Pinktober and Mammogram

It's that time of the year where we are all surrounded in pink.  You just can't get away from it.  So if you haven't taken the time to get your mammogram this year, think pink, and make that appointment.  Early surveillance, in most case, yields a longer life!

Today was mammogram day.  I dread it.  It was particularly worrisome since, during the annual GYN visit, the doctor was concerned about a hardened area in my radiated breast.  But...GREAT NEWS!!!  All is well.  There are no changes from last year, and I can wait another full year before another mammogram.  Kudos to Tamoxifen and all its nasty side effects.  Three years out and I'm cancer-free!

May next year bring me continued good news...  Happy Pinktober everyone!

Today's Oncology Visit

All is well. The blood work was perfect. The only thing the oncologist mentioned was that because my December surgery for the breast duct excision showed that the tissue was atypical, usually a precursor to cancer, but not a surprise since they already found cancer in the breast, that the breast will need to be watched closely - every 6 month visits with her and yearly mammograms. She feels strongly that the Tamoxifen will prevent a further recurrence and that the five years will cover a lifetime, based on research. I'm lucky since I tolerate Tamoxifen well. So I feel quite blessed today and grateful for good medical care.

Dogtors

It's a funny thing about dogs. They sniff out healthcare problems. They are dogtors for sure. Two days ago, my dogs started sniffing my breast, trying to get under my clothes. They became agitated when they went near me, and would not leave me alone.

If you remember, I have had drainage from my left nipple almost ever since the surgery. It didn't seem to change, but my sixth sense and my dogs response to me, prompted me to call the surgeon's office. I went this morning, and she told me I had a small infection, most likely from the sutures they used. She ordered an ultrasound, which if it had shown a pocket called a seroma of fluid, she would drain it to help the healing. However, the ultrasound only showed small undrainable pockets of fluid. I am now on an antibiotic for a week, neosporin to the wound, and nursing pads to catch it all.

I go back next week for a follow-up. Until then...

I'm Starting to "Look" Normal Again

For a while, my breast was looking like a Picasso print. Finally, the steri-strips peeled off, the incision site along the side of my nipple and areola look normal again. I can actually look at my mini-me breast and it looks like a part of my body again.

Not sure if I've addressed this yet, but my cancer breast is now quite a bit smaller than my other breast. It really bothered me when I realized how much tissue had been removed from the cancer breast resulting in its new size, but then again, I was grateful to have a breast at all.

With a bra on, it appears normal. Couple that with my usual fashion style of twin set sweaters, the size difference can definitely be hidden; at least, from my perception.

Nipple Bleeding 14 Months Later

A few weeks ago, I noticed a small blood stain and thought maybe it was from our sweet bichon, Daisy, who had had surgery for torn knee ligaments. A week later, I noticed a similar stain in my bra and on my nightgown in the area of my nipple.

Noticing a dark area at the entrance of one of my nipple holes in the breast where I had been diagnosed with breast cancer last year, I expressed my nipple and out came bloody discharge. Panic was probably the first reaction. This has been a difficult health year up to now, and quite frankly, I don't have the mental energy to handle another crisis.

As soon as I could, I did contact the breast surgeon's office and was sent for an ultrasound of the breast as well as another mammogram. This was a follow-up to a very successful yearly mammogram only 2 months ago. The test results showed that nothing changed. So I am really no more knowledgeable of what is causing the problem as I was before the test.

Per the physician, it could be caused by one of 2 things: papilloma (benign wart-like growth) causing distended breast ducts that bleed or cancer. Usually the papilloma would show on the ultrasound, but it may have been so small it didn't display on my test. So the plan is to remove all the offending ducts and send them to pathology on December 14. I'm very comfortable with this decision, and will have an answer regarding the cause when I go back for my surgical follow-up.

The question then becomes how can DCIS come back so soon since it takes 15-20 years to develop? My understanding is that it may have been there all along, but not been diagnostically visible.

Finally, there are 2 ways to view...if the bleeding is caused by papilloma, the surgery will remove the cause and all will go back to the way it was. If the bleeding is caused by cancer, then I was very lucky to have symptoms to look at this further since diagnostically nothing showed on the tests.

I'll be sure to update as soon as I know more. Happy Holidays to all!

One Year Later ... More Surprises!

Hooray! I survived the first year of survivorship, the last few months being so easy, it was as if I never had any problems. My scar is almost translucent, and all the skin problems from radiation are gone. While going through it, I never thought it would end, but as always, tincture of time cures most of the little things in life.

So one year later, on the anniversary day of my diagnosis, I was in for another surprise. We had gone out to dinner to celebrate, and it was time to go to sleep when I started to get a tummy ache. It started to feel like there was a pump in my tummy being blown up. The pain went into my back and I couldn't get comfortable. This unrelenting pain went on and on, and after 2 hours, I told hubby that we needed to go to an emergency room. Of course, the first thought through my mind was that I had liver mets and my life was over...talk about making a mountain out of a molehill?

So we went to GBMC, where the cancer treatment took place, and I was triaged to wait nearly 7 hours in the waiting room and before I saw a physician. Rule 1: Never get sick on a holiday weekend...even though illness happens 24/7, hospitals still celebrate holidays with skeletal crews. During the time I wait, I finally fell asleep (probably my body's way to deal with the pain) after 4 hours of this awful discomfort. When I woke up, the pain was gone, but I felt we should still see why it happened since it was so unusual.

Turns out I had gallstones that I didn't know about, and one of them had dropped into the common bile duct that passes by the pancreas and blocked the pancreas as well as the bile duct. As a result, pancreatic enzymes used in the metabolism of foods and bile were unable to get to their destinations. This created havoc with my lab values, and I was diagnosed with acute pancreatitis.

Luckily, being a nurse has its privileges. I got absolutely fabulous care, and all the nurses were super friendly and supportive. After 5 days of rest, hydration, and a procedure to roto-rooter my bile duct and put a slit in it to prevent further stones from blocking it, I was sent home. The next step is gallbladder removal, which will happen tomorrow.

If you're reading this today, say a little prayer for me tonight. I really hope this is the end of illness for me for a LONG time.

Just When You Think Your Head is on Straight...

This week has been a rough one from an emotional point of view. I was thinking I was really settled about the breast cancer impact on my life, and then a woman my age in my community, with children who are the same age and friends of my children, dies of breast cancer. She and I were acquaintances. We would always say hello and make small talk when we bumped into each other, but her death threw me for a loop.

Combining that with other stressors, I started to sob last night...for two hours. I couldn't stop crying. Poor David did not know what to do to comfort me. My dogs climbed on my lap and licked my tears. I was inconsolable, and finally, the last drop fell, and I was totally drained, exhausted, and feeling like some of the pent-up angst that has been following me since my diagnosis last September was gone. Cathartic for sure, but also for sure to happen again.

I HATE this disease. It robs families and communities and steals your courage. It takes your free spirit away with the worry that this "beast" is lurking somewhere.

Climbing Over the Mountain

Last night, I went to the Hopewell Cancer Center Support Group after a brief hiatus, and noticed how very far I have come from an emotional perspective. There really is another side to the mountain, and I am seeing the world in a much happier and positive way.

Ten months ago, my world seemed pretty bleak, particularly, since I couldn't take my thoughts away from my mother's death, and wondering if that was going to be my demise from this beastly disease. I fretted that I was never going to see my daughters married or grandchildren or live to enjoy the retirement, we have carefully saved for. The future did not look very positive at the time.

Today, while I think about the cancer, it's not an every day, every hour focus of life. It happened. It was treated. It continues to be treated with Tamoxifen. It's the best it can be. Like I said in the last blog, I'm looking at it as a message to reevaluate my life and appreciate what is most important.

I have been so lucky - terrific and loving husband, wonderful daughters, adorable dogs, great friends, and life's comforts. I am blessed.

Looking Back - 9 Months Later

Most of the past nine months has been a whir of activity, primarily focusing on breast cancer - diagnosis, treatment, side effects, and survivorship. Only now am I starting to see the forest through the trees, but there are certainly many lessons I have learned along the way.

My daughter commented recently that my point of view on what is important in life has definitely changed since my diagnosis. She is pleased to see that I am focusing less on work, and more on taking care of myself. That I am focusing less on taking care of everyone else, and treating myself better in the process. These are things that I have always strived for, but could never justify in the past. Why does a cancer diagnosis finally justify it? Why did I ever have to justify focusing on myself?

Here I am, the nurse, the caregiver, the family anchor, the daughter who looks after her ailing father taking care of his bills, his medications, and listening to his daily "organ" recital, the daughter-in-law, who worries as her aging deaf 95 year old father-in-law lives day-to-day in an assisted living facility, the wife who worries that her husband's 4 hour commute each day is too stressful, making him tired and unable to do the things he used to do, the mother who worries that her daughters, now in the work force, are spending way too much working and not enough time playing. How can I blame them, they learned from the best ;->.

My daughter also commented that my life history has been filled with little "bumps" that have made me stop for moment and take notice of my choices. So that while cancer is not something I would have ever wished for, it did make me stop, take notice, and make decisions to change the course of my life in a positive way. I have learned to take the lemons and make lemonade.

Radiation After Effects

So it's now 5 months post-radiation treatment. If you recall, when the treatment ended at the end of December 2008, I experienced a folliculitis of the treated skin area that took nearly 2 months to resolve. The dermatologist tried 3 different approaches to resolve it, including a biopsy (just showed inflammation and nothing else), and finally it went away when all three medications (topical antibiotic, steroid cream, anti-fungal cream) were applied.

Fast forward to this week... My affected breast is very warm to the touch, still pink, and painful at the boost site area as well as under my armpit where it feels swollen at times, particularly in the morning when I swear I can feel the lymph nodes. The pain is becoming more constant, particularly after the breast has been touched. So I called the breast surgeon, whose nurse referred me back to the radiation oncologist, whose office arranged for a visit that day.

The radiation oncologist advised me that it was NOT cancer, but rather a hyperreaction to the radiation treatment which occurs in 1-2% of all people who receive radiation (aren't I the lucky one?). He recommended 2 courses of treatment -heavy steroids (8 weeks) which would provide optimal results or Motrin 800 mg three times a day for 3 weeks. I made no treatment decision at the time of the visit because I think the treatment is a bit harsh to start out the gate with, and will follow up with him again in August since he says there is no harm in waiting it out a bit longer.

The day after that visit, I received a call from the radiation oncologist, who had done a bit more research, and recommended that I should try a short course of antibiotics for 10 days to make sure that the inflammation is not bacterial in nature. He ordered a broad spectrum antibiotic. If it improves the situation, I'm to see him at his office. If not, I'll give him a call to advise.

Now...with my 20/20 hindsight, maybe I shouldn't have done the radiation, but then I wouldn't have done the full battle plan and would have more about the cancer returning. Too late now to speculate about what could have been.

Psychological Support

Last weekend, David and I participated in the Hopewell Cancer Center's Annual Fundraising Walk and Run. It was joyous to see my new Hopewell friends with their families and to see some of my old treatment buddies, now being active and looking healthy!

The Hopewell Center has really been a terrific place for me. It is a non-affiliated non-profit grass roots organization that provides supportive services to anyone with cancer. Services are all free of charge, and they rely entirely on donations. They recently purchased an old comfy home where their meetings take place and built a barn on the property for their spiritual classes in yoga.

Every other Monday night, they have a Breast Cancer Support Group. Last night, I went for the second time. The women change each visit, because it is a networking group, and attendance is not mandatory. It's so inspirational and freeing to talk about the cancer and learn from others' experiences, fears, etc. And it's not all cancer either...it's the fallout from the experience that is discussed as well. I highly recommend this type of activity for support.

Last Thursday, I also started weekly support group sessions at the Hopewell Center. This includes people in all stages of cancer with all types of cancer. Again, another opportunity to talk freely about cancer and never worry that someone will run away from you because you have that need. The reality is that none of us who have been through this want to burden others who have not with all the details, but sometimes there is a personal need to do just that. The weekly group is diverse, but we all connected. This will definitely be helpful for me.

If my Mom had not had breast cancer and died from it when we thought she was cured, I don't think I'd be so fixated...but it is what it is and I have to live my life with that knowledge. I feel certain that these groups will help me get over the psychological hump. How lucky I am to live in a community with so many fabulous resources!

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.

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!

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.

So...it 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.

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.

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!

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 boyfriend...you 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.

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 this...you 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...