My Journey… My Detour!

To say that these last four days have been very stressful is an understatement. I feel like this detour is never going to end. I was hoping and praying for all of this to be over quickly.  In my mind, I thought: chemo, surgery and then I live happily ever after. However, that is not the case.  My journey isn’t that simple. It looks like it’s going to drag on for the next year.

I met with my surgeon, Dr. P, on Tuesday and I didn’t like everything I heard. I cried! I was informed that I will have to have radiation. The amount of radiation still hasn’t been determined. But it’s preventive and it’s the common practice when it comes to breast cancer. I will also have to have all the lymph nodes on my right side removed. I thought they would only have to remove that one lymph node that tested positive. I prayed that the chemo had made everything shrink. I am not sure how much people know about having your lymphnodes removed, but you can develop lymphedema, which causes swelling in your arm. I will have to wear a sleeve to help the fluid drain back into my body. I know cancer survivors who have to wear those sleeves and I know they are super annoying. I am a righty and I am not sure how much this will effect my lifestyle. I will have to take precautions with my right arm forever.  Removing all of them could mean up to 21 nodes. The only reason I have to be okay with all of this, is because with the type of cancer I have they have to be aggressive or the cancer could return and spread to other lymph nodes.

The positive news is that my surgeon can save the skin and the nipples. The tumor is far enough away from the skin, which is good news because it should help the plastic surgeon with reconstruction. If Dr. P can save the sack then I won’t have to remove skin from other parts of my body to reconstruct the breasts. However, I met with the plastic surgeon on Thursday. I didn’t know that I would have to wait 6 months after radiation in order to put in the final implants. That just prolongs this whole journey, which made me so angry.

February 16th will be my bilateral mastectomy. Richard seems to be more excited then me because after that we are hoping the doctor can tell us “I am cancer free”. But in my eyes that’s still just one more step towards the finish line. There are still a lot of things to consider. The plastic surgeon suggested using my own tissue instead of getting implants. He said that implants can get hard and there is some maintainenece associated with that. Also after radiation the tissue gets damaged and the implant might not feel natural. But in order to use my own tissue he would have to cut the tissue from my back or my stomach. I really don’t feel like cutting up my body more then it has to be already. I don’t want more scars and I am thinking about the recovery time associated with all of this extra stuff. He said that the breast would feel more natural and it would last for the rest of my life. It is something to consider, but I don’t have to decide now. I have a good 6 months to think about it.

TODAY.……So now let us get to todays news.  Richard took our dog Camila to the vet because she was limping. We thought she might have hurt her leg or was developing arthritis. My poor husband. God Bless him. He had no idea how to tell his wife, who has breast cancer, that now our dog of 6 years has a tumor. I can’t even make this stuff up. I don’t know who I wronged in my life. So now my dog and I have cancer. It seems surreal. I am living in a timewarp. Someone please wake me up from this insane nightmare. The vet couldn’t give us a timeframe or tell us what her life expectancy will be. He said the type of tumor she has is rare. We could take her to an oncologist and she could get radiation but what the hell. I don’t even want radiation. Why would I put her through that!!! We might have 6 more months with Camila or we might have a year. Everything is up in the air. Thank god she is not in any pain, but they did give us meds to control the nerves that are causing discomfort in her leg. The only thing that is comforting Richard and I is that we adopted Camila from the Humane Society and we have given her a great life. Since she is a PitBull we don’t know what type of life she would have had if we hadn’t adopted her. She was our first child. She is family. All we can do is make her comfortable and pray for the best. But how do I explain this to my kids? Leo is too young, but I can’t tell Sebastian that Camila is sick. That would terrify him, especially since mommy is already sick.

It’s weird because I swear Camila knew I was sick before I did. She was sleeping next to my side of the bed for months. I still can’t believe my baby girl is sick. I don’t think you have an be animal lover to understand how much this hurts. While I am doing everything to get better I have to watch a part of my family die.  The other day Richard finally told me what all of this has been like for him. He said it’s like watching the person you love die. Essentially that is what the chemo is doing. It’s killing me while killing the cancer. So my poor husband has to now watch his wife and dog die a little everyday.

My god! I don’t even know what to do with myself. It’s like being kicked in the face while I am already down. I am using ever fiber in my body to stay positive and to stay strong, but I am freaking exhausted. I have one more chemo to go…  Everyone says Chemo is the hardest part of this journey, but I don’t think they have considered all the other emotions associated with all of this.

I am grateful I have a few things coming up that are giving me something to look forward. Soon, I will be having my girls weekend with my 3 oldest friends. Kio, Nichola and Alison I am grateful for you ladies. I also have our cousin Alex’s wedding in Puerto Rico. I can’t wait to escape for a few days. Our 8th wedding anniversary is coming up, but I will be recovering from surgery. So I will planning my “I Kicked Cancers Ass” Party.

 

 

 

 

A very special “Hello” to all my Ninjas out there! Richard reminded me this weekend that I haven’t written a blog in a while. Sorry for slacking, but last week was kind of rough.  My numbers were low, so now my doctor is forcing me to get two shots for my immune system after every treatment. Those shots really take a toll on my body. I have been so tired and the little energy I have I try to save for the boys. But I need my numbers to be at a certain level or else they won’t let me do chemo. At this stage in the game, that’s not an option for me.

Plus, the neuropathy in my fingers has gotten worse ( If you don’t know what that is, it is weakness, numbness, and pain from nerve damage, usually in the hands and feet). It’s not very fun to type or to text these days. I tried to tickle Leo this weekend and I couldn’t even do that. Which made me sad. Plus, I feel like it has spread to my arms. I have this weird sensation in my forearms. Oh and I think I figured out what is going on with my finger nails. Its kind of nasty, but it seems that the skin under my nails is turning into blisters and that is what’s forcing the nail to detach. My nails smell and look horrible. It’s very painful and it’s no longer just my thumbs, now my pointer fingers and middle fingers have decided to join in on the fun. WTH!!!

Okay, so enough of the complaining…. . lets focus on the positive. I have two more chemo sessions to go. Thank you God! I have an appointment with my surgeon Dr. P tomorrow. I am hoping he has some good news for me. I am sure he will order some tests to see how the tumor is doing. I am praying that the cancer is gone, or has shrunk. I am praying that he tells me I will not need any radiation. I also have an apportionment with my plastic surgeon on Thursday. He’s the guy that is going to give me those new perky boobies that everything has  been talking about. It seems that is the only positive thing out of all this. I guess I will have to invest in some new bras and shirts.

Richard went with me on Friday to get my shot. He was so funny. When we left the Breast Cancer Center he was saying “my wife is a celebrity”. I laughed and a said I really don’t think that’s what I was trying  to do, but hey if it works then so be it. My oncologist, Dr. M , was very sweet. She was telling my mom last week how my shenanigans every week don’t just help the staff, but help the other patients. I really hope so. I hope they see this crazy lady and it makes them laugh. I pray that when they see me they see Hope… they see someone that is trying to make the best out of a bad situation. I hope they see a warrior and it gives them the courage to be strong and to fight!  Lord knows I am tired, but I refuse to give up. Its just not in me give up. I am way to feisty!

Tonight I went to yoga. It was great. I really feel the difference in my body. I have met some awesome people. One of my nurses goes and she was educating me on nutrition and what life after chemo is going to look like. It really is a lifestyle change. Nutrition is the key!

I want to end by saying thank you to everyone that has supported me through this journey. Honestly I cry everyday because I am still amazed at all the love and support I have received in the last 6 months. All the prayers, the messages, the gifts I have recieved in the mail. I truly feel blessed to have so many people in my corner. You have all helped the time go by faster. You have made me laugh, cry and have put a smile on my face. I hate that I have to paint on my eyebrows every morning but at least I can laugh about it.

This past Wednesday my brother and father joined me for chemo. It was nice to have the first two men I ever loved join me. We were going to dress like firefighters, but it was a mission to find the same thing for all three of us to wear. My brother Kenny had T-shirts made for us to wear and a pink mustache for me. It was great. The nurses and my doctor loved it. We played Uno and they had no mercy on me. They had no problem beating me eventhough I was drugged up on Bendryl…. LOL We also took scratch off tickets for all the staff members at the center. I wished them all good luck and hope that someone wins something.

My numbers were good this week, so I didn’t need a shot to boost my white blood cell count. So now we are down to three more chemo sessions. Thank you God! My next chemo date will be my mom. We need a theme.

Christmas was great, but exhausting. It took all the energy I could muster to keep up with everything. My boys had an awesome time and it was great to be with my family, but by 6pm I was over it. It was a very emotional day for me. I had a few break downs throughout the day and cried. I was grateful for the time with my family, but at night when I went to rock Leo to sleep I cried and my mind took me to a very dark place.  I thought “My god, what if this is my last Christmas with my family?” It was the first time I had ever tought of dying and not being there for my kids. The thought broke my heart and I squeezed my son a little tighter and I prayed. I prayed for God to have mercy and to give me more time. That night I laid in bed with Richard and I told him what had happened. For the first time since I was diagnosed I allowed myself to let go of everything. I felt like I had released a years worth of tears… I couldn’t control the tears. They just kept coming and Richard just held me and let me cry.  Afterwards, Richard thanked me for being honest about my feelings and shared with me that his mind had gone there along time ago. He assured me I wasn’t going anywhere and I appreciated that. He’s a man of faith and I know he’s had his own conversations with God. I know this is normal and part of the journey. How can you not question your immortality when you are diagnosed with a disease that has claimed so many lives. I have firsthand experience watching people I love die from this disease. It’s not pretty and it’s not how I want to leave this earth.

I know I must make this look easy, because people see me smiling, but it’s not. For those of you that have a family member battling Cancer, please have some compassion and consideration for them. This disease not only takes a toll on your body, but on your soul. Everyday is something new. It’s a new pain, a new discomfort, a new struggle, a new burden and a new emotion. Don’t pity us, just be sensitive to our mood swings and if we need to cry then just let us cry. Don’t be scared to say the wrong thing. No one expects you to have all the answers. Just be present in the moment and be available. Don’t treat us any different. We already feel “different”. We just want to feel like our old selves.

Honestly, I don’t really like the word “survivor”… The word doesn’t feel like a compliment. When this is all over with I will consider myself a “Warrior”…..

I have been contemplating all day whether or not to write this blog. I kept thinking it might be too personal or that it showed weakness. But then I realized that someone out there might be feeling the same way and something I say might make them feel at ease… so here goes:

It’s AMAZING how much guilt you feel when you get sick. I feel guilty that my kids and husband have to go through this. Guilty that Richard has to take on more responsibility to pick up the slack for me. Guilty that my family has to see me this way. Guilty that my parents have to come every week to help me clean the house, cook, and take care of the kids. I never really thought about it until this weekend. I didn’t even realize it was something I was feeling. I knew at times I would get sad, but I never thought that a feeling of guilt was something that would surface. As a mom you already feel such a sense of guilt when you can’t give your child something they want. Or when you have to work and don’t have the time to spend with your kids. Or when you want to do something for yourself, like go to a yoga class.  “Mommy guilt” is real! I know my mommy friends can relate. So now imagine adding a “sickness” to the mix. Mommies are supposed to keep the family together. So what happens when mommy gets sick? We are not supposed to get sick. Who has time for all that? So I try my hardest to keep it all together. I wake up and make breakfast and lunch for the boys. I dress them and take them to school. But what about the days when I am too tired to cook, to give them a bath, or to read them a bedtime story?

This morning Sebastian asked me if I was still sick and for how long I was going to be sick. I had to fight back the tears. I just told him that hopefully after Christmas mommy will be feeling better. There is no easy way to explain to a 5 year-old that after Chemo mom will have to let her body recuperate for 6 weeks before surgery. He doesn’t have any concept of time. But the guilt settled in again. I know my boys miss me. I miss them too. I hate that I can’t take Sebastian to his soccer games on Saturday because I can’t be out in the sun and I can’t risk getting sick. I hate that I can’t take him to the movies and I don’t want to wear a mask in order to do it. I hate when I lose my patience because I am so tired or frustrated. I even feel guilty about work and not being able to perform my job to the best of my ability.

So how did I fix this? Well I prayed about it. I asked God to give me peace. I asked for the courage to forgive myself. I went to Yoga tonight and I set an intention. I think I have earned the right to take a minute for myself. I have earned the right to take care of myself and make sure I heal my mind, body and soul, so that I can be there for my children in the long run. I acknowledged the emotion, forgave myself and let it go.

Something else that has stuck with me is that I met someone, who told me that some people/cultures believe that when you get Cancer it’s because your soul wants to die. I don’t know how I feel about that???? I think the thought of that just adds more stress, guilt and sadness. Before Cancer my soul was content, grateful and happy. I felt completely blessed and Thanked God everyday for this amazing life. It’s hard for me to believe that God would grant me all these blessings to just take them away. My God doesn’t work that way.

I am sure along this road I will experience a number of different emotions. Some good and some bad. I know I will learn something from this whole experience. I am allowing myself to take it all in. I will allow myself to feel it all, but I will not allow myself to feel guilty over something I can’t control. Like in yoga, I will inhale all the good and exhale all the negative emotions that don’t belong. Good-bye Guilt! Exhale….

 

 

Yesterday, November 9th, I had my 2nd Taxol (if you don’t know about chemo meds, you can google it). I have 10 more to go. If all goes well January 18th will be my last chemo. So for my prayer warrior, please pray for that date. Pray that my immune system is strong and capable of handling these drugs. Please pray that the next 10 weeks go by fast. It hurts me to say that because the holidays are coming up and I would love to enjoy them with my family. I would love to freeze time and enjoy watching my boys on Christmas day, but I may not have that luxury. I want these next two months to fly by so that I can move forward with surgery.

Richard was my “chemo date” yesterday. I joked with him and told him he was a boring date. He was so quiet. I think we were both just tired. Fuck you daylight savings. It was not meant for parents. My children were up at 4:30AM ready to go. We were also tired and upset about the election. Even at my cancer center the nurses were talking politics and I was so not in the mood to talk about the fuckery that this election has caused. I am fighting for my life here people, so Trump is the last person on my mind.

So far the side effects of the Taxol have been bearable. I still feel tired, but my crazy  butt was at work today. Work is a good distraction. It beats staying at home feeling sorry for myself. I did have some insomnia last night. I couldn’t fall asleep until 1am. I think it’s the steroids. Since they are messing with my hormones, I have been having  “hot flashes”. I wake up sweating and I get these weird cold and hot flashes on my scalp. The neuropathy is real. I have already started to feel the numbness in my finger tips. The only thing I can do is take vitamin B6 and hope it helps.

I know a lot of people have had questions about my genetic test being negative, so let me explain. Only about 10% of people actually test positive for the cancer gene. There are about 20 genes they are looking for. The reason it’s a GREAT thing that I am not a carrier is because I don’t have to worry about passing anything to my boys. Another reason is because if I were to have tested positive the likelihood of me developing ovarian cancer later on increases. Most women who have breast cancer have to worrying about developing ovarian or cervical cancer after dealing with the boobs. I don’t know about you, but I rather not have to have a hysterectomy at 38. So now my chances of  beating this have improved dramatically. Amen to that! I have decided to celebrate every victory in this battle, big or small its a slap in cancer’s face! I am all about slapping this SOB as many times as I can.

 

On Saturday, October 29th was the Making Strides Against Breast Cancer Walk (American Cancer Society) in downtown Ft. Lauderdale. It was my first time participating in this walk. I usually participated in the Susan G Komen Walk in Miami. I would walk every year for my dear friend Barbara Rodriguez who passed away from breast cancer. This year I walked for me! It still feels weird saying that. I was and still am overwhelmed by the amount of support I received. Even Richard mentioned something to me about how many people walked with us. It was a beautiful thing and I felt completely loved and supported.

I am truly blessed to have had my family, friends and coworkers there to support me. My parents, my sister Lisy and my niece Inyla and nephew Iram were there in full support with their pink hair. My nephew Eje was not able to make it, but he was there in spirit. My brother Kenny was also there in spirit.

My Big Brothers Big Sisters family is amazing!! They created the team “Myra’s Minions” and made T-shirts.  Laura, Ofelia, Smith, Kurt, Trudianne, and Jen you are all rock-stars. Thank you!!! One of my volunteers from BBBS Joan, was also there. My friend Mia, who worked with me at the BBBS Miami office and her Little Likem came out. I matched them years ago and it was great to catch up. My friends Luna and Beatriz drove up from Miami. My friend Greta and her son Joel drove from Orlando. Richard’s Cousin Alex and his fiance Tyra flew in from Massachusetts to walk with us. My sister-in-law Alejandra joined us and represented for Richard’s family since my brother-in-law was working. My friend Barbara’s son (the one I mentioned earlier) Eric and his wife Kristi also drove up from Miami. They were my family when I first moved to Florida. I almost cried when I saw them. It was special to have them there supporting me. My dear friend Cindy and her family also drove up from Miami. I even had a blast from the past when my high school sweetheart Jose showed up to join us. I am proud to say that we raised over $2,000 for the American Cancer Society!! 🙂

I did have to explain to Sebastian why we were walking. I told him that we were walking for other women like mommy that are sick. I told him its important to help people that are sick and the money we raised is going to do just that. He had a few questions,  but he seemed to understand.

We took some great pictures and despite the sketchy weather we all made it. I wore a hot pink wig and rocked it all the way to the finish line. I didn’t know if I would have the energy to walk the whole thing, but I did it! That was my BIG F-U to Cancer. If cancer were a person I would have body slammed him, like a WWE wrestler. That’s how empowered I felt.

The day was complete when the Minions showed up and we were able to take pictures with them. It was the perfect ending to our day. Thank you to everyone that donated to my page, or who donated in my name. I hope the money helps someone struggling with cancer. May the funds provide them with the services needed and give them hope. This is definitely a battle that you don’t want to fight alone. There are good days and bad days. You have to take advantage of the good days. Thank God today was a good! I pray for more of those good days.

Yesterday, October 27th  I had my second chemo teaching.  That’s when your Medical team explains to you the dos and don’ts, and what the side effects will be of your new chemotherapy. I just finished my round of AC. Next Wednesday, I start my “weekly” 12 rounds of Taxol. I refuse to google the side effects of Taxol, because I don’t even what to know what other people have experienced. It’s scary and I was already nervous about this next round,  but my nurse told me that I have done great so far and this round shouldn’t be so bad. There are still side effects, but I shouldn’t feel the same fatigue. It will also be a shorter infusion, so only 2 hours at the hospital. But I am still nervous because now it will be weekly treatments. I don’t know how my  body will react now that I don’t get a break. The good news is that I won’t need my LoJack. That Neulasta shot that is so annoying and causes so many body aches. I still have all the food restrictions and I still have to be careful that I don’t get sick. My Medical team seems to be very optimistic. Since I am young and healthy I should be able to tolerate it. My “Prayer Warriors” out there  please continue to pray for me. Pray that this is a walk in the park for me. Just a slight irritation from my regularly scheduled program.

Once this is all over I just want cut off my boobs and get new ones. LoL I am not kidding. Seriously! Get them off of me so I don’t need to inject poison into my body anymore.  I have been super emotional the last couple of weeks and I know its because they are messing with my hormones. I feel overly sensitive. I tear up all the time. I just can’t wait for ALL of this to be over so I can just enjoy my life and be “me” again…

I get so annoyed when I see a person smoking. I just want to slap them. Don’t they know the harm they are doing to their body? (sorry to my mom and sister that are both smokers, but I might just have to slap them if I see them smoking). I have never smoked a day in my life and I got cancer. What kind of shit is that? I never play the “cancer card”… but damnit, maybe I should start! LOL Every time someone  upsets me I will just cuss them out and blame it on the cancer. Isn’t psychotic rage a side-effect? I forgot to ask my doctor…ha ha

I get upset seeing people stress out about silly things. Life is too short. I just want to take it all in and enjoy it all. I guess that’s the ironic part about being sick. You take the time to take a step back to reflect on the things that are important. I don’t stress about the silly things and maybe I let my boys get away with little things, but why not. They only get to be kids once, so let them enjoy it. My brother sent them gift cards to The Build-a-Bear Workshop and they had so much fun making their new Star Wars friends. Richard was so stressed about what they picked and I told him to just relax and let the boys have fun. They don’t get to do that everyday. Let them pick whatever they want. If mommy is sick then why not cut them a little slack. That should be a rule!!!

There is no school today, so I brought Sebastian to work with me.  Leo is still having a fun filled day at preschool.  I feel like Sebastian has been a little emotional lately. I feel like all of this might be taking a toll on him. I thought it might be nice for him and I to have some alone time together. We are going to have a lunch date this afternoon and he’s had a great time at my job. This morning in the car he asked me why Puerto Ricans celebrate 3 Kings Day. I explained to him that it’s a tradition and one day when he’s a dad he will celebrate “El dia de los Reyes” with his kids. Just the thought of him being all grown up got me a little choked up. But then he said “I’m going to miss you when you die”.. Waterworks!!! I lost it. I couldn’t hold back the tears as I told my son that ” I will be around to see him become a dad one day”……