Five Hundred Twenty Five Thousand Six Hundred Minutes x 2

While editing old posts I decided that I really hated this one. It was super depressing and negative. I'll rework it and put it back.  For now, just enjoy the pictures from that post. 

Sweet and Sour

I recently took up walking.  That sounds stupid.  I guess I originally took up walking around 36 years ago.  To be honest, I was never very good at it.  It’s actually surprising that I have not spent most of my life in traction.  Well, as you know, my long run of good luck ended last spring.  To be fair, I wasn’t walking when I broke my ankle.  I fell going down a fireman’s pole.  As I was being carried out the basement on a stretcher by 6 EMTs one of them mentioned "There's a reason we don't have these in firehouses anymore....People get hurt." Great tip. 

After lots of physical therapy, complaining and hard work, I was again able to walk, with a walker. Later I graduated to a cane. Okay, I just stopped using my walker because I decided I didn't need it anymore and my physical therapist said that I had to at least use a cane. I put pink puffy bubble letters that read PIMP CANE down the front of it. The P kept falling off so instead it read IMP CANE. Then I had to keep explaining the joke to people. If you have to explain it, it's not as funny. A month or two later I was done with the cane. 

At Thanksgiving my sister gave me my birthday present, a fitband.  Happy Birthday, Fatty! Still, not as bad as that time our brother gave her Schindler’s List for Chanukah. That’s clearly a Yom HaShoah gift.

This particular fit band tracks calories, miles and steps.  I believe there is a tiny creature inside who survives only on steps and guilt. Every day it sets a number of steps as a goal for me to reach before bed.  If I don’t reach my goal one day, it lowers the goal for the next day.  Jason thinks that makes it a race to the bottom.  What he doesn’t realize is the power of the last and most compelling function of this brilliant little gadget. This shame shackle has a little red line that shows up when you have been inactive for too long.  Then more and more little red arrows appear until you eventually feel so ashamed that you end up walking in circles in your living room.   It’s like having your mom on your wrist.

Well, it works.  Sorry for being a jerk, Marla. It’s probably the best gift anyone has ever given me. My brother said it’s the gamification of exercise, and I guess that makes sense, even though that’s not a real word.  One day I started walking to make the red arrows go away and now I’ve been doing it almost every day for about five months. I’m like Forrest Gump, but a lot slower and less ambitious. Don’t be that impressed, I’m clocking on average a 20-minute mile.  Now you’re judging me for being slow.  Remember when my foot wasn’t attached to my leg? Just be impressed that I walk, but not too impressed.

When I’m not out wandering Northern Virginia, most of my time is devoted to reentering the workforce.  This is a complicated and time-consuming process when you work in politics, especially if you’ve been on the bench for a while.  However, until Ellen discovers me and hires me as her co-host I’ll have to keep looking. If you know anybody who might need a Becky, let me know.

Unfortunately the last 8 months haven’t been all networking coffees and spandex.  It turns out that cancer is still out there. A lot of people I love are still fighting cancer, including my mother.  I can’t even begin to talk about that here.

You know what’s worse than cancer? Kids with cancer.  Yup. Sorry to move the conversation to Bummer Becky’s Super Sad Party, but we’re going there. 

In 1989, at Jewish summer camp, I first met someone who has been a huge influence in my life ever since. He is one of my oldest, closest and dearest friends, even when we go years without speaking. He and his wife have three kids, the eldest a daughter who is about the age I was when I first met her dad.  

Her name is Maya, she’s 10 years old and she has cancer.  When she was 2 years old she had an unrelated case of kidney cancer.  Besides that, she’s like most little girls.  She loves her family, terrible shows on the Disney Channel, Taylor Swift, her friends and that same Jewish summer camp.  She also likes to make fun of her father, which makes me like her even more.

Maya does have one other thing most kids don’t have: two parents who are rabbis. On top of her friends from school and camp, family friends and friends of her parents, she has two congregations rallying to support her.  Initially she was inundated with gifts, which she says made her happy for a few days.  Soon she realized she wanted the resources to go elsewhere. 

This very thoughtful girl asked her supporters to donate to her virtual lemonade stand through Alex’s Lemonade Stand Foundation, a charity focused on fighting childhood cancer.  It makes her happy to see all of the donations people have made in her honor. I’m not sure how noble I was at 10 years old, but it was definitely way less noble than that. 

I always thought it was strange when I was sick that people would call me brave or courageous.  It’s not like someone said “Either you agree to have cancer or we kill these kittens.”  I had a disease and I didn’t want to die, so I did what my doctors said.  When things got hard or the pain became too much, I cried, complained, hid in my bed and considered giving up, acting anything but brave.  

A child who acts with dignity and grace when facing circumstances that make most adults weep, is brave.  A little girl enduring incredibly painful treatment who still finds humor and compassion and generosity is courageous and strong and all of the things we should all aspire to be as adults.

Maya is my new role model.  When people tell me that I’m not ready to go back to work, that I should take more time, I’ll think of Maya, going about her life while going through chemotherapy.  When people tell me that I shouldn’t push myself too hard,  I’ll think of Maya and put on my unbelievably embarrassing spandex and head out.

Many of you may know that I have spent most of my life avoiding unnecessary walking wherever possible.  I’ve often said I would only run if I was being chased.  That’s why we picked the Lorton Prison Dash as our first race.  Sunday, April 19, 2015 I will walk in my first 5K with Jason and some very supportive friends.  I want this walk to be about more than me proving I can do it.  That’s why I’m asking people to donate to Maya’s Lemonade Stand in honor of my walk.  Okay, there’s a reason I’m not in fundraising, but here comes my big pitch:

Prophet and human-size Latino roll-on deodorant, Pitbull, tells us that “Everybody’s going through something… but every day above ground is a great day, remember that.”  Pitbull is an idiot.  I do not think that any day above ground is a GREAT day.  Maybe it’s a good day. It’s definitely a day. 

However, any day you can put a smile on the face of a sick child who is selfless and kind is a great day.  

Want a great day? Make a donation.

As of posting this we are about halfway to our goal of $1000.  Please consider making a donation at

https://www.crowdrise.com/walkformayaslemonadestand/fundraiser/beckydansky

UPDATE 

By the time we crossed the finish line we had reached our goal!  We will continue to accept donations as long as you are willing to give.  Thanks again for all of the support and generosity!

Doctor Dunno

Before my ankle bones selfishly decided they needed some time apart from my leg bones, we were talking about doctors and the crazy things they do.   (See “Don’t Call It A Comeback). Let’s continue.

3.  Sometimes doctors just don’t know, and they actually admit it.

This was perhaps the most shocking revelation I had during my cancer treatment.   There have been plenty of times in my life when doctors have been wrong. There have also been times when a doctor has referred me to a specialist because he was not sure.  But what happens when the specialist doesn’t have an answer? It was not until my adventures with cancer that I heard a doctor actually say “I dunno.” And it didn’t just happen the once. 

A Trip Down Memory Pain

Let me take you back to last summer.  As you may recall, I had the pleasure of undergoing a double mastectomy.  Don’t believe what you hear, it’s actually quite unpleasant.  During that procedure they placed tissue expanders where I used to keep my breasts.  Following the surgery my plastic surgeon would periodically give me a fill, which is to inject the expanders with saline that would then expand the aptly named expander, stretching the skin to prepare it for my forever implants.  It also made my fake boobs look bigger.

I never wrote about this next part because…well I don’t know why.  It’s been a weird time for me, so back off.  For about two months after the initial surgery everything seemed fine.  Then it wasn’t.  A lot of women experience some form of infection following their surgery.  Most women do not go two months before presenting signs of infection.  I knew something was wrong so we set off to see Dr. B. 

I could write several posts about my plastic surgeon Dr. B (not to be confused with the fertility specialist Dr. B or my gynecologist, Dr. B).  I could tell you that in the beginning, like a true youngest child, I worked very hard to make this stoic medical professional crack a smile.  I could tell you that despite the fact that they are occasionally painful and it’s a long drive, I actually look forward to our visits.  I could also tell you that Jason and I have developed both tremendous affection and trust for Dr. B, but that would be awkward.  I’m still in his care and some folks in his office read this blog, so I’m just going to play it cool or else it might make our next visit awkward. 

As I was saying, I knew something was wrong, so we went to see Dr. B.  He agreed with my amateur diagnostic skills and sent us to the hospital.  I was a bit hungry and Jason needed some potting soil, so on our way to the emergency room we stopped at the awesome gardening place and the bagel shop.  The good one, with the amazing rugelach.   Don’t tell Dr. B. 

Putting the Hospitality in Hospital

I don’t remember exactly what happened after that since my memories of all of my emergency room visits have started to blend together.  I assume I checked in, answered a bunch of questions and got hooked up to an IV or something.  I do remember one part of the registration interview that I found amusing. We discussed my double mastectomy, which probably should have appeared in the file she was looking at on her monitor, considering it had taken place just a few floors above where we were sitting.  The she asked what I hope is not a standard intake question

Is there any discharge coming from your nipples?

First of all, that’s disgusting. 

Ew. 

No. 

And thank God.  

More importantly, I don’t have any nipples. Remember that double mastectomy we were discussing three minutes ago?

I do believe I actually lifted my shirt to demonstrate the point, which she asked me not to do again because her office had a lot of windows and no blinds.

What started as a casual stop by the hospital ended up being a week at the Sibley Memorial Hospital Resort and Spa.  Worst vacation ever.

Every night Jason would make the very long drive from his office in Virginia to the hospital and we’d order room service. Sibley is the rich people hospital in the DC area, so the food was actually pretty good. Then we’d go for a walk outside, around one of the gardens.  One time we saw a giant dead koi fish in a pond.  I’m sure if my prognosis was worse I would have found that very depressing.  Then we’d go back to my room and watch TV or do lottery scratchers till it was time for Jason to go.  I wasn’t in any discomfort, I just had a thing that didn’t look right, which made it all the more frustrating that they were keeping there just to give me antibiotics intravenously.

This was the week I met my first infectious disease doctor.  She would pop by occasionally and tell me that I had an infection and it was definitely my plastic surgeon’s fault.  He must have given me something during one of my fills. My plastic surgeon, on the other hand, insisted there was no explanation for what was happening.  He had never before seen a patient develop an infection two months after surgery.  I appreciated his honesty. (See Don’t Call It a Comeback Rule 1)  I didn’t really care who was right and who didn’t know, I just wanted to go home. 

This is when I became a difficult patient.  I tried to be nice. In fact I was one of the nurses’ favorite patients.  That may have to do with the fact that I was the only person on my floor who could use the bathroom on my own, but I like to think it was my sparkling personality.   I couldn’t sleep so I wandered the floor at night and got to know lots of folks.  I was even allowed to go down a few floors by myself to hit the vending machines on nights when I remembered to ask Jason for change.

What the hell was I talking about? Oh yeah, after a week of pumping me full of antibiotics with no sign of change I became a difficult patient.  I’m not sure that they let me go because of my convincing arguments or if they were tired of my new unpleasant persona.  They agreed so long as I had a PIC line installed so I could continue my treatment at home.  This is basically a travel IV.  I could go home and Jason could give me my injections of antibiotics.  As you can imagine, this was terrific fun for both of us. 

Did I mention this was going on while we were doing our fertility treatments?  So almost every day Jason and I were getting up, driving to Georgetown, having my blood drawn followed by a vaginal ultrasound chaser, going home and having Jason inject me with antibiotics twice a day.  Some days he was also injecting me with fertility meds.  I think that part wasn’t so bad because he got to stab me in the stomach, something he probably found quite cathartic at that point. 

I think we lasted less than two weeks with the PIC line before I knew it wasn’t working.  What tipped me off was that one day, when we got home from the fertility clinic, I realized I was absolutely freezing and could not find the strength to get out of the car.  The freezing part was odd because it was in the 90s outside.  We took my temperature and it was 103, a personal record.  So we thought we’d give Dr. B a call. He said he’d meet us at the hospital.  He was pretty sure it was time for some surgery, but it was going to take a while to assemble a team because it was Labor Day. 

If you’ve ever had a really high fever you know that it is incredibly unpleasant.  I was on the verge of delirium and absolutely certain I was about to die.  Now I’ve had a lot of people stab me with needles so I’d gotten pretty good at taking it at this point and was not expecting any surprises. 

This woman took a look at me, writhing in pain, dripping with sweat, holding hands with my boyfriend who is trying to offer me some comfort, and she went for the dullest needle in the box. Maybe she stabbed it into some wood a few times or had used it in a recent darts tournament.  Maybe she even spun around a few times to make herself dizzy.  I’m pretty sure she closed her eyes as she jabbed it into my arm, just for the extra challenge bonus points in the sick sadistic nurses’ contest for worst ER nurse ever.   

Then, she took that needle in my arm which was nowhere near a vein and wiggled it around inside me on the off chance she might strike oil.  And, for some strange reason, I screamed.  I screamed the scream of the righteous.  

GET IT OUT OF ME!!!!!! 

She removed the needle.  I told her I thought it would be best if she were to leave.  She told me she needed to try again and this time she promised “ to really look first.”  In my opinion, if you’re about to stick a sharp, or in this case dull, object into someone’s skin, you should ALWAYS REALLY LOOK.  I again encouraged her to excuse herself from my room.

By then Dr. B had arrived and was questioning why anyone was trying to put an IV in my arm when I already had a PIC line.  A PIC line is an IV.  From behind the curtain I repeatedly heard him saying to nurses “Stop doing that, she has a PIC line! Why are you doing that?”  They explained they were worried that the PIC line was the source of my infection.  He politely pointed out that the location of my infection was probably not the PIC line, but instead the giant red breast giving off lava-like heat. I’m not a doctor, but I don’t think this situation was worthy of Mystery Diagnosis. Perhaps they thought I was just storing the sun in my shirt. 

I suppose Dr. B lost the IV battle because when I woke up from the surgery there was an IV in the back of my hand.  No matter, because I was asleep when they did it and when I woke I felt amazing.  And not just because of the drugs.  Sure, my left breast was completely deflated, but if being lopsided meant no more fever, I was willing to live with it.

In Conclusion

Rather than putting in a new expander, my left breast was left empty to heal.  It looked a bit like a very sad chicken cutlet, but I considered it an improvement over its more recent impersonation of the Red Balloon, from the film The Red Balloon. We stopped the fills on the expander in the right breast because I already looked silly and uneven enough. Since I was not going to have radiation treatment, it was not necessary to stretch the tissue before I began chemotherapy. 

Dr. B gave us his best wishes and said he would see us again when I was reaching the end of my chemo, which would be about three months down the road.  While I would not miss the frequent schlep to his office, I admit I was going to miss the actual visits with both him and his staff, who had become my friends at this point.  I also liked the free chocolate and fancy bottles of water. 

Little did I know that I’d be back in that fancy waiting room sooner than any of us could have expected. Cue dramatic music.  

Now the next part of the story is where we really get into some serious I dunno territory, so stay tuned if that’s why you started reading this one in the first place. Seriously though, is that really why any of you started reading this, because you were desperate to hear a story about a doctor admitting he didn’t know? I really hope not.  If you did, I’m really sorry because I got way off point.  I mean there was some discussion of him not knowing the cause of the infection, but that was a pretty minor part of this post.  Really, I’m truly sorry for the misleading opening and title.  I promise to make it up to you in the next post.  I hope we’re still cool.  I think with time we’ll be able to move past this.  Call me.

A Funny Thing Happened On the Way to Recovery

Okay, not so much funny as painful and tremendously inconvenient.  Cake by my awesome neighbor JM, a delicious way to mock my pain. 

The Fall Without Grace

Shortly after my last post, I felt I was almost, kind of, sort of, officially recovered when my surgeon removed the last of my drains.  It had been almost two months since the surgery and even though the drain numbers weren't where they were supposed to be, we agreed that it was time to give up. I know, you are all shocked that once again, my body was not responding in the way that other patients' bodies typically respond.  After three surgeries together, my doctor and I have finally come to terms with the fact that I “just don’t drain like a normal person”.  His words, not mine. 

The removal of that last drain helped me achieve a sense of psychological healing I had yet to experience in this process.  Sure, I knew I’d be having surgery again in three months, but for the first time I was feeling a sense of normalcy.  No, it was better than normalcy, I was feeling motivated, even ambitious.  I worked on projects around the house, I started wearing makeup and jewelry again, and I took care of administrative issues that had been buried under cancer excuses.  I took down the kid’s art wall and all of the get well cards.  We started to socialize more.  We hosted our first firepit s’mores night of the season.  We had the audacity to enjoy life again.

It was in this spirit that we headed to our friends’ house for a night of grilling.  I even made two pies. Okay, so I bought pre-made crusts and fillings and combined the two, but that’s still more effort than just buying a pie.  We were excited to see the renovations our friends had recently completed on their house, and were looking forward to spending time with their 3 little girls and brand new puppy.  

And then I fell.

I don’t want to go into the details, but just know that I bit it…hard. In fact, I experienced one of my greatest falls of all time, and that’s including the time I fell down the steps of a congressional office building in front of a congressman, in the rain.  Another story for another day.

“Call 911!” It’s surprising how quickly the patient knows the extent of the damage while others hesitate, analyze and discuss the matter.  Maybe it's not that serious, they say.  Well, since I've never seen my ankle, or anyone else's, at that particularly alarming angle, I'm pretty sure that we should “CALL 911!!!!!”  I think swearing was implied. Jason was at my side immediately.  He even had the sense to remove my anklet before my ankle swelled into a cankle. Good tip for those of you planning an ankle injury.

It was an intense pain, unlike anything I have ever experienced.  I know a lot of people, including children, who have broken bones.  Not one of them complained nearly as much as they had the right to complain.  Have you ever been asked to describe how much pain you are experiencing on a scale of 1-10? I have been asked that question a lot in the last year and a half.  I always though it was an arbitrary way of gauging pain; my 10 could be your 7. I was wrong; there is an objective 10 and  now we’re on a first name basis.  For the rest of my life, all pain will be compared to that particular moment. But that’s not why I was crying. Did I mention I was crying? And screaming. 

Anyway, the reason I was crying was because  I realized that one small stupid misstep would set us back for months in so many ways. I wouldn’t be able to help around the house or work on the renovations.  I couldn’t actively seek employment. I wouldn’t be able to make dinner or pack Jason’s lunch.  I wouldn’t be able to get my driver’s license which I had been working toward for weeks.  Instead I would go back to needing help for everything, like rides to doctor’s appointments and running errands.  I’d need Jason to help me go up and down the stairs, to shower, to get dressed... pretty much everything, except for limping to and from the bathroom with the help of my walker.  I’ve got that one mastered, although frankly it's exhausting.

The English Major Patient

 

As you can imagine, I was not the ideal patient.  I don’t even know where I learned some of the swears I hurled at the EMTs who lifted me out of the basement on a stretcher.  

“You are squeezing my f***ing ankle! Why the f*** are you doing that? Why would you f***ing do that to me? What the f*** is wrong with you?” Later when a resident had the gall to set my ankle, I actually just dropped f bombs for about ten minutes straight.  I'm not exaggerating, ask Jason.  It even got a little sing songy at points.

Anyone who tried  to take my wallet out of my back pocket so they could see my ID risked having their hand bit off. As is my nature, I did periodically pause to posit absurd questions.  

“F***! Sh**! Where's Jason? How’s my mascara?  It’s new and they said it was waterproof and smudgeproof."

“Actually, it’s really holding up...I mean, considering.”

“Really? That's great. Thanks. Where was I?  Oh yeah,  MORE PAIN MEDICINE!!!”

At one point a nurse suggested that it might just be dislocated. This led to a discussion of the film Best of the Best and to me doing what I am sure was an excellent Eric Roberts impression "Pop it, POP IT Tommy, Pop it!"

For the next several hours I had countless conversations with doctors, nurses, and technicians.  A little bit of medical talk, a little bit of bullshit, and always a request for more pain medicine. I also kept asking everyone for mints.  My breath was terrible and I felt a little self-conscious.

Eventually, they put me in a splint (picture a cast missing the front section, and completely wrapped in ace bandages). The x-ray report came back; I had broken 3 bones in my ankle and had 3 additional fractures in my foot.  Just to be clear, I broke all the bones you can break in your ankle.  My foot was no longer attached to my leg by bones. Want to make sure that's real clear.  Sort of like that time Harry Potter broke his arm playing quidditch and Kenneth Branaugh screws it up almost as bad as his marriage to the incomparable Emma Thompson. So, I would definitely need surgery, but not that night.  They needed the swelling to go down on the tree trunk that had replaced my ankle before they could operate. Another round of x-rays and drugs and just like that, 7 hours later, we were on our way home. 

If you live on our street and happened to peek out your window at 4:00 AM that Sunday morning, oh what a sight you would have seen.  Jason had to drag me up a small flight of concrete stairs, up a path, another flight of concrete stairs and through the front door.  Inside the house we somehow made it up the steps and into the bedroom.  It was awful, but we were both so tired we persevered and I barely remember how we got it done.

In the following days we adjusted to our new situation.  Jason replaced my nightstand with a small fridge. By keeping it stocked with food and drinks I was able to be a little more independent and slightly less annoying.  So Jason could be downstairs, out in the yard or next door, we started using the walkie talkies we bought for this purpose when I had my first surgery.  I noticed J keeps forgetting to take his with him.  Strange.

Two weeks later I had surgery on my ankle.  This was, without a doubt, the most horrific medical experience I have faced in my entire life.  I'm not talking about the surgery, I was blissfully unconscious for that.  I'm talking about my treatment before surgery. I do not want to discuss it in any detail because it was so upsetting.  I will say this: I do wish all medical professionals would really think about what they are doing.  Your patients are human beings, not items on a to do list you have to complete before heading home.  Perhaps you shouldn't force a patient to go without food or drink for 18 hours, while filling her stomach with pain medicines, and then bombard her with terrible news, for example.  I strongly believe that when you mistreat patients you should be forced to undergo the exact same treatment…twice...and harder.

Things were so bad that Jason had to call for backup. My amazing sister immediately got in her car and drove up from Raleigh that night to meet us after my surgery.  Again we struggled to get me inside the house and up to bed and again I barely remember.  Two days later my sister took me back to North Carolina with her, so I could recuperate at my parents’ house.  They have a guest room and full bath on the first floor, so it would, in theory, be easier for me.  Plus, it would give Jason a break from his role as caregiver. He'd earned two weeks off after being on call for a year and a half.  He spent half of the time I was away with a terrible cold.  The universe better have something really good planned for this man.

Lessons Learned

I learned how to use a wheelchair and I got to spend a lot of time with my parents and my amazing six year-old niece.  She likes pushing me around in the chair, but she can’t actually see where she’s going over my head.  The walls of my parents’ house will never be the same.  After my two weeks at the Dansky Assisted Living Facility, Jason came to retrieve me so  I could meet with my doctors and return to my second floor lair.  

The doctors are happy with my progress and switched me from the splint to a boot.  It is what it sounds like, a giant black plastic boot. There’s also a lot of Velcro involved. Super comfortable for sleeping. Duct tape your leg to a small plastic trash bin and you'll see what I mean. I’ll start physical therapy soon and in about three weeks I should be able to start walking, sort of.  I am going to have some gnarly scars, but since I’ve already started a collection, I don’t mind that much.  I’ve gotten better at hopping around.  I even changed the sheets the other day.  It was one of the most physically demanding things I’ve ever done. Today I cleaned the bedroom and I can tell you that one-legged vacuuming is the new hot yoga.

This experience has made me realize something very important.  People with physical disabilities do not complain nearly enough.  This world is incredibly difficult to navigate without the use of a leg. I cannot imagine how anyone spends an entire life facing these obstacles.  I am humbled by people who deal with these issues every day of their lives. 

I think everyone should break a bone or two at some point in their lives.  It would do everyone some good to see the world from the perspective of a person living with a disability. Not on purpose.  Please do not go out and break something of yours or anyone else’s. Just let it happen naturally.  It is an incredible learning experience.

I learned one other thing. Life is way too dangerous.  Lots of people who survive diseases like cancer come out of the experience with a new perspective on life, and I’m no exception.  Life is precious, so put it in a safe place and keep it heavily guarded. Like in a safe room or something.  Some people go bungie jumping or deep sea diving or climb a mountain to show their appreciation for life.  Not me.  I left the house for dinner and now I haven't seen my own kitchen in almost two months because I can't physically get there.  For the rest of my life I will have problems with my ankle, not to mention the handful of hardware currently keeping my foot attached to my leg. It looks like an Ikea bookshelf that has been moved too many times. Screws and nails everywhere. When this is over I don’t want to waste another minute of my life being sick or incapacitated, so I am going to avoid risk at all costs.  Jason has suggested getting me a giant hamster ball or making me a suit out of bubble wrap.  Other suggestions are welcome. They say most accidents occur within 5 miles of the home.  Fine, I’ll stay at a hotel six miles from our house. 

If some day Jason and I get to have something that even remotely resembles a normal life, I may reconsider my position on risk.  I'd love to be that couple that goes camping and hiking, or maybe just the couple that goes for walks on dry days on very flat surfaces wearing shoes with a lot of traction.  For now, I think it's best we play it safe and then maybe, if I'm really lucky, one day I'll get to write a blog about how absolutely nothing has happened lately.

Don't Call it a Comeback

Let’s just consider the last few months a mid-season break.  For the record I think mid-season finales are bull and should be done away with forever.  West Wing, one of the greatest shows of all time, put out 22 amazing one-hour episodes per season without any BS mid season finale, at least during the Sorkin years.  I tried the later stuff, but I had to stop watching after the episode in which Charlie convinced Bartlett to support school vouchers with an inaccurate two-sentence argument. Nice character consistency. Ridiculous.

There are a number of topics I would like to discuss, including why I took that break, but I think I’ll use this post to fill you in on my treatment progress, since that is what this blog was supposed to be for anyway. 

When we last spoke I was coming out of a painful breakup with a particularly unpleasant symptom of my chemotherapy.  Unfortunately, it was a short-lived separation.  It turns out that amateur ninjas were still living in my stomach. 

I’ve learned a few things I did not know about doctors before all of this:

1. When you have a lot of doctors and a mysterious side effect, they tend to blame each other, or you.

My oncologist said the stomach problem was not due to chemotherapy, and if it was related, I probably had a preexisting intestinal issue that was just aggravated by chemo.  She referred me to a very funny gastroenterologist.  I think you’ve got to have a sense of humor if you’re doing that job. 

He explained that my problem was likely caused by my habit of ingesting a bunch of poison every two weeks.  Turns out that’s rough on the tum tum.  Long story short (too late) I had to live with it for the rest of my treatment, plus a few weeks. With dietary changes and medication, it was manageable.  Now I can eat whatever I want and gain plenty of weight.

2. When they don’t do something that you think they should be doing, they make an argument involving quality of life. For example…

By the end of February I was finished with my treatment. So I guess I’m in the clear.  Here is the thing about cancer, you and everyone you know, even people you don’t know, are far more concerned about reoccurrence than your doctor.  Okay, that’s just based on anecdotal evidence, but it’s pretty compelling anecdotal evidence. 

During my exit interview or whatever they call it, I asked when we would be doing the scan. 

“There isn’t one.”

“How do we know if the cancer is gone?”

“You had surgery and they removed the tumor, then you had chemo, so there shouldn’t be anymore  cancer.”

In my opinion there shouldn’t have been any cancer in the first place.  So let’s not work with shouldn’t.

“How do we know if it comes back, won’t there be regular scans?”

“We don’t do those any more…it’s a quality of life issue. You see, we used to have patients checked every three months for the first two years, but we stopped doing that.  The stress from the periodic testing was affecting their quality of life.”

“So how do we know if it comes back?”

“If symptoms return.”

“But I didn’t have any symptoms the first time.”

“Well you know to look out for them now.”

Are you fricking kidding me?

You know what makes me stressed and affects my quality of life? Wondering if cancer is growing inside of me.  Also, I’m pretty sure if I’m noticing symptoms it’s a bit late in the game. 

I got a bit off track on the whole update on the progress of my treatment thing, didn't I?

After chemo we waited for my immune system to heal and then I had another reconstructive surgery.  There were/are a few complications with my healing process, but nothing serious.  My hair is coming in nicely.  If you see me, yes, you are allowed to touch it. If all goes according to plan, I should have my final surgery in about 3-4 months.  We all know how often things go to plan with my family, so I'll keep you posted about surgery. After that all that's left are the tattoos. What? Tattoos? You'll have to tune in to find out.

Join us next post when we’ll discuss item #3, When doctors say “I dunno”

Little Drips of Poison 2

What’s Chematter with You?

Last Friday I had my fourth round of chemo.  Originally, I was supposed to have only six treatments, one every three weeks.  The chemotherapy I first received was called TAC, which stands for some chemicals that start with T, A, and C.  My sister had the same treatment and went to work almost every day, so how bad can it be?

I recently reconnected with an old friend from summer camp who was coming up on her 90th dose over the last four years.  I'm pretty sure she's a superhero. If she wasn't before, she is now, what with all the treatment.  I thought, if Erin can do 90, even a huge wimp like me can handle six.

Several other survivors told me “It won’t be as bad as you’re expecting.” I was also told that day four would be the worst day of the cycle.  The people who told me these things are LIARS! Hey liars, maybe it wasn’t as bad as you were expecting, but it was way worse than what I was expecting. And as for the day four myth? Every day is the worst day.  I spent the first week in terrible pain.  I was convinced that the liars had messed with my expectations or that my sister and friend EG were freakish mutants with magical powers of pain tolerance.

When I finally spoke to my sister about the specific symptoms I was experiencing, she told me to hang up and call my doctor immediately because “that’s not right.” The on-call doctor explained that 1% of people who receive TAC experience a side effect similar to having battery acid poured through your stomach every two hours.  That may not have been how he explained it. 

They put me on a bunch of drugs, which seemed to work.  When I met with a nurse practitioner prior to my next dose, I naively asked if the same thing would happen again, she said—in a particularly snotty tone—“We’ll find out.”  For some reason I accepted that answer.  I figured if it happened again we’d go straight to the drugs and it would clear up right away.

So. Very. Wrong.  I spent another three weeks living the Verve song, The Drugs Don’t Work.  We went in and saw a new, much kinder nurse. She told me that, like 1% of people who try this treatment, I was experiencing a side effect that would feel like swallowing a gallon of pop rocks and soda and broken glass.  Maybe that’s not how she explained it.

A few days later we saw my oncologist.  After a few minutes of discussing my symptoms, she helpfully explained that 1% of people using TAC experience intestinal issues.  Most doctors describe it as a group of blind amateur ninjas practicing with throwing stars inside your belly.  Well, maybe she didn’t say belly.

Ultimately, it was decided that we should change my chemo treatment. Instead of TAC, my next treatment included just A and C. Three weeks out and I am thrilled to announce that the pop rocks, ninjas and other devices of torture have left the building. Of course there are new and exciting symptoms, and I've stopped losing weight but I’ll take it all ten times over what happened the first two rounds.

I’ve decided to come clean with you. The first six weeks hurt like hell. I know, I’ve been playing coy, but I should be honest with you.  Joking aside, it was probably the worst part of cancer so far.  I’ve probably said that about something else, but chemotherapy affects your memory. 

There were many nights when I never slept because the pain was so intense.  I was terrified to eat, which—while helpful with weight loss—was not ideal for my healing process.  There were days when I thought I would give up and take my chances without the treatment, because I could not imagine spending four months living in so much pain.  There were far too many times when Jason had to try and comfort me when there was nothing he could do to ease the pain.

I have tried to focus on the positive throughout this experience, but every month or so, cancer likes to remind me who is boss.   I am looking forward to another week of almost normalcy, with at least a few hours a day of productivity and nothing trying to kill me from my insides.  I am particularly excited to have been able to spend a few days with my sister and her kids.

What’s Next?

The next four cycles will leave behind the A and C and start with a new T chemical.  Not the evil one from before, but a relative.  When I asked my new chemo nurse what to expect, she was constructively honest with me.

“You’re going from two chemicals to one, so it should be easier.  And most people tolerate new T pretty well.  Of course new T is related to old T and….well… you’re special.”

Some days I wish I was a little less special.

I know they’re doing all this to help me, but sometimes it feels a little like torture.  I thought the surgery sucked, but I look back on those days fondly: pain meds, bed rest, presents, people waiting on you hand and foot.

How to Help the Chemo Victim in Your Life

While we may all be cancer survivors, anybody going through it is a chemo victim. My feelings about chemo are probably pretty clear if you read part 1. 

The day of chemo is usually okay, aside from the initial stab and the boredom.  Your chemo victim will likely sleep for the first four days. He or she will not be up for much socializing, unless you’re the kind of friend who can socialize in bed. Fortunately, I have one of those. You know who you are.

Sending food to a chemo victim can be tricky. Ask about preferences.  It is impossible to know what will taste good on what day.  For three days I ate only applesauce, the fourth day I was convinced it went bad and tossed it. I was wrong. You don’t even want to know what went down between grape juice and me. 

Stopping by and bringing room service is hugely appreciated. It is important the victim receive plenty of fluids and protein.  A nice plate of scrambled cheese eggs and toast, or maybe a milkshake, gatorade or a smoothie.  I’ve become a huge fan of pedialyte freezer pops.  Just ask and your victim will tell you what tastes good that day. Beware of false cravings.  A few days in I was convinced I wanted Chinese food for dinner. Jason tried to discourage me. I ate a ton of it and it actually tasted good. Two hours later I was begging for mercy.

Non-food presents are also appreciated to cheer up a chemo victim. Moisturizers, moisturizing gloves and socks, hand sanitizers, head coverings, warm socks and wraps and eye masks are some of the things I’ve enjoyed. Of course rides to the countless doctors appointments or company at chemo are invaluable gifts. Every chemo patient has a different experience. We’re all tired but other than that, the symptoms run the gamut. Just talk to your chemo victim and find out what he or she needs and wants.

This may be the time your friend with cancer needs you most.

In Conclusion

The really, really good news is that we’re almost done.  I’ve got four more treatments and then it’s time for reconstructive surgery.  That's about fifty more days of this torture. That may seem daunting, but looking back on what we’ve already been through, it’s just a drop in the pan.  Okay, a few drips of poison in the pan. See how I brought it back around?

As always, thanks for your love and support.

Little Drips of Poison Part 1

A Fairytale of Torture 

Once upon a time there was a man named Dr. Alfred Von Chemobottom.  His beloved wife developed a strange lump on her elbow.  After removing the offending elbow, Dr. Von Chemobottom was determined to prevent the return of the elbow and the lump. 

At first he tried serving her a steady diet of candies and cakes.  While his wife, Alfreda, enjoyed this regimen, he was uncertain of its effectiveness. She developed lots of lumps and bumps, but they were of a different sort, mostly around the belly. Next he tried exposing her to sunlight as many hours as possible.  Sadly, a new and threatening lump appeared which required removal.  Dr. Von Chemobottom tried everything he could think of to prevent the growth of more lumps. He tried hitting her with pots and pans, painting their house, even ironing her socks.  Still, he felt he had not found the answer.  Then it hit him, like a pot or a pan.

Every two weeks for four months he hooked his beloved up to a machine and sent poison into her body.  It was unpleasant, but not nearly as unpleasant as the effects that came after.  The symptoms included, but were not limited to…memory loss and confusion, stabbing stomach pain and exhaustion, hair loss and acne, nausea and a complete inability to taste food or drinks.  Mrs. Von Chemobottom, now a thin, forgetful, bald woman with terrible skin, begged her husband to stop his treatments.  Reluctantly, he agreed to stop poisoning the woman he loved.  Fortunately, the bizarre and aggressive treatment seemed to work, and the Von Chemobottoms never had to worry about lumps again. Except for the ones Alfred got when Alfreda hit him with pots and pans.

I don’t know. You tell me.  Who realized poisoning cancer patients would make them better?

What’s that? It was the Germans? Huge surprise.  Seriously, the origins of chemo are found in the Germans’ use of chemical warfare during World War I.  I’m starting to wonder if we should reexamine the cookie and cake treatment.  The Germans may just have gone with the poison thing cause it’s more their style.