and if they’re happy, I’m happy. The next step is to re-stage the cancer to determine how the two rounds of chemotherapy have worked. That process begins tomorrow, with a CAT scan, and a PET/CT scan. I will see the doctor on Wednesday to get the results of these tests and to determine next steps. My current understanding is that if the news is great (the cancer is in a full remission) then I will begin the transplant immediately. If the scan shows that there has been some success with chemo, but it has not been completely effective, we may proceed with additional rounds of chemotherapy (and there’s a slim chance of more radiation being used). If the cancer isn’t better, or is worse, then we reassess the full plan. Whatever happens, I will post an update sometime Wednesday or Thursday.

In the meanwhile, I have been keeping busy and distracted and enjoying home and the city as much as possible. It’s been snowing a lot here, and I am re-learning how to not drive like a DC resident in the snow (sorry everyone, but you have to admit that DC drivers are wussy about snowy weather!), spending lots of time in the city doing cool stuff (my insider tour of the Harpo studio was a highlight this week! Thanks Katie Baker!) and enjoying lots of out-of-town visitors (a planned visit from Emily and Julie, with surprise visitor, my college roommate Erica!) It is also really quite nice to be able to sleep as much as I need to, rest when I feel like it, and not have the pressure of maintaining too busy a schedule when I feel sick.

In addition to this brief medical update, I've posted the letter I previously mentioned receiving from then-candidate, now president-elect Obama! If you click on it, it will open in a new window, full sized. I can’t wait to see what an administration made up of the people coordinated and talented enough to respond to what I guess one could call campaign constituent needs, is going to do to make change in this country.