Wednesday, July 20, 2011

Not a Good Day Today, + Real Estate Discussion (off topic)

Wednesdays are the day for radiation and chemotherapy. Radiation Oncology and Dr. Flam are in the same complex, owned by St Agnes Hospital. The Oncology group rents space and is an independent entity while Radiation Oncology is owned and run by St. Agnes. Surprisingly, perhaps, the Oncology practice is much less efficient from the patient's point of view.
After my radiation treatment, I arrive for my chemo just after 9:00 AM. the waiting room and the adjacent corridor are filled with patients. I sign in and find a rare empty chair. The folks in the waiting room can talk of nothing except to express their unhappiness about the long wait. It made me feel guilty, because when I worked at a place called "La Clinique Medicale Des Groupes" in Montreal, in an average morning, a total of 25 fluoroscopic examinations were scheduled, with the last usually completed at 1:00 PM, and the latest appointment was 8:30 AM. 


At 10:45, they finally call me to the lab, where they weigh me and send me back to the waiting room, because my blood draw is to be from my port. The blood draw and port access was done about 11 AM. I finally get to see Dr. Flam around 11:15. I am told he has 90 patients on the schedule for today.
My lab results are discouraging. the Hemoglobin is stable at 10.9, but my white count has dropped to 3380. My platelet count is not bad at 129,000.
Because of this, I will need shots of  Leukine. This is given subcutaneously, for 5 days, after oral Tylenol, 325 mg tabletsx2, and Claritin.  Potential side effects are allergic or flu-like reactions, hence the Claritin. and musculoskeletal pain, hence the Tylenol.
There are two areas where the chemo is given. One has about 16 chairs and two rooms with a nursing station between them. It is very busy and noisy, without internet access, and without windows. The second, called "The Clinic" is bright, relatively quiet, and has wireless internet. I ask to go to the clinic, and this is agreed to. However, when I get there, I am sent back because I reported a "Reaction" to the Taxotere last week. The reaction I reported was slight flushing and warmth around my ears. I return to the nursing station just after 11:30, but they have no empty chairs to give me chemo. I am seated at a bench to await an empty chemo chair. By this time, I am uncomfortable, getting hungry, and needing to use the bathroom. I get up and inform the nurses to call me on my cell phone when they have a space for me and that I am going home. We finally agree that I can go home and return around 1 PM.
I go home and have some lunch, and fall asleep for a few minutes. Judy goes to the Pharmacy and gets the Tylenol and Claritin. She also learns that my insurance will not cover the refill on Carafate, and they want $50 for a small bottle which, taken as directed, will last 1 week.
I return for my chemo and injection. I end up home about 3:00 PM.
It is now after 5 PM. I am having some pain in my lower chest and back. I presume this is from the Leukine and not from my esophagus, but I will be very nervous if the pain gets worse. I am also feeling mild nausea. I may need to self-medicate for that.
I have said that when you go to see Dr. Flam, you must park your "Type A" personality at the door and go with the flow. Today, I could not do that. I complained to the nurse, and that's how I learned that he had 90 patients scheduled for today. I complained to Tom Hackett. an associate of Dr. Flam, who looked in on me today, and I complained to Dr. Flam. It was not all useless venting. I learned that they can see me at 7:30 AM, get my labs done, and start the chemo, and then get me to my Radiation treatment with the chemo running. If I wasn't so "Type A", I would never have learned about this.
Next Wednesday, I will be there at 7:30.
Why would Blue Cross deny payment for Carafate? Do they think it would be cheaper than treating me for esophageal perforation? I will try to contact them tomorrow to find the answer to this question.
I am wondering about the plan to have chemo with radiation to enhance the effect of radiation. Is it worth it? Is it going to be any different than if I had radiation alone? If Dr. Nghiem had not endorsed this plan, I think I would quit the chemo. I will talk about this with Dr. John tomorrow morning.


Real Estate Discussion (Off Topic)
We are hoping to move from our large 2 story home into a smaller house on one level with no pool. We have found 2 different homes which were suitable and made offers at what we thought were reasonable amounts. Surprisingly, other buyers came in at higher offers and we did not get the properties. There is an interesting trend in housing here. I called it a "Squeeze". Smaller homes are selling rapidly and values are going up. Larger homes are not selling and values are going down. For those trying to downsize, this is not a good trend. Perhaps the reason is the fear of rising interest rates, either from the stalemate on the government debt ceiling, of from the government printing money causing inflation.

6 comments:

  1. Dear Dave,

    So sorry you had to go through what you did today. Welcome to the world of cancer treatment. I do have to say that our clinic visits over the last three years have been long, but the care and cure for my Scott more than made up for it. Yes there are blood draws ... some patients throw a kink in the schedules because their condition is a lot worse than yours. FYI - Your white count is awesome and your platelets are better than Scott's. I I know you are a doctor and you may feel like you have special privileges, but when another doctor is taking care of you. you need to leave your ego at the door. Please think about what those other 90 patients were going through. If you came to visit our pediatric cancer clinic and watch a one year old learn to walk while tethered to an IV pole getting chemo ... it might hit home, especially since you have grandchildren.

    Your latest post was really offending, but we pray that this new treatment will cure your MCC. I am speechless.

    Diane Hammond

    caringbridge: scotthammond

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  2. I am sorry you viewed this post as offending. It was not intended as such and I am not demanding treatment other than what should be common courtesy to all patients. Why give an appointment for 9:00 AM if the patient will not be seen before 11:00 AM.
    As I wrote in my blog, I was responsible for this sort of mistreatment in the past for which I expressed a feeling of guilt.
    Thanks for your encouragement about my labs.
    Dave

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  3. Hello,
    I have a question about your blog. Please email me at davdhaas@gmail.com
    Thanks,
    David

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  4. Dave I've been following your blog for awhile now. I also have Merkel Cell. My heart goes out to you & all that you've been going through. My fingers & toes are crossed for the new treatment.
    I understand about the waiting. It's not that we're ungrateful for the care we receive, it's just that it would be nice if you're waiting for over a half hour past your appt. time then they should at least give you some idea when they will be able to see you. I've spent alot of hours past my outpatient surgery lately.
    I hope that your day today was better.
    Ellen

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  5. Dear Dave,
    I believe the doctors are doing the best they can, and I give them credit. However, hours of waiting in a crowded room is extremely frustrating, and, if it is difficult to be patient under normal circumstances, it is amazingly difficult when one is facing the pain, uncertainty, huge losses, grief, or anxiety that is associated with life-threatening cancer.

    Mu understanding is that you are trying to share your journey regarding the fight against merkel cell cancer, and your feelings are a legitimate part of that experience. You are entitled to your feelings- which I can tell you, as a clinical psychologist- are absolutely NORMAL. They do not indicate that you are some kind of an ingrate.They do not indicate that you expect special privileges. We cancer patients need support, not accusations and guilt trips, and I think you are doing an amazing job.
    Andrea Schwartz

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  6. Doc Dave,
    I was very surprised by Diane's comments to you. When I read your blog I felt sympathy for ALL of the people who are waiting for hours to be seen and did not feel for a second that you were expected special privileges because you are a doctor yourself. If anything now that you are a patient and have experienced what you have I think that you will be able to enlighten any co-workers that you are still in contact with to help them understand what it is like on the other side and can possibly help others in the future by giving them the knowledge and awareness that you have now. Please continue to share your experiences as they really happen and don't sugar coat anything from what you really feel because someone interprets it in a way that is not your reality. Everyones pain and suffering is important and being older doesn't mean that your suffering is less than a childs. Seeing children suffer is a horrible thing but so isn't seeing an older or elderly patient who is also frightened and scared. EVERYONE matters. Take care Dave. You are in my thoughts and prayers. Maybe Diane was just having a bad day.
    Carol V.

    ReplyDelete