How are you feeling today?

People ask me how I am feeling all the time since I have been through the treatment portion of breast cancer, it is different from the regular hey, how’s it going question, they are genuinely concerned. It is very nice to have people care and show this level of concern, even with the price it came with. I don’t know how to answer the question effectively. Mostly because there isn’t a quick answer such as fine or ok or something of the like. I often include an unspoken ‘considering’ in my response, it seems the most honest.

On good days, full of energy, good recall and no gaps in memory it is easy, the answer is indeed fine with an inclusion of starting to feel like I might get back to myself again. These days are much more common now a year from last chemo. It usually gives me pause, do I want to feel like I did prior to cancer or do I want more? It turns out I want more. I want to feel like I did at 25. We all do, right? It is vitally important to remember that I am not 25 and when I don’t feel like I am 25 again I shouldn’t judge my day harshly. Hallmarks of a good day are good energy, good recall and no big gaps in memory are called out and a strong desire for tomorrow to be as good or better.

On lesser days, less energy, slower recall, big gaps in memory are obvious and in the forefront it is more difficult to answer. Today stinks seems so ungrateful, every day of survival is a good day and beats the heck out of the alternative. Today I wish cancer never happened, I wish the after effects of treatments weren’t still taking their toll, I wish I were 25 again seems so contrary to someone who had the best possible outcome from a cancer diagnosis, making this a wholly inappropriate response. The checklist for these days is simple, am I still around to experience all of the crap I am complaining about– then it is a good day stop complaining and try for a better tomorrow.

Then there are the bad days, no energy, even slower recall and the gaps in memory are cause for tears, these days are often accompanied by pain, not as much as during treatment, but a presence that is unpredictable. These days when people ask how I am feeling it is different, they know, it is written all over my body and facial expressions. This answer is you know, could be worse, hoping tomorrow is better, grateful to be here. These days very, very thankfully appear fewer and further between with each passing day. The prevailing thought on these days is gratitude at how long its been since the last one and try to make tomorrow better.

It never occurred to me that it would take this long and longer to feel like myself again. I was naive and thought when treatments were over and the rough side effects passed, voila! life would resume and be normal again. I am very grateful for the outcome and even more grateful that so many people care enough to ask how I feel and for the moment it gives me to reflect on just that, what it means I have come through and what I am working toward, a significant number of better tomorrows.

Survivor Sherpa: step 1 to non-profit status

Today marked the formal filing for non-profit status in Louisiana. I went to the Secretary of State and gave them my paperwork and a cashier’s check! It was exhilarating and exciting and a step closer to helping people!

This is such a wonderful step to have taken. There are more, but this is the first official one.

Survivor Sherpa is coming!

Let me tell you why this is so important to me.

I was diagnosed with breast cancer Sept 11, 2018.

While the internet is a wonderful place, it has a lot of scary information out there. I don’t do internet searches on symptoms or diseases anymore because it is almost all doom and gloom with a terrible death thrown in for good measure. Books are great because you can mark them, highlight them, read them without a power cord, carry them around and refer to them easily. There really isn’t a way to ask a book or the author a question. The kind of questions that don’t come up with a doctor, or are embarrassing or only come to mind at 3 am. This is where Survivor Sherpa comes in, when you need a girlfriend to answer those types of questions.

My doctors are wonderful, and they have a ton of experience on their side of the breast cancer experience. While they are empathetic and knowledgeable, they haven’t experienced it for themselves and couldn’t really tell me how to prepare for the emotional and psychological side of things, or the physical things at home. This is where Survivor Sherpa comes in, when you need to know what is coming and how to prepare. For example: clothing alterations and support for adjusting to the new you, meal prep and home adjustments for post surgical healing, and survival kits for comfort and dealing with chemotherapy and radiation just to name a few of the things that come at you hard and fast during cancer treatment.

My caseworker was outstanding dealing with insurance and keeping me moving forward through my work and insurance side of things. Not everyone has an opportunity to have a wonderful caseworker through their insurance or workplace. Survivor Sherpa wants to help navigate through all of that in order to focus on healing, so you never have to make a choice between dealing with your family or insurance or billing or anything else instead of just focusing on your health and loved ones.

My parents raised me to fight for myself with medical professionals. I did a significant amount of research and asked questions and advocated for myself as necessary, when I didn’t have the energy or too many holes in my memory, my husband stepped in for me. Survivor Sherpa wants to empower and advocate for women in treatment who may not be as comfortable fighting for what they need or believe in so they can thrive after cancer.

I would like to open a facility, something similar to a bed and breakfast for women and their families while undergoing treatment who need a place close to the hospital to stay. It will also be a place where a primary caregiver can drop off a loved one when they go to work knowing that they will be cared for in a safe environment during the dog days of treatment side effects. A place for survivors to care for and learn from one another after treatment has ended but life has not returned to normal just yet. A place to learn the skills needed to fully thrive after cancer, or thrive while living with cancer. A haven for anyone who needs it while dealing with cancer in their life.

Today marked an important step in making all of this a reality. Please take a minute to follow this link to donate to help make this a reality Every bit helps to bring this to reality.

The great laundry debate

Every single time I have time off I enter into a debate with myself: do the laundry immediately or wait until the day before going back to work to do it. This is symbolic, do I wash my work clothes and put them away, representing a close to the work week. Or should I wait to do it all with my vacation clothes, representing the close of the vacation. You should know that I often have this debate as I am loading my work clothes into the washer. The debate is more of a formality maybe a ritual, not really a debate at all.

Yesterday I was thinking about work, clothes, lunches, groceries, the usual process for getting ready to restart the work/school cycle after time off, especially holiday time off, when I heard the usual war cry from the girls: “we have no socks.” This, too, is symbolic. There are socks, they are everywhere, tucked under couch cushions, in corners, in shoes, under tables, they are everywhere. I sent them to get their dirty laundry from all over the house.

They returned with six overflowing, completely stuffed laundry bags of filthy clothes.

Apparently the laundry debate skipped this generation.

I don’t like having things hanging over my head, I cannot fully enjoy my vacation or down time knowing that I will be coming home to work before going back to work. My kids don’t feel that at all. They kept looking at me like, what? we still have the whole weekend to get this together, what’s the problem? And they even suggested that it didn’t need to be completely finished prior to returning to school. I could feel my entire family tree rolling over in their graves.

We sorted, we spot treated, we matched outfits, we did seven extra large loads of laundry and a few specialty cycles. We talked about how this was a daunting task and how we could break it down for the future so that it wouldn’t be so overwhelming and wouldn’t consume a whole day of vacation. They suggested that doing three loads during the week takes up more time than seven on one day, that it spread the dread so to speak.

It hit me, they weren’t daunted by this epically ridiculous amount of laundry. They didn’t see this as growing, looming work, tasks needing to be completed, or anything symbolic at all. It was just a means to an end of getting clean clothing back into their drawers and closets.

I would like to type that I giggled, saw their point, acquiesced admitting to my rigidity and am now encouraging them to self determine how and when they do their own laundry.

That would not be accurate.

We completed the laundry. It has all been taken care of properly. We set up sorters and a schedule so that I can rest easy, they truly do not care, knowing that there isn’t a mountain of laundry growing somewhere in the house to be taken care of at the last minute. While this never was a problem for them, we solved it together, for now. I have every hope that this will evolve into something we can all live with.

For me the great debate will continue, I will wonder as I load my work clothes into the washer the second I get home if I should do it then or wait. The symbolism and ritual are significant to me. What is a great debate in your life that when you look at it objectively, isn’t a debate at all, it is more of a ritual of some significance?

Someday is fast upon us

I hope that you are enjoying the new year, new decade and all of the 2020 equivocations. They make me smile each time someone throws one out cleverly in conversation. My favorite is hindsight is 2020 with the year being ahead of us. I don’t know about you, but I blinked and 2019 ended as quickly as it started. I have no reason to expect 2020 to go any slower. Although, I really would like to savor more of it this year.

Looking back at the last decade it is amazing how much has happened. My youngest daughter started the decade at 2 months old, middle daughter was 2 and the oldest daughter was 7. Such fun ages. They have lived a majority of theirs lives in this decade. We couldn’t wait for them to reach their milestones, and documented them feverishly.

Back then I wasn’t sold on personal mobile phones, they weren’t yet smart and you had to buy plans with defined number of minutes, roll over minutes weren’t around yet. I had a Blackberry for work–with a QWERTY keyboard. Now I use my phone for everything from photography, random searches for random facts, personal calendar with reminders, keeping in contact with loved ones a variety of ways and sharing my latest blog post. I rarely make a phone call on my phone, although making one is more likely on my work phone.

A decade ago someday was far off. Today someday seems very, very close.

I can’t help but wonder what role cancer played in the thought that someday is very, very close. And what role cancer played in making some somedays very compelling and some much less so perhaps more like musings.

Someday I would like to start a non-profit to help women with cancer deal with the other day to day nuisances so they can focus on healing through treatment to thrive after cancer. It seems like I cannot make Survivor Sherpa happen fast enough. Like if this particular someday doesn’t happen soon other women will have to make their own paths, feeling alone and overwhelmed. I cannot bear that thought at all. I work every day to make this a reality, no one should journey alone.

Someday I would like my children to be self-sufficient, independent, happily-satisfied, contributing members of society. Until then, we are diligently arming them the best we can so they can be when someday gets here for each of them.

Those two somedays are wildly compelling to me and take up a significant amount of my personal bandwidth.

Far less so is someday I would like to go to the Olympics and Ireland, Alaska and Hawaii and someday I would like to take a knife skills class and the culinary institute. These are just a few of the somedays on the less compelling side of things but are on the list of things to do someday.

Pay attention to your somedays and pay particular attention to the ones that occupy a significant amount of your thoughts, those are the ones calling to you to be worked on.

Genesis of new experiences

I recently found rutabagas. Never had one before to the best of my knowledge. It turns out they can be cut like steak fries, tossed in olive oil, garlic salt and parmesan cheese and baked for 35 minutes. They are very good in this preparation.

I never would have tried them if I wasn’t living the keto way of eating.

I never would have tried the ketogenic way of eating if I didn’t have cancer.

Interesting how that works, isn’t it?

There are so many things out there to try. As a family we go on adventures trying new fun things all the time: rock walls, gravity ropes, bakeries, gas tank destinations, you name it! We seek them out and give them a try. It is a lot of fun and we learn quite a bit with each adventure.

We recently made mustard for the first time because of a book I am reading, It consists of soaking mustard seeds for a few days in vinegar and water put the mixture in the food processor with seasonings of your choice until you get the consistency you want. Who knew it was that easy? It is so delicious, we are going to use it as the glue for seasoning our Christmas ham.

I wouldn’t have gotten that book if I didn’t make a new friend 23 years ago.

I wouldn’t have made that new friend if I didn’t go to graduate school all those years ago.

Admittedly, graduate school is infinitely better than breast cancer, that is not the parallel I am trying to draw at all. I am always amazed when I trace back an experience to the one moment that led up to that.

It’s a wonderful puzzle to try to solve the seemingly small, insignificant event can lead to something wonderful. It can be a dark rabbit hole to try to find the moment that led to something horrible. Just remember the horrible moment is going to evolve and lead to something better, this, too, shall pass.

For fun, if you have never had a rutabaga or made mustard give them a try, you never know what it might lead to!

Happy New You

Yesterday I had a appointment with the breast specialist, the surgeon who performed the mastectomy and removed the cancer, I didn’t have any of the usual dread leading up to it. When we were wrapping up we hugged and she said Merry Christmas and Happy New You, chuckled, looked at me and said Happy New Year to the new you!

Each year about this time I reflect on the year, sometimes a little more than a year. The past year was very full, largely comprised of trying to get back to normal after treatment on many, many levels.

A childhood family friend used to say how you spend New Year’s Eve is how you will spend the year. I brought in 2019 with my family, great friends, a fantastic fireworks display and serious vomiting. This may be the best way to describe how 2019 went.

2019 is cancer free, my health is at an all time high, my weight is at an adult low, a definite firework! My family has been able to start to feel a return to normal, definitely fireworks! We have been able to start the path to a non-profit, Survivor Sherpa, to help other women going through treatment, an absolute firework! The amount of unnecessary stress in my life has fallen to a low I never dreamed imaginable, super duper fireworks!

Getting here was a bit of a vomit-pocalypse. No need to rehash all of that, read and to get a feel for what happened. The wheels are back on, waiting is over and those are important memories now, huge fireworks.

It has been a wild ride, I don’t know when to pronounce it fully ‘over’, as a precaution I am keeping my hands and feet in the vehicle until it comes to a complete stop. Maybe when the bills are all paid and I no longer have to take tamoxifen. I do know that being past the surgeries and treatment– especially the side effects is a fabulous firework.

Being able to appreciate all of the positives and being able to help others in this situation is a wonderful thing and this whole experience has made me a new me. When my doctor said Happy New You, it seemed much more meaningful than a simple mistake. I really am a Happy New Me thanks to all of the experiences of 2019. Here’s hoping 2020 is a little more level, or maybe for the highs are much, much higher and the lows are not anywhere near as low.

Merry Christmas and Happy New You to you!

Keto with friends

Chemo sucks, it really, really just plain sucks. My oncologist said that I needed to lose weight in order to reduce my chances of cancer coming back. I certainly don’t want to have to deal with cancer again, and I really don’t want to go through chemo again, it sucks. Doing everything in my power to help reduce the odds seemed like a no brainer.

I have dieted in the past with varying degrees of success, always losing some weight and sometimes gaining it right back. While reading about how to lose weight, get back to being myself as quickly as possible and reduce my risk of cancer coming back I came across something called the ketogenic diet, .

Two of my friends were doing the ketogenic diet, it is really more of a way of life, and they were having great success. My husband was in for whatever diet I picked out because we know first hand that life on a diet is easier when we both are doing it. He was fully committed when he found out that bacon and other meat were completely ok.

We found There are how to videos and meal plans and recipes. It is almost difficult to get it wrong when you have good support like that. They even have a facebook group full of people learning the ketogenic way of living. Very supportive and full of helpful tips and tricks. It’s pretty cool to see other people’s success stories, as well as seeing the answers to questions and concerns similar to ours.

We have all of the ingredients for a successful diet in this case a lifestyle change: strong motivation, excellent support system in both our neighborhood and online, and clear instructions and guidance how and a bonus in that the food matched our palates and lifestyle. What more could you possibly ask for?

We have had tremendous success eight months into this. I weigh 25% less than I did this time last year and am in the normal BMI range. My husband weighs almost 20% less than he did this time last year and is closing in on the normal BMI range.

We have fun dinners with our friends where every dish is keto friendly and no one feels deprived or hungry or like they are missing out on ‘real’ party food. We all feel very good the next day, too! Not bloated or sluggish or anything else that a night of excess can make you feel like. Because it isn’t excess, it is what is working for us.

Maybe eight months isn’t a long time in the grand scheme of time, but I can tell you this, I have never been completely faithful to a ‘strict’ way of eating for eight months in my life with no slip ups, restarts or do overs- ever. Granted, the motivation is much stronger than it has ever been in the past. The food, support system and resources for this way of life are making it so much easier to stay faithful, too.

Having strong motivation, a great support system (personal and online), and good clear instructions seem like a sure path to success, I am going to use this template for other areas of my life, maybe you will find success with it, too.


Cancer and togetherness

Parenting during cancer is a challenge like no other. A lot of things take a back seat for a lot of reasons but children cannot. There were a few things that fell through the cracks caused by cancer, our daughters always came first.

We like to play games. Board games, video games, card games, you name it we like to play it. We have a game night about once a month. It used to be more frequent, but the girls are getting involved in more and more activities. We have a lot of fun with the games and have great conversations while playing them.

We like to watch movies, either in the theater or at home. We even have a large outdoor screen to have a drive in movie theater experience. We have movie night about once a month, maybe a little more often. It, too, used to be more frequent, the girls’ activities again. We always have great conversations after the movie, sometimes during them depending on how good the movie is.

I wasn’t much fun while in treatment. Games were more difficult for me to play. The medications caused a lot of mind fog, memory and attention issues. It was easier to play video games, but I often just watched them play and join in the conversation.

Watching movies was difficult, too. I tend to fall asleep during movies, even before cancer if the movie wasn’t very good. The girls were very kind and would stop the movie if I was the one who picked it out, or fill me in on the part I slept through some time later. I asked them once why they kept watching the movie and not go do something else more fun. They replied all at the same time that they just liked hanging out with me. Just spending time, being close was the important thing, not the movie.

Well, how do you keep a dry eye when your kids say something like that?

We all pile on the same couch under a couple of blankets to watch a movie on movie nights. Some of the games can get pretty cut throat, we don’t sit as close during those, but the silly ones, we are often in each other’s pockets. It’s nice just to be close to one another, together.

We genuinely like being together, bad movie, silly game, great movie, even better game, it was really just about being together. Even though cancer was a very different kind of adventure, we were going through it and getting through it together.

Seeing the beauty

I don’t spend a lot of time in front of the mirror when I do look at myself it is usually with a very critical eye. This new wrinkle, that new gray hair, this bit of extra weight. I read an article about treating the image in the mirror like someone you love instead of something to critique, it has made a significant difference in my outlook and my inner talk.

Cancer wreaks havoc on all aspects of your being, there is no other way to say it. My identity took a major hit, still is taking a major hit as a result of dealing with cancer. I stopped looking in the mirror when I had the mastectomy. Of course the mirror in my bathroom is 12 feet long and four feet high, making it a bit of a trick not to look.

I became pretty skilled at not looking for about seven months.

I bloated big time and lost my hair with chemo. Every now and then I would look at the sores in my mouth and manage not to see the whole me. It was painful, not just from the sores, but to see this person looking back at me not resemble the person I was used to seeing even if I was overly critical towards her.

I was worried about what this attitude and these actions were teaching my daughters and set out to revise accordingly. Project status.

Identity, what does that mean exactly? Oddly, when asked to list positives about myself, I never include anything about my appearance, this gave me pause. If my appearance didn’t define my identity, why was looking at myself in the mirror such a painful experience?

One day I caught a glimpse of myself and forced myself to look, really look. I was amazed at how much I looked like my mom. My mom is one of my favorite people to ever exist and I loved her very much. The parts that don’t look just like my mom, look a lot like my dad, another favorite of mine. How can I be so critical when I look like two of my favorite people?

I read an article the suggested instead of being critical you should treat yourself how you would treat someone you love in this situation. My first thought was I’d give my mom a moisturizing facial and moisturize her neck, I remember how much she hated having dry skin. I did both things for myself and felt better. It really felt like I was doing something for her.

My mom always told me to look for the beauty in things, not the classic physical beauty but the underlying beauty. In this case I believe she would tell me to acknowledge that my body was strong enough to handle chemo and start the healing process, a very beautiful thing. This made me start to become way more grateful and infinitely less critical looking at myself in the mirror. I still have room for improvement but I am getting there.

Now when I start to pick and fuss at the lady in the mirror I take a step back, do the Wonder Woman pose and tell myself how grateful and wonderful I am for what I have come through, what a beautiful thing.

When doctors disagree

Sometimes it feels like you are just along for the ride when you are navigating the follow up after dealing with a critical illness. It isn’t like the runaway train or tornado of the illness, not at all. It is just like you are a passenger along for the ride, sometimes there is disagreement among the drivers, in this case the MDs.

My husband took me to the hospital for a procedure my surgeon ordered recently. They called to ask us to come in a little earlier, no worries, we can come in earlier. We arrived early for the early time. The process is you check in at the main desk, they call you for the insurance and ID bit.

The insurance and ID bit is where things started to seem a little weird. They didn’t know what to call the procedure my doctor had sent me there to get. We sat there and waited until that was hashed out. It took about 12 minutes.

After that I went to sit in another area to wait to be called. They called me back and had me change and sit in another waiting area. This wait was more than 20 minutes, very unusual, so unusual I was about to check to see if I got the directions wrong. About then they came to get me. I glanced at my watch, this was starting later than the original appointment and we arrived early, very unusual.

Two nurses did some preliminary testing and left the room for about 20 minutes, very very unusual. I took a little nap, there is nothing else to do in the dimly lit room and they put a warm blanket on me.

When they came back with the doctor they informed me that they would not be performing the procedure and why. The doctor was patient explaining it to me, said he couldn’t reach the surgeon and since he didn’t see the need I could get dressed and go home. Well that capped the unusual-ness of the day.

They, the two nurses and the doctor, said that they tried to reach my surgeon to let her know but couldn’t get a hold of her. The doctor assured me that this was ok, his opinion matched that of another doctor he consulted with, he’d let my surgeon know when he could get a hold of her. It was all very strange and completely different from anything I had experienced. I sent a text to my doctor informing her of what was going on, hoping to catch her before I left. She was in surgery at the time so no reply. I got dressed and left, we were there for two hours with nothing to show for it but quite a bit of confusion.

She replied after she was out of surgery, a few hours later and said was disappointed that her orders weren’t carried out. She said she would take care of it, clearly irritated.

As a patient what do you do? I couldn’t make the doctor do the procedure, my opinion didn’t matter at all. They looked like they felt they were doing the best thing for me, how can you argue with that? I want the best and most appropriate care possible.

To date the procedure hasn’t happened.

Weird things happen in life. I imagine that for every one weird thing like this you see, there must be more happening behind the scenes. It is reasonable to think doctors have differences of opinion just like any other people do. For some reason I assumed they always agreed and had an idyllic peaceful coexistence in the workplace. This experience doesn’t exactly shatter my assumption, but it does give me pause.

For now there is a new driver and my surgeon and I are passengers along for the ride. I have to trust that we are going in the right direction.