Crossroads

I first want to say that I have been in a very tough place emotionally these past few weeks, and I apologize for being MIA lately to all of you that have been calling and emailing.  I truly appreciate all of you for checking in, but it's been very difficult for me to talk about everything that's been going on lately, not to mention the constant running around to appointment after appointment, which has been exacerbating my fatigue.  I guess the best place for me to start is to pick up where I left off last...

I began my radiation treatment just after Labor Day weekend.  It was decided that I will receive 6 weeks of treatment - 30 days total.  As of now, I am nearing the end of my treatment, as tomorrow will be my 24th day.  I was eligible for the clinical trial using the PARP inhibitor, so I'm also taking those meds twice a day while receiving radiation concurrently.  The way that the PARP inhibitor works is that it prevents the DNA of the cell from repairing itself after it is destroyed from the radiation. Both of these tools work together to help keep the cancer cells from growing.  The PARP clinical trial required three punch biopsies of the chest wall over three consecutive days at the start of my radiation treatment.  Two of the three were perfect, while one of them became really aggravated and infected, and it still has not healed completely.  Just one more bonus in this ridiculously long roller coaster of an experience.  So far, the side effects from the drugs have been very minimal, but I am now experiencing more of the effects from the radiation itself: the exhaustion from traveling down to multiple appointments everyday, as well as the cumulative effects from radiation, which has left my skin very red, itchy and burning.  My body is working overtime to repair the damage done to all the healthy cells, which is also contributing to my fatigue.  I was under the impression that I would be back to my self energy-wise a couple of weeks after radiation is over, but I was told to expect that it will take about 2-3 months.  My oncologist explained that the effects of radiation that I receive today won't be felt for another two weeks, which is why this has such a cumulative effect.  So at least the expectations have now been realistically set.  Expect the worst, and if it's not so bad, we're pleasantly surprised, right??

Now onto what's to come next.  I met with my oncologist last week for the first time since mid-July, just before surgery.  Based on what I was told in the days leading up to my surgery (that radiation would be the next step, followed by more chemotherapy), I went into the meeting ready to hear the next part of our plan for attacking this piece of sh*t disease.  So when I asked my oncologist what her plan was regarding the chemotherapy to come, she said, "At this time, you don't qualify for any other clinical trials...  I'm leaning toward not giving you more chemo since the tumors didn't really respond the first time, and I don't want to risk the toxicity to your body..."  I then told her how I actually would like to do more chemo since I feel that we have very little to throw at this.  She said that she could be on board with this, and told me about the two chemo agents that she would lean toward using.  She also told us that we need to put some serious thought into it because, if we're in a situation where I truly need it down the road because of a recurrence, and a clinical trial would be my best option, then I would be excluded from many of those trials because I had already had these chemo agents in my system.  So we're at a crossroads as to where to go next, and we are in need of some major medical advice from the best of the best.  I feel scared that my doctor just doesn't know what to do with me.

So this meeting led me to do a little reading into the specifics of the cancer we're fighting, which led me into another downward spiral.  After my diagnosis six months ago, I promised myself that I would stay away from the internet when it came to looking at the specifics of my case.  I knew that we had a tough fight ahead, and reading some things online would not help my positive outlook that I so desperately needed to hang onto.  I remember when I first saw that I was staged at IIIC, I focused on that for a while, before I pulled myself together and was ready to move forward emotionally.  The day after meeting with my oncologist last, I pulled out my Mayo Clinic Breast Cancer book and began reading some information about Triple Negative breast cancer.  It basically said that the good news for being TN is that there is a higher chance of the cancer to respond to the chemo (that did not ultimately happen in my case - strike 1).  I then went on to read about metaplastic cancer, and read that there is a lower chance of this type of cancer to have lymph node invasion (again, not in my case - strike 2), and that there is a higher chance of recurrence within the first five years, but that if it did not happen, then the good news is that there is a lower chance of recurrence after that.  I had to stop there, because after reading those points, I was bawling and wanted to rip up the book and break everything in sight.

So those are some of the reasons why I have had such a heavy heart lately.  I can't live like this for the next five years, so I know that ultimately, I need to make a choice and choose to live each day, not in fear of the what-ifs, but with thanksgiving in my heart for everything that I am blessed with.  I know that it will come, but I am just not there yet.   Right now, I am super paranoid about every single little ache and pain that I feel...  my shoulder, my chest, my lower back hurts - Why? What is that?  Is that cancer?!  This is no way to live!  Last Tuesday, I had to get an ultrasound on my left neck lymph node, as it had been swollen for a couple of weeks.  It was mental torture.  It was a complete flashback to the day that I had my mammogram last March, which led to the discovery of the tumors.  The technician did her thing, and then told me to wait on the bed while she showed the films to the doctor.  She could tell me nothing.  I was trying to read her face - nothing.  The technician then came back to do more imaging.  Same as my mammogram...  "Mrs. Horn, we need you to come back for more pictures..."  After the technician left again and I continued to wait, the panic crept in, tears began to fall, and the constant praying ensued.  The radiologist then came in to do more imaging herself, and she asked me if I had a recent cold (no, not really).  After what seemed like FOREVER, she then said that at this time she thinks it's reactive (to my body fighting off germs, colds, viruses, maybe even the infected punch biopsy site, etc...), and that if it does not go down in the next month or so, then my doctor may want to order a biopsy of it.  So all in all, it was good news, but an excruciating experience, nonetheless.  

What's next?  We are first asking my oncologist to present my case at a meeting with her boss in attendance, as well as several other oncologists, where they will discuss the case, and hopefully come to a consensus as to how to proceed.  We are also going outside of Memorial Sloan-Kettering to seek a second opinion.  We are looking to contact some doctors at MD Anderson in Texas, Dana Farber up in Boston, and Stanford as well.  This is MY LIFE on the line here, and no doctor is going to care about it as much as Jason and I do, so we are doing everything that we possibly can to find the doctor that has the experience that we so desperately need with triple negative metaplastic breast cancer so that I can stay here with my husband, and be able to watch my daughter grow into the woman that she is destined to become.