2/3/97
Today is Monday and I think it is going to be my first day back on radiation! I decided on Friday that I should get right back into treatment, because if my blood can take it, then finishing my remaining 17 pelvic zappings is the optimum way to go. I want to be able to feel secure that my HD has been hit so hard that there is no way it can come back, for a second go at a cure would be a bit much to take!

My plan is to get a quick blood count at Dr. Cooney's office, and then as long as my platelets are at least 120, then I'll go get zapped at the hospital. Dr. Cooney agreed with my plan to get a quick finger stick blood count at his office every other day, so I can keep a close eye on my counts. If my platelets drop to 75, then I will quit treatment again. It is my thought that my counts should remain fairly stable for the first two weeks, for in the past there seemed to be some sort of two week delay before my counts showed any damage. I want to plow through these last treatments before my blood even knows what is happening! I am going to be doing a megaton of platelet visualizing to counteract the many megavolts of radiation my pelvic bone marrow is about to endure! I have to, I will, I must! You'll see!

It is later in the day and I am back from the hospital. I am very bummed out! My platelets were only 76, and my WBC's were only 2.7. I feel like I am being hung upside down and thrashed against a wall! I think that last week's high platelet count was wrong, because they sent the same blood out to another lab and got a count of 82. I don't like thinking that my platelets could be dropping, because that makes me think that I may be having some sort of relapse. I talked to Dr. Knox at the hospital and she thinks it is time to do a Cat Scan, just to make sure that nothing is happening HD-wise in my pelvis, even though she is 99.9% sure that all the chemo and radiation I have had explains my low counts. I really want to believe her, so I will. I am beginning to feel better, and I have decided that even if I were to relapse, or end up with permanently damaged marrow, or if I should ever end up needing a Bone Marrow Transplant, I will live through it.

Meanwhile, Dr. Knox is going to be away for the next two weeks and is leaving me in the hands of Dr. Hoppe who is the most experienced HD doctor in the world, at least in this universe, and he is also the head of Stanford's Radiation Department. It is time that I meet with the head honcho anyway, and I do believe he will like me, for one of his hobbies is HD, and we all know that I had enough HD in me to kill an elephant. In the meantime, my job now is to rest, eat and visualize bigtime! I must admit that this week-end I did not do my platelet visualizations, and my only excuse is that I felt so good and was so busy preparing my life for more radiation that I simply forgot. So I am going to print myself out a sign to put above my bed that tells me to visualize. I need to think of it like I do all my pills, it is medicine! In fact, I think I will swalllow a big visualization pill right now.

2/6/97
It is an up in the air day today! I am going in to Dr. Cooney's office for a quick blood count, and then either of two things will happen. If my counts, especially my platelets, are high then I get to go home, but if my counts are stagnant or lower, then I get to have a bone marrow biopsy at 3pm. I also have a cold, which I forgot to mention to Dr. Cooney, so I do not know if that will change my counts in any way, but no matter what happens I am going to feel relieved. If they are high, I will be happy, and if they are low then I will get to have more information from the biopsy. I did some visualizing last night, and I am happy to say that the platelet visualizing flowed easily and I was able to get a big aerial view. I take that as a sign that my blood is cooperating with me, but I still refuse to guess my counts. This is all just a minor obstacle, it will not last forever, and I know how lucky I am that my blood type is B+! I can feel all the little plus signs flying around my bloodstream!

It is later in the day and I did not need the biopsy! All my counts were up! My WBC's were 4.8 (without Neupogen, but with a cold), my hemoglobin was 10.3, and my platelets were up to 95. So the plan now is to get a thorough pelvic exam on Tuesday along with another blood count, and if all goes as is expected, I will have radiation that day. That sign above my bed reminding me to visualize must be working!

Next week is going to be such a busy week, and since I am beginning to feel normal, maybe it will be easy for me! Feeling normal is just such a strange way to feel, kind of like peering from behind a tree on another planet and taking that first step into an alien world. I am not the same person anymore! There is no garbage attached to my feet!

2/15/97
I finally got to see Dr. Hoppe! I emailed him with a bunch of questions before my appointment, plus the resident doctor, Dr. Wolden, briefed him about my entire case prior to our meeting. After an hour and a half wait, Dr. Hoppe came in and I immediately liked him. He looked really healthy and I could tell that I had his complete attention. He told me he got my message and that it would be easy to answer my questions, for there were not answers for most of them. My basic question was "What is that fine line between killing me and curing me?" I knew that there was no answer, but I needed him to try to find that line anyway. I wanted his mind, the most experienced HD doctor in the world, to think hard about the best direction to take with my remaining treatments. For the first time I felt as though my radiation worries, mainly the fear of having my marrow become permanently damaged, were taken seriously and that I was finally getting a tailor-made adjustment to my treatments. Only Hoppe's words about my radiation future could make me feel safe! So when he proposed that we reduce the field of radiation, as I had mentioned in my email, and that I only have 10 more treatments at 150 rads/per day instead of radiating the full pelvic inverted Y field with 17 more treatments at 180/per day, I was instantly relieved. The plan now is to get a Cat Scan to make sure there is no activity HD-wise, although my many exams during the week showed no enlarged nodes, and then hopefully I will be able to complete the last of my radiation Hoppe-style!

Besides all that, I did the second chunk of shooting for the documentary that I am going to be in. The Stanford student, Ian, and his crew came over for a long shoot with me alone and then again with Brittany and I on my computer and cooking Valentines cookies. The next day the shooting continued with the support group at Stanford, so I got to see the other two people in the documentary and a lot of people I had not seen for a while. I need to get back in the group, and the only way I can is to take Brittany with me. She went with me one other time and I got the feeling that she understood every word, so perhaps it will be enlightening for her too. Most moms take their kids to the park, I take mine to the hospital. Maybe she will become a doctor.

2/22/97
I stopped visualizing for a while, partly because I am feeling healthy and my counts are nearing normal, but mostly because my mind needs a visual break. My usual images started turning a disgusting color and became motionless, so I decided that was a sign to just stop. Instead I am thinking about feeling healthy and trying to imagaine what it will be like to be normal again. I need to learn how to live without so much intense visualizing, especially a a cellular level. I need to just imagine that my body and immune system are functioning the way they did before the HD decided to visit. I consider it necessary for my survival! I have good genes and I need to put them to work!

2/26/97
I get zapped tomorrow, on Brittany's birthday! Dr. Hoppe took a close look at my Cat Scan, and he said that he did not see any signs of "bad nodes." But just in case there might be an HD cell hiding in some microscopic part of me, he decided that it would be a shame if we didn't radiate it. So I am going on the lower dose, smaller area for ten days plan. This all makes me happy! It almost seems as if I will be going to the hospital so they can give me some candy. I need this radiation, because I have already killed the HD twice in my abdomen and chest, so I need to follow-up with that mode of action with my pelvis. Chemo and radiation for everyone!

I saw Dr. Cooney this morning and we had a good chat about hormones. He says that he does not believe that there is substantial evidence that hormone replacement increases ones chance for breast cancer. I already have every statistic against me in the breast cancer category, my mother died of it, my sister had it twice, my maternal grandmother and grandfather had it, I live in the bay area, I have had chemo and radiation, and I am taking replacement hormones. It is my thought that I have already had my cancer, so it would be too rude for me to go through the process of getting rid of breast cancer too. I am going to will myself to stay healthy!

Dr. Cooney said that after these last ten treatments, he will do two extensive studies on me; one will be of my HD disease, and the other will determine risk factors I now face. All the while, I will be allowed to roam wild in the world again, but I will be like one of those tagged animals that wildlife researchers capture and test every now and then. In the future, if any disease gets in my body, it will be detected right away. That makes me feel safe, and I almost feel guilty that not everyone gets to be monitored so closely. It's as if I am royalty now, and I must be kept alive at all costs! It seems that being a survivor makes your life worth more!