Journey through My Cancer

What a beautiful and loving birthday week I have had thus far. From my friends visiting to family coming over this weekend. The text messages, cards, phones calls, care packages you name it, I have been so blessed. To know that in some form I have touched someone through the years and they are reaching back out. What love!

To have been fortunate to experience for the most part so much compassion from strangers by being bald. To the perfect stranger at Olive Garden that said, “you are beautiful”. Or to the men that know actually open the door! Yes, there are some people that don’t know how to react or even say the wrong thing, but those are far less the compassionate ones. So this brings me to what I call “Project Baldness.”

I ask each and everyone of you that reads this blog to stop and think before we speak. We live in a society that we must accept all our differences but we are intolerant to each other’s opinions or beliefs. What we need as a society is to go back to basics. Yes basics, RESPECT!

The next time some one upsets you or you are ready to flip off the guy who cut you off. Think that they are bald! Think that they are battling something so great that you can’t even imagine.

Let’s take it to another level. Purchase a bald cap. Yes, I saw they are selling bald caps in support of cancer. Walk around with it and see the compassion you get from strangers. Feel the love that one person can give by simply saying “you are beautiful” or “feel better”! Put down your guards and be compassionate. Don’t wait till someone is diagnosed with cancer or the next big natural disaster. Live today and everyday with compassion for one another. Maybe just maybe you brighten someone else’s day or stoped that one person from hurting themselves.

Cancer is teaching me a lot! And my hope is that I can share what I am learning and somehow make a difference!

Go Project Baldness! I am blessed! I Got this!

So today was Chemo session #4 the last of AC Dense chemo. I have to say I didn’t sleep well with all my questions and concerns.

So Noah takes me to the appointment again as Juan couldn’t take more time off. I didn’t ask Noah to stay cause I didn’t want him to be there for the questions or the access of the port! I had my list of questions and had Juan on the phone to listen in. Cause you know I have “Chemo Brain”.

Dr. Ajaz walked in with all of her 5’0. I told her I had a list of questions and she said ok but I have a plan. She answered about five of my questions and I only had two for her. The plan is today’s session will be the last of the hard chemo. Then on 10/8 I will start taxol for 12 weekly session. She says some people don’t make it past 6 sessions but she feels I will do well. But before I start taxoal I will be doing an MRI to see if the cancer has gotten smaller or larger! Yes, larger…. WT-!

So I head back to my recliner and it is full. I scan the room for a chair and see once again I am the youngest in the room. Then I remind myself younger people get cancer too! I pick my chair and set up my laptop cell phone and get ready to work. Then I sat back and prayed. I thank God for all my blessing and to help me get get through this one! Peace came over me and then the red chemo started its way into my body.

I have to say, this one got me tired from the time it entered me. My blood sugar went up to 329! I felt so tired I had to call in my FMLA time.

Overall it was good! I felt like once again my Dr. had my back and the nurses where awesome. And the older lady that walked up, stopped in-front of me and said “you look good”. I told her, “thank yo and she said “no, you look good bald”! I saw she had a wig so I thanked her again. So yes, I don’t want this desease and I will always be a cancer patient but I carry it with faith, courage and grace!

I got this!

So on Wednesday I went on Sales calls with one of my GM’s. I have to say I was a little apprehensive because he had not seen me without hair. I sent him Bitmoji of myself saying see you soon. It was like a little warning. When I got to the hotel he was outside. He peeked through the window like a little kid. When I got out of the car he gave me the usual greeting and I said, “are you ok?” He said, “yes, why?” I said, “well I don’t have hair and we are going to do calls together.” He said, “you look good plus I have a friend that is going through it and she also rocks the look.” He made me feel comfortable so we left and did our calls.

Then yesterday I had to go see my orthodontist to get my new trays and the ladies at the office where unbelievable. Trisha and Angel started talking about my baldness and asked what I had so I told them. Angel said she had a close friend that has just started to grow her hair back. In walks in Dr. W and she says, “my mom had a red hair wig”, I said, “that’s was her alto ego”, we all laughed. The the girls mentioned a breast cancer walk. Oct 20 we will send you the information. They said it was a foundation for the Dr. mother that had passed. It broke my heart.

As I leave I remember I need a few items so I went to the store and picked up a few things. Mind you I had no makeup. This one lady walks by me and says, “you look beautiful”. I told her thank you and kept on shopping a second complete stranger walks up and says, “I like your hair style, I don’t know why you have it but I like.” I said yeah, “it’s cancer.” She says, “whatever it is you look beautiful.” Then she proceeded to say you don’t have cancer God does! Then a third lady comes walks by and tells me you look good. I was like, “wow” I can’t believe these complete strangers are being so nice. So I go to cash out and the lady at the register starts to tell me about her cancer and how she was in remission for several years and how good I looked.

All this made me think of how we still have compassion within us. Why during 911 or after the natural disasters we can all come together and help on another? And then it came to me, if we all put aside our religious opinions, political rants, gender and racial racism and just be compassionate to one another we could get so much done for our country and our people! All we have to do is respect each other and our differences. If a stranger off the street can be kind it should be easy for the people closest to us!

I will continue to say, day in and day out I am so blessed by my family, friends and even strangers that put a smile on my face every day!

So Monday and Tuesday both started out as great days. I woke up and went for a walk. Monday I was able to do 1.47 miles and worked all day. Tuesday I walked a little further 1.67 miles and at a faster pace. It was good. Then came the call from Dr. Akay, the surgical oncologist. She had received my request for additional information and was returning my call.

My plan had crumbled again in a matter of minutes. I was asking for some sort of game plan and Dr. Akay started with, “well since you live in Florida it won’t be easy. I need you to come back in 2 weeks for imaging, then We will do surgery and try to save the breast. If not then a mastectomy but that will be hard. I would have to place spacers and they would need adjusting, then your drainage tubes and if you have complications. Or you can just go flat for 6-12 months.”

WTF! Go flat for 6-12 months! So I am already walking around like freak with no hair and you want me to go flat! Yes, my hair will grow back and yes being flat is not the most important factor. But it is devastating and overwhelming. I know the most important thing is to get cured and not have it come back. Yes, come back. Having triple negative cancer is more likely to come back within 5 years then any other cancer.

So I asked the Dr. why do you want me back in two weeks and she said well your hematoma should be better and we can try to get a baseline and see if the chemo is working or if the cancer is growing. More good news. Not! Cancer growing. There is a small chance that the cancer can grow. As she tells me that the phone disconnects. I felt like she hung up because I was questioning her. So I call Juan and he doesn’t answer. At this point the tears are flowing like Niagara falls. I call Juan again, nothing. So I call me sister and tell her everything. I tell her that if this would have been dealt with in 2015 it would have been smaller and I wouldn’t have had to go through chemo, and radiation. Then my phone rings again. It was Dr. Akay’s nurse saying the phone was disconnected and Dr. Akay wanted to know if I had other questions. I said no, but what I really wanted to say was, “Dr. Akay sucks!” But the nice me didn’t say it. And she probably doesn’t suck but her bedside manners and personality could use improvement.

So then I reached out to Michelle M. My high school friend whom also had breast cancer. Just the night before she was texting me about my trip to MDA. Michelle was the voice of reasoning as she has been from the start. She said, that it would be hard with the reconstruction and living in Florida. She said to do more research that there are good surgical oncologist everywhere. The tears finally stopped!

I finally got a hold of Juan and told him. He agreed that we need to find another surgen. Maybe at Moffit or locally. So I researched more. Found some more information on Oralndo Health. So I requested an appointment.

I have to say I am proud of myself. I had a melt down and allowed myself to. Then I got back up and I am good again. It is a roller coaster ride but I know in the end it will all be for a greater propose!

I am blessed! I got this!

I wake up on Saturday and couldn’t fight the feeling of sadness. The tears rolled down my face as I say to myself “WHY”?  Then I think why are you crying? Is that 9/6 marks five years without my Mom? And I know if she where here she would be right by my side!  Is it a petty party? Is it that I wake up every morning thinking what will I feel today? Is that I know have to give myself insulin now because of this chemo? Then I wipe the tears and move on. No one can see me cry, no one most hear how shitty cancer is. I most walk with my head up and be positive. God this is exhausting!

I head to see my therapist and listen to her say, be in the moment, it is ok to just be. Be sad, be mad you are entitled, you have Cancer. I wanted to prove that Cancer is ok and can be dealt with dignity  and grace. But the realty is, it sucks! The aches, pains and the horrible taste of metal that consumes your every bite. It is a mental and physical struggle. I still feel fortunate that what I feel is nothing compared to others.

So I leave the therapist and go to have lunch with hubby. We walk in and it’s like I don’t exist. Funny how the younger generation do not know how to handle a bald lady. They can’t look at you in the eye. But it’s ok! I smile and try to make them comfortable. We have a beautiful lunch and my fortune said “Victory is around the corner”! So Juan’s says what corner? If it was only that easy.

So you see I do have bad days! Day’s that come with aches and emotions. But I do see the rainbow and I am blessed. I have so much support from family and friends. I realize that I have touched so many through the years and now they are there to support me. High School friends that have reached out, neighbors that text and send cards, old colleagues that send encouragement. And how I can not mention the support of my husband that wakes me up every morning telling how beautiful I am and how much I mean to him and gives me kisses!

I am Blessed!

The day started with some angst. The feeling of will I continue to do as well as I have been. Will it be #3 that knocks me on my ass. All these thoughts running through my head as I work for 2 hours then head off to my Dr.s appointment.

Noah drives me to the session and as we arrive I notice Juan was there. I was so happy as I thought my results of genetic tests would be back and wanted him present. So the Nurse walked in and said ok I’m gonna access your port to run your test and I automatically start to calm my mind and work through the fear that this access would not go smoothly. But it went well! They accessed to the port and were able to draw the blood without all the flushing and acrobats.  So cheers to the Nurse!

So in walks in my 5 foot nothing oncologist, Dr. Ajaz. She had in her hand my results. And my cancer is not genetic. Which means for my family, great news, yes even my boys. Remember men can also get breast cancer. So for me that means we will not know how I got it and I still have to decide what surgery I will do after chemo. Lumpectomy or mastectomy. Either one does not change this diagnoses but I have to think beyond this and what can happen in the future. Since my cancer was not hormone based this cancer could have grown anywhere so removing the breast doesn’t mean it wont come back. So  there Is a lot to think about. Then I told the Dr. Ajaz that we went to MD Anderson and I can not express the smile on her face. She was so happy and said that was great. I told her that they agreed with my treatment and she quickly said she studied there and that is the best place to go. She also said that chemo and radiation can be done anywhere but surgery and second opinions you want from MD Anderson. I explained that my biggest concern is once I have the surgery they will remove lymph nodes and more breast tissue and if I have the surgery is here in North Orlando they will send the samples out. But if I have the surgery at MD Anderson, there is a pathologist there in the surgery room guiding the surgeon to remove more or not. I think both Juan and I are in agreement on where I should have this surgery.

Off to the back room for chemo treatment. This center is bigger then the one I go to. There has to be at least 30 recliners all setup with IV machines and little side tables. I pick my chair and get ready. The fear begins again. The thoughts of, will I feel the same, will this one kick my ass? But then I thanked God for making this process easier than most and to help me through this next session. Then the red chemo starts to enter my body. I quickly get on my laptop and start working. Again the first real change is the tingling through my face and lips. I never felt it so quickly but it is all ok. I GOT THIS!

On a side note, once again my game plan was squashed. My chemo is longer than I anticipated. For some reason I thought total chemo would be 12 season. No way Jose, my first set of chemo is 4 session then 12 weekly sessions of taxol. So it is so very important to always go with another person to all your visits. You hear one thing and your helper hears something else. It’s like going to church. You get one thing out of it and someone else can get another.

So the positive of today one more chemo down, my Dr. loves the idea of going to MD Anderson and did you hear they found Dorothy’s slippers? Today is a win in my book!

 

Educational info – Youtube vidoe on how they access the port.

https://urldefense.proofpoint.com/v2/url?u=https-3A__youtu.be_rKXmySpexi8&d=DwICAg&c=if2ShhgNBoA_qsKVO5sxhX_pJknXqNywJwHNdEEOAq0&r=xcqz9lTAOWiyYvlbfs4akaLpq4PNzSAmp_qbYCJBuxk&m=O5Y_iH3AX43NjNiu7AZFgV19sT2OGbD4YUnUs-aYp-Q&s=etClAgQhBbsWslQHvr7-kzvxWyO0I2SxjOiP9OuyYX0&e

Our first visit to Md Anderson was a success! I was anxious from the start but as we walked in I started to feel a sense of comfort. From the warm welcome and seeing others sitting there fight cancer. Quickly my name was called and I stepped in to the registration desk. Since I had completed all the forms in advance it was an easy process and the lady was so pleasant. She walked me back to the waiting room and told me I would be called for my vitals shortly. She was correct I was called in and was asked what arm can I take your blood pressure on? I said either. Then I realised I was asked that question because once you have lymph nodes removed you don’t want your BP taken on that arm anymore to prevent Lymphedema. (Thanks Michell M. for that information.)

Lymphedema is swelling caused by a build-up of lymph fluid under your skin.

As my vitals were taken and in walks in the Kim, Dr. Nurse. She was so pleasant and calm. She spoke to both Juan and I and went over my meds and personal information. Oh and Kim also asked if I wanted a Pastor or Priest to call me to talk and pray and also a dietian. Naturally, I said yes. Then Dr. Theriault, Oncologist came in. She asked questions and reviewed some of my records but you could tell she had read them prior to coming in. She asked, “how I was feeling” and I told her, “feeling pretty good”. Then she asked any shortness of breath and I started to cry. She quickly handed my tissues and said, “why are you crying” and I said, “because I have had shortness of breath and it scares me.” I have read up on side effects and shortness of breath. We moved on and discussed my current treatment plan and she is in total agreement. Then she asked me if I had any questions. Which of course I had my note pad with 13 questions and of those 13 questions Dr. Theriault had already answered over 10 of them. Dr. Theriault said she would like me to do some imaging so that they have a baseline from now then again after chemo. She also recommended I speak with the surgeon while here. Naturally, I said yes. So she said go have lunch and we will call you with your next appointments.

I can’t explain how good I felt waking out of that appointment. I remember telling Juan how I felt renewed and refreshed. I felt like my plan was on target. So Juan and I went to lunch then headed back to my sisters since we didn’t hear back. I was called later that afternoon and was given the my appointment time to see Dr. Rachel Akay.

So we head out to see Dr. Akay and for some reason all I could think about was my Mom. I was overwhelmed with sadness. I guess, I was just missing her. I walk in to the Dr office alone as Juan was parking the car and I didn’t want to be late. As I enter once again I scan the office and see the different woman whom are also fighting the fight. I notice the ones with a wig, the ones with the bald head and the one with the baseball cap and wig. I think to myself how this crazy disease effects everyone so differently and it is not one size fits all. I was called up to get my vitals and again asked which arm? I can’t express how wonderful all the staff are at MD Anderson.

Dr. Akay was taking a few minutes longer then expected and in walks in Monica. She is the coordinator that I had spoken to several times. She walked and said she wanted to meet in person. She asked if I was given a pink backpack and so me folders. I said, “No”. So she replied I will have them mailed to you, that way you don’t have to travel with it. Again, awesome personal touches….. Then Dr. Akay walked in and all of a sudden I was fighting back tears. We talked about the different options I have for surgery. Clear margins or mastectomy. Both good options as long as the genetic tests come back okay. Then we discussed mastectomy in detail and what would need to happen. I had a plan in my head and all of a sudden that plan went to SHIT! I thought one surgery and I am done…. Nope if I choose mascetomy it is several operations not one. All because I will need Radiation. I HATE CANCER! And if you know anything about me you know that the word “HATE”. It is such a strong word and I dont liek to use it. But boy I tell you, I HATE CANCER! Oh and she cancelled all the imaging that Dr. Theriault scheduled because she said with the hematoma she would not be able to get a clear image.

So as I leave the office my mind is going crazy. I fight the thoughts and try to calm myself. Not one operation but a few! What type of operation should I choose? Where do I have the operation? Here and go through several trips of going back and forth and all the other nuances that go with this decisions. What is the best decision for me? From yesterday to today my whole game plan and thought process went to hell.

Then I remember how I felt yesterday and thought, yes my plan can change but most importantly what I do know for right now is that my current treatment plan (chemo) is right! And for that I am blessed. I am blessed that my wonderful supporting husband is right by my side and that I have a wonderful sister and family that are right there to help!

I GOT THIS!

 

 

 

 

 

 

So I decided a few weeks back to get a second opinion on my treatment and called Moffitt. Then I did more research and found that MD Anderson was rated #1 while Moffitt was #9. Plus my sister lives in Houston. It’s a win-win! So I made a request online for an appointment. They called within a few days and within a week I was booked and ready to go.

So we are off and ready for our trip. For some reason I was a little anxious about the flight and the trip. We arrive at MCO and naturally I couldn’t check in the night before because I booked on Expedia and I wasn’t checking a bag. What! So this is the     Story on that – if you book economy you can’t do carry on. You learn something new everyday!

As we get our tickets Juan says, “Babe, did you bring your mask?” I said, “yes!” He said, “well put it on now we are at the airport you don’t need to sick.” I have to say putting on the mask was a humbling experience. Not only am I bald looking like a cancer patient but now I am wearing a yellow mask so I look like I have some kind of infectious disease. It is amazing the reaction of others. Some where so kind and others just stepped away. This one lady was standing behind me and when she saw me she quickly turned around and walked away. I wanted to tell her I wasn’t sick but she walked away so fast. I will say it is a great way to gain your personal space in public areas! You just got to find the humor in things or you will be in tears!

Shout out to the flight attendant that told me as I left the plane, “you are beautiful”!

So the day started off pretty good! I attended my Monday morning book club and felt blessed to be surrounded by a group of ladies (I call them the Redtail Ladies) that truly want to share their love of God and learn from one another. We are studying The Fruits of Peace! How perfect can this study be. It touches me in so many ways but today was especially touching as we discussed the divide between the Jews and the gentiles. We talked about the separation between classes, races, etc. How this would cause divide in homes. This was perfect!

Off to work I go! Made some calls and worked on a few items that needed to be completed. Then off to my follow-up appointment. I made sure I was drinking water and was somewhat relaxed so that can access the port and run more test. All the ladies greeted me so kindly and said how pretty I looked. One nurse said “you went there”, I said yeah I had no choice and we laughed. There was actual joy and comfort in a place of sadness…. They told me how well I was doing and drew my blood. This was the first time we had no issues with my port. AS soon as she accessed the port and flushed the line I could taste she was in… You see when they flush the line you can taste the saline. YUCK! Oh and once again I can’t leave the office without doing a pregnancy test! We joked about that one too! I told them I wanted to trick my husband and have a pregnant lady pee on the stick. Would that be funny…

After a very successful follow up visit I  get back home to work and get the mail. I received yet another letter from Aetna. Or shall I say another denial from Aetna! Yes, they now want to deny the genetic testing. The letter stated that they will cover the Brac testing but not the other genetic testing. REALLY… First they deny my Pet Scan two times. Then they deny the Neulasta and now the genetic tests. Do I not have enough to worry about…. Oh and let me add that my FMLA was approved but only for one day a week during my chemo session. You just can’t make this stuff up. I will say and will continue to say I am blessed! I am blessed that I have a great Dr. that has pushed for the insurance to cover the things she feels is needed. She has had to have peer to peer calls and explain why I need a Pet Scan, why I need Neulasta. Thank you Dr. Bursha Ajaz!

Now if I could only get my FMLA settled. GOTTA LOVE THE PROCESS!

The Hair is Gone!  So since my second chemo my hair started to fall out! Each morning I would wake up and just cry as I brushed my hair. On Wednesday night I finally decided to have the discussion with the family that the time is coming that I must shave my head. Right away I go the support from Noah. He said “come on let’s do it now”. I told them that they did not have to shave their heads in order to make me feel better. I told them that losing my hair was painful enough, I didn’t want them to have to feel my pain too! Then Juan said, I think you should wait, it’s late and you won’t be able to sleep. As much as that was true I also realized this was just as hard for him as it is for me. So I decided it wasn’t the right time.

It is now Friday, and it had to have been the most emotional day in a while. I walked almost 2 miles and all while crying. I decided today is the day. Juan had texted me that he bought a new pair of clippers for me. So throughout the day as I worked I knew today would be the day. Juan came home with the clippers and I went to the bathroom. He quickly followed me and said what are you doing. I said it’s time! He quickly said I’ll help you. I wanted to do it alone and not put anyone else through this missory but he was there. Right by my side. I could see he wasn’t ready but I was. After the first or second swipe the tears stopped. I had  a feeling of peace and calm. I actually felt free. I had read before that women get a sense of freedom and let me tell you that was exactly what occurred! It was like “fuck cancer” I so got you! Then I looked in the mirror and said ok it isn’t that bad. It was kinda comical cause as Juan shaved me he would say, “it doesn’t look bad”. I wasn’t sure if he was saying it for himself or for me but I noticed he was feeling much better about it!

Juan and I had dinner plans with some friends in Orlando and Juan said are you gonna wear the wig? I said, NO! Then I said wait why do you feel uncomfortable. He said no ma’ma you look beautiful! I said well I don’t think so but… so he said call Tani. I knew Tani was away celebrating Joeys birthday and I didn’t want to interrupt or ruin her weekend. Plus I knew she would be kind to me and tell I looked good. So I quickly said I know who would tell me the truth! Let’s call Freddy. So I FaceTime Freddy. I can’t tell you what a delight experience. He had the biggest smiles and said it looks good. You look good. The hair sometimes gets in the way of beauty! Thank you Freddy!

So off to dinner with no wig! I felt so empowered. I thought ok people are gonna look at me and I’m gonna feel like shit! I will tell you. I felt good, I felt confident and I felt pretty! I Am Blessed!
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