Thursday, July 23, 2009

Week after surgery update

Hi friends - sorry for the absence of posts, but I've been avoiding the glare of computer screens due to terrible headaches! Last I wrote, I was awaiting the sentinel node surgery on Friday the 17th. The hardest part of that day was not eating or drinking, so I went into surgery with a horrible headache. I asked my dad to try to find a danish pastry during his rambling walks around the Baylor medical campus - I mean, you can only sit in waiting rooms for so long and he always finds a little cafe tucked here or there!

The procedure begins with a radioactive shot into the tumor a couple of hours before the surgery - no fun there whatsoever! I glowed when I walked out of there...but that was the sheen of sweat from enduring such an invasive procedure! Whew! But this radioactive shot travels to the lymph nodes, providing a road map. From that diagnostic imaging center, we walked over to the ambulatory center for the surgery, where they have their priorities - "payment due when services are rendered" - such a bourgeois statement for such a serious place! But they are very efficient there and got me ready for the procedure. Mom and Dad were there with me waiting in the prep room, which was great because Dad was able to leave and call my sister, who was picking up Caroline at the airport. So I knew before surgery that she was home safe and sound.

Of all the IVs I've gotten in my life, it's amazing that the one prick I had the most pain from was from the actual anesthesiologist. I mean when you put one in, leave it laying flat against the hand for God's sake! Don't lift it perpendicular to the vein! I think he must have had out of town plans for the weekend and it was 5:00 Friday. My dad felt the same way about him.

Anyway, surgery went fine and for the first time in my life - I peed blue! The blue dye they inject behind the nipple after you're asleep also travels to the sentinel node. I remember waking up and asking the surgeon how many samples he'd removed, and he didn't know. Guess he wasn't keeping count. My results would be available the following Tuesday after 3:00. I think I was rather pessimistic about it, feeling assured that the cancer would be found in the lymphs, so waiting was tough.

When my parents were allowed to join me in recovery, my dad had a danish pastry! Man, that sweetness hit the spot! The poor recovery nurse kept upping the pain killer as nothing she was using was working. Finally told her to stop as I didn't want to get groggy and the pain was certainly bearable. The incision is only about 2-3" long, right under the arm pit.

As far as reaction to chemo, my biggest complaints were the GI issues, which had me eating the BRAT diet, so all you mothers know what that means! The headaches I'm not sure about - but I'd wake up several times during the night with them. The other is indigestion and heartburn - reminescent of pregnancy. In fact, a lot of this has reminded me of pregnancy, the ultrasounds, the nausea, heartburn/indigestion, but you don't get a little bundle of joy at the end. In fact, you're destroying life - even if it's unwanted life.

I will say that for a few nights, I took a small bite to eat and put it next to the bed so that when I woke up, I could take a few bites. Seemed to help to not wake up in the morning with an empty stomach. The third morning after chemo, I woke up nauseous. All I can say about that is beware of the bile burp. It's the only time I've vomited with this first round.

I called my surgeon yesterday morning and got the tremendously wonderful news that all my lymph nodes are benign!!! No more surgery to remove those and risk the lymphodema and no radiation therapy on them. What a wonderful relief that was, on multiple levels. I think my biggest concern was the lymphodema, which I'd have been at great risk for. I knew I could deal with radiation, though I didn't want to have to tack on 4-6 weeks of that treatment on the tail end of surgery, but adema you live with the rest of your life. Since I always have an eye on the calender, projecting the time I can join my family, tears of joy were there - well, I can't help it, when my mom cries it makes me cry!

So today is one week and 2 days after round one (do I hear a ringside bell?), and I am feeling much relieved of many of the side effects. Cautiously looking forward to a weekend at my big sister's house in Longview - where I always have such a good, relaxing time. She and her husband Steve have made reservations for us at their friend's Bistro for dinner, which should be really nice to have the four of us there (Stacy, too).

I've heard from so many of the friends I've made from around the world and it's so comforting to know prayers are going forth from so many places. It's a multipronged attack on the heavens! So I thank you all and ask that you keep up the good work - so many have been answered and I still consider myself so very lucky!

I'll leave you when a little story that a friend of ours told me on the phone earlier this week. Ben used to be Bernie's boss when we lived in Europe 20 years ago and we've kept in touch and visited ever since. In fact, Ben went with us last spring on our chartered sailing trip in the Grenadines. He's great people! His wife was fighting cancer back in 2000 for what was fundamentally terminal cancer, and it did kill her. He told me that during chemo he woke up one night at 2:30 to Missy having the dry heaves on the side of the bed. He asked if he could do something for her and between heaving she said no, there wasn't. He woke up at 4:30 to find her again sitting up with the dry heaves. He asked her to please let him do something for her, and she said there simply wasn't anything he could do, but all she could say was that she hoped that damn cancer was as sick as she was. That's the spirit! When Missy died, her daughter Sissi was unknowingly pregnant with her 3rd daughter, who they named Missy - no doubt that spirit lives on!

Wednesday, July 15, 2009

One down - 5 to go!

It's now the morning after and I'll take my 1 down, 5 to go over Bernie Madoff's 150 to go any day!

There is nothing to fear from the chemotherapy treatment procedure, unless you're an extreme needle phobe! I mean, they do have to put in an IV! But after 3 cycles of mild steroids, I was literally raring to go (think my pulse was 105). I received the 3 medicines which are the typical protocol for invasive ductal carcinoma - called TAC, which stands for taxotere, adriamycin, and cytoxan. Those don't roll off my tongue as easily as I suspect they will in 6 months time!

I was doubly pleased during my appointment with my oncologist prior to the treatment. Firstly, he addressed my issues with the surgeon's administrator and I tagged her "the weakest link". They'd spoken with her about me, so I'm sure she'll be shooting me daggers with her eyes next time I see her. That's okay, I can tussle with the best of them, especially when my life is at stake! Secondly, Dr. Pippen - which sounds far too Dickensian for a modern day oncologist - approved my trip to Bruxelles around August 13 to take the kids to their dad. I want to be there for their first day of school on August 26, and it looks like I'll get to do that!

So, with a skip in my step, and yes, the racing pulse, I was off to the Infusion Room for my 9:30 appointment. Well, the wait in an Infusion Room lobby can be anywhere between 1 and 2 hours. Mine was closer to one hour, and as your first chemotherapy takes longer due to a slower drip rate (they watch for any allergic reactions), you will be there longer than you expect. We left there at a quarter of 2! Take something to drink and eat! The chemo suite was nice at Baylor, they had cubicle walls and each recliner could be privatized with a curtain. It even came with my own VCR TV.

This morning all is still going well. I was back at Baylor this morning for a shot of neulasta, which your onc may or may not prescribe for you. It is a relatively new medicine that boosts the production of white blood cells and may make your bones ache. I'm just not sure I'll be able to distinguish neulasta bone pain from my regular aches and pains of aging!

This afternoon I am off for more fun - I am going to my hair stylist of 30 years, Scott Cearly (pronounced Curly and yes, his real name), to give him the chance to cut off my hair in a short style. Afterall, he'll have plenty of opportunity to style my hair short next year as it grows out! Why not see what he can do with it now! Really, though, it's not going to be a bad thing to be hairless in a Texas summer of triple digits!

Ladies, if you happen to receive an online petition which concerns insurance companies pressuring members of Congress to agree to pass a law enacting outpatient masectomy surgeries, please take the time to sign it. It was a sad day in medicine when a third party entered into the relationship between doctor and patient - that insurance carrier is always sitting in the office with you!

So now I await the sentinel node surgery on Friday - significant because it will determine whether or not I have to have radiation therapy after the masectomy. It is also significant as if there is lymph node involvement, my risk of recurrence increases by 10% for each lymph node that is positive. These nodes will have to be removed, putting me at great risk for lymphedema, a swelling of the arm which is incurable and something you live with the rest of your life. The pathology won't be back until next week, so I'll have to wait! Unfortunately, while I am in surgery Friday, my daughter Caroline will be arriving at the airport from her summer camp in Baltimore. I'm sorry I can't be at the airport for her, but I'll be looking forward to seeing her beautiful face afterwards!

Monday, July 13, 2009

Preparing for Chemo

Truly, now is the night before chemo, a good time to revisit my comment about "fun". I am a true believer that laughter is the best medicine, that even through the haze of uncertainty and fear, a ray of levity is within your grasp! Reach for it and encourage others to do so, as well.

As I sit here, I am looking at a BLONDE wig I purchased last week. Yes, blonde! My husband always wanted a blonde, yet he married me - brunette to the roots (even today at 46, I do not have to color my hair!). I decided to have fun with my wigs -go out on a limb and change my looks for the few months that it was made easy for me! Yes, it was fun to try on wigs of different colors and styles, fun to vamp it up; it's fun to plan my "coming out" party which will celebrate my hair loss. You'll read it in the literature - having a coming out party puts you in control! I'm going to have fun getting my hairdresser of 30 years to cut off my hair in a short style for the few weeks that I have left with my own hair. You certainly know by now that for hygiene reasons, "they" suggest you cut off your hair before the alopecia sets in. So go for that bob, that spiked look, whatever you haven't had the nerve to try! Your opportunity is being handed to you on a silver platter - okay, really it's in a clear bag with a tube into your arm, but it's there nonetheless!

So tomorrow after chemo, I have an appointment to try on a replacement wig since the one I chose is on back order and will not be available until August 30, a full month after I will be bald. Another lesson for you cancer newbies - chose your wig well in advance of your need. Not only will it help your wig stylist to best match your natural hair color, it will allow them time to order your wig long before you've lost your hair. There are plenty of salons nowadays that specialize in providing hair and breast prosthetics to chemo patients. I went to "All About You" in Plano, Texas and was very pleased by their service. My wig specialist is a one year survivor of breast cancer and her encouragement is invaluable. Don't forget to ask your oncologist for a "cranial prosthetic" due to chemotherapy induced alopecia (hair loss) - you may just find that your insurance company will pay for part of your wig.

As you may have surmised - I have decided to have 2 wigs - one for fun and one for the serious business of closely resembling my own hair (you know, for those business functions of your's or your husband's). With the choice of wigs, turbans, hats, and scarves, I'll be reinventing myself each day! Now THAT is fun! While funny, being ribbed by my husband that he will finally have more hair than me is something I never expected to hear! See our photo - it was taken last August in Cerro Azul, Panama - about the time that my tumor would have been visible in a mammogram!

So, my tote is packed with reading material, water, and snacks, a puzzle or two. You will always need a person with you for your first chemo treatment. I'm not sure why that is, but with my experience with my mother-in-law's first chemo, they mainstream benadryl into your IV for this first "cocktail" in the event you have an allergic reaction to any of the drugs. So I may just sleep through the "party".

Tune in again for the personal perspective on a first chemo treatment.

Family

Moms take it REALLY hard! Dads and sisters are there to do what needs doing. I have no idea about brothers! Husbands can show a side of themselves heretofore untapped!

Children - no good way going about telling them. There's plenty of advice on how to break the news based on their ages. But I did decide that I wanted to know what their concept of cancer was before telling them of my diagnosis. If their one word reply to "What does cancer mean to you?" was "death", then that was going to completely change my approach. My 12 year old son's response was "smoking" - YEAH, our preaching about the evils of cigarettes had worked. My 14 year old daughter didn't have one, so that made it much easier. We told them at a "celebratory" dinner that I was a Stage II and my prognosis was great. It's amazing how quickly the conversation turned to the color of my future wigs!

My Diagnosis

My medical confession - I was a year and a half late for my mammogram. Surely after 10 years of yearly mammograms I had bought a free pass to be late? After all, I was not at risk! Alas, it was the lump that had me frantically dialing my OB/GYN's phone number to schedule my annual checkup. As we have all experienced, there is a time lag between that call and the subsequent GYN appointments and follow-on mammograms - in my case, several weeks during which complacency sustained me in Denialland!

My GYN was apparently concerned enough by the appearance of my breast that she wrote a prescription for not only a mammogram, but also an ultrasound "if needed". The morning of the mammogram I was lucky enough to have the radiologist on site to immediately read the mammogram and order the ultrasound. I knew enough to recognize that that was not a good development and that I was well on my way down the highway from Denialland to Concernville.

Have you ever known a person to be more vague and noncommittal than the technician performing a diagnostic test? They must send them to workshops to learn how to keep a passive face and totally eliminate any verbal indication about whether or not what they are seeing is good news or bad. It was with mixed emotions that I met the radiologist with a firm handshake and swift arrival in Cancertown. Did I mention that my family and I were in the middle of a move from Virginia Beach to Bruxelles, Belgium? A detour was now on the map. My husband was in Bruxelles already, arriving in two days for the packout. The radiologist's words dealt more with how I would manage the logistics of my cancer treatment during my move than they did the diagnosis. I had to back him up a little and ask him what he meant by the "specific characteristics" of cancer. Crystalized formations? Hmm, obviously radiologist lingo! Suffice it to say, he left me with no doubt that this was cancer and I should start planning accordingly. Well, anyone who knows me knows that if there is one thing I can do, it is plan for all contingencies.

The next day I had the core biopsy -five samples taken and hand carried by my surgeon to the path lab simply because he knew I was moving out of my house in less than one week and NEEDED the diagnosis confirmed. Several frozen sections later, I sat in his conference room and heard the confirmation that my lump was cancer. I had no time for disbelief - my daughter was having oral surgery the next day, my husband arrived in from Bruxelles shortly after her surgery, my son left for a Boy Scout campout the next afternoon, and I had to pack for the unknown - treatment, surgery, reconstruction in either Virginia, Texas, or Belgium. I was lucky to have options, wasn't I? I didn't think so - it made my packing impossible!

The day after the biopsy, a Friday, I made the decision to get a second opinion at MD Anderson in Houston, Texas. To do so, I had the help of Suzy Q at the surgeon's office in scheduling all the tests that MD Anderson required for a consultation - chest xray, bone scan, breast MRI, CT scan, and blood work. She was on the ball - I managed all of that in 4 days thanks to her. (By the following Tuesday, I had the news that the tumor did not appear to involve the chest wall nor did it appear to have spread.)

It was during my daughter's surgery that same Friday that I learned that my specific cancer was one of the most common forms of breast cancer - ductal carcinoma. Invasive ductal carcinoma to be exact. This is what Dr. Walters at MD Anderson would later call "garden variety" cancer - a good thing since the treatment protocol is well established.

To top this day off, as they wheeled my daughter out of surgery and out of the building, I went to get the car, only to discover it had a flat tire! I knew how it felt.

Decisions and Delays

You might wonder about the title of my blog - 'Twas the Night Before Chemo. Well, that's what today is. It's been over 5 weeks since the diagnosis and I am just beginning chemotherapy tomorrow morning.

The first major hurdle I had to overcome was the decision about WHERE to do the chemo. My husband was willing to give up his "best job ever" in Bruxelles so we could stay put in Virginia and do all of my treatment there. The thought that we would give up the life that we had been planning for for almost a year, the home in our little Flemish town of Hoeilaart, the kids' new school, didn't sit well with me at all. Once I knew that my prognosis was good, I felt very strongly that what I needed most from my family was that they continue on with that life in Belgium so that I had that life waiting for me. If there ever was a time that my husband proved to me that he loved me, it was in his relinquishing my care to my parents and sisters while he took the kids to Belgium to live. He agreed to be what I most needed from him - a single parent to our children while I received treatment in Texas. Tough decision you can be assured.

The second decision many of you will face is what protocol will you follow? Though I've been diagnosed a Stage IIa, we still don't know the lymph node involvement. My sentinel node biopsy surgery is scheduled for July 17. After that, I will know if I am facing radiation therapy after the masectomy surgery. There are many options you will face: surgery first; chemotherapy first; surgery sandwiched in between chemotherapy treatments; reconstruction during masectomy or after. These are all very personal decisions, some which are specific to the location and type of your cancer. Your surgeon, oncologist, plastic surgeon, and radiation oncologist will all have an opinion!

If you happen to be taking your treatment at a center such as MD Anderson, or in my case, Baylor, you may be given the option of being involved in clinical trials. Because I am on a time schedule, trying to reduce the time I am separated from my family, I chose to go straight to the established protocol for neoadjuvant therapy - meaning I am having chemo first. Odds are that with the location of the tumor, I will still end up with a masectomy, but what have I got to lose in trying to shrink the tumor before removing it? A breast? For me, the other contributing factor to the neoadjuvant therapy was the psychology behind knowing that if my chemo is shrinking my tumor, it is also killing any nomadic colonies of the cancer that may have taken up residence in my bones, brain, kidney, liver etc. That will be powerful knowledge, because let's face it, no diagnostic test can detect a colony of 10,ooo cancer cells - they are simply too small.

Another issue I want to impress on women is that I have learned you must be your own champion. Though I made contact with the oncologist in Texas the week of June 15 to get an appointment, I let the surgeon's administrator tell me not to worry about scheduling a consultation appointment until I actually arrived in Texas on June 28. Mistake - if you have made contact with the doctor, schedule an appointment. Do not be consoled with the idea that you can get in soon - I had to wait over a week AFTER my oncology appointment to meet with the surgeon. The import of that was that the oncologist didn't want to start chemo until the surgeon had "laid hands on me" - an odd phrase in the best of circumstances! Once I met with the surgeon, after a week delay of my scheduled chemo, I then learned that they couldn't schedule me for over a week and a half for the sentinel node biopsy surgery - alluding to the fact that chemo would again be delayed.

I had absolutely been lulled into a false sense of security by believing that the surgeon's administrator understood the importance of moving through these stages quickly. Do not make the same mistake. I also believed there was communication between the two doctors' office - there had not been - all information was flowing through me, the patient. My lesson learned and herein passed on to you is to be vigilant and follow your own care as if you are the only person who knows everything going on in your case - it may be true and assuming otherwise may cause you unnecessary delays.

The most recent decision I made was to join the 21st century and become a blogger - a huge feat for an otherwise computer illiterate. My thanks to my sister Stacy for all her help! The bottom line for any woman who is facing cancer is to be proactive in your own care, don't make any emotional decisions, and have fun where you can! Fun you ask? Yes, absolutely! Tune in for my next blog - "Preparing for Chemo".

My First Symptoms

Who knew complacency could be such an enemy? Well, I know now! It was never going to be me that would be the "1 in 8 women" to get breast cancer. No one on either side of my family had EVER had any kind of cancer and frankly, I didn't have enough breast tissue to get breast cancer. My cup size was a double AA (incidentally, the same size as my shoe width!). Well, the truth WAS out there - the locations of the two most common forms of breast cancer are found in breasts of every size - the ductal and lobular.

Most interesting and what I want to tell women everywhere is that in my ductal carcinoma - the breast lump WAS NOT MY FIRST SYMPTOM! My first symptom was a retracting nipple, which is, I suppose, one of the manifestations of the literature's "nipple changes". As women, we know all about nipple change - we see changes in puberty, arousal, pregnancy, aging, nursing - heck, even when we wear too tight of a bra we can see nipple change! I did, so, I thought nothing of my flat nipple, which preceded my discovery of a lump by several months.