It's YOUR Body and YOUR Decision!

I think it’s important to remember in the beginning stages, after you are diagnosed, you are meeting with numerous doctors and will be getting a number of opinions (both professional and not) as well. Once the news of your cancer diagnosis spreads, you will hear from Aunt Suzy Q and that friend from elementary school, who have their own ideas of what you should do! Now, while Aunt Suzy Q has good intentions, her bladder cancer is not the same as your breast cancer. Your best friends neighbor’s uncle who had leukemia as a child is not the same as your breast cancer either! You get the idea!

I was told to, “do the chemo, don’t do the chemo, juice the cancer away, imagine the cancer leaving your body,” etc. etc. Ultimately, you must step back from all of this friendly advice and make the best decision for the one and only YOU! I had a double mastectomy while others chose a lumpectomy. I chose to do chemo and avoid radiation, others only did radiation. We are all different and our diagnoses are all different based on our stage, our age, size of tumor, hormone receptors, just to name a few, all play a big part in our choices.

It’s your life and you have the power to say yes or no. Get a second or third opinion if necessary. Make your decisions based on what feels best and what gives you the best quality of life!

Stay well my friends!!

Why I Didn't Take Tamoxifen

I thought I should address this important topic since many women have asked me this question.

Once I was finished with my year of treatments, my oncologist suggested I take Tamoxifen, an anti-estrogen medication or hormone blocking medication, for 10 years! Tamoxifen is used to treat primary breast cancer. It is usually given as an additional treatment following surgery, to reduce the risk of breast cancer returning or spreading somewhere else in the body. This is known as adjuvant (additional) therapy and it has been shown to have many wonderful benefits and helpful in reducing the risk of recurrence.

A study from 2014 found, that the hormonal therapy tamoxifen offered long-lasting breast cancer risk reduction for high-risk women who hadn’t been diagnosed with the disease. (Breastcancer.org)

• tamoxifen reduced the risk of estrogen-receptor-positive breast cancer by 35%

• studies have shown tamoxifen reduced the risk of invasive and noninvasive breast cancer by almost half. (WebMD)

As with many drugs, a FEW of the common side effects are:

1. pain in the back, ribs, arms, or legs

2. rapid weight gain

3. tightness in the chest

4. trouble breathing with exertion or at rest

5. depression

6. difficulty moving

7. hair loss or thinning of hair

8. mood swings

9. joint pain

The list literally goes on and on!!! Let me highlight a few. RAPID WEIGHT GAIN, POSSIBLE DEPRESSION, DIFFICULTY BREATHING AND MOVING, JOINT PAIN!!! When my doctor mentioned to me about starting tamoxifen for 10 years, I still had one month of my infusions left of Herceptin. I started to cry and said, “I can not discuss this at this time.” I had things I needed to check off my list and I still wasn’t mentally prepared for another item! I had my mastectomy, reconstruction surgery, chemo, Herceptin, check, check, check and then thought I would be done. Emotionally and physically I could not handle another thing added to my list.

That is the first reason I did not take Tamoxifen. I was not mentally prepared. I just couldn’t take the risk of anything causing more depression. My second reason was because the other side effects also scared me. I spoke to many women who had gained at least 15 lbs and were feeling achy and tired everyday. Every one of them told me to not take it. Third, I found out it was on the American Cancer Society’s carcinogen list, (to be fair so are tobacco and processed meats etc.). But honestly, I avoid those things as well.

Lastly, I recently found out the scientists in the 1960’s synthisised the drug hoping it would block estrogen and act as an effective contraceptive. However, during testing, they found that tamoxifen stimulated, rather than suppressed, ovulation in women. This was originally seen as a failure and the development of tamoxifen was almost abandoned.  However, the team leader, Arthur Walpole, refused to stop there. He threatened his resignation if the project ceased. They decided to develop tamoxifen as a treatment for breast cancer, which has led to it now being the world’s best-selling hormone therapy for breast cancer. (The article can be found here 2.)

I’m sorry, call me crazy, but that all sounds fishy to me!!! I would never tell someone to not take tamoxifen. It’s a personal decision and it was mine to not take it. It’s your body and you have to do what feels best. I chose to take extra precaution by working out everyday which also reduces recurrence rates by 40-50%. (Article can be found here https://blog.dana-farber.org/insight/2018/02/can-exercise-reduce-risk-cancer-recurrence/)

I hope this helps explain a little more about why I chose to not take Tamoxifen and that the decision is YOURS!

WHAT DOES IT FEEL LIKE TO GET YOUR TISSUE EXPANDER FILLED?

I had someone ask me this question the other day so I thought I would address it here. Your mastectomy surgery will involve two surgeons, both a breast and plastic surgeon. First the breast surgeon removes all of your breast tissue and any lymph nodes. Then the plastic surgeon takes over and places expanders and a mesh to hold the implant in their place. I went home with a little air in my expanders but you will be very flat at this time.

A tissue expander is an implant that's more like a balloon. It stretches the skin to make room for the final implant. The expander has a port (a metal or plastic plug, valve) that allows the surgeon to add amounts of a salt water solution over time (between 2 to 6 months) until the skin gradually is stretched enough to fit the implant. I had to move quickly during this stage (because I needed to start chemo) so I had my expanders replaced after only two months. Others have had to wait for up to a year because they needed to finish radiation first. It all depends on your situation and your treatment plan to determine how long you will have the expanders in place.

Honestly, they are not very comfortable. Most women dislike the feel because they are hard and nothing like the actual implants. About two weeks after your mastectomy you will start getting the expanders slowly filled. Most women go every one or two weeks until you reach the desired size. You have to go slowly because you are stretching the skin and that can be very painful. Take it from me, go slow and take a couple of Tylenol or a pain killer that night if needed. After 24 hours I always felt so much better and I was ready for another fill the following week. When the doctor inserts the needle into the port he/she finds the opening by using a magnet type device. I felt NOTHING because you have no feeling in your breasts, so don’t be afraid of the needle! I could not feel the needle going in or out and I didn’t feel the liquid going in either. Overall, I found it a one of the easier parts of the process. I’m always here if you have any more questions!

SO YOU HAVE BEEN DIAGNOSED WITH BREAST CANCER, NOW WHAT?!?

It can be quite a shock to get any cancer diagnosis. Your doctors will want to act quickly, schedule many tests and numerous appointments with different doctors all within a two week period. It is overwhelming and difficult to comprehend what is even happening. I think it’s important to remember, YOU are still in control here. Yes, they are wanting to move as fast as possible because it is in your best interest to find out what kind of breast cancer you have, how big the tumor is, has it spread and what stage are you? However, once you have completed this whirlwind of appointments, you have the right to ask for a few days to really process and think it over. Make your decisions and ask others who have gone through this for their advice.

I remember my oncologist telling me I needed to start chemo right away. Well, that didn’t work for my life at the time, so I asked if I could start in one month. She was willing and accommodated my request. It was good to slow things down for just a few moments and then mentally prepare myself for what was to come. If you are unsure, get a second or third opinion. Hearing another doctor tell you the exact same thing as what your current doctor recommends is comforting. Asking other survivors, what they did is also reassuring. Take that time to do your research (not on goggle) and breathe!

What you are going through is life changing! You can’t rush these big decisions sometimes, but decisions must be made in a reasonable time frame. It’s really for your best interest and health. I’m here if I can help you or I have many many friends who have been there and can help as well! Together we can support each other and always remember, you are not alone!!!

Did I Cause My Cancer?

How can you not help but feel this way?! Immediately, my mind went to what did I do wrong? Did I do something to make this happen? I was dealing with some major stress factors prior to my diagnosis, so maybe my stress caused the cancer to flare up? I thought I was eating pretty healthy foods and working out consistently, but maybe I wasn’t doing the right things after all? Maybe I should have been eating vegan or paleo? Did my beauty products, like my makeup or deodorant, cause my cancer? Etc. etc…

I finally told myself to STOP thinking about the why and focus on the what now? What’s done is done. I can only go forward now and focus on getting through this the best way possible. Maybe there was nothing I could have done to prevent this?! Maybe this was going to happen if not at that moment, then maybe later in my life?

Don’t blame yourself and please don’t let anyone make you feel like you caused this or you did something wrong! Cancer is an abnormal growth of cells. Cancer is a disease caused by genetic changes leading to uncontrolled cell growth and tumor formation. About 1.9 million people will get cancer in 2020 and most had no control over it… and neither did you!

Losing My Hair Was So Difficult!

I remember when my oncologist said I needed chemo, the first question I asked was, “Will I lose my hair?” It may seem shallow to some. You would think I would be more concerned with “killing the cancer” or getting sick from the side effects, but no, I knew that would forever change my life.

You see, at the time my acting career was really gaining momentum. You have to stay active auditioning and taking acting classes to even be noticed in the acting world. I loved it and was enjoying “playing” and acting in different commercial roles. Instead I had to take an extended break from auditioning and face the year I had ahead. I had 12 weeks of chemo and made it half way through and then I woke up with clumps of hair on my pillow. Every time I showered it looked like a small mouse had appeared in the drain. It’s very disturbing and after a week I could take no more. I put on my brave face and asked my husband to shave my head. He did along with his own in support of the hell I was living. He looked much better than I did.

The real upsetting part is when you lose your eyelashes and eyebrows. Now I really looked like a cancer patient even though I felt pretty well. There was no hiding it. I tried to audition a few times with a wig, drawn in eyebrows and fake eyelashes. Let’s just say, auditioning without those things is difficult enough! Auditioning with those things was nearly impossible.. I was so worried I looked strange and if my wig had shifted I could barely focus on anything else.

Amazingly enough, it feels like ages ago, and I have so much hair again. I want to celebrate everyday! I never have “bad hair days” anymore. I have not been auditioning and who knows if I ever will again. You just never know what the future holds so I just take one day at a time now!

Stay well my friends!!!

XO,

A rare photo of me with no hair.

COVID-19 The All too Familiar Shelter In Place

To a cancer patient staying indoors for weeks, avoiding sick people, shopping online, avoiding large crowds is all too familiar. I know for my family this has been a difficult transition, for me it has been an easier adjustment because I did it for months at a time for over a year. Here’s a few tips that might help get you through.

1. Stay Connected. Reach out to your family and friends, send an email or text and even better give them a call!

2. Have a Routine. Get up at a similar time you would for work, get dressed, schedule something productive to do if you are not working from home.

3. Move! Go for a walk, do a home workout video (maybe try one of mine) be as active as possible. Now is a great time to get in extra long workouts and get in the best shape of your life!

4. Accomplish one thing each day. Cook dinner, write a card or letter, call someone, clean a closet or drawer, any task will do.

5. Be Grateful. List three things you are grateful for, talk about them at dinner, start a gratitude journal. Even in the darkest times you can find so many things to be thankful for!

I hope these can help you and remember I am always here if you need. Stay safe, happy and healthy!

XO

Me and my dog, Sammy. He was always by my side then and now!

Feeling All Alone

I remember right after being diagnosed thinking not only, “How could this happen to me?” but also, “Why am I the only one in my family this has happened to?”

For those of you who don’t know, my extended and immediate family has a predominance of females! My mom is one of five girls, I have three girls, I have one sister who has two girls and I also have two sister-in-laws and a mother-in-law. I have eight aunts and nine female cousins and they have had nine daughters between them. The point is the girls have always outnumbered the boys. YES!! Girls Rule! ;)

Besides that, I have way too many dear female friends to even count! And there I was, the ONLY one I knew who had breast cancer! (I found out one of my aunts had it but she was in her 70’s when it occurred, had a lumpectomy and radiation and is doing well).  So besides my aunt and couple others I met afterwards, there I was… alone.

Sadly, just three years after my initial diagnosis, I have helped many women from my community go through their own battle with breast cancer. I’m still the only other one in my family and I would like to keep it that way. In this case, being the only one is perfectly with me! If I can save my daughters, family and friends from going though this I will consider it a true blessing!

Wearing Headscarves to Cover Up My Bald Head

So… you are going to lose your hair due to chemo. It’s pretty much guaranteed if your doctor tells you this is going to happen then there is not really anything you can do to stop this from happening.  Sure, you might be one of the “lucky” ones who makes it 4 or 5 treatments in but eventually you will lose ALL your body hair! But, let’s not get off topic, today I’m talking about the hair on your head. If you can’t afford or don’t want to buy a wig or deal with wearing a wig, a good option is to wear a headscarf. They are very comfortable, come in many cute designs, are inexpensive and easy to wear, but still not the same as having your hair. As much as I tried to like wearing a headscarf, it still signaled to me, CANCER PATIENT AHEAD!! That was hard for me to get past because I was so healthy and I didn’t want anyone else thinking anything other than that. Hopefully, you can let your ego go easier than I did and embrace and enjoy wearing these cute head covers. 

Here I am at another doctor appt. trying to put on a happy face although I still had a long road ahead.

HAPPY HOLIDAYS AND A VERY HAPPY NEW YEAR!!!!

I just wanted to wish you all the best and a very happy and HEALTHY 2020! I’m 18 months out now from the end of my treatments and feeling great! I hope you are all doing well and please reach out to me if I can help you!!!

Here’s a couple of photos of the family having some fun! :)

XO,

Tammy

YOU CAN’T BE THERE FOR ME EVERY STEP OF THE WAY...

I wrote this when I was literally in the middle of it all. I was extremely depressed and couldn’t see the end in sight. Many people said, “they would be there for me every step of the way.” These were my thoughts at the time in response to that. I’ve never shared this before but I think it’s a good idea of how I felt in my darkest moments. Please forgive any grammatical errors.

I am the only one who can do this.

I am the one who will have to shave my head (and wait years for it to be close to the length it was before). Lose my eyebrows and eyelashes and maybe my fingernails too.

I am the only one who has to go to endless doctor visits, MRI’s, and echocardiograms.

I am the only one who will cry in the middle of the night because my body looks and feels so different.

I am the only one who is in excruciating pain after surgery or crying because the drains hanging from my body are causing me extreme discomfort and pain.

I am the only one who can’t move my arms for weeks, will have numbness in my underarm after a lymph node is removed and never have any feeling in my breasts again.

I am the one who won’t sleep because my mind is filled with fear and worry.

I am the only one…

Up all night because the steroids won’t let me sleep.

Who has to go to weeks of chemo and a year of treatments.

The one who is paralyzed on the sofa all day after chemo because nothing will soothe the nausea.

And the one whose reflection in the mirror repulses me.

Sometimes you can’t be there because geography won’t allow it, and you have your own lives, families and jobs. Your life will go on while mine will literally come to a stop!

Sometimes you can’t be there because you don’t know how to help me or what I need and …neither do I.

To Have Reconstruction Or Not?

There are many reconstruction options after having a double mastectomy. Usually, the plastic surgeon you are dealing with prefers to do one type or another. Some are very invasive and complicated and others not as much. I feel my type was the easier of the options. Many women stay flat and are perfectly fine with that, for me, that would have been more upsetting, so I chose to do what is called, delayed implant reconstruction.

I had expanders (an inflatable breast implant designed to stretch the skin and muscle) placed during my first surgery with a dermal matrix (alloderm) which essentially forms a “sling” that helps form a pocket and support the lower portion of the implant, holding it in position. The breast surgeon removed my breasts and then the plastic surgeon placed the expanders. The surgeons worked one after the other and surgery was about 6 hours long. I woke up with the expanders filled with some air but still very flat. After the dreaded drains were removed (two weeks for me) I went to my plastic surgeon about once a week to have the expanders slowly filled with saline. This has to be done slowly to stretch the skin (because it hurts like hell if it’s done too quickly) to fit an actual implant. Once the skin stretching was complete, I had another surgery to replace the tissue expanders with an implant. The implant placement is below & under the pectoral muscle which requires partial detachment of the muscle, which is usually limited to a specific part of the muscle.

At first my implants felt very heavy but with time I’ve adjusted and they now feel more like a part of my body. I’m happy I decided to do it and pleased with my overall results.

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

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!!

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!

Guest Podcast on DJ Breast Cancer with Tina Conrad

Here’s my episode! I was honored to be asked to share my story!

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

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!!!