One year ago yesterday, my doctor called me at work to let me know that I had breast cancer. That was a weird day. What do you call that? Breastiversary? Survivalversary? Cancerversary?
To celebrate my Breastiversary (one day late), I have attached these bright, happy photos for your enjoyment:
I’ve started something new and I’m really excited about it! Check this out – Jennifer Engledow Photography.
If you couldn’t tell, I’ve discovered something about myself. I LOVE taking pictures. I love everything about photography ~ taking the pictures, looking at the pictures, editing the pictures and showing others my pictures.
With this new enterprise, I’ve been really busy and haven’t had time for writing, Okay, that’s not quite honest.
If I were being honest, I would say that writing has become very challenging for me and I’ve lost the drive to put my thoughts down into words. I think about it a lot and wonder why. Does it have something to do with my breast cancer diagnosis? I think I did suffer from depression at the end of 2013. Was that it? Is it the Tamoxifen doing a number on my brain? Who knows.
I do know that I want to get back to it on a regular basis so consider today my first day back.
And, here is a photo for you to enjoy as well:
Radiation Fibrosis. What the hell is that? I actually just learned myself. In February, I had started noticing that my left side ached and my left arm had lost a lot of mobility.
Definition: Fibrosis is the formation of scar tissue. Fibrosis can occur as a result of radiation treatments. While radiation is being given, it affects cancer cells and healthy tissue that is nearby. In healthy tissue, small blood vessels in the area may be damaged or sealed off. When this happens, the affected tissue no longer gets enough nourishment. Radiated healthy tissue may then “fibrose” or scar. That scar tissue will feel firm or may feel like a mass or even like a recurrence of cancer. Fibrosis may also occur naturally in breast tissue that has fibrocystic changes.
In a serendipitous moment in early February, a lovely woman at work who also happens to be a breast cancer survivor asked me if I had started my physical therapy yet for my arm. Physical therapy? She had experienced the same discomfort and loss of mobility and swore by the physical therapy.
So, after contacting my breast surgeon at the urging of my coworker, I was put in contact with a physical therapist that specialized in post-radiation trauma and lymphedema. Man, I’m glad I made that call.
But, as helpful as these sessions have been, they have been a bit uncomfortable.. Let me back up a bit. Last summer, I got used to every Tom, Dick and Mary marking on, taking pictures of, feeling, smashing and viewing my jubblies. Since then, my modesty has returned intact. Returned just in time for new weirdness to begin.
Why are the sessions weird? Essentially, twice a week I’ve been receiving a breast massage. What’s not to like about a breast massage, right? Um, it’s not sensual. Have you ever had a deep tissue massage? Twice a week I get a deep tissue massage on my boob, armpit and side. It hurts like hell.
Ladies, I know you know how uncomfortable a pap smear is. That awkward chat with your OBGYN doctor about your weekend plans trying to ignore the fact that she’s examining your hooha? What if that moment lasted three times as long?
With my physical therapy sessions, the massage part lasts about twenty to twenty-five minutes. That’s A LOT of awkward conversation to be had. Sometimes I run out of things to say. For those that know me well, that may come as a shock. However, for me, the silence is worse than the rambling chatter so I ramble. On and on and on.
My poor therapist. She sure is a good listener. Do I owe her a parting gift? I mean, I’ve been seeing her intimately for two months now. Is there protocol for our eventual good-bye?
Aside from the awkwardness, the treatments have helped me tremendously and I’m so glad my coworker repeatedly urged me to make that call. My husband said “What if you hadn’t called your breast surgeon?” I don’t want to think about it – it’s made that much of a difference.
My new normal is a pill box (I didn’t think that would happen for another twenty years), daily stretches and strengthening exercises, doctor appointments with my medical oncologist every six weeks, mammograms every six months and appointments once year with my radiation oncologist. I’m working on accepting my new normal because, as it was brought to my attention the other day, it’s better than the alternative.
I do look forward to the day when breast cancer isn’t always on my mind.
Eventually, that day will get here.
My brain is stuck. That’s why I haven’t been writing. My brain is swirling with ideas, but it can’t seem to land on anything. Writing has become h-a-r-d. I think I spelled that correctly.
I had to sound it out. (That’s normal, right?).
If you have been a follower of this blog, you know that I was diagnosed with breast cancer last summer. June 24th to be exact (the day after my birthday). Last year was a helluva year to say the least.
My course of treatment was a lumpectomy and seven weeks of daily radiation. Woohoo. I was also lucky enough to find out that my cancer was hormone positive. I’m kind of being serious here. Hormone positive breast cancers are easier to treat than hormone negative breast cancers. Why is this important?
With hormone positive breast cancer, Tamoxifen is the recommended course of treatment – one pill everyday for five years. Unfortunately, there are serious side effects to be considered. I was given the prescription in early December and had it for thirty days before I made my decision. After visiting multiple chat rooms, viewing multiple web sites, and discussing it with friends, I decided to try it. A fellow breast cancer survivor said to me, “Jenni, why wouldn’t you want to try anything to prevent getting breast cancer again?” I couldn’t argue with that.
There are a TON of side effects with this drug. The couple that seem to be plaguing me the most are chemo brain and hot flashes.
The hot flashes were to be expected. Not to be too TMI-ish, but I had a total hysterectomy (with ovary removal) after my radiation treatment and that surgery puts a women into surgical menopause, like immediately. This drug seems to make them a bit more intense. Menopause, Schmenopause.
What in the holy hell is the evolutionary reason for hot flashes? I mean, really?! Was it to signal eligible bachelors that you weren’t available for procreation, but were available for recreation? There had to be a better way. Just sayin’.
The “chemo brain” is a whole other story. I started taking Tamoxifen in January and after two weeks, I noticed a SERIOUS decrease in my brain function. My kids and my hubs can back me up on this. My brain WAS a steel trap. I NEVER forgot anything. ANYTHING. That was my most annoying/endearing trait (probs mostly endearing).
Not anymore.
Since I’ve been on this drug, I feel like I’m in a fog. I want to talk, but can’t think of words. They’re there floating in front of me, but I can’t reach them. In mid-sentence, I forget what I’m saying and can’t finish a thought. I want to comment on the stories of the day, but they become vague wisps of memories even though I just read them that day. I used to be analytical (I was a math major), and now I struggle with parsing an article.
I’ve become someone I’m unfamiliar with:
In addition to my addled brain, I also have been diagnosed with radiation fibrosis.
Yesterday a friend checked in with me to see how I was doing. After I explained what was happening, she aptly reminded me that even though my new normal was frustrating, it was better than the alternative. That is absolutely hard to argue with.
Wait. What? Radiation fibrosis, you say? Check out my next post.
On my last day of radiation treatment, I said good-bye to Thor, my trusty companion for seven weeks. The big lug! I can’t say that I’ll miss him, but I know he did give me everything he could give in this relationship. His treatment will reduce the likelihood of the breast cancer returning in Ole Leftie by sixty percent so I do appreciate it even though it was uncomfortable as hell both physically and mentally, left my skin permanently scarred and drained every ounce of energy from me.
It has been three weeks since my last treatment. My radiation oncologist said that the fatigue could continue for up to two months and that my skin would be back to normal in two weeks. He’s a nice guy, but also a LIAR. Okay, kind of a liar. My skin is better, but not back to normal (hence, the liar comment). However, he speaks the truth about the fatigue.
My ordeal is not quite over. I’m having surgery in October (girlie stuff). Needless to say, I will be grateful to put 2013 behind me.
It’s been strange being on this end of a serious illness. Strange and Educational.
Strange because I’m the healthy one. I don’t get sick. I don’t have ongoing health issues. That’s for other people, not me.
Okay, maybe I was the sick one this time (I’m actually still trying to come to grips with this statement).
Thank goodness for my close friends and family because I did need help and they forced it on me.
Friends: Why don’t we set up a meal train?
Me: Oh, okay. Let’s do it. I don’t think I’ll need it, but why not?
Dad: I have all of your appointments on my calendar. I’ll drive you every day.
Me: Oh, okay. That’ll be great.
I agreed because when you are going through something serious (no matter what it is), the people in your life want to do something. I really didn’t think I would need the meals and felt a little guilty about it. But, I will tell you that they were truly a gift. I honestly did not have the energy to meal plan and grocery shop. Those lovingly prepared meals allowed me to erase the images from my mind of my family dumpster-diving for food.
Also, even though I could drive, I let others (mostly my dad) drive me to my appointments. Making that trek by myself every stinkin’ morning for seven weeks would have been terrible. Thanks, dad!
When you’re having radiation treatment for breast cancer, it’s not obvious to others that you are ill or dealing with something serious. They can’t see the pain you’re experiencing (both external and internal) and they can’t see the fatigue. You’re not losing your hair, experiencing extreme nausea, or looking ill, but you’re still feeling badly (physically and emotionally) and you still need help. Let those in your life that want to be there for you help you. It’s a gift for both of you.
Educational because I learned what not to say to someone that’s received a breast cancer diagnosis:
Thank you to all of you that were thinking of me, driving me to my appointments, sending me notes and emails of encouragement, making me meals, calling me and just being there. I had no idea how many people cared. I know that sounds blubber and rubbish, but I mean it. It has not gone unnoticed and has truly given me strength through this rough time in my life.
Our bathroom drama is over. These are pictures of my new bathroom shower and I’m really happy with it!
However, you should stay tuned because we will be doing the kids’ bathroom near the end of the month and that should generate some more drama. Our house projects never go smoothly. Ever.
For other positive news, I only have four radiation treatments left! My last treatment is Friday, September 6th. This goes without saying so, of course, I’m going to say it anyway – I can’t wait for this to be over!
It has been a surreal time in my life. It’s strange getting up every morning and starting your day with radiation therapy. I think about three hundred strangers have seen, touched, stickered and/or sharpied my left breast. Okay, maybe not three hundred, but at least fifty. And, it’s just weird. That’s all. Why so many? Beginning in August, there was a new student observer in the room each day with the techs as they lined me up for Thor. The techs would ask, “This is Jane or John, a new student. Is it okay if they observe your treatment?”
Sure. Why not? I don’t want anyone to feel left out.
But, I will say that everyone at the Cancer Center has been wonderful – I cannot complain about my care.
The side effects are really settling in – the fatigue is crazy! Also, my breast and armpit are soooo burned. And, I have scar tissue in my left armpit from my breast surgery. How does that happen? How did the scar tissue migrate from my breast to my armpit? Ah, the wonders of the human body.
This scar tissue is causing pain when I use my arm which wouldn’t be so bad if I didn’t have to use it. But, when you have a working arm, it’s hard not to use it. So, I may I need physical therapy. What will a physical therapist do to my armpit? Does anyone know?
So, what are you in PT for? Oh, recovering from knee surgery? Cool. What am I in here for? Me? Well, scar tissue in my armpit. Yep.
I started having sharp pains in my right breast a couple of weeks ago, but they have since subsided. I think my right breast was having sympathy pains (and, she may be a little jealous of the attention-stealing left breast). But, no worries. She’s just a drama queen.
Let’s pour a glass of wine and say a toast.
Here’s to the end! [sip]
Cheers! [gulp]
For the last two weeks, I have started each day with an unusual regimen: radiation therapy with Thor the Healer. Thor the Healer is the name of the radiation machine that greets me every morning. I love the name.
Thor was having problems last week and my therapies on Thursday and Friday were all jumbled up, but I eventually got treated. I know how he feels. Sometimes you just don’t want to do what you’re supposed to do.
Before I started radiation, I read my Radiation Therapy and You booklet and I’ve also been on the internet visiting various breast cancer chat rooms. I was warned, “Don’t go on the internet!” Yeah, like that was going to happen.
Here are some of the side effects:
Fatigue – Check!
Redness – the treatment area could look like you have a sunburn or a tan. Check! I have a light burn.
Pruritus (is this really a word?) – the skin in the treatment area could itch so badly that you could scratch it until it gets infected. Thankfully, this has not happened.
Dry and Peeling Skin – the skin can get so dry that it peels. This has not happened because the radiation oncologist told me to buy a $14 bottle of lotion. It seems to be working.
Moist Reaction (I hate the word ‘moist’, don’t you?) – apparently radiation kills skin cells which can cause the skin to peel off faster than it can grow back. This can result in sores or ulcers. Hopefully my super duper expensive lotion will prevent this from happening.
Swollen Skin – the skin in my treatment area may get swollen and puffy. This is kind of hard to tell with boobs since they are both swollen and puffy by design, so I can’t give you an accurate assessment at this time. Maybe later in my treatment.
Hair Loss – radiation can cause hair loss only in the radiated area. I was told that I might lose the hair under my left arm. Put a check mark in the pro column!
Side effects not listed in the book:
Pain Bursts – radiation can cause shooting pains to explode in your breast like a punch to gut. This pain burst will last only a few minutes, but can cause you to double over, grab your breast, and cry out in agony. These pains were intense during the first week of radiation, but have slowly subsided. I think this is because Thor is slowly killing all of my breast tissue. Oh, and I read a post in one of the chat rooms that said this could be a permanent side effect. Wonderful. It has a name, but I quickly forgot it because I don’t want it to be so (that works, right?).
Nipple Fry – it feels like you have an extremely sunburned nipple. Don’t know what that feels like? I didn’t either until I started treatment. I know you’re thinking, “Duh. Didn’t she read second item in the first list?” I did, but I didn’t connect the dots that since my skin would look sunburned, that it would actually feel sunburned. And, it didn’t occur to me that my nipple was part of my skin. It’s very, very uncomfortable. It would feel better if I didn’t have to wear clothes. But, alas, social convention requires me to wear clothes. My radiation oncologist offered a special numbing cream. I told him that I would think about it.
As of today, I’ve had twelve treatments. Only twenty-one treatments to go! Usually, the days fly by quickly for me, but now the days are drifting by s-l-o-w-l-y. But, there is light at the end of the tunnel.
Radiation. My first appointment was yesterday and it was overwhelming to say the least. It was my “practice” appointment where I was on the table and the machine ran through all of the angles without actually emitting any radiation. And, I received new markings on my torso – these are larger and more intricate than the previous ones. Yay.
One bright point: One of the radiation specialists said I was the easiest appointment of the day. You’re welcome. I always strive to do my best.
Radiation therapy is strange. Today was my first “real” appointment. I donned my pink “open in the front” gown to signal to everyone that I was ready for some radiation. I was placed on the table in my custom-fitted pillow and then the machine moved around a bit (lasted about 5 minutes) and then I was done. I felt absolutely nothing. The machine did hum a bit and that was it. Did I really receive a radiation treatment?
The VERY nice radiation techs assured me that I did indeed receive my first treatment. Okay, if you say so.
There are many guidelines to follow when having radiation. Let me sum it up for you.
Once I read my Radiation Therapy and You book, I will share with you the possible side effects of radiation. You’ll have to check out my next post to find out what they are. I know you will be holding your breath. I am.
Cancer sucks. I suppose I’m stating the obvious. But, I thought I would go ahead say it again anyway just in case you didn’t know.
Did you know that there are A LOT of tests involved when one receives a cancer diagnosis? So, so many. This past Monday was test day for me.
Test One: Breast MRI / 9:15AM
If you’ve never experienced an MRI, I will tell you a secret. They are LOUD. I mean really loud. On a conceptual level, I knew that. But holy cow. I went to a special center that was called Breast MRI North – very descriptive really. From beginning to end, the entire process lasted about forty-five minutes with the MRI portion taking about twenty or twenty-five minutes. My friend that accompanied me said that she could hear the machine from the waiting room.
Tips for a Breast MRI:
Just repeat after me: “They are now just another set of appendages that anyone and everyone can see, touch, tug, pull, pinch and smash.” I know it’s hard to get used to, but you need to suck it up, Buttercup!
Many of you will be able to relate to this story. All of my breast-related experiences since May have taken me back to when I gave birth for the first time. I had a really long labor with Rachel (15 hours) which meant that multiple shifts of nurses visited me to check on my dilation status. In the dark hours of morning when the hospital was sleeping and quiet, I thought I saw even the night janitor enter my room at one point to check on the ole’ vajayjay. Maybe there was a sign posted outside my door or someone was selling “peeks”. I just don’t know. I was in too much pain to really care.
After the brief misgivings I had at making a hasty music selection, I got over it and thought, “Cool, I’ll get to listen to some music so I won’t have to hear this awful machine.” Uh. Wrong. As I lay tummy-down on the MRI table with my boobs dangling through two convenient holes, one of the nurses placed the headphones over my ears in a womperjawed fashion. Since my arms wouldn’t bend that way, I couldn’t fix them. Great. Why couldn’t I put the headphones on myself? Medical malpractice?
Being in an MRI machine is like being in a running dryer along with all of your shoes while the “done” buzzer is going off, and then like being inside a radiation siren while it’s sounding off during a nuclear meltdown. These sounds alternate with bits of quiet in between. The headphones I had on did absolutely nothing other than spew loud music into my ears while trapped inside the noisemaker.
Update on my MRI results: All clear! I have no other cancers hiding in either of the girls. Needless to say, I’m extremely relieved.
Test Two: CT Scan / 10:30AM
The CT scan is critical to my radiation treatment. My radiation oncologist will use these images to calculate the angles of radiation so this scan needs to be accurate. In calculating the radiation angles, they will try to minimize the impact on my heart and left lung – I’m all for that. There are possible risks to the heart and lung associated with radiation that can show up years later.
Tips for a CT Scan:
For the remaining part of this test, remember that your ta-tas are now just like your arms or toes. Your bosom is no longer private.
It was a very weird feeling to have your breast exposed the entire time during the scan and to have two people draw on your breast and torso afterward. It was even weirder when the nurse with the marker asked if it was okay if he could take a digital photo of his handy work. Does the photo go into a scrapbook? Will a picture be circulated on Facebook, Twitter and Instagram? I don’t think it was my best work.
That was Test Monday for me. It was crazy and I was very grateful that my dear friend went with me because I just really needed the moral support and someone to discuss it with.
I did get the “radiation” call late this past Friday. I will be starting my radiation treatments tomorrow (Monday). The first appointment will be the longest as they will check my marks (and, they are all still there!) and perform a dry run of the actual radiation treatment so they can review their flight plan. If it all looks good, I will have my first actual radiation treatment on Tuesday.
More to come. . . .
Where do I begin? Unexpected, devastating, shocking . . .these are some of the words that come to mind when describing the betrayal.
It could be a lot worse.
At least you found out about it early. You’re lucky.
I know someone who had the exact same experience and she is fine.
I know everyone means well and I really do appreciate it. But, sometimes I need someone to say that it’s okay to feel the way I’m feeling and it’s okay if I don’t feel lucky I found it out early and I know that others have experienced this same betrayal and I am truly sorry about that but I don’t want to hear about these stories just yet.
I need some time. I know that I do eventually have to come to grips with it and move on. And, I know this and I will do it. I just need more time to process the pain and disbelief.
What happened? I found out this past Monday that I have breast cancer in my left breast.
This happens to about 288,000 women and 2,200 men a year. Of the 288,000 women, roughly 58,000 receive the diagnosis that I received. I have DCIS which is the earliest form of cancer so I know that’s why everyone is telling me I’m lucky. Lucky is not the word I’m choosing to use to describe how I feel at this moment. Don’t worry. I’ll get there.
I’ve had to go through some rather uncomfortable and humiliating diagnostic procedures to get to this point too. Why hasn’t someone come up with a better way other than smashing your boobs in a vice and then having someone ask you if you are okay?
Um, no. I’m not okay because someone has my boob in a vice and telling me to hold my breath.
Since this is the first time that I’ve had to proceed further than the standard mammogram, there is no way I could have anticipated what awaited me in the diagnostic testing department (aka torture). Have any of you had a stereotactic breast biopsy? I wouldn’t recommend it. It’s a mammogram on steroids which includes needles, vacuum-sucking sounds and also nurses asking if you’re doing all right.
Yep, I’m doing just peachy keen here with my boob dangling through a hole in the table that I’m lying on face down while a nurse hiding under the table pulls and twists my boob juuusst so before smashing it in a vice. And then with that awesome vacuum-sucking sound in the background, the radiologist is shooting me with a device that removes samples of my breast tissue. Peachy.Keen.
Did I tell you that they don’t even give you a happy pill or a shot of vodka before this procedure? What is up with that? I know people who get laughing gas just to get their teeth cleaned! It’s a conspiracy against women. It’s the only conclusion that can be drawn.
This unfortunate diagnostic torture led me to an invasive breast biopsy. I am happy to report I was completely knocked out cold for the actual biopsy, but I had to undergo another barbaric procedure the morning of my biopsy. Again, unbelievable. I had to have a wire localization procedure which helps the breast surgeon remove the correct area (I’m all for that). However, again, no happy pill or shot of vodka. Just a boob smash, a “How are you doin’?” and then a needle in the boob leaving some wire behind.
Yep, yep, yep. I’m doing great here while you are sticking a wire into my boob as it’s being smashed as flat as a pancake.
What’s next in my future? Well, seven weeks of radiation and possibly another surgery to have my ovaries removed. I’m not using them anyway. Their removal will put me into early menopause, but let’s be candid here. I’m facing menopause within 5-6 years any way. Hot flashes, here I come!
One of the hardest parts about receiving a diagnosis like this is sharing it with your children. We talk about everything with our kids and have been extremely honest with them. We aren’t whispering the words, breast cancer. We are saying its name aloud and facing it.
This is a journey that I wish I didn’t have to take. But, I will put on my big girl bra and panties and take it.
The Engledow Chronicles 