Monday, March 24, 2014

Update and Prayer Request

Well I have been putting off my blog for a couple of reasons.  One, I'm exhausted and two, I really don't know how to put into words how I am feeling. My PET scan was Tuesday and while I was not overly confident, I was not letting it bother me.  It could have been because I was still feeling a bit exhausted from my previous chemo round and that my parents were here and we were busy researching some fun things that did not involve cancer.  It is still a family secret I believe so I can not disclose our research at this time:)  If you know already, consider yourself special!!

Thursday we unfortunately did  not receive the news we were hoping for.  After only 3 cycles of on this trial, we learned that this stupid cancer decided to set up shop in a new lymph node in my lung / chest wall.  I had wondered if there was something going on as I was having some pain in this area, but from the previous scan knowing there was already a node close to there, it made sense to believe it was the chemo knocking out that cancerous node.  Nope, that wasn't what it was.  It was very emotional for Don and I to find this out.  Dr. Phillips gave us the news and informed me I was no longer eligible for the trial since I had progression in a new spot. At first I stared at her and waited for her to say something positive, when that didn't happen, I broke down.  Dr. Phillips is so sweet and as I mentioned before, I believe we are about the same age, so I know this is not easy for her to give this news to us.  After she rubbed my back for awhile, she decided to give Don and I some time alone.  After what seemed like forever of me crying, she returned and we went over the next options.  She had already consulted with a few other doctors including Northwestern and they all felt the next drug of choice was Eribulin.  It is given for 2 weeks on and 1 week off - same as what the trial was.  We will do 3 rounds (9 weeks) and then repeat a scan to ensure we are on the right path.  I was anxious to start and Dr. Phillips was able to get our insurance on the phone and approved and we went off to the infusion lab for my first treatment.

My parents were anxiously waiting in the waiting room.  I think they too were hoping for some reassuring news that the current drug was working.  I was able to text a few words to my mom to prepare them since my eyes were about welted shut from crying.  On the way to the infusion lab a few nurses stopped to hug me.  It makes me feel good that the entire team at the University of Chicago is rooting for me and when I get good news, they are happy and when I don't, they are there for me to give me a nice hug. I think it was also nice for my parents to see what good hands I am in.   I hope soon we can all high five, fist bump, hug, and cry tears of happiness.  I am due I believe.  This new infusion is very fast.  It takes longer to get my blood levels than the treatment.  The treatment takes 10 minutes.  I was a little let down with this - I do enjoy my Benadryl induced coma.  Oh well, after treatment I was able to crawl into bed and sleep the afternoon away while mom and dad tended to the kids.

Don and I have decided at this point, we need more confidence that we are on the right path.  As I told Dr. Phillips, I feel like we are picking these drugs off way too fast and every time I get a scan I learn how much closer I am to death rather than how much closer we are to recovery.  She has reassured me that we have more to go, but we have decided that it is time for a 2nd opinion.  Back in January when I started the trial, I had reached out to Dr. Lisa Carey through Chapel Hill, NC.  She is listed on-line as a triple negative guru.  At that time, we e-mailed back and forth and she agreed with the trial and knew Dr. Nanda (Dr. Phillip's boss)  At that point we were comfortable, but now that we are on to the next drug, I think it is good to get in front of her and have her look at me and review all of my scans and prior treatments.  I was able to get in with her on April 2nd.  I will fly out on my birthday (April 1st) and my parents will meet me there to take me to a nice dinner.  We will stay at a hotel and then go to my appointment the next day and then I will fly home.  It will be a quick trip, but I'm really looking for more reassurance or another option for treatment.  The hope is they all agree, but if not, she can hopefully concoct a plan and have Dr. Phillips treat me here for it.

Since a lot have asked (I'm grateful for your questions because it shows how much you are truly invested in my recovery and well being)  Why don't they know what to give me.  It is not easy to explain, but here I will try.  Triple negative means the cancer is not hormonal.  Because it is not hormone related, there is not a set treatment.  Triple Negative patients are grouped under one huge umbrella of "We don't know yet what to do with you so sit tight".  Not funny, it is true.  There are probably several different forms of triple negative, but science has not yet been able to detect each one so that is why we are just throwing things at this cancer and hoping me get a bulls eye.  It is super aggravating as a patient and I know it is for you too.  Next time you think of donating to something, remember breast cancer or more particularly a triple negative foundation.  More research is necessary to detect what we need in order to survive.  I have met several triple negative patients.  Some are in remission and some like me are fighting for our lives. I am not down playing hormonal breast cancers because like triple negative, some women have recurrence or do not respond to treatment.  It just goes to show how much more work is needed to cure this stupid disease.  So hopefully this helps.

Don and I are doing okay.  We are down, but trying to stay hopeful that the third time is a charm.  We are exhausted physically and emotionally.  I can speak for myself here and not him when I say that I am   having a hard time getting through the day with out tears.  I feel like I was overly confident with the trial since I had done carbo before and responded to it.  I feel like my body is failing me and it is easy to blame myself.  I know I am doing everything I can.  I may not do yoga daily anymore or juice regular like I should be, but I am doing what I can physically do daily and that has to be enough.  So see, I know this, it is just hard to remind myself of this all the time.  I also know that I set the mood these days at home which is extremely difficult.  Everyone- parents, friends, Don and the kids follow my emotions.  So that is difficult because I'm human-I break down, but when I break, so does everyone else.  And when everyone else breaks down, it makes it all real and scares me because it shows me that they are scared too.  I'm not saying don't cry in front of me, but this hell has got to end.  My faith in God has grown stronger and I have not lost hope, but this is beating me down.  I need your prayers now more than ever.

Some has asked about my hair, my hair is getting weaker by the moment and will probably be gone by weeks end.  I'm actually okay with that.  I will miss it, but I left it short for this reason - I did not want to become attached to it.  My fear is Ryan.  He was too little to remember me without hair last time, so I do get concerned on what he will think.  But I'm ready and my hair dresser is as well.  Justin reminded me it is just hair.  Sweetest boy around if you didn't already know that.  He also has reminded me not to get upset because it might make my cancer cells grow.  See, cancer is on all of our minds, it is a word used several times during the day here.  I wish it was a swear word that I could tell him you can't say, but we have to teach him about this unfortunately and we have to educate him since he is forced to go through it with us.  Someday this will all make sense….Until then, keep praying.

Treatment #2 on Thursday and then a week off.



1 comment:

  1. Keeping you lifted in prayer I have had many family members who have had cancer some have lost the battle and others who have over came you hear so much and have so much advice I wish I had known sooner for my mom to not eat sugar for it feeds cancer and wish I knew to put her on coral calcium , by bob barefoot and it's graviola, IP6, colostrum, PauD'Arco, acidopholous, and anything else that builds the immune system it has helped lots of folks I know not that it does everyone I pray you and your family find and end to cancer and your life is fruitful God Bless