I feel fortunate beyond belief. We met with the wonderful oncologist today, whose immediate words as she shook my hand were, "Hi Amanda, you're going to be fine." She told me that my type of cancer, Nodular Sclerosing Hodgkin's Lymphoma, is cured in 95% of cases like mine and that I would live "happily ever after, I promise." I figure you can't get much better than that. I will have some more scans done to determine what phase the cancer is in, but judging by my current health and what they already know, she is pretty sure it is stage II. Even if it is stage III it should be curable; it would just change the treatment a little bit. It is interesting that after taking a very detailed health history she said that most of the odd things I've experienced since Fiona's birth (I guess I'll have to give more details about all that another time) are unrelated and have more to do with pregnancy and hormones. The only symptom which is definitely a sign of Hodgkin's Disease is the erythema nodosum, which sounds like a Harry Potter chant but is actually the technical term for the odd rash I had on my leg starting in October which was accompanied by the burning, tingling sensation, the edema in the evenings (swollen ankles like I used to have when I was a few weeks from giving birth) and also strange knots and indentations in the leg. Apparently this is a very common symptom and of course is what finally convinced me I needed to see a doctor.
I will have 3-4 months of chemotherapy which will begin late next week or early the week after. I will go in one day for 4-5 hours every two weeks and they will give me the drug cocktail intravenously. After I have completed all the rounds of chemotherapy I will likely have four weeks of radiation treatment (everyday or every other day), and then I will be done. So even if there end up being delays due to colds or a low white cell blood count or whatever, we should be wrapping this thing up by the time school starts in the fall.
I was thrilled and amazed to find out that on this particular chemotherapy, nausea is rare. Wow, what a pleasant surprise for a woman who has endured three horribly nauseating pregnancies! Apparently I will take a really good new pill the day before each treatment and then they will also infuse Zofran into my blood stream along with the other drugs. Zofran is the anti-nausea drug I took during my last two pregnancies. The doctor said even queasy people like me really don't get sick on this particular chemo. I am told I will feel somewhat tired the day of treatment and for a day or two afterwards, and that then I will basically feel normal until the treatment starts again. All in all, this sounds a whole lot easier to me than being pregnant.
Best of all was the news that unlike the Hodgkin's treatments a decade or two ago, the current treatment rarely causes fertility problems in women under age 35. This was a big concern to me, as we had hoped Fiona would not be our last child. We were prepared for that to complicate things, but it looks like it won't. Once I have been through treatment and had some time to recover and see that my health is good, I should be able to become pregnant again. And I pledge to complain less about it the fourth time around (although really for all you pregos out there, it is such a hard thing so give yourself a pat on the back)!
So truly the most traumatic part will be losing my hair. The doctor says it comes out like clockwork on day 15 of the treatment. I will admit it: I have tendencies toward vanity. I hope my friends will accept this as a likable quirk. It's not that I think I'm gorgeous or anything, but in recent years in an attempt to feel young despite being upwards of 30 and mother to more than one baby, I've taken more of an interest in my clothes, my makeup, and yes, my hair. I really like my hair right now. I have this fabulous hairstylist who half my friends go to and we all have such cute hair. I am guilty of admiring my hair in the mirror multiple times throughout the day. My husband fed this attitude by literally complimenting me on my hair ten times a day for like, three months the first time I got it cut this way about a year ago. And on top of it, I have been leading the music at church for almost two years now and I am not making this up when I say that for every comment I get about the nice music, I get at least 3 comments on my appearance, be it clothing, accessories, or yes, hair. I didn't believe it myself at first but this is totally consistent every Sunday and I would be lying if I said I didn't enjoy getting compliments. I think it is just that there's not much to look at when you're sitting there in church, so you start critiquing the chorister's latest outfit. So clearly part of the reason I need to go through all of this is to gain humility.
But I do think the love of hair is partly genetic and can't be helped. When I told my brother how put out I was about losing the hair he laughed at me and then I said, "You're a guy, and you wouldn't want to lose your hair," to which he responded, "Point taken. You're right. I would not want to lose my hair." He spends plenty of time getting it to look just right, as did my father. One famous story told at Dad's funeral was the fact that for five or six years he used that brush-in hair dye and my mom didn't even know it! He said that at age 42 when my youngest brother was born following a very stressful pregnancy, he looked at this baby and said to himself, "This poor baby has an old man for a father." With everything he'd been through in those last months before Scott's birth, he had grayed quite a bit, and he always had such a handsome full head of dark hair. So he started brushing in that stuff every morning in a bathroom on the other side of the house and this all came out over a dinner conversation with friends years later. They commented on how he had very little gray and accused him of dying his hair but Mom said, "Oh, Bill would never do that." Then came the confession. He said he figured if his own wife couldn't tell, it must have looked pretty natural.
Now, anyone who knew my father will tell you he was among the kindest, gentlest, most grateful men on the face of the earth. Super content--I honestly almost never ever heard him complain (including when his cancer treatment made him lose his hair). Perhaps if someone like that cared so much about his appearance once upon a time, I can be forgiven.
Tom, while very sympathetic to my angst regarding this issue, is excited about the opportunity to shave his head. He has done this twice before, both times in college. The first time was during our Freshman year and we were best friends but not yet dating. All day long I saw mutual friends who would say, "Did you know Tom shaved his head?" and then carefully watched for my reaction. These were the scads of people who clearly saw I was in love before I did. I kept wondering why they all seemed to think it was so daring for him to do such a thing without my permission. The second time was our last year in college, several months after we'd gotten married. I went on a trip home to go to my brother's missionary farewell and came back to a bald husband. So I guess this is Tom's once-in-a-lifetime chance to have his wife's full support in his head-shaving antics, as well as hopefully not getting too much slack at work.
I explained to the boys that happily the treatment won't make me sick like I thought it would, but it will make me tired and oh by the way I'll be losing my hair. Philip put on his mad glare face and said gruffly, "I don't WANT you to lose your hair!" Join the club, buddy. Tonight when Miles said his prayers he thanked Heavenly Father that I would have medicine to make me well and asked that "the medicine that will make her hair fall out won't make too much of it fall out." Afterwards, we explained that actually I will be completely bald. Phil reiterated that "You CANNOT BE BALD!!!" Tom said he would be shaving his head and the boys could too! Miles seemed pretty concerned about that. "Maybe I could just get a haircut," he suggested. He was reassured that he could cut however much hair he was comfortable with.
Looking at pictures of my mom after her treatment made me realize that I had rewritten my memories. In my mind she had her regular hairstyle when Miles was born, eight months after she finished chemotherapy. Actually, it was still short and curly for over a year after her treatments ended. So I am sadly seeing that I will not regain my current cute hairstyle until at least a year and a half after the hair falls out. Well maybe styles will change by then anyway. At least this gives me a good excuse to see how I look with really short hair, and I am also kind of enthused about the prospect of a few months of natural curls.
On a more serious note, I am overwhelmed with gratitude and at the same time the feeling of "Why me?" I don't mean why did I get cancer, I mean why do I get to survive it? Why am I so blessed with incredible friends and family who will get me through this thing knowing from the start that the ending will be a happy one? Why is it that others I know, family and friends, have already been taken by disease, while still others are fighting what looks like a losing battle for their lives, super gracefully I might add, and I have the good fortune of having the best kind of cancer, where the only thing I can find to whine about is hair? It is hard to see people I love suffer, and I have a feeling it is going to be a lot less hard to get through this little bump in the road.
I don't know the answers to these questions but I am grateful to know that there is a God in heaven who does. I know that through our trials we gain maturity and depth of character, and that many of these dear ones who are called upon to endure so much have those qualities in high doses. I imagine people like my father and my mother-in-law, looking down on me from heaven, where they are free from pain and I am sure they were welcomed with much celebration back in 2003. They and others who endure various hardships have been great examples to me, and I have thought so much about them and their goodness these last few weeks. I really want to give more of myself to others in the future.
Daddy guppy (mommy was hiding along the filter pump to keep warm)
Baby guppy (1 of 20--maybe)
Usually, though, Superman not only has the costume but also two light sabers attached to his belt--one on either side, thus alerting enemies that he is a Jedi Knight. Superman must be ready to use the Force at all times. Sometimes he has to leave his light sabers in the car but he still has the Force to protect him. For example, one day at the dermatalogist's she was taking a chunk out of my leg to biopsy to see what the rash was all about. (This was one symptom that eventually alerted us to a more serious health problem.) The doctor's assistant was trying to keep the kids busy and Philip, rather than noticing the intriguing procedure going on atop the table, quoted straight out of an Early Reader that Miles has: "We must be careful for Jaba the Hutt. He is a bad guy, but he loves his son, Ratta."
Well, it looked as though very little could break the magical Superman spell until this weekend when a friend took the kids one evening. Upon our return, we found Philip dressed in a Batman suit. We about fell over laughing. We were told that his friend had outgrown it and that is was his to keep. As Tom put him in the car he said, "Get your straps on, Phil," to which Philip replied, "No, I'm Superman. I mean Batman." It seems he is now in a bit of an identity crisis. We got home and he argued over whether he could sleep in the Batman suit, but finally consented to remove it and place it on his bedpost, where the Superman cape normally hangs. A few minutes later he decided that he would actually hang the entire Superman outfit on the other bed post, thus having both costumes ready and waiting for him when awakening in the morning. Today he was disappointed to find that it was Sunday and he couldn't wear either costume to church, but when we got home he changed to his Batman costume and then proudly wore it to Grandma's house for dinner (see picture below). Superman's voice is deep and resounding, while Batman's is raspy, so that helps us know which one he is when he isn't dressed for it. He has offered to guard not only our house but the bishop's across the street, so we are all feeling pretty well protected.
