Not what I hoped for...hospice.

The negative shift in my health has come so fast that I just can't even believe it. Currently I am sleeping all day except for appointments I have. I have a completely distended stomach and the liver is very swollen. It makes it very difficult to eat because of the nausea and the pressure in my abdomen and lack of appetite. I can barely walk up and down stairs without becoming incredibly winded. In fact I prefer to lay in bed than walk anywhere at all. I have zero energy and feel very weak. 

This started about a week ago. It turns out that the rash was not a rash at all but billirubin being released into my skin. Liver functions are significantly compromised. I am in a lot of pain and very uncomfortable. Like I said I can barely walk around. Worst of all, having zero energy also impacts whether or not I can spend time with the kids. Last week Abby was very reactive with me. She doesn't like to see me sick and laying in bed all the time. I don't think I've ever done that the whole time I've been fighting this disease. But I also don't know what to tell her because I keep holding on to hope that there is time left for me. One more thing to do, one more trial to try, one more surgery to fix this. But that is like looking for the holy Grail.

I was able to complete all of the testing for the trial last week and everything seemed fine. They called me on Friday to say that I need to go in on Monday to repeat my blood work because my platelets were too low. They also wanted to repeat my liver function tests. All the results from those tests were very discouraging. I will no longer able to participate in the trial. The liver is too compromised and is in the beginnings of failure.

I saw Dr. McAndrew yesterday on Monday for blood work, hydration, and ended up needing a unit of blood too. After looking at all the blood work and the swelling in my abdomen, she is suggesting hospice. She estimated about three weeks. She also suggested that since my kidneys and heart were so strong that it could be delayed. But I wouldn't really be functional at that point. I asked Mary Lou to tell me what really happens to patients in my condition. She told me that I won't really know what is happening. She said as the billirubin starts building up in my system that it will start to make me confused and disoriented.

I know I have said many times before that you can't make decisions when you're in pain. I am really feeling the effects of that. I just want to be at peace and out of pain. I want to get the hospice in here as soon as possible so they could monitor pain medication and really help me get comfortable. 

The other last hope though very small would be from the ultrasound of the abdomen I had today. If for some reason there is a blockage in the bile duct, then they can put in a stent and then be able to continue some type of treatment. Philomena said, however, that the chance of that was very small, given results of the blood work. At that point I would be able to continue some type of chemotherapy or potentially get back onto a trial once the blood recovered. Once again the problem becomes a) risks and recovery from surgery and b) if the liver is already compromised what type of chemo can you do that isn't metabolized in the liver?

There are so many moving pieces right now like trying to find hospice and trying to find a good therapist/transitional list for the children, and also going for broke to see if there is anything else out there that can help me. Thankfully David is in charge of this for me. He's working hard reaching out to family, friends, doctors and institutions to make something happen. I am living on borrowed time.

I always thought when they said that you had a few weeks or a few months to live that you would take charge and go do things on your bucket list. But when you are in a bad state of health it is impossible to do anything other than sleep in your bed.

I have so many things I still want to do before I go. Bucket list doesn't seem possible. Mostly I just want to put together keepsake boxes with letters, videos and mementos for the kids so that they can remember me. 

Everybody says it sounds like I am giving up. However, at what point do you surrender? At what point do you face the reality that your time is coming to a close and start getting your affairs in order? 

I want to thank everyone for all of the texts, emails, phone calls, visits, gifts, deliveries and support that you have given me over the last few months. I have been hoping to get around to responses and thank you notes (like for my birthday) but there never seems to time.  Please know that I really appreciate your thoughtfulness, love and support. 

I had to write up a medical history synopsis for all the research we are doing. It was incredibly depressing. To see the last four years of my life summarized into three paragraphs of treatments, surgeries, and injections just made me sick to my stomach. When I was less knowledgeable about cancer it seemed like there were a lot of strides being made in cancer research. But many people die every day from this disease and I don't feel like we are any closer to a cure. People may say that cancer doesn't define you, but looking back since my initial diagnosis - I think, how could it not? It has been the biggest uninvited guest in my life for the past four years. Now it plans to rob me of raising my children and being a wife to my lovely husband David... I'm 38.

#fuckcancer

For so long I kept hoping to get better and get back to sense of normalcy. A place of peace. The mental, emotional, spiritual, and physical break that every warrior needs to recharge the battery for the next fight. I hope I can get through this. But my yellow colored wolf eyes are telling me something different...

Medical History:

Diagnosed in September 2010 while 5 months pregnant; no family history of breast cancer, BRCA1, BRCA2 and BART negative. Pathology was ER+ 75%, PR-,  Her2 negative (1+), Androgen Receptor positive 15% (3+). Immunostains showed that the neoplastic cells were positive for CK7, estrogen receptor, and GCDFP-15 (rare cells); they were negative for CK20, TTF-1, HepPar, chromogranin, and CDX-2. Repeated pathology after recurrence -  immunostains performed were reported to show ER positivity in 95% of tumor cells with a staining intensity of 2-3+, negative staining for PR, a Ki-67 labeling index of 21%, and low expression of p53. Immunostaining for HER-2/neu was equivocal (score 2+). HER-2/neu amplification by FISH was negative. 

Initial treatment plan was four cycles FEC-100 (cytoxan, epirubicin, fluoracil). Gave birth 12/2010, then four cycles Carboplatin and Paclitaxel, followed by left breast mastectomy and lymph node removal (15 of 19 positive) on 4/2011, immediate reconstruction with expander. Radiation for 7 weeks with Xeloda boost ending 7/2011. Tamoxifen, Lupron treatments after initial treatment. Metastatic breast cancer confirmed - liver and bones 9/2012. Sought advice from MD Anderson; repeated liver biopsy to get into possible trial; started Xeloda 11/2012. Switched to monthly lupron injections and added monthly Xgeva infusions. On 8/2013 switched to Afinitor/Aromasin combination (terrible reaction). On 1/2014 switched to Abraxane, dramatic improvement in bones - 4 cycles but continued rise in tumor markers;  after 2 month insurance fight and approval; attempted Y90- siripheres procedure - angio-mapping procedure revealed advanced liver disease and surgeon would not do procedure without tumor shrinkage. Switched to Carboplatin/Gemzar and attempted 4 cycles but low blood counts continually delayed infusions. Currently, waiting to start clinical trial for FGFR inhibitor JNJ-42756493, a pan-fibroblast growth factor receptor (FGFR) inhibitor.  Patient has FGFR3 genetic mutation.