Wednesday, August 27, 2008


Last year, while going through Hyper CVAD and an auto stem cell transplant, I discovered that I'm stronger than I thought.

This year, while battling my mystery illnesses, I'm discovering that I'm weaker than I thought.

Seeing myself as strong and resilient was a big part of my image during chemo treatment. My goal was to keep the pep in my step and to never look or act like a "sick" person, regardless of how I felt. I was able to throw a baby shower for my god baby on a Saturday afternoon and then drive myself to the evaluation and treatment center at CoH for bloodwork. I found out that my hemoglobin had hit an all-time low of 7.6 (12 is low normal). Who knew? Certainly not me. So I spent my Saturday night getting a transfusion while the staff played disco tunes from the 70's. Memorable evening!

As strange as this may sound, I especially didn't like my doctors and nursing staff to see me as "sick." The nursing staff often joked, "Is she a patient or visitor?" because I always wore comfortable but stylish yoga-inspired clothes, not hospital gowns or pajamas during my stays at Hotel Hope. God forbid that I should look like a patient. I loved it when Dr. Forman said things like, "I thought you would look sick as a result of (fill in the blank), but you don't."

But all of that has changed. A couple weeks ago Dr. Forman saw me for the first time being transported in a wheel chair. I was mortified and half jokingly hid my face from him.

Last week my friend Karen brought me out to the City of Hope. I walked on my own steam to the clinic exam room and then asked one of the staff to let Karen know where I was. She and the nurse came in with the wheel chair. I asked the nurse to please remove the incriminating device, but she explained that they used it to carry Karen's bags. I did not want Dr. Forman to think that I had to be wheeled into the exam room. Finally, I said to Karen, "Please, you have to get that out of here. It's very distressing for me." I look at it as a mocking symbol of my weakness.

Now when I say that I don't want my doctors to view me as "sick," I mean that I don't want to LOOK sick. I think I've been very good at communicating all of my symptoms, but I do it in a clinical way, as though I'm talking about someone else. But with my stick-thin frame and low energy level, I'm not fooling anyone. I no longer look like a "well" person.

After I recovered from my lung damage in January, I felt invincible. After nearly a year of treatment and a successful remission, I felt I could do anything. I pushed myself physically, professionally and personally. I took risks. I was not afraid of failure. I decided to start my own marketing consulting business. I made a life-changing personal decision about a relationship. I pole danced in front of 300 people.

All of that suddenly changed in July, at the onset of this illness. Now I'm plotting how to get up and go to the bathroom without passing out.

I know that there must be a lesson in all of this somewhere for me. I just don't know what it is.


Barbara Roth said...

No lesson I can pull out of your story, except maybe its okay to be sick when you really are sick. Its not your fault you got some stinky cancer, its some random quirk from the universe. Nobody wants you to look well, when you're not feeling well. You have seen me and many of your friends I am sure throught tough times when we have not been well, physically or mentally. Now let us love you and pull you through this illness.

Paula L. Johnson said...

I think your lesson may be found in the many comments on this blog.

Your friends love you and value you for who you are, not what you do (or don't do) or how you look.

Don't be so hard on yourself. Ditch the "shoulds" and "musts." Take advantage of every single thing that makes your day easier or better, including wheelchairs...

and onion rings.

Trish said...

one of the hardest things for me has been to admit sometimes I need some help, that I cannot do it ALL, that some days, the disease (or treatment) is winning---not many days, mind you.

I have learned to take naps, sometimes spontaneously and yet still reluctantly. The day I took a 3 hour nap I knew something was really wrong!

I suspect there are lessons we just "have" to learn and until we do, someone (aka G-d etc) will keep trying to teach us until we get it!

I agree with paula---don't be so hard on yourself. There are days your body is going to say "HAY, don't do that chemo/tranfusion/radiation cr@p to me again!". You may be eons away from the treatment, but the body remembers, and bites back.

Hang in there, take the wheelchair.
Really. Take it.


Mrs. Duck said...

Sweet, brilliant, courageous Susan,
The lesson is what you create from what happens, not the happening itself. You have always found - i.e., created - beauty, truth and love from everything that has come your way. You are doing it again now, with your powerful, inspiring honesty. Every one of us knows what it is not to live up to some ideal goal we've set for ourselves - to fail, often for reasons beyond our control (e.g., not being blessed with the emotional or physical constitution, or the talent, brains,or opportunities, necessary for our dreams to come true). But hardly anyone ever admits it. It takes real guts, and incredible sincerity and trust (both of oneself and of others), to see and then bare that part of oneself, publicly, for all to see. Thank you for doing that. You are showing us all the beauty and power of truth, acceptance and gracious humility. Perhaps not a lesson for you -- but certainly one for me and (I venture to guess) the rest of your readers.

And now for some more mundane matters ...

Does Dr.Foreman know that you recently passed out? What was his reaction?

Why are you still sleeping on the second floor? Isn't there a room on the first floor that you can move into?

One Cinnabon has over one thousand calories. Maybe you should add those to your diet? Cheese is also caloric, and tasty, and chock full of calcium, which is always good when you're on steroids.

I love you and, even though I am not the praying type, I am praying for your full recovery in body -- in spirit, you're still in top form.

With much love,
Mrs. Duck

Karen said...

Okay, that solves the mystery of the wheelchair in the room. I actually thought you didn't want ME in the room (perfectly understandable for privacy reasons) and I backed out of there so quickly I almost dropped my lunch! ;-)

I've always figured you have to look and act as sick as possible when seeing a doctor, otherwise they won't take your complaints seriously. After all, they are trained to not only listen to your words, but also to evaluate the more subtle things that give away your condition.

So if you're giving a litany of ills but you've got your "game face" on and are pepped up to look and act your best, they may not get the full brunt of how badly you truly feel. ("Well, she's talking about feeling tired but she looks just fine and isn't using the wheelchair, so how tired could she really be?") That's how doctors think! They don't rely only on words because oftentimes people don't evaluate their own situations properly.

Then, they might underestimate how sick you are and they won't take the serious steps to get you well. If Dr. Forman saw you in a wheelchair and you tell him you can't walk to the bathroom without fainting, he might decide you need to be in the hospital so you can really rest 24/7 and be monitored until this pneumonia (or whatever it is) goes away.

Here comes my scold (and please forgive me for it): Being a hero is a wonderful thing in many, many situations and all of us minions here absolutely admire you for your can-do, positive attitude. But right now you need to take off the cape and concentrate on getting better, whether that's checking into the hospital for a week or moving downstairs and letting someone come in to help you each day. (I know there would be plenty of volunteers from this group who would jump to help.)

What you've been doing - going it alone and being utterly brave - just doesn't seem to be working, and the truth is that all of us need you to get stronger again, just for selfish reasons if nothing else!

Mrs. Duck said...

I second the comments about not being heroic. What you need now, above all else,is to stop planning the next marathon and focus on the here and now. And right now you need to rest and accept help. There is nothing weak or shameful in accepting (and seeking out)help when it's needed. Graciousness exists not just in giving, but also in receiving. Now is your time to receive. Please be as loving, giving, and forgiving to yourself as you are to others.

Much love,
Mrs. Duck

susiegb said...

Oh Susan - your description of going through HyperCVAD really made me smile - it exactly mirrored mine! I always got dressed, and would never lie on my bed during the day in case someone thought I was sick!! Those were my exact words!

I remember telling my doctor before it all started, that I had never spent time in hospital, and had no intention of being one of those people I'd seen drifting through the hospital corridors in their pjs pushing a drip!!

But - different times, different 'reactions'. We were both 'lucky' going through that (very strong) chemo - others have a really hard time with it.

It's a simple equation. You're sick, and you need to get better. So you need to accept whatever needs to be done. If it's conserving your strength and being seen in a wheelchair, well so be it. If you try and hold onto the end point (being well) maybe it will help.

And doctors are actually used to seeing people in wheelchairs :) Though I entirely understand where you're coming from, and it's so much easier to be handing out advice than taking it!!

Ann said...

I just want you to know that you are one of the strongest most resilient women I've ever known. Now, take a break and let someone else shoulder the load.
Sending you lots of love from Texas,

Ronni Gordon said...

I am like you. I try to look my best when going for my doctor's appointments, as though that will protect me from bad news. And in the hospital I too, always got dressed in yoga-type clothes and enjoyed a doctor coming in and asking where the patient was. And I always fought the wheelchair. It's difficult to give in to it when we feel sick, but it takes extra energy to fight it. So I agree with everyone. Take advantage of the help and save your energy for healing.

Petrea said...

Susan, I've just been browsing here this evening, learning about you, learning about your friends.

I would do the same thing, were I in your position. I wouldn't want anyone to think I was sick. But of course your friends are right. I'm sure you know that.

The tea party will be held when you're well, young lady. And what a party it will be!