Monday, December 1, 2008

20 Treatments Down - 13 to Go!

I didn't realize it had been so long since I blogged last. I take that as a good sign that I'm thinking less and less about the cancer and more and more about the next phase of my life. Going from "Hold" to "Active" status.

The past two weeks have been uneventful except for missing one day of therapy because the machine broke. So now my last treatment will be December 17. The doctor said my skin is in much better shape than he anticipated. I'm having some breakdown under my breast but it's very small and very manageable.

David and Rachel came up for a great idea to help it heal - a boob jack to hold it up and a small fan to provide air to it!!! We tested the theory using a toilet paper roll, but after a little while, the weight of my saggy boob crushed it, but the concept is a good one! I'll wait to see this on the market next year.

Saturday, November 22, 2008

Dare I Say I'm More Back to Myself Again?

These past couple of days have brought new clarity. I seem to be thinking less about the cancer and the treatment, and can focus a bit better. Not sure why unless it's that the treatment is on the way out rather than the way in, and there's hope that my life can move from "hold" status to "moving on" and getting on with life.

I cannot tell you what a great feeling it is to "feel" again. I'm happier and more content and laughing more and just feeling better about everything around me again. Sure, my breast is still pink and the treatments are a daily annoyance, but it'll be over in a few weeks and then it's just a matter of taking a pill everyday for five years. Certainly a MUCH more normal way to live.

And if God is good and my luck is positive, this will all be a major memory to look back on when I'm old and MORE gray than I am now. Happy Thanksgiving!

Wednesday, November 19, 2008

15 Down - 18 to Go!

Things continue to move along. Last Saturday, we celebrated a beautiful event with a very special friend, her family, and community, and it was life affirming. Not only did I see people I haven't seen in years, but the sense of love and family was awesome. It was a wonderful evening!

Today was the first day of radiation where someone was there for an emergency treatment. Turned out this young woman was experiencing bone metastises from breast cancer and in severe pain. The whole thing was depressing. A group of us sitting in a room and not being able to avoid hearing her tell her companion about her experience. It shakes you to the core, but makes you feel so lucky it's not you. However, it does remind you of your mortality for sure.

Monday, November 10, 2008

8 Down - 25 to Go!

Finished my 8th treatment today. The skin is looking very good, although its quite pink. The ALRA cream is keeping it from breaking down, which is very important. The big change this week is that the radiated breast has shrunk considerably. Probably something I'd notice more than a mere stranger seeing me fully dressed, but I do realize it, and it is kind of sad.

Over the weekend, I started feeling a little more tired than usual. Just not sleeping that great at night, but not being able to catch up during the day. When I left work today, after a difficult workload, to get treatment, I was just exhausted, but there were still things to do. So I'm going to make it my business to get to bed as early as I can and just relax a bit.

I can't stop focusing on the fact that I had cancer! I can't seem to get it out of my mind lately. I am really angry again. While I know all the good things about the type I had, it's just that I had it and it can always creep back. Yeah yeah...I know that I'll be vigilent and do all the things I need to in order to catch anything as early as possible, but I'm not so naive to think that I'll never be at risk again.

Ignore my's pity party day.

Saturday, November 1, 2008

Nothing is as They Tell You

I believe that nothing is really as they tell you. It's really more of an average. For example, I didn't expect SEVEN tattoos. I get into my first day of daily treatment, and it turns out the one of the main tattoos on my bad breast is 3" off. EXCUSE ME? That's not a small difference. Anyway, I now have tattoo number 8. So I told my hubby that I had a special surprise for him last night when he came home from a business trip. I gave him a pen and told him to connect the dots. Not funny...but you gotta laugh it off, right?

Going back a little, after radiation day one, I go home and notice they put some tape over two of the tattoos at the base of the bad breast. I pulled it off because after the simulator, they left on some things they told me to take off at home. Well, I got issued a new "youknowwhat" on that one. Per the rad tech, "Didn't I tell you yesterday NOT to take those off? Now we have to do it again. Hrummph."

Everything up to the radiation therapy had been going very well. But I must say, I haven't been impressed with this part. I told the tech that my skin was already pink, and she says "Impossible, no one gets pink this early." So I start justifying myself, which is ridiculous, and say "I've got extremely fair skin and always burn quickly so never say never." She then gets a bit of an attitude and I tell her, "Listen, this may be old hat for you doing this everyday, but for me this is new. I may not remember everything you tell me, and not everyone fits the mold of what you think it should be like for them." She later apologized for being a jerk (jerk=terse in her dictionary).

I hope this radiation experience gets better...cause it sure isn't what I thought it would be, and I'm normally pretty easy going and witty. I see the radiologist on Monday and he and I are going to have a little discussion about all of this.

Thursday, October 30, 2008

More Genetic Tests Results

Yesterday afternoon, I heard from the genetics counselor again. She advised that the final genetics tests (the $3000 test) were in and everything was negative. She was thrilled, but not as much as I was. She said that she felt strongly after seeing the results (and she gets more than a positive or negative result) that the fact that my mom and I have both had breast cancer is more coincidental than heredity. She said it could be environmental or chemical or other reasons not yet defined. She advised I continue with my follow-ups as recommended by the oncologist (duh...) and that Rachel and Carol start their vigilence at age 40. As you can imagine, Carol and Rachel were ecstatic! Too bad it takes so long to get good news.

This afternoon, I start the first radiation treatment. One of my co-workers brought me a gift today. She saw a ceramic pink ribbon today telling me that she had been thinking of me when she saw it. I was really touched, considering that before this came about, no one was talking to me at all.

Tuesday, October 28, 2008

Radiation Simulation - Not a Joy Ride

After the happy moments last Thursday, I headed off to Radiation for the simulation. This is where they position you and draw the markings they need to properly irradiate your breast. In my case, I will have 33 treatments daily (except for Saturday and Sunday).

So they call me to the back and have me go into this dressing room that reminds me of the gym and I have to take off everything from the waist up. Then I'm guided into a waiting room of chairs lining the walls, a lonely TV hanging from a hook and set on One Life to Live, and a lot of cancer magazines. I tried to talk to this lady who walked in a little after me, but she was not very friendly so I just waited nervously and hoped someone would come get me soon.

About 15 minutes later, I was led into a room with a thin metal table with a form that looked like I would be sitting on an angle. So I hop up on this table, which barely is the width of my bodacious body and get into position. I had to put my arms in these boxes over my head and hold onto handles (kind of like a kinky movie or stretching table if you can picture that). My tush was against this hard form so I was in a sitting type position and a hard pillow was under my knees. My head was flat against the metal table and I had to maintain this position for well over an hour while they marked my chest up like a bad Picasso print with Sharpie markers. The markers, in all different colors, ended up staining my $70 bra. It was grueling to stay in that position that long, and I moved slightly after warning them. They were NOT happy. Too bad. I'm a human. Anyway, they ended this torture session with putting 7 tattoos on me for permanent marking - 2 on the good breast and 5 on the affected breast. I can't begin to imagine why any normal person would CHOOSE to have a tattoo!

Next Thursday, I start the real stuff. Oh joy oh joy!

Thursday, October 23, 2008

A Lucky Lady

I'm still on a high about my BRCA negative test! So lucky, particularly after reading the breast cancer bulletin boards and all the horrors that women are experiencing from their friends and families. In fact, I was telling David about all the women whose husbands left them after they had their diagnosis. He was in his closet putting away clothes and said to me, "Sorry, you're stuck with me for the long haul" and turned around and smiled. Gawd, I love that man!

Wednesday, October 22, 2008

All Good News Day!

My genetic test for the BRCA1 and BRCA2 mutated gene came back a week early, just in time for my radiation visit today, and the good news is that I do not have that genetic problem! This is not just good news, it is wonderful!

I don't have to have the prophylactic bilateral mastectomy because my risks have dropped back to the "normal" of others with DCIS. However, the oncologist told me even if the test did come back normal, I should still have the oophorectomy to rid my body of the estrogen that feeds the type of cancer I had. The radiologist suggested I use this oncology gynecological surgeon that I've heard great things about for my oophorectomy/hysterectomy. He's in the same hospital system.

The best part of this test result is that Carol and Rachel can relax a bit. Of course, they must be aware of breast changes, but it won't haunt and scare them. That's a nice gift indeed!

The radiation visit went very well too. The radiologist was very patient in answering our many questions, as you hope they would all be, but many are not. Tomorrow I go back to the radiologist for the simulation visit at 2 PM. During that visit, the doctor positions me on the x-ray table, puts my arms in some position and then tattoos my breast where the radiation beam should go. Then it takes about a week to figure out the plan and then start the daily treatments - 28 to my entire left breast followed by five directly to the lumpectomy site. I go Monday through Friday, 1/2 hour each day, for these daily treatment. Only side effects that I might experience are fatigue and redness of the skin. Doesn't sound too bad.

Tuesday, October 21, 2008

Feeling Low Today

I am starting to feel very sad for my family. Despite all the good news, they are very stressed and scared about me. David has been very sad and when I try to get him to talk about it, he doesn't know what to say. So I ask him if he's scared about me and he shrugs and says he guesses so. Then he starts tearing up. It breaks my heart. And Carol, who has been away at grad school during all of this, told me today she is very stressed - knowing I've been sick in addition to her boyfriend's grandpa dying in the past month, and my Aunt Sylvia, in the dying process from 10 years of Alzheimer's. Rachel seems to be doing fine. I'm grateful.

I really hate having this disease. I hate having to get treatment. I hate having to do prophylactic surgery. I fear I'll have the BRCA gene mutation. This really sucks and it won't go away, ever. Sure, I'm sure there will be a time when I don't think about cancer 20 hours a day, but it will always be there at the back of my mind. Any long-standing aches and pains will create fear of its return. It's my new pet (monkey on my back), but this one will last a lifetime and my stress will continue to feed and nurture it.

Gee, and tomorrow I can look forward to meeting with the radiologist about the next phase of treatment. Oh boy! Oh boy!

Monday, October 20, 2008

Pink Day

Yesterday was the Race for the Cure, and I had the opportunity to walk with friends, but I just could not do it. Realizing that I would see other survivors there in all different phases of recovery just put the wall up for me. So while I thought I was really far along mentally, guess I am not as strong as I think I am.

Funny thing, though. In the afternoon, I went shopping and ran into a woman wearing her survivor shirt from the event. A total stranger and I started talking to her about the walk and her experience. She told me she received her diagnosis in New York and had come to Baltimore for treatment and was 1 year out from a year of intense therapy. Her joy was having her daughter come down to walk with her. I shared with her that I was a frightened of the experience, and she said she could have never done it the first year either. We parted with a hug - a stranger and myself. Yes, the sisterhood is strong.

Tuesday, October 14, 2008

The Genetics Counselor Visit

I am so grateful that we live in a metropolitan area where so many resources related to breast cancer are available. In particular, I'm quite pleased with the services I am getting from one hospital system. It makes care easier since all the providers can communicate easily and are familiar with each other.

From past blog entries, you have learned that I have a strong family history of female-related cancers, so the surgeon and oncologist felt strongly that I could benefit from genetics counseling to determine if I had the BRCA1 or BRCA2 gene mutations that are found primarily in Jewish men and women of Ashkenazi descent. Today, I went for that visit and it was eye opening.

The genetics specialist had taken my family history and entered it into a special database to determine my personal risk, which was 19% based on my mother's history alone, compared to 10% of the Jewish women over 40 with history of breast cancer of Ashkenazi descent. She felt it would benefit me and my daughters to follow through with the testing, which is in two parts.

Some insurances won't cover it so I have to be prepared to pay toward it, but David and I discussed this was important to know so we're going for it. The first test costs $600 and it only tests for the BRCA mutations (3 types). If that test comes back negative, they do a more extensive test, which costs $3000. Hopefully, our insurance, which has paid up to now, will cover.

You may wonder what the benefits of this knowledge may be? If I am positive, then I have a 50-85% chance of getting breast cancer in my lifetime, which we know I already have. There is also increased risk in getting it in the non-affected breast in the future along with a possible 65% risk of getting ovarian cancer on top of the breast cancer. If I'm positive, I'll bow out of the radiation and go for a bilateral mastectomy and total hysterectomy, including ovaries to mitigate the risk. David and I discussed reconstruction a while ago, and we're both okay without going that route. I've been reading that should there be recurrence in the chest wall behind the reconstructed area, they have to remove it all anyway. I've enjoyed what I've had for all these years. They've effectively nursed my children, and did their duty so I can accept that they may be more a detriment than an asset.

With this knowledge, I can also guide Rachel and Carol in getting early surveillance, by being proactive. The genetics counselor advised me that new laws were passed this year preventing insurance companies AND employers from denying tests and treatment AND employment based on genetic results. The reason so many young women have recurrence is that there isn't early enough surveillance for those at risk. This way, breast MRIs are given yearly, in lieu of mammogram. MRIs help diagnose the density in younger breasts much better than mammograms so that newly developed cancers can be found before they become invasive. With positive BRCA, surveillance is recommended to start between 20 and 30 years old.

So you're probably asking what it means if the tests are all negative. The geneticist said that there could still be a family heredity, but the particular gene abnormality may not be established yet. Either way, I contribute to the pool of research knowledge that may help someone else.

Other things I learned today. I am considered at higher risk for recurrence just because I am premenopausal with breast cancer, even though I'm over 50. It is likely my mother was also premenopausal when the cancer first started, but the mammograms at that time just weren't that good at early detection, so she didn't know until she had a lump and already had node involvement. The geneticist said that other factors may have prevented my breast cancer from forming earlier. They just don't know enough yet. continues to be a journey for sure. Some days are more positive than others. Here I go again and wait for results, which I should hear in two weeks. It isn't easy.

Sunday, October 12, 2008

Sunday - One Week Later

Wow..I'm far behind on blogging this week. Last Monday, I went to the oncologist. She is a young fiesty spirited woman who felt strongly that I went to the very best breast surgeon around and that my chances for recurrence will be significantly reduced by going the radiation, Tamoxifen, AND...a new addition...having an oophorectomy route. This is all in light of my strong family history of female hormone-related cancers.

She said there is no need to move on the surgery immediately, but we'll talk again about it in January, after the radiation treatments are finished, to decide the next course of treatment. At first, I was really kind of taken aback. Getting your organs removed is not a "light" surgery no matter how they do it. In addition, would it be best to just have all of it removed? After all, I hear that Tamoxifen can cause weird side effects to your uterus too.

So I set out to find some answers this week, and all health personnel agreed a total hysterectomy with oophorectomy is the way to go. It can be done laparoscopy for reduced trauma. Of course, it's unknown whether insurance will pay for it, but that won't be a deciding force. Health comes first!

Speaking of doctors, I also had my post-surgery visit. Since the incision is already about fast, I've been released, and frankly, while I really liked the surgeon, this is one person I hope NEVER to see again, at least not in medical wear.

This week I go to the genetics counselor. It should be interesting. According to the surgeon and oncologist, the geneticist has the ability to search nationwide databanks to make informed recommendations. Even if I don't test positive for a known gene defect causing breast cancer, it does not mean that there isn't a gene defect. It may not have been discovered yet. So my participation is one of the ways to help these kind of discoveries. In the meantime, the geneticist works with the oncologist to recommend the most successful treatments based on others with similar backgrounds, health problems, and treatment plans. It sounds like a win-win. For anyone reading this who wonders if the genetics counsler is covered under insurance, it is NOT. However, the fee of $150 for the counseling, possible payment of the blood work (could cost $1000), and a month wait for the results could mean the difference of a more successful outcome. At this point, my goal is to prevent recurrence as much as possible! There is never a price on personal health that is not worth investing in, at least at this point in my life.

As for the other aspects of my life, I was happy to get back to work this week. Thinking about other things besides health is not mental reprieve. Working from home was helpful, however, as I realized my stamina isn't where it was before this started, but it's darn close.

Still no bites on our house or lookers this week, but we're not giving up hope. With the state of the economy, can I blame anyone for not wanting to spend money right now? Our timing has never been quite right...we have historical experience with that..haha.

That's it for now. More after the geneticist visit. Have a great week!

Sunday, October 5, 2008

Sunday - October 5

Today was a really great day! Except for lifting some heavy grocery bags with my non-affected breast side leading to some twinges and some oozing from the suture site, I felt pretty good. My energy levels are back, mostly because I'm not feeling depressed.

Still nothing new on selling our house. People in this area are seriously underpricing their homes to sell them, but we're not there yet. In the mean time, we did take a trip to Odenton to see our new house and the progress to date. The builder gave us a key to the house so we could go in and look around. We're three weeks from closing in the event we have a super quick sale so most of the house was put together.

We LOVED the way it looked! The chocolate marble fireplace is just beautiful with the oak mantel. The wood stair banisters are beautiful and match the oak steps. The carpet looks beautiful too. The carpet padding, which was out of our control, isn't quite as plush as we have in our current house, but we were told that using berber limits your choices since they don't want it to show separations over time since there isn't any pile. The ceramic tile and lighting in the bathrooms are just wonderful. The kitchen and mud rooms are just perfect too! We can't wait to make the move!

Tomorrow we go to the oncologist and hope that our luck continues. More tomorrow....

Friday, October 3, 2008

Two Days After Lumpectomy

Didn't sleep as well last night, more because there are issues with my work project than anything else. My breast suture line still twinges a bit and if I run up the stairs, I need to hold my breast to keep it from bobbing up and down, but that's nothing compared to what it could have been.
Today, my breast definitely looks smaller than the one of the right, not because of shape, but rather volume.

I'm still resting, just working on my computer while resting. So, off to finish a deliverable. Have a great weekend everyone!

Thursday, October 2, 2008

Feeling WONDERFUL Today!

The lumpectomy went extremely well. I was in and out within 2-1/2 hours from radiology to place the wire into the site through discharge. The surgery was anticipated to take an hour and it took 45 minutes. Recovery was to take 1 to 1-1/2 hours and only took 45 minutes for me to wake up and leave. The pain was not as bad as I thought, and Extra Strength Tylenol did the trick along with ice per doctor's orders and wearing my bra constantly.

I slept well last night, even on my tummy, which is my favorite position. I really felt rested this morning. Before showering, the bandage came off easily, and I could see the surgeon placed the incision totally on the side of my breast and way below my underarm. It will be totally unnoticeable even if I model in strapless gowns and bathing suits...horrors! The best part is that my breast doesn't look noticeably smaller than the other one although I can tell it is a little smaller, and my bra is not as stretched on that side. I'm sure it will be a little smaller once the surgical area heals too, but a small price to pay for my life!

I only wish it didn't take so long to get this surgery done. I feel mentally a million times better that this is out of me and I can move on to prevent its return. The pathology report will close the door on whether more surgery is needed, but I'm being optimistic that the door is closed!

I'm taking the rest of the week to do nothing but relax and sleep and heal. Monday we start again but I'm ready to continue the battle...

Thanks to all who are reading this for your prayers. So far so good.

Monday, September 29, 2008

Today I'm Scared...

I think it hit me again. In two days, I'll be having the surgery and I'm really scared. Even David came over to me with a hug, crying, saying how he can't think about it or talk about it without crying. He is so frightened. While cognitively we both know that the initial pathology is very optimistic, until we get the surgical pathology back, we will still doubt, and then after that, just knowing that the "enemy" has visited and has the ability to return will always haunt us. It just sucks!

Meanwhile, our house isn't going anywhere. The new house will be ready in 3 weeks, and the market continues to suck. The money I want to put into the house will be worth nothing by the time we go to settlement the way the market is. It makes me wonder if we're getting a message from a higher authority about all of this.

On the positive side, the women who are my work project team leaders have taken all responsibility away from me this week and told me they are managing things and not to worry. I should just concentrate on me. Who can ask for anything better than that? Yet I hate so much not to maintain control of things.

Rachel will be coming in this afternoon for the holiday. I can't wait to see her. She always makes me laugh, and heavens knows, I can use it right now. She will stay until after the surgery to help us and keep David company while I'm having the procedure. I worry so much for my David. He's my life!

L'Shana Tova to my Jewish friends who are reading this. I pray we all have a happy and HEALTHY New Year!

Friday, September 26, 2008

David's Good News

It's finally over. David's cardiac catherization showed no heart disease. In fact, the cardiologist offered to switch his cardiovascular system with David. David has to rest for the weekend and not drive or lift until Monday, but that's a small price to pay for the results of the test. Now it's on to further explore where it's GI or musculoskeletal, the other options causing the pain.

While we were there, I ran into one of my former managers who is now the head of the cardiac cath lab. We caught up on old times, and I remembered that she is also a breast cancer survivor - 10 years out for her. Her recommendation was to do all I can on this first shot since it's the best shot I'll get. I'm inclined to take her direction, particularly after reading about all the people that have recurrence who opted out on some of the offered treatment.

Thursday, September 25, 2008

Pictures and More...

Last night we celebrated David's 56th birthday. It wasn't the same without the girls, but I prepared a meal I knew he would like and topped it off with a baby birthday cake. He really liked it!

Since the breast cancer diagnosis, I had talked about taking pictures of my boob in its present state before the surgery. So last night, David took out the digital camera and we took pictures at every angle, covering up my face, just in case, g-d forbid, someone should ever find these pictures. I can ASSURE YOU that they will never be fodder for the Internet. hahaha

In turn, I took pictures of his chest since tomorrow he's having his cath and if for some reason there is more involvement than a simple stent, he'll end up with a bypass and change the look of his chest forever. We had some real giggles taking the pictures, and it was a fun way to cope with the stress!

Meanwhile, today I'm a mental wreck worrying about David's procedure tomorrow. We aren't dealing with a stomach flu, but rather, a potentially life altering problem. And David isn't one to complain easily. He'd rather keep everything to himself so I know he's feeling bad. And after all these years being together, we're so interdependent that anything that affects him, also affects me. The good and bad of long time loving relationships.

So..if you're reading this, say a few extra prayers tonight for David. Thanks.

Wednesday, September 24, 2008

Just When You Think It Couldn't Get Any Worse...

On my way to work today, a young man slammed into the back of my car and cracked the #$% out of my right bumper. G-d, do you think you can pick on another family? We've had just about as much as we can take right now.

Tuesday, September 23, 2008

Mental Health Checkup

Only 8 days away from the lumpectomy and 4 days until David's cardiac catheterization. Having gotten a pre-op checkup of my lungs, bloodwork, cardiac and respiratory status yesterday, I also thought this would be a good time to do a mental health checkup. For some reason, I wasn't sure I was reactnig appropriately to all the news. I really haven't cried all that much. I can stop thinking about our troubles when I'm busy, and am finding myself a lot more worried about David than myself. So...I made an appointment with my psychiatrist, whom I had visited in the past, but had not seen in the past 18 months. Today was the day!

When he asked me why I was there, I repeated everything I said above. We went into all the activities in my life within the past 18 months, including our plans to move. Fifty minutes later, I walked out with a pronouncement of excellent mental health - even more so than my last visit 18 months ago. He was pleased that David and I were reducing the commute and house maintenance stress in our lives by moving. He said my reaction to this illness was on par, basically because I really have no statement of the future until I get the results and talk to the medical oncologist. He further emphasized that he would be more upset if I were totally unwired at this point. Not that I should not be disturbed and concerned, but since I received "no sentence" at this point, why angst over the unknown? Makes sense to me.

So...I've conquered another checkpoint. Going to the dentist today for my 6 month checkup as planned. That's enough doctors until David's procedure on Friday. Then we start again. Here's hoping that Jewish New Year brings a happy and healthy one to the Klein family.

Sunday, September 21, 2008

Enjoying the Weekend

Since David found out he has to have a cardiac catherization next Friday, he's been as interested as I've been in keeping himself busy enough not to have too much time to think about it. So this weekend was chockful of activities.

On Friday night, we enjoyed dinner with my cousin Billy, his fiancee Randy, and his son Chad. We giggled through the entire meal as we reminsced about family history. It felt wonderful just to belly laugh.

On Saturday, we went to see the new movie, Righteous Kill, with De Niro and Pachino. We weren't disappointed. David thought maybe we should go to another movie immediately after that one, but I wanted to go home. I was mentally drained and wanted to rest a little. On the way, I thought it might be fun to go out with friends for dinner, and asked Sharon and Barry if they'd like to join us. We had such a good time munching over chinese food and talking about the usual subjects. It's wonderful to have such good friends!

Today, I went to the luncheon, saw the new house on the way home, and yes, they're really starting to put it together. The oak stairs and railing are in. The oak mantel and marble insert is in the fireplace and all the electrical outlets were covered with plates. How exciting, and I got to see all that through the windows! Now if only we can sell our house. David spent the day relaxing and then headed off to his Dad's place, finally telling him everything that was going on. As expected, he didn't say anything and life goes on.

Tomorrow is work...but we'll both be glad when Friday comes and David can finally have his procedure. Only 10 days till the lumpectomy. Time...please move fast.

Stepping Out with Breast Cancer Luncheon

Today I had the privilege to attend a beautiful luncheon focused on raising funds for the breast centers at North Arundel Hospital (now called Baltimore-Washington Hospital) and Anne Arundel Hospital. A few months ago, before my own diagnosis, my college roommate Lynn, sent me an invite since this topic is near and dear to both of us (both of our moms had died from breast cancer). I had put it aside not sure what I wanted to do since it was taking place an hour away and with our house for sale, I was never sure when I would be called to action to get the house ready and the dogs out the door. Lynn reminded me about it last week and after all that has been going on, I decided it would be a good thing. Lillie Shockney, a breast cancer survivor and director of the Hopkins Avon Foundation Breast Center was going to be the speaker.

What a beautiful thing to hear that 14 women (those that belong to this group) put on such a fabulous event! There were multiple vendors, all donating a percentage of their sales to the cause and over 150 women attending the event. Every table featured pink flowers and mylar pink ribbon and celebrate the cause balloons. There were lovely "goodie bags" for every guest and the lunch was delicious.

Lillie was a dynamic speaker who made us laugh and cry with the story of her personal journey. As a fellow nurse, there was so much I could relate to. When I left today, I felt energized again to move forward toward the next steps in getting this all behind me. Many thanks to Lynn for reminding me of the event. When I wear the cap she gave me, I will always know that there is love and strength supporting me every day through this heinous process.

Friday, September 19, 2008

Finally Good News!

After chasing down the breast MRI results, the news was good! There are no new places of concern. That means the lumpectomy will go as planned and we can start moving forward on getting this nasty stuff out of me!

Thursday, September 18, 2008

Friendships and Family

Calla Lily - Flower of Friendship. When I look back at my life, I have been very blessed to have had long lasting friendships, most stemming from my childhood. If you think about it, childhood friends accept you as are. After all, they knew you when you were most vulnerable. They knew when you had pimples before you discovered great makeup and Clearasil. They knew you when you fell on the playground, where they helped pick you up, dust off the asphalt grime, and take you to your teacher or your mom to wipe tears and get that band-aid that seemed to solve everything.

They knew you when you got your first bra, met your first get the picture. There is little energy expended in being anything other than who you are. They don't care what car you drive, how big your house is, or how much money you earn. Yet, they do worry that you and your family are happy and well. These friendships are indeed precious and in our transient materialistic culture, quite rare.

I am also blessed to have met new friends along the way, too through work, play, and community activities. To all of my friends, I extend my sincere thanks and love for your telephone calls and emails. They mean more to me at this time than you'll ever know.


Jo Ann

Wednesday, September 17, 2008

Monday 9/8 - Visiting the Surgeon

We were lucky enough to get an appointment with the surgeon one business day after the diagnosis. I cannot express enough how important this was to us. The uncertainty was making us crazy. Rather than repeat all the detail again, I'm including an email I sent to our many friends and family members:

Dear Friends and Family,

For most of you, this is an update and for some of you, this will be the first news you will hear about this. Last Friday, I was diagnosed with ductal carcinoma of the left breast (DCIS). I was lucky to get an appointment with the surgeon today and David and I spent 3 hours with her. Dr. Lauren Schnaper, at GBMC, explained very thoroughly how very lucky I am that the cancer is NOT invasive, is a VERY LOW grade and it's about the best scenario you could hope for, if you have breast cancer. I'll be having an MRI before the surgery, since Dr. Schnaper noticed an area on the mammogram that she did not like, and I'll most likely end up with another biopsy before the surgery scheduled for Wednesday, October 1. Yes, it is the second day of Rosh Hashanah, but it is the first appointment I could get since she wanted lead time for the biopsy, if it was needed.

Based on the results of the MRI, if everything is a go and the pathology doesn't change, I'll be having a lumpectomy. After that, I have an appointment with a medical oncologist. Apparently, this kind of cancer and the fact that the biopsy was reactive to estrogen and progesterone responds very well to an oral hormone therapy drug, Tamoxifen. You take it for five years, if you can put up with the side effects, and it reduces your risk of a second episode is reduced by 50% according to the latest studies.

In some cases, women with this diagnosis also have radiation, but the surgeon says it's a one shot deal and you have to weigh whether you would take that route now or save it in case the cancer did return, and you really needed it for a more invasive cancer. Because there hasn't been a lot of research years focusing on DCIS, since it has only become a diagnosis since mammograms came on the scene (approximately 1989, according to the surgeon), they don't have a lot of filtered research. Meaning, that they haven't taken the time yet to determine if women with my low stage of cancer would do just as well without hormone therapy and without radiation as someone who has a more complex grade of DCIS. Those studies are yet to come. In the meantime, you have to look at what's out there and make decisions and the surgeon says it's really tough to know how much is just enough but not too much. Considering my mother was diagnosed at 55, a little more than one year older than me and with an invasive cancer (she had node involvement), and that my maternal grandmother had uterine cancer and her sisters had female-related cancers, I've requested a genetics counselor follow-up, which I'll set up when the dust settles.

Otherwise, David and I are very encouraged that we are very very lucky and in good hands! My angel is watching over me once again! Thanks, as always, for caring and being wonderful family and friends. It makes it so much easier to have those you trust and care about to share these moments with.

Love, Jo Ann

Catching Up - September 9 - 17

It's been a whirlwind week. Between trying to sell our house, keeping our house spic and span on a daily basis just in case someone wants to see the house, maintaining our busy job responsibilities, and living through this diagnosis, it's been draining.

On Monday, September 15, I had the breast MRI. At first, the tech looked at my zaftig rear and wasn't sure it would fit in the closed MRI, but I proved her wrong...with even room to spare! I can finally appreciate what back pain is after laying like a lox in a very awkward position for 35 minutes. Imagine are on your belly with your breasts hanging through holes in the table. Your head is turned and smashed flat against the table with a small pillow for minimal cushioning. Your arms are straight ahead and your knees are slightly bent with legs elevated on a pillow to keep your breasts hanging as low as possible. Add the loud sounds associated with the MRI with the heat it produces along with a radioactive substance coursing through your veins, it isn't exactly like sipping Mai Tais with little umbrellas on a beautiful beach!

Yesterday, September 16, I had a meltdown while talking with Carol on the phone. No matter how old I am, there are just times when I really miss my mother and wish I were a young child again so that she can take my life over and make it all better. With all the support, there is still that missing link, and no way to bring it back. As a result, the tears just started flowing and flowing. It was the cry that I had been holding back since diagnosis day. Poor Carol bore the brunt of that one, but it was "safe" to cry with her and she understood. Afterwards, I felt much better and legitimately tired. Sleep came fast.

And so it's been 2 days since the MRI and the results are not back yet after being told they'd be ready, and I would be called. It's so maddening!
Off to bed...

2 Days after Diagnosis

Most of the evening of the day of diagnosis was spent combing the Internet for treatment recommendations. The most common treatment was lumpectomy with radiation and Tamoxifen (if the tumor was estrogen receptor + or progesterone receptor +). The radiation kills rogue cells, and the Tamoxifen works to block the regeneration of new cancer cells, by blocking the ability to absorb female hormones, their "food" source. Essentially, the Tamoxifen puts you into a menopausal state, which believe it or not, at age 53, I would happily welcome! Imagine buying female products with my GRAY hair. In fact, I pretend they're for my daughters...hahah.

The best part of the day was knowing that Rachel was coming to spend the weekend with us. I knew she would keep me busy. The more I thought and the cancer, the worse I viewed my future. So on Friday night, we talked a bit about the cancer. But on Saturday, we had a day where there was not a waking minute to think about anything but having fun. We went out to breakfast, went to a morning movie, went shopping for a gift, went back to the movies again, and ended the day going to a family affair for the entire evening! It was wonderful not to dwell on the big black cloud.

On Sunday, 2 days post-diagnosis, we went to the annual bichon frise dog bash in Hayfield, Virginia. The joy of watching 200+ bichons (see the picture if you won't know what a bichon frise looks like) running off-lead in a controlled fenced portion of the park was beyond words. Our sweet dogs, Daisy and Giovanni blended right in, and it was a fun day talking about the dogs with like-minded owners, who didn't think we were nuts to be so in love with our pets. In fact, Daisy and Giovanni, as lap dogs, have been a wonderful source of comfort.
On Monday...David and I were scheduled to the see the breast surgeon...more later.

The Beginning...Last Installment

I was emotionally drained after talking with my family, but knew that my father had been waiting for the results. We don't have a particularly close relationship, but since my mother died, I have taken on a lot of responsibilities in regard to his bill payment and medication management. His reaction was benign, and because he is not a nurturing person, I had no expectations that he would be particularly concerned about how I might be taking the news. Even though cognitively I knew he would react this way, it still hurt emotionally, because I simply cannot fathom how a parent would not be overtly concerned about a sick child.

My brother, the pathologist, was the next phone call. He has always been matter of fact, not particularly tactful, and always eager to show you how smart he is. With his photographic memory, I'm happy to have him on my side to interpret information. However, if I were looking to him for comforting support, I'd be in a heap of trouble. His comments to me were "You've passed the surveillance, which you knew you'd had a 30-80% risk due to Mom. So now it's time for you to lop off both your breasts and get a reconstruction. They'll tatoo nice nipples on you too." Nope, this was NOT what I wanted to hear at that moment of time, and after I advised him of the same, and stewed a bit, knowing that I should have expected that insensitive comment, I moved on to call my friends.

It was only the week before that one of the "people" in the group of friends I had hung out with over the years, had a serious health problem. One of the husbands (56 yo) had a heart attack, but after a stent and some rest, he was doing great. I was really the first one to have the big C. Being young (I still consider 53, as young, and so do the breast cancer statistics), no one wants to think we could be hit with anything of a serious nature. After all, we don't feel old. Sometimes, I act and feel like I'm a child, as my family can attest, so surely I shouldn't be experiencing anything as serious as cancer at my age!

One of the positive outcomes of this experience has been that some people I knew in my past (relationships and jobs) have stepped forward, after finding out about my diagnosis through mutual friends, and have called me and sent beautiful supportive emails, chockful of positive thoughts; each reminding me that my world is really much larger than I thought, and the power of their prayers and their kindness will go a long way in helping me beat this challenge.

My college roommate, Lynn, who lost her Mom to breast cancer, one month after my mom died of breast cancer, has been particularly active in Breast Cancer Organizations and fund-raising. She has been a rock of support as I continue to wait for results and my surgery.

Today's Lessons Learned: Love and friendship cannot be purchased with insurance, even with the best possible plan. It is something that is built and nurtured, and if this blog does nothing else, it should remind everyone reading that you should remember to keep that friendship garden nourished and growing.

The Beginning Continued

The next call was to my children. I am very lucky that my daughters have also become friends as they've blossomed into adults. Carol, the oldest and now living in Chicago, has always been pragmatic, ready to tackle any challenge put in her path. Rachel, the youngest who lives an hour away, has always been the comical child. The one that couldn't sit at the dinner table without doing somersaults on her chair, hanging with her head down, just to get a rise out of us. She is also very sensitive, a little more anxious than Carol, and always seeking answers, even if they don't exist. Both girls (aren't they always going to be my little girls?) are smart and beautiful (doesn't every parent say that too?), but most of all they are caring and loving, and as a family, we have always been very close. That's why I knew these calls were going to be the worst.

I had told the girls about the need for a biopsy and the facts that 80% of the time, biopsies are negative. That didn't quell their fears. They had friends who had lost their mothers to breast cancer, had experienced my mom dying from breast cancer, and they were frightened! Carol called me early the day after the biopsy to find out if the results were back. I promised I would call as soon as I had heard. So, now I had to call her and frankly, I was scared to death. She was the easy call, because I knew she would take the information, synthesize it quickly, and ever the planner, would ask for the next steps. No doubt, she was shaken to the core. I could hear the trembling in her voice, and, as a mother, I could never stand my children to be sad. After all, aren't we only as happy as our saddest child? Here I was struggling with my emotions, as well as my family.

Carol had just moved back to Chicago a few weeks before to return to the University of Chicago for her MBA. She was so excited, and I didn't want to put a damper on this very exciting time in her life. She felt torn, and asked if she should come home. I told her she was being ridiculous, but it was a sweet gesture, and I was touched. I knew if I said yes, she would have been on the next plane.

With a promise that I would call her back later, I called Rachel. Rachel had just graduated from Cornell University with her Masters in Engineering (I'm such a proud mama), and had been working at her first "real" job for only three weeks. She had recently moved to Northern Virginia, and was having a blast with her friends, her job, her apartment and her social life. It doesn't get better than that! And here comes Mom, to put a big hole in the happy balloon. As expected, Rachel was full of questions and only wanted to hear positive information. more later....

Monday, September 15, 2008

The Beginning

There is always a beginning to every story, a prequel, and multiple epilogues. This is my story, dedicated to my wonderful family, my support and anchor - my dear sweet husband and best friend of 31 years, David, and my two beautiful daughters, Rachel (24) and Carol (27).

On Friday, September 5, 2008, my world was rocked. I received the diagnosis I had been dreading ever since my own mother was diagnosed with breast cancer 25 years ago: DCIS Left Breast, .3 cm, Grade 1, micropapillary.

Should I say I was surprised? Not really. After I saw the mammogram that led to the additional mammograms, ultrasound, and stereotactic biopsy, all in the same week, I saw the "explosion of the microcalcifications". This mammogram seemed to match the mammograms with the same diagnosis on the Internet.

When the radiologist shared the news, very tactfully, and in a kind way, I was numb. My body started to shake, and the tears welled in my eyes. Luckily for me, I was in my work office, and the door was closed. I could be emotional in the privacy I so desperately needed.

My first reaction was to go online and look up everything he said on one of the great breast cancer websites I had found earlier in the week. The pathology was clearly explained ( Then when I felt I was armed with the answers that I knew my family would seek, I called my husband.

David, as expected, was very sad. He assured me that "we" would do what needed to be done to get well again. He was definitely part of the team. For years, I had asked him what he would do if I lost a breast like my mom. And for years, he replied that nothing was more important than my health, and whatever needed to be done should and would be done. After all, as partners for 31 years, we had made a pact that we would love each other for better or for worse, in sickness and in health. He's the kind of guy that would never break a promise, nor reneg on a contract. But, in truth, we are still in love with each other, have a lot of fun together, and after all these years, still "like" each other too. He is the one constant that I know will always be my side no matter where this journey takes me.