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.



Thursday, March 13, 2014

Super Powers

"You never know how strong you are until being strong is the only choice you have"

I am slowly but surely making my way back from being "under the weather"....Wow, last weeks chemo really kicked me while I was down.  Sister Jess came in last Wednesday night just in time to join me for chemo Thursday.  It was also a special day because Ryan turned the big "2"!  Back up some, I had went Monday through Wednesday last week for a shot in order to get my cells to produce more quickly so my counts would not be too low for the 2nd round of treatment.  Lucky for me, the shots worked from just Monday and Tuesday and Wednesday they just did the blood draw and confirmed chemo was a go!  So Jess and I packed up for chemo Thursday.  I was not the best host as the Benadryl knocks me out.  I did confirm with the nurse that the dose on benadryl is like 4 times higher the dose someone would take on a given night.  Why it is so high, we are not sure....Not even the nurses, they are just following every rule that goes along with this clinical trial.  So off to la la land I went and Jess just read on her Kindle and made friends with the nurses.

Thursday evening we celebrated little Ry Guy's birthday.  With Jess here, she summoned me to the bedroom all day Friday to rest since we were having a small get together on Saturday to celebrate Ryan's birthday with family and friends.  Saturday has been my rough day and this past Saturday was no different.  I was sleepy!  My tiredness did not go away as the weekend progressed.  Jess left and Whitney came in and still no energy.  In fact I was so tired and weak that I was very depressed and spent a lot of time crying.  I hate to put my sadness in my blog because I worry that others will worry about me, but I was really down!  I wanted to spend my time with my sisters here having fun, not putting the entire burden of the children, dinner, dog etc on them.  I tried acupuncture and that didn't really boost me at all either.  In fact, from the teeny tiny needles, I bruised on my hand!  So Wednesday I went for blood work and confirmed my red blood cells were low and I needed a transfusion!

Those local know we were lucky to receive more snow on Tuesday night so when I arrived at the cancer center on Wednesday for a blood draw, the parking lot was not plowed and just walking from my car up to the building (jumping a few snow drifts) I was exhausted!  My heart was beating in my head type of exhausted.  So at first when Dr. Phillips explained the cancer center doesn't do the transfusions and you have to go to the hospital for them so the time and date for the transfusion was out of her hands, she quickly got on the phone and called when I told her how weak I was.  Thank goodness!  She probably doesn't hear me complain enough so when I did, she probably was about to call a code red on me!  The transfusion was painless - not short, but painless!  A transfusion takes around 4-5 hours.  Thank goodness I was so tired, because guess what I did?  You got it - SLEPT!  Slept as I received super powers or as some call it "tiger blood".

Today I woke up feeling refreshed so Whitney, Ryan and I attempted to hit the mall and run some errands.  We were able to do about 1/2 on our list of errands before nap time was calling both Ryan and I.  I napped this afternoon and now I feel good.  I just hope with this boost, my levels will rise enough for chemo to start back up next week.

Tuesday is a dreaded PET scan with results on Thursday before treatment.  In order to stay in the trial, the PET must show that the cancer has not progressed more than 20% and it must show some improvement.  So I am scared of course.  I feel like this chemo is working some, but my skin is still red and I still am medicating every 4 hours.  So I do feel like we need some more time, so I guess my hope is that with this next PET scan, there is some positive results from the chemo and that the cancer has not moved elsewhere.  This part will never get easy for me.  I thought after my last one and getting not so great news was going to be the last time I worried about scans, but that is not the case.  I am scared and know that while we still have other options, we will be picking another one off and that my friends is scary!  So I am trying to concentrate just on today and today, I feel better than I did yesterday so that is a plus, right?

Whitney is here until Saturday and then my parents will tap in as she taps out!  They will be here for a week and will help get me through the dreaded wait of the PET scan and join me for chemo on Thursday.  For anyone that donated to the travel fund or have sent money to my family, we are forever grateful.  It means so much to us to have my sisters and parents here with us through this.  Not only does it give Don and I a break, it gives them the peace of mind they need to see me in person to see the "real Amber".  Over the phone or FaceTime does not do us justice.  I need them and they need me.  So thank you!  To my local family and friends, you are not forgotten!  We have received an outpouring of support around here.  Helping with the kids, food, snacks, etc.  You guys help to make our day to day continue like nothing is wrong, so thank you!

Prayers for this next week for my PET Scan results to be positive, my energy to continue to replenish and for my family as they travel in and out.

Love to all,


Saturday, March 1, 2014

Chemo Round 2 cycle 1

Hello!  We are hanging in there!  I slept through treatment again on Thursday.  I must be the easiest patient there is.  Give me my Benadryl and I'm out like a light.  Wendy had Ryan during chemo on Thursday and when he woke up from a nap, he was running a fever.  Being extra careful, we decided it was best if he went to spend the night with nana Naughton until we could get him into the doctor on Friday.  Friday I woke up feeling good (I usually do the day after treatment) So I ran some errands.  Ryan's appointment didn't go like I wanted.  I wanted to hear he had an ear infection and was not contagious, but we were told he had a virus and both his doctor and my doctor both felt it was better if he was not around me until he was fever free for 48 hours.  This of course made me sad and think again how much my life stinks at times! Don went to his parents and stayed with Ryan last night while Justin and I held the fort down here with Kaner!  I felt great until about 9 this morning and then the fatigue hit.  So I slept from about 9:30 until 2.  Waking up, I was in pain due to not taking my pain medicine so I took that and then had to lay down some more.  Now I feel just okay.  Hoping tomorrow is better!

Ryan has been fever free since last night so hopefully we can bring him home tomorrow.  I am so appreciative for Don and Wendy to take him without really any notice.  I also love that he doesn't care that he is away from us and is having fun and is in great hands.  Thank you nana and papa Naughton! His birthday is Thursday so he needs to be well for that.  Not much more to update here.  Just good thoughts and prayers to re-gain energy and for my levels to stay up.  Oh, I guess one more thing.  So this cycle I did have another high dose of carbo and the plan is for me to go in Monday - Wednesday this week for a shot that will hopefully keep my levels up.  We shall see!  So positive thoughts and prayers for that!

Off to relax and hopefully going to bed soon!  I feel like such an old lady!


P.S. Triple Negative Breast Cancer Day is Monday, March 3rd.  There is a good site on Facebook for this and it talks about how every 30 minutes someone new is diagnosed with Triple Negative.  I wish they would find the right medicine for this!  Go to Facebook under Triple Negative Breast Cancer Foundation for more information!  Stop and think about us though on Monday.  It is really scary and sad to think about this!