Volunteer of the Year

This past week, I was honored by the Leukemia and Lymphoma Society of Rhode Island. They had their annual volunteer thank you ceremony. Myself and another individual were given the volunteer of the year award. It was a bit of a surreal experience. A fairly large crowd was present at the RI state house. The speakers were up a set of stairs overlooking the audience. The presenters gave long and in depth descriptions about the recipients of the rewards and all of the things they had contributed to the society.

My award was the second from the last. I had brought my family including my two daughters, wife, mother, and and mother-in-law. My girls kept wondering when I would be going up to accept the award. When it was finally my turn, it was a bit of an out-of-body experience to hear Bill Koconis (the executive director of the LLS) read a description about me and why they were giving me this award.

I have been an active fundraiser for the LLS for 5 years now and he noted that our team had raised over $75,000 for the society during that time. In addition, I had participated in their advocacy trip to Washington, DC several years ago and thus was seen as an ambassador for the society. He also mentioned this blog which I found interesting. As I write these posts, I never quite know who reads them.

When I went up to accept the award, I didn't quite realize how big the audience really was until I looked out. I don't mind public speaking, but this felt a little different. I had not prepared anything to say. I had a flashback to the Oscars for a moment. I started talking about how much I valued the society and why I chose to work hard to raise money for this organization.

As I looked out at my family, I saw them all crying. I became emotional myself. It was a touching moment. I also realized that it was one of the only times I had discussed my diagnosis in front of a live audience. My girls did not quite understand why I was crying, nor did I.

I left the event with mixed emotions. Every time I do something for the LLS, it is a reminder of my diagnosis that I am fortunately able to forget easily. Despite this, the organization is such a worthy one, that my own discomfort is worth it to keep them functioning to help find cures for blood cancers and support patients and families affected by these diseases.

In other news, I did receive another PCR test result from Molecular MD in Oregon. The results were again quite good. Although the scores from this lab are not undetectable, they are extremely low. It is quite likely that the same reading at Dana-Farber would have been undetectable due to the sensitivity of the test. Needless to say, I am plugging along.

Light the Night 2010 Final Results

The final tally is in and the team did quite well again. We raised nearly $7500 for the Leukemia and Lymphoma Society's Light the Night Campaign. This was our fifth year raising money for this wonderful charity and we are pleased with the results. The walk took place on a beautiful fall night and we had a great time. I am grateful for all of you who donated money and appreciate the support.

In other news, later that week, I had another PCR test done at Dana-Farber. Fortunately, it came back as undetectable again. I have now been on the lower dose of Gleevec for about 3 months. I have noticed that my eyes are swelling less, and therefore, I am tearing less than before.

I did learn some sad news during the fundraising. Back in 2006, I had written a post called Not Alone. I had written about a friend of mine from internship who had been diagnosed with colon cancer. Deb and I had talked about writing a book together about the psychosocial aspects of cancer.

I had been out of touch with Deb and her husband, Todd, for about a year. I had sent them a donation request and that is when I learned that Deb had passed away last winter. I was pretty devastated. Deb and I had a really good connection as colleagues, but an even stronger one as cancer patients. I was so sorry to hear of her passing and the impact that it will have on her family and friends. As sad as I am, it also reminded me about how lucky I was to be doing as well as I am.

Light the Night 2010 and updates

The annual Light the Night Walk in Providence is quickly approaching. This is the 5th year of our participation and it has been a wonderful experience. The Leukemia and Lymphoma Society is a great organization. It has helped me and many other with blood cancers in incredible ways.

This year's event will be held on  Saturday night, September 25, 2010 at Lippitt Memorial Park in Providence, RI. The opening ceremony starts at 6:30 and the walk begins at 7. It is about a 3 mile course. For those who have not seen it before, it is very powerful. There are about one thousand people walking down Blackstone Boulevard with lit balloons all in an effort to raise money for this great organization.

There are a number of ways to participate. You are welcome to donate to me or any of my team mates. You may go to my site (Light the Night Page). Any donation is appreciated.

If you are interested in walking, you may sign up as a walker on the same site. On the top banner, it reads "Walk with Us". Please feel free to email me with any questions as well.

In terms of other news, my PCR test came back with excellent results again. My number keeps going down. The level was 0.0008. Excellent news even on a lower dose of medication.

The Summer of 2010

It has been a long time since I have written on this blog and many people have been requesting an update. It is not that nothing has been happening, but just that my spring was encompassed by a disastrous flood that ruined my office. Fortunately or unfortunately, I happened to be in Disney World when this happened. I returned to an awful mess and some crisis management to keep the business running. The picture is what happened to our computer equipment when 3 feet of water invade your office.


Soon after this disaster, I headed out west to meet with Dr. Druker for my annual visit. Earlier that same week, he was on the Dr. Oz show. Here is the clip below.



Dr. Druker said that he was receiving calls from all over the world because the show seemed to indicate that Gleevec was a miracle pill for many types of cancer.

Anyway, my visit went smoothly and calmly. I had blood drawn and we talked about longer term plans. Dr Druker wanted me to have a Gleevec Level test conducted because he suspected that I might be on too high a dose of the medication and could likely come down from the 800 mg. In order to do this, I needed another kit that was shipped to me and was sent off to the CML Alliance. Unfortunately, due to a dispute with the FDA, the information from the CML Alliance had to be removed from the web.


After our visit to Portland, we jumped on a plane and headed to the Bay Area to meet up with our friends Angela and Russ. We visited Napa Valley and San Francisco and had a wonderful time.

When I returned home, I had the blood work done. I received a call from Carolyn at OHSU letting me know that my PCR level was still extremely low and only barely detectable based on the ultra sensitive tests that they use at Molecular MD. My Gleevec level also came back as quite high indicating that I needed to come down off the 800 mg to 600 mg.

Interestingly, this posed some logistical issues. First, I would need a new prescription which is usually not a big deal under normal circumstances. Due to the high cost of this medication, there is an extensive pre-certification process that has to occur. Also, the pill comes in 400 mg tablets or 100 mg tablets. That would mean I would break the 400 into 2 or get a bunch of 100 mg tablets. The problem with breaking the 400 mg into 2 is that it is released quicker in your body and may produce some side effects.

I took the plunge last night and took my first 600 mg dose of Gleevec. I will have another PCR test in August to monitor my progress and make sure my numbers don't change.

Dr. Druker also talked about some potentially encouraging research out of Europe. Some people with CML and taking Gleevec have been able to come off the medication and have no return of symptoms. Others have tried the same thing and symptoms did return, but disappeared again once Gleevec was restarted. This might suggest that Gleevec could be curative in nature, but there is not yet enough research to determine this.

The other good news is that my office was fixed and we moved back in. This allows me to breathe a small sign of relief.

Customer Service

So I decided to let Dana-Farber know about my missing PCR test from December. I sent a letter to the head of the Quality Improvement and Patient Safety committee at the hospital. I received an immediate response and apology with indications that further investigations would be under way. The following day, I received a call from another person on the committee apologizing again. Yesterday, I received a letter reporting the findings of their investigation. My blood was drawn in December, sent to the laboratory at Brigham and Women's Hospital, but disappeared from there. Based on my complaint, they are implementing a performance enhancement regarding blood specimen tracking. What is amazing is that the hospital seems to have an extremely updated system. At my last blood draw, the phlebotomist used a wireless machine to scan my ID bracelet and another wireless device to print out the appropriate labels. Despite technology, there is always room for human error.

On another note, I spoke to my doctor today and he reported that my PCR test was still undetectable.

My Letter to Dana-Farber

This is the letter I sent to Dana-Farber following my missing PCR test from December.

Dear Dr. Weingart,

I am not sure if I should be sending this letter to you, so please feel free to pass it on to the appropriate person. I have been a patient at Dana-Farber four 4 years now. I have had an excellent experience being treated for CML. As part of my protocol, I have routine PCR blood tests every 3 months.

I came in yesterday for a checkup with my oncologist and to have a new PCR test completed. I was stunned to find out that my last test, which took place in December, was never completed. I had come in on a Saturday in December to have my blood drawn. Since it is hard for me to come during the week, I often go to the infusion room that is open on the weekend. After the blood was drawn, I did call my oncologist to check on the results. He reported undetectable findings which I was quite pleased about.

When I spoke with my oncologist yesterday at our meeting, I asked for a printout of the labs from December. He could not find any other tests for that date except for  a CBC. Under the PCR test, it said “Pending”. Upon further investigation from the oncologist and his nurse practitioner, the laboratory did not know what happened, but my blood and test results were not processed appropriately.

It is unclear to me who might be at fault for this error. It certainly could have been the nurse who took my blood or potentially the laboratory. Of course, my doctor should also have noticed that the information he provided me was inaccurate as well. Upon speaking to another CML patient who receives treatment at Dana-Farber, she reported that the same thing had happened to her.

I wanted to make someone aware of this issue in case this is a systemic or computer problem. Fortunately for me, my blood work has been excellent so I was not overly worried about my results. I would imagine, however, that if I were newly diagnosed, I would be extremely upset.

I appreciate your time.

Sincerely,

Jon Gershon

These are not a few of my favorite things

I had my 6 month visit to Dana-Farber today. I really dislike (perhaps hate) going up there. I like my doctor, but it is possibly one of the most depressing and crowded places I have been. It is a good thing I am not claustrophobic. Aside from the 2 hour ride to get there, I also learned that my last PCR test was actually not done. I had blood drawn in December and I called two weeks later to find out the results. The doctor told me it was undetectable, but he was reading my test result from September and not December. I am pretty upset about this for several reasons. On a practical level, I was mad because we drove up to the hospital on a Saturday. I waited two hours for a nurse to draw my blood. Apparently, that same nurse also forgot to send my blood for the test. Also, now I have not had a PCR test for 6 months despite the fact that this is supposed to happen every 3 months. There is nothing I can do about it now.

At today's visit, I had my blood drawn again and it was definitely sent for the PCR test today. My wife also asked about an H1N1 test, since I never had one. Thinking this would be a fast and simple process, I agreed to have this done. I was then told to go to the infusion room. I then waited a half hour. When I got in to have the shot, a nurse comes over with the needle. Guess who it was? The same nurse who lost my blood. I did not say anything because I am sure she has seen hundreds of patients since she saw me last.

Anyway, the waiting game begins again. I will have results in a couple of weeks. In May, back to Portland for a more pleasant oncology appointment.

4 Years

I just looked at my watch and noticed that date. It has been 4 years since I was diagnosed with CML. It is sort of amazing to me how little I think of this anymore. I do have to go to Dana-Farber next week. Four years ago, I could only imagine myself as a cancer patient. Now, cancer plays only a minor role in my life play. Thank you Gleevec!

I am grateful that I have had such luck in this fight and that CML has not become my life. I owe a lot to my family and friends who have supported me through this whole process. This diagnosis was probably a lot harder on them than it was on me.

I vividly recall that awful night 4 years ago when I got the call about my white blood count. I had just walked into the house with Chinese food. I never did get to eat that soup.

Undetectable

Yesterday I received my latest PCR test results. Fortunately, they continue to be undetectable or PCRU for those who know CML jargon. What was funny was that I had forgotten to call to get the results until my CML buddy, Wanda, reminded me. Thanks Wanda!

I started thinking that this whole thing has become so normal to me and really an after thought. That is quite different than it was almost 4 years ago where I would dwell on every number or any symptom. I would spend time reading about CML, looking at the message boards, and communicating with others about this topic. Now, it hardly comes up at all. The reality is that I don't really think about it all that much.

The only time it is a reality is when I go to the hospital. This past visit, I went for a routine blood test on a Saturday. The blood lab is not open at Dana-Farber on Saturday so they sent me to the infusion room. I was sitting around with many people who were getting chemotherapy and possibly spending the day there. I really felt out of place. I do have to return in February for a 6-month follow up.

CML has certainly changed over the course of my diagnosis. It has gone from a primary stressor at the beginning, to some background noise every so often. Let's hope it stays that way. Perhaps one day I will be able to say, I used to have CML.