Saturday, 9:40 PM
High-Level Journal Summary: Photos of the actual 6 AM Platelet transfusion this morning. Some aspects of these photos completely surprised me, just because they were unexpected.
The critical reasons for this Platelet transfusion are also given, based upon conversation with my hematologist/oncologist Dr. Dipti Patel. Having the proper Platelet count will best ensure that I do not have another bleed like on 1/8/08. This is especially important since having another bleed could eliminate the possibility of future treatments using that vastly promising drug call Avastin.
My overall energy is on the rise. I was dismissed from the hospital from 5/14/08 and did not start regular exercise again until 5/20/08. Now, my walk today was 1.5 hours in length. This is indicative of overall direction as we tackle this cycle 3 issue with such vigor. In short, our team is collectively kicking butt!
Countdowns:
1.) Day 19 of 28 in Cycle 3 of Carboplatin + VP-16 chemotherapy.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 7 days ago. For the second night in a row, I came close to having an SPS. It happened at about midnight last night, but it chased away at the very last moment.
2.) In 2008, I have had 68 SPS's in 145 days. This is an average of 1 SPS every 2.1 days.
Actual Journal: What a long day. I am exhausted. Per my 5/23/08 online journal, my Dad and I were at the Inova Hospital at 5:30 AM today, well in time for the 6 AM transfusion of new Platelets. At that time, I had no idea what this process would be like. Now, I have a solid understanding of how it is done, how things work, etc.
I brought my camera and took a few shots to share this interesting journey. If it is something which is informative for me, perhaps it will be helpful for other patients and caregivers, as well. After all, there is similarity in treatments among us as we deal with brain cancer. With that, some photos from this morning.
Transfusion photos
This chair allows me to recline and rest during the transfusion process, which took about 30 minutes of setup time and an hour of Platelet transfusion. I was able to sleep for a little bit of this period.
I was expecting red-colored blood for Platelet transfusion. This is probably a naive stereotype on my part, but it is what I was thinking. However, look at the Platelet bag that was actually used. Not at all what I was expecting.
The Platelet bag was hung above me and slowly dripped in over time. This is very much the same process as with the IV-based chemotherapy I have had this year.
Why Platelets are important to us
Here are some of the most important notes I was able to gather in my meeting with Dr. Patel on 5/23/08, all having to do with Platelets and their importance in my IV-based chemo treatment. These are centering reminders for me of what was being accomplished today.
1.) Platelets stop me from bleeding. That is why we needed this transfusion. We cannot go into a next round of IV-based chemo without proper Platelet protection.
2.) As a possible future treatment against brain cancer, Avastin cannot be used if I have a bleed in my brain (i.e., like "the bleed" on 1/8/08). That is why we must be so protective about any sort of future bleeding, which means having a solid Platelet count going into any new chemo cycle. We do not want to lose an option like Avastin which may have great future potential.
3.) I have not had any recent bleeds since 1/8/08, right after tapering from Decadron steroids too quickly after my 12/27/07 brain surgery. We learned from that incidence and are being cautious in not repeating this lesson from the past.
Energy improving quickly
Even though it was an early start to the day, my 2.0 hour nap this afternoon allowed a relatively energetic walk this afternoon on a beautiful, sunny day. I walked 1.5 hours, which is the most in this 3rd chemo cycle so far.
I got out of the hospital 10 days ago on 5/14/08, and I could barely walk 20 minutes. That is how wiped out I was from that unexpected experience. Further, I went until 5/20/08 before I was able to restore daily exercise again. (This compares to exercising nearly every single day prior to hospitalization.)
Team sharing their gusto
Bottom line? I was hit hard last week, but we have made a great group effort to understand the situation and do all the proper things that are critical at this point in time.
This does not surprise me at all about our team. I could not give more thanks for having such a comprehensive team, completely dedicated to our common goal. That goal? Winning this battle against brain cancer cells and living as long a life as humanly possible!
