Been A Long Day

Today was a very long day. Nick and I left the house around 10:30AM and we didn't get home until 7:40PM. Kate met us down at the hospital and together we made it through a stressful day. Today was Nick's appointment to meet with the radiation/oncology doctors. It has been a long week of ruminating on and thinking about the idea of choosing radiation as a treatment option for Nick's leukemia. The idea of willingly accepting a treatment like this goes against everything that is natural to our concept of life preservation. But, then again, once you have had an assortment of toxic chemicals pumped into your body, had someone else's bone marrow cells infused into your blood, and you have taken more pharmaceuticals than you ever imagined was possible, well, I guess it is not such a huge leap to accept gamma ray irradiation of your brain and spine as just the next weapon in the arsenal against this conniving and cunning enemy. No wonder we were all on edge with nervous energy and high anxiety about what was to come. Every night I just want to cry (and I often do) when I think about Nick having to go through another set of what I really consider to be barbaric and medieval treatments. I am trying to work my way around to seeing this as a positive in that it may help Nick beat this disease. It will take time, if I can ever turn it around.

The newest set of doctors on this cruise ship from hell seem to feel that it will be "safe" for Nick to get this treatment, safe being a relative term and not at all reassuring. If you read about the side effects of cranial-spinal irradiation, the laundry list of bad things is daunting and produces a gnawing pain in my stomach. And yet today, the doctors seemed to be saying that the "only" side effects he had to worry about were nausea and fatigue. At this point I wanted to stand up on the exam table in the little cramped room where we are all meeting (Nick, me, Kate, and two doctors, and a nurse, except she wasn't there cause she had to go to class) and do my best Norma Rae impersonation and SCREAM at the top of my anguished mother lungs, "YOU ARE BLEEPING (expletive deleted) KIDDING ME, RIGHT?" I cannot begin to explain the fear I have about this....I don't know why, I just do. Since it seems we have already purchased tickets for this ride, I can only pray that the benefits of this treatment will outweigh the risks. How does this sound to you?

Radiation therapy works by damaging the DNA of cells. The damage is caused by a photon, electron, proton, neutron, or ion beam directly or indirectly ionizing the atoms which make up the DNA chain. OH MY GOD!! Sure just go on and ionize brain cells and spine cells.

And the actual process of receiving the radiation does not seem particularly pleasant. I will save the details for another post, because I cannot face relaying all that information right now.

Nick's blood work was stable and his liver enzymes are improving (a small positive in this good news wasteland). Nick's LP and IT chemo treatment went well. Dr. Frosty was back in town, so he spent some time answering questions that Nick had about the radiation.

Nick had several other visitors including Nurse Lovely and the nutritionist. The nutritionist had some good suggestions, but, most of the stuff I already knew. It is just a matter of getting Nick on the same page with the goal of gaining weight. I am very worried now because he lost weight this week (down to 142 lbs.) and the radiation therapy can cause a lot of nausea and fatigue. The nausea ALWAYS impacts on Nick's ability to eat and the weight will fall off even more.

Right now, I don't know when they will be starting the treatments, but, it may be as early as sometime next week. Nick has to go to hospital tomorrow for a whole body CT scan and "molding" of the devices used to hold his body in place for the treatments. Every time Nick gets a treatment, he must be "locked" down into this mold and he will not be able to move. Every time I think of my child getting zapped with this radiation, I just want to crawl into a dark place and never come out. I will accept it because I have to and I will be there for Nick come hell or high water because I love him so much and we both want him to be well so badly. I feel like a do before he had the BMT, so DAMN SCARED! So I when I found these quotes by one of Nick's favorite poets, I felt just a little better.

“Always do what you are afraid to do.” Ralph Waldo Emerson

“He who is not everyday conquering some fear has not learned the secret of life.” Ralph Waldo Emerson