How Could You Help? I wasn't sure!

When word started to get out on what was happening to me, many family and friends just wanted to help but didn’t know how. The problem was neither did I at the time!

Now looking back, I think it was most helpful when friends or family just did something instead of asking. For example like when my cousin dropped off dinner or when my friends made a Facebook page for me to deliver updates easily and quickly as well as ask for prayers. Or when my aunt and uncle dropped off frozen yogurt for dessert or someone sent a gift card in the mail. I remember when my uncle mailed me a check to help with medical bills and when my aunt bought me a silk robe so I could feel pretty after I shaved my head. I had a friend drop off a new soft towels and soaps to make my shower more special. All of these things were so kind and thoughtful and I did not have to ask for any of them.

I’ll always remember the friends of my girls who dropped off a card or went out of their way to ask how I was. It’s the little things like these I’ll never forget!

XO

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HER2 WHAT?

Like you, I had no idea what it meant. I had never heard of it and had no idea how it would affect my life. One thing I learned is that, NO two breast cancer cases are alike. There are many factors to consider, one being your HER2 status. HER2+ or HER2 positive breast cancer is very aggressive. Why? The HER2+ cancer cells have a lot of receptor cells and these receptors send a lot more signals to the cells to grow out of control, which is why it makes those tumors aggressive. It used to mean your chances of survival were a lot lower than other women. Fortunately, recent advances in cancer research have led to the development of targeted treatments for HER2+, the number one being a drug called, Herceptin. While Herceptin is a game changer, it also takes a full year to complete. There is no way around it and for someone impatient like me, that’s brutal. I also later learned why my oncologist never gave me any long term statistics. The drug was so new studies didn’t really exist past 10 years.

So there I was, every three weeks for a year I had an infusion of Herceptin. There are some possible serious side effects such as heart failure (that is why I had an echocardiogram every three months during that year), and less serious but still annoying side effects such as, a constant runny nose, muscle and joint pain, mouth sores and fatigue. I was doing quite well on it but that last few months I became both mentally and physically exhausted.  

The doctor who developed Herceptin still works for UCLA and I hope one day to personally thank him for playing a huge part in saving my life!!

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Sex and Cancer

Why is the thing we think about most talked about the least?!?

“It’s not that important, at least I’m alive.”

“I’ll do whatever it takes to be here.”

Really?! I’m sorry but I had enjoyed sex before cancer so why should I not now? If all goes well, I still have a lot of years left on this earth. I’m married and sex is a pretty important part of our relationship and should be a part of any healthy relationship.

It was shocking to me that not one of my doctors addressed this topic, especially because my husband accompanied me to every appointment! They have discovered all kinds of cancer treatments and hormone medications that will prolong my life. Unfortunately, they also cause numerous side effects and while some were brought up others were ignored, the biggest one being, how it would affect my sex life.

Many cancer treatments cause low sex drive and diminish your desire to be with your partner. Well, this is a pretty big deal to me!  Vaginal dryness during chemo was extremely painful but I guess it was assumed we weren’t having sex. Were we not supposed to? Was it dangerous for my partner? Not one doctor said anything about this. I also had a year of targeted immunotherapy. Were we supposed to not have sex during that year too!? How could this topic be completely ignored?

Many women I have personally spoken with have little to no sex drive after treatment. On top of this, we are dealing with weight gain, depression caused by the medications and by the reality of our situation. We have scars on our body, numbness under our arms from lymph node removals and our breast tissue has been cut off and have no feeling. It’s difficult for our partners. Our breasts might look like real breasts but they do not respond in the way that they used to. Our partners want to touch them, kiss them, but it does nothing for us. It’s difficult for the relationship. Others who have chosen to remain flat are dealing with a new body image and those who have also lost their nipples can feel differently about their attractiveness and body image.

When researching this topic, I read, “Not all doctors and nurses are comfortable discussing sexual issues and practices. Most doctors don't routinely ask about your sex life. And patients don't usually begin to discuss their love life with a doctor who hasn't mentioned it…(So) Nobody's talking!”

CHEMO BRAIN IS REAL!!

It’s crazy but it makes sense! If they are killing your “bad” cancer cells than they are also killing your “good” brain cells. Chemo brain affects different people in different ways. Some patients suddenly find themselves driving to the wrong place or getting lost, others become forgetful and confused.

What happened to me? Well, I’ve always been really good with names but during chemo and STILL TODAY, I often can see the name in my head but it won’t come out. I literally have to focus and concentrate going through the alphabet until the name comes to me. It’s terrible. It’s not just with people I see occasionally either, it happens with anyone and often it’s friends I see on a weekly basis! I’m hoping and praying this gets better with time but since I’m also getting older, it’s not looking too good!! LOL!

 

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LET’S TALK ABOUT IT…OR NOT!

It’s funny how different people react to hearing such scary news! Some want to talk about it but most don’t. I did want to talk about it but I also knew my friends who weren’t talking about it didn’t know what to say… and that’s understandable. I think some wanted me to forget about it for a while so they would not bring it up. Unfortunately, at that time, I could think of nothing else and acknowledging it would have helped. I heard from friends I haven’t talked to in over 20 years and that was such a joy! It really affected some people and I could see and hear the pain they felt because I was suffering, and that was very heartwarming!  

My advice would be to let the patient decide. It’s always nice to ask someone how they are doing and after a few follow-up questions you will know whether or not they want to continue the conversation.

I’m always here if anyone needs to talk!! XO

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BREAST CANCER-THINGS I WANTED TO SAY BUT NEVER DID

 This was written during my treatments a few months after my diagnosis.

  1. To the doctor who gave me the news:  You read me my biopsy results like I knew what you were saying. Remember you were speaking another language to me, words I never heard before, especially when some of the words are in Latin!

  2. To the nurses at the Breast Center. Many of you have hearts of gold and I thank you for that, especially when I would start to cry and you responded with, "it's OK go ahead, you need to do that."

  3. To the nurses and staff everywhere:  Remember when I walked in with a smile on my face? I was pretending! Even when I was smiling I was hurting inside. Just days away from my double mastectomy and you acted like this is something you do every day, which IT IS!!!!! But not for me!!!!! Not for any of us walking in your office. 

  4. Thank you to my oncology and radiation doctors who talked with me with my clothes on. You respected my dignity and were considerate about how many times a doctor had examined my breasts in the time span of one week!

  5. To my Plastic Surgeon:  I was very nervous walking into your office. But you were so kind and explained everything to me and all the nurses were so sweet. You never made me feel like I was being rushed or you didn't have the time for all of my questions. Thank you. 

  6. To my OB/GYN. I have nothing but good words and praise for you!! Thank you for delivering two of my three girls and for taking such great care of me for so many years. You pushed me get the mammogram. You will be greatly missed in your retirement. Hopefully, your professionalism and kindness will be passed on. 

  7. To all the doctors and nurses who said, "I was lucky. I caught it early. I was going to be OK." I am so thankful for the early diagnosis and I know I am going to live and for that I am so grateful. However, it is not easy accepting the two "easy" options. 1. I can have two lumpectomies followed by weeks of radiation (and your breasts won't look or feel the same). Or 2. I can have a double mastectomy!

  8. To my family and friends!! Your love and support was overwhelming. You made me feel so loved and I can't thank you enough for your prayers, phone calls, cards, texts and special gifts!! I hope you understood when I didn't call you back, it wasn't because I didn't want to, it was because I couldn't

THE SIDE EFFECTS THEY DON’T TELL YOU ABOUT...

It’s bad enough you are going to lose your hair, right?! But sadly, the doctors brush over the many other side effects that can also be very difficult to manage. Hair loss is not only on your head. You lose ALL body hair, including eyelashes and eyebrows! Your nails become brittle and you may even lose a few, I did. Some, like me, suffer horrible mouth sores. Mine were so bad I could not eat or swallow from the pain in my mouth and throat. I also experienced horrible nosebleeds during chemo. They would last for 20-30 minutes and there was nothing I could do to stop them.

Of course, the nausea is bad and expected and also many suffer from neuropathy (tingling and pain) in their fingers and toes that can last for many months if not years. Ultimately, I was really one of the lucky ones, my symptoms were mild compared to others!

For my cancer survivors who follow me, what did you experience? What did I miss? For those just starting chemo, please let me know if I can help you in any way!!!

 

A Year of What?!! HELL NO!

When I found out I would need not only chemo but a YEAR of treatment I wanted to run and hide! What are the doctors thinking? Who has the time for a year of doctor visits, iv infusions, multiple surgeries AND chemo?!? Well, turns out, I did!!  I went to one doctor or another for 18 months.  It was awful!  One time I had 5 doctor appts. in one week! I was lucky! I work part-time, very flexible hours.  I truly don’t know how women can do it working full-time. I’m in awe of all of you who had to do just that.  XO

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LET'S BE FRIENDS!

One of the positive things about having cancer is the new friends you make. Friends who know exactly what you are going though, friends who can laugh and cry with you. I met some wonderful women through a closed Facebook group and at my chemo facility. These women have truly been there for me. Can you believe I never sat through one treatment alone! A year of infusions and not one time alone! I’m thankful that these beautiful survivors will now be my pink sisters for life.

I remember walking into my first chemo and feeling very scared and alone. I looked into my mother’s and husband’s eyes and saw the pain they felt as we all sat there not knowing what to expect. I saw women with no hair and heard some talking and even laughing. Was that even possible? As the months went by I actually started to look forward to my treatment knowing I would see these new friends and share in their love and support.

It might not always be easy to see the positive during difficult times but making new friends like these might change your mind!

Special thank you to Kate, Weyman, Heather, Mary Ellen and Carrie! XXXXXOOOOO

Gifts I Loved –Who Doesn’t Love Getting a Gift, Right?!

With Christmas right around the corner this seems like an appropriate topic! I appreciated ALL the thoughtful gifts & cards. I was given special pink bracelets, religious icons, fun themed baskets, beautiful fresh flowers, fruit baskets and restaurant gift cards. The flower arrangements gave me something beautiful to look at while I was at home recovering and at one point it even looked like a mini florist shop! The painkillers after surgery can really mess up your bodily functions (tmi) and nothing fixed that or tasted better than sweet delicious pears (you know who you are)! Another very useful gift were restaurant gift cards. It was so nice to be able to pick up dinner and order what we all enjoyed. It truly was a huge help! Thank you, thank you everyone for making me feel so special!

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No One Will Know

My first thought when I was diagnosed was, “I won’t let this change me!”  I was determined to not gain weight, keep working out and once finished live my life as I did before.  Well you know what?!? That is almost impossible! It’s nearly always on my mind but I do have moments where I actually forget all my body has been through! Today, only months after being finished with my treatments (having some hair definitely helps), people I meet have NO IDEA what I’ve been through! I’m excited to get back to my life again!!

Exactly one year from the end of chemo.

Exactly one year from the end of chemo.

Cybershopping- My new favorite hobby!!

Amazon became my new best friend! I have always been a fan of online shopping but I really took it to a new level with my cancer diagnosis.  You can order ANYTHING! I ordered headscarves, halo wigs, cleaning supplies, birthday gifts, snacks, candy, you name it, I could find it online! This helped me to keep up on some of my errands and feel like I was still contributing to help the family without being seen in public!  That’s why I really used Amazon Prime so much.  It was too much work to put something on my head constantly and I was embarrassed of how I looked.  It was just easier to stay inside all day (probably not the best decision).  I was also told the more I didn’t cover my head the better it was for my hair growth so it was really a win-win! ;)

Those Dreaded Drains

After both of my surgeries I came home with two drains (I was lucky, some have four or more) sticking out of my body! Besides having two long tubes and drain pouches attached to you, you also have to “milk” the drains and log the amount of fluid that is draining. They have to slow down considerably to be removed. This is only my experience of course, but the drains were one of the worst parts for me! I was extremely uncomfortable, I could not shower until they were out (TWO WEEKS THE FIRST TIME, THAT’S A LONG, DISGUSTING TIME WITHOUT A SHOWER) and one was pushing on a nerve making it difficult to breathe! Not fun! I was also so afraid of how much it would hurt when they were removed, but really that part was not bad at all, more disturbing than painful. I did take sponge baths and had my husband help me “kind of shower” during those two weeks but you will never appreciate a shower like the one after the drains are removed! I’ll never take a shower for granted again!!!

Depression...

Where do I begin? Having suffered from severe depression some years before my cancer diagnosis I didn’t think it was possible to feel more depressed than I already had in the past. I was wrong. It was different but it was a very sad and dark time for me.

There were many days during my treatment that I felt so sad I didn’t care if I lived another day. I remember driving recklessly a few times, I wanted to die and end my sadness not thinking or caring about anyone else. Remember, this is the depression talking, it’s not rational or caring. It’s hard to explain if you’ve never experienced it but for me it’s a hopeless feeling and an extreme sadness. It actually sounds crazy now, but when you are in it it’s difficult to get out.

There were days I cried many tears. There were days and sometimes weeks I would not cry but just stay in the house with the blinds shut so no one could see my bald head. When I lost my eyelashes and eyebrows, 5 weeks AFTER chemo ended, I hit my lowest point. I truly wanted to die. I was sure I would never recover from all the side effects so what’s the point of living.

I lost many things: my breasts, my hair, eyebrows and eyelashes, my nails were brittle, my body has scars from surgery and I was fighting constantly to not gain weight. (The side effects for majority of breast cancer patients is weight gain from chemo induced menopause, the steroids and hormone blockers). Besides losing all of these feminine qualities I felt I was losing my career as a commercial actress and was tired of watching everyone else live their life while I just sat on the couch watching my life pass me by.

I think you get the picture of how sad I felt.

 

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