Are we there yet?

I've been receiving a lot of great support via Facebook, email, texts, etc., and I love it. I love the random reach out: "Hey, haven't talked to you in months but just wanna check in and see how things are going'? It's so cool to me that out of nowhere I manage to streak across someone's mind with enough umph to generate a thought and maybe even a message via the internet. Life is busy and my age, experience and people and logins and passwords tend to pile up. How cool is that when you pop up in someone's head at random?

Trust me it's cool.

I won't dwell on my situation but a lot of people are either tentative to reach out, imagining me parked in front of the porcelain bus with goobers coming out my eyeballs or peacefully slumbering in bed like Rip Van Winkle waiting to wake up after the crisis of this cancer business. It's a pretty big continuum, you must admit. People handle personal challenges in different ways. Once the initial shock of diagnosis, worst case scenarios and treatment options wore off, it was back to life as usual. Well sort of, only with different goals. If you wonder what I'm going through, maybe this post will clear that up a bit.

First, I do a lot of virtual work. You know, Facebook, Email, Texting, Movies, Netflix.... Thank goodness for technology! I stalk all of my friends traveling to Paris or Park City or wherever. It conjures up memories of great times had in those places or it puts another destination on my future bucket list. I might even engage in some surly post-election debates just to see if I have the brain cells to stand on my own two feet. So far so good although given my situation, not to many people have accused me of being dense for fear of being cruel. By the way, thank you to all my smart friends for cutting me the slack.  And that's my life. It's great. I am charged with nothing but surviving. It's pretty cushy actually.

Second, I manage the unpleasantries. These include daily bloody noses, of unknown etiology. They are minor but they are usually most prominent when I change into a clean white shirt.  Then there is the peripheral neuropathy which is a nerve issue that causes the hands and feet to sort of "prickle." The hair loss is an easy one but the fingernails, toenails and cuticles are tough to manage. They don't fare well in a cytotoxic host and that also causes some maintenance issues. Luckily, my platelets remain within normal levels, so management of peeling skin and bleeding nasal passages is not life threatening. I also suffer cold intolerance which is not handy as we come into wintertime. I'm often dressed in multiple layers including fleece, down and furry hats. I am often mistaken for a homeless person or a Russian tourist.
My second least favorite side effect is the ever present mucositis. Cancer by definition is a group of rapidly dividing cells that grow out of control. The gastrointestinal tract is composed of rapidly dividing cells that the body is constantly producing. Chemotherapy attacks rapidly dividing cells (cancer and regular) and obliterates them, so the gastrointestinal tract is constantly turning over. Over time, this causes some rawness and difficulty, hence frequent nausea, vomiting, and discomfort. It's hard to swallow and digestion is a new experience that ends with more unpleasantness on the other side. I am happy to report that I still have not vomited from chemo thanks to the excellent treatment I am receiving, and the counseling the nurses provide. Most of this is centered on how to eat, when to eat and how to keep from slipping into the nightmare of a digestive system that shuts down completely. The metallic tastebuds don't help this process and there are days when food is downright repulsive. I have to coax my digestive tract to cooperate most of the time with a teasing of a cracker or a bowl of broth. I am thus far, successful (lucky is a better descriptive), but I fear that 9 more weeks will have increasing difficulties with eating.

My goals are to keep my white cells working, my platelets up, my neutrophils down and my liver enzymes strong and healthy (Milk Thistle tea anyone?) and WITHOUT Big Pharma's assistance. I do this through nutrition, drinking lots of water and avoiding anything that messes with my brain, my liver or my lungs. It tends to be a full-time job. I could take the easy road. I am prescribed a cornucopia of anti-nausea medications, pain medication, neuroprotective meds, steroids, anti-inflammatories and anything else I want, which includes the countless offers of Cannabinoids and their varying dosages and  delivery systems. Yes, I have those too, and for now, they are for emergency use only.

Why?
Faith, but not the faith you think.

The human body is an amazing organism. It can adapt to the harshest of conditions. Right now, I am asking it to adapt to being poisoned on a weekly basis. On Toxic Tuesday,  I get pre-meds (medications before the medications!) to reduce the potential sensitivity issues that the poison instigates. These include IV Steroids, Benadryl and Pepcid. It jacks me up and makes me restless. I call it my weekly Red Bull and Vodka. After that, I get the chemo poison. Every third week, I receive two more medications that attack my cancer cells directly via an antibody treatment. Side effects aren't awful but the fact that they are infusing more chemicals into my system means my body has to work overtime. If you consider that all of these drugs are killing cells, both my good ones and cancer's bad ones, there's a lot of bio-garbage swirling around my system. I'm sure you can understand why I really don't want to take any other chemicals with differing side effects, to manage the chemicals that are trying to poison me. My body can do this on its own as long as I treat it gently and maintain FAITH. This means no stimulating inflammation of any kind. Training is out. Exertion is out. Sugar is out.

Of all the effects, it is the fatigue that reminds me, daily, that I am in treatment. Some days, I can go a full two hours and others, I do not make it out of bed. I have tried dogged, stubbornness to push through these days and despite my efforts, I sink deeper into a hole of pseudo-paralysisand ultimately defeat. Fatigue is not "sleepy." It is not "tired." It is as if someone has placed the entire world on your shoulders, turned up the gravity and said, "do twenty jumping jacks." It is the equivalent of being 9 months pregnant, dehydrated, and climbing Everest at about 20,000 feet. It is crippling exhaustion that accumulates without recovery. 2 hours of overdoing it buys me a full extra day in bed. Napping doesn't help because it's not "tired" nor "sleepy." It is paralysis. It is a cruel penance for a regularly active person and a lesson in humility.

The world spins wildly outside of my bubble. My girls have their marching orders for school and soccer and voice lessons and photography and community service and Marek continues to work while shuttling kids in between conference calls. It's hard not to get sucked in. It's hard to say no while they all toil and scramble to meet their needs, and I have to remind myself that rest has value.

All of this works hard on my psychological outlook. While I work through the week to maintain nutrition and recover, the next treatment looms. Just when I cajole my body into recovering from the previous Tuesday's poisoning, it's time to go back and start over. Each week the climb gets a little harder. I have ten more chemotherapy treatments, so the count is on. Scans in March should tell my fortune for longevity. Most recent scans confirm at least another year if not three. I'm shooting for five and hoping for ten. For now, I'm just happy to get to Monday.

Wacky Wednesday

It's wacky Wednesday! The day after treatment is always a fairly good day because I'm still riding a steroid high (included in my pre-chemo cocktail of meds that I refer to as my "red bull and vodka."), so I have a little more energy and lot less misery. Today is the day to get things done because "Throttled Thursday" comes quick and I am rendered useless for a good three days.

I am back in the thick of it, and settling into a routine. I can expect that Thursday, Friday and Saturday are going to suck, and I can plan accordingly. Last week, I got the triple header which on top of chemo, included the two other drugs I will get indefinitely that are specific to my brand of cancer. They have fewer side effects but even so, I have a hard time recovering from all three. It's a good thing I partied in my 20's because all of this chemical mayhem doesn't seem as scary as it probably should. Another bad night at the bar, only this hangover lasts a few days.

We are settling in with the new news of a February finish line. The holidays will go quickly, January will start with a bang and before we know it, February will be here. 99% of this is showing up. I just have to show up and do the work. Marek has made Toxic Tuesday as pleasant as possible by signing up girlfriends to drive me to San Francisco and back. It never disappoints, and I can combine a little psychological therapy with my chemical stuff. It's a big win, because riding with friends gives me some time with them that I would not get otherwise and I don't dread Tuesday as much.

I won't lie. Even with the help on all fronts, we are tired. December's scans gave us GREAT news and a ton of hope, but up until then, the stress was fairly palpable. Too many what-ifs and worst-case scenarios. The news gives us a chance to plan just a little further down the road than we thought, and that has created a collective sigh of relief. However, I will not be duped into thinking that "I've got time." Both Marek and I have shared our fear about slipping into the regular status quo of life once chemotherapy ends. We have been working and saving for a retirement together that may never come, so finding a lifestyle that squeezes in those bucket list items while still keeping the lights on at home is challenging. I live in 3-5 year increments. I don't expect more than that and I want to get my money's worth (or at least my insurance company's money's worth), but you can't just drop everything and run to the other side of the planet without means.

After treatment, I anticipate being very capable to enjoy activities like hiking, climbing, kayaking, skiing etc. That won't always be the case. There may come a time when fighting cancer is all I can do, and that will limit quality of life significantly. Carpe Diem is a mantra for a person fighting terminal illness. You never know when you are going to have a full head of hair, a working digestive system and the energy to paddle around an island. It's easy to kid yourself that you are "going back" to who you were before treatment. Not so. You always move forward in a new paradigm. I got a lot of great mileage after my first round with this disease. Lots of great adventures and we took advantage of every moment. #LivelikeTori has grown out of this "say yes" to everything that comes at you, and make it happen because tomorrow is uncertain. With limited financial resources, that's tough to do on a regular basis. Right now, Marek is managing his full-time job, taking care of me, taking care of our kids, fixing anything that breaks, driving kids to soccer practice and voice lessons, managing medical bills and insurance claims, keeping the lights on at home, and trying to see what his life looks like 5 years from now. AND in a karmic act of cruelty, his best friend is fighting Colon Cancer.  I think this is why adding three more cycles to my chemo regimen affected me so greatly. It's hard to watch those you love go through it on both ends.

I see good things ahead. I have a lot of high hopes that there is still a great deal of fun to be had and a life that I can enjoy. New precautions need to be taken. Not sure if I will get to go to the Amazon rainforest, or explore mountains in Krgystan because my doc thinks there are evil diseases I can catch in those places. I've already got an evil disease, so what's one more? It would be a shame though to waste all this hard chemo work on a stupid mosquito virus. My plea for Tahitian vacations continues but nobody likes me far away from big hospitals with smart doctors. We will need to be creative. Alaska to Tierra del Fuego will happen though. It's just a matter of timing.....

Until those days, we have work to do. Heads down, sticking to routines, staying healthy are all part of getting through stuff like this. The enormous amount of support coming our way makes doing the work much easier. Every day, I want to work for that happy ending for everyone, especially Marek.

There has been a little scuttlebutt about my upcoming birthday. This year, I turn 50. Five-O. Plans to go big have been tabled, primarily because I don't have the energy to remain standing for more than an hour or so. It's supposed to be a celebration and while it is, I have higher expectations than sitting in a corner watching my friends worry about me. I've worked hard for this birthday, and I fully intend to celebrate it rightly, not curled up wishing everyone would go home early.  Not my style.
So, I will be celebrating my birthday next summer when it's warm and we can fit more people at our house. It'll be the "50.5" and a celebration of epic proportions. When my actual my birthday comes, I will light a little candle and enjoy some espresso creme brûlée to honor the achievement. It will not go unnoticed. I am surrounded by the love of my girls and my husband, which is the greatest gift ever; to spend another birthday with them. I am so grateful to all of my friends who have earned this birthday celebration almost more than I have with bringing food, contacting me daily and sending good wishes. They have given from their hearts through this and we all deserve a little good news and some killer birthday treats. So save June for the 50.5. Maybe I'll grow a few hairs for the occasion and cannonballs in the pool will be a much higher possibility.

and thank you for reading.

A New Paradigm

I wish I had perfect news. I wish I could give everyone, working hard for us, the kind of news that everyone deserves. I want everyone to have a happy ending. Right before Christmas, that would be more than convenient. I had really high hopes for a miracle. I knew it would require one. Stage IV Breast Cancer is a chronic disease that doesn't just "go away." Given the fact I am stubborn, can take a pretty good hit, and don't take no for an answer, why would I expect my own cells to be any different?

There is good news to report. I am responding very well to chemo and radiation treatment. The radiation I received in September is still hatving an effect. Most of the lesions in my brain are gone and the ones that remain are much smaller, reduced by half as a matter of fact. My physician explains that sometimes the cancer cells just die and leave behind a non-active mass that remains. Normal organic tissue behaves similarly by leaving a scar. Cancer cells die a little differently because by their own definition, the genetic component that mutates is dysfunctional. They literally refuse to die and grow exponentially into tumors and masses in inconvenient places. So when we actually kill them, It makes sense that instead of disappearing, they just shrivel up and die.  They're just bitter, because they lost, but I get to keep a portion of them as a souvenir.

The lymphadenopathy in my abdomen is gone. The areas surrounding my aorta and my kidneys are clear. There are still some nodes that are active but the overall picture is good. The disease is responding and will continue to respond as I move through the phases of treatment.

So why am I not jumping for joy and posting selfies on Facebook?

It's Cancer still there. I still have this. Portions of my chest have active lymph nodes and my lungs are "fuzzy," which remain unchanged since my last scan. My Doc's not even convinced that what's going on in my lungs is actually cancer but thankfully, does not want to biopsy every little thing he finds in my body (because that might actually kill me). The presumption is that it is a collateral relation to cancer and is being treated that way. It's not worsening but it's also not changing. It might just be something I have to live with. My doctor is optimistic. He's happy with the results. He's so happy that he decided to add three more cycles of chemo.

Three. More. Cycles.

That's 9 more weeks of hell.
"But you're tolerating it so well," He adds.
Technically, this is correct. I am far more capable than most of his other patients who can't keep weight on,  who suffer from severe neuropathy, who can't eat, can't drink, can barely function. Yes, I am tolerating "well," but my standards are far higher. I am spoiled. I want to THRIVE. I want to relieve Marek of all the extra work he's having to do for us. I want the girls to have an actual mother with some credibility and doesn't forget what she told them 5 minutes prior. I don't want to lay in bed in misery every Thursday. However, he is right. I am tolerating "well," which means I have not reached rock bottom. I am still not at the point of rescue. I can still take more poison that will eradicate what currently remains.

And this is also the new paradigm. There is no cure, only treatment, which means that it will never go away. It will never truly be gone. It will always be hiding. I learned that from my friend Spencer who fought Multiple Myeloma for 8+ years. He was always in and out of chemo, in and out of thriving and dying. I know this is probably my reality now and I haven't figured out how to live my life accordingly. We've been in crisis mode since diagnosis and I've had my nose to the grindstone since.

Three. More. Cycles

Marek and I have been trying to plan a "post-chemo" vacation. We both need a break from all this chemo fun, and anticipated we would be done a little sooner. As you know, we roll a little differently. Generally, we go to remote locations and we go for extended periods in third world communities. Now, we have guidelines. My doctor was mortified when I told him we wanted to travel around the Philippines or the South Pacific.
"There's no Tertiary Care Centers there! Things happen. What if you have an emergency?"
I don't think he travels much, which is why he is my oncologist and not my travel agent. But he does know that the likelihood of pneumonia, or blood dyscrasia, or infection of any kind will level me.   Just for giggles, I asked him what could possibly happen. He listed things like Renal Failure, sepsis, Gall Bladder problems, Cancer.... Doomsday. What does he know? I choose denial. I have Cancer. None of that other stuff applies. (Which is total BS. It applies even more. Denial)

Three. More. Cycles. 9. More. Weeks.

I am psychologically wrecked right now. However, I also know that my doctor is right. 3 more cycles will not only increase the efficacy but will also increase my life on this planet. 3 more cycles means Christmas on chemo and an endpoint of February 21st. 3 more cycles means 2 ½ more months of side effects. It also means life... after 3 more cycles. My fear is I will be coaxed into 3 more cycles forever and die bald, sick, grumpy, and unpleasant. Living life far outweighs anybody else's version of survival. I'm not going to win any medals simply surviving. Quality of living and surviving must be mutually aligned. 3 more cycles it is because my doc gets it. He knows I refuse to fade away. I think he knows my limits and since I'm "tolerating well," he's going to push me.

My scans are good. I am beating it back. Slowly.  I just have to get through 3 more cycles. I'm afraid I'm going to need a little help from my friends on this one. Nothing new. Just everything you've been doing. I promise not to quit if you don't. Thank you in advance.

3 months and counting.

I've been neglectful in my updates. (Sorry!) I had big plans to regale you with infusion center stories of women far braver than I, and tales of victory that include crushing cancer and giving us a reason to cheer. Alas, this round has not been very forgiving, but rather a little on the brutal side.

I don't like to write about sad things or dismal circumstances. It's not how I like to roll through this world. I am convinced that there are ironies and sarcasms about cancer that could be entertaining to even the most pessimistic of readers. Gloom and doom is not fun for anybody, least of all me. However, so many folks have reached out to ask, "What's going on?' and poor Marek is inundated with requests for news. I've been waiting for good news to share so we can all feel good as we roll into the holidays. As always, the rollercoaster continues. We are up!!! We are down... We are back up!!! and so on. Here's the latest.

In the beginning of October, I was still sort of reeling from brain radiation therapy. Radiation is insidious. It doesn't feel like much when you are getting it, but it sneaks up on you and continues to assault you long after treatment is done. It's kinda mean. I was dizzy, foggy, tired and it just seemed to worsen. Indefinitely.  At first, I was cavalier. Easy! Look! I can still eat with a fork! As time wore on, it reminded me not to count my chickens before they were hatched. The effects continued to accumulate and I got humble.
After brain radiation therapy, my oncologist had a CT scan of my body done to see if there had been any changes since diagnosis (about a month) and found that the cancer had indeed grown. We hadn't started systemic treatment so it was to be expected, but a little disheartening. Part of this growth was affecting my right kidney which started backing up (hydronephrosis) along with some other concerning changes. Those changes have resolved since I started the chemo and systemic treatment. Kidney enzymes are back to normal and lab results looking solid. (Woohoo! We're up!!!).

However, I was still not feeling well. The tumor in my eye began to die causing increasing blindness and made it difficult to drive.  I had some symptoms that I thought were associated with the kidney thing so in my usual style, I encouraged myself to drink more fluids and suck it up. My inner voice often goes something like this: "Cancer is tough. Chemo is tough. Dying sucks worse, people are counting on you,  so quit complaining and suck this up." As it turns out, the kidney hydronephrosis contributed to a simple urine infection that was affecting my blood pressure. I was unable to eat or drink or function and things started looking a little gloomy on my end. I was going blind. I was losing weight. and I was losing faith. (Down goes the rollercoaster.....)

I just finished two weeks of antibiotics and what a difference that makes. Blood pressure is more stable. Brain swelling has gone down and my vision is improving. I had a follow up appointment with my retinal specialist who was happy to report that the cancer lesion on my retina was gone. GONE. Smoked. Decimated. Non-existent. (HA! Take THAT!). This is great news because it was one of the larger masses found in my brain and if it is gone, then it's highly likely the 100's of little ones are gone too. The eye tumor left a scar so my vision is a little wonky, but corrective glasses look like they will help some of that. Truth is, I was headed this direction anyway thanks to the Earth whizzing around the sun at breakneck speed. My new librarian look will hopefully make me feel smarter and help me avoid more overdue charges.  (And we are back up! woo hoo!)

Many many friends have stepped up to bring food, drive me to chemo and just generally lift my spirits. The random text, the impromptu visit, the Facebook post about their ascent of Chimborazo (!!so cool!!), and the scores of "#LiveLikeTori posts and T-shirt pics that make me laugh and giggle... all remind me of a life I need to return to, and make this journey so much easier. We get countless offers of "whatever you need, just ask!"

We don't ask.

We know this isn't fair, because it robs everyone of that opportunity, but allow me to explain why this is important.  We are holding our own just like every other family trying to make ends meet and empowered by the fact that we can still meet our own needs. This is a good thing we can teach our girls. When the going gets tough, our family comes together to work through it. As a nurse, I have seen stories that are dismal. Families losing their jobs and their insurance due to chronic, long-term illness. I've seen the psychological affects of these hardships and the sad events that follow. The long-term effects are worse. They are cumulative and destructive and will unravel the stoutest of families. I am bracing for tragedy, and at the same time, looking for any positive indication that we will make it through this, unscathed. Our ability to do for ourselves is our best measuring stick and an opportunity to feel like we are not losing the battle.

And it's a balance, because not every day is a victory, and we have to work for the small ones.

Here is the point I would like to make. Treatment is difficult. This mountain can only be climbed by me. There's no other way. However, the countless offers of friendship, of food, of rides, of love and kindness empower me to do this job. I KNOW there is a vast safety net of friends and family holding us up in their hearts and prayers. I KNOW my girls are safe and living seemingly normal lives through spending times with friends, playing soccer, and working on their studies. I KNOW Marek will push himself to work hard and that people are out there ready to catch him when he falls. Because of this, I KNOW I can let go of the reins. I KNOW I can cry, and pound my fists on the table, and scream obscenities to the sky because people are there for my family. I KNOW I can sleep through an afternoon because I need to heal and someone will be there for my husband and my girls. I KNOW I can survive this because so many amazing people are on perpetual stand-by for us. It empowers me to take care of myself. It INSPIRES me to not give up. Just one person makes that difference. One person, everyday... "Hey, I haven't forgotten. and I'm here."

So if we don't ask, it's not because we don't need you. It's not because we don't appreciate you or that we have "plenty of other friends." You are a link in the chain that is holding us up right now. You are increasing my likelihood of survival (by hundreds of odds), which is recently relegated to eating (anything I can keep down), drinking (twice as much as I need due to limited absorption) and sleeping (the only part that doesn't require a monumental effort). These things traditionally don't assign me a sense of "achievement." I mean eating, drinking and sleeping.... Really? But those are today's challenges. If I don't meet them, the finish line looms closer. No one can do it for me, but the fact that so many of you are holding us up, ready to help, gets me through one more day. It keeps me from dark places, and from giving up. It helps me rise above the nature of my circumstances and earn the goodness that literally flows through our front door. Please don't stop "being there." It's working.

And when we need (more) help, and we will. We will call. I promise.

What's ahead? Good question. I will see my rockstar oncologist tomorrow and will drill him for answers of the future. Currently, I am on treatment number 7 of 12. Tomorrow's treatment is a doozy. It's a triple header, and I get it every three weeks. I get three drugs that truly suck the life out of me. Much of doing the work is showing up, taking your poison and then spending a week digging yourself out of the burning ashes cancer and chemo chuck you into (eating, drinking and sleeping). It's like getting knocked out week after week only to get back up and ask for another. It's a bit of a psyche war. Let's not forget the the pre-meds I got before my weekly beatdown.  I get steroids, Benadryl and Pepcid (all IV) prior to treatment to protect me from unfavorable drug interactions. The analogous effect is like sucking down a couple of Red Bull and Vodkas before getting the tar knocked out of you. First rule of fight club: We don't talk about Fight Club.

Thanks to some poor decision-making in my twenties, I am well-trained for this! I've picked myself up off of plenty wax room floors after some well-earned, celebratory debauchery to return to the land of the living. Chemo is just raising the difficulty level. Just for fun, I'll add in some real-life responsibility, kid's soccer games, grocery store trips, and maybe a movie in the midst of the week just because it makes me feel sassy and rebellious. I really believe stubborn and feisty mixed in with some sarcasm wins this race. The 90 year-old crotchety patients always go home from the ER (much to their families dismay). That's why they're 90. I'll settle for 51.

So the update is we are holding strong here at camp Robinson. The next six weeks should get pretty exciting with the holidays ramping up along with chemotherapy symptoms. Sometimes I think Cancer levels up on me on purpose. Okay, I'm tough but seriously?  At least Egg nog has hit the stores. There's gotta be some protein in there, right? I'm not especially excited that I will reach my immunity low point (nadir) right around the time the flu starts making it's rounds. Flu is like bubonic plague to a chemo patient. Feel free to bath in alcohol sanitizer before you visit and don't be put off if I don't lick your face.

I will be locking myself up for the next while to stay out of trouble or specifically the hospital, so get out there and climb a mountain, surf a wave, kayak a river, ski some sick line, fly a plane, jump out of one, (whatevs) and send lots of pics. If I can't live my own life... I'll live yours for awhile, if you don't mind. Thanks for reading.

This Means War

First day of chemo. My day started out great. The pain in my shoulder was minimal, my head was clear and I got to spend the day with my dashingly, handsome husband. I had a big day ahead full of blood draws, appointments, surgery and treatment. It's all good. I was excited to get day one under my belt. My Doc reminded me that the side effects of the chemo might not be as severe because initially (5 years ago), I had another chemo mix that was super toxic and put me in the backseat. This time, I don't have to have those nasty drugs and the side effect profile of the chemo I get now is not so bad. This comes to me as great news. I will still experience debilitating fatigue and hair loss but somehow this seems more tolerable.

So I nailed the blood draw, rocked the doc appointment, and headed to interventional radiology where they would perform surgery to place a port in my chest for infusion. I'm a big fan of these guys because they were able to access my supraclavicular node for biopsy, which was an impossible task (kinda like trying to hit a snow pea in a haystack with a javelin), and they rocked it. Because of interventional radiology, pathology was able to profile my cancer so that the corresponding treatments would be effectively chosen and I wouldn't have to suffer any unnecessary "stabs in the dark."

Nurse Daphne brought me back to the surgical suite, and they set me up for surgery where they place a port with a catheter that goes into my subclavian vein and the port part goes nearby just under my skin. When I get infusions, they access this port with a tiny needle that just pokes my skin. Using veins collapses them, and if chemo leaks, it can grossly destroy an arm in a matter of minutes. Ports are very handy and also prevent infection which is also a concern for cancer patients. The interventional radiologist who performed my procedure was nothing short of awesome. I felt NOTHING. All local anesthetic to numb the area, and I was wide awake. Daphne had pain meds for me, but I really didn't need them. My port was placed perfectly and they even tolerated my incessant chatty, banter. I'm a motor-mouth. Sue me. Daphne hooked me up with some Fentanyl to manage my anticipated pain or to shut me up. Either way, I was feeling pretty groovy the whole time. Port placed. Check.

Marek and I had an awesome San Francisco lunch. I was still significantly stoned from the Fentanyl so he was looking more handsome than usual. We geared up for chemo. I anticipated that I would feel pretty awful, nauseated, and not great. It's tough to walk in to a place where they infuse poison that makes you feel subhuman. Chemo takes you to the edge of the abyss and makes you look into the void. It takes a great deal of courage to pull yourself away from that abyss. Falling into it seems so much easier than rallying every week for yet another hardcore poisoning session. This is where everyone cheering for you pulls you back from that edge. They give you every reason to come back by wearing bracelets, buying T-shirts and flying planes from Alaska. Those are the people that inspire you to earn your life, to not give up, and to reach for humanity. Not only do they give you hope, but they inspire a reason to trudge on, to not give in to the abyss and to believe that blue skies are just ahead.

Infusion didn't go as planned. My nurse, Evelyn, from Ghana, Africa was a gem. She was so good, so professional and so culturally African in the sense that she was warm, and kind with a hearty laugh and a loving demeanor. She is the nurse you want at your bedside when things go south. And things went south.
My shoulder had been bothering me for weeks. It's an old rafting injury unrelated to cancer but because of my cancer, it refused to heal and get better. Cancer delays healing and with brain radiation, my shoulder was stuck in the limbo of inflammation.  I brought a ball to roll along my muscles to help with the discomfort, but as my infusion began, my pain worsened. The Fentanyl from my port placement procedure had worn off and I was starting to feel a great amount of discomfort front and back. Marek tried to massage the stiffness and the tension out of my shoulder to no avail. After my first two infusions, my pain was off the chart. I couldn't stand it. Evelyn tried heat packs, tylenol, anything she could on a standing order, but nothing was helping. As it worsened, I felt myself slipping. How am I going to get through this? No way was I going to wait another week for treatment. I needed to get started now because my CT from yesterday showed that the cancer is growing. I needed to get that chemo on board to start letting cancer know that it is not welcome here. While Marek massaged, Evelyn manned the phone. She got doctor's orders for opiates by mouth and by IV. None of it worked. Fortunately, the chemo was infusing and it would be an hour more to gut through the nerve pain shooting through my shoulder and now down my arm, but I was in distress and coping mechanisms were fading. My doctor showed up. He watched and while Evelyn and Marek tried every other intervention, with no success. I was suffering and it was awful. Finally, My Doc said, "I think you need to go to the ER."
Okay, for all of you non-ER nurses, let me just say that unless I am dying, really dying, there is no way I go to the ER. The ER is for EMERGENCIES. The ER is for people who are in major distress. The ER is NOT  for hangnails and the common cold. Yet everybody seems to think that this is a great idea since insurance companies can't deny you medical treatment of your perceived "emergency." ER's across the country fill up with low acuity patients who have nowhere to get treatment. Doctors send patients to the ER because they need a higher level of care, but patients still end up waiting two, three, even five hours waiting to be seen.  It is a crisis and good hard-working ER personnel are getting hammered by non-emergent, "emergencies." I was in pain, but I had an airway, a stable heart rate and a 2-hour drive home. I thought I could gut it out because at some point, I figured I was going to pass out from the pain anyway. Vital functions were still working. I saw no reason to bring UCSF's ER to a grinding halt.  However, the high-powered opiates that Evelyn had managed to appropriate had no effect.  I was in distress and the look on both my doctor's and my husband's faces told the story. While Evelyn and I tried to think our way out of it, nothing was working. Everyone was out of ideas. I had opiates on board so my solution-seeking processes were clearly impaired. My pain was considered "intractable."Intractable pain gets you an admission and no way did I want to be admitted to the hospital. But intractable pain also makes you crazy, so reluctantly, I agreed to go to the ER.
I anticipated a small level of hell. San Francisco on a Tuesday night. Thankfully, no full moon, but the ER was full. We waited, I cried, silently, because despite my pain, I knew there were far sicker people here than me.  I didn't belong here. I just needed something that the infusion center didn't have access to: a pharmaceutical cornucopia of pain meds and a guy nearby who could intubate me in case they went to far.
Dr. Rose was cute. He was kind, receptive and thorough. He ordered more opioids. I saw no sense in this whatsoever, but figured he knew what he was doing. After three major opiate meds that included Percocet, Norco and Morphine, I was still very awake, still very much in pain and wishing I had not come to the ER. Dr. Rose came back and offered Dilaudid ( another high-powered opiate) at which point, I made a simple suggestion.
"Dr. Rose, my pain is nerve pain, shooting down my arm and paralyzing my shoulder. What do you think about Neurontin?" (Neurontin is often used in nerve-related pain syndromes to halt seizures and treat neuropathies.)
In my experience, holier than thou docs would have scoffed at my suggestion, but not cute Dr. Rose. He considered it. "Let's give it a try."
With Dilaudid ordered as back up, along with an anti-anxiety med that would have snowed me through Sunday, They gave me Neurontin. Within the hour, my pain subsided. It stopped shooting down my arm, my shoulder stopped trying to kill me and my outlook greatly improved. Once my pain was relieved, all those opioids took over and I became a red, hot mess of slurring, drunkenness. My dashingly, handsome husband let out a sigh of relief as I insinuated it was time to make a move.
"Time to take me home honey."
I was so relieved to not be admitted. I was so relieved that my pain had a treatment. I was so relieved to go home and sleep in my own bed. It was an epic ordeal. Poor Marek had to witness my suffering for 9 grueling hours then get in a car and drive my drunken self home at midnight (the easy part). He was unbelievably amazing. While he had previous experience driving me home drunk, slurry, and giggling incessantly, he didn't have experience watching me suffer. This added a whole new level of complexity to this journey because he witnessed my mortality and how fast things go badly. It left a mark, a mark of terror that it is very possible that I might die from something stupid, and he was helpless to stop it. I was so so sorry, to bring this painful reality to our perfect relationship. "In sickness and in health" doesn't exactly prepare you for this.
You never know what crazy, hellish adventure Cancer is going to serve up. I never would have anticipated this little episode that had mostly nothing to do with my cancer other than delaying the healing of a musculoskeletal injury and wreaking havoc on my nervous system. I swear the universe threw that in there to increase the level of challenge and difficulty because I practically sailed through the first round. My doctor saw me in distress. Good, hard-working nurses, busted down to help me. Marek watched. Tough round this early in the game, but we did it. We got through. Good people helped us with our dog and our kids and we all reunited the next day to tell the story. Cancer is an adventure. It's an epic journey of unpredicted events. You can prepare all you want but no matter what, cancer finds a way to challenge you at the most unexpected times. Last night, I fought and won. Cancer 1 Tori 1. Battles are part of the deal. Win some. Lose some. But no matter what the score, I fully intend to win this fight. I have an unwavering, committed army behind me in this. If my own cells wanna try and kill me, they're gonna have to accept that they are mutants and the rest of me is slightly more badass than they are. I came to fight. This is not over, and I am geared up for a long, cold war.

The Gift

These are dark days. The last two weeks have been somewhat challenging in strange ways. Upon completion of brain radiation therapy, my physician  prescribed steroids to help me with symptoms of brain swelling which include nausea, headaches, loss of appetite,  mild combativeness, and debilitating fatigue. Unfortunately, the side effects of the steroids are almost worse. They jack me up, take away the nausea and diminish the headaches and send me into a state of mania. The good news is my house is clean, my kids are in line, and there are plenty of hours in the day. The bad news is, it sucks. After day one, I said, "screw it." I decided to forego the steroid storm. I was immediately engulfed with nausea, headaches, fatigue and a pain in my right shoulder due to a previous kayaking injury that refuses to heal. I'm tired, REALLY tired, and it's tough to overcome the urge to just stay in bed all day. However, to me, that's kinda like quitting, I REFUSE to quit. Sure, there are days when 14 hours of sleep are welcomed and acknowledged, but there are also lots of amazing friends coming to visit, warm sunny days, a very inviting swimming pool, and kids who need to learn stuff.This is probably the worst possible timing to learn how to homeschool your kids, but hey, I never liked starting at the bottom anyway. Radiation therapy has a side effect of short-term memory loss, so I have to step up my game. My girls have been super rockstars, committing to their studies and tolerating their mom who likes to write impossible quizzes. However, the preparation and execution of providing a learning environment, weeding through curriculum, and learning to teach has been a great distraction from feeling crappy. As we trudge our way through pacing curriculum and resisting the urge to bake during  school hours, I can't help but wonder if this a good idea or a bad one. Homeschooling was going to be challenging enough all on it's own, but with a cancer diagnosis, it's a whole new way to level up. For me, It works. I spend the weekends coming up with the plan, spending extra time revising and trying to align one daughter's studies with the other to make it easier to teach. It has turned out to be a great way to feel useful as being a cancer patient can sometimes make you feel like a burden. It also distracts from the nausea, requires little physical effort while fatigue takes its toll, and keeps the grumpiness at bay. But it's not just about me, which is why we have certified teacher to monitor our progress and make sure that all three of us are achieving our goals and working towards a High School Diploma.

The side effects remain but I can handle those. The most irritating thing is my left eye. One of the cancer lesions is located just behind my left retina. It leaks fluid which distorts my vision  tremendously. My right eye does overtime to compensate and the end result is a bad case of vertigo and an inability to find anything, specifically the glasses I need to find stuff. Combined with the short-term memory loss, this has become a serious problem. If I put something down somewhere such as my phone, I spend the good part of the day "looking" (groping) around for my glasses and ultimately my phone which wastes precious time I could be spending doing something far more satisfying. Meh. It is what it is. I just have to work the problem and find a solution such as leashes for both my phone and my glasses. However, despite finding this solution, I am unable to drive to the store to obtain said items because, well, I'm blind. Ish. Radiation therapy should have killed that stupid lesion in my eye, but it is taking it's own sweet time. As I journey into Phase II of treatment, I am REALLY looking forward to literally watching this lesion shrivel up and die. Until then, I have littered my house, my purse and my nightstand with high-powered reading glasses.

Despite having the proverbial equivalent of sticking my head in a microwave, I remain capable. I'm kinda psyched about that. I can still form a complete sentence and fire off a witty one-liner or two. Sometimes I get a blank stare but I chalk that up to evolutionary superiority rather than brain mets. Some people just don't get me. That's okay. They usually try not to say much because I have brain mets and it is presumed that I will die soon anyway, so nobody gets in my grill. It's sort of a cancer perk, and sometimes I use it to amuse myself .

Today is exciting because it signifies the next phase. It also scares the hell out of me. Chemo is no picnic. I've been there, done that, got the T-shirt and I know almost EXACTLY how much it's going to suck. That said, nobody likes a negative Nancy so I gotta figure out a way to make this fun. THIS is the true challenge of chemotherapy, and this is the reality of the rest of my life. I have come to learn there is a gift in every adverse circumstance.   For real. To survive such adversity, one MUST look for the gift. It is unimportant that you find it. It's the looking for it that changes the game. Originally, chemo was not part of the plan. Chemo does not cross the blood brain barrier so it wasn't expected that chemo would be part of the plan. However, because the metastasis has spread throughout my chest, pelvis and abdomen, chemo is now.... the plan. Cancer 1 Tori 0. Despite this, I happen to know that chemo will obliterate the nodes positive in my body. As a bonus, cancer tends to disrupt the blood brain barrier on its own so SOME of that nasty stuff might leak in to those brain lesions and put the last nail in their certain coffin. The other meds I'll be getting are specific to my HER-2 positive cancer and a death sentence to any cancer remaining. This is the gift in all of this. The disintegration of my cancer resulting from said chemo and said adjuvant treatments means all of these annoying symptoms get better. My eye goes back to being my eye, the nausea resolves, the headaches diminish and  I return to a new normal baseline. Utopia.

As a nurse, I know that Utopia is temporary and not always how all of this goes down. There are glitches, uncertainties and just plain bad luck. It is possible that I won't respond and if I do, it is also possible I will stop responding at some point. My Oncologist has a litany of "back up" plans. He is preparing for Phase III before Phase II even starts. He is miles ahead on what could happen and he is not to proud to collaborate with sources such as M.D. Anderson Cancer center (Texas) and Memorial Sloan Kettering Cancer Center (New York). He is my ace in the hole and my life is in his hands. He works hard for me, which translates to helping my husband and kids and anyone else that might care for me, so it's my job to make is his job as easy as possible.

Today, I have a very big day. Blood draw at 8am, Doc visit at 9:15am, surgery for access Port placement at 10:30, then chemo and adjuvant treatment at 2:30 which lasts 5 hours. It's a doozy, and it weighs heavy on my mind. Where is that damn gift? Why is it so hard to find? Often, it's a matter of breaking the problem up into smaller parts. I just breathe and take it as it comes. Much like war, fighting cancer has no certainties, no predictability. It fights back in ways unanticipated. I am desperately trying to outwit my opponent but it does not make it easy, and because cancer is composed of my own broken cells, I am proud to say that it fights like a beast. I am my own worst enemy. But I fight like a beast too, and I have goals. The plan for now is to do chemo and adjuvant therapy. I will receive 5 hour infusions every week in San Francisco indefinitely until I beat the beast back. Looking forward to THAT news with great anticipation. If anyone out there knows how I can get my own parking spot near 1600 Divisadero, that would be a tremendous  gift. Parking is a bear.

Until then, I have enough to keep me busy, and ultimately my husband running. With a new Stage IV diagnosis, I am pulling out my Cancer Card and going shopping so if any of you want to offer up something amazing, I am in. You won't believe what a bald head can do in a pinch. Nobody likes to say no to a cancer patient. And if they do? Well, they have bigger problems than me, and probably deserve them because they are just plain mean. They don't see the gift. Ever. That's very sad but also much bigger than me and I've got my own fish to fry.

Right now, I feel very small. The mountain I have to scale seems enormous. Fortunately, I've climbed mountains before and I have stood on top. The journey of a thousand miles begins with one small step so that is where I must start, at the bottom, with one small step and bunch of really great people cheering for me. I will not quit which will be very exasperating to many because I will keep bushwhacking, throwing rocks, shoveling snow, and taking yet another step. I will NOT be stopped.

Thanks for reading. As you can see, writing about my journey is a pressure valve release. It's stream of consciousness, poorly organized, and often just too much, but it releases some of the negative energy and is a gentle reminder of where I've been and where I'm going (I read them weeks later). More stories to come.

"Hangin' on the promises of the songs of yesterday. I've made up my mind. I ain't wasting' no more time. Here I go again...."  Whitesnake c. 1980

Meltdown

The interesting thing about radiation therapy is the effects are latent. You don't see the maximum effect until after the treatment is complete. Effects continue to evolve 2-3 weeks after treatment is done so even though you can celebrate that treatment is complete, you're not exactly out of the proverbial woods.
Yesterday I experienced the first  real cognitive meltdown associated with the side effects of radiation therapy to my brain. Emotions tend to be difficult to reign in once they are underway, so I try not to  choose a negative one because it can have a significant impact on multiple levels. It's like an avalanche on a steep mountainside, picking up speed, momentum and lethality as it grows into a monster.
Anger is the craziest. I am able to go from 0 to totally pissed off in a matter of seconds, which can lay waste to every positive thing that lay in front of me. I really don't like anger because it's so tough on the people around me and in my case,  12 year-old and 14 year-old daughters, who don't need to see Mom's head spin on a 360 degree axis. Sometimes, in their case, an expression of anger sends the very effective message that a particular behavior is not acceptable as long as that anger is reigned in and controlled effectively. However, my problem is the anger beast just gains momentum and doesn't stop, finding more things to be angry about, and turning a very small irritation into a global  crisis such as the end of the world or complete and total planetary devastation.
So I don't choose anger. I choose passivity. I choose to let anger wash over me. It's not the end of the world I tell myself. I choose not to engage to keep the beast in its cage. I choose to walk away from a battle I will certainly not win.
Then there is sadness, sorrow and despair. I don't like these either because they are consumptive. Once the path of sadness is chosen, it compounds to sorrow, despair, depression, and my least favorite of all, hopelessness.  It's a deep, dark hole that is difficult to escape, and given the level of radiation impairment, I am not too proud to think I can survive it.
So I don't choose sadness either.
I do believe that emotions are a choice. We can choose our emotions based on how we think about things. How we choose to think about something, is how we control how we feel about something. For example, you can choose to think that getting cancer is unlucky or unfair with a resulting feeling of anger or sadness, which you then share with your already angry and sad world, thus perpetuating feelings of anger and sadness and an environment of despair. Most people won't call you on this one, (in the case of cancer) because there aren't many folks who can dispute the fact that cancer sucks.  But you can choose. You can look for the good part of cancer,  the gift, the opportunity, the part that inspires gratitude, hope, and joy, and the part that most people untouched by cancer don't understand. This choice can change the world for the better, and this is the choice I strive to make  (or try to) because I need the world around me to be better to help me fight it.

However,  anger and sadness can suck you in  in a weak moment. Sadly, my efforts failed me yesterday and I chose the dark side.

 I couldn't find anything remotely funny, humorous, positive or good about my situation or what was currently happening. It seemed as if the universe was conspiring against my best efforts to choose only positive emotions by putting every irritatingly, possible example in my way and taunting me to choose a positive response. It felt like a test and I chose to fail it on purpose. I chose to let all those negative thoughts and emotions have their moment. All. At. Once.
.
It began with a tantrum of epic proportions, full of rage, and frustration that would mortify a room full of sociopathic, menopausal women. I chose anger, fury, and outrage on a GLOBAL scale. I screamed to the void about woe is me, and fuck that person that should get it, but doesn't, and why do the people I need the most run the farthest away?  I cursed the person, a full evolutionary step behind me, that had the audacity to misinterpret my best intentions and attack me for making the most of my life. I raged over the selfishness of parents who allow their children to feel unloved, unwanted, and unappreciated, and then expect those same children to magically be pillars of society and to come to their parent's rescue when times get hard. I ranted about the unfairness of poverty, the unrealistic expectations of women to do 10 times the work for half the credit and the stupidity of a nation that would choose the worst of us to lead us, and the unnecessary losses of good people for stupid reasons. I tantrumed, raged, hated, and cursed everything, including darkness, the weather, and cancer.
And not so surprisingly, this led to a cascade of  passionately deep sadness.
Sad for my kids. Sad for my ever supportive husband. Sad for the people who don't get it and never will. Sad that I can't see out of my left eye, that my head hurts, that my balance is off, and that I feel like vomiting all the time. Sad for the fact that I wanted so badly to punch someone and realized that  one explosive burst of energy would cripple me for a full day. Sad to be weak. Sad for myself.  Sad that I allowed myself to rage so irresponsibly. Sad that I lost compassion and understanding. Sad that I failed myself. Sad that I didn't rise above.....

It took about an hour, ending in tears and expletives, some fist pounding, and apologies to the universe. It ended with surrender, albeit gratefully inconsequential, 3 new episodes of Blacklist, and a coerced compassion for the cabbage patch that I will soon abandon out of principle. The effects of intracranial swelling continue to challenge my noble attempts to behave responsibly, and  I am hoping to see an improvement of symptoms over the next couple of weeks. I'm looking forward to hanging with some great, evolutionarily-superior friends who get it, the continued kindness of our amazing community who also get it,  and the hopes that radiation therapy will result in some new, cool, super powers that will allow me to bring good things to all those who are standing by us.

This is the human part of surviving. It's unprecedented fatigue, emotional lability, and unbridled vulnerability. It is the universe reminding me how small and insignificant I am and that doing one's best to rise above and be something better is more than just a noble cause, but rather the key to survival. Its about accepting yourself, right here, right now and being okay with the idea that this may be as good as it gets.  You have to be the goodness you want to see in this world in order to earn your place in it, and you can't let the miscreants yank you off your evolutionary step in the process. For now, I'm being present, hoping for more, accepting less, and trying to behave responsibly. Wish me luck, because tomorrow is another day.

One More

9 treatments down, one left. After a lifetime of sport, running rivers and martial arts, I can do "10" of anything. 10 sit-ups? got it. 10 push-ups? easy. 10 pull-ups? yep. So ten radiation treatments to the brain is a piece of cake right?
I'm not gonna lie. Anytime they bolt your head to a table in a wire mesh mask, and drive a bunch of outer space rays into your head, it's gonna leave a mark. The fatigue and nausea are staggering....Only ten treatments, you only need to complete 10....
I've had plenty of trainers tell me, "Come on [dickless]!!! You can do one more!" I can hear them yelling at me while I try to perform some physically relevant task as my muscles shake, the urge to vomit looms, and the sweat pours from my forehead to make my eyes sting.  As the linear accelerator moves around my head and cranks up the gamma rays, I can smell the radiation and it makes my stomach turn. Hiroshima anyone? Chernobyl? Okay, I'm exaggerating because (unlike Hiroshima and Chernobyl) my radiation is clean and focused, but make no mistake that the intention is to kill brain cells with radiation sickness. MY brains cells albeit cancerous ones.  One more treatment. Just one.
We won't  know if it's working for 3 months. Apparently, cancer lesions don't just shrivel up and die, although I envision this happening for my own personal satisfaction. I almost wish I could hear those little cancer cells screaming, begging for mercy. Funny thing about Cancer is that it's my own cells. My own cells are trying to kill me! Ungrateful bastards. I have treated this body like a virtual temple! Plenty of exercise, organic foods and great living, yet I am betrayed by my own genetics. After a lifetime of pushing myself to be a stronger, better, faster human, I can only speculate that my cells got a little pissed off from having to constantly recover from doing one more rep, one more set, one more anything and they are having their revenge. I drove myself into a constant state of inflammation  where my cells were constantly being asked to recover and create stronger, better, tissues. Now the great irony is I have to do one more radiation treatment because those same cells insist on growing out of control. The very training that got me here, is the very training I will need to survive. What my cells don't understand is that if they keep trying to exact revenge on me, they are going to kill ALL of me, including themselves. That is simply not an option, so we are at war.
I'm not sure why I have to walk this path. I keep searching reasons why. Where did I go wrong? What could I have done better? My husband keeps telling me, "It's not your fault you got Cancer," but I know I had a role and the only way to keep this from happening again is to address the behavior that got me here. I search for clues and answers and now I've got every Tom, Dick and Harry  trying to sell me on some non-FDA approved treatment that they swear is the answer. At this point, I'm tempted to try anything which is a dangerous place to be for a cancer patient, but I stay the course outlined by my very brilliant medical team. So far, the fat-free, sugar-free, gluten-free, paleo, vegan, organic, non-GMO, approach has failed miserably. Brilliant minds the world over are trying to find an answer for which I am grateful beyond words, but time is bearing down on me.  I can probably survive this round in hopes that this puts the nail in cancer's coffin, but if it keeps coming back, there will come a time where dogged stubbornness and unbridled determination are no longer successful. I want to beat this, now. The unfortunate reality is there is no cure for breast cancer. You can only beat it back. Until the brilliant minds of the world find a cure, and friends the world over continue to inspire me to tears, I can rise above. I can do one more treatment, shave my head one more time, and wake up one more day because that's what I do. That is how I cope.  There's nowhere to go but forward, and I can do one more of anything. Just. One. More.

Jimmy Fallon! Where are you?

Weekend update is here! I need Jimmy Fallon to bring some laughter to this mess. So much good and bad news, it's tough to keep up. As I always say, it's all just "news," and the only news worth really glomming on to is the good stuff, so here goes.
My last post indicated that I would be starting treatment on September 15th. Well, the more I thought about it, the more I didn't like >100 lesions reaching puberty in my brain, so I decided to pound the table a bit.
Meet Doctor Goldsmith, the latest sniper on my crackerjack med team. He's Army trained, did his residency at UCSF with my other awesome Rad Onc and comes highly recommended. He's just down the street which makes all of this much easier. He's a super cool guy and operates a ginormous Linear Accelerator that targets the cancer cells in my brain. I like him and I think he's up for the job. So, I took my UCSF scans to his office and made an attempt to make an appointment. Stymied by his admin, I decided to be that nightmare patient that shows up and demands an appointment. Okay, I've worked in healthcare and I understand that everyone's emergency is their own emergency and should be treated as such. However, in the ER, we sort you based on need. If you are having the big one, bleeding to death, or can't breathe (among a few other things), we put you on the top of the list. Well, it's different in clinical medicine. First, they get your referral. Then, they request the scans/bloodwork/doctor's notes so that the physician treating you can "sort" you within his/her practice. Rightly, or wrongly, I felt like a bunch of cancer cells in my brain moved me up the list. Brain Mets people. What if it was your brain?
So, I skipped a couple steps. UCSF overnighted my info to the admin staff  (per my request) so all of that was en route. Then, I showed up. I hand-delivered the scans I knew the doctor would need to make a determination to the admin, and she assured me the doctor would see me Tuesday or Wednesday of the following week (7-8 days away).
Let's do some math. You have >100 lesions in your brain trying to kill you by growing. Let's just say they all grow half as big. Your situation has now worsened 1 ½ times. The key to killing cancer is killing small, weak collections of cells that have no foothold, so if you think I am going to let a few pre-pubescent cancer cells mature in my brain over 7-8 days, forget it.
After the admin described the process of getting an appointment (she didn't know I worked in healthcare obviously), I asked her how many Brain Metastasis patients the office was currently treating. She admitted two. I decided they had room. I let her know that I was recently diagnosed by UCSF with over 100 lesions on my brain and throughout my body, positively confirmed by biopsy as a return of my formerly Stage III, now Stage IV metastatic breast cancer, and that I would like to begin treatment as soon as possible. I was polite. I was direct, but not rude, clearly implying that I was not willing to wait a week. She called the next day. "Doctor would like to see you tomorrow."
Okay, so we've established that Dr. Goldsmith is a can-do guy. He's a go-getter. He's a get 'er done, son kinda doc. The team scheduled my "simulation" (A.K.A. Hannibal Lecter mask-fitting) following my appointment. AND he offered to begin treatment that afternoon. Yes, Yes, and yes please.
We had already done the math, the research, the side effect profile, and consulted three certified radiation oncologists.... Whole Brain Radiation Treatment (WBRT) is the next step for people with my profile. Additionally, I am unable to begin systemic therapy until after my radiation treatment concludes because the radiation effects the drugs I will be treated with. The sooner I get this done, the sooner I can bring on the next cancer-killing machine.
I started radiation treatment that day.
So far, I can still tie my shoes and do higher math. I am told my short-term memory will suffer, but it's already affected, so that's nothing new. The loss of my hair is inevitable which is the saddest part for me. It took me three years to get it this length. I love having hair. I know, it's so superficial and childish, but losing my hair is a rough side effect. I've always had long thick hair. It's one part of me that's unique to me and with two daughters in the house with long gorgeous hair, the contrast is glaring. Scarves are not my thing and baseball caps don't fit without some hair. Beanies are sweet and look good in winter but not when it's 90 degrees outside. This is one of those "suck-it-up" parts of cancer. Want hair? or 5-10 more years? I'll take the years. Some good news is I will only lose the hair  in the field of treatment. Therefore, I get to keep my eyelashes and possibly, my eyebrows. This is kind of a huge win.
UCSF continues to run tests on bloodwork and tissue samples. One of the therapies suggested is a cutting edge gene therapy where they sequence my DNA and the DNA of cancer cells to determine where in the genetic code things are going awry. That's some cool science and where your hard-earned cancer dollars are being spent.  There are a number of hormone adjuvant treatments that can be effective (before chemo) and depending on the tissue profile, I might qualify for ALL of them! Yay! There are also multiple clinical trials and experimental therapies available to Stage IV patients. I leveled up so I get to move up the qualifications list. Radiation treatment will end September 15th. I'll be pretty sick and fairly knackered so don't panic if you don't hear from me. I will try to post updates here but I'm working on expanding my website too for short versions.
The hubs and the girls are doing best as can be expected. Marek is a pillar of greatness, making all of this up as he goes along. He keeps me in check, reminds me when memory fails, and keeps me from overestimating my abilities given my proclivities (a HUGE, thankless  job).
As of right now, textbook prognosis is 3-5 years. If treatments are effective, it can be as long as 15 or 20. So don't write those long, tearful goodbyes just yet. I still have a few bucket list items to knock off, a few loved ones left to hug and a mountain of friends to visit. It's business as usual around here planning the next adventure, cleaning the kitchen and trying to remember where I left my keys. FYI, I will be playing the cancer card this round, so if I show up on your doorstep with two tickets to bungee -jumping in india, you are required to participate.  Just sayin'. So increase that health insurance and get those passports ready! Love to all and thank you for reading.

Weekend Update: The Good, the Bad and the Ugly

"What do you want to do?"

My husband asked me this question this morning. This week we got a lot of news related to my recent scans regarding Breast Cancer surveillance and it's been quite the roller coaster ride. Good news, bad news and finally, ugly news have had quite an impact on the Robinsons, and our circle of amazing friends who have stood by us through impossible challenges and amazing adventures. The decision of what to do comes to me and essentially boils down to this: Do I want to go out in a blaze of glory or fade away into nothing? 

If you know me, you already know the answer. 

However, as the news comes in, there are other considerations, primarily, my kids, my community and my stud husband. Everybody has a different answer. Everybody has a different expectation and the idea of loss does not fall short on anyone. So I'll put it to you: What would you do?

First, you will need some information. Here is the update of last week's news. 

Previously, we know that I had a Pet CT that was positive for either some sort of infection or a cancerous process. What we did not know is if it is a cancerous process, what kind is it? We also knew that my brain MRI came back positive for multiple lesions indicating a potential metastasis of cancer to my brain OR a new primary brain cancer. Before I go on to tell you the awesome findings (which I'm somewhat proud of), let me introduce you to my team. 

Meet Dr. Mark Moasser, graduated from Tufts University School of Medicine and completed his residency at Cornell Medical Center in New York and Memorial Sloan Kettering Cancer Center. He specializes in HER-2 positive breast cancer, conducts research and clinical trials on therapies related to key signaling pathways that drive the development of breast cancer  and that drive drug development.  He is a Professor at the University of California San Francisco, Biomedical Sciences Program. He is also the author of numerous publications, scientific and clinical on Breast Cancer and he works with big hitters like the National Institute of Health, the Susan G. Komen Foundation, California Breast Cancer Foundation, and is on the editorial Board of the Journal of Clinical Oncology. 

He doesn't suck. He calls me on Saturdays too which makes him as human as he is smart. He will be handling all of my body-related therapies that target my recurrence.  

We have added a new rockstar to the team this week. Introducing Dr. Patricia Sneed. Dr. Sneed graduated from Stanford University School of Medicine and completed her residency in radiation oncology at the University of California, San Francisco where she remains a Professor in residence. Her specialty? Breast Cancer metastasis to the brain. She is also the co-director on the panel for Gamma Knife Radiosurgery specializing in that procedure which might just come in handy later. Her publications are widely cited and she continues to do research and report findings in Journals of oncology and radiation oncology. 

She's  a stud.

Both of these physicians are essentially, the good news. 

The bad news is my tissue biopsy confirmed the return of my breast cancer. I have graduated to Stage IV with widespread evidence of the disease throughout my head, chest and abdomen. I am officially a breast cancer "lifer" which means I will be fighting this disease until the inevitable end of my life. 

And now for the ugly. After meeting with Dr.'s Sneed, Lloyd and a perky, Asian Med student named "Namu," I was informed that the brain lesions were far more "numerous" than originally reported. 

I love residents. They hate giving bad news and they're really terrible at it. Either they blurt out hideous news that makes patients crumble, or they pussyfoot around the truth in an effort not to provoke an emotional response. Dr. Lloyd falls into the latter category. He tried to use terms like "numerous" or "multiple" until he finally slipped and said "a lot." We asked the three of them how many lesions we were actually talking about. 5? 7? 10? Dr. Sneed reported, "more like 50." Apparently, they stop counting after a certain point because they can't remember which ones they actually counted but for giggles, I sent her and her resident back to actually count. They lost count at 100... That's kind of a bummer. My brain is riddled with very small lesions and her expertise confirms breast cancer metastasis.

Why is this important? Because denial is a powerful force and I want proof. If it walks like a duck, floats like a duck and quacks like a duck,  I want smart people to confirm that this is, in fact, a duck. 

Because there are so many lesions, I do not qualify for Gamma Knife Radiosurgery, her specialty. Gamma knife is precise and in my case, they can't possibly pinpoint each lesion. Instead, she recommends whole brain radiation. Whole brain radiation means they bolt my head to a table and zap me with all kinds of waves from outer space. This is what sucks being a nurse. You know what they are going to do before they do it. Whole brain radiation carries side effects of certain hair loss and possible short-term memory loss. However, personality usually remains intact (woohoo!)

"If I do nothing?"

"You will be dead in 2-3 months."

Honesty is the best policy.

Okay, so to recap, I've got a headful of budding, baby cancer, a bodyful of slow-growing cancer and a sassy attitude. (That's a bonus)

What would you do? The picture looks dismal, right? 

Well, Dr. M recommends a hormone therapy that, as of April 2016, has had phenomenal results in managing indolent breast cancer recurrence. This means it makes my cancer calm down and stop spreading. Dr. S recommends whole brain radiation and both doctors seem to think I have a positive prognosis of greater than 3 years with a top end of 15-20. The difference depends on whether or not I respond to treatment. 

How do I feel? Well, mostly normal. I can honestly say that the inside picture does not match the outside and other than feeling a little spacey, most of my parts are still in working order. I won't lie. I'm sad. I was really enjoying the Pro Leisure Tour, spending my retirement on plane tickets and trips to Park City, and watching my kids grow into amazing soccer players and teenagers. It's hard to give some of that up. I say live hard and fast, and die beautiful, but it's not about me anymore. It is ALL about the people I love and cherish and even the brilliant doctors working overtime to save my life. If they actually prolong it, maybe they can save someone else. Therefore, my dying would be slightly irresponsible and selfish. 

Self-preservation is a universal behavior with adaptation to the environment enhancing an organism's chance of survival. We strive to survive, but humans also depend on the attitude of hope. None of us are getting out of this life alive so why do we fight and is hope enough? Well,  in an environment of self-preservation, hope and goal achievement there is always the possibility that we as organisms will prevail. I've tried to pinpoint my own reasons for seeing this through and I have recognized two very important aspects of my personality that keep me from giving up. 

1. I'm stubborn. 

2. I hate losing. 

"What do you want to do?" was Marek's original question. As with anything, the answer remains the same. 

I want to win. Treatment begins September 15th. 

Bad News Travels fast.....

And now for the bad news....
Yesterday, I celebrated five years of survival. I was diagnosed exactly five years ago with a 49% chance of surviving 5 years. Determined to meet this milestone, I am elated to say that I am still here, thriving and surviving through the good nature of family and friends who have been with me every step of the way.
Unfortunately, celebration is short-lived and it's back to work. Today, I must break the news to all of these hopeful and wonderful people that while we made it five years, my fight is not over.
There is no cure for breast cancer.
This week, my petscan lit up like a christmas tree with multiple lymph nodes positive for hypermetabolic activity that most likely indicates a return of metastatic cancer. It is throughout my chest, lungs and abdomen with positive nodes in my neck and near my aorta. As if that is not enough to scare the heck out of me, my brain MRI shows roughly 5 lesions indicating metastasis to the brain.
I'm a nurse. Brain mets is never good news and treatment options are scary. "So you're going to aim that big gun at my head and zap my brain with radiation?"
Awesome.
Losing breasts was a "no-brainer" (ha ha, see what I did there?). Aiming toxic gamma rays at my brain is another situation altogether. I kinda like the way I think. I've spent a lifetime gathering knowledge, making mistakes, mapping movements and formulating opinions. I like my brain just the way it is, or "was" before my cells mutated and tried to eat it. My rockstar oncologist is doing the Texas 2-step trying to get me every treatment option possible by running more tests, sending my file to the rockstar radiologists (snipers) and rockstar neurologists (brains) and making me the latest and greatest cancer survivor poster child. I just spent five years convincing him that I'm a worthy cause. Now I'm hoping it's enough. Maybe I should have made latkes.
I'm not afraid. I knew going in that there is no cure to the plague of the 20th century. Being a nurse and seeing good people die and lives change prepared me for the inevitable. That's not to say, I didn't try. We switched to everything organic. I reduced my grains intake. I went vegan, temporarily, because let's face it, quality of life is an issue and when you eliminate the good stuff, life ceases to be worth the fight. I tried Paleo. I quit Coffee, sugar and alcohol. Yes, despite all this bad news, I have not had any drunken benders to make this last five years any easier. Okay, I went back to coffee when a study came out saying it's good for me and I needed a vice that was borderline. I don't drink soda. I don't smoke. I exercise a little or a lot depending on what the "experts" say. I don't wear deodorant and I gave up on beauty products altogether. I spent the last five years revisiting my hometown, reaching out to people I haven't seen in years,  and righting all of my wrongs. I have shared and processed feelings, reminded those I've loved that I still love them, and that their love has allowed me a happy, meaningful life of love and happiness with an amazing man I call husband and the gift of two gorgeous daughters, for which I am eternally grateful. I have sought to understand before being understood and tabled harsh feelings. I spent the last five years living as large and as hard as I possibly could realizing my time on this Earth is finite and when my time is done, no stone will be left unturned.
Despite these changes and efforts, cancer returns..... because there is no cure. You don't beat Cancer. You beat it back. You give it no hope for gaining a foothold and you pray.
Currently, we are waiting to see if I qualify for a special procedure that kills the tumors in my head without killing my personality. If I don't qualify, we go to plan B which has a high likelihood of making my hair fall out. Not fair that I happen to like having hair. Meanwhile, my oncologist wants the "neck people" to stick a very large needle in my tonsils and take a chunk of tissue that tells us whether this is a new cancer or the metastasis of breast cancer. And we are back on the rollercoaster folks. "Good news!" "Bad news!"
Meh.
My husband and my kids are taking this as best as anyone can. My close friends are on board and I hear the fear in their voices. I hate to ask this of my friends, my Facebook peeps, soccer families, high school pals, ski racing sisters, and posses from everywhere, but I need you more than ever.
What can you do?
Live. Live large. Live hard. Share pictures of your adventures, and if you see them, hug my kids. And if you can find a 20 year old Swedish Nanny for my husband, I'm cool with that. Meanwhile, I'll be fighting the good fight.... again, and hoping that one of these darn rockstars finds a cure.
Thanks for reading. Updates to come.

July? Seriously?

There's an interesting phenomenon that occurs in cancer survivorship: Live each day as if it were your last and before you know it, an entire year will zing by and you won't believe how little time you have.
How did it get to be July already? As I continue to plan, execute, and reflect on the Pro Leisure Tour of 2016, I am overwhelmed by how little of 2016 is actually left. My husband tries to do the impossible task of balancing my "carpe diem" lifestyle with Robinson family funding. He has a thankless job, and I have far too much good credit. Too often, I diminish his efforts because for 23 years, he's had his head down, nose to the grindstone, suffering from an overachievement complex that I am certain I fueled at one point or another. Don't get me wrong. I had my own nose to the grindstone for the first fifteen years of our marriage until I got cancer. Now I feel that I have a responsibility to reverse his performance-driven self by turning him back into the dirtbag he once was although he was pretty driven to be the best dirtbag I know. I'm sure that's why I am attracted to him given my own proclivities. Chalk it up to a woman's prerogative. or perhaps a severe case of entitlement that I blame on growing up in a ski town with far too little supervision, but we all need to enjoy life just a little more than going through the motions. I love my husband and my family and I have an overwhelming desire to live the life of a shooting star, blazing across the sky until I burn out. This notion of work hard, save hard, and sacrifice was really just a temporary condition in my mind. At some point, you have to revisit why you do all that working and saving, which in our case, was to enjoy each other and a life of travel, adventure and frequent napping in select hammocks. A large portion of people "save for retirement" which is a bit arrogant in my opinion. There are NO guarantees you will make it to 65 and by then (at least in my case), I won't have a joint in my body that doesn't hurt. I'll be lucky to manage a flight of stairs at that age let alone all the "retirement" plans I have. I've come to realize that today is the best me that I will ever be which means that their is a hierarchy of activities that need to be done before my body gives out.  We've had far too much bad news in this family regarding my health and loss, which makes it hard to keep time in perspective. While I don't anticipate checking out anytime soon, I couldn't live with myself if I didn't take advantage of every opportunity coming our way....(see what I did there? I know, genius right?)

Living this way has created a problem. I don't see the future anymore. I don't plan at all, which is why I'm usually late to every event and the reason I try to cram 15 things into a 10-thing day.  Missed appointments go whizzing by on a daily basis while I frantically text how I'm desperately behind schedule. I haven't figured out if this is due to chemo-brain, mommy angst and constant distraction or simply over scheduling. I've stopped caring about the future because I'm not certain I actually have one, and can't be bothered with uncertainties anymore. It's a bit troublesome at times because everything is last minute and I'm pretty sure that is why it's July already and I'm reeling from my sudden realization of time actually passing. It also causes trouble because most of my friends personalize my poor behavior as a reflection of their priority in my life. That's not it.
I'm just a flake.
As the days go by, my goal is to literally pass out in my pillow every day, exhausted from a day full of anything. I've lost too many friends this year. I can't, in good conscience, give up my fight to live each day as if it were my last because I feel I owe those who are lost to this world a duty to live, REALLY live, an extraordinary life and teach my children to do the same.

And so we go, shooting across the summer sky.

Try it out for yourself: if someone tells you that you only have so much time left,  watch time speed up. Those of you that have kids, consider this: only three weeks left until school starts. Some of you might be rejoicing this because you have teenagers, but some of you may see this as your last summer before they graduate/marry/learn to drive.....  Three weeks left to buy school supplies, new running shoes for P.E., sports uniforms, haircuts, and that last summer camping trip. Just watch. Minutes will seem like seconds.
And so goes the dilemma of cancer survivorship.

Last Man Standing

About 8 years ago, our small community of outdoor enthusiasts was informed that one of our own was diagnosed with a type of blood cancer called "Multiple Myeloma." It is a cancer that involves plasma cells. Wikipedia explains the basics here. At the time, he was a young (40's), cycling, kayaking, father of two. He had completed California's Death Ride (130 miles, 15,000ft of climbing on a bike) and he was our local "go-to"for all things road biking. He grew up sailing and somehow found his way to the river where he became a river guide, kayak maggot and professional dirtbag. That is, until he and his wife of boundless energy had kids, and he had to shed his dirtbag persona in exchange for a regular paycheck. He became our mortgage broker, but first, he was our partner in crime. Our kids are roughly the same age and his invention of "Coloma Coolers" got us through the sleepless nights and potty training craziness.
Our community rallied around him. 300 people signed up to help his family with meals, rides to chemo or radiation, helping with the kids, intermittent fundraising,  or just going over to keep him company. His journey went up and down with two bone marrow transplants and multiple treatment regimens. His family has endured a special brand of hell over the years that no one can readily understand nor all the community support in the world can diminish.
2 years after he was diagnosed, another one of our friends was diagnosed with brain cancer. Glioblastoma. Just when we thought we were winning the fight, the wind was taken completely out of our sails. She was rushed to surgery where they removed almost all of the tumor and we were all optimistic that she just might have dodged a bullet. Our community cocooned her too with meals, and rides, and playdates for her two kids and support for her family. Between the needs of these two special families and a loving, caring and giving community, we all came to appreciate the fragility of our lives and how important each day is. Steph's cancer came back a year later and it was diffuse. There were no more treatment options and she was admitted to hospice care.
We were all reeling from such sad events. Our community was on high alert and everyone was taking stock of their choices, their careers, and their options. Our plates were full with helping our friends and making the most of every moment with our families. Just as Steph's condition worsened, I found a lump in my armpit. It turned out to be Stage III Breast Cancer. I was afraid, sad, worried.... all the things that go with diagnosis but I was also embarrassed. I felt so badly for my community, and how this news would be just one more black cloud in a recent downpour. I didn't want to be the bad news. I didn't want to contribute to the community's pain nor the burdens of my sick friends.
I told five people and swore them to secrecy.
Two months later, my friend Steph passed away. I was already bald and in the throes of chemotherapy, and her passing was one of the saddest days I have yet to report. Our other friend was holding strong after his first bone marrow transplant and enjoying time with his family and once again, our community was rallying around another family in crisis... mine. The kindness was endless and I remain grateful for the gifts of the weary that rallied to my cause having rallied and lost, and still feeling the sting of that very intense sadness.
Thankfully, I have pulled out of my illness successfully. This year, I will celebrate five years of remission. However, I am always looking over my shoulder and I am conscious of every move I make, not just for my sake, but for the sake of my kids, my husband and an entire community of people who never turn their backs on adversity.
This week, my friend with multiple myeloma announced he was admitting himself to hospice. The chemo treatments have stopped working, his immune system is no longer fighting and his body is saying enough is enough. This, just a mere week after attending a music festival with his family.
How quickly life changes.
I am devastated by his news. My heart is heavy as I can speculate better than most what his wife and kids are going through. Our community has enjoyed his presence and his contributions for the last 8 years, and we were all starting to get comfortable with the idea that everything was going to be okay, that maybe we could stop being on high alert, stop worrying about life-deafening choices, and stop wondering if this would be the last time we saw so-and-so. I became comfortable with his "new normal," grateful for a reprieve for his family, and happy that even though he had lost his athletic persona, he was still the same guy on the inside with a big heart and a great sense of humor. Admittedly, I let my guard down. Just for a second.....
My journey is just a parallel to the tragedy unfolding at my friend's house right now. I have no voice to scream about how unfair it is, how much my heart hurts and how unbelievably scared I am because none of my drama compares to what's going on just half a mile from my house. Knowing my own issues, I asked my youngest daughter how she was doing with the news and through gentle tears rolling down her face, she whispered softly, "I'm afraid you're next."
I couldn't lie to her. I am afraid too. My cancer is in remission but recently, I've been very sick and my symptoms still linger. It's not cancer but it elevates our fear, combined with losing a friend, watching a family endure an awful time, and wondering if this is the beginning of my end. I worry for my community of friends. This is a devastating blow, unexpected, and undeserved.
If my friend truly moves on to the next dimension, I will be the last man standing of our group of 3. I am unmercifully humbled by this, and their fates are raw and in my face that I'm not getting out of this life alive. I can only hope that we can recover and have some joy in the times in between. I pray that that time is long enough to soften the burden of loss and intensify the memories of two amazing friends at their very best, on the river, and with their families.
I am not worthy of the extra time, unlike my friends, but I am grateful. I will do my best to earn the gift of a few more minutes with my amazing tribe of river people and hopefully, remain positive about all of the gifts coming my way rather than allowing myself to be consumed with "being next." So if you see me, don't let me take one second for granted. I'm counting on you.

SOB

If there is anything we take for granted, it is the satisfaction of a deep, cleansing breath. Take one now. Fill your chest with clean, crisp air, and as it exits, let it leave you completely, and feel relaxation overcome you. Forget everything but this one cleansing breath and let it wash over you, just for a moment.
Now imagine if this breath was stifled, or hindered. Imagine what it feels like to try to breathe in a room of smoke or through something over your face like a scarf, or a pillow. It produces a feeling of urgency, an urgency to get out of the smoke, or to remove the suffocating stimulus from your face. Anyone who suffers from lung disease or breathing issues probably knows what this urgency feels like. They experience incredible and unforgivable fatigue. Breathing is the only activity the body saves energy for,  and all systems are shut down in order to secure just one deep, satisfying breath.
I've been sick for six weeks now. The pain is gone but the cough and the shortness of breath (SOB) remains. It's not infectious. It's not cancerous, and it's completely anomalous.
I try not to think about it. However, interestingly enough, the average human respires roughly 10 to 12 times per minute, reminding me every 5-6 seconds that I have a breathing issue. If I try to breathe to the depths of my lung fields, I am burdened with a nasty, unproductive, hack that makes me sound like I've been smoking for 40 of my 49 years. It reminds me of an anti-smoking commercial where the big, bad wolf huffs and puffs to blow down the little pig's house but everytime, he takes a deep breath, he exhales a deep, hacking cough with nary enough power to blow out a candle, let alone topple a house.  I have never smoked, so it seems a little unfair. Maybe I should have and I wouldn't be in this mess, but something tells me that smoking may have made this problem worse. I'm sort of considering taking up smoking at this point. If humid, tropical, Tahitian air is not making any headway toward getting better, maybe I'd make better headway with some toxic vapor. Maybe I need to toughen up those delicate, healthy tissues.  Unfortunately, I'm all talk, no action. Everything has a side effect or a price, and with everything I have going towards breathing, I can't afford the cost of an irreversible setback. I'm sticking with evidence-based medicine: healthy diet, lots of fresh water, decreased exertion, increased rest and crisp, clean air.
Why is this significant? Well, if I didn't have a cancer history, I'd pass this off as some unfortunate bug I've caught and can't seem to shake. However, being a cancer survivor means anything that attacks you for more than a week, raises your hackles. Why is my immune system not handling this? Why can't my doc diagnose it? Why are the meds not working? It's tough not to panic especially when you tell the story to friends and family and that  palpable look of fear on their face and the shake in their voice tells you that maybe you should be more concerned. I don't have the breath for panic. I barely have the breath to get up a flight of stairs right now, and I don't have that deep, cleansing breath as a mechanism to bring me peace and a level head. I wish I could focus on anything else, but the shortness of breath is extremely distracting and I have to consciously force myself to breathe deep just to know I still can. This deep breath is accompanied by a short bout of hacking and coughing followed by a recovery period.
I don't think this is a permanent thing but one never knows. My cardio capacity has been affected ever since chemo. I wonder if the chemo has set forth a pleural degradation over time and five years into this mess, the effects are beginning to be felt. To be honest, up to now, my capabilities have been incredible. I have been charging in the gym, on the soccer field, skiing in the mountains, rowing down rivers, surfing waves of the Pacific, chasing my daughters and pushing my limits as always with very little notice of defect or disability. When I think of the physical assaults I've undergone (broken femur/pelvis, hip replacement, stage III breast cancer), I feel a little guilty that my limitations aren't worse. The potential for disability is far higher than the actual status quo.  I guess that's why I try not to complain about this lung thing because really, I'm ahead of the game on all counts. However, after six weeks, I'm starting to dwindle. I also downplay my condition in the company of my husband and kids. They worry so easily and they've already been through so much. Everybody is scared and teetering on the possibility of tragedy. It's the reality of survivorship and everyone I care about looks to me for clues of how to react. Because of this, I don't react at all. I just take a deep breath and......

Lung Stuff

On February 17th this year, I went to the emergency room. If you know me, I don't go to the ER. Having worked there for twelve years, I've seen far too many people use the ER for primary care taking resources away from people experiencing true emergencies like heart attacks and trauma. I understand that an emergency is how the individual perceives their situation and that an emergency to me is not necessarily an emergency to others. That said, I'm either bleeding to death or dying before I consent to the ER and even then, I drive myself. Ambulance? Over my dead or unconscious body. 
In this case, I couldn't breathe. My chest had clamped down in stabbing excruciating pain and breathing was getting more and more difficult. I tried Advil. Yeah, didn't help. When I arrived at the ER, many of the folks I used to work with took one look at me and brought me straight back. My numbers were good and I was a little embarrassed that I didn't have a documentable problem but that didn't negate the fact that the pain in my chest was significant and I was a poster child for pulmonary embolism. Don't die at home being stubborn and stupid. It's a balance. 
At this point, I'm not thinking embolism or deep vein thrombosis although my medical team started down that road and all the symptoms made sense. Stabbing, pinpoint chest pain, difficulty breathing, history of travel.... It all fits. This buys me a helical chest CT and a chest X-Ray which is really what I was after anyway. Do I have a mass in my lungs? Has my cancer returned? Every medical emergency sends me to this place. Six months of chemo and frying my thorax with gamma radiation doesn't necessarily leave behind a picture of supple, healthy tissue. I'm at risk for all sorts of messed up stuff and at the five year mark, things are just getting interesting. 
Thankfully, my chest X-Ray was clear. This means no pneumonia or infectious type stuff and no obvious mass, and at this point, the drugs are kicking in and life is good because I don't have cancer and I'm finally able to breathe. I got time.
CT showed some funk. Nobody can figure it out, but the good news is no embolism. Yay me. This little work up, while perceptually yielding nothing, means that I'm not going to die of anything spectacular in the next 48 hours, managing pain means I can manage at home and I got time to figure it out. 
So I followed up with a pulmonologist. He's stumped. It's some sort of inflammatory thing because both ibuprofen and prednisone seem to keep it manageable but now I've developed a hacking cough that really sucks. It's deep, it's non-productive which points toward asthma but my inhaler doesn't provide any relief. On top of this, there is a "cloud" on my CT. It looks like a solar flare. It's some sort of infectious something but none of my blood tests point to infection. If it were pneumonia, I'd have a fever, chills, body aches, elevated white cell counts and neutrophils and none of that is showing up. 
We didn't figure it out before our vacation so now I'm just managing symptoms. The cough remains and I've been through three units of "barf in a bottle" as Zoe so eloquently describes it. She's not far off. It tastes terrible and it is a mix of cough medicine, expectorant, and other stuff to keep me from hacking up a lung. I'm hoping it will resolve as I rally my way through a tropical paradise and enjoy the beauty of the South Pacific. Dying here wouldn't be a bad thing.