It took me several days to regain my strength after dancing. I haven’t quite figured out what causes the exhaustion more; the drugs or the disease, probably a combination of both. Either way, whenever I “overdo it” I pay the consequences. Hopefully with time, the punishment will lessen and my strength and stamina will increase.
Today I saw my new doctor at City of Hope. When they say “City” of Hope, they mean it literally. They have a system like no other I have seen. On your first visit, you are told to go to valet parking, in front of the fountain. From that moment on, you are escorted throughout your entire first visit.
First stop is a check-in desk. I was asked for my medical records. Here we go; I don’t HAVE my medical records because I was told that the doctor was going to request and receive them. I was told NOT to bring them. The guy behind the desk just shrugs his shoulders.
Next stop: A small waiting room for registration. I am very early because my appointment was scheduled for 8:00 am and since the traffic in California can be unpredictable and often horrendous, I allowed myself two hours to make the 35.7 mile trip. It figures that I made it here in record time and now had time to wait. I immediately call my doctor in Palm Springs and asked him to fax my medical records to City of Hope. They do so, and they arrive at the guy behind the check-in’s desk and he whisks them off to my new doctor. I am called right on time, into registration. The lady behind the desk asks for all of the typical information; identification, health insurance card and date of birth. She photocopies everything and hands me my very own “City of Hope” ID card; hot of the press. It is your golden ticket into a world that is overrun with cancer patients. I have never seen so many people with cancer in one spot in my entire life. It was hard to believe that I was now one of them!
Next stop: Down the hall, past the “members’ only” check in desk, to the corral of people all waiting for their blood to be drawn. There are probably around 100 people all sitting in chairs and wheelchairs waiting for their blood to be drawn. I look for a chair in a corner far away from everyone. I finally find one, kind of hidden, around a corner. I sit and listened for my name. Fortunately cancer is not contagious because if it was, I would be running out the door! They called me pretty quickly and I found myself in a small room with four other patients and four phlebotomists. There were several other duplicate rooms; all in a row. Mind boggling!
I am immediately face to face to a guy with a clip board. He asks me my name and date of birth and then starts to tell me why he is there. He is there to ask my permission to collect additional blood from me, every time I am there, for research purposes. I agree and ask him if I can review the results of the research since I would be a part of it. He looks at me dumbfounded and says, “I don’t know, no one has ever asked me that before.” Ugh, the City of Confidence and Hope cannot answer a simple question. I sign a gazillion papers and then the blood sucker arrives and asks me my date of birth; she then draws 12 vials of blood. I have learned over the years to ask for a butterfly needle, that way when they change the tubes they aren’t wiggling the needle in your arm around. The needle stays in place and they change the collection tubes at the end of a tube attached to the needle in your arm. As a bonus, the needles are smaller, too.
I have never seen so many people; all in different stages of cancer and treatment have their blood drawn at the same time in the same place. This truly is a city; a city that revolves around treating cancer; giving hope to all that are living with it.
Next stop is a quick visit to a man in a teeny, tiny office. He asks me my name and date of birth, starting to see a pattern here! He begins to ask my about my medical history and family. It takes me a minute or two before I figure out what he is doing. I ask him if he is the head of the blood donor registry and he says yes. I ask him if my medical records indicate that I am scheduled for a bone marrow transplant and he says, “I don’t know.” Great, another vote for confidence here!
I haven’t been told that I am supposed to be on that list, so I thought that it was better to see my doctor first. He agreed, so I was ushered to yet another waiting room down another very long corridor. This time I look around and realize that all of the people around me have some type of leukemia. There are people everywhere; young and old, people wearing masks, people walking, people slumped over in their chairs, people being pushed in wheelchairs, people with hair and people without. I sit down, already exhausted; reality starting to really sink in. I am one of these patients; I have cancer, it is leukemia. Weird, very, very weird!
Eventually they call my name and I am again escorted down another very long hall. They weigh me, measure me, take my temp and blood pressure and tell me the doctor will be in “soon.” First to arrive on the scene is another man with a clipboard. He wants to sign me up for a different study; would I be willing to become a participant? I figure that they can use all of the rats that they can find and say “sure.” He agrees to send me reports via email when they are available.
Another tap on the door and my doctor comes in. She has an accent; I think she is Russian, and she asks me, “How are you doing?” and “What is your date of birth?” I reply, “I am doing great except for the fact that I have leukemia” and “I was still born on May 2, 1959.” She laughs and we begin to talk. I ask her a ton of questions, most importantly the one about my medication and the dose. She agrees that I should be on less than 140 mg of Sprycel. She wants me to take 100 mg per day, although she doesn’t tell me why.
Currently Dasatinib (Sprycel) is being mailed to me monthly through Destination Access. She must fill out a form with the new prescription on it before I can get the 100 mg tablets. I tell her that I am going to take 70 mg tablets, instead of 140 mg until I receive the 100 mg tablets in the mail. She isn’t thrilled, but agreed. She says that we will re-check my blood work in one week and see where it is. I am thrilled to be taking half the dosage and am curious to see what it does to my blood as well as my energy level the way I feel over all.
As it was, after only 10 days of being on 140 mg of Sprycel, my white blood count was down to 4,300 (near the bottom of normal range), my red count was 3,480 (just below normal range) and my platelets are low ate 11,300. I still keep thinking that the dose is too high and keep asking why it is what it is. I know that having my white cells in the normal range is great, and a far cry from where they were, but what happens when they are too low? Shouldn’t I be making some new, “good” white cells? Is the medication preventing me from making any white or red cells or platelets at all? I guess that next week we shall see what happens after being on 70 mg of Sprycel verses 140 mg.
She examines me, says that I look pretty good; she tells me to have my blood tested weekly and to make an appointment to see her again in one month. I ask whether or not I was supposed to register at the bone marrow registry and she looked confused. I took that as a “No.” Patient number who knows what: Check! I feel a bit better at having my medication dosage dropped and my blood work mostly in normal range, but I still feel as though I do not know what the plan is, or the path that we are going to be taking to get there. Once again, I feel as though I am one of the little inhabitants in this great big City of Hope universe. Check the vitals, check the labs and send them on their way. Maybe next month will be better. Conclusion: Leukemia Sucks!
Thanks for this blog, Michele. I'd heard alot about COH but never in such detail. I'll be looking for your next report to see how the drop in your medication dosage affects your energy level and your blood. You're such a trooper with a beautiful spirit!ReplyDelete
I , too, am eager to see how it goes with dropping the dosage in half... I - couldn't tell - did you like City of Hope? For some reason, I "expected" it to be a very "one on one" experience, it does not sound like it was, well, I mean the "in mass" blood draws (the butterfly IS a great idea), I guess I had it pictured as a "pleasant" atmosphere where everyone is "upbeat"... Like the "commercials" for Cancer Treatment Centers of America. It sounds like you got a long well with your Dr., (when you finally got to see her), but - in the next month, before you see her again, "what" do you do if an issue arises? See your Dr. in Palm Springs, or call City of Hope? Would you recommend City of Hope, or should I hold off on that question for a few months, when you have their routine down pat? Did she ever answer about a BMT? Is that wait and see? YOU are more patient than I, I probably would have "barraged" the Dr. with too many questions! You ARE a trooper, I admire you dancing through this... So much love! Julia XOReplyDelete
I continue to keep up with your blog and you're doing great! Did your doctor confirm which phase your CML is in? Chronic Phase? I know that there were conflicting reports based on one of your past blog posts. And I wonder why they chose Sprycel as the first line of treatment instead of Gleevec (which is what I was started on 1 month ago) or Tasigna? Also, I am a regular runner and I'm feeling the lower energy level like you - that is very common, especially when the red count is below normal (which mine is too). Keep on dancing, because the best thing you can do to raise that red count is to keep exercising!
Your blog exhibits more positive vibes than you know - I look forward to following your progress!
Wow, so many questions I think I shall answer them in a post! Thanks Dan, Julia and Rhonda, supporting me and my blog are priceless!ReplyDelete