lornagrl

Anniversaries.....

I almost forgot.  It was a year ago today. 

For the past year, I have noticed a lot of Google searches for breast cancer in my stats.  I can tell from the search words that these must be from  women who have found something suspicious in their breasts and are logging onto the Internet for answers.  Well, that's exactly what I did when I first found this strange, rubbery like mass that seemed to come from nowhere.  Here are a few facts about my experience:

• I checked my breasts on a regular basis.
• I had a mammogram just two years before and was given the all clear, and told to wait until my fortieth birthday to do another one.(I will be forty next week.)
• Between that mammogram and my diagnosis, I had at least two possibly three clinical breast exams.  One of them was just six months before this rubbery mass appeared.

I came upon this site which provides a laundry list so one can evaluate if a lump is cancerous or benign.  Here are some of the characteristics of a cancerous tumor:

• The lump is firm and hard. My tumor was soft and pliable.
• The lump is not discrete. My tumor could only be felt when I was lying down with my arm above my head. It was very discrete and described as such by the Dr.
• The lump is fixed in the breast; it does not move. Mine was movable.

(btw. all the characteristics of my lump appeared in the "not cancerous" list.)

This is what keeps me awake at night; I almost didn't go to the Dr. because of this.  I scheduled the appointment as an after thought and nearly blew it off. This decision could have killed me because the cancer was already in the lymph nodes at this point.

So if you have come to this site looking for answers about your breast lump, this is my advice to you.  If there is something strange or unusual going on in your breasts, run don't walk to the Dr. and demand a biopsy. Don't let any Dr., or nurse, or practitioner tell you that:

• You're too young to get breast cancer.  I saw a lot of women my age and younger in the chemo lounge for breast cancer.  Younger women get breast cancer all the time.
• It looks benign on the ultra-sound/Mammogram. A Dr. who is telling you this is lying to you.  There is only one way to tell if something is cancerous.  Biopsy.
• Let's wait and watch. Well let's just play Russian roulette shall we? 

Okay. I'm stepping off of my soap box now.

Stress I don't need before surgery...

Since 2002 I have had seven surgeries, five of them ambulatory and in five different hospitals.  One could say that I am connoisseur of New York City hospitals and their ambulatory surgical services.  So I thought I knew what to expect when I arrived at Beth Israel Hospital for my surgery yesterday.

I was told an adult would need to be there when I woke up so they could take me home, because I would be too out of it to go home myself.  I asked my good friend Ruthie if she would take me home.  She offered to come to the hospital with me but since she was coming from NJ I didn't want to impose so I told her she didn't have to.  I had to be at the hospital at 2pm, Ruthie said she would be there around 2:30 or 3:00.

I was also told to "not bring any valuables".  So I did not bring some items I carry with me almost all of the time, such as my digital camera, or my ipod (I would have liked to listen to some meditation music before the procedure, oh well) and I took off all valuable jewelry.  I did bring my wallet, which contained my drivers license, a credit card, metro card, and $5 cash.  I never leave the house without these, especially when I go into Manhattan because one never knows when the bridges and tunnels may become inaccessible and I need to stay in the city for the night.

I didn't think twice about bringing these basic items because all the other hospitals had a cubby hole/locker to keep this stuff in while I was being operated on.  I understand that this is not Fort Knox (hence don't bring ipod, jewelry, or digital camera) but basic items such as wallet and metro card would be reasonably safe. 

So here I am with a nurse before the procedure asking me the usual questions: what medications I'm allergic to? When was my last surgery? etc.  She then pointed to my bag to ask if I had any "valuables" in there to check into security.  I told her that I didn't have anything of great value but I did have my wallet, credit cards etc.  "We have nowhere for you to keep that stuff while you are in surgery."

I blinked.  "You mean you don't have a small locker?  All the other hospitals had one."

All they could offer was to check these items with security.  This involved a security guard coming over, who could only take what could fit in  2" x 8" envelope, (and here is the real clincher) they would be taking the items, OUT OF THE BUILDING.  This means that after surgery, the procedure that would leave me too doped up to know where I was going, I would have to meander through the streets of Manhattan looking for an out of the way security building to pick up my wallet and keys.  WTF?? Needles to say, this wasn't an option.

"Well we told you not to bring any valuables."

Yes, but obviously I need these items to get to the hospital.  They didn't say, "come to the hospital empty handed".  They didn't say "you should have someone with you because there is nowhere to keep your stuff while you are in surgery".  Had they told me this, I would have asked Ruthie to come the hospital with me. 

I didn't know what to do.  Ruthie was running late, and I didn't know when she was arriving. I tried calling friends but they were either not picking up the phone, or were too far away to "babysit" my stuff before Ruthie got there.

"Well you're just going to have to wait until my friend gets here so she can watch my stuff, or reschedule.  This is absurd."  And I refused to change my clothes or do any preparations until my friend arrived.  Ironically there was a whole bank of empty lockers that were not in use in the changing room, and I had a combination lock in my bag that I used for the gym that I brought "just in case" but they wouldn't let me use it.

I learned from another hospital employee that they used to offer a locker to ambulatory patients but the "discontinued this" for some reason. 

Meanwhile, Ruthie is stuck in midtown traffic, trying to get to me as quickly as possible so I can start the surgery.  Fortunately Dr. Friedman was stuck in another surgery and was running behind anyway.  So an hour before surgery I am standing in front of Beth Israel Hospital at 16th & 1st waiting for Ruthie to pull up.

This was totally unnecessary and could have been avoided if  a) they provided a small and reasonably safe place to stash my wallet and keys before a surgical procedure, not an unreasonable request at all since OTHER hospitals do this and b) they had made it absolutely clear that someone should come to the hospital with me to hold my stuff because "we ain't providing it for you".  Instead I was put in an extremely stressful situation before a surgical procedure.  Thanks Beth Israel. 

As for the surgery itself, it went rather well.  I was in some pain and kind of sick yesterday I think from the anesthesia.  Anesthesia robs me of an appetite so I don't want to eat.  But other than that, I'm fine.

Under the knife....again..

There is nothing I would rather have right now, than a cup of fresh coffee and tall glass of orange juice.  There are tears in my eyes just thinking about it. 

I am having a surgery today, part two of the tram-flap reconstruction.  I've been looking forward to this because I am really tired of the dog ears on my sides.  I had every intention of going to the gym last night, but I wouldn't  have been able to get there until about 10pm and since I had to stop eating and drinking after midnight, I thought it was best not to do strenuous exercise with only an hour window to rehydrate.  I would risk it if the surgery was scheduled this morning, but the procedure isn't scheduled until 4pm.  I'm going to be very cranky.  Between you and me, I am really looking forward to the anesthesia.  I like to pretend I'm in an opium den before I go under.

Meanwhile, my birthday is coming up and I treated myself to this...which helped me take this...

No genetic mutations...

On February 22nd I had a test done to see if I carried a brca gene mutation.  Women with such mutations are at a higher risk of developing breast and ovarian cancer, particularly at an early age.  I was hesitant to take the test for many reasons.  For one, I wasn't sure I wanted to know the answer and I was afraid if it turned out positive I would have trouble getting medical insurance coverage in the future.  But It was my fear of ovarian cancer that made me do it.  Breast cancer is survivable but ovarian, not so much. 

What I learned about the brca gene mutation is that men carry it as well which means it can pass down from either the mother's or the father's side.  The genetic counselor was especially interested in my paternal grandmother, Josephine who died of ovarian cancer.  But she was 66 years old and when the brca gene mutation is involved, the cancer usually strikes at an earlier age than that.  Still, it was a tense month because that's how long I had to wait for the results.  They made me come into the office to get it as well, they wouldn't just tell me over the phone.  This infuriated me.  It's my body and possibly my genetic mutation and I'm paying for the test.  I should have the right to receive the test results anyway I want to.  The test was NEGATIVE but had it not been I would have preferred to have been in the comfort of my own home to get the test results, not sitting in some stranger's office. 

Needless to say I'm quite relieved I did not have the mutation because it turns out that having it puts you at risk of many other cancers as well such as melanoma, stomach and pancreatic.

It still doesn't explain why I got cancer at 38 years old.

I suppose I could blame it on the chemo...

I've been pretty lucky.  I sailed thru chemo.  Aside from getting woozy for a few days after treatment and going bald, it really wasn't that bad.  Sure my toenails turned black and fell off, my bones ached a little, I sometimes get tingly in the toes and I just learned today that my ovaries are taking a nap and may never wake up. But all in all I thought it was a pretty good trade off from ....oh....let's just say it... DEATH.

Another side effect I was hoping not to experience was chemo brain.  I was proud to say that I had no sign or symptoms of this. At least not until this morning.

I was so sure that today was the New York Primaries.  I got up, dug out my new voter regisrtation card and walked toward the polling station.  I almost called my office to tell them "I'm going to be late this morning because I gotta go vote."  When I noticed there were no "vote here" signs that I began to wonder if I had the wrong day. 

Turns out the New York Primaries are February  5th.

I feel like such an air head.

Finis...

I completed my radiation treatments today.  They gave me a little diploma too, which I thought was sweet.

I have a nasty, painful burn because I was thoroughly cooked and it's going to take a few weeks before it completely heals. 

So am I cured?

The American Cancer Society considers a patient cured if they have gone five years cancer free.  In cases of breast cancer, those years start ticking the day the patient begins Tamoxifen.  So in my case I will be declared "cured" on December 17th 2013, when I will be 44 years old.

But breast cancer, unfortunately, has been known to come back decades later. I've survived, but cancer is going to be hanging over my head for the rest of my life. Every cough, every ache and pain is going to send a fleeing thought "is this the cancer coming back?"  I'm not complaining and I'm not feeling sorry for myself.  It's just a fact, and it's the card I've been dealt.

Here's to the rest of my life....
 

Burn baby burn...(three more to go)

I have four three more radiation treatments left.  Just in the nick of time too because I have a pretty nasty radiation burn.  Before treatment on Friday I saw the nurse who prescribed a tea salve and Aquaphor cream.  I don't want to get burned any further but I also don't want to stop because, well there are only three more.

Overall radiation has been a bit of a pain in the ass.  I have to go EVERY weekday, usually after work.  I spend more time getting changed and set up than then I spend getting treatment.

It goes like this:

I get to the cancer center usually around 5pm. The receptionist usually tells me to go right in.  I go to a locker room, take off my shirt and put on a robe.  Because of the burn, I haven't been wearing a bra, just a cotton t-shirt and usually something loose fitting like a hoodie.  I then wait in the "gowned waiting area".  There are usually other people waiting too but not all the time because my appointment is at the end of the day.  Some look very sick and are accompanied by family members, and others look very healthy and like myself, are probably still going to work everyday. 

A technician will call my name and tell me either room one, or room two.  I see my chart (it's a very thick chart these days) on the table with a photo of my bald self.  They ask for my birth date, then I walk into a semi dark room and lay on what must be the most uncomfortable table ever invented.

By now, I'm pretty good at getting into the right position for treatment. I worked as an artist's model for years where I would do long sustained poses and would have to get back into the exact position after a break.  I got pretty good at it. Nevertheless, the technicians still have to line me up exactly.  There are beams of light emanating from opposite walls that help them do this.  Even though I have little tatoos on my chest to help them, they still write on me with a sharpie pen. 

Once I'm lined up they leave the room and a three-foot thick door slowly closes and seals me in. There is silence, for a few minutes, then an annoying buzz.  The buzz lasts a minute maybe two.  Then the technicians come back in and set me up for the next position. 

It all takes about ten minutes. 

I was only scheduled for 25 treatments which is a low amount.  I was lucky, I had clean margins and no evidence of further spread.  Most breast cancer patients have 36 treatments.  I imagine I would have to take a break if that were the case.  This burn is pretty uncomfortable.

Vodka and Tonic

So I've completed one full week of radiation this week.  (Well actually five days of it).  I have tiny tattoos that look more like beauty marks so they can line me up properly.  The treatments take all of ten minutes and it doesn't feel like anything.  After putting me into place the technicians step out of the room, seal me in and then I hear a buzz.  There is no light, I don't feel any kind of energy, nothing. 

I think it's a trick. 

I saw my plastic surgeon last week.  There are still two more surgeries to complete the process.  Buffy and Hildegarde are history.  It's strange to think that part of my stomach is now on my chest. 

I think I'll call them Vodka and Tonic.

My mind is healing faster than my body....

"Are you kidding? I have patients who are still in bed at this stage."

This is what my plastic surgeon told me when I asked him if what I was feeling was normal.  While I am slowly improving I am still unable to stand for long periods of time and walk more than a few blocks. In the morning I feel great, but by the late afternoon my core muscles start to contract and it's very difficult to walk and stand up straight.  I end up going home and laying in bed in front of the tube.  I'm not tired, my body is.  My friends remind me that my body has been through a lot these past few months. I should try to get as much rest as possible.

"You are only one month post-op.  It takes weeks to recover from surgery like this.  Your mind is healing faster than your body."

I start radiation treatments on Monday.  I will be getting treatment every weekday for about fifteen minutes each -- for five weeks.

Then when that's finished I will just be taking a hormone every day and I can put this nightmare behind me.

As if cancer weren't enough...

Oh joy!  Oh fun!

The surgery went real well, and I'm recuperating quite nicely.  As a matter of fact, I would be capable of running on the beach right now if it wasn't for one major set back.

After I was home for the hospital about two days I became very ill.  I had intense stomach cramps, low grade fever and diarrhea.  At first the doctor thought that it was from the antibiotics and told me to stop taking them.  "It should clear up in a day or two...eat yogurt."

But it didn't clear up.  It got worse.  I spent Thanksgiving day curled up in a ball while my friends ate and begged me to try to get some food down.  Every half an hour I would get an intense stomach cramp followed by a trip to the bathroom. (and I will spare you what that involved).  The rest of the time I spent on my bed, begging God to take me home. 

It was worse than chemo-therapy.

By Sunday I'd had enough and called my plastic surgeon again.  He told me that he feared I might have C.difficile.  An infectious disease that I picked up while recovering in the hospital. The only way to diagnose this was to go to the emergency room and get a culture. 

The test came back positive. So now I'm on a round of antibiotics to kill that evil C.difficile.