Thursday July 31, 2014

I am doing a blog update because I am sure some of you are like , “what the heck?” I haven’t replied to any ones kind messages and wonderful sentiments. I got such wonderful news on Monday, the treatment is working as it should and decreasing the number of cancer cells that have metastasized in my body. Wonderful news, considering how advanced my cancer is. It was an emotional day for me. I was excited to come home from treatment on Monday and see my kids. We got home and I squeezed them so tight and we hung out and then we got ready for swim class. I took them by myself because I was feeling okay, maybe my adrenaline was pushing me through it a bit. We had a normal evening at home and everyone went to bed with smiles for the next day.
Then……..I suddenly wake up at 3:30 am with the chills so bad I couldn’t take it. Scott wrapped me up like a burrito in 4 heavy blankets with a heating pad underneath me and put a winter hat on me. I still couldn’t warm up. I was frozen to my bones, I actually felt like my bones were frozen. My entire body just hurt so much. Suddenly, I spike a fever of 102.5 which is not good. I have a compromised immune system so anything over 100.5 I am supposed to call my oncologist and go straight to the emergency room. Normally I would’ve done that but I just received a new drug infusion with my chemo called Zometa. It’s works with my other drugs to help strengthen my bones from the tumors that took over and destroyed my spine. I was told that some of the potential side effects are “flu-like” symptoms. I’ve never had the flu but I know it’s fever, chills, body aches and I’ve heard of some people staying in bed for 2 weeks with the flu so I thought this was to be expected. Scott gave me one extra strength Tylenol to help with the pain and try to break my fever and got me some ice cold water and then I was so worn out from my chemo that day, I just passed out. I woke up feeling even worse physically but at least the chills were gone. I still had a fever so I took some more Tylenol. I couldn’t even move so it got to the point where I decided to send an email to my oncologist and just give her a heads up as to how I felt. I didn’t expect a phone call back right away telling me to get to the hospital ASAP. So, that’s what I did and now it’s Thursday evening I am still freaking here with no end in sight!

The good thing about having cancer when you walk into the emergency room, you don’t have to sit with the general public hacking, coughing and puking everywhere. They immediately throw a mask on you and put you in a sealed private room in the back with its own ventilation system. When a cancer patient has a fever, something is very wrong and could be potentially life threatening so there is no waiting line. They immediately told me I was being admitted to the hem/onc floor. My blood pressure was very low at 70/40 with no explanation. I was not dehydrated, I wasn’t dizzy, I didn’t have a headache. As of right now my pressure has remained stable at 95/52 THANK GOD, because they were 2 seconds from putting me in ICU. My X-rays were normal and my preliminary labs were great not showing any signs bacterial infection in my blood or in my port lines. Even my blood counts were good. I was started on IV antibiotics as a precaution in case something was brewing. I got cefepime and vancomycin. They transported me by ambulance to the cancer floor and by the time I got there I was having an allergic reaction to the vancomycin. My hands were swelling and getting so itchy that I wanted them cut off. They stopped the IV and gave me Benadryl and it settled down. They found a cousin antibiotic that I could have and I’ve been on the two non stop as of now. I have been checked and rechecked every hour on the hour with vitals and blood work and every time they checked, something was wrong. Every single time. The red numbers were popping up everywhere, out of the blue. I do have to say that I am so thankful for my port, all my blood and meds go right through there and it is painless, they even draw my blood in my sleep. I do have to get heparin shots in my belly three times a day so I don’t get a blood clot.

I’m not going to go through all the craziness of this hospital visit but fast forward to right now, my white blood cell count has severely dropped to 500 where I am truly neutropenic and septic. There is no confirmed source of infection yet. They are suspicious of my port line being infected because it was accessed right before I got sick but there is still no confirmation.

I don’t really have any answers yet but all of the comments that I received on my last blog and update on my health was amazing and made me feel so good! Thank you so much for all the continued love and support as well as all the continued prayers and good thoughts. They work for sure and make a world of difference to me when I need them. And a huge thank you to my friends and wonderful family for being there for my children and making sure their world isn’t turned upside too much as I get back on my feet. I miss them so much and they think I am in the hospital getting some extra chemo. I can’t thank my husband enough, he has only left my side to take care of some things for the kids and has made sure that he is on top of everything when I have been out of it. I’m not in the best of situations right now but I am very blessed and surrounded by nothing but love and as much as it seems like this is the worst thing ever, I am where I should be and I will get better. I need to get better so I can get home to my kids and get back to life.

Dealing with a cancer diagnosis is not as simple as winning and losing. It’s about the choices you make along the way and how you choose to live with your disease and make the most out of the beautiful gifts you have been given. I don’t have to remind myself everyday of how blessed I am to have the family, friends, love and support, because I already know.

p.s. as soon as I know more, I (or Scott) will update!

update

So, we met with the doctors today to review my recent scans. The last tumors that remained in my liver are no longer visible on scans. This is very exciting news as the liver was the primary target for my recent treatments. My liver is now sterile of tumors. My bones show treated tumors with no active disease. I am not cancer free but I am stable and there are no signs of new disease. For me and my type of cancer, this is huge news. I’ve seen people throw around the term “NED” which means “no evidence of disease”. My doctors don’t use this term because with metastatic breast cancer there is always cancer floating around in my body. The cancer is systemic and in my blood. They like to say that there is no progression of disease.  It is very exciting for us when the liver and bone cancer is not being seen on scans because it means that it is responding well to the treatment!  I still have the tumor in my right breast although it is much smaller and there are still lingering lymph nodes under both arm pits.  We did talk about the mastectomy today and I still need to wait before they will consider surgery. The main concern is the healing part. The condition my body and my immune system is at right now is not conducive to major surgery. If I continue this route, then I can have the breast surgery next year. She did talk to me about having my ovaries removed in a few months. I am on a drug right now that is shutting them off, so I can have the surgery in a few months, it would just be laproscopic and not too much for my body to handle and I could get off that drug. She did add a new infusion today called Zometa, this is for patients with bone metastases to help strengthen the bones because mine are quite weak right now with the treated tumors and also the chemo makes my bones weak. My liver functions have come back down although my bilirubin is still up. Still waiting to see where my tumor markers are at, but I will know those numbers tomorrow. All in all, we received wonderful news at this one year mark considering a year ago I did not have a very good prognosis. Thank you for all the love and support. The healing prayers are working! I will be back at it in 3 weeks and will continue to fight as hard as I have been to get to this point.
Lots of love!!!

Scott’s Entry – July 28th, 2014

So it’s my turn to blog. It’s Monday around 11am and it’s a chemo day. Jess is resting and getting her treatments while I punch away at work and handle our world. The sun is out, the world is awesome!!

Now before I run down Brookline Ave hugging and kissing everyone, which is certainly something I’m capable of, our journey will never end. She still has terminal breast cancer and will NEVER be done with treatment. She stops treatment and it will come back. It will be inside her every day, and anything could change with this, but for now, the treatment is working and keeping the cancer at bay. Just amazing.

I am so happy for Jess, for her kids, for our family. What really got me early on was how short of a life we MIGHT have together. It’s been one year since I got the “call” and our lives changed forever. Some of this wasn’t good, other parts, for me, anyways have been incredible. To recognize what you want and who you want to be with is such a rare gift. I’m so blessed to have found such an amazing woman. All I’ve ever wanted from my life is to be happy and with someone who wants to battle this “life” with me. Jess and I are a true “team” in every sense of the word!!

I was actually out last night, at a work dinner and got a chance to walk the streets of the North End for a bit. Got a change to thank God for how he has blessed me. With a crazy roller coaster ride these last few years, I was convinced God was playing a big joke on me.

But the truth is to test me, and to bless me all in the same story, I’m beyond thankful. To have met the woman of my dreams (except when she is yelling at me), and to find a way to spend the next 40-50 years together is all we want. We will have that dream. I’m convinced of it. Most likely not good for Jess, but she will have the make the best of it. Ha!

There are some things about my life I won’t ever be able to explain. Some are deep and personal and I won’t even put them on here. I will, however, be able to explain how I knew Jess would be ok. I knew. From how she is a fighter, to how smart she is, to how much she takes care of herself during all of this. I just knew. She is a miracle. She is my gift and my miracle. I just knew she would be ok.

We have learned to accept the good with the bad. We accept what we can’t change and have learned to live with it. We also know a positive attitude and true love can help with anything, so this is just the next step in our journey.

On the kid front, all is well. It’s been a crazy summer. Camps, running ragged, my work travel. Never stops and we love it. We have a week in Maine from the 9th to the 16th. Trying to get some family time before school starts. Should be fun!!!

Just a great day!!

Loves to everyone!!!

Tuesday July 22, 2014

I’m sitting in the hospital right now in between scans. I should be resting as I sit here by myself but that is not the case. I did not sleep well last night. I have been here all day, getting poked and scanned, I’ve got about 3 hours left and then I can go home. I am quite anxious about these particular tests today, even though they are the same ones I get every 12 weeks. It has been one year this week since my diagnosis of breast cancer. One year. Hard for me to use the word anniversary. As I sit here and reflect on the last 12 months….holy shit. I remember coming home the day I found out like it was yesterday. I remember the clothes I was wearing, I remember seeing my kids for the first time after learning I had cancer. As I sit here today, I remember the first time I stepped into this hospital and meeting my team and learning what was in store for me and my future. When you hear the words “you have breast cancer”, you never forget the tone it was said to you. You never forget the initial statistics that are laid in front of you…15% chance to live 5 years. 2 years to live with my advanced and aggressive form of hormone positive cancer. I remember walking out and just saying to myself “I can’t wait to start treatment!” “Let’s get this fucking cancer out of my body so I can get back to my life and my kids and my family.”

“I don’t have time for cancer.”

I wish you could be in my head as I think back to all the amazing and wonderful people (some of whom had no idea who I was) that reached out to me and my family. The gifts that were brought over for us, the food that was made for us. It just seems surreal. I look back at pictures and I was sooo sickly looking and pale and bald and yuck. I took the bull by the horns and have been fighting this thing with all that I have. I have not given in to any part of this and believe me there have been times where I have wanted to. There have been nights where I have cried to my husband and told him that I didn’t want to be sick anymore and I didn’t know if I could do this anymore. He never accepted that and never let me get down. He got right in my face and told me what I had to do and that he would be right beside me every step of the way. And he has done just that. I have been so blessed these past 12 months with love and support from family, friends and complete strangers that there is no way I could ever give up. I will never be able to thank everyone enough for all that has been done for my family and I. Scott and the kids have been through so much and seen so much in the past 12 months that they simply amaze me. They deserve the superman capes for getting through this past year.

As of right now I have been pretty stable. Physically and emotionally! I go for my infusions every 3 weeks and I continue to live my life as normal as I can. My kids use the word “chemo” in their daily vocab. I’ve got this crazy hair on my head that actually needs to be tamed. I’m being medically pushed through menopause right now and I have ridiculous hot flashes. I’ve got the usual aches and pains from the cancer itself and also from the side effects of some of my meds, but LIFE IS GOOD. I love my life. I hate cancer but I love my life and I am a happy girl.

I’m about to step into my last machine for the day, so, fingers crossed!

I will have some more updates soon, as I get all my test results back and I meet with the doctors to discuss treatment plans. This is the “scanxiety” part.