Comments from the peanut gallery (that'd be Rich)

I thought it was time to give you all a medical update. We spoke to the oncology doctor on Tuesday and received a very positive update. Marcia is reacting well to the Chemo. Her white blood cell count is not too low and she is recovering well from the ongoing treatments. She has two more major treatments, with the last one occuring on April 27. Since it takes a couple of weeks to start feeling better, we expect to return to some resemblance of normal in mid May. She will continue a less invasive treatment every three weeks from May through the end of the year. These are not expected to be major (easy for me to say) and the hair will come back and the other side effects diminish in May. The doctor indicated that the long term prognosis is excellent with little active follow-up. June brings a final reconstruction surgery. We are thankful for great doctors, caring nurses, and complete health insurance. We don't know what we would do if we didn't have all three.

Many of you have asked how I am doing. Well, I'm doing okay... just okay. We have certainly learned that Marcia is the real source of personal strength in our household. In other words, I think I am the weenie! We have received many kindnesses from you in the form of meals, phone calls, cards, prayers, and positive thoughts. In the past, I have heard, and sometimes said, we are thinking/praying for you. To be honest, until this process, I never really understood what they meant. During this process, I think I have actually pysically felt your support. I sometimes think I can reach out and touch a cloud of support and caring that seems to surround us. It has reminded me of the importance of moving beyond the daily events of our lives and remembering the things that matter the most. We have always learned from the medical challenges in our family and you all have taught us how to gracefully receive help and appreciate what others can do for us. I think it will make us both more thoughtful as other people in our lives deal with life's challenges. Thanks.

We expect to lay low for the next eight weeks. When spring and Tulip Time arrives, we will re-emerge and move on. We will not, however, forget what you have meant to us during this time.

To toss or not to toss!

You know, it's interesting how much hair affects your self image. I always knew that my moods could be affected by having a bad hair day, but I never realized how much importance we put on having good hair. And how much having hair signifies being healthy. I think that's the hardest part for me. I've already said that I feel like there's a big "C" on my forehead, but why am I embarrassed by it? Why isn't my old "devil may care" attitude kicking in more?

When I was in high school, my parents didn't allow me to wear shorts to school. Well, I got around that by wearing them underneath my skirts (sorry, Dad) and then, while at my locker, I'd drop my skirt and step out of it right there in the hallway, for the shock value!! Where is that person I used to be? Why can't I just toss off my wig or hat whenever I want to?

I was at my favorite store the other morning, doing my usual cycle of making returns and then finding new things to purchase. I came across the hats and, as luck would have it, I had worn a cute hat that day with a knit cap underneath it so I could actually try these hats on without doing my fake out in the dressing room again (not that I would have had to fake anything...my cart was getting full!). But as I tried on the hats, I felt like I was drawing attention to myself in a way that I'm not accustomed to...like I wasn't just a normal person out shopping any more.

It's hard to describe the feelings I've had, or the reasons for them. I remember feeling like I was bragging (by bringing attention to myself) when I first put the pink survivor ribbon magnet on my car after my first bout of breast cancer (I actually heard someone else describe having these same feelings the other night on t.v.). And now I feel like people are watching me because I'm "different" now. What will it take for me to embrace my baldness and all that it stands for, and turn it into a positive, creative part of me?

It's funny, but since that day I've come to realize that I actually feel more comfortable and "normal" in hats and scarves than I do in my wigs. When I have my wig on, I don't feel normal at all, as I thought I would. I feel like I'm pretending to be me and I become more self-conscious, worrying that it's on straight or that it's going to shoot off of my head. When I am wearing a hat, there's no more pretense...I am me, I'm undergoing chemo and I'm bald. And I'm normal (well, Rich would dispute that claim). I just need to learn that it's okay to be bald (even though my head is small!). And maybe I just need to toss my wig in the air and see what happens!

Am I done yet?

People have been asking me if all is well, because I haven't posted anything on my blog lately. And I've had requests for current pictures of myself, so I guess I'd better do something about this!

For starters, the new picture I'm posting is of me standing with my new Friendship Quilt that was made by many loving hands from The Bank of Holland. I was invited to attend their weekly staff meeting today, on the pretext that the guest speaker was someone I would really be interested in hearing talk. So at 7:30 a.m. I dutifully walked up to the training room (where the meeting was) and found a seat...in the front row. I soon was to discover that there was no speaker... that the "meeting" was actually just a way to present Jodi, another cancer fighter, and me with our beautiful quilts. We were both totally surprised and humbled by these thoughtful gifts. It has been such fun looking at and reading all the different patches... they are all so clever and lovingly made. I have already wrapped mine around me today to keep me warm as I rested after my busy day. I feel surrounded by loving hands...thank you again, to all of you.

I really don't have anything else that is new to report. My old experiences continue to be my current experiences, just cumulative in nature now. My poor hands are "burned" again, only this time my knuckles and lower thumbs are involved. I'm going through the peeling stages now, only to have the burns probably begin all over again next week with my "big nasty" chemo. My face continues to get bright red and splotchy for the first week after chemo, so I'm not too pretty to look at for quite a few days. The newest side effect that I'm having is weakness in my leg mucles. I can hardly climb a flight of stairs without my legs screaming at me as if I'd just done one too many leg squats! My walking in the morning has been lessened by this, and riding my exercise bike is out because my legs just can't do it without screaming at me. I can walk regularly just fine...they're not weak that way. I just can't go long distances without getting tired. So in the meantime, I am gaining weight and I don't like THAT at all!

Curiously, I have not lost all of my hair at this point in time, but everything continues to get thinner. My eyebrows need enhancing with an eyebrow pencil, and my eyelashes get a boost from liner...but they're still there! My head is not completely bald...it has teeny baby hairs sprouting on it. What I miss the most in all of this are my taste buds! Nothing even sounds good to eat anymore, let alone tastes good. I'm eating balanced meals, just not much at any time. Let's just say that my journey is a challenge!

Hats, wigs or scarves?

Well, the novelty has worn off. I'm not as enamored with wearing wigs as I first was. Not having bad hair days seems to be in the past, or I've lost my touch, as I can't seem to feel comfortable with my wigs on anymore. The bangs seem to be in my eyes, or the back feels like it's inching up like a rubber band about to be released. I check to make sure it's on right, and usually it only needs a slight adjustment to make it straight, but it still doesn't feel right. But I guess the real question is, what feels right about wearing a wig?

I stopped at Macy's on my way home from having my car serviced today and wore my wig so that I would look "normal". I wanted to see if they had any cute hats. But as I stood in front of the mirror with a couple of hats in hand, I wondered how I was going to try them on. What a strange feeling that was! I decided to fake having to try something on in the dressing room (I thought it would look strange taking just hats in), and walked around until I found a shirt I could pretend I wanted and took it and the hats inside. I then went to the very last dressing room so that there'd be no chance of anyone walking by and seeing me pluck my hair off my head. Ahhhh, it felt so good to take my wig off for those few moments...and it felt so normal.

I did come home with two new hats, but after wearing one of them for a while, realized that it was too warm to wear as an inside hat. What a dummy I was...they were fleece hats to wear outside in the cold, not inside in the warm! But they were so soft and cozy! I then decided that maybe I needed to try scarves instead, so I untied the scarf I had around my neck and tried to see if I could do anything creative with it on my head. I folded it in half lengthwise and tied it in the back and then twisted it up around the sides and tied/twisted it on the top of my head. Voila! I think I'm on to something! It certainly is a lot cooler than a hat or wig, and with all the twisting involved, it gives my tiny little head some added dimension! This just may be the new me!

Knit hat + socks + gloves = ready for bed

Poor Rich. Just when he thought my wearing flannel jammies was bad enough, now he has to contend with my additional attire! The hat and socks don't make it through the night, as my head and feet warm up eventually. But the gloves are kept on to keep the Bag Balm on my hands, not the bedding. This morning Rich told me he had nightmares all night. When I asked him what he dreamed about, he said "cows". When I asked him why he dreamed about cows, he said it was because of the udder cream (Bag Balm) he smelled all night. Oh, he thinks he's so funny!

We spent this past weekend with five other couples we've know since our college days, and stayed at one of the couple's cottage just north of Grand Rapids. There's nothing like being with old friends who know you well. Lots of love and warm fuzzies among us, and tons of laughs. We took long walks along the lake, and made up our own version of Curling, enjoying eachother's company and the warm, sunny weather outside. One of the gals brought along her new power point projector and we were able to see pictures we had brought of our families and vacations, and some of the pictures went back to when our group first started getting together in the 80's. Oh, the hairstyles and clothes we wore. And how cute our kids were. Where has all the time gone?

I was the first to slip upstairs to bed for the night, and was surprised to realize that in the midst of all this love and happiness, I felt sad. It was like I suddenly remembered that I had cancer, and I didn't like that at all. No one had treated me differently; we talked freely about my chemo and my journey. But I think that being in the midst of all the normalcy of the weekend I realized that things really weren't normal, not for me at least. I didn't cry, I just reflected on why I was feeling this way. For the first time, I was very conscious of having to wear a hat or wig all the time, and it made me feel that big "C" on my forehead again. Sure, my wigs and hats are fun for short periods of time, but wearing them all the time as I did this weekend just reminded me of WHY I'm wearing them.

I guess I was due for a "pitty party" sooner or later, and mine didn't last long. It was just more of a reality check for me, and I've moved on from it. Tomorrow is my third "bad chemo" infusion which means that I'm half way through, and that's cause for celebration!

You can call me Michael

I'm sitting here typing with cotton gloves on, as my hands are slathered with Bag Balm. My latest chemo side effects are cracked & peeling finger tips, and what looks like burns on the sides of my hands. Not too attractive or comfortable, but the Bag Balm has a soothing effect. The typing is a bit slow, as the gloves are not very tactile. But I'm muddling through, and my hands feel much better.

Yesterday was an interesting day for me. I had my "easy chemo" in the morning and when I arrived, all of the private rooms were filled so I had to sit out in the large gathering room with about nine other patients who were receiving their chemo. It was a mixed group of mostly older men and women, but there were a couple of women who were probably in their 30's...much too young to be dealing with cancer. Some were talking with their family or friends, one couple played cribbage, and some napped while their loving spouse quietly watched over them. The kindness of the nurses and the tender loving care of family and friends in this room was beautiful to see. I felt very humbled, and thankful that I have a chemo regiman that is tolerable and a cancer that is curable.

I did have a small problem with my port, though. My nurse, Wendy, needed to draw blood from it before giving me my chemo and it wasn't cooperating. She was able to flush it with saline to clear it, but it wouldn't let her draw any blood out of it, so I was given Heperin, a blood thinner, to break down any clotting that may be in the port. After waiting the required 30 minutes, Wendy came back and tried again and it still wouldn't draw blood. Wendy asked another nurse to check the line and make sure I was "plugged in" correctly and she said I was, so Wendy gave me a stronger dose of Heperin, and I waited another 30 minutes before she could try again. And again, it wouldn't draw blood. So I asked her if maybe she should "unplug me" and then "plug me in" again to see if maybe the needle was angled funny, and she did. And guess what...it worked!! So she hooked me up to my chemo bag, and away I went.

The fortunate thing about all the extra time I spent waiting for my port to work, is that I took my knitting with me and was able to finish my vest! And as soon as I got home I stitched all the pieces together and tried it on and.....well, it's okay, but I wouldn't win any knitting awards! But at least I finished it, and with barely any yarn to spare.

Who's the redhead sitting next to me in the movie theater? (a blog by Rich)

That’s just one of many questions that I have had over the last few months. We all get so used to being with those close to us that we sometimes do not really look at them anymore. Well, looking at Marcia with no wig and Marcia with a red wig still is still getting my attention! I really think hair is over-rated...especially as more of mine goes down the bathroom drain each morning.

I seem to be getting more comfortable with the questions that go along with cancer treatment. What is the long-term prognosis? How will she deal with the cumulative effects of the chemo treatments? How will I be able to shave her head? Will I be able to show the girls the same humor and courage that Marcia does so effortlessly? When will life return to normal?

The answers to these questions and more seem to come to me as time goes on. A sense of humor, a deep and loving personal relationship, a strong belief system, and the support of friends and family have made this just another challenge to confront together. Thank you all for your part in supporting us in many ways. The cards, phone calls, food, kind and supportive comments, and other kindnesses help more than you know.

One question I get a lot is, ‘How are you doing?’ Well, I think I’m doing pretty well. On Valentine’s Day, however, I wasn't so sure. I got Marcia a gift and two cards. One was a funny Valentine’s Day card, the other was a birthday card (her birthday is in October). Perhaps I am not doing as well as I think.

Thanks again for all your love and support.