I Quit

I thank all of you for reading this blog, but, frankly, I'm tired of writing it.  I'm tired of having diseases to report and illnesses to detail.  So, I would like to propose this to be my last post.  Of course, if I have a cancer recurrence, then all blogs and other forums for complaint are up for renewal, but for now they are cancelled.  

Before I leave you, though, I would like to let everyone know that God has seemingly struck me down again.   This time the weapon of choice was a deer tick, which I found and removed on last Saturday.  On Thursday night, I had trouble sleeping, due to the fact that my house was apparently 42 degrees.  It turns out that my internal thermostat gauge was l little off, due to my 102+ degree fever.  When I woke on Friday, the tiny bite mark from the tick, who has aspirations to grow to be the size of a sesame seed, was red and angry looking.  

So, I went in to the doctor ... although, in retrospect should a person with a high grade fever be driving a motorized vehicle?  Probably not.

My doctor told me that I probably had Lyme Disease, but that the blood work would most likely come back negative, as it takes 4to 6 weeks for the body to process a positive result to the titer.  So, by the time I am ready to show a positive result, I will have been on antibiotics for several weeks, thus interfering with the test, anyway.  So, now I'm on a strong and long dose of antibiotics.  I'm also on a crapload of pain meds to reduce the fever that makes me alternately feel the need to sleep under a down blanket with a sweatsuit on and the need to put my head in the freezer to stop the sweating.  

Also, I have a growing "bullseye rash" at the site of the tick bite.

I'm not happy about any of this.

Most specifically, I find it ridiculous that I still have things to report on this blog.  When it started, I was receiving pressure from people at work to create a caring bridge site.  Liz has cancer ... Ooohh!  I thought that everyone could be well served by a cancer blog.  But, I never guessed that my cancer blog would turn into a failed surgery blog ... and then another failed surgery blog ... and then a lupus/arthritis blog ... and then a Lyme Disease blog.

Is it difficult to even believe me?

I'm not making this crap up.  I wish I were.

But, I'm done.  It's time for someone else to take on these fights.

I'm out.

Blogging During My Lunch Hour

It has been a confusing many weeks.  My arthritis symptoms (a.k.a. “crippledom” and “the claw”) have been zapped by a serious mega dose of steroids and a follow-up continual small dose.  I am weaning off of them, now, because who wants to end up with Prednisone Moon Face? 

This is a real thing.  Look it up.

Anywhoo, I have been to see the Rheumatologist.  He doesn’t know what is wrong with me, which is of great comfort.  Oh, wait, no.  Strike that.  Reverse it.  It is of NO comfort.  

He did a very thorough examination, bending and palpating all of my joints in ways that would impress any yoga teacher.  He looked at my lab results, from two different doctors’ visits.  He ordered a urinalysis and more bloodwork (enough to fill eight vials.)  The thought is that I have some sort of autoimmune disease, likely Rheumatoid Arthritis or Lupus.  

Neither of these illnesses have a definitive test to diagnose them; it is a combination of many factors, including symptoms.  Since I am living in the bliss of symptom-free steroid life, this is something that he cannot assess until I go off the drugs.  However, a cold-turkey approach to prednisone cessation would almost certainly cause an immediate return of crippledom, so we are approaching the problem over a period of four weeks.  Should I make it through the month (which he says that I probably won’t, because of the expected pain) then I will go back and we will re-evaluate my symptoms without the mask of steroids.  

I have also been told (by a trusted Lupus non-doctor friend) that going off wheat may help my problem.  However, as the daughter of a chemist, I will not try this, yet.  One variable at a time.

So for now, what I can report is: “The patient's antinuclear panel again showed antibodies to SSA and SSB – the antibodies associated either with Sjogren’s or subcutaneous lupus.  However, she also had a low level of antibodies to DNA.  This correlates more with systemic lupus but by itself is not enough to make that diagnosis.”

That’s all I know, which is pretty much nothing … still.

Stupid Arthritis

This is how far I can get my wedding ring on my finger, now.

My body is changing.

My knuckles are swollen.

My feet are too big for my sandals.

This morning, both of my hands were locked in a ridiculous claw formation, and I couldn't straighten them.  Comically, the fingers most affected were my middle ones, which left me totally unarmed against bad drivers, should I choose to display my displeasure with them.

What the %*&# ?

As you may have noticed, I have not been writing on this blog much.  This is due, in large part, to the fact that there isn't much to report ... aside from intimate details of my struggles with breast revision surgery, depression and post traumatic stress disorder.  None of these things warrant interesting posts, unless you are feeling like an exhibitionist, which - oddly - I am not.

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

Baby Mine

I just spent the evening with a woman who has a nine week-old baby and another woman who is pregnant.  I'm angry.  I'm jealous.  I'm nostalgic.  I'm seriously considering what I would have to do to convince Scott that he would like to adopt a third child.

I hate cancer.
I hate this stupid binder that I have to wear on my waist.
I hate the rain.
I hate

I hate everything.

I Say:

The end.

Misery

I am unable to get comfortable.

I am unable to sleep ... even with a cocktail of Oxycodone and Ambien.

Strangely, the part of my body causing me the most pain is my back.  There was nothing done to my back today.  My beloved Scott has tried everything.  He has propped my arms and unpropped my arms.  He has tried a heating pad.  He placed a small pillow between my shoulder blades.  He has moved me from the chair to the bed to the couch and then back to the chair and back to the bed.  He even tried lying flat on the floor with his arms in different positions to see if he could make his back hurt, thus pinpointing a cause.  Nothing.

This same thing happened after we came home from mastectomy in that I could control the pain in my chest by holding still, but the way that I held still caused immense discomfort in my shoulders.

It's strange how the body works.

In another hour, I can take more pain meds.  I pray that they buy me a couple hours of rest.

I also pray that part of the problem is the ace bandage tightly wrapped around my torso.  It comes off tomorrow.

So sad.

Out of Surgery

Just a quick update for all you followers - Liz is out of surgery!  We spoke to the surgeon, and he said everything went great.  We will be in the recovery room for a few hours, but should be home by dinner time.  We will update you later tonight or tomorrow.

Thanks for all the thoughts and prayers today!

Back to the O.R.

I haven't talked about it much, but I'm having another surgery on Tuesday.  It is elective.  There has been no more cancer found.  But, I will be going back to the hospital for a procedure meant to correct some of the things that did not turn out aesthetically right the first time around.

Although I have chosen to have this surgery, I am terrified of Tuesday.  As you may recall, I have previously had four surgeries and four times, something went wrong.  (A few of those times, several somethings.)

I worry about:

• going under general anesthesia
• getting an infection
• needing another blood transfusion
• not healing properly and developing necrotic tissue
• being in pain
• being unable to care for myself
• the results of the surgery being disappointing
• the surgeon accidentally happening upon another, previously unnoticed, tumor
• my children 
• Scott trying to work while caring for an invalid wife
• depression

There are a lot of thoughts swirling around in my head.  Most of them are not pleasant.  

Please pray that it all goes well.

Why Must I Wear This?

Regardless of all of my experience as a patient, I fail to see how this garment is at all reasonable.

Almost all of my doctors have gone to these paper robes. I understand that, because of their compact storage size and disposability, they are convenient for the medical world, but really, I must protest.

They don't even go all the way down to my waist.

Even people with hot flashes don't want to sit in an examination room in a cropped pink paper towel.

It's inhumane.

Distraction

My therapist wants me to listen to cd books in the car to distract my brain from unpleasant thoughts. She says that many patients with post traumatic stress and depression find the symptoms to be exacerbated while driving. I guess it's because it's quiet and you have time to be alone with your psyche. It's true for me, at least.

So far, I have heard Angels and Demons as well as The Birth of Venus, which is one of my all time favorite books EVER!

When I go to the library, though, most of the cd titles are books that I've never heard and I have trouble choosing. So, I thought I would start requesting them from other libraries.

I need suggestions. What are your top three favorite books?

All Clear

I got a call from the oncologist. Both the brain and chest MRI came back clear.

More later.

False Alarm

I didn't have an MRI.

Apparently, you aren't supposed to eat for four hours before the test. No one told me.

Also, apparently, my test was scheduled for 1:20, not 12:20, even though the orders clearly say 12:20 and the time is highlighted in yellow marker.

Also, apparently I was signed up for both a brain and chest MRI as well as a brain without a chest MRI.

Here's hoping they get their act together before Monday afternoon, when I am scheduled to go try round two.

A Quick Update

I went to see the oncologist, yesterday. All of my blood work looks great. He was not a fan of my panic and fear of death. He was also not a fan of the non-existant lights that I see flash across my eyes when I'm trying to sleep.

The Tamoxifen which works to block any rogue estrogen from binding to the estrogen receptors has a side effect of blood clots. He put me back on a low dose of aspirin, which we had previously stopped because of bruising. He also said he would like me to get an MRI of the brain, just to be safe.

"Okay, when would you like me to schedule that?" said I.

"You should get it done tomorrow," said he.

"Oh."

So, that's what I'm doing today ... partly because you don't mess around with the brain and partly because I'm a nut-case. And just for good measure, we're doing an MRI of the chest, too.

I do not like MRIs.

I do not like small areas.

I do not like cages to be placed on my head.

I very much like the sedative Ativan, which I will be ingesting in about two hours.

Stay tuned.

365 Days Ago

52 weeks ago, today, I looked like this.

I was at the hospital, getting lines drawn all over me with permanent marker. I was nauseas and terrified and excited and ready to whip cancer's devious, mischievous butt. Remember that day?

As I reflect on the past year, it occurs to me that it is all wholly unfair. I think that I have taken it in stride, sometimes laughing at the absurdity of events such as "nipple failure" and recently crying a fair amount. As the reportable incidents have decreased, it would follow that my recovery would mirror the same curve. Unfortunately, this has proven not to be the case. I still think about cancer every day. I think about it in church, when I am surrounded by fertile families with their sizeable collections of children. I think about it in the make-up aisle of Target, as I search for the perfect shade of lip liner to test out how a tattoo might look. (This is a doctor recommended activity, by the way.) I think about it when my son innocently pats me on the back and it hurts ... because of the scar tissue and missing muscles. I think about it when my daughter wants me to help her ice skate and I am winded, still not in great shape due to frequent napping instead of exercising.

Since my posts from two weeks ago, I have come to terms with the fact that I am not going to get past this on my own. Depression is like that. It creeps up and engulfs you. So, I have enlisted the help of several new health professionals and have joined a cancer support group. I'm sad to come to the realization that it isn't the cellular illness making me sick, anymore. It is the emotional aftermath of trauma.

Post traumatic stress disorder and depression are harder illnesses to quantify and they are less sympathetic illnesses to support. My having cancer was shocking. Everyone felt jolted and wanted to help. I'm not sick anymore, so I should be better. But, I'm not ... and that's kind of embarrassing.

Last week, I was talking to one of the Sisters at work. She said that making it one year was hard, but it was also so wonderful. She told me that I need to focus on the good. I replied: "No. I don't think I do." It was certainly the first time in my 34 years that I have dared to contradict a nun. I agree with her sentiment. Try to be positive. You're still here and you have a wonderful family. True. But, here's the thing: being positive isn't going to prevent me from getting cancer, again. Being positive isn't going to make this all go away. What I need to do is be open and honest with myself.

Cancer is scary ... but I'm not alone.

Below are some comments from other patients who have contacted me. I find it comforting to know that my feelings are par for the course and I thought it might be helpful for all of you non-cancer people to see my world from another perspective.

“I so understand and relate to your fear of recurrence. I see myself in the mirror or shower everyday and there is my daily reminder, no right breast. I have other women ask me why do you think about it; just live. I try to do this but the daily reality is that a part of me is missing. My oncologist started me on anti depresant during treatment and I'm still take it. Does it help? Yes, but the thoughts are still there daily. I have not had a recurrence (thank God) and should just move on but it is difficult."

"I understand your fear and concerns. I have a different type of cancer, but I think that fear of recurrence is the same. That feeling of "when is the other shoe going to drop" has been overwhelming at times. I think that in some ways recurrence fear is a self-protection mechanism, trying to protect yourself from that initial shock of your first diagnosis of cancer (i.e. if you truly move on, is a recurrence diagnosis going to be as devastating as it was the first time around). For me it was hard to reconcile the fact that life was going on, my family and friends were willing to accept that I was "cured" but I carried around this burden of worry."

"I first had breast cancer in 1989 on my left breast, In 2007, I had a mammogram that was questionable, followed by an ultrasound that didn't show anything. Then, I had an MRI, which showed breast cancer again in the left breast. Do I fear recurrence? Absolutely! I am currently on anti-depressants and will continue to be so I can get through the day. . . By the way, my 2007 breast cancer was NOT a recurrence, but a new cancer --after 18 years!"

"I have a good onco doc who is very understanding of my concerns and fears and will see me anytime I need to see him about any concerns. But here is my problem. My mammogram did not find my lump, I did , 2 months after a clear mammogram. So even though I still get a regular mamogam on my remaining breast I have no faith in it at all. I check myself and have regular breast exams. But I guess in the end I feel like it is up to me to somehow know if it has come back since it was not found by the mammogram.”

"I often feel ill when I face an anniversary or landmark related to my breast cancer. I hated ending radiation (who would be like my doctors who watched over me every day?) I feel dizzy every October. ... I remember the day I ended five years of Tamixofen; I searched for just one more so that I could be sure they worked. ... I never wanted this to be my cause. I really hate pink."

I'm glad that I'm not in the operating room, today ... but I wish that I didn't know what it looked like.

Home

After my little freak-out moment at Hallmark on Monday, everything was in a kind of tenuous position. All of my co-workers were suddenly aware that I am an emotional time bomb, unreliable and poised to go off at any moment, at the slightest provocation. Well, guess what?

BOOM!

Again, today, the floodgates were demolished. This time, Byerly's was the culprit. I went in (with my bloodshot eyes disguised behind my sunglasses) and came out with a lot of food ... and my bloodshot eyes disguised behind my sunglasses.

Heather picked me up, and we went to see a movie. Then, I returned home, opened a bottle of wine, and made a meal out of it. (Well, the wine plus a little bit of sushi and two cookies.) Scott came back from Phoenix and hugged my pain away.

Here's what I have discovered: I wish that I was sick. Really. I want to go back to the hospital and again slice off the offending parts of me. Although that period of my life totally sucked, it was also productive. Here's why: we were doing something about the cancer. I have come to the realization that I think that I will die of cancer. I realize that this is not a very politically correct thing to say. I'm supposed to say that I kicked cancer's butt. I'm supposed to say that I am a survivor. But, I don't feel like a survivor. I feel like a person who once had cancer and who is waiting for it to come back. I'd rather it came back right now. I'd rather go to the doctor this month and have him say that my tumor-marker is up. Because then, at least, we would make a plan and start trying to kill this stupid disease. Instead, I'm just sitting here waiting for it to creep back into my world and destroy more parts of my life.

Waiting is hard. I don't want to be someone living with cancer. I want to be someone who beat cancer. I don't hold out much hope that I will get there.

Suck it, cancer.

Five Hundred, Twenty-Five Thousand, Six Hundred Minutes

Well, it's been a year ... almost.

One of my doctors told me to watch out for the one year mark. He said that he has seen countless patients who are coping wonderfully just be broken by that first anniversary. Yesterday, I found out what he meant.

We are hosting a memorial service at work this week. It is for an alum who died of cancer. She graduated four years before I did. When I was little, I used to play in her house. She has two children, a son and a daughter. She had breast cancer, got better, and then got sick again as the cancer spread to her brain.

I am in charge of the event. I have been talking to caterers, liturgists, and valet parkers trying to make tomorrow night's service beautiful for the family.

My anniversary is on Thursday.

I expected that this might be difficult, but I did not expect to to fall apart in the middle of Hallmark, yesterday. I guess that I should have asked someone else to go buy the guestbook for the woman who died of cancer. I also did not expect to have a hyperventilating, gasping for breath, face tingling, weak limbs breakdown after I left the store. I'm having a tough week.

I keep having flashbacks to the phone call I took while collapsed on my office floor. I remember throwing pens over my cubicle wall to get Gina's attention as my doctor's voice on the other end of the line became blurry and incomprehensible. I remember Renee coming over with wine and a bottle of margaritas, because she was unsure what to give to a friend who was just diagnosed with cancer. I remember drinking most of that bottle on my own ... and it still not being enough alcohol to lull me to sleep. I remember that Scott was out of town and I he had to take a red-eye flight home because his wife was too sick for him to stay. I remember the horror of the office visit that next morning, hearing words like: mastectomy, chemotherapy and hysterectomy. In the following weeks, I remember my mother's birthday being an unusually somber occasion. I remember Scott needing an excel spreadsheet to keep track of all of my medications. I remember friends coming to visit me in my pajamas. I remember Heather flying in from New York to my bedside. I remember Scott's mother taking care of me, because I couldn't do anything by myself. I remember my children staying with my parents, each lucky to have the other.

I remember too much.

This morning, I was listening to the song Seasons of Love, from Rent. If you've never heard it, I urge you to click here. It's beautiful. Here are some of my favorite lyrics, which brought me to my knees as I listened today.

Five hundred twenty-five thousand

Six hundred minutes,

Five hundred twenty-five thousand

Moments so dear.

Five hundred twenty-five thousand

Six hundred minutes

How do you measure, measure a year?

In daylights, in sunsets, in midnights

In cups of coffee

In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand

Six hundred minutes

How do you measure

A year in the life?

How about love? Measure in love.

It's time now to sing out,

Tho' the story never ends

Let's celebrate

Remember a year in the life of friends

Remember the love!

Seasons of love!

Oh you got to, you got to

Remember the love!

You know that love is a gift from up above.

Share love, give love, spread love.

Measure measure your life in love.

You have walked this journey with me. You held me up when I couldn't go on alone. You shared in the laughter that sometimes seemed the only way to make it through the pain. This has been a horrible year: I was sick; I suffered through many surgeries and heartache; I am covered in scars; I have lost sensation in a significant part of my body and the ability to bear children; Scott and I watched our babies deal with confusion and mourning that should be way beyond their youthful years. It was rotten.

But, I am here. I am blessed and I am loved. I have three doctors appointments in the coming weeks and there is little reason not to believe that I will hear good news at all of them. (Although I think I will always find my good health to be suspicious. A 13% chance of recurrence doesn't feel so little to me.) While I remain painfully aware of what happened last February, there is a lot of good in my life, especially if I measure my life in love.

And if I look at it that way, my life is already very LONG.