On Monday September 20th, 2010 I started on my 4th round of chemotherapy, this time for CLL (Chronic Lymphocytic Leukemia)http://www.leukemia-lymphoma.org/...This diary chronicles the first day of that therapy and hopefully gives you some insights into the great professionals who dedicate their lives to fighting all forms of cancer.
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Dedication
Many of us in the KosAbility Community owe our continued existence on this planet to those dedicated folk in the medical professional who dedicate their lives to the health of their fellows.
This diary is dedicated to everyone at The Ventura County Medical Center Oncology/Infusion Center in Ventura California. Over the past six years I have been poked, prodded, put to sleep, woken up, rolled over, picked up, sat down and generally cared for in every way possible by so many that I would miss so many names I would be accused of deliberately forgetting too many who have helped me. To all have helped bring me this far, a thousand thank yous.
First, a little about the Center: The Blue Room holds 7 padded reclining chairs fitted with IV poles and side tables to hold the drugs and needle paraphernalia. A second room, the Green Room, holds 9 similar chairs.
In addition, 3 oncologists see patients from 8am through 5pm Mon-Fri. With admin and volunteer staff, the center has a staff on any given day of less than 20, far fewer than needed thanks to California's budget cuts.
A Day of Chemo: At 8am, Jesse, my personal helper, a community college student who helps me with shopping, cleaning, laundry and other personal stuff for a few dollars a week. If anybody tries to tell you that young people today don't pull their weight, the haven't met Jesse! So he arrives at 8am, helps me to his car and drives me to the Infusion Center about 10 minutes away.
Upon arrival, Debra the receptionist, who knows me well after 6 years of treatment, logs me in and advises the phlebotomist, the oncologist and the head oncology nurse that I am ready for treatment.
First, Sal, the phlebotomist draws several vials of my blood. He asks, for the first time today, my name and DOB. You should know that after so many IV’s over the years, I am a very "hard stick", in other words, it often takes 6 or 7 "pokes" to gain access to a vein for blood or to insert IV’s (the record is 37 sticks). Sal has some tricks! He almost never needs to stick me more than three times.
Within an hour, the results of the blood test are back and I am in consultation with Dr. S, my Oncologist and an intern. They tell me my white cell count is "very" elevated and the chemo is starting just in time. Today’s drug, Rituxan, is usually well tolerated, but will make me weak. It will take about 3-4 hours via IV. Finally, the long term prognosis with the course I am about to begin is an expectation of 4 more years of life. I point out that the first prognosis I was given by another Doc in July 2004 was for a life expectancy of 6 months, so from my perspective, every day has been a bonus for some years now.
By now it’s 9:30. Consultation over, BP (that’s Blood Pressure not the Oil Company!), temperature and heart rate measured, I am ushered to the Blue Room where a chair is waiting. Roseanne the oncology nurse gives me three Tylenol and a giant Benadryl by mouth to keep me relaxed for the next few hours. Then, wonder of wonders, she finds, and accesses a vein, on the FIRST attempt and the IV is in and ready to go, with a minimum of pain.
Here comes the pharmacist. The nurse and the pharmacist go through a complex rigmarole where the drug is handed off to the nurse and carefully checked out of the pharmacy. For the 4th or 5th time today I am asked my name and DOB and this time my answer is compared to an entry on the drug label. So I am hooked up to a bag full of Rituxan which is slowly being pumped into my system.
Today there are no therapy dogs around, that’s a pity. But my friend Sandor is here. Sandor is in his 80’s, a WWII concentration camp survivor, a man who lost his wife to cancer some years ago, and a volunteer at the center. Sandor brings his harp and plays to us as we captives to our plastic lifelines sit back and enjoy his music. He has a knack for knowing what people need. The yogurt, the orange juice, a nurse, the admin folk always seem to appear when needed; Sandor simply leaves the room and comes back in with the right solution in hand. We have become good friends outside the confines of the center.
After about ¾ of an hour I am feeling cold so I ask Roseanne to open my backpack and get out my quilt (the Comfort Quilt made by Sara R). Well...you should have been here. The staff has never seen anything like it before, they are handing it around to each other, into the office, to the other treatment room. After about 5-10 minutes I have to yell "guys...I’m freezing over here!" Anyway, you should all know how much your thoughtfulness means to me and that the quilt has healing power beyond all the expensive drugs in the world.
At about 2 hours my throat becomes restricted, I'm dizzy and disoriented and suffer a few short heart flutters, so the drug is turned off for about 15 minutes until I regained my equilibrium. This happens once again at about 12:30pm.
At 1:25pm the session is completed. When I look on the side table, there are the orders for the next session on Wednesday 22nd. As usual, Celia, the appointment coordinator, has already set up my next set of appointments, printed them out and left them for me without disturbing me while I was asleep. These people are truly concerned professionals.
By 1:35pm, Jesse is back to pick me up and take me home. We stop by the local pharmacist to pick up a prescription on the way. Just part of the service.
I am indeed weak and tired after getting home and twice more suffer those temporary heart flutters. I sleep most of the afternoon and most of Tuesday.
Positives so far: lower white cell count, pain level reduced, skin clearer
Negatives so far: weakness, tiredness (but these should be temporary)
This course involves Rituxan again Wed and Fri, then Bendamustine (Treandea) the following Mon and Tue, followed by 28 days off, and back on again. See http://news.cancerconnect.com/... for effectiveness of this drug combination
After completion of the first two week course, white cell count is down, I am quite weak, not sleeping well but looking forward to continued treatment. I hope my one black and blue arm stops looking like I've been in a pub brawl some time soon!
In conclusion, if you were one of those kids who couldn’t sit still in class, you’re not going to like chemo.
On the other hand, if you enjoy watching grass grow, chemo is for you!
Hope this answers some questions. If you have more, fire away.
Let me finish by asking your indulgence. First, a poem:
Forced Contemplation
9/29/2010
For the fourth time in my life
My continued existence in this plane
Is to be determined by the slow infusion
Of chemicals
Which
Under normal circumstances
Would be considered
Poison to my system
Under the control
Of caring professionals
Poison applied in correct amounts
To the unwanted invaders of my bloodstream
Until they surrender and retreat
Regrouping for a month
To attack once more
Where we will be waiting
With IV bags and drugs
To send them scurrying
In a never ending round about
Of attack and counter attack
Until at last my body succumbs
Later much later
Thanks to science, care, and
Most of all, love
Now, the song that always brings me to tears, especially this year with the crazies running rampant all over our politics. This is what I'm here for. I fell in love with this tune 40 years ago. If it was good enough for John, it's good enough for me!
Peace
CJ