Rough Year Ahead but Well Worth It!

I had a very busy week this week. Went to see Dr. Hantel, Naperville Oncologist on Monday 12-12-11. Vicki took me shopping for new clothes and got several outfits for the holiday season and beyond. Julie took me to get my 2 bottom wisdom teeth pulled on Friday in Oswego as that was the only opening they had for the remainder of 2011. Laura & Adam went out and got me an Oberweis chocolate milk shake which I enjoyed 10 spoonfuls then didn't enjoy it coming back up on me. Ron was out of town Thur-Sat evening. I had to suffer with my teeth without him as I was getting sick most of that Friday evening. Saturday I was much better and able to keep soup down. Today my teeth hurt but very tolerable. On Wed, my one wisdom tooth that was bothering me since October, cracked. So the oral surgeon had to fit me in before Jan. The doctors didn't want the teeth pulled before my mastectomy surgeries, so now was the best time. Could I fit any thing else into my healing time.

Dr. Hantel did NOT have very good news for me. My treatment will be as follows: Starting Jan 4th, I start chemo with the drugs Taxol and Herceptin for 12 weeks once a week thru a port they will have to insert the end of Dec. Then for 9 months, I will continue with Herceptin every 3 weeks til the end of the year. For 5 years following these treatments, I will get hormone therapy in a pill form. These treatments will be done at Edwards Naperville Cancer Center.

The chemo should be tolerable with a long list of side effects. The herceptin's side effect is mainly heart problems which I will be getting an echo cardiogram every 2-3 months and monitored closely. Once I discontinue taking the drugs, the side effects will go away and won't be lasting problems.

Dr. Hantel said that my pathology results were very rare (as I already knew I was SPECIAL) with estrogen & progesterone positive and the HER2 positive with a high over expressed number of 5. He said that this year maybe 4 patients in 350 had triple positive bio-markers. My HER2 positive meant that the cancer cells were dividing 5 times rather than dividing twice. This is one of the reasons the cancer grew sooo fast and so much with 50% of my breast cancerous in 10 months. He wants to block any further cells that had escaped through the bloodstream from dividing & multipling. The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. If the cells are unable to divide, they die. Chemo is most effective at killing cells that are rapidly dividing. Chemo doesn't know the difference between cancer cells and normal cells. The normal cells will grow back and be healthy but resulting in low blood counts, mouth sores, nausea, hair loss, etc during the process. I am amazed to think that Taxol/Herceptin will be able to shine their light into all the dark corners where the possible cancer cells might be lurking.

It will be a rough 2012 ahead but my odds will be well worth it. Right now they are saying that I have a 20% chance that some kind of cancer will pop up in the next 5 years. But if I follow their treatment plan of chemo, herceptin, and hormone therapy, I will have a 98.5% chance that I would be free and clear for 5 years. Those are better odds than being on the pill. I can live with those odds as I feel it will be well worth it to see our children get married and have children of their own.

So I told Ron that 12-12-12 I should be almost done with treatments...so I am marking that day as a close to graduation day and hoping there will be no interruption of treatments, such as sickness, white blood counts low etc. I will NOT be able to be around anyone that is sick or on the verge of sickness. PLEASE keep that in mind before visiting.

We are thanking God for all the women who have undergone studies/trials before me that resulted in the researchers/doctors to find these drugs (taxol & herceptin) and that they exist for me and others. The doctors are able to tell me ahead of time what to look for and follow up on and have drugs to help me bear through the treatments. All because of these women. I admire the women who went before me and fought a long hard battle and lost and for those that continue to fight. I know I am not alone in this fight and that there are sooo many others that have it much much worse than me. I am so thankful that I found the lumps when I did. It could have been a much different situation down the line.

Ron said he may want to see me as a blond. Any thoughts???

Thanks for the meals and cards. They have been a godsend. In January Ron will start traveling again, so check in on me. Thankfully, Lauren and Scott have really stepped up their visiting schedules. It gets lonely now that it is the two of us.

I hope you all have a very Merry and Blessed Christmas. God Bless you and your families.

Love, Joan

"Moving On" Celebration

Moving On Ceremony....In Naperville schools, the kids celebrate graduating from 8th grade and going into high school with a "Moving On" ceremony at school. Well I guess I can say that I am celebrating my "Moving On" day today. I have graduated from the Mastectomy Doctors to the Oncology Doctors. The kids celebrate with parties. I am older and wiser now and have decided that this day needs some reflection. So I hope none of you mind, I have a few thoughts I would like to share with you. Maybe this should be titled: "Dear Diary". Hold on to a few kleenex....

My mom taught her children that "It is more blessed to give than to receive". That is how I modeled my life through my good catholic upbringing, . I was never comfortable receiving compliments, gifts, etc. I only felt fulfilled to give of myself to others, help on mission trips, share with whatever I could...that is how all my sisters and brothers lived their lives. I witnessed that catholic guilt if something good came my way that I didn't deserve. We will get back to this thought..........

I have experienced an intense need to be by a loved one's side when they had a tragic accident, loss, illness and heartbreak. I needed to be right there beside them no matter how far I had to travel. I HAD to see them physically, to touch their hand, to see their face, to make them know that they made my life better. Well, this past month, I have a new insight as to how it feels to be on the other end of that experience. My awareness level is off the charts with how to receive that love. I have been way out of my comfort zone and have had to learn to accept love in a way that I have never fully experienced in my whole life. I believe it is more important at certain times in your life that "It is more blessed to receive graciously than to give". My heart and mind has opened up to a new level of the meaning of LOVE. MY heart and soul is sooo much larger bringing "your gift of love" into it than it is in "giving of myself". Does that make sense? Maybe the giving was getting too much routine that it was diminished. I don't know. But, what I do know, is that I can finally accept all the love that is coming my way from all corners (Japan, Ireland, China, Florida, California, Phoenix, New York, Kentucky, Virginia, Massachusetts) without guilt. Thank you Peg, Kathy and Colleen for coming from a distance to be by my side. I can actually say that all this reflection started the day of the Prayer Meeting and how it was such a sacred event in my life. I have finally given myself permission to accept compliments, kindness, assistance, dinners and yes gifts. I AM A BETTER PERSON BECAUSE OF EACH AND EVERY ONE OF YOU. And like I said, there are no words to explain how I feel, but maybe a little window into how I feel and graciously accept all that you have done for me this past month and to come. My family and friends are just sooo amazing and I am one lucky person to have been part of your lives.

It must be my hormones....OK now to the lighter side...

I met with Dr. Song and Dr. Jaskowiak this morning. I had three drains removed by Dr. Song and I am now free and clear to sleep on my side and get a good shower in. As for Dr. J...she explained all my test results and made a point to tell me that I am not finished with her and that we will have at least a 5 year relationship. I thanked her for "personally" making the phone call to me to give me the results and I swear there was a tear in her eye and I started to cry. Going to University of Chicago has been one of the best decisions in my life and I am thankful to Teri, Debbie and Suzanne for making this possible. We got this breast cancer early and I am considered a Stage 1. The future treatment is unknown at this point. I have a few oncologists that I need to talk to but have no definite appointments yet but plan on wrapping those appointments up by year-end. Remember to listen to your body for any kinds of signals. I know I have gotten three people into their doctors office that have not wanted to go for a few years.

So for today it is MY "Moving On" day and will celebrate with a glass of wine and some great dinner some one dropped by while I was napping. Thank you for all those prayers and wonderful messages.

I LOVE YOU.

Joanie

A Conundrum....And not referring to my favorite white wine!!!

Last night Dr. J. called me with good news and some not so good news. First the good news, I have clean margins...YEAH.


Now the "Conundrum" as Dr. J. told us may happen when the HER2 tests come back. I am HER2 positive with a score of 5.0. The doctors would have like the 2.2 scale better, but I am a big personality and of course my results come back as "amplified or over expressed". This brings us to a very difficult decision that will definitely involve more than one oncologists opinion. 


On Thursday, the doctors round tabled my case with all the test results. There were 3 oncologists in the room: one said I needed chemo with hormonal therapy, one said that I could just take the drug herceptin (an immune treatment) with hormone therapy, and the third person said that he/she will have to do more research....so now you know the Conundrum. It is very confusing and I don't know really what they are all talking about because I have not done my research this far into the cancer and was hoping I would not have to. But reality is we know that I will interview quite a few doctors and weigh the risks, benefits, and toll it will take on my body. The good news is that this herceptin is a tolerable drug.


I know there are many questions as to what is this HER2. HER2 (Human Epidermal Growth Factor Receptor 2) is a gene/protein that sends signals to your cells to tell them grow, divide and repair. A healthy breast cell has 2 copies of HER2 gene, but some kinds of breast cancer probably get started when a breast cell has more than 2 copies of this gene, and those copies start over-producing the HER2 protein. And therefore, the affected cells grow and divide too quickly and create the cancer. This amplified protein occurs in many kinds of cancers as well. And the reason you do any treatment is that the HER2 cancer cells may have spread beyond the tumors.


We are very mixed with the results and have no idea what direction we will be heading toward, but we do feel upbeat and positive as I have all along this journey. This, by all means, is not devastating news. As always, we are soo blessed.


On Monday I am going to have post-op visits with Dr. J. and Dr. Song. Probably learn more from them at that time as well.


Everyone have a great weekend. I may even be seen out and about on Saturday nite.


"Life is like a mirror, we get the best results when we smile at it." unknown


Joanie

All is Well...

This Monday I went back to the University of Chicago to have a procedure in which Dr. J. opened up my flap and scraped along my skin to retrieve a tissue sample for the pathologist to determine (clean margin) that the doctors got all the cancer. The operation took only an hour and recovery about another hour or two. I woke up without feeling sick to my stomach and felt really really good with no pain. Those results should be available to me on Monday for my follow-up appointments.

Prior to surgery, I ask Dr. J. if she had anymore bio-marker test results. She stepped out for a few minutes and came back with 2 more results.  My estrogen receptor is positive and my progesterone receptor is also positive. Estrogen receptors are special protein that the hormone estrogen binds to. Breast cancer cells that are estrogen positive depend on the estrogen to grow the tumors. This means that my body uses the estrogen to fuel the tumors growth. (I must have great estrogen cuz those nasty tumors grew really fast and multiplied quickly with over 50% of my breast infected with the cancer.) Now science/research steps in and studies the fact that the cancer cells need some fuel (estrogen) to exist so why not block the fuel. Hormone therapy blocks the receptors or reduces the amount of estrogen that can get into the receptors and, as a result, cancer cells may shrink or die. This fact is important because it affects which kind of treatment would work best for me and that my body should respond well to hormone suppression treatments such as tamoxifen. THIS IS ALL EXCELLENT NEWS. The doctors are not ruling out any other treatments but for now they know that I should have hormone suppression treatments. I have not received the results from the HER2 bio-marker. They send those tests to New York for typing.

After receiving the test results, Ron, my sister Peg, and I started to cry with joy. It is a big relief to know that I may dodge radiation and possibly chemo. We may be jumping the gun a bit, but for now that is the hope I am hanging my hat on. The real picture will be when we get the results of the HER2 receptors. That is when the oncologists will have the complete picture and will recommend treatments. 

I am going up and down stairs like a champ. Still having a difficult time getting out of bed, (no physically getting out of bed), showering and getting dressed. I got to say I am doing very well and I even surprise myself. Yesterday Ron and I took a field trip to Home Depot and Menards. That was great cuz the sun was shining and it felt so good to get out of the house. Now I know about how much walking I can do and will be up for any little jaunts in the future.

Thank you all for your love.

Joanie