In Memoriam – Good bye, 2013

At the end of any given calendar year, Western culture likes to take stock of who we lost during the year ending. I thought that I would do my own smaller version of this popular custom.

As some of you know, I follow a handful of cancer blogs (a handful meaning five). In 2013, three of those five bloggers died of their cancers. The following is a brief roll call:

Blog: My Lung Cancer Odyssey - /http://lung-cancer-survivor.blogspot.com/

Blogger: Patrick Leer

Story: 

Originally blogged his experiences as a caregiver of his wife who suffers from M.S. before being diagnosed in December of 2011 with Stage I adenocarcinoma which turned to Stage IV in April of 2013. He died this past November. Patrick reached out to me when he was still Stage I and asked if he could list my blog on his blog. We corresponded every so often via email. He regularly commented to my blog posts with encouraging comments. He taught me how to do the same with others.

Blog: Eyes Peeled Always - http://eyespeeledalways.blogspot.com/

Blogger: Karin Diamond

Story: 

Diagnosed in 2009 with Stage IV Hodgkins Lymphoma at the age of 26. She was an English & Journalism major so her blog is very well written. She has several publications to her credit including being a guest blogger for the Huffington Post. After spending years chasing various treatments, Karin died in September of this year.

Blog: Wisteria Melody - http://wisteriamelody.blogspot.com/

Blogger: Caitlin Meharry

Story: 

I found this blog purely by accident shortly after my diagnosis when I was looking for Christmas cookie recipes and decoration ideas. She was diagnosed with adenocarcinoma of the esophagus in January of 2011. After surgery to remove part of her esophagus & make the remainder functional, she was deemed cancer free. In August 2012, a regular scan revealed metastases to her lungs and lymph nodes. She eschewed more chemotherapy and died in March of this year at the age of 26. Caitlin was a Seventh Day Adventist and lived her faith in inspirational ways. It is her voice that I miss the most.

I face 2014 with no more treatment options available to me. I’ll be looking for trials and will hopefully be matched with one that uses immunology.

Whatever happens, I hope that, as with Patrick, Karin and Caitlin,  I can offer something good to others through my own blogging. God is with us.

Sugar and Vinegar: A Story of Two Sisters

I have one sister. She is a few years older than me and since my birth, we have pretty much been at odds (well, not since the cancer). The main reason, I believe, is that we are very, VERY different people.

Cathy is a tender woman - very nice and kind, sweet-tempered and compassionate. She is a great hostess and will listen with great patience and tolerance to whatever (inane or vapid) thing that people have to say. People love her.

I, on the other hand, often times lack tact. I give my opinion whether it's asked for or not, and can respond in rather brusque ways. I do not have a poker face. If you say something that I think is idiotic or nonsensical, my face will say that to you long before my tactless mouth does. Honestly, I can be a bit off-putting.

Our childhood was full of arguments and fights and me embarrassing her and her annoying me, but secretly, I always envied her. I also always worried about her. Especially as we began to age. The women in our family tend to live well into their nineties. Most men die in their seventies. What would happen to her during those very vulnerable 20+ years after her husband had gone to his reward and she was alone? I didn't worry about myself being alone because I love it. crave alone time. She, however, has always loved being around people.

So even though we weren't on speaking terms at the time,  I built this very elaborate fantasy about how we, after our husbands had croaked in their 70s, would move in to an old house together with a bunch of cats (and one dog, at her insistence). I also recognized that, because of our respective natures, the neighbors would probably love her and find me off-putting (see illustration below).

Unfortunately, cancer has interrupted my fantasy and what I thought would be a sure thing, is now everything but.

As much as I hate to admit it, it has been the cancer that has brought us together, so perhaps the fantasy is now. Happy Birthday, Cathie. With all the love I can send. ~ Ruthigus

The Marks of Cancer

There is a lot of talk among folk with cancer, breast cancer in particular, about living with its scars. Women with breast cancer sometimes have their breasts removed - some of them have reconstruction, the bolder among them do not. A new claim is being made in a recent commercial that women have a special, life-long relationship to their breasts. The implicit message is that having them removed is particularly costly psychologically.

Although I think this notion of having a special relationship to one's body parts is beyond ludicrous, I understand that having a part of you removed or cut into is very difficult to cope with. When this happens, your body becomes something of an object to you. There comes to be an explicit delineation between the physical self and the mind self when one has surgery, or serious a condition/illness, so much so that some people talk about feeling as if their body has betrayed them - like it has a mind of its own and that one day it decided, "Hey! I think I'll grow some deadly cancer cells today! You think Ruth will be upset? Well, f@ck her! Yeah!"

Anyway, after my most recent surgery, I was thinking of all of the scars I have collected in the last three + years. Since no one in their right mind wants to see my scars for real, I have created a cartoon so you can see the marks that cancer has left. Know that before cancer, I had only been in the hospital overnight once for a kidney stone and twice to have my children; hence, the expression on Cartoon Ruth's face:

I do not have a special life-long relationship with my breasts (It would be very one-sided if I did as they don't have much to contribute). What I do have is a life-long desire to have a healthy mind and body. These scars that I carry, just like those who have breast surgery, do remind me of my cancer every day and that's hard. But each scar functions, in a way, like a tattoo (shout out K-A). Like a tattoo, each scar is a memory on the scrapbook of my body. Each reminds me that without it I would probably be dead already. Each reminds me of how much my mind and body can handle while continuing to function well and happily. Each also reminds me of each person who has helped me through these challenges, be it my doctors and nurses, my friends, or my family. What a lovely thought...

                ....I'd rather have the tattoos.

Living in the Land of Cancer Statistics

When you are diagnosed with cancer, you become aware of statistics – painfully. People, even doctors assure you that statistics are just that – statistics, and that they don’t speak to the “individual experience.” Nonetheless, there is still a very explicit desire among those who have cancer to “beat the odds.”

After a recent brain scan, it was suspected that I had Leptomeningeal Carcinamatosis, which is cancer of the covering of the brain and spinal cord. The survival statistics for this cancer are beyond grim – four to six weeks without treatment and two to three months with treatment.

I’m not ashamed to say that I was shaken to my proverbial bones.

Even though it is somewhat rare – 5-10% of NSCLC (Non-Small Cell Lung Cancer) patients get it eventually, I was hoping like a mad woman that I was in the majority statistic this one time, thinking, “Come on, 90%!” And, happily, after having a spinal tap (it’s not just a movie anymore), I found that the results were negative.

Now that that’s over, my onc thinks that I should try to get into a clinical trial where they’re testing a immunology drug. So this Friday, it is back for another VATS surgery to get the hefty tumor sample required for genetic testing. Being part of a study, means dealing with more statistics.

Lung cancer world is full of statistics and, at stage IV, the statistics are pretty freaking bleak. Here are some of the Lung Cancer/NSCLC stats. I’ve placed an ‘X’ next to those where I fall into the minority and “beat the odds” so to speak, and not always in a good way:

1 – In the U.S., 30% of people are diagnosed with some form of cancer.  X (I’m also an oddity because I have no family history, never smoked, and had a very healthy lifestyle.)

2 - In the US, lung cancer comprises 14% of cancer diagnoses but a full 27% of cancer deaths. X (There was a point in the diagnosis period when we were hoping for breast cancer. Can you imagine hoping for breast cancer?)

3 - NSCLC comprises approximately 84% of all lung cancers.

4 - People diagnosed with stage IV lung cancer have a mean (average) survival rate of 10 months. X  (3 years and counting!)

5 - Of the people diagnosed with stage IV lung cancer, 54% will have a treatable genetic mutation that responds to oral therapies (although it does not increase survival times).  X (I have no known mutation, treatable or otherwise.)

6- Of the people diagnosed with stage IV lung cancer, 60% have a cancer that grows because it has turned off their immune system as it relates to lung cancer. (TBD – I’m hoping to follow the crowd on this one.)

7 - Of these 60% who have undergone immunotherapy for the above, 24% have quick, positive, and long-lasting responses (meaning, the immune system starts fighting the cancer and the cancer shrinks).  (TBD)

Crossing my fingers for that 24% of that 60%.

Gotta love statistics!

A Taste of Disability - Spit it out! Spit it OUT!

Since my last post, I have purchased and have been using forearm crutches to get around.

I love them.

I love them because:

1 - They keep me mobile.
2 - By keeping me mobile, they keep me physically active.
3 - There is considerably less pain walking with them.
4 - Because I hurt less I don't have to take strong pain meds that make me woozy and make me vomit, which is a problem when you spend a good portion of your day on public transportation. No one wants to sit next to Sister Pukes-a-lot.

Some people have told me that they find it sad to see me getting around on my crutches. This always puzzles me because if it wasn't for my crutches, I would not be getting around. I'm sure they see it as evidence of increased disability. In actuality, my crutches keep me from being disabled.


So yesterday, I went for my usual MRI. MRI techs get very unnerved about crutches because they're fairly large and made of metal. I've been told that in the MRI room, they would be, "quite the weapon."

So to be safe, those of us on crutches or metal canes, must use a special wheelchair that must be made out of some sort of metal that isn't affected by magnets.

Now, there's something about a wheelchair that changes how people behave toward you. Here's my example: I'm sitting in this wheelchair in the waiting room, watching Wheel of Fortune (because you're not allowed to change the channel of the TV in the waiting room) and the MRI tech walks up to me. She bends slightly at the waist, looks at me with big, puppy-dog eyes, cocks her head and says very loudly and very slowly, "MS  ASH-TON?  HAVE  YOU  BEEN  ABLE  TO  USE  THE  BATH  ROOM,  YET?"

I was taken aback. I looked at her with a look that my husband and children would certainly recognize as my "WTF!" look. To my horror and without knowing it, I had apparently been given a  wheelchair that  not only makes the occupant lose their hearing, but also drops their IQ at least 50 points.

In response, I sat up tall in the squatty chair and assured her that I was fine and ready to be scanned. The, what I considered, baby talk continued until I moved from wheelchair to MRI table without assistance. Only then did she talk to me like I was an adult person. The question is, was it my ability to move without the wheelchair, or that I was out of the wheelchair that made the difference? I'll never know. What is it about age and infirmity that makes other people act like moronic bone heads?

This experience lends a certain dread to any future day that I might be in a wheelchair on a more permanent basis. I imagine that regularly being treated with condescension could be very, very wearing - and turn you into one bad-ass, snarky bitch.

RIP, Patrick

The cancer blogging community lost another member this week.

http://obits.pennlive.com/obituaries/pennlive/obituary.aspx?pid=167994241


Side note: 2013 has sucked the big one in this regard.

Each death is an occasion to mourn the loss of the person and be angry at their cancer.

It is also an occasion to mourn my own loss and be angry at my cancer.

Hate you, Cancer.

RIP, Patrick.

Walking

Most human beings walk (alive or dead if you’re friends with the show The Walking Dead  pictured above) – from about the time we’re a year old until about the time we cash it in. You take it for granted, walking. Being able to get from point A to point B only thinking about having proper directions. I took walking for granted.

Over the last month or so, I have been experiencing increasing amount of pain while walking. Hip pain, leg pain, knee pain, back pain – sometimes one or two areas at a time. Sometimes all at once.

The doctor prescribed drugs which left me loopy and vomiting, so I trashed them. I spent a week on crutches and driving to work, hoping to give things a rest and ultimately hoping that once again I would be able to take walking for granted. And things did get better and I was hopeful.

But as soon as I went from crutches to cane, and from driving to public transit, back the pain came.

Yesterday, I spoke with Dr. J. about the whole thing. She believes that this is / will be a chronic condition for me. What she didn’t say, but what I know, is that I will most likely experience increasing amounts of decrepitude. It’s how bone metastases work.

So, I had an MRI and I’m set up to see Dr. P., my orthopedic oncologist on Monday, and maybe a different Dr. P., a spinal surgeon, too. I’m not sure why. I think Dr. J. wants to see if they have any ideas on how to keep me up and moving, or if maybe back/spinal surgery is in order at this point. I have my doubts. A recent MRI (July) showed nothing much new in that area and certainly nothing warranting surgery.

In order to sell me on back surgery at this point they’re going to have to make a very, very convincing argument. Show me pictures of my spine crumbling or tumors pressing on nerves – something solid. No hemming or hawing about it because I’m okay walking in the fashion of The Walking Dead for while until I experience that increasing amount of decrepitude and really NEED to have surgery.

'The Trouble with Blogging'

Click to see my first comic strip:  new series name: 'The Trouble with Blogging'

Hello. I have cancer.

Hello.

 

My name is Ruth and I have cancer.

 

Thanks to bitstrips.com, Ruth created me and can create more of her own comic characters and comic strips. She will add these to the blog now and again to spice things up and add some 'fun' to this what-has-become-the-blog-of-suffering-and-death.

 

Not that there's anything wrong with a blog-of-suffering-and-death, but if I'm gonna talk about  suffering and death so much, why not inject a little creative fun into it?

 

I do feel slightly guilty giving stage IV lung cancer to an innocent cartoon, though...

 

 

 

 

Just a Touch of Dread

Addendum to this post: I am not talking about stopping chemo altogether, but the most toxic agent. I'm sorry that I worried you people. Although there may come a day when I do talk about it, so be ready.

This past year, a couple of cancer blog authors that I have followed have died, one just a few days ago.  These young women were in their primes (26 & 31 years old) but handled their cancer in very different ways.

One who had adenocarcinoma (my kind of cancer) of the esophagus, underwent surgeries and chemo, but once she had a recurrence, decided to eschew further chemotherapy. She decided to eat healthily and exercise instead knowing that it probably wouldn’t make a difference. She died about six months after her recurrence was discovered and spent the last month of her life on an island in Maine with family and close friends. She died peacefully in a beautiful place. She had survived two years since her initial diagnosis.

The other who had Hodgkin’s Lymphoma, underwent initial chemo and then a marrow transplant. She continued to seek treatment, after treatment, after increasingly toxic treatment. The photos of her on her blog showed a person who looked almost nothing like the person who started the blog. She was bald and swollen; she had bleeding out of her skin and horrible thrush and mouth sores. She spent much of her last months in the hospital. Finally, her body just gave out. Her husband said she died peacefully, but in her last posts she talked about suffering from major pain and panic attacks. She had survived four years since her diagnosis.

Each of these deaths left me a bit stunned, heavy-hearted, deeply sad … and with just a touch of dread. It’s becoming time for me to make some treatment choices and I ask myself, which person would I rather be:  the one who lives four years but suffers horribly and spends much of their time in the care of strangers, or the one who lived only two, but is surrounded by home and family and beauty?

We, the cancer afflicted, are encouraged to fight, fight, fight and that’s all well and good if you have a chance of winning. But I don’t, and if my suffering serves no purpose but to add to medical statistics, then fighting to the end…well…seems kind of stupid to me.

Perhaps I am not as tolerant or tough as I once thought. The truth is, I hate, hate, HATE how I feel on this tough chemo.  It could be vastly worse, I know, but I’m not sure I want to tolerate it anymore. 

One or Two?

The 2nd leg of my first round of new chemo has gone very smoothly. Other than a headache and chilling through the weekend, I really have had no other symptoms. I have energy and although my appetite has not returned completely, it is on its way. I am very thankful for this, but it has me thinking. Do I want to continue my current chemo cocktail?

My new drug regimen for the 1st leg of each round of chemo is Avastin - an anti-angiogenesis targeted therapy, Gemzar - a 2nd round NSCLC chemo agent, and Carboplatin - a platinum-based drug that causes all sorts of, excuse me, shitty, shitty side effects. Lethargy, relentless nausea, vomiting, neuropathy, shortness of breath, heart palpitations, chest pains, and chemo brain, among others. The Gemzar/Carbo combo is popular in Europe and it seems to be used more in the US recently. I had the Carboplatin at the very beginning of my chemo treatment in 2011 and it was difficult. The effects from it this 2nd go around have been worse, so I'm beginning to wonder if the benefits of the Carboplatin are worth the week-long feeling that I could puke up my shoes at any minute.

I looked up some statistics and it seems that, although there is little data regarding Gemzar alone, Gemzar with Carboplatin makes little difference in survival times when compared to other chemo agents. However, it DOES make a difference in how people feel while they are surviving. Because it is so harsh, people feel better without the Carboplatin (surprise, surprise).

So I'm taking this and next week to consider the real possibility that I'm done with the Gemzar/Carbo mix or whether I'm willing to sacrifice one week of every three for an extra 1.6 months.

Sister Cranky Pants: Depression with Cancer

As much as I'd like to deny it, with cancer, comes depression. Some of it from the anger, frustration, fear, etc. that you get from simply having the disease, some of it comes from physiological changes due to chemotherapy, and some from the effects of the chemotherapy.

I have found that I have been able to handle the disease-related depression much more easily than that brought on by the effects of the chemotherapy.

I think that part of the reason for this is because my disease has only been nominally symptomatic in the last three years. I’ve really only had bone trouble. Other than pain from that, it really hasn’t caused me real discomfort. The chemotherapy on the other hand, has been a giant pain in the infused ass.

I feel nauseated. I have a headache. I feel bloated and disgusting. My brain has trouble keeping up with conversation. As a result, I get cranky when I can’t understand what someone is trying to say to me. So I have a group of people, especially KB, who are doing all these things to help me out and I respond with cranky faces and barbed retorts. When I see the looks on their faces,  I end up feeling terribly guilty. I end up feeling like I don’t deserve to be treated well, that I should just be rejected by all of humankind and left alone to wither away, or barf up my guts, whichever comes first. I feel like rolling up into the fetal position and disappearing, and that my disappearing would be the best thing to happen for everyone.

Complete self-pity, I know.

Which makes me loath myself even more.

It’s a horrible circle that I have to talk myself out of. I also know that I have to control my nastiness. Some people have told me that it’s understandable, that I should take it easy on myself, etc. But I have always believed that you can’t use cancer as an excuse to be a douche bag, and I still believe that. I still have self-control and choice and I need to exercise it, despite how I feel.

It's time to give Sister a swift kick in the Cranky Pants.

Second Line Treatment

Last Friday was the first day of my 2^nd line treatment. I was hoping to go into it feeling emotionally strong and physically healthy, but due to some familial stressors and my recent hip surgery, this isn’t the way things went down.

I went into this dragging my emotional feet. I did NOT want to take these heavy-duty drugs again that compromise my mental state and make me feel utterly crappy. Nonetheless, last Friday, I was in the infusion chair, ready to receive the treatment that the doctor believes will give me two to three more years of progression-free existence. When you break out in a rash, have rampant fatigue, and hate the sight, smell and thought of food, thinking, “2-3 years. 2-3 years. 2-3 years,” is not necessarily the motivator you’d think it would be.

I’m several days out from my infusion and I still feel like crap.

I’m guessing that once I’m done with it and (if) I get those 2-3 years, I’ll think it’s worth it. At this moment, I’m not so sure.

**For family & friends who might be worrying. Don't. This is just an expression of my feelings at this precise moment. 

Affirmations Schmaffirmations

 

Today was my last of 10 radiation treatments for cancer that is encroaching on one of my sacral nerves and causing some really lousy sciatica-type pain. Thankfully, it has helped to a degree, although I’m kind of worn out by it.

Anyway, in the inner waiting area at the radiology clinic, there sits a basket that, overseen by a paper smiley face on a stick, is full of small sheets of paper on which are typed a variety of life-affirming notes – what we now call ‘affirmations’.

 

Being a self-avowed cancer curmudgeon, I don’t find affirmations of any kind very helpful. I don’t find them helpful because I don’t find them honest.

Now I understand that affirmations help people.  A lot of people, obviously, or we wouldn’t be using them so much (they even come in our chocolate candies – opened a dove chocolate square lately? Doesn’t velvety chocolate say all it needs to?).  And if they help you, more power to you.

But sometimes, they are out-and-out lies.

 

Really? There is no one and has been no person on this planet to whom only good things have happened. For one thing, random shit happens to people. All people. It just does. Secondly, none of us are always good people. Sometimes, we say mean things, we are impatient with our children, we slap our dogs on their noses, we gossip, we lie, we take the last brownie when we know it’s our spouses favorite, we operate out of self-interest. And some people do much, MUCH worse things. The consequence of doing some of those things is that bad things happen. We’re impatient with our teenager and they yell and slam doors. We eat the last brownie and our spouse makes a snarky comment about the size of our butt. NO ONE deserves only good things in their life. No one.  Because, frankly, we don’t DO only good things in our lives.

 

 The devil is in the details. Not many of us will kill our neighbor’s annoying cat, but many will lie to our neighbors about knowing the location of said cat if it turns up missing. It’s the small stuff that does matter because it’s accumulative. It is the building blocks of our everyday lives, of our everyday selves. We are our actions.

So, maybe instead of believing that we should always feel good and have only good in our lives, we should feel a little badly about the bad stuff that we do and expect the bad stuff that we get in return. If we engaged in a little honest reflection and de-affirmation from time-to-time, perhaps we would become people who don’t need our chocolates to tell us how great we are what we deserve out of life.

Getting "The Face" and the Need for Formal Cancer Etiquette

Since my diagnosis, I have been the recipient of The Face on several occasions.

I have tried to imitate "The Face" here:

In my experience, not much content comes with The Face. Maybe a little, awwww-poor-baby sort of mewlings, but basically, it's just The Face - and what do you do with just a face? Really? So what I end up doing is making a comment like, "What are you gonna do?" or "You gotta do what you gotta do?" Still the face continues to just look at me. I end up just walking away.

I think that this happens because, despite the great numbers of people with cancer today, we as a society, have not kept up with creating standard appropriate and helpful social responses to people who have really scary diseases. As a result, you get things like The Face or (worse) weird, nonsensical, unhelpful, sometimes-insensitive comments / suggestions/ wisdoms. 

Sometimes it's easy to get a little honked off when, after revealing to friends that you have cancer, you receive a response like, "Yeah. My dog died of cancer. Cancer sucks," or "My uncle died of that kind of cancer. He got cancer and was dead in two months." But I think that, at least after a while, most of us realize that these comments (and The Face) come from well-meaning people who are uncomfortable about illness and ignorant about how to respond. Also, there's probably some self-importance in here, but I digress.

The best advice that I can give to someone who is at a loss about how to respond when someone with a cancer diagnosis is keep it simple. Don't offer diet advice or talk about alternative treatments in Mexico. Don't share cancer stories that had bad endings - or happy endings for that matter. Also, don't avoid the subject. Try to imaging how you would want someone to respond to you if you were the one with the diagnosis. Comments like, "I heard about your diagnosis. I was so sorry to hear about it. How are you feeling?" "Please let me know how I can help" (only offer this if you mean it). "I'm thinking/praying about/for you." These are simple and kind statements that focus on the ill person instead of any advice or cleverness, and lets them know simply that you care. In my experience, this goes a long way and gives significant comfort and some relief.

“Or, rather, let us be more simple and less vain.” ― Jean-Jacques Rousseau

Happy Anniversary, Beloved.

Four years ago today, my husband and I were married at the Cook County Courthouse in downtown Chicago.

Both of us had one marriage and several long-term relationships under our belt. Married too young to people with whom we had little in common except for geographical location, our past relationships had operated from a goodly amount of emotion, drama and sometimes violence.

When we met at school in 2004, we were both very tired of that sort of thing and found it refreshing that our attraction was not founded on sex, or scandal or romantic drama, but a pairing of the minds. He’s a philosopher. I’m a sociologist. We had many interesting things to talk about.

Our relationship moved along with little effort. It was easy. We got along. Neither of us had to be more or less that what and who we were. It was so good, in fact, that we used to tease one another that, sooner or later, some bad mojo was going to come and sweep one of us away.

And so it happened.

On October 4, 2010, I called him from my sports doctors office, crying, saying, “They think I have cancer. It’s in my bones.”

It’s the stuff bad Lifetime movies are made of – but this is real.

Since that day, he’s become part of my larger family. Getting to know my parents and siblings, becoming friends with my sister’s husband, my children and their partners, and warming up to the idea of being a grandpa without ever having been a father. He delights in my (our) children’s successes and winces and becomes frustrated at their challenges. He sometimes offers quiet advice and suggestions. He’s sincerely intrigued with the psychology of our developing and growing grandchildren

With this latest cancer recurrence, He knows that he comes one step closer to becoming my caretaker. Although he feels unequipped for such an undertaking, he is ready to do whatever is necessary, including helping me recognize when enough is enough when it comes to treatments.

After my death, he’ll become the one who will see to my honest memorial. It will become his duty to help my children and grandchildren remember who I was, reminding them of what they meant to me, and helping them figure out what I meant to them. He will be around to help make decisions and parse out money for their secondary education that I will leave in trust for them.

Each anniversary reminds us that “Till death do us part” will come far too early for both of us. But until that day, we continue to move along with little effort, allowing each other to be exactly who and what we are, and having many interesting things to talk about.

Convalescence and Escaping Cancer

Lower Harbor, Marquette, MI

I like the word 'convalescence'. Something about it is more warm and comforting than the words, 'recuperation' or 'recovery'. The word 'convalescence' swirls with soft blankets and warm soup and fuzzy slippers.

Originally, I was just going to stay at home after surgery, hang out, watch movies, nothing special. Then The Bickster asked what I thought about going to Marquette while I was 'convalescing'. Knowing that this would not be our usual U.P. trip of tent camping and back-trails hiking, I hesitated. Being surrounded by all of those temptations and not being able to partake might be too frustrating. But after some discussion about having a different kind of vacation - one just enjoying rest and relaxation in a beautiful natural setting, I decided that it sounded like a pretty good idea. I hopped online and booked a room at the Days Inn for seven days and yesterday, we flew the coop.

There is something else to getting away after this surgery other than having a nice place to heal. There is this faint idea that I can escape my cancer, if only for seven days. Seven days of not thinking about the treatments that lie ahead. Seven days of not thinking about possible suffering and premature death. Seven days over which I have a modicum of control. Seven days.

Realistically, I can't entirely escape my cancer while I'm here. Still plenty of reminders - the pain from surgery, plenty of pills to take, and the oppressive constipation that comes from surgical anesthesia and pain medication that, believe you me, can turn anybody into one bitter pill. But something about putting distance between me and those who treat me makes me feel more free from my cancer.

Now that we are here and settled in, I'm starting to relax, body and mind. I've got several distracting yet mellowness-inducing projects to work on including:

1. several knitting projects including a winter hat for #1 and baby blanket for Ginger #4
2. recording a book for Ginger #2
3. reading #3 & #4 Flavia de Luce mystery novels
4. sketching
5. awesome used bookstore tour (six in the area!)
6. Enjoying the nature of this place and the company of my oh-so-lovely husband and wacky lab.

Comfort comes in small slices for people with stage IV cancers. For me, my small slice of comfort today is that for these seven days, I have decided to be cancer free.

(Ugh. That feels so pathetic. Sigh...)

Report: Biopsy, compression screws and treatment changes

There’s a lot going on in Ruth’s Wonder-full world of cancer lately. I’ll try to report it as succinctly as possible. This post is for reporting purposes only. Reflections may come later.

 

Biopsy: My onc suggested to me that I submit my tumor for large-scale genetic testing. A place called Foundation Medicine has invented a new test that analyzes tumors for more than 200 genes / mutations. The tumor will be tested for mutations for which it has already been tested (in case someone goofed) for which there is targeted treatment, and also for mutations for which there is currently no treatment. By knowing what your mutations are, you are more likely to be involved in and benefit from clinical trials. They had run out of my original tumor tissue, and so last Wednesday, I had a needle biopsy (which I gotta say, is the easiest procedure I’ve had yet). Realistically, it will take about a month to get the results.

Compression screws: The first part of July, I fell (I’ll spare you the details) and, although I didn’t realize it at the time, I cracked my left femoral neck bone. The bone was already weakened from an old tumor which had left the bone soft/hollow and ready for injury. In order to keep the crack from becoming a fracture for which I’d have to have a hip replacement, the doctor is going to insert three compression screws from the outside of my femur through the femoral neck and into the femoral head, holding all of the pieces together. Surgery is tomorrow and then at least two weeks off of work. I have a couple of knitting projects in the hopper to keep me from going completely bananas.

Treatment changes: As I’ve mentioned before, my cancer had started to grow – slowly – but grow. With two scans – both lung and bone showing growth, it is now time to change my chemotherapy mix. My onc originally gave me two options – one more toxic than the other. I opted for the lesser toxin combined with an agent that I used in my original, non-maintenance chemo (carboplatin + gemzar). I’ve also asked to stay on the Avastin to keep brain mets away and there will be a new skeletal agent as well. I’m a little concerned because instead of treatment once every three weeks, I will receive treatment once a week for two weeks and one week off. It sounds like a good recipe for one sick puppy to me.

At this point, I’m not sure if they’ll be waiting to get the genetic testing results back before this new chemo or not. There’s also some new experimental immunology-type treatment that’s in the hopper with my onc. I think she’s applied to receive some or be a part of a study or something. If that comes through, I could be eligible and that would be a different course of treatment. Again, I’m not sure what the timing is on that either.

Until I do, I am striving for 

 .

 

The Titanic – A Cancer SurvivorSHIP metaphor –(yuck, yuck)

The Titanic, as most readers will know, was a British passenger liner that sunk on its maiden voyage after colliding with an iceberg in the northern Atlantic Ocean. The craft carried 2,224 people, including the crew. My guess is that none of the people who boarded that ship on April 10, 1912 doubted that they would survive the trip. Some of them did, but many, sadly, did not.

Now, using the ‘logic’ that we use to call people cancer ‘survivors’ (anyone who has ever been diagnosed with cancer), all of the 2,224 people on the Titanic were survivors. They boarded the Titanic. They stayed on the boat for a period of time. By today’s standards, they could have all owned and proudly sported t-shirts that read “I am a Titanic Survivor!”

Really?

For the sake of honest communication, the term ‘survivor’ should to be applied to people who go through something, live through the during part of the something, and then continue to live after that something is over.  The term may be accurately applied to people diagnosed with early stage cancer, although I think many of them will never feel like their trip on the cancer Titanic is over.

For me to say, “I’m a lung cancer survivor!” is a complete misnomer. I’m surviving cancer, but can I survive cancer? Surviving and survivor mean different things. One is for the present. One is for the future.

Popular culture encourages our say-it-loud, say-it-proud pronouncement of cancer survivorship and unfortunately, American economy enjoys great boons from the cancer survivor ‘market’. Think of all of those wrist bands, survivor t-shirts, breast cancer walks with its accompanying push to buy, buy, buy (“The more of us who walk, the more of us survive!). And let’s not forget the month of October when you can buy just about anything in pink - from yogurt, to Barbie dolls, to footballs, to electric mixers. And cancer survivorship marketing must work very well, as it has now been discovered that some companies color their products pink so that people will buy them thinking they’re supporting those with cancer (I use the breast cancer example because of its prevalence.  Other cancer types are catching up).

So for those of you who have actually survived your cancer, like The Unsinkable Molly Brown survived the Titanic, I am nothing but happy for you. For those of you who believe that your story will more likely resemble that of the 1514 people who did not survive, you’re not alone.

 

Titanic Memorial in DC

 

The Miracle of B-12

Allelujah!!!!!

 

 

HubbyMan & I just got back from a camping/hiking trip in the UP of Michigan. For any of you who have ever been there know that the mosquitos are extremely large and extremely aggressive. We had heard that if you take B-12, it would make you less appealing to mosquitos. I had not tried it before because I get a vitamin B-12 shot every three chemo rounds and frankly, bugs don't seem to care for me as much as they do KB, but he was handing them out so I took them.

 

I don't know if it did anything to keep the mosquitos away but what it did was much, much greater. It freed me. From my nasty, chronically depressed state of mind. So much so that I realize that I hadn't even known what a heavy, depressive burden I had been living with.

 

Perhaps the people who read my blog had figured that out already(?)

 

Anyway, I won't say that it's turned me into a slap-happy/silly person, but it has definitely taken the dark edge off of my mood. I feel  solid and stable and...normal. I don't feel weighed down. I feel ... lighter. And it's a wonderful thing.

 

I haven't even asked my doctor about it because I just don't care. I haven't felt this mentally good in a long time and that's worth a lot to me.

 

So if you are suffering from the mental oppression that is cancer, consider taking vitamin B-12.

 

(I am not a doctor so, unlike me, you should probably ask your doctor about whether B-12 is a good option for you. I say this because I don't want to be sued. I've got enough on my plate without frivolous litgation. Seriously).



 

Oh cherry-flavored, sublingual, 500 mg B-12 tablets, I love you!

 





Stage IV Cancers and Misunderstanding Chemotherapy

The following link will take you to an article that I ran across this article several months ago. It talks, very directly, about the function of chemotherapy in the treatment of stage IV cancers versus the perceptions of the people who undergo that treatment. I find this very real disconnect highly disturbing. I'm not sure if there's bad communication between doctors and their patients, if popular culture has something to do with how patients think about their the possible effectiveness of their treatment, or if it's merely a way that people cope with being told that they will die sooner than they originally expected. Whatever it is, it seems to show that people aren't necessarily grounded in the reality of their situation.

Ultimately, it is also about death, which some people find off-putting, so read at your own risk:

http://newoldage.blogs.nytimes.com/2012/11/12/what-chemo-cant-do/

Cancer Walks and Major Freakouts



This past Sunday was the Lurie Cancer Survivors Celebration Walk. I was all poised to go with 11 family members & friends. I had registered, order and picked up the t-shirts. Family was parked in various positions in small living room. Friends were ready to meet us at Grant Park.

And then…The Freakout.

All I did was put on that stupid, I’m-the-survivor-in-purple t-shirt and it started. A creeping of the skin, a growing nausea in the pit of my stomach and then….

BBBBLLLLAAAAHHHH!!!!!!

I bawled. And bawled. And bawled. On and off. For like four and a half hours.

It felt like that by putting on that shirt I was putting on my cancer all over again. Wearing it. Out there. For all the world to see.

And I FELT it -the oozing, creeping, lurking black-sludge adenocarcinoma that I will not survive.

It’s in here. It’s in me. It IS me.

Why the hell was I putting on a purple t-shirt and planning and going out there and celebrating it?

The family, confused at first, rallied around me. My oldest told me, “Mom, if you don’t want to do this thing, just say so.” I replied, “I don’t want to do this thing.” “OK,” and she was off to call people who were on their way.

My wondrous husband who is largely cerebral held me and told me to let it out. He talked to me and helped me go through all of the emotions with my mind, using language like I like.

My sister arrived and told me that it was so good that I was doing this and talking about it. It was healthy.

It felt like a hard vomit - the kind that leaves you sore and exhausted, and still a little sick after.

Then we went to my sister's and had burgers, brats and hotdogs.

Today, I still feel a little dazed and tired, but I am mostly profoundly and solidly thankful for my family.

I will celebrate them – instead of this crummy, nasty-ass cancer.

Answers to Questions: Cancer Walk 2013

I was suprised in April when I was invited to have my photo on a banner for the Lurie Center Cancer Walk this year. Part of my participation includes the possibility of my 'story' being on their website. I was asked to answer some questions about my cancer experiences and in today's post, I'd like to share those questions and my answers.

 ·         Would you tell me a little about your story? When you were diagnosed?

 I have always lived a fairly healthy life – I ran, ate well, never smoked, only occasional drinking. In the summer of 2010, I had stopped running after a hernia surgery but was walking about 5 miles a day. At that point, I started to experience some groin pain. I thought that I had pulled something so I took it easy and babied it, but it didn’t go away. Once released from the doctor post-surgery, I tried to run and it was impossible – it was way too painful, so I went to a sports doctor. She took an xray and saw something that looked suspicious. She thought I had a compression fracture so I had an MRI which, on October 4, 2010, revealed multiple bone metastases - the main one in my right femoral neck that had been causing the pain took up about ¾ of that bone. She put me on crutches right away and I was admitted to the hospital the next day for multiple tests and scans to find out what it was. They thought it was lung cancer but couldn’t get enough tissue to confirm. I was scheduled and had surgery to repair my femoral neck at which point they used that tumor for the biopsy which confirmed that I had Stage IV adenocarcinoma. Total bummer. I had multiple metastases to the pelvis and spine, brain, and one in the liver. I underwent radiation for the hip and gamma knife for the brain. We began to talk about other treatment, so in January 2011, I had a VATS surgery to get more tumor tissue to test for genetic mutations which came back negative. My only option was chemo.

To cope, I read a lot. I was a sociology grad student at the time and so this was my inclination. I read about cancer (Emperor of Maladies – awesome!), I read about death , I read over 25 first-hand stories of people who had died from cancer. All this (I think) to ‘face the monster’ so to speak - make friends with death so that it wasn’t so terrifying. And frankly, all of that reading helped. It made me realize that I am not special. How can I feel sorry for myself when lots of people get cancer and lots of people die from cancer, many much younger than I am. Shit (excuse me) happens and this time, it happened on me (which congers up a fairly amusing picture).

 ·         The impact on your family and/or work?

I missed work for the hip and lung surgeries. During the initial six rounds of chemo, I missed work every three weeks on the Friday of chemo and the following Monday.  Once on maintenance chemo, I would miss only Friday. Now I only miss Friday afternoon. I have tolerated the chemo well and, although I get tired, and have some intestinal ‘issues’, work is pretty much unaffected by my treatment. In fact, I started a new job in January (same place, different department).

My family has rallied well. I wanted to talk about death a lot – I think to sort of make friends with it so it wasn’t so scary, and that freaked them out for a while. My daughters and sister have been around for my initial treatments and surgeries. Other than that, I haven’t really required much care, which is good because no matter how much you love your family and they love you, you really don’t look forward to the day when someone has to wipe your butt for you.

   ·         What advice do you have for someone newly diagnosed with cancer?

Much of cancer is a head game. You get this horrible diagnosis and you start to feel sick even though days before your diagnosis you may have been feeling fine. It’s like this every time you have an ache or a pain. You convince yourself it’s the cancer and you start feeling sick. Not to be trite, but you do have to live at this very moment. I feel fine NOW. I am living NOW.

It’s also good to decide what is important to you and what helps you cope and do those things. I’m active in my church. I volunteer. I knit.  I write a cancer blog. I read interesting books. I hike. I fly fish. Most importantly, I try to have a sense of humor.  I am also thankful  at 2 ½ year post diagnosis when most of my cancer cohort are dead, that I am well enough to do and enjoy all of those things.

   ·         Do you have advice for caregivers you’d like to share?

This is a tough one. Don’t let yourself become consumed by the person you’re caring for. You need to get out, do your own thing, and recharge so that you don’t go completely mad and become resentful, and also so you have something to bring back to them.

  ·         Was there someone special on your health care team whose care or support was especially important to you? (Not necessarily looking for a name, but more the role the person played in your care)

My sister. We had been estranged before the cancer and now we are thick as thieves. She’s just there – providing post-vomiting comfort, telling me to hang on when I didn’t think I could take one more treatment, and listening to my death-themed rants - she gets it. I don’t have to explain anything.

   ·         Why did you come to Northwestern?

Well, I wish I had the typical marketing answer like, “Because I knew by reputation that I would receive spectacular care by their warm, friendly, first-rate oncologists!” but honestly, it was convenient in location to the CTA… oh, and I could have all of my doctors in one place.

I will say this though; I have recommended NW to others. I definitely think that if you have cancer, the way to go is a university-affiliated center. Plus, I just love Rebekah, Dr. Johnson & Dr. Peabody. They are first-rate.

·         Did you take part in a clinical trial?

I did not. I tried to sign up for one, but some of my liver markers (whatever they are) were too high and I wasn’t allowed in. I stopped talking to my liver for a while after that, but we’ve since reconciled and get along fine.

·         Anything you’d else you’d like to add?

I have a problem when I hear people put a perky, positive spin on cancer. Granted, you can learn a lot of things by having cancer, but nothing that you couldn’t have learned through other means. Given the option, I’d rather learn them without the diagnosis, thank you very much.

Having cancer is not a blessing. It is not a gift. It is fear and pain and suffering, sadness, despair and longing. You can’t make it pretty by putting a wig on it or tying it up in a pink bow.

Don’t let anyone tell you otherwise.