Doing absolutely nothing

Good morning. I'm going to use this blog today as a vehicle to complain a little. I've tried very hard not to complain about anything that has happened to me during these past 27 months - because I know how blessed I truly am. My kind of cancer had the most promising outcome due to the treatment choices that I made and could make because of having the luxury of so many top doctors and facilities at my fingertips. My baby was and is healthy because of the options I had with my care and his in utero. I am surrounded by loving and supportive family and friends. I'm one of the lucky ones.

Today, I am in pain and I need to complain. From my laproscopic hysterectomy last week, I have three incisions on my abdomen ranging in size from one centimeter to one inch. My right incision, which is the one-incher, hurts so much that all I can do is take my Percocet, Motrin and Colace (gotta take a stool softener when you take pain meds for a long time), lay in bed with my heating pad and wait to go to sleep.

All the wonderful medical professionals in my life were so encouraging about my getting the hysterectomy. They said that it was in my best interest for a woman my age after what I've been through to completely eliminate my risk of getting cancer in my reproductive organs. They told me that I was through having babies because of my age, lasting chemotherapy effects on my eggs, the Tamoxifen - not to mention the challenges of miscarriages and fertility treatments we have had since we began in 1999 trying to have children. My dear doctors said that the worst surgeries and recoveries were behind me; this one was not a big deal compared with the others. They said to plan for four weeks of recovery DOING ABSOLUTELY NOTHING. Well, that sounded like a vacation for me! Surely, they couldn't mean that I could do absolutely nothing for four weeks - no grocery shopping, no gardening, no laundry (if it means lifting heavier than a gallon of milk), no cleaning out and organizing, etc. AND ABSOLUTELY NO LIFTING PATRICK OR RISK GETTING A HERNIA! OK. Got that message LOUD and CLEAR. So maybe it means that I can work on organizing my photo albums - a project I last visited when I was pregnant with Patrick only getting as far as dividing thousands of photos and negatives into boxes broken down by years going all the way back to 1988. So that's 20 solid years of photos - thankfully, everything since 2008, I stopped printing all my photos and have been filing them on our computer. Now I just have to create those digital photo books. Organizing my precious photos has been weighing on me for years and I know have this gift of time to do just that.

Together with my dear mother-in-law, we made arrangements for the care of the kids for four weeks. Of course, Patrick is the one that needs constant help and supervision. I made a schedule for the first week that included all of Georgia's extracurricular activities and listed the things she needed to do. Patrick's schedule was pretty simple: eat, sleep and play. And stay safe. Jane arranged for a family friend who just returned home from college to help out as needed. In my mind, I thought for sure that the kids could come home after my first few days home where I completely followed the doctor's orders (and my husband's). So I slept a lot and stayed in bed reading and watching reality tv. I left the house for an hour on Saturday to see my kids at the annual spring carnival at the Church of the Holy Spirit. Exhausted, I returned home to my beloved heating pad and bed to nap for six hours. I missed a surprise party that night for my close friend's 40th birthday. I was so disappointed with myself that I didn't feel better yet when I was the perfect patient and followed all my hospital discharge instructions.

On Monday, we had a perfect sunny day in the upper 70's - a sharp contrast to the miserable cold, wet spring days we've had for many weeks. I decided that I was going to will myself to feel good (mind over matter, right?) and not spend the day inside and especially in bed. So I didn't. Most of the day, I sat outside, resting and reading on my outdoor furniture, appreciating the flowers and vegetables that my husband had planted the day before, because I couldn't. What a difference to hear the sounds around me of people enjoying the weather. The smells of grilling, spring blooms and grass being cut made me feel better. This was just what the doctor ordered!

I didn't nap on Monday and had P.J. bring Patrick home at 6 p.m. to sleep at home with us for the first time in a week. Patrick had already had his dinner and bath and was ready for me to love on him very carefully. I sat on the floor with my arms opened trying to get him to come hug me. He wouldn't. He's mad at me that I've been away from him, out of our routine. Patrick's my buddy, my shadow. Most days, I can't wait for P.J. to take Georgia to school so that Patrick and I can have the house to ourselves. At least Patrick won't remember this time when I couldn't take care of him, everyone says. But I remember, I think. Finally after letting Patrick warm up to me for 30 minutes while I play with his favorite cars, he gives me a hug and I get him to snuggle into my arms long enough to cover him with kisses.

Patrick sleeps well at home that night - from 7 p.m. - 6 a.m. We play more and I make him breakfast until he leaves with P.J. at 9 a.m. to go back to GoGo's house for the day. I think to myself "this is the best!" My days are free to work on my photos, nap when needed, take it easy. I get my baby in the evening and morning when I can be fresh and not distracted by anything else. Then I had a cold, rainy Tuesday with gradual increase of pain and drained of energy. All I could do was go to bed. After watching Oprah's next to the last show, I turned off the tv and slept from 10 a.m. until 3 p.m. I couldn't believe it. My breast cancer big sister Susanne stopped over to check on me and I told her about my pain and exhaustion. She had also done this same surgery three years prior and she said this is normal. Since Susanne is also an accomplished vascular surgeon, I have extra confidence in her. She looked at my bandaged incisions and reassured me that I will be fine but that I have to do ABSOLUTELY NOTHING. I told her that I was doing nothing and she questioned me which made me think harder. I realized that while enjoying the weather on Monday, that I had actually pulled some weeds and cleaned out my little fairy garden that is planted in an old galvanized steel washed tub. Hardly, heavy lifting, given how I normally work outside; but obviously enough to kick my butt.

O.K. I get it now. Yesterday wasn't any better. As soon as our sweet cleaning lady could change the sheets on my bed, I was back in it and stayed there until 1:30 p.m. I made myself get up so that I would be able to sleep at night. By 2 p.m., I was burrowed into the sofa in front of my big tv in the sitting room of my kitchen watching Martha Stewart, Nate Berkus, All My Children (let me say how sad I am that it's going off the air this fall) and Extra. This is a luxury that I could not afford if Patrick were under my care. I guess I need to surrender, relax and enjoy. I can't sit still for long.

Today is cold (44 degrees), wet (think we must have gotten 3+ inches of rain in the past 24 hours) and windy. Since our addition was completed two years ago, we've noticed the wind more than ever as it howls around our house year-round. Could it be the aerodynamics changed so much with the addition that it has more area to travel? I digress. Anyway, I am back in bed (you guessed it) with my heating pad. Don't know what to watch on tv now that Oprah's off the air - so that's why I'm writing this. And it has made me feel much better! Time for a nap!

Random things to share

I'm still recovering from a big night last night. My awesome book club friends and breast cancer "big sister" Susanne held a celebration dinner for our miracle baby. For all practical purposes, it was a couples baby shower with a sit-down dinner for 50. It was an amazing evening where P.J. and I were surrounded by some of our closest friends who have been there for us every step of the way during this amazing journey. We were overwhelmed by the generosity of our friends showering us with fabulous (and frivolous) gifts for our baby boy and touched by all the kind words of support and love. Many of us were in tears when we weren't laughing our fannies off. Good times that I'll never forget.

My dear Great Aunt Margaret passed away on September 11. We are all relieved that she didn't suffer long from her kidney failure. That was my last day of chemo (before the baby is born). My cousin Anna called to share the news while I was having a non-stress test at Maternal-Fetal Medicine. Fortunately, I sent her call into voice mail which I picked up later and then had my cry fest. Aunt Margaret's cynicism and humor will be greatly missed.

The same night Aunt Margaret died, I put my exhausted self to bed early at 6 p.m. while P.J. took Georgia to a family dinner for the Kevin Gorter Memorial Golf Outing. During the dinner, they bought three raffle tickets for door prizes. P.J. put a ticket in each of our names. Ironically, my name was drawn and I (we) won a MacBook computer. Georgia claimed it and ran off. We're still fighting over it. I NEVER win anything.

At Georgia's first soccer game of the season, her coach's wife who is my former OBGYN approached me immediately and asked if it was uncomfortable for me to be there with her after what had happened between us at the beginning of my breast cancer diagnosis and pregnancy. I told her that I wasn't uncomfortable with her, but was glad we had a chance to be together so we could talk. I caught her up on my health and told her that if she ever comes across another patient in my situation that she please will treat them differently and refer them to M.D. Anderson and Evanston/Northshore Maternal-Fetal Medicine. She expressed her feelings about me and my situation saying that she is thrilled that it is all working out. I thanked her for insisting I have early mammograms that may have saved my life. It's all good now. I can comfortably spend the rest of the soccer season sitting with her beside the field.

Georgia announced to P.J. and me yesterday in all seriousness that she is a vampire-in-training. What?! She explained how it happened when she was in the north Georgia mountains this summer when she supposedly was bit on the neck by a bat. She went into great detail about how her fangs haven't come in yet and that she still was a girl that could be outside during the day and didn't have to drink blood, but could just have red Gatorade. We were cracking up, but she was so serious and has kept this up even today. Hmmmmm ... makes me wonder if there is any truth to this! (just kidding)

Thank you to the Cancer Warriors organization in my hometown of Griffin, Georgia. They have been praying for my recovery and for my family, sending me notes of encouragement, and a wonderful care package. They even organized a large group to ride their motorcycles to Warm Springs and back and a cyclist wore my name on his wrist band. It is heartwarming to have people you don't know do things like this for you.

I had a huge burst of energy this past Friday and baked eight pecan pies. Never in my life have I baked so many at once. I was on a roll. They were for the hosts of the party on Saturday night. It was actually very enjoyable. What fun to bake in my new oven!

My cradle cap is gross. I can't stop scratching it and making it snow. Ahhhh, the joys of losing your hair.

Those are all my random thoughts for tonight. It's past time for bed. I'll be in touch when I have something interesting to share.

Take care!
Love,
Jana

So much to say!

What is my problem? Why can't I blog regularly? I guess it's just not my thing. I want to write and share everything, but then days pass and I cannot make myself sit down at the computer to write. I'll talk to anyone all day long - family, friends, strangers. I sometimes feel like I can say things to people that I wouldn't write down. Does anyone else ever feel like that?

Anyway - I'm writing now. It's a chilly, rainy day in Lake Forest. I'm at the public library because my new computer hasn't been working properly. P.J. plans to return it tomorrow and talk computer talk directly with the sales people and get me something else. He shouldn't have sent me on my own to buy a computer since I really don't have a good idea of how they work, etc. Our 8-year-old daughter seems to know more than I do about computers. Scary.

Back to writing ... I'm just getting warmed up. I promised before I had some observations to share. I've been writing them in a pretty notebook my friend Angela gave me (the old pen and paper technology never fails!). Here goes:

• Since I began chemotherapy, I've been waiting to lose all my hair. I've been dreading it and trying to deal with my feelings about it. It seriously began happening after my second round of chemo - approx. 30 days from my first round of chemo. I thought I was ready. I had already cut 10 inches off my hair and given it to Locks of Love. My dear book club friends brought photos of their worst haircuts to my salon and had them waiting at my stylist's station with some sweet treats. That went well. Then I started collecting hats and scarves. Maureen went shopping with me and we laughed so hard we were in tears - especially when she tried on a "do rag" that was already sewn with elastic to slip onto your head. That went well, too. Then my friend Susanne brought me a beautiful wig made of human hair, lovingly highlighted and very similar to mine. It was Mary Kay's custom wig that she only wore once during her battle with breast cancer. I have not brought myself to ever try it on. It did look good on Susanne, though. One night at dinner at Mary Ellen's, she asked if she pulled my hair, would a handful come out. I gave in and let her try and it didn't come out. Then the next day came and I actually lost major handfuls of hair, the tears finally came, too. I saved my hair from going down the shower drain and kept collecting it for days. Once it is no longer on your head, it doesn't feel like real hair. P.J. and Georgia thought my hair collection was disgusting so I finally tossed it when I realized how silly it was to keep. I haven't cried about my hair since then. Even though I now wear scarves and hats, I almost always show my friends and family my real head underneath. My doctors and nurses are astonished that I even have the hair that's left. I think it's just the prenatal vitamins at work.
• When your hair goes, why do the grays stubbornly hang on? How unfair is that?!?
• One of my morning rituals is to inspect my pillow for lost hair and to use a sticky lent roller to clean it up.
• Also on the subject of my hair, I was embarrassed on July 15 when at the intersection in front of Miramar in Highwood when my hat blew off. Cars were stopped at all four places and I had to chase my hat in front of all those drivers. Who knows what they were thinking - big pregnant lady with crazy thinning hair scrambling around amongst the cars. Lovely.
• When I have chemo or my weekly blood draws, I almost always see the beige lady. Consistently, I am the youngest patient at my oncologist's office and most are in their 60's-80's. There is one patient, who my heart goes out to, who is colorless ... her skin is transluscent, she is bald, eyelashless and eyebrowless, extremely thin and always wears beige clothes, shoes and ball cap that even washes her out more. We are never close enough to speak and the scene in the chemo room is of about 18 chairs with a nurses station in the middle. The patients interact with the staff but generally not with each other. Everyone keeps to themself during their treatments and is respectful of each other as many recline in the chairs and cover up with blankets. Of course, I can't do that. I have to much to on my "to do list" so I try to bring a mini project to complete, like a photo album or notes to write. The poor beige lady is an extreme case of the type of patients there - but she makes me feel sad. I want to give her a hot pink top to wear and some coral lipstick to brighten her up. I think she feels as badly on the inside as she appears to feel on the outside. Bless her heart.
• I keep waiting to feel as bad as the beige lady or as others who have been through this before. I don't. Naturally, I have my moments of pure exhaustion - I am afterall 27 weeks pregnant. Overall, I feel great! I am the happiest I have been in a years! I have a new lease on life and my prognosis is promising. I am one of the lucky ones and I thank God every day for that.
• The other day, I looked at my chart at Maternal Fetal Medicine. The summary of my condition (other than being pregnant) was "elderly with breast cancer." What?! Since when was 40 considered elderly?!? You would have thought I was that sixty-something year-old woman who had IVF and carried twins. Right. Elderly. How about classifying me as "35+" or something less insulting?
• Last Friday, the Beaupre's brought dinner over while they were visiting from Atlanta. About an hour into their visit and long after P.J. had given them the tour of our remodeled house, I mentioned something about the baby coming in October. April and Paul were shocked. They had no idea I was pregnant even though I'm clearly showing and had seen the baby's room filled with the crib and all kinds of baby things. They were so polite not to say anything about my appearance and just thought I was bloated from the treatments. I loved being able to share with them our good news in person.

I ran into my wonderful oncologist and his wife at the Lake Forest Day carnival on Family Night (Tuesday). There were thousands of people there and the crowds were so dense. It was fun to see him outside the office - usually P.J. runs into him out and about. Anyway - Dr. Tsarwhas immediately told me I needed to go home. I obeyed and happily left Georgia under P.J.'s watchful eye. The next day, I took Georgia and friend Kirsten to the LF Day Parade to ride on the Lake Forest Country Day School float and ended up walking with them the entire parade route. Not my plan, it just happened. The last thing I thought I wanted to do was parade through downtown - but I did and it was fine. We spent the afternoon at the carnival with many school friends and moms. It was such joy to watch the children run around having the time of their lives!

Tomorrow, Georgia's favorite 2nd grade teachers, Ms. Huetteman and Ms. Holland, are joining us for a special lunch at GoGo's house. To say that Georgia is excited is an understatement. These teachers have been very special to our family, even more so since all this cancer stuff began. We are grateful for their continued friendship and support.

I think the rain has stopped now, so I'm going to head home. It was actually fun writing today. Thanks for being patient with my ramblings. I will try to write more often. Until next time, take good care!

Love,

Jana