Marginally Clear

Thanksgiving will hopefully be a day of thanks. It marks two weeks since the LEEP procedure. Since it falls on a holiday, my doctor’s office was kind enough to squeeze me in on Wednesday, Nov. 23. I’m sure the scheduling nurse I spoke with was aware that I’d have a Sword of Damocles hanging over my holiday table. It was kind of her to be so considerate. (Note to self: Be thankful for considerate, compassionate people).

The Healing Process

I was briefed after the surgery about care and restrictions. No worries – this is not going to get graphic. I’ll admit, it was not quite as I expected it. They likened it to a colposcopy with a biopsy. I know there is a huge difference between the two. One is a little snip and the other is more akin to taking a sizable section. Like trimming the hedges versus pruning a tree.

They under-exaggerate when they describe the more unpleasant parts of post-op care. I was in nearly constant, serious pain for the first four days. I would wake up in the morning in severe pain, because a full bladder likely pressed against the area. The more I moved, the more the pain increased.

Mothers will especially stand this next part. It is more akin to the physical sensations to about a week after labor and delivery. My bottom half was sore. It was pain like a T, across my hips through me, and into my back.

They don’t tell you the real story on a lot of it, although they are still defined within the parameters of “typical healing”. To sat the least, it was a lot more intense than I predicted.

The healing time takes longer than I predicted too. The doctors assured me that I’d be back on my feet, doing my daily activities in a few days. But, those activities are not to include any aerobic / strenuous activity. I haven’t been able to do any housework. No stairs, so I have to limit my use of them at home. It’s frustrating to leave something on a different floor.

I’m still not quite back to normal. I always feel like the doctors overreact when they give you restrictions. Possibly, it is because they know patients will not follow them to the letter. But, they weren’t kidding here. I’m moving better, but I am still in pain. I need extended time sitting. I’m tired.

The biggest thing they don’t tell you is the emotional rollercoaster that follows. I don’t know if it’s hormonal, but I have been completely out of whack. I described some of it in With This Pill. Manic Monday touched upon the subject in 2.5.

This is a conversation C.S. and I had on Friday.

I swear. A lot.

I thought I was on the cusp of a depressive episode. Mobility is difficult. It is irritating and frustrating to be at the mercy of others. I am a control freak. I like things done my way, and I like to be an active participant at all times. But right now, I feel like a useless invalid watching life pass as I’m bound immobile, as much as possible.

I feel useless. I can’t take charge of classes because I have to meet them in their classrooms. I must have children assist me in classes by passing out lyric sheets and retrieving items for me from across the room. I hate asking people for help. Then, I start to feel like an inconvenience, a burden, if you will.

Tomorrow’s Follow-up
I was under the impression that they were going to poke in there and assess my healing.  Then, they were going to report how much had to be excised, and what my chances of having more children is going to look like.  What they failed to mention is that tomorrow is also the delivery of the results from the sample they took.  What I thought was going to be a completely benign appointment turned malignant fast.

What the doctor is looking for is are Clear Margins.  Essentially, if the tissue they collected has both the cancerous cells and a margin surrounding it of healthy tissue, then we can be assured that all of the cancerous cells were excised.  However, if the margins are not clear, then cancerous cells still remain and pose a possible threat.

The course of action after that is typically to wait until the results from the follow up Pap smear come back.  If they are positive, then we visit colposcopy land to see how bad it is.  And, there is a possibility of yet another procedure.

You guessed it.  This poses a greater threat to my future pregnancies.  The more cervix that is removed, the higher the risk of miscarriage and pre-term labor.  I have a plan, but I need to get C.S. on board.  If the issue is forced, I want to make the Hail Mary pass in order to conceive another child before I would have another surgery.  We have two months to make a decision, because after that, it’s do or die.

I really do want another child, even if it’s not at a great time.  If I have to do it and take some risks, I’m willing to do that.  However, C.S. has not expressed a great deal of enthusiasm about another child.  I don’t want to come to blows over this.  But, if there is a serious disagreement, I know it’s going to turn into a serious problem.

One bridge at a time, Lulu.  One bridge at a time.

Taking the Bullet

I went to the dreaded LEEP surgery consultation, as first mentioned in Leep-Into-Cin – Part III, and more recently in  A Peach and A Catalyst.

Dodging Bullets
Honestly, I’ve been dodging this since I received word in May that my Pap came back bad again.  I put off the colposcopy until July, as I mentioned in All the Pretty Things.  The results of the colposcopy were among many things that triggered my breakdown in August, most noted in Meet Me in the Magnolia Tree.  I was informed at that point that I would need the surgery.  And I failed to go to both my August consultation and my September consultation.  I couldn’t face what I knew she was going to say to me.  I couldn’t hear that I may never be able to have more children.  And after the debacle from my last surgery, mentioned in Leep-Into-Cin – Part II, I couldn’t fathom the idea of having to go through another one.

The Reader’s Digest Version
It’s a lot of history to take in all at once.  I understand.  So, for those of you that really don’t have the time, or simply don’t want to sift through all of it, I will provide the abbreviated version.  I was diagnosed with HPV in August 2007 and had cervical dysplasia as a result.  At the time, I was in my early 20’s and the doctors all insisted that it would clear up on it’s own.  I got pregnant at the beginning of 2008 with T.D. and it only got worse.  In fact, so bad that I had to have the worst colposcopy of my life when I was 34 weeks pregnant.

Due to some insurance problems, I wasn’t able to get another colposcopy until May 2009, when it was discovered I had CIN-II and III in some places.  Essentially, I had the worst precancer before it became real cancer.  I had a very traumatic cryosurgery done in June 2009, and that was that.  For then.

Here we are, two years later.

My Worst Fears Realized / Speculated and More
From the moment I got the call, I’ve done my research.  I knew the words that were going to come out of her mouth.  And, I had face it alone.  C.S. and I decided that it would be better to save that 1/2 day off, in case I need it after the surgery.  Not that emotionally agree with the decision.  I see the logic.  But, I knew I’d need him there.  In a way, I am hurt that he doesn’t consider my health more important than his work.  I know he is only trying to make things stretch.  But, I feel like if he cared enough, he would have been there.

Like I already knew, I risk cervical stenosis, scarring of the cervix and cervical canal, that may make natural conception impossible.  I am at a higher risk for cervical incompetance, which may make carrying a child to term impossible.  I risk infection, hemmorage, etc.  But here’s what I didn’t know.  I risk damaging other organs in the vicinity, such as the vaginal walls, colon, bowel, etc.  And that made the whole ordeal so much worse.

All my doctor could say was, “The risks and complications are a possibilty.  I can tell you that these risks are small, but I can’t make any guarentees about what’s going to happen.”

On the subject of future children, “Cervical stenosis isn’t as much of a concern as cervical incompetance.  It depends on how much we have to remove.  We can only determine that when you’ve healed.  I’ll check at the 2 week follow-up and we’ll have a better idea then.”

My Aching Heart
I cannot get my mind away from the possibility that I will be incapable of having anymore children.  I wanted one, maybe two more if I feel my biological clock start to tick later on.  I cannot fathom the idea.  It breaks my heart to think about.  I may never have another child, ever again.  I could end up barren with the thoughts of the child that I could never have.  The child that would have been a sibling to T.D. and a child to C.S. and I.

Worse, is the possibilty of having multiple miscarriages.  I had one, and I know it was my fault.  I didn’t know I was pregnant until I miscarried at about 10-12 weeks.  I was drinking heavily at the time.  And that likely did it.  If that child had lived, he / she would be 9 in January.  It took me a long time to accept the truth about it.  But, I knew it wasn’t meant to be.  The day after I conceived, my boyfriend broke up with me.  I told him a year later about what happened.  His response was, “It was better this way.  I wouldn’t have left her (his girlfriend) anyway.  Now, we can all get on with our lives.”

It was cold-hearted, but he was right.  I was in no position to be a mother.  I was too young, with no college education, no income, and hardly a stable place to live.  The child would have had a deadbeat dad, and I would’ve been outcasted by my family.  This is not to mention that I was not yet diagnosed with bipolar disorder.  That baby has a better home in the life beyond.

Will I have to go through the unimaginable pain of losing a child?  Losing multiple children because my body just can’t do it?  I’m terrified at the idea.  I cry when I hear about it.  How could I even begin to handle that?

My doctor tried to be reassuring and said, “Most of my patients who have undergone one LEEP have gone on to have successful, complication free pregnancies.” Most.  Not all.  This is my second surgery.  I don’t know exactly what I will have left when all of this is said and done with.

The Worst Case Scenario of Them All
What if this LEEP doesn’t do it? What happens if the dysplasia grows back. I only have so much cervix. Do I have to face another LEEP? And if I do, that will destroy all hopes of another child. Beyond that, we’re looking at a hysterectomy. I’m too young to have my uterus removed. So what then? Hormone replacement therapy for the next 10 – 15 years? Or will I just have to bear early menopause?

That is honestly the worst of it all. Not being able to have children and having to go through menopause.

The Only Good News
The actual surgery isn’t nearly as bad as cryosurgery. I will have a cervical block, as well as IV sedation. Instead of being in the office, I will be at the hospital. The procedure is supposed to be painless, and afterward, I should sufffer no symptoms worse than a light menstration.

The after care is much like having a colposcopy, and heaven knows I’ve had enough of those.  Literally, I’ve had four or five.  With the last one, I wasn’t doing great the same day.  But, within a few days, I was back to my regular self.  I should be healed enough to resume normal activity within two weeks (like aerobic activity), with the exception that I’ll have a lifting restriction for a month.

The Plan
The date of the surgery – November 10th or 11th.  I have off on the 11th, so I tried to schedule it for then.  But, I can take the 10th off, if needed.  My doctor specializes in treatment for woman cancer.  I trust her and really like her.  She reminds me of the wonderful OB that delivered T.D., except she’s a little more forthcoming.  She’s the only doctor that has sent my specimens to an oncologist for review.  She is the only doctor that has been extremely proactive about this.  And she is the only doctor that hasn’t treated me like I’m a case, or I’m insane, or anything else.  She’s regarded me as a person every time.

I just want to get this all behind me.  I want to be able to deal with the aftermath as soon as I can.  And, I need to make the attempt to get pregnant as soon as I can afterward.  Because, if I have to face another LEEP or hysterectomy, I’ll be damned if I don’t at least try to have another baby before we come to that.

Leep-Into-Cin – Part III

Warning: The following content can be considered graphical in nature.  It may contain material that may not be appropriate for certain audiences.  Children under the age of 18, those of the male gender, and others faint of heart may want to take extra care while viewing this.  Use your own discretion.

Bringing in the Big Guns

After the experience where I was left stranded on an operating table, I had grown animosity toward that doctor that performed my surgery.  I refused to see her, and I refused to go through any more procedures.  It didn’t matter.  I had lost my insurance again and there was nothing I could possibly do.  The only other option was to return to the clinic so that they could slowly kill me with their negligence.

I did break down and go to the clinic, but only for a required Pap to receive birth control.  I took the call when it came.  ASCUS, same news, different month.  I couldn’t face it.  I didn’t want to do it all over again.  But as usual, Planned Parenthood didn’t really take this news seriously.  I didn’t plan on going back anyhow.  The nurse practitioner butchered me during that routine exam and left me bleeding for a week afterward.

Finally, I had good health insurance and went to Magee Hospital Womancare.  By chance, I was given to a doctor that specialized in woman specific cancers.  Upon our first meeting, I didn’t care for her.  She was cold, calculating, and blunt.  She reviewed my records, took a pap, and sent my samples off to an Oncologist – the first time a real cancer doctor had ever seen my file.  I was relieved, but I couldn’t stand her bedside manner.  Her words were few and her work was rough and quick.  At least it was quick.

I got the good news of my first negative pap in years!  I celebrated!  The dysplasia was gone!  I rejoiced at having that burden lifted from me.  No more would I worry about growing more cancerous cells, as day after day passed.  I could live without constant concern of death.

Until April 2011.

I had neglected to get my six month pap and was coming upon my yearly pap.  The office tried to contact me and I missed several appointments.  I was very busy now.  I had just been accepted into my first teaching job and was responsible in the spring musical as the Music Director.  The very night of the show, Womancare tracked me down.  I paced backstage and scheduled my appointment for spring break.  I realized the urgency and knew I was running out of birth control anyway.

The pap was bad.  ASCUS, again.  There was no infection or alternative explanation.  Another colposcopy had to be done to confirm all of our fears.  I scheduled it for the first week in June 2011.  I knew I would be laid off by then and would have plenty of time for recovery.  But, as you know from previous posts, I had developed the flu which turned into pneumonia.  I missed the appointment, and rescheduled for July 15, previously noted in “All the Pretty Things”.

What I didn’t mention was the nervous bus ride into the city.  Nor did I mention the walk alone through Downtown, only mitigated by my bravery to do it alone after C.S. once again failed to attend at the last minute and serenity found at the fountain.  I laid on the table in the familiar position – feet in stirrups, staring at the ceiling.  I felt the vinegar sting the tissue inside of me.  I sighed.  Then, there was a feeling of a stab, twice that of a shot, and enough for me to lose my breath.  I heard the doctor say, “That’s not enough of a sample.” and then came another unbelievable stab that had me seeing stars.  I cried out in pain.  Just keep breathing, keep breathing.  The tears flooded to my eyes and another slice that felt like a twisting knife in my insides.  Breathe.  Keep breathing.  I told myself over and over, but I was choked with tears from the incredible amount of pain.

The doctor was uncharacteristically sympathetic.  She asked me questions, but I could not speak.  I could not catch my breath to tell her that I just needed a moment.  She offered me a cool towel and I declined.  She offered me a cool drink and I accepted.  I tried to get up, but she insisted that I lie back down for awhile.  I needed time for the apoxy to take hold to cover the internal wound.  I needed time for the cramping to go away before I should move.  She knew more than anyone else in my life that all I needed was some time.  I sipped the water, caught my air, and said to her, “I don’t remember it being quite that painful.  Then again, I don’t remember it being quite that fast either!”  I was trying to save face, but it didn’t matter.  She had seen the twisted look on my face with my eyes squeezed shut.  She asked about my condition and I told her I was OK and that I still needed to catch my breath.

I was still choking back tears.  I was ashamed that I couldn’t handle the pain and cried.  I was so alone.  I was furious that C.S. had not made more of an attempt to be with me.  But more than anything, I was sad that I had been let down again.  And I knew I would have to drag all of that physical and emotional pain down the streets of Pittsburgh, back home with me, and into my home to face my son alone.

All alone.

The Anticipated Call

The office assured me that we would have a result by Friday.  I knew what they were going to say.  I had hoped that they would say that it was CIN I, and we could wait.  But I knew it wasn’t.  Just like I knew in the beginning that I would be in the 10% where this doesn’t resolve on it’s own.  Just like I knew after the cryosurgery that this wasn’t the end of it.  I wanted to believe differently, but in my bones, I knew better.

Friday morning, I took the call.  I was in my mother’s kitchen while T.D. was downstairs watching Spongebob for the gazillionth time.  CIN II.  This time they wanted to perform LEEP because of my advancing age, history with this disease, and my current grade of dysplasia.  Seemingly, it was progressing faster this time.  Or else, the cryosurgery just didn’t take.  I knew all of these things, because I often have the power of foresight.  At least when it comes to my body and my mind.  But, there is nothing that can actually prepare you for the news.  There is also nothing that can prepare you for what you are facing.

The nurse I spoke to wanted to schedule a surgical consult before we proceed.  I was puzzled and felt some looming threat.  I had never been offered a surgical consult before.  Apparently, the doctor and I have a lot to converse about.  In the meantime, I am left my with racing thoughts and full internet access.

A Rock and a Hard Place

Each surgery presents the problem with damaging the cervix with scar tissue.  If enough is amassed, that may pose problems for future fertility.  The statistics say that cervical stenosis, the narrowing of the cervical canal, is about a chance of 1-2%.  But the statistics are a little more unclear when it comes to cervical competency to bring a fetus to full term.  The more they take of the cervix to remove affected cells, the thinner the cervix becomes, which destroys its integrity.  In summation: If I have this procedure, can I have the second child that I’ve been trying to plan for?

But what are the chances if I wait to have the procedure until after my second child is born?  Will I develop invasive cancer in the meantime?  Will they have to take my uterus if I decide to wait?  What is the risk?

It would break my heart to lose the second child I so desperately want.  But it would destroy my body if I were to have a hysterectomy, or worse, to face death due to cancer.

Another waiting game lies ahead.  I do not have my consult until August so I cannot have any of my questions definitiely answered until then.

The sword of Damocles hangs over my head.

All because of two complete assholes that I trusted and loved.

To be continued . . .