At Our House: May 2009

Here are some highlights of the last couple of weeks! I am getting so happy to know that the hard part is over soon!

Miles finished baseball, hit the ball well at his three bats in his last game, and came home with his trophy--very exciting.

Philip got his tiny electric blue soccer cleats in the mail (his dad is a terrific online shopper) in anticipation of starting soccer
"in the fall when I am three and a half. And all the kids will say, he is so smart and so fast." He frequently wears them so he can run super fast. The laces are so long we have to wrap them around the shoe.

Fiona has spent the last several months of her life removing many of the books from our hall book shelf. It dawned on me recently that while we read to the boys a lot, we haven't exactly been reading much to her....so now she has a new-found love of board books since her mother finally got a clue and started reading more to her. (I am thinking perhaps this is a common plight of the third child....) She especially enjoys any book that features dogs, or any animal really, as she refers to them all as dogs. She is also gaining more words and often repeating words that we say.

Improved weather has allowed Tom to bike to work more. Happy, happy.

Only 2 weeks left of chemo for Mandy (3 treatments.) At last week's treatment I was so excited to find out that I get to taper off of the Prednisone. That is fabulous because I have gained somewhere between 10 & 15 lbs. due to that drug making me hungry all the time. Lack of exercise has made it look worse than it is too. I've lost a lot of muscle. Anyway, I am thrilled that I will be done taking the Prednisone the day before my last chemo treatment. I also get to meet with the radiologist later this week to go over details of radiation, which will start at the end of June and go throughout most of July. The doctor has reassured me that radiation will be easier because the only side effect should be tiredness. This is fabulous news. I can't wait to be done with all the other crazy side effects the chemo has caused. Every week I get bone pain in new and interesting places, like my big toe or under my chin or in my neck. However, I have been told I can stay on the Aleve for the duration of chemotherapy, so it keeps the pain manageable. Anyone can tell you I am ten times more cheerful since about a week ago because I really feel like I am getting close to the end of the hard part! 8 days until the last day of chemotherapy.

At my treatment on Tuesday my favorite nurse, who usually does my infusions, was hilarious. They have to be very careful about verifying the patient's name and birthday before pumping a bunch of toxic chemicals into you. Two nurses have to stand there and read the info and ask the patient to repeat it. Every single time I say my name and birth date, she says, referring to me, "She was one year old when I finished college." I always tell whoever is with me that she is going to say it and then we laugh as she says it, word for word. This week the center was packed due to the holiday the day before. She and the other nurse gathered around me and she said, "Now we have to say this. It is good luck." Then she yelled in a loud voice, "Everybody, she was one year old when I finished college," to which I responded, "Thank you, thank you, I think I'm the youngest one in the room!"

Our friends and family continue to be incredible, and in the news there we have several friends far and near who have welcomed darling new babies this month and several more who are now expecting....so exciting! Our nephew also got word that he will be serving as a missionary in Orlando, FL leaving in August. We will miss him, especially Philip, as he likes to boss his cousin around while they both wear their soccer shoes.

Today we went to their congregation for our niece's missionary farewell and her aunt, her dad, Tom and I actually sang the musical number. I wore my wig for the first time, seeing as how I was up in front of a bunch of people who don't know me. It was an odd feeling being back in the position of it not being obvious to everyone who looked at me that I have this illness. I wasn't sure if I liked that feeling or not. It made me feel strangely vulnerable and maybe a little bit fake. The wig is pretty cute though, and not itchy at all as I had anticipated. It didn't make me any warmer than a hat or scarf does. I will probably wear it more often for those types of occasions.

We had a marvelous time all afternoon with extended family celebrating and saying goodbye to our niece. On the way home in the car this evening, I took off the wig and Philip said, "Mom, put your pretend hair back on." I told him I was getting hot and I would wear it another day. He looked at me and said, "I don't like your sickness."

Below is a great video of the boys last weekend running their own exercise show. If only we could bottle that energy! Tom and I are definitely feeling motivated to dive back into exercising with a vengeance come the fall.

How cute is that? It's a clipboard of sorts. This is the kind of stuff that I get from Miles almost every day. His favorite houses to go to are those with lots of art supplies. He comes home with all kinds of projects that say things like "Greatest Mom ever." He is so sweet.

I am embarrassed to admit that despite having been an English teacher for four years before having my children, I have never read Charles Dickens' book Great Expectations. I do love to read a good book but it seems as the years go by I have less and less time and am reluctant to commit to anything too long. At least my book club entices me to read a few good books each year. Tom, on the other hand, is an avid reader and despite being super busy and attentive to his family, he manages to always be reading something.

I've always been more of a writer than a reader. I've kept oodles of journals and scrapbooks over the years. When I taught 6th-graders, their favorite part of the week was Friday afternoons when I read to them from my 6th grade diary. It was called "This week in the life of Mrs. Carmack." (I think half the reason I went into teaching was the captive audience. It gave me a sense of star quality.) My parents gave me a typewriter at age 8 and I got very good at it. There was a lot of parental pride in the 77 page play I wrote in third grade. It was called "The Baby Boogie Dancers" and it was all about these 2-year-old twin girls who continually sneaked out of the house to star in concerts. It included about a billion parody songs that I wrote. A kid from school took the play and had it photocopied a bazillion times at his dad's office so that all of my friends could have their script. That was because, you know, we were fully intending to perform it. 8-year-olds think big, but they lack perspective.

Now I remind myself I am gaining perspective in all sorts of ways. I was a very dramatic child and I used to fantasize about something perfectly tragic happening so I could see what it was like to experience tremendous anguish; even at a young age I could see there was some value to that. However, it had to be something that would miraculously end. For example, I would always close my eyes in the shower and imagine that I suddenly went blind for a month or two. Then one day in the shower my sight would return and I would be all the better for having endured the experience. Well, I guess it's actually preferable standing in the shower losing hair day after day and thinking how fortunate I am that it will all end in a few months and I really will be better for having been through this experience.

I have been slow about updating the blog for many reasons, mostly just the sheer exhaustion of the chemotherapy catching up to me. My fingers are getting more and more tingly and numb, which makes it a little harder to type. I have always been proud of my excellent typing skills. I'll never forget 7th grade typing class, where the teacher with the major comb-over sat behind a large drum beating away, "C, C, C. D, D, D. H, H, H. J, J, J." After about two days he basically made me the T.A. because I already typed close to 40 wpm. In college when I took the typing test for temp work, I typed 80 wpm. I'm still pretty fast now, but it hurts some and I make a lot more mistakes. Bummer. Sometimes if I'm using the laptop and it's warm, my fingers actually start peeling a little bit. Kind of interesting.

When I started all of this, I had ideas about how it was supposed to go. I had expectations of being exceedingly tired--maybe even more so than I actually am--and perhaps having a little nausea here and there. I knew I would lose my hair for a while. I think that if all I had experienced throughout treatment was being bald, tired and a little nauseated, I would truly have handled it all with the positive attitude everyone seems to have assigned me.

But the truth is, while my friends have far exceeded any expectations I had in helping and encouraging me and my family, the whole Hodgkins Lymphoma-fighting experience has entailed more than I thought. My loved ones can tell you that sometimes I have been a grump! I didn't expect all of the side effects I've experienced, which means I couldn't plan for them. As a planner extraordinaire, I want only nice things to take me by surprise, like the awesome patent leather red Crocs wedge sandals that my husband bought for me that arrived in the mail this week. If something is going to be difficult, I'd like to know about it in advance. As I've told everyone, Hodgkins Lymphoma is the best kind of cancer to get. Somehow I thought that meant it would be a little easier.

I think there's a lot of value in being able to look back on what you've been through, so I'm going to document all of the tough things that have happened over the last few weeks which I didn't expect. If learning about it disturbs your sunny view of me or makes you uncomfortable by reminding you of just how mortal we all are, by all means quit reading. But if you're really interested in the honest truth, press on!

I didn't expect to be allergic to things like iodine and sylfa drugs. That was an adventure I've already described.

The mouth sores are no fun, but are largely controlled by the special mouthwash. Trouble is, I'm sick of the syrupy mouthwash taste. I've covered that one sufficiently already though.

The tingling fingers and toes are pretty disturbing. It's kind of like when limbs fall asleep. But they never wake up. I can't unscrew most lids and I drop things more often. Sometimes my whole arm starts to tremble. It hurts to play the piano, so I don't do it. That's kind of sad for a former piano teacher who has always gotten a lot of joy and comfort from playing and writing music. However, because the numbness is a common side effect it isn't as alarming as some of the other stuff. The doctor says we don't worry as long as I can still button and zip. So every day I make sure to button and zip. It's not as easy as it once was, but I can still do it. Makes me think if Michael J Fox again. They actually had a great article in a magazine in the doctor's office a couple of days after I mentioned him in our blog and I started reading all about how it takes him 20 minutes to get dressed in the morning. The magazine disappeared and I never got to finish reading the article, but the guy truly is remarkable. Anyway, the doctor promises the trouble with my hands will go away eventually, most likely "within a few months" of finishing chemotherapy. In the meantime, I do get out of most of the diaper changes, so it has its merits.

Every week when I go to chemotherapy and weigh in, I'm a bit dismayed. I had this idea that people lost weight during chemo due to the nausea and food not tasting good. Instead, I have gained about eight pounds and am officially too heavy to be considered a healthy weight for my height. It is because of the Prednisone I have to take every other day. Not only does this steroid sometimes make me anxious and jittery, but it makes me ravenous! Just like when I was pregnant, I sometimes wake up in the middle of the night with a sick, hungry feeling I know will not go away unless I get up and eat a bowl of cereal. Plus, since I'm so tired I am vegging out more and every time I turn around I am thinking, "I'm a little bored...I think I'll eat!" I feel like I am going through something tough so I deserve to consume whatever I want. Bad idea. I have always been so pleased to get back to the same weight after each baby I had, and now it looks as though I will have to work hard to get there again--but my fourth baby was cancer, the only one who wasn't carefully and intentionally planned.

I have had this unexplained stomach cramping and gastrointestinal discomfort off and on and it really bothered me because no one could identify where it came from. I thought perhaps it had to do with the Lupron shot but the effects of that have pretty much worn off now. I finally decided it is from taking the stool softener. Ironically, I do not suffer from constipation, the side effect that everyone else seems to have. So taking the stool softener once a day (apparently some people take it three times a day) to prevent this problem caused me more trouble. I have cut way back, taking it only a few days a week or less, and that seems to have solved that problem.

Shots. They cause me woe. First there was the issue of the Lupron for fertility. After a great deal of thought, prayer, research, discussion and consideration, I decided not to take any more Lupron shots, largely due to Tom's thoughts on the matter. Obviously it is his choice too, but he had always said he would support me in whatever my final decision was. He is concerned about me heaping more unwanted side effects onto myself, all to possibly boost my fertility some unquantified, unproven amount, when my fertility is historically good and is supposed to have an excellent chance of still being good without doing anything extra. Add the exorbitant cost on top of it and it does seem like more trouble than it is worth. Once I finally made that decision I felt much better. We are putting that behind us and hoping for the best in the future. We hope and feel that eventually we'll add to our family, but recognize it might not be in the cards. We've actually met a lot of people who come from similar families, though. It is interesting--they keep cropping up all over saying things like, "My mom had me and my sister and then major back surgery. She was told she'd never have any more children. 8 years later she had our brother followed by another brother." It all sounds delightful. What will be will be. Either way, we have big plans for the next several years! We are excited to spruce up the house and get rid of clutter, do more traveling, see more concerts and shows, take the kids to more local attractions, and most especially to be in a position to provide service for others who need it. We are very excited. There is a light at the end of the tunnel, and we are definitely planning to live life more fully when this is all over.

The Neupogen shots are what have caused me the most trouble and have really dragged me down. A couple of weeks ago, the doctor decided I should go to 2-5 Neupogen shots every week (instead of 4-5 every other week) in order to make sure my immune system stays boosted. Unfortunately with all of those shots, I was suffering from the bone pain pretty much all of the time. It is kind of like when you have totally gone overboard exercising and your whole body just aches. It wouldn't necessarily be that hard to deal with for a day, but when you already have other side effects and you are exhausted much of the time, it really wears on you. In particular, I had constant shooting pains in my arms. The only time I felt better was in the shower, so I kept taking long showers. At first, I was allowed to take large doses of Ibuprofen round the clock, but then they said it would interfere with my medications and I had to switch to Tylenol and/or Vicadin. I knew Tylenol wouldn't help me because it never has. The Vicadin didn't really work either. So I was in a lot of constant pain, and for me it was the thing that wasn't bearable. It was really starting to get to me. I was doing a lot of crying.

Then a friend suggested Aleve, which I'd never tried before. The doctor said I could take it and it has really helped a lot. I still have some pain but so far it is exceedingly more bearable. So now my positive attitude is returning. I don't know how long they are going to let me keep taking it (the bottle says not more than 10 days), but at least each day with less pain is a day closer to the end of chemotherapy. I have a whole new outlook on chronic pain. I had a pretty hard time handling a couple of weeks of it. I will never judge anyone for being grumpy again, especially if they are elderly. I am going to rejoice at every old person's funeral. Of course we all miss the person we have lost, but for them it is fantastic--they are in a place where they no longer feel pain! I feel kind of guilty about my lack of "Go fight go endure the pain" mentality. I don't know what other people feel, so I don't know if I just am more susceptible to pain or if I'm a big baby. Sometimes I think there is something wrong with me and I just need to buck up; other times I think I just have low pain tolerance and it isn't my fault. As an infant I was very difficult and screamed my way through the first couple of years of life, largely due to regular ear infections. I think I am going to choose to assume that is proof I was born with a low pain threshold.

The Neupogen shots work by making the body rapidly produce more white blood cells. I get my blood tested every Saturday to see where I am, and a coupe of weeks ago I got to go on a Friday instead because I'd been in so much pain. When I checked the report online, I completely freaked out!

A normal white blood cell count is between 4 and 11. My white blood cell count that day was 78.8. Underneath that on the report it said CRITICAL and something like "Reverified by John Doe at 2:36 p.m." I frantically emailed my doctor, inquiring if this was a problem or a mistake. She said this can happen with the shots. I just imagined my bones literally bursting with all of the white blood cells. No wonder it was so painful!

I do find that watching comedies takes my mind off the pain, so we are watching a lot more comedies these days. I should mention here that we have a very large DVD collection and have always said the only way to justify it is to lend movies out to everyone. So far, there are only a few families who have picked up on this fabulous free opportunity. If you live nearby us, seriously, come borrow a movie any time.

Yesterday I had a PET scan because my oncologist couldn't feel any more cancer and wanted to check it out. The same quirky doctor from last time was there and asked if he could feel the nodes in my neck before we started because "You had A LOT before." After the scan was done he let me come and look. I got to see the first PET scan that had all kinds of marks all over it, and then the second one which looks completely clear. He said, "I don't know why they're going to have you do radiation. It doesn't look like there will be anything to radiate."

He told me these were preliminary results but that clearly my body had responded well to the treatment. This had been the expectation, and yet I was surprised at how it affected me. I sat in the lobby waiting for my mom to pick me up, crying and calling a few friends and relatives. What a relief.

Then I was a bit disappointed to read the official report later. It is full of medical mumbo jumbo that I do not understand, but as far as I can tell this was a combination PET/CT scan, and the PET scan looks completely normal but the CT still shows that I may have some minimal cancer. It states that I have had dramatic improvement, so I am assuming that whatever is left will be taken out with the rest of my treatment, but I am a little sad that I can't yet say I'm cancer-free. I hope that it will all be explained to me when I go in for my appointment on Monday.

I guess I have been learning the hard way that we don't always have our expectations met. Life is just plain harder than we plan it to be. I expected that during all of this time when my friends are being so fantastic, I'd show them how much I appreciate it by being totally up to date on all of my thank you notes and checking out everyone's blogs. I hoped my children would settle in to the routine so well that they would never give anyone a hard time. I didn't expect to be lying in my bed one morning, so exhausted I could barely move, listening to my nanny have a conversation with Philip about how important it is for them to clean up the poop on the kitchen floor and get him into a new pair of underwear and pants. I didn't expect the boys to argue quite as much or fall apart as much as they do. Why didn't I expect these things? I mean really, an upheaval in routine is hard on everyone, especially little kids! Perhaps my tendency toward optimism is just too unrealistic!

Here are two quotes from Great Expectations
that I like, despite having never read the book:

"Heaven knows we need never be ashamed of our tears, for they are rain upon the blinding dust of earth, overlying our hard hearts." I am trying to remind myself that it's okay to cry sometimes. It doesn't necessarily mean I'm weak, ungrateful, or that I don't have a good attitude. That goes for my kids too. (Lovin' these pictures of Fiona crying. She is so cute no matter what mood she is in!) Sometimes you just need to cry, and it's often in your tears that you become more honest, more humble, more self-aware, and closer to loved ones, including God.

"That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it, and think how different its course would have been. Pause you who read this, and think for a moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on one memorable day."

We all have a lot of days like those--any event, happy or sad, that we allow to cause a change in us, like having a new child or having a new job or having a new illness. Hopefully we make it into a positive change. Then sometimes we have a realization that makes us think about how lucky we are to still have that child or that job or even that illness. For me and my husband, this challenge has been a wake-up call. A chance to get to see how many incredible human beings we know who already seem to have mastered the concept of caring for each other, and to pledge to be more like them. A chance to put that love for planning to work by dreaming up all sorts of fun things to do instead of just talking about doing them. A chance to reevaluate what is most important in life and to start acting like it. A chance to realize how blessed we are and to gain more compassion for those who face other difficult circumstances. A chance to reaffirm that for us personally, we can't do much without relying on the grace and wisdom of a higher power. A chance to stop worrying over or trying to control the things we can't and to learn to control the things we can, such as our own attitudes and actions.

To set new great expectations for ourselves and our future! I guess I was born with a low pain threshold but a pretty high dose of optimism, so maybe they will balance each other out. For tonight I am very pleased to be feeling well and heading out for our first date in weeks! Seeing the new Star Trek movie with Tom the Trekkie. Should be good.