What you know

Ever felt like you didn’t know what you didn’t know? Or that you only knew enough to be dangerous? That is the feeling when you get a cancer diagnosis, amplified by a substantial bit.

The big thing about all of this is that you don’t know a lot about the diagnosis, but you are the premier expert on yourself. That may be comforting to some and frightening to others, but no one knows about you like you do.

Armed with that knowledge you have to advocate for yourself. Even if you retain the services of a medical or health advocate, you still have to advocate for yourself through them or educate them enough to do it with you.

You have undoubtedly fought for yourself at some point during your life, advocating for yourself is not a fight, save that for cancer. This is building a bridge, a two way form of communication between you and your medical team so that you get the care you need in a way that you will be both healed and satisfied as much as possible.

This is the most important bridge of your life and you can employ as many people as you need to in order to make it happen. Your spouse, trusted friend, family, adult child. Anyone that you know both knows you and has your best interest at heart. I didn’t do it alone, I needed my husband and a few trusted friends.

I have described cancer as a runaway train and a tornado, it truly is, with a good strong bridge to your medical team you can inform and be informed during the crazy ride. It starts with questions. Ask all of your questions, even the questions you know there are no answers to because you are sharing how you think, what you are thinking about and what is important to you. Listen to the answers, really listen, and you will learn how they think, what they think about and what is important to them. The bigger the understanding between your thought process and theirs the better it will be.

While searching for that understanding, remember that they are part of team you. You are in charge of yourself and you make the calls about your own health. If at any point you need to pause-do it. If you need to do more research-do it. If you have any doubts, do what it takes to ease them, second opinion, more conversation, referrals, references, just do it. Doubts and unease sap your energy for the fight against cancer, you need all of your energy for that. You’ve go this, be your own best captain of your advocacy team.

Cake and more cake

Our family has a birthday season. Starts mid October and ends with the New Year. In that time we eat four birthday cakes, celebrate Halloween, Thanksgiving, Christmas and New Year’s Eve. That is a lot of celebration in 74 days. We typically celebrate with food and dessert. The bigger the birthday the more outrageous the dessert.

This year my husband and I started the ketogenic way of eating. I can honestly tell you there isn’t anything I miss that isn’t keto friendly. This is mostly true because the memory of chemo is fresh and partly true because my husband and I are adventurous cooks. I sometimes miss the ease of calling out for pizza, but cheese and olives are a pretty reasonable substitute and just as easy, and if it is pizza I am looking for, I just throw in some pepperoni and dinner is done.

It’s been 7 months. I have lost a good bit of weight and my BMI is now in the Normal range. I celebrated the heck out of that. My waist circumference is less than half my height in inches, turns out that is an important health metric and I feel better overall.

We are now in the middle of birthday season.

The first birthday, our oldest, I just skipped the cake, it was all good, no worries, not an extra special birthday. Our youngest has the second birthday. I purchased Rebel ice cream and ate that when everyone else ate fancy cakes, it was a big birthday, two whole hands! I easily skipped the Halloween candy and replaced it with ice cream and gave the kid’s candy away after a couple of days, they had eaten all of their favorites by then. Thanks to post Halloween sales, it came back.

Just for fun, I also had surgery, with IVs and pain meds, plus they gave me crackers which were not keto friendly. A fair trade for an easy uneventful surgery.

My husband had the third birthday of the season. I purchased more ice cream he made a keto chocolate cake just for me since he is skipping keto for the season. I had the last piece of his cake the day before my birthday. We bought a keto chantilly cake with berries on top from a local restaurant. Easy and yummy!

I have had a piece of cake a day for nine days straight, a couple times with a scoop of ice cream. I haven’t gained a pound, been bloated or sat around with an over-stuffed feeling. There has never been a time in my adult life where I could have a piece of cake a day without any of those things. It makes me giggle to think that maybe I had my cake and ate it, too!

Thankfully my brain/mind fog and memory issues are still heading in the right direction as well. My blood work has all been good and am only on Tamoxifen as far as prescription medicines go. I can’t ask for much more than that. So much to be thankful for during this celebration season.

Keto has really helped me get closer to being back to me. If you are interested go to dietdoctor.com and watch a few videos to see if you can benefit too.

https://www.supportful.com/survivorsherpa

One of those days

Today we got a flat tire on the highway, caused a back up due to gawkers, my apologies to all who were impacted. My husband put the spare tire on while we on the side of the road in record time. Less than an hour later the car battery died. My husband had to walk across a busy retail shopping street, on Thanksgiving weekend, to get a replacement battery. A quick trip to two stores turned into a trip the Gilligan Islanders would be pitying us for. Everyone has days like this, well, this was just an afternoon, but still everyone has this happen.

This is part of the clean up after cancer. The car wasn’t exactly neglected during everything associated with cancer, but it wasn’t exactly the same kind of loved it was prior to cancer. It certainly didn’t receive the same amount of attention and something had to give–the tires were patched. When the battery died last year we got a jump from a nice gentleman in a Jeep also visiting the oncologist and moved on. We didn’t think about the tires or the battery again…until today.

Life goes on, the kids are a year older, and they lived a year, or more really, during the past year. At least once a week I will refer to something two years ago like the last year simply didn’t happen. It is weird, if you play video games, it is almost like a mini game within a bigger game. I keep expecting that life outside cancer was paused while we were in the cancer mini game. Or like putting down one good book halfway through and reading another scary novel completely and, when done, picking up the first book again right where you left it.

When I mention this to medical professionals, they say it is normal. They compare it to how your kids grow up but you expect other kids you haven’t seen in a while to be the same age as when you last saw them. A regular phenomenon. It’s just something that happens even if you try to stay on top of everything, you just can’t. Be kind to yourself.

When you get caught with a flat tire because you couldn’t deal with it real time in the cancer mini game, it is a shock. Like a big smack in the face showing you another thing you missed over the course of the year and there is still a lot of clean up to do.

While it is a smack in the face, it is a great reminder that you made it through. Even though it is a nuisance, sometimes an unplanned expensive nuisance, the alternative really stinks, be grateful that you are here to help with the clean up.

https://www.supportful.com/survivorsherpa

Word loss & cancer meds

I attended a memory fog class before going back to work. A single class for memory issues makes me laugh, I wonder how many times I went….Don’t get me wrong, it helped, I took notes and brought my husband and friend, between the three of us we got a lot out of it. I keep imagining people taking it on their own and maybe not getting as much out of it. I would think a series would be more helpful and less forgettable. The important lesson is not to be frustrated by the memory events, it doesn’t help.

My main issue is searching for words. At the time I went back to work about one in three sentences had a missing word. Remember, frustration doesn’t help. Now it is much better, about 10 months from the last treatment it’s better but not cleared up as much as I would like. I also have holes in my memory, some things are just missing. Especially things that happened during treatment. The more normal the experience the less likely it was to make it into long term memory. Both of these are as a result of the heavy medication from surgeries and chemotherapy infusions.

As I type this there are times when I intentionally have to type the incorrect word so that it gets out of the way and the right word will come to me. The same thing happens while speaking, I will intentionally say the wrong word followed by “no, that isn’t right” and then the right one will pop right into my head. It is frustrating even though frustration doesn’t help at all.

One day my oldest daughter needed to know the quadratic formula. I was trying to remember and kept stumbling. My husband went to Khan Academy and showed it to her on his phone. Done. I was so angry that I couldn’t recall it at all, let alone as easily as I could before treatment and he was just watching me getting worked up. Our daughter completed her homework. I was frustrated because I think it is cool to be able to solve a hairy quadratic equation with the formula, then plug those numbers in and watch it go. I think that is fun, and now it is gone.

I know that it can be replaced, I learned it once, no reason not to be able to learn it again. Yet, the frustration is real.

I love to teach lean and six sigma classes at work, honestly, I love to teach anything that is going to help my coworkers make their work days better. I was tasked with teaching all of the lab folks the basics of continuous improvement a few weeks after coming back to work. This is by far my favorite thing to do, placing a little tinder and then watching the spark ignite it, it is the best thrill at work by far. I love those lightbulb moments! I was scared that while doing these classes my memory would fail and I’d be standing there without something relevant and useful to say.

The person who tasked me with this also gave me a partner, a great guy with a great attitude and the kindest heart. He was there the whole time, especially when the words failed a few times early on. He did so with a great sense of humor, and each class he would tell me how much better my memory was and how much better my frustration level was. He was my meter and it was great.

The lab folks are fantastic, they taught me a new word. Taught may be a strong word since in full disclosure I had to look it up to write about it: lethologica–coined by Carl Jung. It is the inability to remember the proper word. You know that it is the wrong word, you are not oblivious to the fact that you aren’t using the word you intended–hence the frustration, which apparently isn’t helpful.

My family is great too. They are patient with me and my funky pauses, facial expressions and frustration. Sometimes they try to help, sometimes they don’t. Sometimes we have fun with it, sometimes we don’t. As I read this blog aloud to my oldest she pointed out that sometimes I get angry when they try to help, sometimes I don’t.

The interesting thing about memory fog is when the proper word is missing, or being blocked by the wrong word, all of my curse words are readily available. Seriously, I have not lost a single curse word or its proper application and they are never the blocked or blocking words. Not sure what Jung would say about that!

Be patient give yourself a break, push yourself when appropriate and keep trying. I would say don’t be frustrated by it all, but that would be a challenge since I am still frustrated by it daily. Find yourself a meter, someone who can tell you the truth and are kind. It will get better and that is helpful.

Seeing the Doctor

I am used to being audited from coming up through the lab and then quality operations manager, audits are a way of life. I used to refer to the fall as audit season because we would be audited by companies we tolled for, ISO 9001, 14001 and TS 16949. It was really a way of life, being audited that much is really just another day–with a catered lunch.

After a cancer diagnosis you see medical professionals a lot. Sometimes it is the MD, sometimes the nurse practitioner, physician’s assistant, sometimes the intake nurse, sometimes the phlebotomy crew, X-ray crew, physical therapist, occupational therapist, nutritionist… Much like an acceptance speech, I am sure there are folks out there I missed, my apologies for the oversight I wouldn’t be here if it weren’t for you, too.

There is something especially alarming about seeing the doctor. They are the ones with the news. They are the ones who define where you are in the process. They are the ones who talk you through the decision points of treatment. They are the visits that cause me stress, much stress and dread.

I like them all. I really think that we’d be friends under different circumstances, but right now I dread going to see them for days prior to the appointment. I dread it so much that people notice something is wrong. I try not to, I try to be ‘brave’, suck it up, be strong. But what I really do is cry on the way to the appointment and I even accidentally made myself sick the first time I had to see them all after I was ‘done.’

Going back to work meant that I was done. Cancer was over, my life was going to return to normal. Well, for me that wasn’t really the case, maybe it will return to normal eventually maybe someday. Normal is not going to see the doctor to get some news, make some decision, find out if I am still/again. I was back to work about two months when I had to make my first round of doctor visits. The breast specialist, the oncologist and the surgeon. I am always glad to get good news, but there is something about the lead up to it that causes my system to try to fight something. I ended up sick to my stomach for a few days afterward. Maybe the silver lining is that I got through it without canceling any of them.

Three months later, after seeing the whole host of medical professionals listed above, it was time to make the rounds of doctors again. This time I didn’t get sick to my stomach, it was later in the GI tract. Again, gold star for not canceling? Maybe for different symptoms?

This last time I told my surgeon about my physical response to the dread of seeing them. She suggested that we try spacing them out instead of all in the same week, divide up the appointments, divide up the stress. That is where we are now, I didn’t cancel any appointments, just postponed 2 of them at the advice of a physician, not canceling at all.

Apparently this is part of the process. Maybe not making yourself sick, but the dread. The dread is a normal part of the process. It would be nice to not feel the dread, maybe it is necessary to truly appreciate the non-dread times? I don’t know, but I don’t like it and I feel really stupid when it is over for feeling the dread so intensely. They are all good people, they are really just delivering the findings from my physical health audit. I seem to be fighting, on some level, that this is just the ‘season’ I am in at this time. My favorite part of audits at work was picking out some interesting catering option. Maybe next round of doctor visits I will include a trip to a new restaurant or some such reward to make the whole thing more palatable.

Anger with a side of cancer

There is something very primal felt when hearing a cancer diagnosis. Something deep within, something animal, something… else. It isn’t anger yet, but it is going to be. In the doctor’s office it is just starting to awaken. It starts asking questions, questions the doctor cannot possibly know the answers to. Is it because I am a chemist, been around X-Ray instruments? Handled carcinogens, mutagens and reprotoxins? Was this the reason I had a miscarriage or caused by it? Or that we needed a little help to have children? Why didn’t nursing my children prevent this? Was it too much time in the sun? Not washing my produce enough? Using the wrong detergent? Deodorant?

The interesting thing is that when the doctor doesn’t know the answers, the questions become more frantic and that feeling starts hoping there is an answer because if there isn’t an answer there will be no single place to focus the proto anger and it is growing. It grows the fastest during the quiet alone times. Like the drive to work in the morning, no amount of radio helps and the questions keep coming to feed it.

People want to comfort you, it is a beautiful thing. Comfort you with words, acts of kindness, food, you name it-people want to comfort you. The proto anger is still in there and not interested in being quelled by well intentioned, kind adult behavior. It wants to be released like a tantrum, like the worst tantrum ever. It is not okay to tantrum on people who are trying to comfort you.

People want you to know how much they care. They care on so many levels, it is amazing. They care about you as a person, a friend, a patient, a human, so many levels and it is hitting them all at once as they pour their caring on you. Still the building and growing anger wants to come out. It wants to come out like a tornado, like multiple tornadoes at once, in the same square block or smaller. It is not okay to tornado on people who are expressing how much they care about you.

You know that this anger is ugly and should not be let out. You also know that it is not doing your physical health, mental health and attitude any good to keep it bottled up.

Nighttime. When no one else is awake and you are all alone with your thoughts is a good time to let it out, just do it on paper. I scraped the paper by writing so hard and angrily with the pen. Some parts I wrote nonsense because I couldn’t write as fast as my mind was racing. When I could keep up, it was ugly, angry, spiteful, hateful and mean. There was no one person that was the focus of the spew, there wasn’t anyone spared from it either. I think I found the real question, why now, why me?

Then it ended. Almost two hours later it ended.

When it ended it was a relief, at one point I wasn’t sure it would, that this was how I was going to be forever an ugly, angry, spiteful, hateful, mean person from now on. That was about the time I saw the stacks of pennies under my TV, saw the box of shirts and hats sent with love, and heard my youngest coming down the stairs to our room. I put my pen and tablet down and when she came in I opened my arms and cuddled her all better. Thankfully it all happened in that order, I would hate for her to have come in full nonsensical tantrum spew.

It’s good to get the primal rage out and know that the eruption will end-it does. It really does end. It is appropriate to express it, just choose the least destructive way inthe safest space possible.

I cuddled my youngest and cried softly and she just melted into me for even closer cuddles. She says that she doesn’t remember that night. I hope that is true. I think it would be scary to see your mom like that especially when something startled her to come down in the first place. But the rage was gone, the next day when someone tried to comfort me, there was no war inside. When they showed they cared, there was no bitterness about the need for them to show it in the first place. The whole house kind of felt a peace that had been missing for a few weeks.

I have never gone back to that tablet, I pitched it with the next trash run, pen too, it was nice to have them out of the house. Like if the words and feelings were still in the house in any form they might come back inside me and tear me up some more or find a permanent home.

Every now and then when it is quiet I wonder if there is a piece of it still in there somewhere, but it doesn’t seem to be, for that I am extremely thankful. Letting out the anger was one of the hardest things I have ever done. I hope to never experience that again, I hope that you find your way to let it out so that you can start to heal and experience the good things fully.

What cancer does to you

Today is my birthday. This birthday is very different from last year’s birthday. Last year I had just had the second chemo infusion on my husband’s birthday and my birthday was one of the dog days. One of the days I wished there was such thing as coma therapy for chemo. What a difference a year makes. I vaguely remember thinking that last year, but this year is a much more positive view of things. It is more positive in general. My middle daughter reminded me that cancer changes you, but it is your choice how it does so.

Her example that stopped my heart was that cancer can make you stronger and more open or it can make you close up with fear that it may happen again. She thinks that I am opening up, that while I am scared that it might happen again I am using that for strength in doing my best to make sure that it doesn’t happen because of my choices. She is an excellent partner in all of this. In one post I told you about how she didn’t believe us about my positive prognosis and then she challenged the oncologist on her relative honesty.

She is strong. She is not an in-your-face or a you’re-weaker-than-me strong person. She is strong in that she knows how she feels and what she wants and takes steps to make it happen. She pays attention to what I want and helps me make it happen when she can. As I watch her with her friends, she pays attention to them having fun and is always a step or two ahead ensuring their needs are met all while she is having fun too. She stays the course and makes adjustments early and effortlessly. Except with her younger sister, seriously, she isn’t a saint, just pretty wonderful.

She is part of 4-H and wanted to take part in the egg cookery contest and her choice was to make a keto cheesecake. She chose this because I am living keto. There is some indication that a ketogenic lifestyle can stop a mechanism within cancer cells, essentially starving them before they can organize into a tumor or spread. There is more to it than that, but that is the gist. It never occurred to her not to do something that supported this new way of eating for me. Even when she came in dead last in the dessert category of the contest. She looked at me and said two things: well, someone has to be last and I guess they don’t like keto yet, we’ll show them how good it is.

I told her she had such a good attitude and she stole my breath by telling me that I was showing her how. That this was just a contest, she learned something, had fun and why not have a good attitude just because she didn’t win. She said got it from me that I always tell her that you learn more from things not going right than when they do, and this was just a contest not cancer–besides, this actually did right, the cheesecake was good, it just didn’t go her way in judging. Whoa.

This little pumpkin of twelve years is so strong and brave and cool and she said that in some way I contributed to that. Because I didn’t let cancer shut me down, I chose to stay open, made me stronger. It is so weird to hear her say those things about me when I admire those things about her, and her sisters, and wish I was that way now, let alone at twelve!

All the things she went through in what was honestly a less than single parent household for the better part of six months, just stuns me. The six months after treatment weren’t a picnic either, there is a lot of cleanup after the cancer runaway train of a crazy tornado, we’re still cleaning up. She is amazing, and she recognizes the changes in herself, she is stronger, more open and way more secure in what she wants and how she feels than most adults. She is not even a little boastful about this, she takes this as a matter of what happened because of the circumstances not that she did anything except make the choice to stay open, be strong, learn from this and not to close herself off.

What a difference a year makes.

Happy birthday to everyone that shares this day with me, I am glad to be celebrating it! We will make up for last year’s seriously lack of celebration. We will continue to choose strength and openness, the alternative just isn’t appealing to any of us and I hope it isn’t to you either! Keep reminding yourself what a difference a year can make.

If you want to help, please go to https://www.supportful.com/survivorsherpa and help us make it easier for other people going through cancer and stay open and strong so that they don’t have to journey alone and can thrive after cancer.

When the fighting re-starts

An interesting phenomenon occurs when there is cancer in the family, the push-back and bickering and fighting stops. It just stops. You don’t miss it at first, you don’t miss it at all

We have three loving and wonderful daughters. They pick at each other, they fuss and fight and are just terrible to each other at times. Who was going to fold the napkins while setting the table? Who was going to vacuum around the cat boxes? Who was going to sit where while doing homework? Who was going to use this bathroom instead of that bathroom? They would pick and pick to the point where you had enough.

It just stopped. They did things in silence, or worse, whispers.

Apparently this is normal. It is also very strange.

My daughters will talk you ears off. Tell you every single detail about something they love or just experienced recently, it could be anything. It is usually a single energetic sentence of a wonderful story that can go on for hours. I love them, they are the best part of any experience. All you have to do is ask what they liked best and they are off. If you ask them what they liked least or what they would change or what they wished would have happened you can get a very lengthy high energy monologue.

Not those days, not when I was going through cancer treatment, it all stopped.

We went through a book called 100 Days to Brave ( https://www.amazon.com/100-Days-Brave-Devotions-Courageous/dp/031008962X ). This helped us keep some of the lines of communication open, helped to have a time each day to check in, helped us come together as a family. It was a sort of a neutral conversation starter. Who knew that this family would ever need a conversation starter??

Treatment ended, another surgery happened and one day last spring right before I went back to work the younger two started picking at each other over who would use a salad fork. We were short one regular fork for dinner and no one would wash one by hand. They argued like top lawyers in front of the Supreme Court. They each had a passionate argument for why they should get what they wanted without having to do anything they didn’t want to. It was music to my ears.

Later my husband gave me a little crap about my hats taking up so much space on my dresser. They should, I had them in three distinct piles naturally! Again, music to my ears. I was not passionate about my hats or how they had to be, I just knew they didn’t have a permanent place in my life. I wouldn’t even give them a semi-permanent place in my house. He didn’t really care about how I stored the hats, this was the fourth month wearing them, well on the down slope of needing them. But in that moment he had a need to share his opinion about how, when and where my hats were stored. It was nice.

Honestly, I do like hearing the kids get along with each other much more than listening to them fighting and being little craps to each other, but there is something missing when they are not being that way. I hope and pray that they grow out of it, but to have it happen suddenly and for a critical illness—it felt like a cancer panther had just entered the jungle of our home and these silly monkeys went silent to protect themselves from the predator.

The palpable forced, scared silence is not a good feeling, but when it ends and the childish fighting re-starts, in any of us, it’s a little bit nice. It’s nice to know that they are sisters behaving like sisters again, hopefully they grow out of it, when the time is right, not because there is something worse happening to put an end to it.

Adventures in Chemotherapy

After the initial surgery my cancer was typed and my nodes were checked. I had a micromet in a single node. That meant chemotherapy. My initial plan was not to get cancer, second was to only need surgery. The results made me think that maybe I shouldn’t have opinions about what was going on in my body anymore, it simply wasn’t going along with the plans.

I knew people who had gone through chemotherapy, it was brutal on them and I didn’t want that for anyone, including myself. There was time between knowing I needed it and actually getting it. First thing was to get a port put in place, that required surgery.

Getting a port wasn’t as scary as getting the mastectomy, but still a little scary. It was the perfect time to search online for what I could do to prepare for chemotherapy and how to make it less brutal.

I learned a few years ago that you don’t Google your own symptoms, unless you want to self diagnose sudden onset amyotrophic lateral sclerosis, it really isn’t a thing. A few years before that I learned that you shouldn’t Google your child’s condition. Our oldest was born with shoulder dystocia and our youngest was born with hip dysplasia. It was very easy to pick out the friends and family members who Googled the conditions and those who didn’t. Both daughters are completely and wonderfully free of any trace of their conditions today.

This time when Google-ing I was very specific. I typed in the specific medications and what I could do to lessen the effects and to protect my heart during treatment. It turns out that it was all very similar to what my doctor told me. Stay hydrated, stay on top of medications no matter how good you feel, get plenty of rest and keep moving, it helps get the medicine through and out faster, also be prepared for too fast. There were a few supplements I could take, B complex, vitamin D and omega 3. In addition to the things my doctor prescribed: Claritin, Tylenol, prescription pain meds and Zofran.

The first treatment was on a Friday morning. I sat in the waiting room reading a story on my phone from Facebook about a woman who lost her brother and how her friends helped her. It was so sweet, I was sitting there crying as I read it. My husband wasn’t worried, this was at least a weekly occurrence.

The intake nurse called my name and was worried about my stress level this being my first infusion and all, especially since I was crying. I blamed Facebook. He took my phone away, closed the story and handed it back to my husband, talked with me for a few minutes, took my blood pressure and everything was ok. He looked at my husband and told him to make sure not to let me read any more stories like that for a while.

Another nurse came in to give me my blood results, all good and ready for infusion. That wasn’t surprising since nothing had happened yet. She made sure that I had taken Claritin, used the foam over my port and was well hydrated. I told her about the supplements and she kind of nodded and moved on. She ended the visit and sent me to the infusion center across the hall.

We went to the infusion center, checked in, got a bracelet and I waited without my phone. My name was called. We walked to the back and were put in a little seating area with a couple of comfy chairs and a TV. They gave me a warmed blanket and I watched a video about one of the medicines possibly exploding my spleen, that may not have been the sole intended message, but it was the one I latched onto for some reason. The infusion was about to begin.

Two nurses came to my pod in all sorts of biohazard gear. That is a little intimidating and a little scary to think that they are about to put something in a port that has direct access to my heart while wearing hazmat gear. All of the nerves that I had thought I dealt with successfully came flooding back. I was worried about my husband sitting there in regular clothing. In one moment seeing them in hazmat gear I was completely undone. Thankfully they didn’t need to take my blood pressure right then.

They started with a steroid. I really like the energy from steroids. If you are allowed to have a favorite medicine, mine may very well be steroids. Next was an anti nausea medicine. After that was the first of the two anti cancer medicines. Finally, the last one. They checked in on me between each change of medicine and at the change. Nothing untoward happened. It was pretty uneventful, except they brought drinks and snacks like when donating blood, but different. They put a device on me to deliver medicine 25 hours after infusion, it was kind of cool and it blinked green. Pretty bright at night. Between the steroid and the blinking I didn’t really sleep.

The next day I went about my business, staying hydrated, moving around, I cleaned a little, took my meds as prescribed, took my supplements per directions on the bottle. I started beeping. I was in a half asleep state and wondered where it was coming from, realized it was me and briefly considered that it was my spleen beeping prior to explosion. Thankfully the blinking changed alerting me to the actual source of the beeping. I put two and two together and started waking up a bit.

After it stopped dosing me, I left it on for an hour and then removed it. It was an interesting device, kind of cool, would have been cooler if it was for something else. I wasn’t sure of how to dispose of it, so I completely disassembled it and bent the needle and put it in a lemon rind to not hurt anyone. Briefly considered if disposition was in the video and thought they should put that well before the exploding spleen section so people like me would remember how.

A few hours later the steroids had completely worn off or the new meds kicked in or I just developed sudden flu or all of those or something else. I went to bed. Woke up the next day a little worse, this continued for a couple more days.

I took notes on my symptoms, looked up ways to alleviate them for the next infusion, came up with an adjusted plan and was ready to execute for the next infusion. This routine was repeated twice more. I took notes on the fourth infusion because that is who I am, not to prepare for a fifth–there wasn’t going to be a fifth. I asked my oncologist if there was something else I could do, she didn’t have anything else for me to try. Essentially chemo is brutal, stay well hydrated, stay on top of your meds, get plenty of rest and keep moving despite just wanting to be in a coma for the duration of the symptoms.

That was the first incarnation of Survivor Sherpa. I wanted to open a place where we could keep people undergoing chemotherapy in a coma during the worst days of the side effects. You know, because that is totally reasonable, apparently Robin Cook had an impact on me growing up. Thankfully we worked through the bad ideas and kept going to the good ideas and the version that Survivor Sherpa is today. Where we want to help people prepare for surgery, chemotherapy and/or radiation, whatever their treatment protocol. We want to help them prepare for and get through through treatment so that they can thrive after cancer. You can help make this a reality-visit https://www.supportful.com/survivorsherpa to donate if you would like to help us too.

Second Opinions

I didn’t get a second opinion when my doctor gave me the cancer diagnosis. There were a variety of reasons, one was I pretty much knew when I saw the dent in my breast it was going to be cancer. Another was the doctor and my husband seemed to hit it off and that really reassured me. The third one is super silly, they gave me a flow chart with decision points printed in color and on card stock three hole punched in a binder.

Now, if you have ever posted anything on a bulletin board, you know that plain black and white text is the lowest form of posting. It pretty much let’s everyone know that passes by this is an ‘if you are that bored standing here’ posting. When I had direct reports, if i needed to do due diligence but didn’t really have an opinion about how they carried it out or it was common sense, it was posted in black and white plain text nothing fancy.

When I really wanted to get their attention, it would go up in color, with a pertinent picture. This was something major, where either I or the management system had a strong opinion about how it should be followed and that it did indeed need to be followed. Sometimes they would have to come by and sign or initial that they read it. After everyone was accounted for, it would come down.

The next step was to laminate it. In color, with a picture and laminated, that was the trifecta of importance. My guys knew that this was to be followed to the letter and that if it wasn’t we were going to have a meeting about it. That was the deal, I would post things on the board, have casual individual conversations about the topic and not have a meeting. This was never spoken, but they were all chemists and I am a creature of habit.

Since my doctor had a binder to hand to folks with a breast cancer diagnosis, I was reassured. Seeing the flow chart in color on card stock reassured me even further that this was a tried and true path, well tested and effective. She quoted some statistics, I don’t remember the exact number, but I do know that it was well above the number that would have given me pause.

What sealed the deal was that she would call me herself with results or changes. She didn’t have her staff do it, they were great and kind and compassionate folks, but she would do it herself. When she did so, she would refer back to the chart, often give me time to get it so I could look at it as she was speaking. She would call when she knew and didn’t make me wait until the next appointment.

We got lucky knowing the right people who recommended her. Of course, the folks that recommended her went up in my book. I have recommended her twice myself, and will continue to do so, she is great on just about every level, you know, considering. While I thinks she is great, I hope that no one has to meet her, but if you do, know you are in good, kind, compassionate hands and probably won’t want a second opinion either.