My Support System

Mood: Grateful 🙂

Every cancer patient needs a good support system. I am very blessed to have many different moving parts to mine, and I feel that it is time to give them credit in not only helping me through my journey, but also being a constant in my life since I had the difficult task of telling them about my breast cancer.

God: I have cursed him, screamed at him asking “why?” but my faith has not wavered. I may not understand why I have breast cancer but I know that God has always protected me in my life and will continue to do so as long as I am alive.

Matt {my husband}: Sadly I have read many stories about cancer patients being abandoned by their spouse, boyfriend, partner, etc… I get it, caring for someone going through such a difficult journey is not easy. You need to not only be strong for your loved one, but also for yourself. This is a long journey that lasts for well over a year with constant ups and downs, doctors appointments, surgeries and treatments and my husband has been by my side for all of it….I am so blessed to have him in my life! I will never be able to thank him enough for everything he has done for me during this terrible time. I love you so much sweetie!

My Dad & Brother: I do not have any family where my husband and I live. My Dad is in the Midwest where I grew up and my brother lives in Japan. Even though I do not have either of them near me, we talk often either on the phone, via email or messenger. I keep them updated on what is going on with me both good and bad. I know they wish they could do more for me but honestly just listening to me when I need them is beyond valuable to me. I love you both so much!

My Friends: I can’t possibly mention everyone so I will just discuss how various friends have been there for me since telling them about my diagnosis. I sent private messages to my closest friends on messenger to tell them the news. It was hard telling them, but it was the right thing for me to do. I didn’t want them finding out via Facebook once I was brave enough to post about what was happening, I love and respect my friends too much to have them find out that way. Almost all of them started asking me questions and checking on me here and there which I really appreciated. You never know how people will react when you tell them such terrible news but I have received nothing but love and support. Once I posted the news on Facebook I discovered that some of the women I know either online or in real life are either fighting breast cancer currently, just got diagnosed or have been through it in the past. It has been so helpful to me to talk with other women that understand what I am going through and so rewarding for me to have other patients thank me for being so open and honest in this blog. For me to make a difference in someone’s life is a blessing that I never expected, so thank you Linda for suggesting that I write this blog.

My Doctors: I am active on a few different apps for cancer patients and it is a double edged sword at times. One of the sad things I have noticed is the poor care that some patients receive from their doctors. Reading about doctors yelling at cancer patients, surgeons leaving large horrible scars on a woman’s chest and leaving patients with more questions than answers is horrible and terrifying. After reading of such horrors and seeing pictures as evidence, I have no doubt in my mind that I have been blessed with the best doctors to care for me and help me through my journey. I have three doctors, an amazing surgeon who is also a breast specialist so he has done all of my surgeries and has been with me from the beginning, an oncologist and a radiation oncologist. My surgeon reffered me to my oncologist, who reffered me to my radiation oncologist. My doctors work very closely together and I absolutely trust them to do what is best for me as we fight breast cancer together….they are my team and they fighting right along side of me! I will never be able to thank them enough for everything they have done for me and are continuing to do as my journey is not over yet.

My Hospital: All of my doctors are near or on the Gwinnett Medical Center campus. There is one building in particular where I have spent most of my time in from the beginning of this journey. In that building I have my surgeon, the surgery center where I had reconstructive surgery, my oncologist, the room where I had 16 chemotherapy treatments, the breast center where my wires were placed for my cancer surgery, the cancer support center and there is a rep for the American Cancer Society located there as well. The cancer support center in particular has been so helpful. I was assigned a breast nurse navigator who has been with me from my first appointment with my surgeon to present day. I told her how terrified I was of my first surgery as I had never had one before. I was shocked when she showed up at the hospital the morning of my surgery to bring me a bag of goodies and sit with me for awhile. I was crying alone in a waiting room when she showed up, I was so scared. My husband was not allowed to come back and see me yet so being alone and being terrified was just too much for me….thank God she showed up when she did. So now it is 10 months later and she stills calls to check on me and see if I need any help with anything, if I need to contact any of the many resources her office offers or just need to talk….I am so grateful for her! It is a shame that more hospitals do not offer such an excellent resource!

I have many people to be so thankful for, and I truly believe that it has made all of the difference in my journey! Love you all! 💕

Reality of Chemotherapy

Mood: Sad 😫

I know I have written about the side effects I experienced while going through chemotherapy treatments and the after effects, so I won’t go into the details about all of that again. You can read that entry here if you haven’t read it.

This is a hard entry for me to write, to show you a part of me that breast cancer and chemotherapy have taken from me. Anyone that knows me well, knows that I take pride in my appearance. I knew from the beginning that I would lose my hair, so I bought a few wigs early on in my journey and I promised myself that I would not go to a doctor’s appointment or out in public without a wig and at least some makeup on. I didn’t want people seeing me and feeling sorry for me, and I still don’t.

I have an update about my two big toe nails….I had to cut them both almost completely off and quite honestly, I cried…this newest development is devastating to me!

My sad toes, with medication applied!

This is yet one more part of me that I have lost to breast cancer and chemotherapy. First it was my beautiful long blonde hair, then my eyebrows and eyelashes, then the rest of the hair on my body, yes, all of it, then it damaged my finger nails and now, losing my toenails. Luckily, it looks like my nail beds were growing under my damaged toenails, my toenails had almost completely lifted away from my nail beds, so my toenails should grow back healthy and normal, but it will take time. My hair, eyebrows and eyelashes are growing back now, but slowly. I will eventually take a picture of what my hair looks like now and update you. Currently I am waiting for it to fill in a bit better as I have a big patch in the front that is not growing at the same rate as the rest of my hair and I have noticed that my eyebrow on the same side is behind in its growth as well…no clue as to why.

So at a time when I have already been feeling ugly and less than feminine, losing my toenails and worrying about what they will look like by my trip in May, has not been helpful. I know that the way I am feeling about how I look will eventually pass as my body continues to fight to get me back to good health.

Radiation Oncologist Appointment

Mood: Frustrated 😕

Last Monday I saw my Radiation Oncologist after my treatment. From now moving forward, I will see her every Monday so she can see how I am doing with my treatments. It will also give me the chance to chat with her and tell her about any concerns I have.

For the first time, she saw my tattoos for my treatment, there are 3 of them strategically placed so they can line me up on the machine for treatment, and she apologized to me for them being so large. They shouldn’t be any larger than this…but mine are 3 times that size. Now I will have to deal with finding someone to remove them. I am hoping that I can have the removal done and healed before our trip in mid-May {my husband & I are renewing our vows in Jamaica, a trip we had to reschedule for next year due to my breast cancer diagnosis. 😕} Worse comes to worse I will cover the most noticeable one on my breast during our ceremony and when we are at dinner each night.

My conversation with her about my tattoos really saddened me, as the thought of needing to find yet another doctor to put me through even more treatments is overwhelming at this point. When I see her tomorrow I will ask her how long I will have to wait to have the tattoos removed once I am done with my radiation treatments. I will want to move quickly if I can have them removed soon after my treatments end.

Tomorrow is treatment #7 out of 25….I am getting there. My treatments will go much quicker once I am past New Year’s as I will be going every Monday through Friday, no more holidays to work around.

“What I Wish People Would Stop Telling Me About Breast Cancer”

I found this article earlier today and some of it rings true in my case but some of it doesn’t. Either way, I know that people mean well and that this is a very uncomfortable subject normally, let alone when someone you know and love is going through this terrible journey. I have people that I wish I would hear from, but have not, and while it is painful for them to stay silent, I understand and I forgive them…..I just hope that they do not have regrets later. I don’t want any of my family or friends taking this article personally either….trust me, if you have said something that upset me, I let you know immediately, so if you don’t remember having that kind of conversation with me, don’t worry about it. 💕

What I Wish People Would Stop Telling Me About Breast Cancer

Written by Ann Silberman on March 22, 2017

I’ll never forget the first few confusing weeks after my breast cancer diagnosis. I had a new medical language to learn and many decisions that I felt wholly unqualified to make. My days were filled with medical appointments, and my nights with mind-numbing reading, hoping to understand what was happening to me. It was a terrifying time, and I never needed my friends and family more.

Yet many of the things they said, although kindly meant, often didn’t lead to comfort. Here are things I wish people didn’t say:

I wish people would stop using clichés:

“You are so brave/a warrior/a survivor.”
“You’ll beat this.”
“I couldn’t do it.”
And the most infamous of them all, “Stay positive.”

If you see us as brave, it’s because you haven’t been there when we had a breakdown in the shower. We don’t feel heroic simply because we show up for our doctor’s appointments. We also know you could do it, as nobody is given a choice.

The cheery phrases meant to elevate our emotional state are the hardest to take. My cancer is stage 4, which so far is incurable. The odds are good that I won’t be “fine” forever. When you say, “You’ll beat this” or “Stay positive,” it sounds dismissive, like you’re ignoring what is actually happening. We patients hear, “This person doesn’t understand.”

We shouldn’t be admonished to stay positive when facing cancer and perhaps death. And we should be allowed to cry, even if it makes you uncomfortable. Don’t forget: There are hundreds of thousands of wonderful women with the most positive of attitudes now in their graves. We need to hear an acknowledgment of the enormity of what we are facing, not platitudes.

I wish people would stop telling me about their relatives who died:

We share our bad news with somebody, and instantly that person mentions their family cancer experience. “Oh, my great-uncle had cancer. He died.”

Sharing life experiences with each other is what humans do to relate, but as cancer patients, we may not be ready to hear about the failures that await us. If you feel you must share a cancer story, make sure that it’s one that ends well. We’re fully aware that death may be at the end of this road, but that doesn’t mean you should be the one to tell us. That’s what our doctors are for. Which brings me to …

I wish people would stop pushing quack treatments on me:

“Don’t you know that sugar feeds cancer?”
“Have you tried apricot kernels mixed with turmeric yet?”
“Baking soda is a cancer cure that Big Pharma is hiding!”
“Why are you putting that poisonous chemo in your body? You should go natural!”

I have a highly trained oncologist guiding me. I’ve read college biology textbooks and countless journal articles. I understand how my cancer works, the history of this disease, and how complicated it is. I know that nothing simplistic will solve this problem, and I don’t believe in conspiracy theories. Some things are completely out of our control, which is a frightening idea to many, and the motivation behind some of these theories.

When the time comes that a friend gets cancer and refuses medical treatment in order to encase their body in plastic wrap to sweat the disease out, I won’t offer up my opinions. Instead, I’ll wish them well. At the same time, I would appreciate the same courtesy. It’s a simple matter of respect and trust.

I wish people would stop discussing my appearance:

“You are so lucky — you get a free boob job!”
“Your head is a beautiful shape.”
“You don’t look like you have cancer.”
“Why do you have hair?”

I’ve never had as many compliments on my appearance as I did when I was diagnosed. It’s really made me wonder what people imagine cancer patients look like. Basically, we look like people. Sometimes bald people, sometimes not. Baldness is temporary and anyway, whether our head is shaped like a peanut, a dome, or the moon, we have bigger things to think about.

When you comment on the shape of our head, or seem surprised that we still look the same, we feel like an outlier, different than the rest of humanity. Ahem: We also don’t get perky new breasts. It’s called reconstruction because they are trying to put something back together that has been damaged or removed. It will never look or feel natural.

As a side note? The word “lucky” and “cancer” should never be paired together. Ever. In any sense.

What I wish you WOULD do:

Of course, we cancer patients all know that you meant well, even if what you said was awkward. But it would be more helpful to know what to say, wouldn’t it?

There is one universal phrase that works for all situations, and all people, and that is: “I’m really sorry this has happened to you.” You don’t need much more than that.

If you want to, you can add, “Would you like to talk about it?” And then … just listen

A Year Ago Today

Mood: Thoughtful 😔

A few pictures from a year ago today….I smile as I look at them because the Christmas party was so much fun, but I am also sad. Little did I know that I was already sick, that I most likely already had breast cancer and that I would find the first tumor in my breast during a self exam about a month later.

I was incredibly tired and hadn’t been feeling like myself at all. My husband and I went home to see my Dad for Christmas for a few days and I was absolutely exhausted by the time we got back home. One night after New Year’s, I was trying to explain how I was feeling to my husband, and it was so hard to describe. I eventually broke down and said “I think I am really sick but I don’t know what’s wrong, I am scared!” A few weeks later I found the first tumor…..

I am still doing self exams even while fighting breast cancer. My breast cancer is very aggressive so my Radiation Oncologist suggests that I continue to do self exams even while in treatment. I am doing self exams about once a week currently because I am paranoid, and with all that I have been through I have a right to be. I am of course also terrified that the cancer will come back but I don’t let those thoughts rule my life, I can’t.

I can’t stress enough to please, please make sure you do a self exam every month and that you have a mammogram every year… could save your life!

My First Few Radiation Treatments

Mood: Nervous 😞

My first radiation treatment was on the December 19th and it went well. My actual time on the table was about 15 minutes as they have a large area to treat. I don’t feel anything during the treatment and much like during an MRI, I have to lay completely still. I don’t have full mobility in my left arm so they made a mold that they place under my arm to help me get into the proper position for my treatment.

My second radiation treatment was yesterday, December 20th and I am still doing well. I am getting used to the routine when I go to my appointments and I was told that I will meet with my doctor every Monday. I won’t blog every time I go as I have 25 treatments over 5 weeks. They told me to expect some redness and for the fatigue to return about halfway through the treatments. 23 to go….ugh

What is the success rate of radiation treatments? It appears that external-beam radiation therapy is a superior treatment in some cases. When patients are treated with modern external-beam radiation therapy, the overall cure rate was 93.3% with a metastasis-free survival rate at 5 years of 96.9%.

Radiation therapy uses targeted energy (e.g., X-rays, radioactive substances) to destroy cancer cells, shrink tumors, and/or alleviate certain cancer-related symptoms. It may be used:

  • As a primary treatment to destroy cancer cells
  • In combination with other treatments to stop the growth of cancer cells
  • Before another treatment to shrink a tumor
  • After another treatment to stop the growth of any remaining cancer cells
  • To relieve symptoms of advanced cancer