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.