Sunday, August 18, 2013

Marking Milestones

Those of you that know me well know I love my birthday. Growing up in a big family we shared everything – bedrooms, bathrooms, toys, clothes – but your birthday was just yours. My mom always made a big sign and decorated the dining room where we ate all our meals. She always did this after you’d gone to sleep so you woke up and it was all for you. You got to choose what you wanted for meals that day and my mom always made great cakes.

As I have gotten older, I’ve decided birthdays are so great that in my family now we all get a week. Truth be told I’ve extended mine to a month since my birthday is in May, and so is Mother’s Day, and I am really into rounding up for things like this. J  With the girls I love making their birthday cake. I’m game for taking on any kind of cake they want. We always make homemade icing and decorate the cake together. They definitely are never mistaken for bakery cakes - they are heavy on icing in lots of bright colors, and in the case of Margaret, heavy on the sprinkles!!

With my big 1 year anniversary of my diagnosis of cancer and chemo coming up in October I wanted to do something, but it did not feel like a cake kind of occasion. So instead I am doing the opposite and have signed up to run the Cincinnati half marathon with Team in Training to raise money for the Leukemia and Lymphoma Society (LLS). I’m registered, I’ve started my training (which has felt awesome thanks to the unseasonably cool July nights we’ve had) and now I need your help. To really celebrate I want to raise a lot of money for leukemia research because that, along with blood and platelet donors, saved my life. I frequently think about the fact that if I had been born 40 years early there would have been no treatment options available and I would not be alive today.

Below is the link to my TNT fundraising website. Any amount you can give would be greatly appreciated. I know there are a lot of friends and family that have already donated to LLS on my behalf – thank you so much for this. If it is possible for LLS to become an organization you give to regularly and you are in a position to make another donation I would really appreciate your support.

From my runs so far I can tell I am definitely not going to be breaking any personal records on my time. I am hoping with your help I can cross the finish line on race day and make a difference in the fight against Leukemia.

Thursday, August 1, 2013

My reluctant return

I got to take almost 3 months off from going to the doctor. I have been feeling good and really got to put the cancer out of my mind. I cannot tell you how good that felt.
About 6 weeks ago I finally went back to my doctor to get my blood work checked. The appointment started off quite well.  When I arrived I told them I had a 9am appointment with my doctor and the receptionist started to show me to a conference room… I had to let him know I was a patient and they usually had me wait in the waiting room. I was dressed for work and looked more like I was there for work than treatment which was a good sign.
Unfortunately, once again, my blood work and how I feel, or look, are not totally in sync. My white blood cells were back down to put me back into the category of food and other restrictions. I was heading out of the country to visit my sister and her family. Luckily my doctor just loaded me up on antibiotics to take with me just in case and I got an appointment for my blood work upon return.
My trip and time with my sister, Margaret, and her family was great. Luckily there were no coughers next to me on the plane and I did not need any of the extra meds that I had with me. Not so great were my blood work results after I got back. I was feeling good and hoping for a rebound but my whites are still low and my platelets are down. We are still in the wait and watch mode, and the numbers could be bouncing around but it is a total bummer…. I was really hoping just to have this behind me and have another few stretches of only going to the doctor every 3 months.
So while I’ve appreciated all the support from everyone through this blog, I associated it with being sick. I really blocked it out while I had my time off but realizing this is something that will be around for the rest of my life….

Monday, April 8, 2013

"C is for ....."

"C is for Cookie that's good enough for me." I am 40, my children never got into Seaseme Street, and this is still the first thing that pops into my brain when I hear the letter "C". Yes, it is now followed quickly by Cancer as the big C in my life.

Did you know that in North America 5000 people a day are told that they have cancer and 1 and 3 people in their lifetime will get cancer? Whenever the word cancer comes up in conversations it is a big downer, but over 12 million people in the US are living with cancer....and luckily I am one of those.

I got great news from my bone marrow biopsy last week. I have less than 5% cancer in my marrow based on one test (TRAP stain) and less than 1% based on another test (flow cytometry). So no more chemo for me for now. I have to go back every 3 months for blood tests, and we watch and wait. I am feeling great just still some holdover chemo fatigue.

We asked my doctor what the protocol for the next round of chemo would be. He did not even want to speculate because there are some new drugs being tested that are getting good responses that could change everything. We did all agree that the cladribine was very toxic for me and we would not do a repeat round of that... so hopefully when the time comes for chemo again it will be outpatient and I will be in much better shape when I start.

Thanks to everyone for all your prayers and support!! It is great to be feeling good again.

Monday, February 18, 2013

Life vs Cancer

By my posts from the last month (or lack thereof ) you can tell that life is winning out of cancer which is very nice. I have been busy with work, the girls and family activities, and all that normal life is filled with. I am still thoroughly enjoying little things like going shopping, to restaurants, and over to friend's houses. I am also still much more tired than normal so I crash like a ton of bricks at night and am hard to rouse in the mornings.

This last week have finally been back to my doctor. He is in a swank new office and all my favorite nurses from the hospital are working now in his clinic so the visits are kind of fun (in a weird cancer / chemo way). I have had a bunch of tests over the last week and had a big doctors appointment today. The first words out of my doctor's mouth today were "your PET scan results rock".... better results came back than either of us expected. The PET scan was to see if there were tumors or anything else unusual going on. I thought it was a repeat of the CT scan I had when I was diagnosed but it was explained to me the PET scan is a metabolic scan where they dye they inject in you will go straight to any tumor or growth. It took much longer than I thought. First you get your glucose levels tested, then the inject you with dye and you lie still for an hour. Then you are taken into the machine where you lie still for another 30 minutes are so. The scan takes images in slices that are 3.3mm wide from your head down to the end of my abdomen. One of the reasons I love my doctor is that he not only explains things well but he explains them so I can understand them. He showed me the scan and talked through what he was looking for that was not there. My spleen was back to a normal size and the cysts they had picked up in the scan a few months ago did not show up. lIt is very good news that my PET scan came back totally "clean".

On the blood work side, my counts are about the same (i.e., hemoglobin good, platelets okay, whites still lagging behind but not dangerously low). We are waiting on a comprehensive red blood enzyme test to come back that will help rule out a few other potential complicating conditions. Otherwise we have the next bone marrow biopsy scheduled for end of March so I'll get the results of that early April.

So please truly assume no news is good news, and the next update on timing of round 2 of chemo vs Beth will be early April....

Monday, January 14, 2013

Apple Power Returns

I passed two huge milestones last week. I started back to work and also starting running again.

Last Wednesday was my first day back in the office. My kind, and thoughtful, work group had decorated my desk with signs and orange streamers and balloons. The decorations were orange which is the official leukemia color (like pink is breast cancer every cancer has a different color - who knew...). They also gave me a standing ovation as I walked onto the floor. With each step I took my face got progressively redder until I was a nice bright crimson.

Those of you that have known me for awhile know that I have a long history of blushing. In fifth grade, my class had assigned seats at lunch where we were alternated boy-girl-boy-girl. At lunch, the boys that sat next to me liked to see how fast they could make me blush and they called it "apple power". Many years later, after my first assignment on Pringles at P&G, one of my going away gifts was a can of original Pringles (which comes in a red can) with Mr. Pringles face colored in red. My ability to blush had not gone unnoticed!

I realized enough people have commented on my red face over the last week as people have said nice things that my blood levels over the last year plus must have seriously curtailed my blushing, but it is back!!

My other milestone activity from the last week has also been turning my face red since I am both old and out of shape. Each run I have done has felt a little better. My "longest" run has been 3 miles. I am hoping to get back up to 4-5 miles a run soon and then can work on getting my speed back. (Mom, I promise not to push myself too much or go too fast.)

In addition to my return to work and running adding color to my face, these new activities have been making me tired. Luckily the girls and Chad have been very good about letting me get sleep.  Today felt easier than any day last week so hopefully every week I will feel a bit better.

Monday, January 7, 2013

Car Talk

This will be nothing like NPR’s Car Talk Show. When my sisters and I turned 16, before we got the “license to the car” after we got our driver’s license, one of our parents took us down to the other end of our street and made us change the tire on the car. Thanks to being female, and a firm believer in the benefits of a AAA membership, that is the only time I have ever changed a tire. So I am not even qualified to call into the esteemed Car Talk Radio Show.

This post should probably be called car conversations. Growing up my mother always knew she had a captive audience in the car and that is when we got all the talks. Our children, being as precocious as they are, have figured out the benefits of having a captive audience in the car already. Lately it has been taking the form of telling us riddles.

In case you have gatherings coming up where you are looking for something to say, or to lighten the mood, I will share a few. Warning: use at your own risk. They are most effective with an elementary age audience (or with the young at heart).
Riddles (answers below)
1) What has a room that you cannot go in?
2) What does "t_rn" mean? (read as "t-blank-r-n")
3) How do you make seven even?
4) What room can ghosts not go into?
5) What has fingers but no bones?

So had a big round of doctor's appointments today. I am feeling like a bit of a riddle. My hemoglobin was up, my platelets were flat but my white blood cells and neturophils were down a lot. Despite that my doctor cleared me to go back to work. Early February I will have a lot more tests then in March/April the bone marrow biopsy will be redone to see if the cancer is in total, or partial, remission. Until then am going to work on resuming life as normal. I have been bad over the holidays on blogging and expect it to get worse and move to something more like once, or twice, a month!

Hope 2013 is off to a good start for everyone.
1) A mushroom
2) No u-turn
3) Drop the "s"
4) The living room
5) A glove

Snow Sledding, Skiing, and Shoveling

We just missed having a white Christmas by a day. As Margaret said though, it has been a white Kwanzaa.  This is the first snow the girls remember seeing coming down. We went to Harbin, China, a few years ago to see the famed ice sculptures and we got in some ice sledding, a trip to the ice bar for hot chocolates, and a few (yes, a few) trips to the Tiger Park. There was lots of ice but no snow coming down.

They have been so excited to wake up and see what it looks like each morning. The girls have been catching snowflakes on their tongues. They have been doing experiments to see if dirty or clean snow melt faster. They have tried sledding in the front yard, the back yard, and at the park up the street, Mt. Storm. We drove up to Mt. Storm the other day and there was a “Road Closed” sign halfway across the road. We decided to forge on and were glad to see the parking lot was packed. Our neighborhood clearly decided it needed to be open because the sledding hills there totally rock (yes, I stole the girls sleds and did a few runs and proved the more you weigh the faster you go).
We went to meet up with my sister, Robin’s family, and parents at Wisp Resort. The cousins are great skiers and sold Katherine and Margaret on trying it. Chad skied for the first time in 10 years. I sat this round out and just got the girls situated in ski school. I am working to get strong enough to ski when we head to see Chad’s dad, and very nice stepmother, in Breckenridge.
I spent a fair amount of time in the lodge listening and watching to the others at the resort. What I have seen is that the happiest adults are those "sans" children. Those with kids the ages of mine are snappish and frustrated. There kids are sullen and snappish. Really makes me feel so much better. Katherine and Margaret were excited about trying skiing. At the time of drop off at Ski School Margaret was still excited but Katherine was overwhelmed by the crowd and commotion, and was very decidedly not excited. After clinging, tears, and my direction to her that she would have to pay us back for the day if she did not try it she drug her feet in reluctantly. After 30 minutes I got the call she would not talk to anyone. I came in, we talked, and then I helped her get boots and skis and the event was reset. She was also helped by getting outside and no longer roasting to death in her gear in the ski school room.  It was a painful morning.

In contrast to ski morning, Katherine got her ears pierced last Sunday as her 10th birthday present from Chad and me. You could tell she was nervous but she knew she wanted to get them pierced. We went to Claire’s. She quickly chose her earrings, hopped up in the chair and she barely flinched when they pierced her ears. Chad and I on the other hand were choking back the tears that our baby had earrings and looks so much older (at least to us). She has totally taken care of them and been so responsible and mature. I guess the difference she has been wanting to do this and while she has been excited about skiing when we have talked about it, we are the ones that wanted her to try it (but still really hope she likes it sine the rest of us like it!).

We have had some growing pains at the Withers but aside from that are mostly feeling good. I am feeling stronger and doing a bit more each day. I have something funky going on with my right arm and is hard for me to pick up things and have shooting pains if I try to grasp things like an iron, or juicing a lemon, or anything like that. I am definitely feeling more and more like myself and less and less like someone with cancer. All and all a good Christmas present and a great way to start the new year.