10 04 / 2013
October 2, 2013
October used to mean Orange and Black. Now it feels more like Pink.
With Breast Cancer awareness month (Steve calls it “Breast Cancer Industry Awareness Month”) upon us, I can see that while the pink-washing does raise awareness (and it is really nice to be able to say breast cancer aloud without people snickering at the word breast or shying from the word cancer), it also promotes companies that are doing nothing to help breast cancer except re-packaging their products and making a donation to the cause. Not only are some of these donations skimpy compared to amount of profits generated by people rushing to buy pink, but the products themselves — fast-food, chemical laden cosmetics, drinking water in carcinogenic bottles — may be contributing the risk of getting breast cancer.
The other suspect side is where does that money actually go? About 90% of the money spent on breast cancer goes to fund mammograms and awareness campaigns. Less than 10% goes to any research on metastatic breast cancer which is the only way breast cancer can kill you. While I’m all for yearly screenings, I do believe that many of the small DCIS cancers found with our current technology would never have grown into anything dangerous. The women diagnosed with these cancers will spend the rest of their lives worried for nothing — and current findings are that mammograms are NOT saving lives — they are just finding cancer earlier so women can be scared longer.
Of course, in my case, I wish we had found it sooner so who can say what is best. On the personal front…
I had the Zometa (for osteoporosis) infusion about 3 weeks ago. The pamphlet and on-line side effects said flu-like symptoms and bone pain. Well…it was more like having been run over by a truck. The first night it hurt so much just to take a breath that I actually thought maybe it was my heart, but then I knew a heart attack would not last for hours! If I had never had the Nulasta shots (which I got after each chemo to keep up the white blood count and which also caused bone pain) I would have been totally shocked that my bones could ache like this… or that this was what bone pain felt like. I’m supposed to get this infusion every 6 months but I am not looking forward to another dose.
I’ve been researching some alternative choices and one new drug approved in Europe (but not here yet) actually stops the Estrogen production AND helps the Osteoporosis. It’s called Bazedoxifene and I’m hoping to find a trial or (even better) for the drug to be approved here.
(I’m going to hop on my soapbox here for a paragraph which you can skip if you want)
Of course, we are so quick to blame the pharmaceutical companies for ANY complications. I want to point out that the big pharma is both the people in that field trying to change the course of medicine AND shareholders like me that invest in them with the faith that they will make money doing so. Because of strict U.S. testing requirements, it makes it much harder to get new drugs approved in the US than in Europe. I can see that is a good protective measure for US citizens. On the other hand, it also means that the newest, latest treatments available for many diseases are not available in the U.S. until years after they have been used successfully in Europe. For all of us, every time we take a pill for anything (even a Tylenol), we take a risk. We weigh that risk (slight for Tylenol, huge for chemo) against the possible outcome. Then you add in the side effects (no more headache for the Tylenol a positive side effect which is why the risk is so tiny) and decide with your oncologist (or other doctor) if you think this is the best choice for you at this time. It is just frustrating to know there is a better (probably) drug out there but my doctors and I can’t even consider it an option as there is no effective way to fast-track an effective drug, especially if competing companies have an interest in dragging it out.
On another health front, I returned to my back doctor since my back has been hurting again and I thought it was time to see what was going on. I really love to hike and I find that I can’t walk as fast or as far as I would like. I’m willing to see what my options are (see above paragraph! ) I had my back fusion about 4 years ago and what frequently happens is that once you fuse two vertebra, the vertebra above and below the fusion show more wear and tear. The doctor said that your body is always working to stay upright. Once two vertebra are fused, your spine can not bend in that spot. In order to stay balanced my neck and the rest of my spine work harder, often causing either the fusion to break (mine was fine) or the vertebra above or below to give until they are then out of alignment (which is why I had the fusion to begin with.) As usual in the medical world, we fix one problem but that treatment often causes another down the line. We took X-Rays and even my untrained eye could see that the vertebra above my fusion are now tipped and touching and probably catching some nerves which is causing my pain. I have an MRI this week and then we will discuss options.
On the good news front, I asked and the X-rays would have shown a bone tumor and that all looked clean!
Colonoscopy this coming Wednesday. Dreading drinking that stuff so I will be glad when the whole thing is over and I can say what a sissy I was being so anxious about this!
In my spare time, between doctor appointments (boy does that make me sound old), one the things I’ve been doing is training Pixel to be a therapy dog. We are in two classes now and she gets tested on Oct. 20. If we pass, we will do the Reading Buddies Program where we go to schools and let the kids with trouble reading, read to Pixel! (Steve says she’s smart enough, that we should probably train her not to read ahead.)
She is so adorable and has the sweetest personality, I know she will make an awesome therapy dog. As I can attest to personally, it’s hard to feel sad or anxious when you are petting a puppy. And nothing will make me feel better and think less about myself, than helping someone else.
I’ve also been painting. Here are a few more photos of some recent ones, in some cases the whole painting, in others I’ve just photographed a piece to show the detail.
This series is called caffeine. The materials are watercolors, India Ink, and Coffee!
This series is called Slugs in the Rain. I was painting outside and forgot to bring the paper inside until about 11PM. When I got the paper off the lawn both sides had little slugs that I (ewww) had to pick off!
This one is called purple sky…for lack of a better title.
And this one is Gold River
Last is the colored map series…
As for the rest of my family…
Steve’s dad is not doing great so Steve will be heading to Florida soon for a week or two. I know he is torn between wanting to be there and knowing that once there, it will be hard to leave his brothers to deal with everything again.
Max has been traveling across the country, speaking at gaming conventions, meeting some of the creators of his favorite games (not just meeting but speaking on a panel with them and having dinner after), and loving every minute. Here is a link to one of the newest articles about CAH.
Ross continues to deliver for Pierro’s (you can ask for him when you order) but he is also picking up almost continuous jobs house sitting for dogs and cats while their owners are away. On top of that, he is still baking for private parties.
Steve and I continue to slowly work our way through the house, getting rid of 25 years of stuff. It’s a slow process even for me and I”m a good sorter and not particularly attached to things. For Steve, it’s torture. I’ve told him if he doesn’t clean his office before he leaves for Florida, I’m going to do that while he is gone. I’m not sure if that would be a relief or if he would kill me when he got home — probably a bit of both.
Love to all of you,
Write me back…
9 15 / 2013
Sticks and Stones will Break my Bones — or is it the Arimidex?
September 15, 2013
La Shana Tova. Happy and Healthy New Year.
It’s rainy and chilly today but was so sunny just two days ago that even the sunflower needed sunglasses!
It’s been so long since I’ve written an update, I thought it was time to share my most recent news.
Most important, Pixel is fine and wonderful as always. As I said to one of my doctors, “Its really hard to feel sad when you are holding a puppy. You should prescribe one for all patients.
On the breast cancer front…
I’ve been taking Arimidex which stops the production of estrogen because my breast cancer was estrogen positive, meaning it needs estrogen to grow. I just had a new bone density test and now I have post menopausal (Arimidex induced) osteoporosis. Just as older women (I guess that’s me too) stop producing estrogen and that causes their bones to weaken, the Arimidex has sped up that process in me and I’ve gone from fine a year ago to bad now. Tomorrow (Monday) I have to get an infusion of Zometa, a drug they use to control/help the osteoporosis. I am NOT looking forward to entering that chemo dungeon again, especially since now I am port-less and we will have to use a vein.
It’s a little frustrating to think I am starting down that path of one drug to fix a problem but that causes a new problem which they try to fix with another drug but that causes a new problem which they try to fix with another drug but that ….
Case in point, I’m sure I mentioned in a blog that Steve’s mom died in April. Well his dad, who was treated for lung cancer about 7 years ago, now has leukemia (probably caused by the chemo for the lung cancer) which is not curable. You all do know that chemo causes cancer too right? Screws up all the cells, kills the bad ones but harms others too which can then mutate. You’re lucky to get rid of today’s cancer, but you might be signing up for future cancer. I try not to think about that since nothing i can do about it but of course I don’t forget either.
In addition to tomorrow’s infusion, I signed up for my first colonoscopy in a few weeks. Everyone says its easy and I’ll have no trouble with the prep but I HATE drinking anything and this is 6oz of yuck mixed with 10oz of water followed by 32oz of water at 10PM and then again at 4AM. I don’t think I drink 96oz of liquid in a week! Funny that I survived chemo but am terrified of a colonoscopy.
I’ve been using all the tricks I know to stay calm and in the moment.
Probably the best escape for me (other than holding Pixel) is to do something creative…there is no way to create and NOT focus on that.
For the first time ever, I’ve been painting. I’m always inspired by nature, shapes, color. Mostly they are watercolors which I then draw on with markers or pastels. Anyone who wants to come over and critique them is welcome!
This one is two panels. India Ink, metallic silver watercolor, brown watercolor, oil pastels.
Close up from one of the panels (sideways)
Copper, Brown, Black and White Pen
Close up from above painting
Another close up
Two Panels (hanging with clothespins)
Somehow a bunch of paintings are sweet and beautiful nature and then I need to draw big dark mean building shapes and wires.
Africa? A Heart? A Map?
Well…having fun anyway and like I said, if you want to come over and critique them, I’m looking for advice/opinions/comments. I’ve been painting on large 25”X38” Coated Cover Stock. Wondering if anyone knows what I should do to protect or mount these.
Getting colder today, and rainy too. Makes me realize that summer is past and autumn is rushing in.
Here are some rainy day photos I took on my walk with Pixel today. You can see how they influence my paintings.
raindrops on dead pine needles
fading leaf with spikes
green bug eyes
tree bark with fungus
You can see how nature inspires my paintings. I’m always looking for the unusual. In nature and in people. I like the beautiful easy parts but I’m really attracted to the spiky, more interesting characteristics. I always say art (and life) is boring without a little tension.
I’ll be happy with tomorrow behind me and a little bit less tension in me!
Here’s hoping for stress-free weeks ahead for me and you.
6 03 / 2013
Happy Birthday to Me
June 3, 2013
I know I have not written an update in quite a while but really there is only good news and regular life to report. It’s amazing that when I was in active treatment, the cancer was all I could think about, but now life is mostly back to normal and I focus more on everyday things. Which means that while I’m not as consumed by cancer thoughts, once again, a sink of dirty dishes drives me crazy! I had a CAT scan about 2 weeks ago and met with my oncologist yesterday. Got the all-clear from both for 3-4 months.
Not that the all-clear makes me feel safe. In my head, it just means those little monsters are still hiding and we can’t see them yet. I think I’m afraid to believe that I am really safe — one, I know I’m not, and never will be, at least not in the way I always felt before — and two, I think I’m always trying to prepare myself for that occasion, just in case. In some ways the further I get from my treatment the better I feel that the treatment worked. In other ways I worry that the treatment just scared those little buggers and they are hiding out until the time is ripe —
So while I’m thrilled to have the all-clear and another year, there is also a part of me that thinks, “Wow, I’m already 2 years in — how many more cancer-free years will there be?” And how will I ever face it when it the cancer shows up again? When my mind starts down that path I just force myself to turn that thought off and go somewhere else. There is just no point in freaking out until that day comes. I remind myself that if I worry all the time, I just let the cancer win today. And if my days are indeed numbered, I aim to fill each one that I have with things that I enjoy.
I’ve been seeing Ruth less often, maybe every 3-4 weeks, but I also find it really comforting that Ruth will be here to help me figure out how to live with any future diagnosis as well. I know it sounds crazy, but I like it that she acknowledges that my fears are not unfounded.
My 56th birthday was a few days ago and I celebrated these good results as well as another year. Actually I had a birthday week!
A BIG thank you to my friends and family: for all the birthday wishes yes, but mostly for making my life so rich over the past year, filled with dinners, lunches, coffee, dog dates, phone calls, emails, texts, Facebook comments, talking, walking, laughing, crying, talking about our hopes and dreams and fears and worries and favorite TV shows — all the ways in which I share my life with you, and you share yours with me. If nothing else, the cancer (and the realization that I really do have to make each day count) has taught me more than ever that what really matters are my family and friends, those who support me not just on my birthday, but everyday. That’s you.
I do have to admit that the all-day Facebook (and email and text and phone) birthday wishes were really fun and did make me feel great. I know it’s just a click of a button, and many of the wishers are HS friends who I haven’t seen in years, but it was nice to know people were thinking about me! Shallow, I know, but it still felt good to get those “notifications” all day long and into the next day.
Steve made me a sweet, heart-filled breakfast.
We had lunch at my cousin’s lake house which is so fabulous, filled with windows looking over the lake and a wonderful deck with two levels, and a brand new dock and boat. The indoor wall are filled with nature photos taken on their vacations along with a clever display of various old cameras. Pixel loved it too.
Months ago I bought “Book of Mormon” tickets for Steve and I and the boys. We all met at Max’s office where he had a town car pick us up and take us to dinner at an awesome Asian restaurant. From there we walked to the theater where we had 4th row center seats, close enough to see them spit at each other! I figured with all the hype, the play wouldn’t really hold up — and I’m not really a huge fan of Family Guy or South Park; I call those fart joke shows — but the play was awesome and we all loved it. Afterwards, there was another car to whisk us back. Although those town cars were a little ostentatious they were really fun and made the night extra special. Max remembered that I was interested in a jawbone — one of those bracelets that tracks your fitness and sleep. It’s nice to know he’s able to afford a gift like that, but even nicer to think that he made the effort. An evening with both my thoughtful sons was a real highlight.
On my actual birthday, I got a 2 hour massage and some friends took us out to a fabulous restaurant in Lake Bluff where we sat outside (it was body temp), ate amazing food, then took a nice walk thru the neighborhood and town. Perfect.
One of my friends took me shopping for a gift. When I got home, it started up the old argument about what a present is. Steve insists that a present means showing your appreciation of someone by putting thought and effort into getting something special that the other person would really like and presenting unexpectedly. In my family, we take each other shopping, or as Steve sums up in three words, “they write checks.” He hates it when I want to return his gift for another color or item, but I think a present should be what you want and not what the other person thinks you should want or about keeping something you don’t want. (I am talking about family gifts, not little friend gifts.) In my opinion, that makes it about them, not you. In Steve’s opinion, I’m just a horrible gift-accepter.
Interesting, my friend also bought me a surprise gift… one I like even more than the one I picked for myself.
Steve bought me a wonderful gift of some overpriced but awesome earrings I’ve wanted for a while but couldn’t spend the money to buy for myself. In my opinion, THAT was the Perfect Gift! Thanks, Steve.
I know Mother’s Day was a while ago, but on my Mother’s Day, Ross came early, did the shopping, made a fabulous brunch, brought me sunflowers (my favorite!), and cleaned up after.
Ross also baked gluten-free desserts for a party. They were so delicious, and beautiful.
I’m so proud of both of my boys. It’s fun to watch them as adults, to see which of our traits each of them has, to see how they behave, how they treat others, how they treat Steve and I, what they hope to accomplish to make themselves happy. I’m grateful for the parts of their lives and the time that they share with me.
Another night we spent with my cousins and my Dad (while his wife was out of town). Steve stayed with my dad for 5 nights and was so very sweet. I would say,” are you coming home” (at noon) and he would say, “I’m just going to stay to settle your dad in for his nap”. That would make my heart melt. Thanks, Steve.
On Memorial Day my Dad was the featured speaker at the Lake Forest /Lake Bluff Celebration. Here he is in his uniform!
His speech was mostly about the fact that our freedom wasn’t and isn’t really free. I am grateful for the freedom I have thanks to the battles our soldiers have and continue to fight. Another blogger wrote about the word brave in connection with fighting cancer, a word many of us feel we didn’t really earn since there is not so much bravery in doing what you have no choice about. She explained it as the difference between choosing to go to war (bravery) and submitting to chemo hoping it will prolong life. I am no hero for surviving cancer treatment.
If anything, the bravest thing I do is write this blog and share my thoughts aloud. I write it for me, but I hope it might also help someone else. If you know anyone you think this might help, please feel free to share. If you or someone you know might like to be on my distribution list, just send me their e-mail!
P.S. As always, I am grateful for the stories and sharing with my friends, which is what I think we all want the most from one another. So stay in touch and share your life with me.
PPS: Pixel has her own Facebook page. “Like” it to see what she’s up to day to day.
3 27 / 2013
March 26, 2013
I know its been a while since I’ve written an update.
Since this is a cancer blog, that is good news. There really is no new cancer news. I still worry every day. I worry the cancer will come back. I worry the cancer is back. I worry about every ache and pain and twinge and bump. And then I tell myself that is doing me no good and to put those thoughts away and go have a happy day. Which I usually do.
That said it’s been a crazy busy last 6 weeks.
We spent an extra week in Palm Springs at a gay-friendly, clothing-optional apartment complex with 6 units around a beautiful pool and spa. I’m in love with Luca, the sexy young Italian who runs the place! I was hoping he would be out lounging by the pool but the only only naked person outside was Steve flashing his robe open one day just because he could!
In the bench is a red pillow and if you have “sensitive” friends over you can put out the pillow and everyone will respect that!
Pixel loved the grassy backyard!
We then drove home in about 5 nights, 6 days which for us is just driving, not sight-seeing. We did see our Tucson friends for dinner — and arrived just in time to enjoy a Chicago-style white-out blizzard that night in Tucson!
Other than that snow, we managed to just stay between the storms and had pretty clear driving.
We got home on a Monday night. That Wednesday was Feb 27. I took Steve to the airport (more on that) and went to close on the sale of the store. YEA! I’m so happy to be done with FiredWorks and moving on. I hope the new owner loves it and finds as much satisfaction in having a small business as I did.
Steve’s mom had some really major surgery and he ended up spending 3 weeks in Florida and just got home last Wednesday! She is still in the ICU but slowly getting better, even if she is more slowly appreciating how lucky she is to have survived the surgery.
While he was gone, I updated both bathrooms and our bedroom. I can’t wait to see what my sister thinks when she comes home! And speaking of my sister, you all know how much I love interesting nature, well look at the giant box she sent me the other day…what an awesome surprise. Thanks, Terri!
So I’m busy updating and sorting our stuff, getting ready to put the house on the market in the next year and move somewhere smaller and with less taxes.
With Passover here, our lives are just hectic and busy, not with doctors or chemo (thank goodness) but with regular stuff which I am so grateful to have. We had a lovely small seder at my house last night and I felt like I had survived the cancer plague (at least for now) and was free.
So that’s where I am. Home. Packing. Waiting for Spring weather to actually get to Chicago. And occasionally napping with Pixel.
Steve caught us here … not sure who is smiling more!
Please write me back and tell me what’s new with you!
PS. Its been so cold I took Pixel to my trainer’s with me. Here she is….what a good girl.
PPS. Have a happy Passover!
PPPS. When he goes into baking mode, Ross really turns out some impressive stuff. The picture doesn’t show how delicious these were… or give any clue that they were vegan and gluten-free, too.
PPPPS. “Cards Against Humanity” games are available again on Amazon for the time being, including the expansion sets Max and his partners have created. This week, Max was in Boston, unveiling his latest Kickstarter project, then on to San Francisco for another conference. Busy guy.
1 26 / 2013
Pixel: The Traveler
Just a quick update, mostly photos.
Traveling cross-country with Pixel was actually easier than we expected. Many hotels take dogs, some charge a non-refundable deposit (isn’t that a fee?), while others are free. Pixel was remarkably calm, taking elevators, hotel rooms, and her crate in the car all in stride. When we used to travel with the kids, we tried to spend some time every day doing something for them (a kid’s museum, a park, Legoland) and something for us (a factory tour, a national park, an art museum or sculpture garden). This trip, Steve and I laughed that traveling with Pixel, we spent part of almost every day at a dog park, and part of every day where she stayed in the car or in her carry-case while we saw something we liked. It was actually rather surprising that every town has a dog park and most have more than one!
Outside of St. Louis, we ate at Lambert’s Cafe, a restaurant that specializes in throwed rolls (that’s not how they’re made, it’s how they’re served). Pixel is in her carry-case on the bench. Such a loud place, no one but the waitress knew she was there. Funny how many restaurants let her in!
Our first fun stop was Memphis. If you haven’t been there, it was such a fun, friendly city. We visited Sun Studios which was especially meaningful since our friend Billy is the drummer in “Million Dollar Quartet.”
Our next highlight was the Gibson Factory Store. PIxel liked it here.
and so did Steve!
After shopping, we put Pixel in the car so we could take the tour. She had played for 2 hours, was walked, fed, watered, the temp was in the 50’s, the window was cracked, we were in the Gibson Parking Lot. Thank goodness Steve was smart enough to mention to the guard that our puppy was in the car and might be crying. We went on the 30 minute tour (amazing to see the guitars being made) and by the time we came out someone had been in, worrying about the crying dog in the car. Though Pixel watched us eat Gus’ Spicy Chicken for lunch from inside her carry case, that night we hired a hotel housekeeper to “dogsit” so we could go hear music on Beale Street. Heard a fabulous guitar player named Paul Taylor with the Blooz Emergency band at Rum Boogie.
Pixel also made quite an impression at the Peabody Hotel. We walked thru the lobby and stopped to watch the ducks. The Duck Master was watching us very carefully. Pixel just sat and looked the ducks while all of us looked at her. Suddenly she barked, once, and the Duck Master barked back, “OUT.”
We had some other great stops including Dallas where Pixel played at Fort Woof and we went to the book depository and then a private “tour” by a street “guide” who showed us his own “evidence” that the Warren Commission was wrong.
Then, of course, there is the day when you finally see the mountains. As you drive west you can watch the sun set for about 2 hours.
We spent two days with our good friends in Tucson where Pixel had her first taste of freedom as they have a little dog and a doggie “door” to their fenced yard. It took Pixel about an hour to figure it out and then she had a blast going in and out on her own. I think she thought she had a private dog park!
Next day, we arrive!
The house this year is more showy and less practical than last year. We spent the first few days here complaining and getting things fixed (which was fine but not what we wanted to do while on vacation), and the house has fun-looking, very contemporary sinks that are awful to use on a daily basis and an impossible kitchen that makes it less than inspiring to cook. None of this is stopping us from enjoying ourselves, the warm weather, and especially the spa/hot tub. Pixel loves having a fenced yard to run in. She is not quite as crazy about the pool, but I keep encouraging her.
We have a signed “Shag” in the bedroom, which Steve “fixed” to include Pixel!
Our house is in a wealthy area, right up against the mountains, with multimillion dollar estates, so our morning walks are spent gawking at the homes, the landscaping, and the plants. I’m always awed by the flowers and brilliant colors that pop out of the harshest, toughest, exteriors. Not unlike some people I know!
Who have thought pink was a desert color?
Yes, it does have that look!
Like an abstract painting of color and light.
Not baby pink, hot pink!
I love the bulbous shapes. Looks like a bunch of bananas.
A rainbow of cactus.
Hair seems a popular decoration.
Purple blooms are very sexy.
Looks like a bad growth of something. I’d see a doctor.
Yesterday we went to the Integratron for a private sound bath. Quite an amazing experience, even the second time.
On a last note, we walk and take Pixel everywhere with us. It’s just amazing how often we get stopped for people to oooh and aaah over her. Plus the Palm Springs area is about as dog-friendly as could be. There has not been a store that doesn’t welcome her and the slightly “outdoor” restaurants welcome her with a water dish and treat. Even Chase bank has a sign saying please keep your dog on a leash while inside the bank!
Love to all. Wish you could all come visit!
Write me back.
PS. I must admit I am thrilled about the freezing cold weather I am missing in Chicago. Since this is the desert, (we keep telling Pixel it’s not dessert but she is ever hopeful) we have cool mornings and evenings, but it warms up to 75-80 during the almost always sunny days. Not to brag or anything.
12 30 / 2012
Looking Forward to 2013?
December 30, 2012
As 2012 winds down and 2013 approaches, it’s traditional to reflect back and look forward.
If I’ve learned anything this year, it’s that I can experience seemingly conflicting thoughts/emotions/feelings at the same time. I can be grateful for the wonderful support system I have while also wishing I didn’t need it so much. I can be rejoicing in my kids accomplishments and still be worried about what they are not doing. I can be frustrated by how slowly time moves in the cancer-cure world where a “new” treatment that might delay recurrence for 3 months (!) takes 40 years to be approved and still be astonished at how quickly we adopt new technology so that what was amazing a year ago seems ancient today. I am looking forward to what 2013 may bring and also dreading what 2013 might bring.
I feel both happy that 2012 is behind me and sad that 2012 is gone and that time will never be mine again.
2012 has been an interesting year. I finished active cancer treatment, grew back my hair, worked on coming to some sort of emotional calm (or at least control) about my future, the very thought of which scares me since that future might/will include more cancer, a worry I will carry with me always.
I got Pixel, the best distraction and lesson in living in the moment, and the best puppy ever too.
Max continues to astonish us with his ideas, his creativity, his passion, his energy for pursuing it all, and his financial success. He was asked to write a top 10 list of games for 2012 and he made them sound so interesting even I want to play some of them. And if you ever felt guilty using Wikipedia and ignoring their pleas for a donation, you can relax: The card game Max and his seven friends from high school created offered a Christmas expansion pack on a risky pay-what-you-want basis, and instead of losing money, made $70,000, which they promptly donated to Wikipedia.
Ross moved back to Chicago, found his own place to live, and has managed to support himself without help even as he continues to search for his career path. He’s still looking to bake and exploring opportunities, as well as whipping up great stuff for us at home. The progress he’s made since he left Boulder is impressive and just a hint all the great things we know are in store for him.
My Dad (will be 94 in June) is still mentally sound (when he can hear you), but slowing down and much less steady. He doesn’t want to use a walker because “once I start using that, I’ll never walk without it again. Besides, you look so old when you use a walker. I don’t want to look that old.” His resistance can be frustrating but I think that stubborn, I can do it myself attitude, is part of why he is still strong at 93-1/2.
My Dad, Me, and Ross at Just Be Fit, working out this past summer.
My “niece” has been posting a new photo of her new adorable baby everyday on her photostream — so I really feel like I am watching him grow. I also feel a little more involved since I get that cute reminder each day. THIS is what a baby album is in 2012.
Here he is with a silly pacifier we got him! We like mustaches in our family.
2013 brings a bit of uncertainty. As I move past active cancer treatment, as the months (or even years) go past, most people feel safer the farther away from the cancer they get. Maybe its just pessimism, maybe its just an attempt to prepare myself, maybe its reality, but I believe the cancer was so aggressive and extensive that even the surgery, chemo, and radiation couldn’t get every cell. Therefore, the further from treatment I get, the more likely it is that the few cells left behind will find a way to grow again. THAT makes the passage of time more scary — like its already been 2 years out of maybe only 3, or even 5. Of course, if I only have 3 or 5 or even 10 more years I don’t want to waste them worrying — plenty of time for that when it happens.
More uncertainly comes as I am (hopefully) making a deal to sell the store. Nothing signed but I feel confident. Now I have to figure out what to do next.
Steve and I leave in a week for our 8-10 day cross-country trip to Palm Springs. Compared to last year, when dropping everything to reward ourselves with a two-month reprieve from the previous brutal year seemed obvious, we are both a little less excited and more anxious about this journey. Part of it is that traveling with Pixel is unknown and certainly different. Part of it is we are both feeling older and more achy, less physically fit and therefore more vulnerable. Part of it is being even further away from our parents at a time when their health challenges could instantly turn into a crisis. Part of it is we are both feeling a little less like we should be spending all this money on fun when ours and the country’s financial future seems so precarious.
I am hoping all the quiet travel-time will get us brain-storming about future projects/careers/plans. We have plenty of creative ideas, just nothing yet that inspires us to pursue the actual production — that’s the part that feels like work to us. (If anyone wants to take the manufacturing figuring-out part on, I have two great ideas for dog-products. Even my vet wants in!)
Right Now…In this moment…
Happy New Year to you. I wish you and your family a joyous, fulfilling, healthy (we all say that but I really mean it) year. A year sure to include laughter and tears, success and failure, calm and stress, but always filled with friends and family like you to share those things with, which makes the good better and the bad bearable.
Love, Peace, Deep Breath,
11 22 / 2012
I’ve Been De-Ported
Just a quick update and mostly a chance to say how grateful I am for all of my friends and family, which means YOU if you are reading this!
On Monday I had my port taken out. It was yucky but fine. I didn’t look. So now I’ve been de-ported and it feels great. I think the port was more of a constant reminder than I realized, because now I feel free. Like the treatments are really OVER (including the port flushing), if only a reprieve and not forever.
One friend, who’s opinion I take seriously, replied to my last blog that I was gloomy. Always focusing on the when-it-comes-back possibility. Or how the tests didn’t catch it the first time so clean tests don’t really make me feel that safe now. I’ve been thinking about that comment a lot.
I think that when I write this blog — it IS my CANCER Blog after all — I am thinking about the cancer part of my life. Most of the time, thanks to Ruth and everyone else who helps me so much, I can go hours, or maybe even a whole day, without even thinking about the cancer.
We’ve made friends with a family that moved into the neighborhood this summer. We’ve had them over a few times, and enjoy their company and their kids, and it occurred to me that they knew nothing of My Cancer Year. It seemed odd, like I was keeping some kind of secret, but I had no idea how to casually bring it into a conversation or what the result would be. The wife is Greek so she made a fabulous Greek meal on Tuesday night as a pre-Thanksgiving fest. I don’t remember if the subject was hair or how we spent the previous summer, but it came around to the cancer. It was a kind of relief to “come out” especially since they were pretty cool about it, although they were a little shocked that we seemed so normal and happy so soon after. In a text thanking me for dinner, she wrote “figured you were a tough cookie when I met you… thank you for sharing how strong you really are.”
I am much, much, much better at deciding when to let myself think about it or get emotional about it. I never thought I would be able to do that.
THAT is something I am so so grateful for this year.
I also think it would be unrealistic to think that I am fine and the cancer is gone. The most my doctors will say is they hope it is gone, and I should live as if it is until we find otherwise. Knowing that, as I’ve often repeated here, makes it really hard for me to say no to myself, particularly with food and travel. ( I have been much better at eating healthier and exercising more, but no applause yet.)
I am sort-of grateful I CAN exercise!
It’s morning (10:30) in my house so everyone but me is still sleeping, or at least in bed. The last few years we have just done dinner with the four of us. We make all the usual things but of course, we are all such foodies, we can’t go out because no one else would make it right. And we can never agree on who to invite. So we just spend the day together, everyone cooks (I mostly clean up after), we don’t really watch parades or football — we watch the food channel most of the day!
Today I guess along with the smells, we will torture Pixel a bit!
As Steve says, “Pixel. The other white meat.”
Ross and I made a bunch of pies yesterday, then delivered them to his friends who live nearby. We spent about 12 hours together and didn’t argue so I’m grateful for that today!
I am definitely grateful I CAN enjoy food.
I hope all of you have a wonderful day filled with laughter, family, good friends and deliciousness!
PS. I am most grateful for Steve and my family and all my wonderful friends who make me feel loved, even when I’m not feeling, or acting, particularly loveable!
11 12 / 2012
TREATS are ending
UPDATE 36 - Again!
I wrote and sent a version of this update earlier today. I’d been working on it for a few days and finally got all the photos inserted (quite an accomplishment for me), then I thought I published it but I didn’t, and instead I somehow deleted it. So very frustrating.
For those of you who got the email earlier with a link to update 35, that was the LAST update which I sent a few weeks ago. Funny how many people responded to that as if it was new. (If you did that, I am just grateful that you are reading and responded, please don’t feel bad, I can’t even remember my own life). Anyway, it just goes to show I stress about every word and not hardly anyone notices if I just publish the same entry! I guess its good I realized a while back that I really write this for me, not you.
So here goes … again
Happy Veteran’s Day, a day late. I’m so proud of all the men and women who serve in the military. I really can’t imagine fighting in a war. My Dad was a bombardier/navigator, shot down over Germany and in a POW camp for a year. That experience changed his whole life. Not only the bad stuff he lived thru, but also the friendships he forged with the men in his squadron and in the camp with him too. Something about living on high-alert in such an intense environment, always on edge, waiting. It sure creates a bond with those you share that experience with.
Here is my Dad in his uniform.
Here is my Mom and Dad from their wedding in Colorado while he was on leave.
Here is my Dad last year.
So proud of the veterans.
Its interesting to think about being a veteran. Just what does that word mean? We use words like fighting a battle to describe cancer treatment. Am I a veteran of cancer? Does being a veteran mean you are done fighting? Or is veteran just a military word?
As to my own battle with the cancer…
Had a Chest CAT scan with contrast and a Breast MRI and they both came back clear. Of course they were clear when we knew I had cancer so that’s not all that comforting now. But it’s the best that there is so I have to live with that.
I did decide to have the port taken out. It’s interesting but it’s getting harder to enter that chemo dungeon, even just to have my port cleaned. I think that during chemo it did feel like I was in a war: on high-alert, ever ready, always on edge, waiting for the other shoe to drop. I guess I just don’t like to think about that time, and the port is a constant reminder, aside from the cleaning. Also, if/when I do need it back I guess putting the port back won’t be my biggest worry.
Which brings us to my more personal battle with myself…
I realize that while I was in treatment I let myself indulge in everything that felt good or offered any escape. Now that it is two years since my diagnosis and a year since active treatment, its time to stop treating myself with treats and start living my life as if I will live. Those TREATS have to end.
I’ve said, and said, and said, and said, and said again, that I’ve got to do something different and last week Ruth said to come back with a plan. So all week I’ve been thinking about that. I know I have to start small and do little things that I can easily accomplish so that I feel successful. That will encourage me to continue, I hope!
So here is my new plan, resolution, a few easy commitments. No more white food (bread, rice, potatoes, pasta) but whole grain stuff is OK. At least this keeps me away from the bread when in restaurants. I know I’ll cheat a little on the sugar (that’s white too) but I hate artificial sweeteners altho who knows what I might learn to like! Excercise at least 3X a week, once with Aaron, twice on the machines. Try to walk at least 1-3 miles 3 other days. These are small goals for now but lets see if I can even stick to these!
Talking about indulging myself, Steve and I rented a house again in Palm Springs. We are planning to drive and take 10 days there, going thru Memphis and Dallas and Tucson. We’ll be traveling with Pixel so this will be a new experience. I’m sure we will eat more meals in the car and in hotel rooms! McDonalds does have healthy meals these days… right? I’m hoping I can find doggie daycare in some of the cities so Steve and I can sight-see. We really want to see Graceland!
In the meantime, in preparation for travel and hotels, I’ve been working on teaching Pixel “quiet” and also getting her used to riding and staying in a crate in the car. My thinking is that as long as it is cold (not freezing) out, we can leave her in the car for an hour while we eat, and that she needs to be quiet in her crate in the hotel room if we leave her there. Yesterday I took her on a pretty long walk and playdate with her friend Ranger.
Here they are together.
Afterwards, thinking she was tired so it was a good time to practice, I stopped at Trader Joes and while I shopped, she “ate” her way through the mesh side of the car crate! Now when I put her in there she sticks her head out through the hole. It’s really cute but don’t tell her I think so. I’m trying to be tough.
Caught in the act, here she is recycling stuff from the trash for an art project. You know how my family hates to waste art supplies!
Once we get to Palm Springs, this year’s rental house has a saline pool and hot tub. I am planning on swimming everyday! I am also looking forward to seeing how Pixel reacts to a pool. She has never been in water over her head.
Here are a few photos of the house.
Nice hot tub…huh?
Does that look awesome or what?
If you are really interested in seeing all the photos here is a link:
On the home front, Steve is in Florida this week. He spent about 5 days with my Dad while Mary was away. I so appreciate how great Steve is with my Dad. They really love one another. Now Steve is spending a few days seeing his brother and parents. It’s nice for him to get to catch-up but not exactly a vacation so I hope he is enjoying the sun and warm.
Ross was in Colorado for Halloween and he had a small reunion with some of his college friends. He is still working at the bakery in Skokie and delivering for Pierros a few nights a week but any ideas would always be welcome. Welcome to me at least — I guess I’m not sure about him!
Max continues to work on developing interesting projects while his Cards Against Humanity game continues to sell-out within hours of being back in stock! Here is one of my favorite articles written about the game:
Its so cold here today that I took Pixel to the pet store and we walked around there for a while just to get out somewhere that was dog friendly and indoors! I don’t mean to sound so spoiled but doesn’t Highland Park have an indoor dog park? I really hate cold weather.
PS. As always, write me back.
10 10 / 2012
GRATEFUL is good.
I am so grateful for the good results, altho I must admit its not a cure, its just a slight reprieve, so I’m not exactly jumping up and down, altho of course I am relieved.
Mostly I am so grateful to all my family and friends who bothered to respond to my good news with heartfelt joy for me. It really felt good to think that of all my 55 or so people on this list (real friends as opposed to facebook friends which I call fake friends), almost everyone wrote me back with at least a word or two. I am really grateful for that support.
Today I saw Ruth and we talked about why it is so hard to make good, healthy choices even when they impact our health. I know that being overweight gives the cancer fuel to grow so why is it so hard to DO something about that? We discussed the pleasure factor of all the bad habits vs. the feel good in the long run pleasure of really feeling better, not just enjoying the momentary pleasure in front of me. I guess I have to believe I will live in order to diet since if I knew I would die in a year or two I don’t think I would stop eating ice cream!
However I also remember what it is like to be fit and I know that feels better … not just looks, but my back would ache less. I wouldn’t be out of breath from a flight of stairs, and I imagine all the pains I blame on the Arimedex would only be helped as well.
So I’m going to try to be accountable to myself and to all of you. I promise to eat better and less, exercise more, and lessen other bad choices. I believe I can do this for at least 2 weeks and I know/hope after that I will feel enough better to continue.
I’ll try to check back in two weeks and let you know how I’m doing. Hopefully I will be 5 or even 3 pounds lighter by then!
10 07 / 2012
October 7, 2012
It’s been a long time since an update but I thought I should contribute to Breast Cancer Awareness month, which in our house is any month with 28 or more days!
Steve and I had a quiet summer, mostly at home since its hard to travel with a still-training puppy! We enjoyed the nice weather, took lots of long nature walks, napped too much, and ate way too much. Nothing is more delicious than ice cream in the summer!
Tomorrow is a big CAT scan so I’ve been getting a little more anxious each day as it gets closer. Dr. Dragon and Steve both say not to worry, it’s going to be fine, but I know that neither of them really knows. I told Steve I was imagining the phone call where Dr. Dragon has to call and say they saw a suspicious spot. I think that call would be hard for him to make, and of course, harder to receive. Steve says there is always photoshop! If only it was that easy.
One of the women I’ve become “friends” with on twitter just found out her cancer is back. She had 5 clean years. VERY SCARY. Now there are tumors in her bones and she is waiting to find out what the treatment plan will be. Just to be clear, this is breast cancer that has metastasized to her bones, not bone cancer.
She had micro-metastasis like me, which means that there were cancer cells “out there” just too little for the current imaging machines to see. Maybe the chemo and radiation got them but maybe not. There is always a good chance they are hiding out, just waiting to grow.
I don’t think I will (or should) ever feel safe again. I think it is rational and realistic to have that worry since I know it will always be possible. MUCH more possible than getting hit by a bus, as the saying goes. On the other hand, I work hard every day to stay mindful of today, and enjoy that. If I give in to the worry all the time then the cancer wins whether or not it grows again. I’ve actually gotten really good at just stopping my mind from going down that road and forcing myself to concentrate on something else … even if its dumb computer games like Scramble and Scrabble.
On the other hand, I know that being fat can actually encourage the cancer to grow so I have to find the willpower to diet. I know it sounds like an excuse, like “I’ll start my diet tomorrow”, but I’m stating it here: As long as I get good news after this scan, I will exercise more, eat less and healthier, and indulge in bad habits much less often! As my friends and family out there…hold me to it!
In the meantime, all is going well on the family front.
Max is busy travelling to various conventions and such, promoting CAH and HvZ. He is meeting all sorts of game designers and other (as he describes them) “heros of 13 year old Max.” His schedule is exhausting and exhilarating. It’s good he is young and doen’t mind not sleeping.
Ross found a room in the city and he is getting used to being comfortable there and in exploring Chicago. He kept his PIero’s Pizza delivery job about 4 night a week so we often get to see him on those nights. Ross has also been helping at FiredWorks where he is really awesome with the customers. It’s too bad the store is in HP or I would let him run it. He is also hoping that the gluten-free baked goods he created for the kosher caterer turn out to be in big demand and that turns into a full time job in the near future.
PIxel…what can I say? She might be little but as I’ve always said,”being little doesn’t stop me from doing anything!” She has loads of spunk and personality so she fits right into our family. She loves nothing more than a play in the park with her dogie friends or a long snuggle with Steve and I in the morning in bed. She pretty much loves anything and everything, even the vet! When Ross comes in, her glee is so great she can hardly contain herself, wiggling her whole body in anticipation of him giving her a few seconds of attention!
Even Steve loves her!
Obscene photo of my giant butt, taken from the most flattering angle possible, but so funny if you look close, Pixel and I are both in the exact same position — on the side, leg over, arms up.
I’ve been thinking I need to do something creative again so I took out my camera and was playing with a kaleidoscope app. Here are some of the photos…
The photo above is me!
This photo is Pixel!
This is the American Flag.
This is an old typewriter
This is the inside of my mouth.
I also taught a ceramics class at the High School which was fun. Makes me realize I have to get my hands back into wet clay again soon.
PLEASE write me back and tell me about your life! One bad thing about not writing this blog for a bit is that I’ve stopped hearing from some of you.
PS. I promise a quick update as soon as I get the call from Dr. D telling me, I hope, all is NED (No Evidence of Disease).