Early morning in the Naughton house! Ryan is not sleeping well these days! Maybe he assumes I'm up roiding and should keep me company. What he doesn't understand is this roid time is one of my favorite parts of the week that I look forward to. I love my kids to death, but to be awake and choose what Amber wants to do is kind of fun!
This week caught up with me. Jess was in all weekend and with my girlfriends that came Saturday, I didn't get a lot of extra rest. This is nobody's fault but my own, but I knew if I laid down they would talk about me:) So I tried to hang out the best I could. On Sunday after the walk I did get a nap in and as sisters we just vegged all day. Monday morning I woke up with every intention to go to work. I took my nice long shower and while in the shower realized my muscles ached like an older women from the walk. So I did the quick calculation of what time I would have left if I stayed home. I know I know, with everything going on, is one day off going to hurt? And the answer was no! So I decided to get out of the shower and find the most comfortable lounge wear possible and came downstairs to surprise Jess (my older sister) who had been up with Ryan that I was going to stay home. I took 2 naps that day and that was when it hit me that staying home to regain my energy and laugh with my sisters what just what I needed. Justin didn't have Kindergarten, but at 10 decided he wanted to go to day care to see his friends so he was off to play for the day so we only had 1 little one roaming (when I say roaming, I mean it) the house with us! The rest of my week was smooth. I felt a tad tired but really refreshed.
Thursday was blood work and they actually called which scared me because I missed the call. But the message was my hemoglobin has risen to 9 (last week 8) and my WBC are still just hanging at 2.7, but both were good for me to get my double drugs yesterday Carbo and Taxol. Funny story about blood work....So I will remind you on treatment day I wear a turban, yoga pants and a hooded sweat shirt. There is no need to dress up when you sit in a recliner and are getting poisoned. But Thursdays for my blood work I am going on my lunch. So I have my wig on and am dressed in work attire. Well I had to get a new wig and it came in the mail on Wednesday so Thursday was my first day breaking it in. It is the same exact wig, but of course just like going to a hair dresser for a hair cut, usually it is a tad different. My new one is a tad longer than the last and the bangs need broken in so they go to the side like I like to wear them. I think the cut on my new wigs bangs are a little shorter so they are getting in my face more. So I was a little nervous about this at work on Thursday because like I told the girl that I got the wig from, I wanted the exact same so no one would notice. She is wonderful and has a great shop in California called "Lemonade Locks". I was referred to her from her wonderful aunt and family friend Diana! I could not thank you enough. This wig is a hit and I get tons of compliments! If you know someone in need, I would definitely recommend her, especially if you are in the CA area!!! So back to my story, one of my favorite nurses was doing my blood work and she said "I love your hair" so I think she has noticed the new wig so my response was "yeah, it was time for a hair cut". She looked at me with such confusion that I realized she has never seen me without a wig since I usually don't see her on Thursday when I'm dressed. So I decide to play some more. "My bangs are a little shorter than usual, but they grow so fast, in no time they will be back to where I like them". HA! again, still confusion. She finally said, you were a turban on Fridays so I assume that is a wig. I then came clean and told her it was and explained new so I felt it similar to getting a cut and having to fix your hair. Okay, maybe not that funny, but it was to me!
Thursday night I met with my counselor for the first time. Very nice lady and I think we will do well together. The first appointment she learned about me, my situation, my family, my support group (she was impressed everyone), my fears, anger, what makes me happy. She has decided that I should start weekly so I have a standing Thursday evening appointment for now. I may share some from our talks, but I have decided this is my place to share with her and unless I am comfortable, this will be one of my only private outlets that I have these days so I don't mind if you ask if I'm going, but unless I share, assume things are going well.
Friday well, I did great with my anxiety until right before my appointment. It was meeting with the Dr. day. Dr. Hantel was on vacation so I was meeting with one of his women colleague's who concentrates in breast cancer. My mind started wondering and I felt like I was being set up. What if Dr. Hantel told her he can't fix me, can you go in and give me your opinion....I knew this wasn't right, Doctors do take days off right? Plus, Dr. Hantel is pretty much a straight shooter, I think he would just say his intentions whether I wanted to hear it or not, but this is what my mind does. It can't be positive all the time. The new Dr. was great. She didn't do a breast exam so I have no idea where I am as far as shrinkage. I do know from self exam, but I am not a good judge and am too hard on myself because I feel it several times a day. Her thoughts on not doing one was she has never felt it before so she isn't a good judge. I agreed with that. I did decide it was not a good appointment for Dr. Hantel to miss because I should only see him 1 more time before surgery and my questions were mounting. Who is responsible for me after surgery, up until surgery. What do I need to do to prepare for surgery, what is after surgery and expected of me on follow ups. Will they communicate with Northwestern, who should contact who. So while she was able to answer the questions, they were answered "If you were my patient". I know there follow up is probably pretty standard so I expect what she said will be accurate for me, but she sensed my anxiety I think. She got me. She explained that it is normal to be scared for treatment to be coming to an end. This brought me to tears. I hate crying there. But I am so damn scared of not getting chemo. I went from hating it to loving it. It helps that it is not hard on me (knock on wood) and that I can manage my day to day, but I long for Friday to get more drugs. Although it is poison, I need it. Sick feeling, but she understood that. So it was nice to get that on the table. She then told me the dreaded....I knew I wasn't done with this, she explained that I will need a CT, MRI and Bone scan (If I were her patient) before surgery. I have been waiting and was afraid to ask. This is the worst 24-48 hours of my life waiting for those results. But they need to get accurate size for the surgery and to measure just how well and not from touch the tumor has shrunk before surgery. Also to check that it is still contained. I am scared to death! Part of me wants it done now and the other part just wants to wait. She was going to call Dr. Hantel to get his recommendation. I don't know what say I will get in it. But I HATE this thought! So this caused extra anxiety and thoughts during treatment that I couldn't really concentrate and get through without crying yesterday. It is a fear like I can not explain and such a sense of relief if the results are in your favor, but what if?? So prayers can be started for this because whether they say next week or 4 weeks from now, it is going to be on my mind and there is only way....I need to hear it has shrunk this much and it is contained!
I do not know if I have put this out there, but the form of breast cancer I have is called Triple Negative. It is a non-hormonal form. Only 20% of young women are diagnosed with this form and of that 15% are African American. Some that I know that were diagnosed with this form are Robbin Roberts and the late Elizabeth Edwards. My Dr. and the little research I have done had explained to me my first 2 years after diagnoses are critical. This is a highly aggressive form and can come back with little to know warning. After 2 years, I am considered in the "safety zone" up to 5 years and then I am back to being like everyone else. So this is where my fear stems from. Unlike a hormone induced breast cancer, there are no known drugs that can be plugged in after treatment to keep the cancer away. They are doing studies, but NOTHING as we speak. Hence why diet and exercise HAVE to play a key role in this and my need for chemo. Chemo is the only thing out there that fights this form currently. Scary right? I try to say it is just a name and whether it was a hormonal form or not, I have to fight the same way! So that is what I try to do, but I hope this better explains my fears of what ifs when I finish up and why I think I have an addiction to poison!
I'm still reading this wonderful book "I wore lipstick to my Mastectomy". Anyone that has gone through cancer I think would enjoy. She was 27 when diagnosed and she has touched on many of my fears so I have highlighted them and will try to go back to them when I have a bad day. One that I will share is my fear of what if it comes back or if God forbid Gods plan is for me to leave this Earth before I am ready. Her mother's girlfriend shared with her:
" She explains that since my life now has such a possible ending, it is a wake-up call that I am mortal, which most people are able to deny. Most people stay in jobs they hate, marriages that they are miserable, and just postpone joy because they think they have so much time left to figure it all out. Her friends advise does not make sense at first, but she is very smart and spiritual and when I start to think about it more I do start to realize that the potential of life is freaking me out. If this is all there is, my one shot, I need to get it all in fast, no waiting." I have read this over and over and it is so true. While I remind myself breast cancer is not a death sentence, it could be, so what am I waiting for. Get out there and enjoy.
My aunt Rose Ann has been a weekly e-mail writer to me as well. She like Geralyn Lucas's mothers friend is very spiritual as well. She shared with me some hic-ups in her and her husband Brian's life that they have encountered. Some of the more recent ones, I knew about, but there was one 20 years ago that I think I would have been too young to know. She explained too that you do get through the days. This reminded me 20 years ago they were living with the same fears of what if Brian (my uncle) doesn't make it through this bump in the road. But I look at them and think, wow, I didn't even know about this! And he is still with us! This put the thought in my mind, I can't wait to be 20-30 years out and have someone approach me and say "Hey, I just heard you fought breast cancer when you were 33" and I can say "why yes I did, it was so long ago, but here was my story". Next time I see Brian and Rose Ann, I want to know all about what happened 20 years ago. Even though they have moved on with life and have continued to be a happily married couple that both recently retired and are just living life together, I hope they will share this story with me and more details of how they coped with the days and years and when they were able to put the nightmare behind them enough to move on. You can't sit in a black hole of what ifs. I have to live for today. No one knows their destination! It is easier said than done, but both of the book and the e-mail came at just the right time.
So plan one when I am off of house arrest (chemo, surgery and radiation) I am taking my family to Disney. We have never been and while Justin is a great age, pre-cancer, I thought, I can surely push this off a couple more years so that both boys enjoy it. Well, we are not doing that. We are going to go to Disney as soon as we know I am able to enjoy it to its fullest. Spring or summer. I can't wait to see Justin's smile when we get there and this is what I will focus on for now. Oh I have several other plans up my sleeve, none involve getting tattoos or sky diving or anything too crazy. I just want to enjoy my family!
Well, Ryan is roaming and Justin is now awake. We have soccer and a family event planned later today that I can not speak of because it involves Christmas. Tomorrow will be just rest and relaxation. Probably a run to the grocery store but that is it!
Enjoy your weekend and as always, thank you for your prayers and support!
Love to all!