Post-Opt Appointments & Cardiologist

Now that chemo is over, my life has begun revolving around doctor appointments for my upcoming surgery.  I tested positive for the BRCA1 gene, which means I carry a genetic mutation that caused me to get breast cancer.  This mutation means I'm missing 11 genes in my body that carry tumor suppressor proteins.  Because I carry this gene, I am at high risk to develop ovarian cancer as well.  So, when I'm done with my breast cancer battle, I will also have to have surgery to have my ovaries removed.  Since I tested positive for the gene, my chances of having a recurrence of breast cancer in my current non-breast cancer side (the right) are very high.  Therefore, I will be have a complete bilateral mastectomy (both sides) on April 10, 2014.  This is the best plan to try to prevent a future case of breast cancer. 

I expected to get a break from doctor appointments and running to Columbus so often after I completed chemo, but I believe I've actually had to make more trips.  I've had to have several tests preparing for my upcoming surgery to include a follow up MRI and Echocardiogram.  The MRI showed the tumor has shrunk from its original size of 8 cm to smaller than a pea.  The Echo showed some heart damage from the chemo.  I was told this was not of a huge concern as it was "minimal".  However, while at my pre-op appointment Wednesday, they were unable to get a normal EKG.  Since they could not obtain a normal EKG, I am required to see a cardiologist on April 4, 2014.  This is necessary because without the clearance of a cardiologist, the anesthesiologist can refuse to put me under on the day of my surgery since my echo showed known damage as well as multiple abnormal EKG's.  So, I'm praying for good results on the 4th and some healing to my heart (don't we all need that), so I can safely have my surgery.  

At my pre-op appointment, my surgical oncologist confirmed he would no longer need to take the large patch of skin at the top of my breast like he had first thought.  The MRI revealed the tumor was beneath breast tissue and my pectoral muscle rather than directly against my skin as he first thought.  A section of my pectoral muscle will need to be removed during surgery because of this.  A mesh material derived from human and animal materials will be used to patch up my pectoral muscle.  He confirmed both sides would be taken for surgery, and I was prepped on what to expect after surgery.  

My reconstructive surgeon confirmed he would place expanders in my breasts after my mastectomy was complete.  These will be filled as much as possible based on the amount of room left after the surgery and the incision across each of my breasts are closed.  I will return to his office after the second week to have them filled, and subsequently each week until we reach the appropriate size--about a month.  I then will have another surgery to exchange the expanders for the appropriate size implants.  My size will be based on how far he is able to expand me comfortably and safely during the one month period as we cannot take too long for expansion.  I must begin radiation, and I have to have the exchange surgery completed prior to radiation.  

As far as I know at this time, my plan for radiation is 6 weeks.  I will have radiation every day (Monday through Friday) during this 6 weeks in Columbus.  Obviously this will be an obscene amount of driving.  I am on a waiting list for a living area I can stay in during the week for treatments for this 6 weeks.  Once radiation is complete and provided there are no complications, I will then be done with my breast cancer "journey".  

One of my biggest fears is a recurrence within some other location in my body because I did have lymph node involvement.  Cancer was found in 5 out of 15 of my lymph nodes when my sentinal node biopsy was done.  This puts me at risk for future metastisized cancer if my lymph system spread the cancer cells anywhere else in my body before it was caught.  I pray daily it was caught and removed before it could be spread elsewhere.  My second biggest fear is having gone through this to only face it again one day.  However, my biggest fear of all is the chances my children have of carrying the BRCA1 gene since it's genetic.  They each face a 50% chance of having the gene.  My son, 22, and my oldest daughter, 19, were tested yesterday along with my sister to see if they carry the gene.  My 16 year old daughter cannot be tested until she is 18.  I pray my children and sisters are negative.  This is one journey I do not want company on.  I do not want to think about my children possibly having to face this as well.  

My surgery is quickly approaching.  It's only a week and 6 days away.  I'm getting pretty nervous about the surgery itself and just facing what's ahead of me.  I have a difficult time dealing with the unknown, so the closer it gets, the more nervous I get.  Say a little prayer for peace of mine as my surgery approaches.  

Pre-Surgery Worries

I am one week and four days outside of my last and final chemo treatment.  I still don't feel 100% back to normal, but I am slowly recovering from it.  Each AC treatment I had seemed to take a little longer to exit my system.  I found each time I had less good days prior to getting another treatment as they progressed.  After my third treatment, I didn't have a true GOOD day until Thursday, the day before my final treatment.  So, I'm not surprised I'm still struggling.  I figure it will be this weekend or even Monday before I get that good "clear" feeling.

When I say clear feeling, I am referring to how it feels when suddenly you don't feel sick to your stomach anymore, and the fog seems to lift from your brain.  Your energy level seems to double all at once, and you recognize yourself.  Since I've been getting chemo for six months, I cannot say this "good" feeling will last more than a day or so though.  I don't know what to expect right now.  I have several breast cancer sisters who tell me you still have your good and bad days months after chemo has ended.  I suppose it makes sense.  I've had six months of chemo pumped into my body.  It stands to reason it would take about that long for the side effects to slowly leave my body.  As a cancer patient, I can only say we WISH for it to just disappear quickly though.

I have a few weeks before my surgery date on April 10, 2014.  They are letting my body build up and recover from the chemo.  It's going to be here before I know it though.  I find myself more and more concerned about how it's going to go and just an overall sense of dread and worry.  I was never much of a worrier until I was diagnosed with breast cancer.  Now I suddenly worry about everything.  My surgical oncologist called me on Sunday to discuss me testing positive for the BRCA1 gene.  As I suspected, this may alter their original plan for my upcoming surgery, which was to take the left, breast cancer side only, proceed with reconstruction, then on to radiation.  Once radiation was complete (after about six months), I would have a second surgery to remove the right side and have reconstruction.  However, being positive means removing the right side is no longer an option but a requirement.  Those who carry the BRCA1 gene have a very high rate of recurrence in any breast tissue available for a tumor to form.  Therefore, removing all available breast tissue before a tumor can form is the best form of treatment to stay ahead of a secondary breast cancer.

I've wanted both sides removed since the very beginning.  I've never felt comfortable leaving the right side as deep down I always felt I would be facing this again in a matter of time if I didn't remove the right side as well.  However, my doctor was reluctant to do this without just cause as it puts me at risk for infection after my initial surgery and can prolong my radiation, which we do not want since I had lymph node involvement.  Since I had lymph node involvement, I face the risk of the cancer later returning at another site in my body.  Typically, it's the bones, lungs, chest wall, and the like.  I've thought about what I will do in case this happens, and I have had to stop myself from thinking about it. This has been a tough battle, and it's not over yet.  I can't even imagine a second battle.

I often wonder what the future holds for me.  I compare myself to my Aunt, who was a breast cancer survivor for four years when it returned in her bones and claimed her life.  I know my fate is not that of my Aunt's, but it's almost impossible not to let those thoughts creep into my head.  We both had Triple Negative tumors, and we both carried the BRCA1 gene.  She too had lymph node involvement.  Everyone says to stay positive and not let negative thoughts such as these plague you as they only bring you down; but I ask, how does one NOT think about all this?  I don't think it's possible to consider your own mortality when faced with a life threatening disease that's as unpredictable as breast cancer.  No one really knows why someone who is staged as stage 4 with multiple lymph node involvement manages to be a survivor and live into their 80's while another who was initially staged as a 2 or 3 with minimal lymph node involvement ends up passing away from the cancer in a few short years.  They simply do not have answers to explain it.  So, not thinking about these things is truly impossible.  At least for me.

Yes, my tumor as responded very well to the chemo.  At this point, I can't feel it at all.  I am very thankful to God for that.  I have a MRI tomorrow to see how it compares to the MRI I had prior to chemo; and I'm praying they see nothing.  This would mean the chemo killed the entire tumor.  But there are no promises, guarantees, and what my doctor finds during surgery is up to God.  My tumor was very high up on my breast and sitting within my pectoral muscle; therefore, some of my muscle will need to be removed during surgery--along with a large patch of skin at the top of my breast.  This is a safety measure to try to prevent it from coming back.  No one really knows if the tumor was attached to my chest wall or anything within that general location.  With it being dead (as it would seem), we may never know.

As I've said in many other blogs I've typed, the not knowing is what is very hard for me.  I am a planner by nature, and cancer has taken away my ability to plan anything in my life.  Nothing is within my control anymore, and I truly am at the mercy of God.  I pray God sees fit to allow me many more years to be a mother to my children.  I would like to meet my grandchildren some day.  I used to say I never wanted to get old.  Now, I would love nothing more than to get old.

Chemo AC -- Dose 4 of 4: MY LAST CHEMO!!!

On March 7, 2014, I had my final dose of chemo.  Words cannot even begin to describe how good it felt to know this was the last time I was headed into the infusion center to be pumped full of poison.  The last time I stepped on the chemo roller coaster.  Don't get me wrong.  The chemo nurses were incredibly sweet to me, and I will miss each of them; but I will not miss being in that particular part of the building for the purpose of getting chemo.  None of it was an enjoyable experience, and I'm thrilled to be done with it.  Sure, it crosses my mind I could have a recurrent and have to do chemo all over again; but I refuse to let myself think about that right now.  For the moment, I'm focused on being done with chemo, and I'm celebrating the victory I have in front of me.  For once in my life, I'm not letting the "what if" of the future ruin the celebration I have right here and right now.

My sister, Cindy, drove me to chemo; and each of my children went as well.  My husband, Chuck, met us there to help celebrate.  A party of 6 trooping through the oncology and infusion center was quite a group; but we didn't care.  We were celebrating.  In addition, my friend, Missy Frechette, stopped by on her way out of town with a gift.  I received text from friends, family, and work family all day congratulating me on my final day of chemo.  The sun was shining brightly, and the temperatures were in the upper 50's for the first time all winter.  Even God was smiling on me and helping me celebrate such a fabulous occasion.  Below are the celebration photos from yesterday.

My daughter, Autumn, decorated the car so everyone knew on our way there and home what a fabulous day we were celebrating.  

 In case it's tough to read, it says "Today is my Last Chemo"

 Our Chemo Party Crew complete with the G-Rated and the R-Rated signs.  I am on lucky girl.

 Me and my daughter, Autumn.

 Me and my daughter, Makya.

 Me and my husband, Chuck.

 Me and my sister, Cindy.

 Me and my son, Scott.

Finally, my awesome work crew celebrating at my office.  I have a wonderful work family.  

They were able to get my IV started on the first try, which was a big YAHOO to end chemo.  I am so proud of myself for making it through 16 chemo treatments without a port.  That was one of my biggest goals from the day this nightmare began.  I did NOT want a port; and I am so proud I stuck with what I wanted and didn't cave into what others tried to convince me to do.  Thank God I have good veins and everything went fine as I realize not everyone is that fortunate.  

I met with my oncologist, and she gave me the clear all to receive my final chemo treatment.  We talked about me being positive for the BRACA1 gene.  She covered things I already knew; but hearing it from her solidified what I already knew:  My children were at risk and needed to be tested (each of them has a 50% chance of also carrying the gene), I will need to have my right breast removed in addition to my left breast as my chance for a secondary breast cancer in the opposite side are very high, after I am done with this breast cancer mess, I will need to have my ovaries removed as the BRACA1 gene is also known to cause ovarian cancer.  While none of these things are GOOD news, I have accepted them as part of my life, and I'm moving on from them.  I cannot do anything to change these things, so I am leaving them in God's hands.  Only he has the power to watch over my children and save them from this dreaded gene.  Only he has the power to watch over me and ensure this is the one and only time I face this dreaded disease and get to grow old to see my children grow up.  To meet my grand babies and spoil them rotten.  I have given it all up to God.  

After meeting with my oncologist, our crew headed over to the infusion area.  All the nurses were cheering as we walked in and celebrating with us before we even began.  I had purchased 50 small containers the size of a Carmex lip balm tub, and made homemade lip scrub.  I handed them out to all the nurses on the Oncology floor as well as the chemo nurses.  I see cupcakes and cookies on the floor all the time, and I wanted to do something a little more personal for each of them that also wouldn't wipe out my bank account.  They were all so very appreciative and truly seemed to be excited to use them!  My final chemo was the same as every other time; but this time, there was an air of excitement in the air.  We all laughed and talked through the treatment, and it went by quickly.  Yes, I still felt tired as the drugs were being pumped into my body, and I still felt a little sick to my stomach, but I was able to overlook it and keep talking to my family.  It felt good to laugh and smile.  I have not did much of that lately.  I have had more sad days filled with tears than I've had with smiles and laughter.  I truly have had many dark days lately.  Yesterday felt like I was breaking that cycle. 

My husband had to leave before my infusion was complete to head back to work; but just before my treatment ended, all the nurses came in the room with a "Warrior Award" for completing chemo.  They each had pink pom poms and were doing cheers and cheering for me.  It was a sweet gesture and a perfect ending to a perfect day.  I was brought to tears, which I held back, several times as I looked around the room at the support all around me and the efforts they had made to make this particular day a day of celebration that I wanted it to be.  They each worked hard to give me what I wanted--a day of celebrating a huge milestone.  As we left the infusion center, we walked out to Destiny's Child's "Survivor", and it was fitting.  

As we drove the 2 hour drive home, people were honking and giving us a thumbs up and waving.  A random stranger took a picture of the back of our car and posted it on Instagram stating how great it was to "see people beating this dreadful disease".  A girl my daughter knew who happened to be friends with this girl tagged my daughter in the photo because my daughter had posted a photo of the car earlier in the dar.  Overall, it was truly a day of celebration, and I feel so very blessed to have people who love me and made this happen for me.  God reminded me yesterday that I have much to be thankful for.  I have more reasons to smile than I do to cry; and most importantly, God has not forgotten or abandoned me.  He simply has his own plan for me, and I need to trust in his plan even though I may not understand it at the time.  

I'm sure I will have my share of sad days ahead of me; and I temporarily will forget the amazing day I was blessed with.  But I have no doubt the love of my family and the love of my God will pull me through and remind me of all the amazing reasons I have to be happy in my life.

Genetic Testing Results

Since my diagnosis, there has been much talk about genetic testing and the relevance it has to breast cancer.  Many of you may remember several months ago when Angelina Jolie chose to have a bilateral mastectomy simply because she tested positive for the BRACA gene that is linked to breast cancer.  Her mother previously passed away from breast cancer, and she made the choice to have her breast tissue removed before a tumor could appear.  Yes, this is a radical decision, but one I fully understand.

I have a strong family history of cancer in my family.  Not just breast cancer, but cancer in general.  It ranges from Thyroid cancer, ovarian cancer, uterine cancer, lung cancer, breast cancer. lymphoma, and throat cancer.  And all this cancer is on my Mom's side of the family--the side I resemble.  My mom's sister, Florence, passed away in September just as I was diagnosed with breast cancer from a recurrence of breast cancer that had metastasized to her bones and through her body.  She had the exact same type of breast cancer as me.

Knowing all of this, genetic testing was an obvious choice for me.  I wanted to know if I carried the genetic mutation that increases your risks for breast cancer so my children could be more aware to ensure they received regular screenings and were more proactive than I have been.  Genetic testing searches for a genetic mutation within the body.  This genetic mutation allows damaged cells within the body to go "unnoticed" and your body does not repair them.  Everyone has damaged cells within their body.  The damaged cell either dies off or the body repairs it.  If an individual has a genetic mutation, they body "ignores" this damaged cell.  Rather than die off, it divides, then divides again, etc.  A cancerous tumor cell is simply a damaged cell that has divided out of control.

I had my genetic testing on February 2, 2014.  Since that time, I have been waiting to hear back from them on the results.  I received that phone call yesterday.  Unfortunately, the news was not good.  I do carry the BRACA1 gene.  While this explains why I got breast cancer in the first place, it was still absolutely devastated.  While I suspected I carried the gene, there was a part of me that hoped my results would be negative--for the sake of my children.  Because I carry the gene, my children are now at risk for carrying the same gene inherited from me.  Therefore, each of my children have to be tested as well.  I pray to God this gene was not passed to any of my children as if they are negative, they then cannot be concerned about passing it to their children, and so forth.

Upon receiving the news, I cried for several hours.  I had prayed many nights my children would be spared this fate; and finding out I carry the gene increases their risk of also someday dealing with this.  It breaks my heart to think of my children having to face this.  I've often prayed that God would let it end with me.  What this means for me is keeping my right breast is no longer even an option.  Carrying the BRACA1 gene puts me at high risk for a recurrence, and keeping my other breast would only increase that chance.   Ironically, my Surgical Oncologist and Reconstructive Physician just confirmed a plan only a week ago, so I imagine this will again change everything.

I feel like I keep receiving one bit of bad news after another lately.  I could really use some good news and a sound plan that doesn't keep changing.  At any rate, I'm trying very hard to have faith in God and believe that he will see me through as well as protect my children.