This is the first time I have blogged from the hospital. I just got my port “accessed”. This means they stick a big needle into the reservoir of the port and leave a clamped tube hanging out of my chest. First they draw my blood from the port and send it to the lab and I just sit here and wait. I can’t start my chemotherapy until they know what my blood counts are. I was pretty good with what I put into my body this week, with juicing and what not so I’m hoping for some good results. Now that I have the chemo going through the port and straight to my heart, it hits me pretty hard. When I used to have it going in through my hand, it would travel through my veins and leak out and I didn’t have the violent nausea. Last week I was soooo sick from chemo that I actually had anxiety last night about how I was going to feel today post treatment. Ugh…violent nausea is the worst feeling. Thankfully, I have a supply of pills to help with the toxicity.
My labs are back and my WBC and RBC are low but not dangerously low so I can have treatment, the are always surprised at how high my hemoglobin and hematocrit are. They are in the normal range for a “normal” person. This is my diet and my juicing, I am definitely proud of how I stay on top of that because I know how important it is. My tumor markers are not worse either. My CEA (carcinoembryonic antigen) is 1.8. This measures the amount of protein in my blood, if you are a healthy adult, this is not present. If chemo is working , this number will go down. If it gets over 4.0, I’m in trouble. My ca27.29 is 19. This antigen is specific to measure if my cancer is spreading and how well my treatment is working. If it gets over 39, I’m in trouble. My liver functions are elevating which is technically not good because I have tumors in my liver but this is most likely related to the chemotherapy working (hopefully) and not cancer cells multiplying.
With all this being said, I have had over 20 rounds of chemotherapy with 6 different chemotherapy drugs. I have all the potential side effects listed, some worse than others. I am not going to list them all because they are gross, painful and not fun. I have some new swollen lymph nodes that have been discovered in the inguinal area bilaterally, more on the right side. My oncologist doesn’t know what these are yet but we will know more after March 4th. Big scan day… Brain, liver, lungs, pelvis and bones.
My hair is starting to grow back, strange colors and very soft, like a bunny rabbit. My fingernails are also starting to grow back attached. I just wish the feeling would come back in my fingers and hands. The neuropathy is the worst, not having the feeling and strength is quite disabling sometimes, I can’t even tie a shoe properly right now.
It’s funny how the 9th floor at Beth Israel knows Scott and I so well. It’s our second home. Lately, in and out of the hospital, people have stopped to approach me and tell me how good I look. Is this because I looked terrible in the recent past? Is this because I look good for someone who has Stage IV breast cancer? Why, all of a sudden, do I look so good? I can assure you, most days I look much better than I feel. I don’t want my kids to ever see me suffering or in pain. I haven’t shown them the port yet. They have been whacked with changes to their mother, they don’t need anymore right now. They are finally used to the new me and (dare I say it) have accepted it. I will never stop saying how proud I am of them and the brave little soldiers they are. They are the 2 most loving, sympathetic, empathetic, compassionate and caring little girls because of what has happened to me. They are always aware if someone is hurt and always want to help or find a way to make them feel better.
I am very blessed to have Scott by my side. Literally. He sits by my side and makes me smile and laugh while I am being poisoned. He is my rock and my heart and sometimes he makes me forget that I even have cancer.
I am also very humbled by the outpour of friends and family and friends of friends and complete strangers. I am so appreciative of all the love and support I couldn’t do this without it and I am very grateful.
I have to sign off for now, I am on my second bag of chemo and getting woozy.
Much love to all! Happy Monday! Xoxoxo
Well folks – sorry we haven’t updated in a while. Just been so busy and crazy, it’s just been really hard to post an entry.
Yes, it’s Monday and we are at BI for our usual treatment. Jess has her port in now, so they have to draw her blood and get that ready for her chemo which should start around 11am.
Things at home have been pretty good. Sad to say, but we get used to the roller coaster with Jess and how she is feeling, but she has had more good days than bad, which we are grateful for. I think what shocks me the most is she is probably in much more pain and discomfort than she ever let’s on. I had a kink in my neck last night and had to tell everyone. Just amazing how strong she is.
We didn’t have the kids much this weekend so we got to spend some great quality time together. It was so great to sit and chat and hang out without the tornado going on around us. She continues to amaze me at her outlook on life and how she never does anything for herself.
She did get to go to a “bag party” on Friday night. She was tired when she got home but I know she loved seeing her friends. Happy she was able to do that.
Some updates on the kids. Izzy and Hannah have been in school for a month now. They just love it. Both are so comfortable and excited to go each day. It’s amazing. Love seeing them happy and smiling a lot! My Courtney is doing great, doing so great with all A’s on her last report card. Justin is doing real well also, just amazes me how strong he is becoming on and off the court. Next 24 months will just be so nuts but I know I will be sad when he leaves for college. I may just go with him!!
School vacation was last week and I took the girls to Framingham and Plaster FunTime. Two and a half hours later, we had three masterpieces, no fights and one tired Scott. We then went to Olive Garden for lunch which is always comical with those three and then we finished at Dick’s where we got the girls all set for spring Tee Ball and Lacrosse. I was absolutely wiped out when we got home.
Justin has his two week break from Rivers in March and we will head to the Big East Tourney in NY for a few days. I have a lot of work there so it will be a combo trip where we watch some hoops and Justin will get to go on some appointments with me. I’m so excited to spend that time with him.
As for Jess, she has been busy keeping the house clean, taking care of the girls and me and my troops. Always one to make dinner, cupcakes, just incredible how hard she works for us. She also got a food processor, so along with the juicer, she is always making something.
One of our big announcements is we are moving. We found a 4 bedroom Duplex in Ashland and we move in April 1. I’m so excited to start this new phase with our family, I can barely contain myself. Jess has all the plans drawn up on who gets which room, and how we will get everyone what they need. I have loved the townhouse and the memories there have been awesome but to get so much more space for us and the kids, nothing better.
Jess has some scans in March and as we pray that things continue in a positive direction, she could be down to chemo every three weeks vs the weekly chemo we go to now. That would be just incredible. We know she will have chemo for the rest of her life, but to get down to once every three weeks would be simply amazing.
We hope everyone is well. Thanks again for all the love and support we have received. It’s really been amazing and wonderful.
Loves to everyone…
Jess and Scott
I can’t believe it is already February 1st. Sometimes the time flies by and sometimes I feel like it is dragging along. Monday morning my port gets placed in my chest at 6 am, it is a surgical procedure and I have to go under anesthesia. After surgery, I have to go over to the infusion floor and get 5 hours of chemotherapy. They are going to access my port while I am still in the operating room and not awake so my chemo nurse just has to hook up the tube to my chest. All of this is making me lose sleep. I have been putting off the thought of having the port placed because every week when I have chemo, the nurse removes the catheter out of my right arm/hand and then I go home with just some pain and bruises. NOW, I will have this thing in my chest. It is really hard on me emotionally because it makes everything a little more real for me. I have my moments where I can totally forget about the fact that I have stage 4 breast cancer. Most of these moments are when I am with my children because they have this magical way of treating me like I am not sick. Its like everything is normal for them, they don’t walk on egg shells around me and they are not scared of me. Now that I am having the port placed, I know it is a permanent fixture and it will remind me every single day that I need to have treatment for as long as I live. I do know that it will be much easier on my body physically but I still don’t want it.
Its amazing how my kids have adapted to this new version of me. Izzy (3 1/2) comes home from preschool last week and says “Mama, I told my teacher that the doctors have to open up your chest to make you all better and I will take care of you forever.” My kids are so brave and so strong, I don’t think I would be this strong and positive if it wasn’t for them and their strength. There are days where I hurt and my legs are so swollen and I am really struggling and I just want to stay in bed or lock myself in a room. I have never given in to the pain or the emotions because of the kids and Scott, I find a way to push it all out of the way and do what I have to do. I have my wtf moments where I still cannot believe what has happened to me but there is no time in my life for pity parties. I know that my time is limited now and I have to make the most of it, sick or not. My kids deserve it and I will not let them down. They are such brave little girls and I am so proud of them.
There is one chemo that I am on currently that has some pretty nasty side effects. I was informed that one of the side effects would be my finger nails and toe nails would fall off. I did not think it would be this bad. My finger nails are literally oozing and are green, yellow and purple and SO painful and SO gross. I couldn’t even remove my nail polish on my own, my chemo nurse had to do it. They are lifted off the nail bed and it hurts to do anything. I have to wear rubber gloves most of the time when I use my hands. I would rather have no hair for the rest of my life than no finger nails. I don’t like getting into the yuckiness of it all, but because of this condition now, I cant even type on the computer the same way, I have to use one finger at a time. Once I stop this particular chemo, they will be back to normal.
Since my diagnosis, I haven’t really felt self conscious when out in public but lately when I am with my kids I have been feeling it a bit. I see the way people look at me when I am alone with my kids and someone hears them say “Mommy”. FACT: adults stare more than kids.
Once again, I am humbled and so grateful to the amazing supporters that I have. I am so lucky to have an amazing man, children and family. I know that some are not as fortunate in this way and I cannot even imagine what my life would be like if I didn’t have them. I never take anything for granted, ever. My oncologist likes to tell me “this is a marathon, not a sprint.”
Happy February everyone, make everything count.