Hellooooo Taxol! What treats do you have in store for me?

Happy Holidays! 

Due to popular request (and in recognition of my tardiness), I am quickly updating this blog on Christmas Eve Eve to let everyone know I'm doing fine.

Here's the latest:

When last you heard from me, I was gearing up for my first chemo treatment with Taxol.  I will have a total of 4 treatments, one every 2 weeks for 8 weeks. 

I arrived last Thursday morning promptly at 9 am.  I saw my beloved nurse, Sheryl, and her sidekick, Dr. Wasserheit.  They congratulated me on finishing with the Red Devil and being half-way done.  I'm thinking, "Yeah, yeah, let's save the congratulations for the end. Let's get this over with" so admittedly I wasn't paying full attention when my sweeties were going through the new side effects to be expected from Taxol.  Something about joint pain, taking tylenol, numbness in my fingers, eyebrow and eyelash loss (which is already happening). Most of what I heard was "It won't be nearly as bad as the Red Devil".  My white blood cell count was sky-high so they decided I should not have the neulasta shot.  Ok, so I bebopped up to the chemo suite all ready to go.  I even sent David off to do Christmas shopping instead of wasting time sitting around with me watching chemicals drip into my body.

BTW, chemo "suite" is a very generous term.  It's basically a large room with recliners (but not really the cozy Laz-E-Boy kind, more the hospital "let's pretend this is a recliner" kind).  Each recliner has a chair next to it for the visitors (no need to give the visitors recliners - they don't need to be comfortable).  There's a fridge (big sign "For Drinks Only, No Food") and a basket of snacks on top (another sign "Please take only one per patient"). Then, each recliner has a TV near it which annoyingly only shows Memorial Sloan Kettering advertisements and/or shows.  A patient once turned it on and the whole thing was about cancer patients telling their stories:  "8 years ago I felt a lump and went to a doctor.  He kept telling me it was nothing. 3 years later I finally went to Memorial Sloan Kettering and they determined it was a tumor..."  Basically the underlying (not so subtle) concept is that Sloan Kettering is the best and you should be suspicious of everyone else. 

Oh, I should mention the Sloan Kettering pets.  Some of the waiting rooms have huge fish tanks filled with gorgeous, unusual fish.  My favorite is a big, yellow, chubby one that has one snaggle tooth hanging out - no other teeth to speak of.  He always looks cranky - like he wishes he were in a more prestigious tank somewhere - Mystic Aquarium, maybe?

Ok, back to the story - I bebop up to the chemo suite.

DID SOMEONE, ANYONE, MENTION THAT IT WOULD TAKE 6 HOURS FOR MY TAXOL TREATMENT??!?  No. No, they did not.

First I had to have the benadryl drip.  Then another steriod drip.  Those, combined with the 5 steroid pills I had to take the night before and that morning finally prepared me.  It was time for the Taxol. 

Now apparently Taxol can cause a severe allergic reaction in some people to the point where they can't breathe.  So the nurse explained that she had to watch me for the first 15 minutes and if I felt ANYTHING, no matter how small, I should tell her.  I told her I'd play my online sudoku game b/c if I didn't, I would definitely feel something.  You always feel weird things if you pay attention to your body - try it.  Suddenly that little jabbing pain on your shoulderblade seems suspicous. So I played my game and she kept asking me how I was doing and if I felt anything.  I never did.  Finally the 15 minutes were up and she moved on to someone else. 

Well, I was up there quite a while.  David got tons of our shopping done.  But before we knew it, the kids were going to be coming home from school and I wasn't nearly finished.  David rushed home to get them and then they all had to come back to get me.  I arrived home around 3:30.  More than 6 hours later!  Sheesh! 

I felt great the next day.  Well, not great for normal people, but great for a cancer patient.  No comparison to the Red Devil.  Saturday was great, too.  Then Sunday, DURING THE STEELERS GAME of all things, I started to get very bad muscle and joint pains.  Stabbing pains that made me writhe on the couch.  I couldn't even focus on the game!  Horrible!  I took tylenol and advil, remembering that my sweeties had told me I could alternate.  I thought for sure there must be something severly wrong.  I could barely move.  This must be how arthritis feels!

Quick research on the internet revealed that this is a very common side effect of Taxol.  93% of people experience it.  Monday I called my doctor and she said it happened right on schedule - 72 hours after treatment.  It usually lasts 5 days. 

So, today is the 5th day and I'm feeling almost back to normal.  Cancer-normal, that is.  Just in time for Christmas.

Merry Christmas to All! 

Birthday in Bed...But I'm Feeling Groovy

Tuesday (Pearl Harbor Day) was my birthday.  Except for sending a few work emails, I spent almost the whole day in bed. I just couldn't get the energy to move. I didn't even rest, I SLEPT!  Around 4 pm I rallied and was able to have a small celebration with my boys.

Thanks to all of you for the birthday calls, texts, emails and other messages!  It made me feel special on an otherwise very uneventful day.

Wednesday I went to work but still felt nauseous and exhausted.

Today I woke up and rushed off to the train for work. Usually its swaying starts the nausea for the day but today I arrived with a spring in my step and a smile on my face.  I realized that I feel GOOD!  Well, not "normal" good, but pretty darn good for post-chemo.  I was quite chipper at work and tonight at home.

I'm so happy - I hope this lasts!!!

I will never take feeling healthy and happy for granted again. It's amazing how feeling good changes your outlook and attitude.

Last Dance with the Red Devil

It's chemo eve.  Tomorrow I dance my last dance with the Red Devil. I'm dreading it but am also eager to get it over with. Onward and upward to Taxol!  New side effects to look forward to!

For those who have never heard of the Red Devil (and lucky you are), it's the breast cancer patients' affectionate term for adriamycin. Its side effects include nausea, vomiting and life-threatening heart damage.  Well, that all sounds familiar, doesn't it?

The Red Devil got its name because it's red in color and needs to be administered by a nurse "by hand" a small bit at a time.  I get 5 huge syringes full during each session and it takes about 45 minutes to administer the whole dose.  It makes us patients feel terrible, hence the devil reference.

Well, tomorrow is that last time I have to deal with the Red Devil.  Coming up are 4 more chemo sessions with a different drug, Taxol.  My oncologist will tell me all about the new side effects tomorrow.  I know one of them is the loss of eyebrows and eyelashes and numbness in my fingers.  That should make typing at work interesting. 

I'm feeling good - physically and emotionally.  I'm almost chipper!  But you know that won't last and you'll have to be read a bunch of cranky, complaining posts.  My last chemo session was brutal.  I felt sick for over a week, and didn't really get off the couch until Saturday AFTER Thanksgiving.

We shall see how this last Red Devil session goes.  Hans (my brother) and his wife, Joanne, are here to help so that will be a nice highlight.

As a side note, I love my oncologist, Dr. Mary Wasserheit and especially her nurse, Sheryl!  They always make me feel like I'm their only patient and they've been eagerly waiting two whole weeks for me to come back!  Once again I can't say enough good things about Sloan Kettering and its staff - they are the absolute best!

Next time you get cancer, consider paying them a visit.

Round 3 progresses

Not much to report except that I feel bad, as expected. Nauseous and tired and grumpy. Yelling at the poor kids too much. Terrible! 

I had a nice visit with Jex (my sis)!  We had a lot of fun together - that was the highlight!

Looking forward to Thursday when I should finally feel better.  I know tomorrow will be the worst so I just need to get through it.

A little bit of bronchitis never hurt anyone

Last night I woke up coughing, coughing. This morning my chest hurt and I kept coughing. "Out of an abundance of caution" (as we lawyers like to say) I stayed home and called my oncologist. Normally I ignore signs of sickness until I'm on my death bed but I'm learning the lessons of this dance with cancer. I don't want to take any chances and it's always better to deal with things before they get too bad.

My oncologist ordered a chest x-ray. Turns out I now have bronchitis. She gave me antibiotics and sent me on my way until Thursday.  That's the day of my round 3. If I don't feel better by tomorrow (she gave me some strong stuff), I'm supposed to come back.

Looking forward to having my sis Jexy-Wex with me during this next round!!

The Hair Saga Continues...

First of all, I feel much better. On Thursday I realized I had gone the whole day without feeling nauseous. I'm still tired all the time but that's not too bad. It could be worse, as we all know.

Meanwhile there have been a great deal of hair developments. Mom left on Monday and wanted to take some of my hair with her. She's going to try to get it on a hat or something so I have some of my real hair to wear once in a while. If she can pull it off, she might as well go into wig-making. I don't know what's she's going to try, exactly, but she's a crafty lady so I'm quite intrigued.

I managed to rally myself from the bed long enough for her and David to shave my head. At first I cried a few tears but very soon it became apparent that I looked like Demi Moore in GI Jane (maybe not quite so pretty). Which made me remember that our military folks go through this a lot, too. It's really no big deal. Plus David and Mom managed to convince me that I have a "cute" head. It's just that no one knew until now because I have/had so much hair.

So then I tried on the wig. It looked horrible!  Hair sticking straight out and no matter what we did, we couldn't get it to lie flat!  David rushed out of the room so he wouldn't show how horrified he was - I knew right away that's what he was doing.  Mom and I kept trying - "it looked so good at the hairdresser's..."  FINALLY I realized that I had put it on upside down!  Sheesh, what a goofball!  I put it on correctly and VOILA!  Gorgeous!

So the new profile picture shows me with the wig on the right way (but with no makeup and feeling about to throw up).  It also shows David wearing a hat with some hair attached that I also received from a friend.  It's good for when you're rushing out to the grocery.  Doesn't he look cute?  That and the black eye (from an incident at his ultimate frisbee game) make him look like a perfect candidate for an episode of Ice Road Truckers.  I'm just saying.

On Tuesday I got ready for work. We were rushing around as usual and I put the wig on right before we headed out.  I asked Max and Leo, "How do I look?"  Max: "WEELLL, just a little bit ugly."  Me: "What?  That's not too nice to say."  Leo: "Well, Mom, just a teensy, weensy bit ugly." I couldn't help but feel a bit self-conscious after that but I chalk their comments up to the fact that they're just 8 and 6. I do look a lot different with the wig.

So I went to work and the wig received many compliments. Some people thought I had just changed my hairstyle.  But the wig itched.  Wednesday it itched more.  I couldn't wait to get home to take it off.  I have about .5 inches of stubble all over my head and I think that's what causes the itching.  I kept scratching and then had a brilliant idea - TAPE!!!!  I wrapped some around my hand and started patting my head - plenty of hair came off and it felt so good!  Guess who got involved?  The boys!  Next thing I know my head is covered with pieces of packing tape (nice and sticky) and Max and Leo are pulling, pulling hair out.  It felt fabulous.  When it was time to go to bed, Leo begged David to "leave some for me for tomorrow"! I still have a lot of stubble and debating another tape party for tomorrow night.

Who knew the side effects of cancer could be so fun???

The Last Bastion of Normalcy has succumbed...

Well, my hair has given up its fight. It is falling out in clumps. Today is the day that it will get shaved off, if I can get out of bed. My hair and I just can't get the energy up to fight the chemo drugs any more.

I'm actually kind of looking forward to shaving it because my scalp hurts. 

They said the chemo effects are cumulative and they are right. It is much harder this time. I can't imagine how much worse it will get during the next treatments. The exhaustion is overwhelming. All I can do is lie around in a big pile of misery. I don't really even sleep much because the drugs prevent good rest.

And I hate the dumb port because 1) I hate all creepy medical things; 2) it itches like crazy (I guess b/c it's healing?); and 3) I can feel it when I lie on my side in bed and it feels like I have a piece of uncomfortable metal sticking me in the chest.

I am cranky and can't think of anything fun or good to look forward to.

I'm sure I will start to feel better in a few days and this will pass but it's a tough cycle to go through every two weeks.

Sheesh, I am a giant crankball, aren't I?  I bet my poor coworkers dread my return.  I was a nightmare of discontent last week...

Chemo Round 2

Well, I'm dealing with the side effects of Round 2.  This time is harder than last.  I'm more tired and nauseous and all the other stuff. 

I thought I could get a bunch of work done yesterday (the day that I'm supposed to feel the best) but there was no way. The steroids make my head feel hot and feverish and thinking didn't seem like a worthwhile effort.

My hair is hanging in there. David compared me to Samson - my hair is my strength.  Hee, hee.  It, at least, is refusing to be affected by chemo.  Actually today there seem to be more strands that come out when I pull but that could also be because I haven't showered since the port was put in (not allowed).

Today I go to the hair dresser to have my wig styled for me. Should be fun.  Many thanks to Wendy for giving me her gorgeous wig!  I will have somewhat redder hair that's STRAIGHT for the next few months. I've always wanted straight hair that looks perfect at all times - total bonus of wearing a wig!

My anger has subsided. I think it's because I'm too tired to be mad.  It takes energy to be angry. Maybe it will come back when I'm feeling better.

The Port is In

Well, I had the surgery yesterday to have the port inserted.  All went well and it's in but I have a bunch of bandages and it hurts.  I'm not happy about that.  I'm annoyed with being in pain all the time.  It is making me very crabby.

Today is the second round of chemo. Mom is coming with me. I'm curious to see how it all goes with this sore port! 

Also, I'm expecting to lose my hair tonight or tomorrow.  A friend told me that she started losing hers the night of her second treatment. So far my hair seems to be its normal self, though. Not much action up there.  I have a wig ready to go. As soon as I lose large amounts of hair David and I are going to shave the rest off.  I'm kind of looking forward to having my hair look perfect for once. That's the silver lining about wearing a wig!

I'm still mad about having cancer!  I hate everyone and everything (except all of you!) and I'm very annoyed. I will get over it.  There are probably some "stages" of having cancer (as there are stages of grief) and I'm sure anger is one of them. So I'm in that stage right now.  I guess I'd say my stages so far have been: shock, acceptance, anger.  Wonder what's left and what's next?

And no, I haven't read any cancer books, or books about how to deal/live with cancer, or tips on surviving breast cancer.  Having it is bad enough, I just don't want to read about it, too.

Thanks to all for the gifts, cards, candies/chocolates, food, flowers, etc.  One of these days I will get around to writing thank you cards!  Meanwhile please know that I am so thankful to have such great friends and family who care about me so much. That's one of the main things that's helping me along...

Feeling Better and Pissed Off!

Ok, so I feel better.  Not normal, but able to function.

And I'm pissed off!  Why is this happening to me?  I didn't do anything wrong! I've tried to live my life as a good person!  I'm really mad this is what I have to go through! I know others have it worse - but so many people don't have cancer and don't have to go through chemo and surgery, etc. - so why me??? 

I'm really mad now that I've had some time to think about it all.  I don't deserve this!!!

Oh woe is me!

Ignore previous post.

I feel horrible.  We will all be lucky if I don't throw up all over the house.

I hope tomorrow is better.

This is not easy.

Chemotherapy is kicking my butt! Or am I kicking its?

Hm, it depends:

Chemotherapy's points:  Well, I don't feel good. My face is bright red (from the anti-nausea medicine) and I basically feel like I have the flu. I feel like I have a high fever (very hot head) but I don't at all. I have a headache and I'm completely constipated (sorry if too much info). I sometimes get nauseous but if I eat something, it goes away. I'm tired.

Heidi 's points: I can get out of bed. I'm not vomiting constantly. I'm not moving quickly but I'm getting around. I can do laundry. I'm not sleeping all day long. I will try to go watch Leo's soccer game and the Steelers are on TV here in NY!

I think a big important point is that they have made amazing strides with drugs recently. I'm taking something called "Emend" which has only been out about 5 years. It's being hailed as the miracle drug and I guess I have to agree. This experience has not been as bad as I feared it would be based on what I read other people went through in older books.

That doesn't mean I feel great and that this isn't hard. I'm really worried about tomorrow (Monday - when I might try going to work) because I'm not scheduled to take the anti-nausea drug. But hopefully that means I won't need it and I'll be ok.

And let's face it, I would be in much worse pain if I had been in some kind of accident. I don't really have pain per se - just feeling generally crappy.  I would sum it up by saying I feel like I have the flu.

So am I winning or is the chemo?  Maybe I'm winning this round at least?

Do you have good veins?

I have been asked this many times in the past week. It's quite a puzzling question and the more you think about it, the stranger it becomes:

How do I know if my veins are good?
What distinguishes a good vein from a bad vein?
Could just an average vein do the job?
What if you don't have a good vein?
WHY IS THIS IMPORTANT???

Well, no one has ever told me I have bad veins and I've never had trouble with IVs and having blood drawn so I decided I have good veins. So that's what I reported, "I have pretty good veins."

I was wrong.

Here's how my first chemotherapy session went:

Obviously the nurses need a good vein (i.e., a vein that doesn't collapse) to put the IV in. But it's so much more complicated than that - because of course this is Heidi going through the medical system so of course it can't be smooth sailing. I'm always causing problems somehow, for example, by lying about the status of my veins.

For one of the drugs I'm getting in Part I of chemo (Drug A), it's very important that it not get out of the vein into the surrounding tissue because it can cause permanent tissue damage. I didn't ask for further details b/c I kinda don't want to know. So, Drug A must be administered by the nurse through the IV a bit at a time, not through a drip bag. If the vein collapses, sneaky Drug A will escape and the nurse must stop administering Drug A immediately (so its little friends can't help do larger tissue damage).

Now, the IV can only go in the lower part of the arm - not above the elbow (I forget why). It shouldn't go in the main vein in the arm by the elbow because they want more "meat" around the vein. And because I had lymph nodes removed on the left side, I can never have a needle inserted in that arm again (for fear of developing lymphedema). So we were limited to the lower part of my right arm.

The veins were not showing themselves - apparently my nervousness was rubbing off on them (this is truly what the nurse said). She told me to relax - AH HA HA HA! Funniest thing I had heard since yesterday when my Junior Editor decided to switch to IP/IT instead of employee benefits. You actually think intellectual property and technology will be more exciting than benefits? Ah ha ha ha. Oh darn, you're right. Ok, back to the story.

Also, the room was cold so that made the veins shrink up, too. The nurse put heat packs on my arm and I had to open and close my fist to help coax them out. Finally one of them seemed ready but after a bunch of painful poking she declared that it wasn't good enough for the job. Now she had to find one that was higher than the insertion site and still below the elbow. But none of the other veins were willing to step up and do the right thing. CURSE YOU BAD VEINS!

So what to do? I was freaking out thinking they would send me home to try some other day and I was already emotionally invested in getting the first chemo treatment over with today. A delay would mean more and more anxiety buildup and I didn't think I could handle that. I ironically go from not wanting to have chemo to wanting to have it RIGHT NOW!

It was somewhat of a conundrum. The answer was to pull in the big gun: the nurse with more than 21 years experience. She rubbed my arm and investigated the veins carefully and eventually agreed that none of them was ready. The only possibility was the main vein in the crux of my elbow; the one that has always been used before but was initially rejected for this project due to lack of surrounding "meat" (nurse's term, not mine). Due to her experience it all worked perfectly and we were back on track.

To prevent this from happening during the next 7 treatments, the nurses suggested I get a "port" which is an IV line permanently hooked up under my skin. It requires minor surgery (which I am always against as it involves needles and other nameless, scary-looking medical equipment) for insertion and removal. However, there was another woman who had the same lumpectomy/lymph node removal/chemo treatment in the chemo suite and she had a port. And she was much younger than me. She told me the surgery was no big deal and it was totally worth it. So I think I will actually go for it.

To sum up the lesson from today's events, I urge you all to go figure out whether you have good or bad veins! Just try not to go the chemotherapy route when doing your research.

As to how I'm feeling, so far so good. I'm very tired and have been getting nauseous off and on but it seems to be relieved by eating something. Meanwhile it's only been about 6 hours so we shall see what the days ahead hold for me.

Chemotherapy Update

We visited the oncologist Friday at 10:30. Well, little did we know the appointment would last THREE HOURS!  We were bombarded with information and were so hungry by the end that we could barely pay attention.

Anyway, chemo starts on Thursday. I need to go back on Friday to get a shot to boost my white blood cells. Thereafter, I will have 7 more treatments, one every two weeks. So a total of 16 weeks of treatment.

The first 4 will involve two drugs and will cause me to lose my hair, etc. They could also cause permanent damage to my heart. There's so much more to it - I left with 6 prescriptions that must be filled before Thursday. I'll need to give myself the shot the day after to boost the white blood cells - I will get "trained" for that on Friday. Also, I need to have an echocardiogram to make sure my heart is health enough to handle the particular drug cocktail.

Part 2 involves 4 treatments of a different drug. It luckily does not have as many side-effects. The only really bad thing is that some people are allergic to it to the extent that they can't breathe and treatment must immediately cease. It may also cause me to lose my eyelashes and eyebrows.

Well, there's plenty more interesting news where that came from. Suffice it to say that I will be a walking pharmacy for quite a while!  I'm trying to digest everything but it's definitely depressing. I have so much more ahead of me. The worst is not over.

Gearing Up for Chemotherapy

Today I have my appointment with the oncologist. Hopefully I'll have a better idea of what my schedule (and life in general) will be like for the next five months. I'm looking forward to it.

Meanwhile, I've done what I can to prepare. I visited the dentist and had all dental work completed. I visited the eye doctor, found out my eyes have not changed much and ordered new glasses. I got a flu shot.

So I guess I'm ready.

I will post later today with news from the appointment.

The Drain is Out!

I am so happy!

Friday I called asking for an appointment the following week to have the drain taken out. They told me if I could get to the office by 4 pm that day, they could do it. It was a horribly rainy and cold day.  It was either stay home nice and dry and suffer through a whole weekend with the drain or venture out into the unpleasant weather. So I rushed to the train and arrived by 2:15.

The nurse told me removing the drain wouldn't hurt and it didn't!  I can't believe it! Here I was so worried and even wasted a valium...

My surgeon was also there and wanted to see the scar. She said she's only done that particular type of incision 15 other times and she was interested to see how it looked.  She was quite pleased with herself!  She got the large tumor, the small benign one and 17 lymph nodes all with just one incision. I will have scarring which you'll be able to see if I wear a tank top but that's no big deal. She's such a nice lady and I also think she did a great job. Her name is Dr. Mary Gemignani - if you ever have need of her services (and I sincerely hope you never will).

I also found out that I saw her and the anesthesiologist before surgery in the OR and was actually talking to them! I have no memory of that.  She said they gave me a mild sedative but most people still remember that type of thing - I don't. Also, she clarified that instead of telling me to count backwards from 100 or saying "Let's get started", they just said, "Heidi, we'll take good care of you."  I said "Ok" and then I was out. Well, I'm kind of glad I don't remember as much as I could. It's not the kind of thing I care to remember. But it's nice to know that the surgery didn't happen as suddenly as it seemed without any formality.

Bummer!

I had the appointment today. Everything is going well. We got details on the pathology report. They removed 17 lymph nodes, only 2 of which had cancer (which means it probably hasn't spread far). The margins the surgeon removed around the tumor were clear which means they got all of the cancer out.  Next it's on to chemotherapy!  I have an appointment with an oncologist on October 15th.

The huge bummer is that they refused to remove the drain!  Aaak!  The drain wins round 2 after all!!!  There's still too much fluid leaking out. Apparently I have been too active and not resting enough. I have been doing the exercises they recommended and have almost full range of motion of my arm back. So I've been doing my normal things - loading dishwasher, etc.  I could even shave under my arm if I had an electric razor! They were pleased with the range of motion but the drain must stay in.  Once the fluid reduces to 30 ml per day, I need to call them and make an appointment to come back in to the city to have it removed. That will probably be next week!  So totally inconvenient and depressing. Even with all of the other good news I can't help but be down.

For my coworkers, the surgeon wants me to stay out through next week. After that she said it's up to the oncologist to clear me for work. But since I won't see the oncologist til 10/15, I think I will just plan to be in the office starting 10/11, unless someone tells me otherwise.

Appointment Change

Hi everyone, my post-operation appointment with the surgeon has been rescheduled to tomorrow (Tuesday, 9/28) at 10:30 am. I will hear all about the pathology report, start coordinating with an oncologist and find out what's going on with chemo.

I will post an update tomorrow night to let you know about the nuggets of info I've collected.

The best news is that the drain will come out!!!  Ha, ha, it tried really hard to freak me out but I won in the end. Tonight my mom and I are laughing about the most recent grossness it dished out (aka, the drain's "last hurrah") and I am NOT freaked out. So there, you dumb drain!

1 Week Anniversay

It's been a week since the surgery and I'm doing MUCH better. The pain is now localized to just the left side of my chest and left arm and it's not intolerable. I've downgraded to Tylenol so that's a good sign!

An even bigger development is the fact that I finally looked at the "site". Very interesting experience. I didn't actually mean to but I caught a glimpse in the mirror after a shower and I just looked. It's not as gross and hideous as I imagined so I'm glad I did it.

Yes, there are some nasty, spider-web looking sutures. I wonder why they feel they need to use BLACK thread (or whatever it is)? Maybe to be able to see what they've done? I must say the sewing looks pretty professional and straight, though. I know I have a good surgeon.

Then there's the cavern going through the left side of my breast. Also kind of creepy looking but it is what it is. You don't have a tumor and lymph nodes removed without have some kind of hole to show for it. Supposedly it will "fill out" a bit but if I want it to look natural, I need reconstruction. Ha, do they really think I will put myself through this again voluntarily? Not a chance. I will stuff my bra with cotton balls the rest of my life to avoid going through another surgery!

Not to be neglected is the drain hanging out of the site. Yes, a big plastic tube with a bulb at the end constantly filling with gross things that I won't describe. I have heard that is hurts when they take the drain out, similar to when a band aid gets ripped off. I'm considering using my last valium for the procedure, just in case.

Rounding out the scenery is the fact that I haven't shaved under my arm for over a week. I don't think that's happened since I was 12. I'm curious to see how it looks in another week. I'm not allowed to use a regular razor anymore because of the chance of nicks and infection. So I need to buy an electric razor but first I need to be able to lift my arm!

All in all, things are much better. In another week the drain will be removed and hopefully I'll be feeling almost back to normal. Just in time to start chemotherapy!

Ow Ow Ow.

Pain, pain, pain.

Crying, crying, crying.

Everything has been downhill since Friday. I think the euphoria of having the surgery behind me kept me floating on a bubble for a while. Then the rest of the anesthesia wore off in the middle of night and I felt horrible on Saturday. I'm feeling a tiny bit better every day but not as great as on Friday. Every morning I feel like I've been in a traffic accident.

Yesterday I took my first shower. That was traumatic. I know I have a big crater in my left breast where the tumor was and all kinds of sutures under my arm. But I have refused to look. David and Mom have been changing my bandages. So I was bawling in the shower, not wanting to touch anything. David told me I could probably just let water drip on the wounds and that would be good enough. So that's what I did. If that was wrong, don't tell me.

I know I should be thankful because it all could've been so much worse. I could've needed a mastectomy, or two, and what I'm going through is nothing compared to what others have to survive. But it's still hard not to feel horrible and depressed and generally very sorry for myself.

Surgery Recap - Drugs Are Our Friends!

Hi guys, it's Heidi. I'm up and feeling reasonably well. I don't think the anesthesia has totally worn off yet and so I'm expecting pain to get worse before better.  Thought I'd update the blog before that happens.

Well, here's the whole story for those who are interested.

We arrived promptly at 8:30 and I barely had time to take my valium before being whisked off to a private preparation room. I must say Sloan Kettering has gorgeous facilities. You never really see another patient. I had the IV inserted, put my clothes into a garment bag and then David and Mom were allowed to come in.

THEN, the part I had been dreading: inserting the wire. We walked to the mammogram facilities and they told me they'd be using an ultrasound to insert the wire directly into the tumor. HUH?  That's not what I was told. The surgeon told me she wanted a wire pointing to the titanium chip they left in me where the benign tumor was. I told them that. "Well, we always insert a wire into the tumor so that must be what she meant." Hm. Well, here's the lesson folks:  Always be your own health care advocate and pay attention to who tells you what.  But what am I going to do, argue and not let them do it?

So I have the ultrasound and they use my buddy litocane as the anesthetic. I told them I had a bad reaction the last 3 times it was used on me and they said based on the symptoms (sharp stabbing needles being jabbed into me for 20 or more minutes) it does not sound like an allergy. Just "sensitive" nerves (aren't nerves supposed to be sensitive??). Besides, they have nothing else to use. So it looks like what I was dreading the most was happening. But, maybe the valium made my nerves less sensitive. In any event it was not unbearably painful. Next I need a mammogram showing the wire from several angles to guide the surgeon directly to the tumor.

The procedure is done and they bring me back to Mom and David. Next thing I know, they call me in again. They had spoken to my surgeon AND I WAS RIGHT! She did want a wire to the titanium chip. HA! I knew what I was saying after all. I'm feeling quite self-righteous until they tell me that the 2nd wire must be inserted via a mammogram b/c the chip is too small to be seen via ultrasound.

MAN ALERT: Don't read unless you want to read about smashed boobs.  So they smash me in the mammogram machine (with the other wire blowing around in the breeze), give me more litocane, and start sticking the needle/wire in. This one was more painful and I could feel the whole thing being inserted. So gross! Naturally they have to take pictures from all angles, so there is more smashing and now two wires blowing in the breeze.  Finally I get all wrapped up and am released. I'm hoping it's all downhill from here.

MAN ALERT OVER. We get to go back to  nice private room with 1.5 hours to go til surgery. I forgot how much fun "Price is Right" is to watch!  Drew Carey does a good job although he's not Bob Barker and he probably hasn't donated a used ship to a bunch of incompetent whale protectors trying to prevent whaling in the Artic Ocean (see Whale Wars on Animal Planet). Just FYI, I'm anti-whaling but the Sea Shepherds have done almost nothing to stop it. They look good in all of their matching gear, though. But I digress.

I finally get rolled to surgery where they tuck me into a nice, heated operating bed. They put a "boot" on my left leg that gently massages it to keep blood flowing during surgery. This is all quite cozy! All the people in the OR are friendly women. Next they put a "boot" on the other leg except this one is to take my blood pressure. It becomes VERY tight and I ask if anyone has every had their leg explode because of it. They say, "Not that we're aware of". I guess they don't know my sense of humor.

I never even noticed the anesthesiologist come in. No one said, "Ok, let's get started." The next thing I know, someone asks me my level of pain. What? I haven't even been awake so I just say 5. She pops a pill in my mouth and I go back to sleep. Later she asks me again what my level of pain is. I say 4 (making it up). Then she asks if my family can come in. I ask what time it is, how long the surgery was, how long I've been asleep. It's been 5 hours!  Poor Mom and David have been waiting this whole time instead of the 1.5 hours we were initially promised.

So, they arrive and we get the instructions for cleaning drains, doing arm exercises, none of which I pay attention to until they get to the drugs. I get to take percocet every 4 hours as long as I need it or until the 30 pills run out! And then we get the hell out of there!

So that was my surgery experience. Moral of the story, know what procedures you're supposed to have and by all means, TAKE WHATEVER DRUGS YOU CAN GET!

surgery update

Hi, this is David.  I want everyone to know Heidi is fine.

Heidi was very brave and in reasonably good spirits before it all.  I'm very proud of her.

Afterwords, the surgeon told us everything went very well.  We're at home now and Heidi wants to watch the season finale of "Top Chef".  Thank god for Percoset!

I'll let her fill you in on any further details.

Thanks everyone for all of your support, I know it means a lot to her!

David

Surgery Tomorrow!

Yahoo!  The day is almost here!  Ok, obvious sarcasm but I am a bit looking forward to getting phase 1 of the breast cancer battle over.  Clearly I will win.

 Everyone has been asking:  The needle localization is at 10 am.  This is where they insert a thin wire which will point to exactly where the small, benign tumor was. The surgeon wants to remove some of the surrounding tissue. Since it's so incredibly small, she needs a wire to follow to find it. The wire will be inserted during a mammogram. Sounds like fun, doesn't it?  I'm relying on one of my 3 prescribed valium pills to get me through this.

The actual lumpectomy is at noon.  With nothing else, it would last a mere 20 minutes. But they are also removing lymph nodes so that will take up another 25 minutes or so. The whole procedure should last about an hour. I will be under anesthesia so I don't need to use up one of my precious valium pills for this one.

David is going to try to post to the blog from the hospital with updates.  However, if you should happen to read some weird, crazy entries, they've probably been posted by me under the influence of heavy narcotics. Just ignore. If the emails make sense, they are from David.

Ok, I'm getting ready to try to relax with my family. I will use one of the valiums tonight to sleep. That leaves one left over for emergencies, like if I have to wait too long for surgery and I start to feel normal.

I can't say this enough, but thank you to all for the calls, emails and prayers.  Between work and the kids starting a new school (and getting on the wrong bus and having to pay for lunch) I haven't had the chance to respond. But I have read them all and appreciate each and every one of them and YOU, my awesome friends and family!

Nothing New

Just feeling very anxious!!  The closer next Thursday (9/16) comes, the more I'm getting freaked out! I'm surprised by how calm I am at work. But it really helps to try to focus on getting things done and still trying to hit deadlines.

Still, I'm starting to feel very nervous.  I know I will be fine, eventually.

As an aside, I must say that I LOVE Practical Law Company!  Every day I wake up wanting to go to work and that's an unusual situation.  I'm so excited to try to get my resources published through all of this. I will try to do whatever I can to stay current!

Thank you to all of my coworkers for evertythig you've done. I'm so lucky!!!

The Results Are In...

The 3rd tumor was benign (thank God!) and the liver cysts are nothing to worry about. So I have a lumpectomy and lymph node removal scheduled for September 16th.  I actually go home the same day.  There will be 3 to 4 weeks of recovery during which I'm not allowed to work.  Thereafter I will have 4 - 5 months of chemotherapy and then radiation for 5 weeks.  If all goes smoothly and they manage to get all of the cancer, I should be ok by next April or so.

It's going to be a bumpy, unpleasant ride but at least I know where I'm going.

Thanks to all for the prayers and good thoughts!  Thanks to everyone for putting me on your various prayer lists.  Please keep them coming - it really helps and gives me peace of mind!

Big Day Tomorrow

Tomorrow I have pre-surgery testing (blood work, EKG, chest X-ray) and then the meeting with the surgeon (Dr. Gemignani) where ALL will be revealed.  She should have the results of all my various tests and should be able to advise whether a lumpectomy is still an option or whether I will need to resign myself to a mastectomy.  I just want to KNOW! 

I will do whatever I need to do to move on with my life.  Just tell me and I will spring into action.  This waiting business is more than annoying.

2 Week Anniversary - How it all started

Many people have asked how I found out about this. Well, here's the history:

Mid-June or so I had pain on the left side pre-period (sorry if this is TMI for the men reading). However, it disappeared so I thought it was "just a swollen gland". Some friends confirmed that this was possible. The next month it happened again but a little more severe and it didn't go away as fast, plus the "swollen gland" was still there. I was due for a ob/gyn appointment anyway and I knew Dr. Zilberstein (who delivered both Max and Leo but who also is very blunt and has a terrible bed-side manner) would yell at me that I hadn't had a mammogram yet. So I quickly scheduled a mammogram before my appointment with Dr. Z and pointed out that I had felt a lump.

Day after mammogram they call me and tell me I should have an ultrasound.  So I schedule it for the following week.  I have the ultrasound.  They tell me I should have a biopsy ASAP and if the schedulers tell me that the radiologist is fully booked for the week I should tell them to call him. Hm. Sounds serious. So that's what I do and I'm booked for a biopsy THE NEXT DAY.

Have biopsy, still thinking it might be a cyst. The radiologist tells me he thinks its a "tumor". I say, "OK, a tumor. Could it be benign?" He says, yes, but probably not. He's pretty sure it's cancer as he's seen enough of these and he doesn't want to lie to me. He suggests I start looking for a surgeon.  WTF???  I leave, stand in the middle of 77th street, start bawling and call David, my mom, my sister, Lilly, etc.  The doorman of the building I'm in front of goes in and out, in and out, never says anything. Typical New York.

That was Weds. (8/11), the worst of it.  I get used to the idea that I may have cancer and Friday (8/13), on the way to work, the radiologist calls me and tells me that he was right. I have breast cancer.  By then I'm calm. I am numb but not surprised.  I'm glad he told me on Wednesday.  I am prepared for the fight. That was two weeks ago. I can't believe everything that has happened since....

Survived the MRI-guided biopsy - Just Barely

The CAT scan of liver cysts was on Thurs. That was fine. I'm not concerned b/c I've known about these cysts for a few years, saw a specialists, and was told it was nothing to worry about. Very common. But of course, Sloan Kettering is not going to take my word for it so it had to be checked out. If something comes of it, I will be surprised.

The MRI-guided biopsy on Friday, however, was utter hell. I told them the last biopsy hurt horribly and they said, "Well, did you have it here? It won't hurt." Turns out I don't react well to the anesthetic that they use - it felt like a million needles were jabbing me before they even jabbed me with a needle!  45 minutes later and I was a total wreck!  I will spare you the details except for the fact that I proclaimed loudly that "this is exactly what I wanted to avoid!" And then I started shaking uncontrollably and crying. Oh, and then they made me do another mammogram. Yahoo!

Adding to all of that, there were about 20 doctors or so observing the MRI. That freaked me out, thinking "OMG! I must be a really serious case!" Turns out they were physicians from other countries learning how to do the latest MRI biopsies.  Some introduced themselves - they were from Italy and Australia. Glad I could be of some use, I guess.

Afterwards I was a total freak but managed to visit the "boutique" where they sell everything breast cancer-related. I bought 2 "bras" to sleep in (as per doctor's orders) which they just directly billed to my insurance. They had a decent selection of wigs and other paraphenalia.  OMG - I can't believe I now live in the breast cancer world. I was actually excited to see what all they had because I have no idea on where to find wigs, etc.  Not that I think I'm a wig person - I actually don't think I am. But Max requested that I wear a wig to his yet-to-be scheduled soccer games.  We will see.

Appts. Update

Many people have asked:  the CAT scan is Thursday (8/26) at 3:20 pm and the MRI biopsy is Friday (8/27) at 8:30 am.  David is going with me to the MRI because I'm expecting it to be horrible!

Thank you so much for all the emails and calls!  It makes me feel so much better that I have so many people rooting for me!

Now more bad news...

Well, the results of the various tests are in and they want me in for an MRI-guided biopsy of the small tumor and a CAT scan because they "happened to see" cysts on my liver at the bottom of the last MRI.

The last 2 biopsies hurt badly and I'm still bruised and swollen from them.  I'm not looking forward to another one. This is so depressing!  I don't know how I'm managing to hold up...

Tiny Bit of Good News

I received a call from one of the doctors telling me that I tested NEGATIVE for the breast cancer gene.  This means no "automatic" double mastectomy!  Fabulous!  Back to looking forward to a lumpectomy and radiation....

Gross Details

You all know how squeamish I am and how much I hate needles, blood, "anything that causes pain" and hospitals in general. I guess I need to get over that. Anyway, here is where things now stand:

One large tumor on the left side and one large tumor in a lymph node in the same area. Yesterday during the MRI they found a possible third tumor (which is very small).

I will likely have surgery (a lumpectomy) mid-September, then 5 weeks of radiation (once per day), then 5 months of chemotherapy (once per week, every other week).

However, I'm waiting to hear back on the full results of the MRI from yesterday. It's possible I might need to go in for an MRI-guided biopsy for the small tumor and/or have chemo before the surgery.

This has all happened so fast!  Unbelievable.

Heidi's First Post

This is Heidi's new blog to keep friends and family up to date on her newest challenge: surviving breast cancer!  No question, this cancer won't know what hit it!  With great doctors, a wonderful family and supportive friends, Heidi is in the best possible position to run - not walk - down the road to recovery. Check back for updates on the latest.