Dave sent me the journal he kept throughout the chemo process and told me to post as I see fit. I read the whole thing and there is good information in there for others who are just starting the process. There will be several posts, but I've decided to start with the last entry and then back up to the beginning.
August 14, 2012
I guess, just to put a bow on things, I will write in this journal today. Yesterday would have been the day I would normally expect to go for chemo at the doctor’s office, but we just had an appointment and my PET scan showed all clear for now.
I read the first couple of pages of this journal before coming here to type the final entry and, amazing as it is, even reading the words I typed while receiving the chemo treatment brings a twinge of nausea to my stomach. So to heck with me reading this. Hope you, whomever you may be, enjoy.
Now that we have his blessing and get a general feel for how over the whole situation he is, here is the first entry. It's a long one.
April 2, 2012
So, here I am at the first day of chemotherapy. I am sitting in a beige colored reclining chair with my feet up and a paper pillow behind my head. My neck hurts because I cannot find the proper fold to make the pillow comfortable but other than that I feel pretty good. In fact, the pain and fatigue in my neck is my primary source of discomfort, much more intolerable than the healing incisions from my recent two surgeries.
There are two bags of fluids hanging beside my chair and fluid is dripping into my IV and into the port in my chest. The nurse said these initial fluids are the pre-treatment medications given in attempt to prevent any sickness from the actual medications. I have not actually taken any medicine yet, but I will by the end of the day. They say I will be here between five and six hours today receiving this treatment. I am fully equipped with my laptop, iPod, book, sunflower seeds, mints and phone to attempt to combat the looming which I know awaits. It is 11:20 and I have been connected for less than an hour though I have been at the clinic since 8:30. It appears I will spend the entire work day with the nurses and staff here at the center.
I met with the doctor this morning and he was very comforting and reassuring. This was my first contact with him since my initial appointment and my first opportunity to discuss the results of my PET scan with him. The nurse called ten days ago and told me that I have a minimal amount of cancer remaining in my body, but she could not answer any specific questions about the meaning of “minimal amount”. I was excited to come to the doctor today to obtain a more precise definition of this term even though I was nervous about taking the chemotherapy.
We waited in the room for the doctor for about half an hour and I was opening the door to go to the bathroom just as he was coming in. He left my chart on the table and went to see another patient, giving me the opportunity to review my records while waiting on him to come back. When I started looking at my chart, Amanda jumped to her feet, excited to take a peek. We could overhear all of the activity in the hallway and Amanda quickly sat back down several times when she heard footsteps approaching our room, leaving me standing alone with my open medical chart.
When the doctor finally came back in, I went through my list of questions:
“What do I expect from chemotherapy?”
“What physical restrictions will I have after treatment?”
“What does a minimal amount of cancer mean?”
The doctor went through the anticipated side effects of chemo with me and then went over all of the precautionary medications they administer in attempt to prevent those side effects. He also indicated that I have “garden variety” (a term actually listed in my medical chart) diffuse large B cell cancer and that my treatment regimen will consist of six sessions of R-CHOP chemotherapy.
Regarding physical activity, he indicated that I could work and participate in light exercise. He recommended that I not work out but told me that I could play golf. He went on to recommend I read a particular book to improve my golf swing and gave me three research based tips about golf he had recently read in the Wall Street Journal. After five minutes or so discussing golf, he returned to the business of discussing cancer and told me (after reviewing the reading of the PET scan that I had already thoroughly reviewed without understanding a bit of it) that I have no significant traceable cancer in my body. I asked the doc what stage of cancer I have and he kind of beat around the bush a little but told me that I am probably a 1E or maybe a 2. He then reported that with my particular brand of “garden variety” cancer, treatment of Stages 1, 2 and 3 is virtually the same and Stage 4 is really what you want to avoid. Perhaps that is the perspective from the medical professional, but I was elated and relieved to hear the magic words “Stage 1” come from the doc’s mouth.
After we met with the doctor, I went to the “party room”, a room with nurses, supplies and a few chairs to wait on my recliner. There are at least twenty recliners in this place and they were all full. I had no idea there were so many people receiving cancer treatment. A nurse came into the party room in a few minutes and did my “teaching”, going over what side effects to expect from the medications, the remedy for each effect and the situations necessitating a call to the office.
In a few minutes, a recliner opened up and I was escorted to it and my port was hooked into the IV bags. After about an hour, a nurse came over to my chair with a large syringe filled with red colored liquid. She was wearing latex gloves and had a gown covering her clothes, so I knew that the real chemo was about to begin. All of the prior three hours had just been prep work for this moment.
The name of the red medicine is Adriamycin and the nurse said she wore the gloves and gown because it would cause a chemical burn if it leaked onto her skin. “And you’re putting this inside of me?” I asked. “Yep. It burns up the cancer.” How comforting a thought that something which burns the skin is being shot inside of me though the IV line connected to the plastic port implanted in the right side of my chest. But the red stuff didn’t really bother me. It went in easy and I didn’t feel a thing.
Next was a much smaller syringe containing a clear liquid called Vincristine, then a new bag of clear liquid to drip Cytoxan into my line for 45 minutes. After the Cytoxan was connected, the nurse brought Benadryl and Tylenol to take by mouth and get ready for the next stage. The nurse told me the Cytoxan might make my nose burn and it did just a little, a feeling like when you have been cleaning the bathroom with the door closed and inhale too much Tilex or Clorox. Nothing unbearable.
At 12:30, the Cytoxan was finished and the nurse connected me to a large bag of clear fluid called Rituxan. This medicine is the “R” of R-CHOP and the initial treatment takes four hours. I think the Benadryl and Tylenol was to prepare me for the Rituxan. The nurses have told me that this medicine may make me have chills and that if I do have chills, they will likely occur at about the one hour mark. I am only fifteen minutes in, but so far, I don’t have anything extremely unusual going on. My legs seem a little cold, but I think I may be feeling that just because I am expecting a chill. We shall see.
It is now 1:40 and I have finished lunch and have had time to get acclimated to the Rituxan. My hands and feet feel cold. I touched my hands to my face and my face felt ten degrees warmer. The nurse said my hands felt fine, not cold. Another nurse just came by and I was about to drift to sleep mid-sentence. She said she was going to bump my dosage up a little and asked how I felt. I told her that my hands are cold and I just got dizzy. She stopped the machine. Looks like I might be here until after 5.
I went to the bathroom a little while ago and had the harrowing yet somewhat predictable experience of producing urine with the color of orange Gatorade. This was not at all surprising considering the chemical red drug the nurse put in me this morning. The nurse told me this is normal during chemotherapy.
Now it is 3:30 and lots of folks have already left the hospital after receiving their treatments. I am stuck here getting this Rituxan and the bag looks to still be about half full. I never dreamed that my 8:30 appointment would last the entire day. Hopefully, the future treatments will not require me to spend the whole day at the doctor’s office.
R - Rituxan - 4 hour, clear drip
C – Cytoxan (Cyclophosphamide) – Clear drip
H – Doxorubicin Hydrochloride – (Adriamycin) - Red push
O – Oncovin (Vincristine) - Clear push
P – Prednisone – 4 tablets for four days following chemo administration
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