Clusterfook update

Please go read an update on our dear friend and contributor, Lisa, from Clusterfook.  She has brightened our days here and spoken truth about cancer.  Most of all, she has spoken love of her children, and worked to help them have good memories of this time and lessons that they will take with them forever.

Lisa, we love you.  Go in peace.

Edited to add: Lisa’s gone.

Access

Things had been going so well. I’m in remission, my kids are happy, and I was out of the house today, doing the work I love. Things went great, all day … until I walked into a building downtown and was verbally accosted.

I try not to let it affect me, but, let’s face it, I have a physical disability. It’s called lymphedema, and when my arm and core swell, I have to start treatment again. I go in for daily physical therapy and walk out wearing a giant wrap on my arm that takes 8 bandages, rolls of gauze, sheets of cotton, and several pieces of compressible foam to apply constant pressure on my arm, hand, and fingers, reducing the swelling, eventually, to a manageable size. I can’t grip a thing, including my mouse, which makes typing darn difficult. But the problem here wasn’t with my work. It wasn’t with my typing. It wasn’t even about feeling self conscious anymore.

It was about access. Pure and simple. Because when I walked in the building at 500 E Street S.W., the security guard stopped me, saying, “I told you before. You can’t use that door.”

“What?” First of all, this is the first I’m hearing this. Second of all, why not?

“You have to come in the middle doors,” he admonished me. “You can’t come in that door.”

“I don’t understand. That’s the handicap door,” I said, baffled.

“I can’t open the regular doors.” I said.

“I have a handicap.” I said.

He just stared ahead and continued taking me to task.

As I cleared the metal detector, I gathered my courage and spoke up, addresssing both security guards this time. “They’re handicap doors. I have a handicap.”

No response. I went upstairs and dropped off some files, and came back down. I was spitting mad. It threatened to ruin my trip home. But I thought about what my blogfriend Liz would say about this, and I decided to stand my ground.

I asked to see his supervisor.

I waited.

I waited.

I waited, having a difficult time standing in the stone foyer.

After 20 minutes, the security chief appeared. I told him what happened. I told him that I have a handicap. I have had cancer, and I don’t have much strength in my arms and back to pull heavy doors like that open anymore. I pointed to the sign on the door that said “For emergency and handicap use only.” I mentioned that I have a handicap.

Those doors are there for a reason. And you know what? People with disabilities shouldn’t have to go around proving it before they’re allowed to use reasonable accomodations.

Why did I have to tell this stranger that I have had cancer? Why did I have to admit out loud, “I have a handicap,’” in order to be able to enter the building and do my work? I don’t know. But I think it begins with ignorance.

Friends, if someone is using disability accomodations, and you’re not sure they should, please consider the fact that not all disabilities are visible, and that they are not constant over a person’s lifetime either.

Just two years ago, I was healthy.

Crossposted at Toddler Planet.

Book Review – The Middle Place

Kelly Corrigan had a good life. In her mid-thirties, she was in a good marriage, had two young beautiful daughters and led a happy existence. Her world turned topsy-turvey in August of 2004 when she found a lump in her breast. She started chemotherapy right away, handling the side effects (including loosing her hair) with grace. Then, right before Thanksgiving and almost at the end of her own treatment, her mother calls to tell her that her beloved father George has been diagnosed with cancer.

Corrigan’s memoir is the story of her own journey to becoming a breast cancer survivor and it is also a love letter to the man who shaped the woman she became – her father. Each alternating chapter Kelly writes about her childhood in Philadelphia with her mother, two older brothers and her loving, bursting with personallity father George “Greenie” Corrigan. The Middle Place, which the title references, is the time in which the author found herself a successful wife and mother of two and the fearful, childlike daughter of George and Mary, right between adulthood and still being someone else’s child.

And that’s what this whole thing is about. Calling home. Instinctively. Even when all the paperwork – a marraige licence, a notarized deed, two birth certificates, and seven years of tax returns – clearly indicates you’re an adult, but all the same, there you are, clutching the phone and thanking God that you’re still somebody’s daughter.

It was easy for me to relate to Ms. Corrigan, since there are a number of similarities between her own life with cancer and mine. Both virtually the same age at diagnosis with the same type of breast cancer (Invasive Ductal Carcinoma) I also have two young daughters and have had to adjust to life with cancer as a young woman and mother. I started this book early one morning and devoured it within the day. I just couldn’t get enough of the loving way Kelly wrote about her father, or how she explained her honest feelings about having cancer.

There were many passages in the book that were touching, funny and very sweet. Like when Kelly told her mom that she had cancer:

I know her job is to keep me from harm. After all, I am a mother now too. I know what it is to want to safeguard your children. It starts with the first prenatal vitamin and it never ends. Safety gates, life vests, fire drills, swim lesson, CPR. And still, one day, the kids you’ve been so careful to protect might call to say she has cancer.

Or when she decides to send out an e-mail to her friends and family about her progress with treatment:

I send out an e-mail, tinkering with every sentence. It has to be upbeat so people won’t worry too much and funny so they won’t be scared to write back. It’s a big job, being the first person your age to get cancer.

I could have written that paragraph myself. Or maybe this paragraph, which brought me to tears, talking about her friend Jen who had just lost her mother (have just lost my own mother last year, it was especially touching):

 When I called Jen to check on her, she told me that people were swarming around doing what people do: flowers, food, cards, calls, favors. She said just about everyone said something like, “Your mom had a good life. She had a lot of happiness. She was so uncomfortable. Now she’s at peace.” Well, yeah, okay, good for your mom. But what about you? What about your peace? Your comfort? Who’s gonna remember what you were for Halloween that year or the name of your fifth grade teacher? Who’s gonna loan you money to buy your first house or cry when your baby is born? Who’s gonna sit in the front row of your play?

Lastly, the author writes about her reaction when told by her oncologist that her treatment would put her in early menopause, therefore unable to bear any more children:

They talk about cancer like it was something to get through, to treat, to beat. They never said it was going to change everything, all my plans, and take things away from me that I have wanted since I was a child. They said it was going to be a bad year. So doesn’t that mean that when the bad year is over, when you do everything, when you do everything you are told to do – and with a goddamn smile, no less – you get to go back to the life you had?

The Middle Place has been released in paperback recently and you can find out more about the book and the author at her website.

Cross posted at Stephanie’s Written Word

It’s Been A While…

Hello all, I know this is a bit of a surprise, me doing a post after so very long and I realize I am being very presumptuous in thinking I am still allowed to post here at all but I did see that my picture and my name are still on the site so I took that as permission for now.  Thank you if you haven’t decided to get rid of me and if you have well then this post can be deleted I guess.

Anyway, here I am, wondering what on earth to talk about, I guess I will discuss what is on my mind lately and that is pain! The battle I have had with ‘cancer pain’ is just incredible. Early on in this disease, I was informed that no-one need suffer pain in this day and age. That no-one suffering cancer would have to put up with pain for long. Well, let me just tell you that that is a load of absolute….you know what! I have been battling acute and chronic pain for years now.  I have had a break here and there during those years, however, for the most part I have suffered relentlessly. I have nerve pain, the main tumour, which is in my pelvis, is touching the nerves in my lower spine. When it first started hurting it was horrible, but, I had hope. I had hope and that hope was founded on so called facts. Facts I had been fed by the medical profession. Huh, ‘facts’ my behind (literally lol). They had told me that I would not have to suffer pain and here I am two years later and still suffering agonizing pain. It is so bad I can only compare it to childbirth but without the reward at the end and without the breaks in between contractions. So bad, that I have been reduced to a sobbing mess writhing around on the kitchen floor. So bad that one time when my nurse was present, seeing me suffer like that reduced her to tears. So why was I allowed to continue on in this amount of pain? Well because it is nerve pain! Nerve pain is a different kettle of fish. Well, of course, when they told me no-one should have to suffer pain they didn’t actually mean nerve pain, oh no, that is terribly tricky to fix. The main way to ‘fix’ nerve pain is to use so many drugs and such strong drugs as to render you almost unconscious and even then, when the room is swirling and you think you are Nicole Kidman chatting at an afternoon tea with Brad Pitt, you can still feel, way down deep……..nerve pain. Admittedly it is a lot less violent but still there nevertheless. Now, yes, the pain is much more bearable but do I want to spend the rest of my days semi conscious thinking I’m Nicole Kidman (well that may not be all bad) but come on, I have a child living with me, I cannot function when I am off my nut on ketamine and methadone and pregabalin and I could go on and on but you get the point. Not only do I need all these medications, they are extremely difficult for me to get.  I have to pretty much jump through hoops to get my hands on both methadone and ketamine. I have to get the ketamine an hour away and I have been going through it so quickly that it is ridiculous the amount they give me in the first place. Same with the methadone, that is not an hour away but it has to be registered and oh, all sorts of crazy things before I can get my hands on it. I have to have a certain amount within a certain amount of days and if I need more woe betide me! That throws everybody into a spin. The problem is, the pain doesn’t just co-operate nicely into time frames for me, of course sometimes it is worse than others and sometimes it comes on more often than others and then I need different amounts of medication, honestly you would think I’d asked for a small country to be given to me. What a carry on! So this has gone on for quite some time now and I am coming to the end of my tether. All these drugs aren’t working well enough and all the hoops I have to jump through to get them is simply not worth it anymore. However, I have to have something done about the pain. I am seriously considering marijuana. I haven’t resorted to that yet but I feel the medical industry is letting me down and I have read of other people with cancer pain taking marijuana and having good results from it. I don’t want to feel strange or anything, I just want the pain to stop and I am getting desperate. I am probably being over cautious and should have turned to it months ago but I just felt weird taking what I have always known as a recreational drug, as a medicine. Guess what ketamine is worth though as a recreational drug… heaps! So, I don’t know, I will have one more appointment with my Pain Doctor and I’m actually going to run it by him and see what his reaction is and maybe, just maybe, I will give it a go – I’ll be sure to let you know the results if I do. What do you all think about using marijuana for cancer pain? Let me know in the comment section if you have time, I’d be very interested in your opinions. Take Care.

I’m Curious…

I was scrolling down my Yahoo! page just a minute ago when I saw a headline about a British reality TV star “dying in the spotlight.”   Instantly I thought of cancer.  When I paused my cursor over the link my suspisions were confirmed.  The reality star is, indeed, dying of cancer. 

As it turns out, I was not entirely correct in my assumptions.  I read the article thinking I’d hear of a woman agreeing to allow the world a peek at her final days in order to provide for her children’s future.  Or something like that, any way.  Not at all.  Turned out to be an ex-reality star who has since become a celebrity.  She has now been diagnosed with cancer and is terminal.   It did get me thinking, however…

Many of the women that post here at MWC have metastatic disease and will live and die with cancer in due time.  The rest of us live in fear of that very thing.  We have all been voyeurs to the process of leaving this world with grace and dignity through our friend Punk Rock Mommy.  I watched as Andrea transitioned from this life to the next, as she made special time to spend with each of her many children – every day – so they would have many memories to carry with them when she was gone.   I teared up to read that she was making out greeting cards for all their special occasions for years to come so she could impart words of wisdom at the moment they would need them most.  In short, my life and view of death was forever altered for having traveled Punk Rock Mommy’s journey with her.

So my question to you is… if you were to find yourself terminal and the offer were presented, would you consider doing a reality show?  Allowing the world to view your journey to the end of your life?  Shedding light on cancer and it’s horror?  Bringing the reality home to people in their comfy livingrooms? 

I want to say I wouldn’t watch.  But I think I would.  Of course, I’d probably watch for reasons much different than the average American…

What say you?