I'm not certain when this desire for privacy descended upon me. I obviously was not suffering from it when I made posts like about my nipple failure and cervix removal. But, I guess time has created distance from the crisis of last year and I feel a little less like "here is my world: be in it" and a little more like "none of your business. Leave me alone."
However, yesterday Jen posted that she hadn't seen an update in a while and that she hoped everything was better. Me too. Sadly, this is not in the cards for me. I'm not sure what I have done to upset God or whatever greater power it is that holds meaning for you, but what the *&%#?
It appears as though another battle lies in front of me. It is not cancer, luckily, but "possibly rheumatoid arthritis and/or a systemic disease that can affect all parts of the body." Oh, also, there is no cure. Whoop, whoop. For this, I will break my blogger silence and for this I will again ask: "what the &^$@?"
It all started a few weeks ago with a little pain in my finger joints. This has happened before, and is a documented side effect of Tamoxifen, the drug that I will take for five years to block the absorption of estrogen. Three weeks ago, I saw my oncologist for a regular three-month visit and he told me to take some tylenol for the pain. He also said that if that doesn't help, we could try something stronger, like ibuprofen. Yes. That is so re-assuring. Tylenol will certainly help with the fact that I cannot bend my fingers enough to hold a toothbrush.
A week later, the pain was continuing to spread to other joints in my body. Affected were: my right knee, the arches of both feet, both hands and my left ankle. I called to complain about the lack of positive progress with the tylenol regimen and I was told to stop taking the tamoxifen for a three week trial.
The trial has proven to be a failure. My symptoms are worse now than they were two weeks ago. In fact, each day is more painful than the last. Which reminds me of this quote from Office Space:
Peter Gibbons: "So I was sitting in my cubicle today, and I realized, ever since I started working, every single day of my life has been worse than the day before it. So that means that every single day that you see me, that's on the worst day of my life."
Dr. Swanson: "What about today? Is today the worst day of your life?"
Peter Gibbons: "Yeah."
Dr. Swanson: "Wow, that's messed up."
Today is definitely not the worst day of my life. Whatever this is, certainly cancer was worse. But, yesterday, I could not put any weight on my left ankle; Scott offered to carry me to the shower. I walk down the stairs with jerky and spastic movements that closely resemble Tucker fron There's Something About Mary. I sleep with wrist braces. I am unable to lift a gallon of milk with one hand. I have been waking up with intense pain in my shoulder ... or thumbs ... or knees. Luckily, the pain subsides over the course of the day and remains at bay until I enter a period of inactivity. So, when most of you see me, I'm in fairly good shape. It is only my family and work friends who see me in my morning crippledom. I guess that is a silver lining.
In summary, I have an as-of-yet undiagnosed illness. The preliminary bloodwork and my symptoms are consistent with rheumatoid arthritis and Sjogren's syndrome. I am in the process of scheduling an appointment with apparent new best friend, the rheumatologist. I'll know more in the coming weeks, but I would like to leave you with a list of possible symptoms to which I may look forward:
- corneal ulcerations
- autoimmune pancreatitis
- recurrent bronchitis
- a sore or cracked tongue
- primary biliary cirrhosis - whatever that is
- dental decay
- neurologic "problems" - as if I need any more of those
- debilitating fatigue
- nodular subcutaneous legions
- tethering of joint tissues
- deformity
- etc., etc., etc.
- Oh, and an increased risk of lymphoma - that old thing
12 comments:
I am responding, although I have very little idea of what to say. We already said oh /:@ and things.
I already said you are not alone, not sure how much comfort that is....perhaps looking at one more healthy pain free person is really no comfort at all.
I am trying desperately to remember what made you feel better when you were just a little one.
I think the Puffin Poem was comforting, Nana's soup was always helpful, a new outfit could perk you up.
This will have to do.
Oh there once was a puffin just the shape of a muffin and he lived on an island in the bright blue sea.
And he ate little fishes that were most delicious and he had them for supper and he and them for tea.
But thisnpoor little puffin, he couldn't play nothin, for he hadn't anybody to play with at all.
So he sat on his island and cried for a while, and he felt very lonely and he felt very small.
Then along came the fishes, and they sad if you wishes you could have us for playmates instead of for tea!
Now they all,play together in all sorts of weather and the puffin eats pancakes like you and like me.
I hope you feel better and I love you forever.
Mom
Oh #@*&! Liz...I am speechless...I really wish I could say or do something that would make all of this go away. You are constantly in my thoughts...xoxo ~mp
I am annoyed with this diagnosis. I am annoyed for you. And I know you will again get to a point of "good"...but in the meantime...Drink.
Ah gee - I'm so sorry to hear this, Liz. I'm praying that you can get to the bottom of this quickly and that things start to look brighter for you very soon. Sooner than soon. Soonest.
Love and hugs.
I hope they figure this out for you, mostly so they can start the appropriate medication (ew, more medication!) and maybe get your joints feeling better. Crossing my fingers that it is something like.... sore joints that can be treated with gummi worms and jolly ranchers. :-)
My first response at your post was a long, long string of curse words, but as that may not be appropriate for many of your readers all I can think to say is, I'm sorry. You are in my thoughts.
Sucky. I can't think of anything else appropriate to post on the internet. Sending hugs and prayers and love. - A
Oh Liz,
I hate, hate, hate that you are dealing with any of this. Life is SO unfair sometimes. I don't have the "right" thing to say or even anything witty to say. But I love you and I am thinking of you and, of course, continuing to "expect miracles".
So....I'll be sharing that bottle of wine next week :)
Hugs. And know that your friendly pharmacist is always there to help.
Megan
Ya know – I just spent about an hour looking through your older blog-posts and couldn’t help but laugh out loud. I think my two favorites have to be the one were you use your Sucktastic Scale (in which case I think this new junk you are dealing with has to rank up there in the majorly sucktastic category) and the Are you Feeling Litigious where you had the pictures of some good examples of what not to look like after plastic surgery.
There are many others that are great, but these two rank up there at the top. This has been a long (and unfair) journey for you and your family. But your humor, grace, and strength are beyond admirable. And so is your honesty.
So I was really hoping that by now your story would have the happy ending that we are all waiting for you to have. You know - where the cancer is gone, and your body is back to normal and you are feeling better then you ever have and you say ‘Yah – I beat it! Suck it cancer.’ But I guess it’s going to take a little bit longer. Don’t get me wrong, you WILL get there, but unlike in a book we can’t control when that time will come.
I look back at how you optimistically started this battle by quoting a very wise soul: St. Francis de Sales
Do not look forward to what might happen tomorrow;
the same everlasting Father
who cares for you today
will take care of you tomorrow,
and every day.
Either He will shield you from suffering
or He will give you unfailing strength
to bear it.
It can’t be easy to remain optimistic when life’s obstacles keep getting in the way, so it’s ok to be sad and to lean on family and friends until you get your strength back to fight again. Muhammad Ali has a great quote:
It isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe.
This is just another pebble.
You will make it through this!
You will beat this!
And
You will kick-ass in the process!
-Jen Glenn
I shall make some soup straight away.
If I remember correctly, Winnie the Pooh used to be great at making us feel better, by which I mean, getting us to sleep. Perhaps this is worth a try?
You already know how I feel about this. And many people who love you have echoed it here.
If I can help, please ask. (Though I'm guessing your refusal to let me pour the milk is an indicator of your feeling on this matter.)
Love you always.
Heather
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