Site One

Today was pretty amazing. This morning was the first time I got to see my first research site (Site One)!!!

I started writing the application for this research grant just as I learned of my cancer diagnosis. I wrote the first preliminary proposal while in Seattle for a medical visit in June of 2010. I drug myself to the MSU campus every other week while I was in chemo to meet with my committee to write the full grant in the fall of 2010. Since then, we've spent a lot of time planning and thinking on how design this research trial.

And after all that, today I got to see it, not on paper, but for real, in a farmer's field. It's not much right now: a lot of flags and stakes as we get ready to seed sometime this week.

Today we were out taking soil cores to get a baseline characterization of the site. It was a perfect morning, with a big, blue sky. I am looking forward to these office views for the next several years.

2012

Time has gone rapidly rushing by, and I have been remiss in my blog updates. The good news is that I am spending less time on the couch these days, and more time living. Let's see if I can get back on track...

The other day I received an email from a dear aunt asking, "How are you?" So rather than try to cover everything, I'll try to answer that question.

For the longest time I think I needed a break from talking about all this. It's been nice to put some distance between myself and the horrible events of the past few years and just go about my daily life. One of the best things for me has been to throw myself into my work. I really think it has kept me sane. My work right now is working on my graduate degree. I love learning, always have. My mind and my time are completely consumed with my studies and my research. I love it, but it's very intense. It leaves me very little time to worry about myself, which is probably the best thing for me right now.

They say that most cancer patients feel the emotional fall-out after treatment ends (depression, anger, etc.) I can see why. You don't feel like you're "doing" anything to fight the disease anymore. Now there's just this big ocean of worry... "Will it come back?"

This worry for me is compounded by history. My mom passed from breast cancer. And this summer, my dear cousin passed from it as well. Extremely heartbreaking and tragic, no way around it. So, if I give myself any time to brood, I can start to feel like I might be next. That perhaps death has me in his cross-hairs. (Why is death always referred to as "he" anyway?)

Grad school plus family and home responsibilities had given me little time to contemplate all this. For anyone who has been through trauma, I would recommend taking on a new challenge. Call it "Distraction Therapy." Take 2 graduate level courses, throw in 88 research plots, and you have a recipe for happiness. I hope to write more about my research in future posts...

Mentally, I am happy to report, I am doing well. Except for when I'm tired, I feel a renewed sense of purpose and hope. Actually, it's a bit ironic. Prior to my diagnosis, depression was a detour I would take every now and again. (Don't we all?)

Now, I feel like I really don't have the time. My time is too precious and I have too much to accomplish during my short time here on earth. Moping only gets in the way. Cancer has brought clarity, in that respect.

One challenge I have is the lingering effects of chemo-brain. My short-term memory is atrocious. Really. I have to write everything down. And even then I don't always remember. I can't remember conversations I had earlier today. Can't remember names of people. My speech is slower, and I have trouble finding the right words in a conversation. I know it's there, and I can feel myself reaching for the right word, but my mind moves as if encased in raspberry jam... very slowly. I have no capacity to multi-task and need big chunks of time to get any proper work accomplished. Email has become a nuisance as it interrupts my train of thought. I find I use it less and less these days.

Regarding my overall health, I'm still slowly recovering. Fatigue seems to be my constant companion. I am learning to adjust to this new normal and find that I have less energy and reserves for the stresses of daily life. So I take naps, go to bed early, and get only a fraction of my daily tasks finished.

I had this crazy idea that I would be exercising regularly by now... and if you count walking I am. But no Lance Armstrong action here yet. I do a small jog/walk exercise every few days, along with walking about 30 minutes every day. Happy to do it.

Medical follow up is strange. They don't really do it. Because the truth is, that if the cancer comes back, they have no further treatments to offer me. I get an x-ray once a year. That's it. Weird, but at the same time, fine with me. I have check ups every 3 months. My last one was in January. My doctor offered to do a bone scan for me, just so I could have peace of mind that the cancer hadn't come back. Bone scans are no fun... they inject you with radioactive dye, then you wait for 4 hours and they scan your body. So it's half a day spent at the hospital, more needles, and radioactivity. Um, No thanks, I said. For me, I just felt like I have given more of my time to this awful thing that I ever wanted to, I refuse to give 4 hours more. There's a lot I can do with 4 hours, thank you very much... like study statistics.

I am on a medicine that reduces the chance of recurrence. Every 3 months I get a shot that keeps my body into early menopause. Then I take a daily medication that counteracts any remaining estrogen in my body. The side effects of all this are no fun, hot flashes and arthritis. So I feel like an old lady. Oh well. At least I'm here to talk about it, right?

One goal for this year is to get my sexy back. I want to keep this hot man of mine around! I can't just go slumming around. So fashion and makeup are playing a big role in taking care of myself and having fun. I am finding that life's greatest challenges are best met with some knee-high black boots and Christian Lacroix perfume!

I had reconstructive surgery in Seattle in the fall. There are still a few more steps in the process, so I'm not "done." The new girls are better than nothing, that's for sure. But the originals are by far the best. I do miss them.

Ugh. Enough medical stuff. Isn't it just awful? Moving on to other topics... such as my hair! It's a crazy mish-mosh. I had great hopes that I would be sporting a very chic Audrey Hepburn-esque pixie cut... but I'm afraid it's more Albert Einstein than anything. It's a fuzzy mash of tangled curls. But like everything else, happy to have it. I'm close to putting it up in a pony-tail. Pictures to follow when that day happens!

So much more I could say, but for now I will say good night and hope to write more again soon. Reveling in the victory of getting this blog post up and not leaving everyone hanging. Blessings and love.

Susan

Summer is here...

The French Countryside, our last morning there


Too much time has passed since my last post, I know. The good news is that I am feeling so much better that I am out there living and playing catch up on all the things I've missed during the past year. I'm not lying on the couch all day! Yahoo! Lots of folks are wondering how we are doing, so I will try to give a recap and summarize March, April, and May. (Goodness, has it really been that long?!)

On March 10th we left for France, 2 days after my last radiation treatment. To say it was too much too soon for me would be an understatement. But, looking forward to the trip was such a bright spot that it kept me motivated during those last few months of treatment, so I wouldn't change a thing. We spent some time in Paris and in the southern countryside for about 2 weeks. On the bright side, we had a fantastic time being together as a family and not having to deal with any health issues. We went with my in-laws and had a great time with them, which was another bright spot... being together as a family and having fun (and drinking lots of wine!) On the not-s0-bright spot list was the weather... it rained and rained for most of the time we were there. Local bridges were washing out and fields were flooding, so we didn't do a lot of sightseeing. The picture above was taken on the very last day we were in the south... we were driving to catch the train early in the morning and the rain stopped and the sun came out. I hopped out of the car to take a few shots.



Visiting the city of Carcassone

Another highlight was visiting the walled city of Carcassone. It's an amazing medieval fortress that looks like something out of a movie set.... cobblestone streets, towers and turrets, ramparts, and even a moat! We had a great time exploring this ancient fortress. Another highlight for me personally was visiting a French no-till grain farmer on our drive down to the south. Aggies will be interested to know that France is the only country in Europe that can feed itself. This farmer in central France gets about 120 bu/acre of wheat, while his counterparts in northern France can get 160 bu/acre. This is staggering, considering the average in Montana is about 40 bu/acre. (Shows what a difference rain can make.)

Grace and I learned some French before going on the trip, and had a blast practicing our language skills. I have continued doing my French lessons since returning and am looking forward to going back someday, provided we go when it is warm and dry!

Really, the best thing about our trip was the change in perspective. For so long, our family had been focused on my health. It was great to get out there in the big, wide world and blow the doors off of our narrow perspective. It was a breath of fresh air.

We came back to the US at the end of March, and then things got really crazy. I received the amazingly good news that a grant proposal I had been working on for about a year had been accepted for full funding. This grant will allow me to start a graduate program in agronomy at MSU this fall. I really can't overstate how happy I was to hear this news. For several years I have been wanting to go back to school, as I currently only have a BS degree. I took my time and found several faculty I would really like to work with here at MSU. Last year, I asked one if he would take me on as a student. He agreed, but said I would have to find my own funding. So last March I started looking for grant opportunities. Then in May I received the bad news about my health. I was very discouraged and I was tempted to just give up the grad school idea and think about it some other time when all of this had passed.

And then I got really, really angry. I just refused to give up and roll over. Cancer had taken and destroyed so many beautiful things in life (my mom, my friend Todd, my cousin's health, my body) I just wasn't ready to give up on this dream because of cancer. I was determined to submit this grant proposal. The deadline for the first round was mid-June of 2010. I had no idea how I would get it done with all the chaos that was going on. In early June, Brett and I drove out to Seattle for the second time. Brett and I worked out an arrangement where I drove and dictated while he typed the grant proposal on my laptop. (My husband really deserves a gold medal for all the kindness he has shown me this past year... I am a very, very lucky girl to have him.)

Then in Seattle, I spent an entire day holed up in our hotel room, writing away. My professor cleaned up the draft and sent it in. In August we received word that our proposal had cleared the first round. They then asked us to submit a full proposal, due in November. So, all last fall, while I was going through chemo, I would go to MSU the day before my treatments and meet with 3 professors to work on this full grant proposal. At this point, they did most of the work, but I was so proud of myself that I was able to make any contribution, no matter how small. After the submission, we just waited to hear the decision.

The day I returned from France, (March 2011) I checked my email to see that we had won the grant! I bawled like a baby. To see all of that determination pay off was an amazing moment. We now have a healthy, six-figure sum to fund three years of research. Our project will focus on the use of multi-species cover crops in no-till systems and how these crops affect the soil properties. It's a wonderful thing. My professor had applied for this same grant 8 times in the past, each time with no luck. This was his first time to awarded this particular grant.

So, this fall I will start classes at MSU and will be officially pursuing a Master's degree. There is potential to declare as a PhD student later on. For now, we have decided that it's easier to scale up than scale down. In the interim, I took the GRE, have been out at the experiment farm looking at field trials, and meeting with professors.

So, that was big news. But more just kept on rolling in. At the end of March I was laid off my job at NCAT. NCAT's agriculture program was funded entirely by the federal government. The budget wranglings in March cut funding for many similar programs, and by the middle of April I was out of a job. This has proven to be a blessing in disguise as I am now free to spend the summer gaining back my strength and spending time with Grace. It's especially sweet since last summer, I really missed on having a "real summer."

So, with that in mind, we bought a little vintage 1968 camper trailer and are planning on having all sorts of fun this summer going camping and fishing and enjoying Montana in the summer. Summer may actually be here. The temps are getting into the 60's, although we still have our snow shovel out on the front porch. Ha!

I see that this post is getting quite long, so I will sign off for now and write more again soon.

Love to everyone.
Susan

Change is in the Air

February, 2011. Showing off my new knitwear.
I designed and knit both the sweater and the hat.

So much has happened since my last post, it's hard to know where to begin. During one month's time I ended treatment, went to France, started feeling better, was laid-off of my job, and learned I had received a large grant which will allow me to start a PhD program. Whew! My head is still spinning from all the changes.

I think it's going to take several blog posts just to catch up, so I'll start with the health update first.

March 8th was my last radiation treatment. I was so relieved to be done. I had thought that radiation would be easier than chemotherapy, but it was challenging too, just in a different way. The main side-effect is lots of fatigue, which I am still wrestling with.

I have started gentle exercise. I do gentle yoga in the morning, then a 30 minute walk in the afternoon. Last week I tried jogging for 20 minutes, but it was too much and I spent several days recovering.

So. What now? I would like to say that I am free and clear of cancer and that this is over for good. But my oncologist says that he never tells his breast cancer patients they are cured, darn it. He has seen cancer return even as far as 20 years after the first incidence. However, these first 2 to 5 years are the most crucial. It's generally assumed that if you make it for 5 years without recurrence that you are in the clear.

None of this is very reassuring. I would like them to issue a certificate that I can frame and hang on my wall. I could look at it every day and feel secure that I am "cured." No such luck.

It's kind of strange how this all works. The diagnosis and early treatment phase is chaos and panic. Treatment is a blur of hospital visits, calls from the case-worker nurse, visits with the social-worker, lab tests, and more. During radiation I was at the hospital every day. And now.... nothing. It's a bit like being drop-kicked out the back door. "See ya! Good luck! Let us know if you have any bone pain!"

I will take a medicine, tamoxifen, for 5 years. It's supposed to block harmful estrogens in the body. Then I get a check-up every 3 months. They do routine bloodwork, take my blood pressure and ask how I'm feeling. And a chest x-ray every year. That's it. No CT scans, bone scans, MRI's or anything.

I thought this was very weird as I remember my mom getting CT and bone scans every 6 months during her follow-up care. When I asked my oncologist about this, he said that there is no advantage to knowing if there is a recurrence earlier rather than later, as it doesn't change the outcome. This is doctor-speak for "we have given you the best treatments available, now we just keep our fingers crossed and hope that it worked." It took awhile for this sobering message to sink in.

So. All I can do is move forward. I am certainly not waiting around, or looking over my shoulder, to find out if the treatment worked or not. I am making plans to be around for a long, long time.

This is the point where Western medicine has come to the end of its road. And while I am grateful for the treatments that are available now, I am all too aware that when it comes to cancer, Western medicine certainly does not hold all the answers.

With that in mind, we have been pursuing other therapies and treatments. First of all was a radical overhaul of our diet. After reading "The China Study" by T. Colin Campbell and learning of the National Geographic Blue Zones project (www.bluezones.com) we have taken out almost all animal products from our diet (meat, dairy, and eggs). I don't think we will ever be 100% strictly vegan. (Last night I cooked up some elk burger for our tacos.) But we are trending that way and feeling much better in the process.

Grace and I have been eating gluten-free for a few years, so taking out animal products adds another layer of complexity to the picture. It has taken us some time to figure out recipes we all like and enjoy. And it takes time for taste-buds and bodies to adjust. While I was in treatment, I didn't do a lot of cooking. Now that I'm feeling better, I am enjoying being back in the kitchen and exploring new recipes and ideas for our new diet. But it's going to take some time to create new cooking and eating habits.

We try to eat as many plant-based, whole foods as possible.Thanks to our amazing Vitamix, every morning I now have a green smoothie of vegetables. (Orange, carrots, spinach and broccoli are usually in there.)


Bug Juice

Another avenue I have been pursuing is functional genomic testing. Last year I discovered I was not a carrier for the BRCA1 or BRCA2 breast cancer gene. That was good news. But I wanted to know more.

Earlier this year, I consulted with Dr. Joe Veltmann, a doctor of nutritional medicine in New Mexico, for functional genomic testing. We looked at everything. We did genetic testing to see if there were any compromised hormone metabolism pathways. We tested my blood for vitamin D, heavy metals, and other stuff. We did urine tests to learn how estrogen was breaking down in my body. We did saliva tests to determine cortisol levels in response to stress. When all was said and done, Dr. Veltmann was able to make an educated guess as to what may have caused the cancer and designed an individual vitamin and supplement recommendation for me. I add these goodies to my bug juice every morning and down the hatch they go.

(A side note on Vitamin D. We did discover that I was low. But I'm glad we did the blood test to verify, rather than just guessing. Vitamin D is helpful, yes, but too much can be toxic. Did you know that Vitamin D (cholecalciferol) is the one thing that can be used for mouse and rat poison on organic farms? I wouldn't recommend taking more than the RDA unless you know for sure you need it.)

Exercise is the next piece of the wellness puzzle. While I'm not at a place to do vigorous exercise, I'm slowly getting there, and am looking forward to a summer of outside activity. Exercise is one of the few things that science has actually documented that will reduce the risk of cancer recurrence.

And the final, but probably most important piece, is spiritual and mental wellness. I am making a practice of daily meditation and prayer, and trying to take good care of myself in lots of ways, big and small. I think shopping, time with friends and family, and regular massage fits nicely into this category! :)

With treatment now in the rear-view mirror, it's officially time for a party! Time to celebrate life. All are invited to our house on Friday, April 29th from 5:30 onwards for an open-house/potluck/shindig. We will provide light snacks and drinks. Bring whatever you would like to eat or drink. Stay little or stay long. Kids and dogs welcome.

I will be making bug juice, but certainly not forcing anyone to drink it.

Bonjour!

2 months after my last chemo. Hair! Eyebrows!

Today was a lovely 50 degree day in Bozeman. Grace and I made the most of it by playing at the park after school. Sprinkle one playground with imagination, and there we were, sailing on a boat from New Jersey to France, encountering dolphins, sunken ships, and sharks. Ahoy!

Lots of new developments have come to the Tallmans recently. Here are the highlights...

Radiation treatments continue to move along. Last week I was a bit concerned as I became very tired and took a few days off work just to rest. I somehow bounced back this week and am feeling much better, but taking it easy. I had been going to the gym, but have decided to let that go for now, as I use up all of my available energy there. Afternoon naps are an important daily routine as well.

This Saturday I had the strength to pay the bills, do the laundry, take out the recycling, and finish a sweater. In my pre-cancer life, I would be somewhat upset to spend an entire day doing housework. Amazing how perspective can change. Now I am just grateful for every little thing. I'm grateful to be able to do so much. Grateful for laundry. Grateful to be productive and not lying on the couch. I feel like I'm Back From the Dead and am happy for the chance to be alive.

In other news, Brett has changed jobs. Last Monday he was laid off from Autopilot, the engineering design firm he was with. We had thought this was coming for some time, and weren't too surprised. By Tuesday, he had another job offer, but after careful thought has decided to start his own business and do contract design work for medical and surgical equipment. He already has one client contract and is working on others. So, things seem to be working out well so far, which is a big answer to prayer.

We continue to be grateful for my job, with it's great benefits and health insurance that allows Brett to be so flexible.

We have two vacation on the horizon. Brett is taking a much-needed vacation to Florida next week with a good friend. After a season of hard work and stress, I am happy that he can get away to relax, and happy that I am feeling good enough that he can.

And then.... for spring break, we are going to France! We are terribly excited. If all goes according to plan, I will finish radiation treatments on March 3rd, and we will board a plane for Paris on March 10th. We then will drive 6 hours to the southern coast to spend about 10 days in a small village. Brett's dad Pete and his girlfriend Patsy will be joining us.


My latest wig. I wore this for my passport photo. Makes me feel like a spy.

One of the silver linings of cancer has been waking up to the urgency of "now." For years we haven't taken a vacation. It seems there is never enough time, or never enough money. We have been hard at work for years with our jobs and with building our house. Every spring break, we have stayed home to work. Enough!

We had gone to France on our honeymoon and always wanted to go back, but kept putting it off. There was always a reason not to go. But now, we are making every reason to go!

We have been given the gift of a place to stay. (Thank you's go out to some incredibly generous friends.) And we are cashing in years of frequent flier miles. Our agenda will include good food, good wine, relaxation, and perhaps, a trip to the Musee' d'Orsay in Paris. We missed it last time and always said we would go back if we had the chance.

Brett is already fairly fluent in French. So Grace and I are learning with the Pimsleur series. At first she didn't want to do it at all. But I ended up bribing her with $1 for every lesson she learns. So far, it's working. Grace is delighted that she knows how to order wine and beer. And the other night, we learned how to turn down an overly-amorous French fellow. All of these are key skills when you are 9. haha.

Other fun things in our world have been watching the Super Bowl.... one of the few times we hook up the tv. And on Sunday, we celebrated my dad's 70th birthday with a small party.

I will sign off for now as Grace is waiting to start another lesson and won't start without me.

Au revoir!

Sending love,
Susan



The Tallmans watch the Super Bowl.
Grace brought all of her stuffed animals to root for The Packers.

What's Goin' On

I am hoping in the not too distant future to write a blog post that has nothing to do with my health. Won't that be nice? But since there are people asking, and I haven't written in awhile, here we go...

I have officially started radiation treatments. I go to the hospital every day at 2:45. Treatments last only a few minutes. It's a bit like getting an X-ray. They take a few minutes to line me up. The tattoo dots on my skin line up with the fixed lasers in the room so they hit the same spot every time. Then the machine rotates to three different places and emits a little buzz each time. The treatment doesn't hurt.

The field they are radiating is my whole right chest side. It's not a small beam. And for anyone who is curious, the radiation is generated by accelerating electrons around a coil in the machine, and not by any type of radioactive material. Here's a shot of what it looks like.




So far, I haven't had a bad reaction. They do say the over time you experience fatigue and it's very hard on the skin. I can tell that my body is taking a hit and am trying to take very good care of myself by going to bed early.

I have done 11 treatments, and have 22 more to go. The plan is to finish the first week of March.

Right now my biggest challenge is juggling everything that's going on. Adding a daily trip to the hospital into my schedule makes for more chaos than I had bargained for.

I'll keep this short for today, as I need to turn my attention to work and a whole other host of things that are piling up on my desk.

Love,
Susan

The Bad Day Blog

Yesterday a friend gave me a compliment. "Susan, you are a superhero. I don't know how you've dealt with all this, kept on working, and have a family. It's really inspiring." It was a gracious and kind thing to say. But I had to respond with the truth. I don't feel like a hero. And I certainly never set out to be one. And I have a lot of bad days that never make it to this blog.

Usually, when I have a bad day or just need to cry, I turn to Brett or a friend, or write about it in my journal. By the time I post on the blog I've given myself a few days to gain some perspective and pull out of my wallow. The upside to this is that I'm not bleeding all over the internet. The downside is that I can often gloss over the hard parts.

Well, today was a bad day. And my superhero cape was lost at the drycleaners because I wasn't handling any of it with grace or ease. Here's the highlights.

This morning my insurance company called. They have been denying about $6000 in claims for several procedures done at the Seattle Cancer Care Alliance. They tell me that SCCA sent them the wrong code for tissue markers. However, they (the insurance co) are not allowed by law to call SCCA and tell them the correct code. I need to do that. I am given a list of claim numbers, each about a mile long and am told to call SCCA to straighten this out. So now on top of everything I am supposed to be a coding trainer? Brilliant. I am in love with the American health care system and it's staggering genius.

At noon, I head off to the Cancer Support Community for a talk on "Nutrition After Cancer Treatment." There are 4 other people there, all of them are retired gray-haired ladies. I am the only bald person there. I often forget that this is the real face of cancer... the elderly. I feel depressed and isolated being with this group. None of them work or are raising a family. They live in a different world.

One of the ladies is quite overweight, bossy, and loud. She asks me, "What happened to you? You look so young!" I want to tell her that it is none of her business, but I just smile and change the subject. I kick myself for not having a snarky comment at the ready.

Bossy Lady then proceeds to hijack the nutrition talk by stating that even if you eat all organic fruits and vegetables, you still have to wash them with pure filtered water because there are so many pesticides in our tap water. She thinks these pesticides are why so many young people are getting cancer now. She casts a sideways glance at me.

I want to rebut this statement and lay out the facts. I want to talk about water tables and nitrate leaching and how we have very little of that in Montana. I want to talk about how glyphosate (Roundup) binds to the clay particles in soil and that because we have highly calcareous soils here, the CEC (cation exchange capacity) is very high and our water is probably very safe. But I don't. I get out of there as fast as I can.

Later in the afternoon I head to the hospital. Today I had a simulation for the radiation treatments. It's similar to the Spanish Inquisition, only there are no priests involved. I lay with my carved up chest fully exposed to yet more strangers while they poke and prod me. My arms extend over my head and hold on to a bar. I am on The Rack, vulnerable and embarrassed. Then at the last, they tattoo several small dots on my skin so they can line up the machine for each treatment. The tattoos hurt. I say a swear word. They laugh.

During this time, I am biting my tongue so I don't cry. I took my mom to a lot of her radiation treatments before she passed, when they were radiating the tumors that had moved to her spine. I think of her now. This damn machine makes me miss her. In a twisted way I'm glad she isn't here to see me like this.

Before I leave, I talk with the PA about hormone therapy. We are supposed to make a decision soon about what we want to do; standard tamoxifen, or a stronger clinical trial. Brett and I are exhausted from making these decisions. I am at the point where I really could care less. I am tired of wading through research papers to understand complex terminology. And the potential side-effects scare the crap out of me; early menopause, hot flashes, increased risk of uterine cancer, brittle bones, muscle pain, osteoporosis, etc. And, the heartbreaking clause for me, probably no more children. Lovely. By this point, I seriously need a beer.

I head home and call it a day. I didn't accomplish anything for work today, which is frustrating.

There is no food in the house. We head out to dinner and throw caution to the wind. Good food helps. Tonight I forsake my vegan diet and order whatever I want. I get shrimp risotto with a glass of malbec. It's amazing.

Maybe tomorrow will be better.