As many of you know I have been on a new trial through the breast cancer team at UCSF over the last six weeks. The phase I trial has been targeted at attacking my HER2 mutation with three drugs and with one general chemotherapy to kill everything else in case the targeted ones do not work. I get three of them infused via IV once a week and one chemo I take in pill form every day.
I have previously mentioned my CEA Protein Marker scores which is one data point in terms of how my tumor is doing. Over the last few weeks my CEA marker has gotten quite high, and it made me and the doctors curious about what my scan was going to look like on 6.28.16. The CEA is currently at 336 after hitting a high of 475 two weeks ago.
The scan results came back very positive, meaning that my cancer (tumor) is decreasing in size--or in my case the “poorly differentiated” cloudy mess in my lungs has thinned out and appears to be on a significant decline. This is amazing news and something we are all very happy and excited about. Basically this means the targeted drugs are working and we are making great progress in the first six weeks. It does not explain why the CEA marker is so high but the scan is more important than the CEA marker…so we will take the results we have gotten!
I will stay on the current treatment plan for at least another six weeks and then we will take another CT Scan and further assess.
I have been feeling better in terms of my lungs and breathing, and the results obviously back up how I am feeling. The challenging part of this trial are the side effects of these various chemo’s. As I had previously mentioned, the biggest side effect is diarrhea and the inability to manage it. When you are putting these drugs into your body they have numerous effects and unfortunately this is one of them. This particular cocktail does not let food and your normal digestion process operate as it was built.
I am trying to figure this out with pills, more pills, eating, drinking, and positive thinking. There is one other person on this trial so far and he is two months ahead of me and he has faced the same challenges and is still searching for some answers. They told me he is using a tincture of Opium to help control it along with many other things. I am not ready to go there, but we shall see how things evolve. So for now, I am getting more aggressive with the pills (I really don’t like taking pills so this is a tough one for me)…I just want my body to fix itself…which has always been my situation…but I am learning with these drugs you have to fight the fight with weapons that match up to the enemy!
One funny story, if you keep this formula in mind: time + tragedy = humor. When this first started a few weeks back I was having some challenges, so I went to take one of the pills that will block up your system (Imodium). I was surprised several hours later when the situation was even worse. When I went back and looked at the pills, I had mistakenly taken the pill for constipation…so I just added fuel to the fire without even knowing it! I will spare you all the details but I did find the situation fraught with humor and enjoyed getting some good laughter out of it!
During my latest scan, in addition to the great news, they found some cancer in my back. The official term is L2 vertebral body sclerotic lesion. Basically on my L2 vertebrae. Yesterday I received a shot to strengthen my bones. I guess this is typical with cancer…some of the cancer gets in the blood stream and then gets carried around the body to various spots. I am told the bone strengthener should help mitigate any risks and I will be doing some more research on this topic in the coming weeks.
As I have mentioned this cancer journey is like whack a mole! You make progress in one area and then boom…a new surprise is around the corner. Staying flexible is key, and knowing that life will bring you new and interesting surprises every day is part of what makes life exciting and not boring.
I am guessing that for most of you, there is very little left that could surprise you. The human condition is such that we/you just can’t predict who would be a good political leader, what a great neighbor will do, what your brothers or sisters in another country might do to you, or how the financial markets will react in any given situation. I have always said that consistency is one of the greatest qualities - the ability to have faith in something/someone in terms of the results that they will produce based upon past experience.
As part of this clinical trial I am quickly learning that in the trial phase of things consistency is something they are trying to figure out - how to treat the disease and provide an experience for the patient that is consistently manageable and thus could be taken to a broader audience. So the experiment will continue and hopefully we will learn how to make the result and process both work together for a great outcome.
As I continue on the path forward, the mind is something I continue to wonder about. What is the power of the mind and how much do we control in terms of experiencing joy and pain? There are many stories of people overcoming great pain because they believed in the outcome of what they were doing such that it allowed them to carry on against all odds. When faced with physical challenges, the mind can carry us forward in such a way that the challenges are minimal and easier to deal with.
This whole topic of the “why within” that I wrote about a few weeks back again pops into my mind as I play out the future. I have been amazed with people that always were able to make it on a vacation and yet had trouble at times getting to work. Were they sick at those times or did they convince themselves they were sick? Did they will themselves to not be sick knowing they had a vacation or an adventure ahead of them?
The trick for me is to believe and act like I am getting cured but not over do it such that I don’t allow my body to heal. That is a fine line and I am trying to figure out how to walk that tight rope. I can feel my interest in being more productive, in getting my mind wrapped into engaging projects, and in being able to serve other folks to the extent I am capable. Another tricky element is acknowledging and being honest about what you can and cannot do even though in your mind you can’t imagine not doing something you have always done.
I hope you are all enjoying summer and spending quality time with your loved ones! I so appreciate all the love and support from all of you and am humbled reading your comments and just knowing that you think about me and send me positive feelings and thoughts.
Make it a great day!
Below is a nice poem in which Longfellow compares the arrow to life, and the songs are compared to feelings. Even though songs (feelings) are unseen, they are still real.
The Arrow and the Song
By Henry Wadsworth Longfellow
I shot an arrow into the air,
It fell to earth, I knew not where;
For, so swiftly it flew, the sight
Could not follow it in its flight.
I breathed a song into the air,
It fell to earth, I knew not where;
For who has sight so keen and strong,
That it can follow the flight of song?
Long, long afterward, in an oak
I found the arrow, still unbroke;
And the song, from beginning to end,
I found again in the heart of a friend.