Category: Our ILC Journey

We are six months out to the day that I found my ‘lump’, and almost five months out from surgery. Everything looks ‘normal’ yet I am still healing on the inside. To the average person, you probably would not notice anything different, except when you see my stand up as I am a little slower than usual. The knots in my incision still give me issues; however, the days are becoming easier with movement, only a little tightness in the abdomen (this can last up to a year). The ‘foobs’ are doing great, and only have pain in them every now and again. The left hip is still giving me grief as it is not completely healed, but slowly we are getting there. There were three holes in total, now just two, so we are making progress. I am hoping to have this part done before Thanksgiving or at least my birthday – that would be a great present to myself! And I actually wore a pair of leggings this past weekend, and was able to wear them all day without too many issues. It is the little things! Who knew I would miss wearing pants so much.

I know it has been a couple of weeks since I have posted. I look at my computer, and think, I really need to fire it up and journal this week. And then I find a dozen other reasons not to because when I sit down and gather my thoughts, it brings up all the memories and the what if’s of this journey, and to be honest, it is difficult to sit there amongst it all. Journaling is a healing process, yet at the same time a struggle. Stephen asked me last night how I was, and my response was I am surviving. I could tell by his response that he was not happy with that answer; however, that was the honest truth. Some days I just want to scream and cry because I am tired – physically, mentally, and emotionally. There are days, I do just that…I cry and let it out, or I sing really loud to my music to push through it. Music is more than sound; it’s a vibration that resonates with the very core of our being. It speaks the language of the soul, stirring forgotten memories and evoking emotions too complex for speech. There are times when no advice or conversation will help, but hearing that one song sometimes is all that is needed to extend a lifeline to help you breathe and feel yourself again. So if you see my jamming along in the car – join in or just ignore me because sometimes you need a good jam session to make your day better.

It is messy, the space in between. The diagnosis and first surgery chapter is closed, and now you are in recovery and waiting for the next part. I am trying to move forward, yet I almost feel stuck as I need the last of the puzzle pieces to come together so we can hopefully close the surgery chapter for good. The waiting can be very hard, and February seems so far off, yet the year is almost over. Still unsure how it is already November. I have a second opinion with a specialist in December. I am wanting a few answers that I feel my current oncologist is unable to provide, so we are headed to MD Anderson to see Dr. Mouabbi and possibly transfer care to him.

I am finding this part of the journey is for healing and waiting; and I am slowly learning that it is okay to be in this space right now. Healing isn’t about the clock or calendar, it’s about choosing to keep going, no matter how slow, one moment at a time. I will try to not to wait so long for the next post. Have a beautiful week and enjoy each moment!

Much love,

Deandra

As I sit here drinking my coffee and sharing my thoughts, I realize I am angry. I am angry at what all has been taken from me and my family. My body, my peace of mind, and my confidence have all been effected and I am trying each day to combat each of those and have a more positive outlook.

My body, to me, is mutilated – I have mounds where my breasts used to be with circles instead of an areola or nipples. Now with clothes on they look normal but underneath tells a different story. I am very fortunate as mine have not rejected anything or had an infection. The left breast tried to give us issues along the lower incision as it was taking a little longer to heal; however it is finally smoothing out. I long for the end of next year when I can tattoo them and cover up the scars and find a way to accept them as they are. The incision that stretches from hip to hip actually does not bother me as much. The setbacks I am having are frustrating and bring me down right now more than anything else. We are coming into Fall where pants are worn more. I am having hard time wearing pants currently because of the issue of the open incision and the necrosis along the incision line as well. Anything that constricts that area causes pain. So you will more than likely see me in dresses, skirts or my new favorite OVERALLS! I have found some cute ones and love them! I am having to outfit a whole new wardrobe, something you do not really think about during all of this.

I had to fight with the insurance company last week. I was trying to refill my last bottle of Tamoxifen, and they stated for insurance to cover it, I would have to transfer it to a different pharmacy AND get a new 90 day prescription. I see my oncologist next month to see if I will be staying on this medication or moving to a different estrogen blocker. I told the insurance company they are basically wanting me to spend more money to get the 90 day refill which I may or may not need, plus switch my prescription to a different pharmacy that may or may not have the brand that I have to take. I called around to several different pharmacies as I already know that I cannot take the Aurobindo brand (or the Mayne brand because it uses the same fillers), and literally every pharmacy around me and CVS Caremark dispenses both of those brands. I finally found a pharmacy that had the Mylan brand, and with the goodRX coupon it will only cost me $20 out of pocket. It was important to me to make sure that I kept the side effects as minimal as possible, even though I knew there would be side effects that I would have to combat like possible mood swings, fatigue, hot flashes, and my least favorite weight gain. However, I have worked hard over the past two years to lose weight and be a healthier version of myself. And then BAM, cancer decides to rear its ugly head. Right now, I have to fight twice as hard to keep the weight off and find a way to combat the swelling it causes. I weigh almost every morning, and most days I feel so defeated because right before all of this I almost made it to one of my goals I had set for myself. I am trying hard not to let the scale have control over my feeling good or bad about myself. I am learning that this is a process, and that with time, I will get there again. It is something I have been researching and working on to find the right answer. As not only do I have to watch what I am eating for possible weight gain, I also have to look at the ingredients to see if there is something that A – interacts with the medication I am taking and B – is there anything that is not recommended due to my cancer being driving by hormones. For example, Turmeric is a wonderful supplement; however, it will negate the effects of my medication so I cannot take it and foods to avoid for estrogen positive breast cancer are citrus fruits, meats with hormones added, milk, and a few others.

I find that music helps my peace of mind because it is wonderful medicine for me. It can totally change my mood for the good or the bad and speaks to my soul. Prior to all of this, I was an avid Audible user and listened to several books a month, not as much as Stephen, but still managed to finish a book a week. During all of this, I found it difficult to quiet my mind and music was my comfort. However, lately, I am finding it easier to listen to my books, which means my mind is lessening the thoughts of worry. I saw my breast surgeon this past week and when she told me that she would see me again in six months, I point blank asked her why. She stated because we cannot guarantee that we can (or did) get everything and you still need to be monitored for reoccurrence. I felt like she hit me with a ton of bricks, as reoccurrence seems to always be in the background screaming at me. Even though right now we are technically in the clear for breast cancer, it remains a cloud overhead, a constant reminder of a potential threat. People callously assume that because the surgery is done that everything is good, no worries, however, this is the farthest from the truth. Like a soldier in the combat zone, we have to constantly be on vigil, even though no bullets are currently flying, there is always the threat of a loaded gun lurking in the shadows.

October 15th is Global Lobular Breast Cancer Awareness Day and is to shine a spotlight on the 15% of breast cancer diagnoses each year that are lobular. Lobular Breast Cancer is the 2nd most common type of breast cancer with over 46,000 women diagnosed each year in the US, but it receives less than1% of breast cancer research funding and has no specific treatment. It is a distinct type of breast cancer that may not form a lump, so is often missed on mammograms and diagnosed later when tumors are larger.

These past few weeks have been a struggle. I cannot seem to find my way through the path I am on right now. They say that Cancer is a marathon, not a race and to pace yourself. I keep remembering back to the beginning and how fast everything seemed to be happening – mammogram, ultrasound and biopsy all the same day – this typically does not happen this way. I was very fortunate, and then for the results. Is it Cancer? Is it something else? I had the whole weekend to ponder and think of the what if’s but already knowing in my mind what the answer was and the storm that was coming. I was being thrown into a marathon that I had not signed up for and desperately wanted not to join. But here I am, here we are in this race.

I had some idea of what to expect next as I had watched my daughter tackle this part of the race. I had a surgeon, plastic surgeon and oncologist all lined and ready for the handoff. It is different when you are a spectator watching the race, offering support and cheering them on; so many things you thought you knew about the race but really had no clue. Now I find myself on the other side wearing the ILC jersey, making sure I have the right attire for this particular part of the journey, i.e. are we eating the right foods, getting enough sleep, do we have enough medical supplies on hand. I am trying to find my pace, sometimes speeding up then realizing I need to slow to a nice and steady pace but so badly want the race to end. We are still in the healing phase and I was reminded of this again last week. I had finally reached a point where NO extra bandages were needed and everything was closed up. And just where I was getting to the point of celebrating, my body said nope, just kidding, and we are back in needing to dress wounds. My left hip which has had no issues this entire time decided it was feeling left out and wanted to join in the fun. I have a small hole that has decided to open up along the incision line and we are now having to dress it twice a day. I, at least, can celebrate the fact that I no longer have to wear extra padding, extra panties to keep everything in place and I no longer have to wear a bra (that is celebratory in and of itself)! We will get through this part, it is just a little frustrating.

Someone in my group said that Cancer can be the best teacher and best journey. You need to pace yourself, take that vacation or spend more time doing the things you love. I realize that this is truly only the beginning of the marathon and I need to slow down, breathe and focus. I will find my way eventually. I just need to take it one day at a time.

Have a beautiful week,

Love, Deandra

October is breast cancer awareness month. The color pink is everywhere! For many women in my groups, the posts and advertisement irritates them. They see so many companies trying to capitalize on this disease without giving back or helping to find a cure. Some women also have a hard time because it brings back all of the memories associated with their diagnosis and treatment. I choose to see it as awareness, helping remind everyone to have their screening done and to also do monthly self exams. My daughter’s cancer was found 3 months AFTER an examination by her doctor because she did monthly self exams. Knowing your body is so very important. Unsure how to do a proper self breast exam? BreastCancer.org has a 5 step How To for Self Breast Awareness.

Have you had your yearly mammogram? Do you have dense breasts? As of this year, radiologists will have to report the degree of density in your breasts. This is a good thing because highly dense breast tissue is considered a risk factor for developing breast cancer. Dense breast tissue can make mammograms harder to interpret. Talk with your provider and ask if you should have a diagnostic mammogram, MRI or ultrasound instead of a regular mammogram. In the United States, 1 in 8 women will develop breast cancer in her lifetime. It is the second most common type of cancer for women, following skin cancer.

Diagnostic mammograms are not always covered by insurance or require you to pay part of your deductible and can be for so many quite expensive. Do you or someone know need help in obtaining a diagnostic mammogram? There are a number of places that may offer free or low-cost diagnostic mammograms, including: 

• National Breast and Cervical Cancer Early Detection Program (NBCCEDP): This program from the Centers for Disease Control and Prevention (CDC) provides free or low-cost mammograms to low-income, uninsured, or underserved women. You can contact your local health department or call the CDC at 1-800-CDC-INFO (1-800-232-4636) for more information. 

• National Breast Cancer Foundation: This foundation offers grants for free mammograms and diagnostic services to people with low income, no insurance, or limited insurance coverage. You can search the foundation’s National Mammography Program to find facilities near you. 

• American Breast Cancer Foundation (ABCF): This foundation offers screenings and diagnostic tests for people without insurance. You can call the foundation at 1-844-219-2223 or email info@abcf.org to apply for assistance. 

• Local health departments, hospitals, and women’s centers: These organizations may offer free or low-cost mammograms. 

• Breast Cancer Awareness events: These events may offer free or reduced-cost mammograms to low-income and uninsured people. 

• Federally Qualified Health Centers: You can contact a local Federally Qualified Health Center for help. 

• Healthcare professionals: You can ask a healthcare professional about patient assistance programs or help locating a program. 

Please call and make an appointment for your mammogram – do not delay!

Have a beautiful week ~

Much Love,

Deandra

We saw the plastic surgeon this past Thursday. I have been looking forward to this appointment all month. This is when we were to discuss phase 2 which for me would mean doing what he thought needed for the breasts – symmetry and maybe a lift, and also discussing cleaning up of the necrosis in my abdominal incision. On each of my breasts, there is a lollipop scar where they took the nipple and areola. I thought that these would be removed, but he said that they would stay, which surprised me. I was under the impression they draw those in and take that part out, but apparently I was wrong, maybe it is because I am not having nipples done. He said they could do a tattoo of an areola but I really do not want that as I will eventually get a tattoo over both breasts, and I also don’t see the point since there are no nipples. We also talked about needing to remove the necrosis tissue (I have 3 areas along my incision) that need to be removed. These cause pain when going from a sitting to standing position or if I move a certain way, and they also protrude along the incision and make it difficult to wear pants/jeans. He really wants to wait 4-6 months for my body to properly heal so that we do not have any issues like we did with the original reconstruction. So, that means the surgery will not take place until February of next year. My heart sank when he mentioned this, and I am sure as I nodded with understanding and even said out loud, I understand, my eyes told the true story. I mean, I get it, I do, my body needs to heal on the inside COMPLETELY before we go in and fix the issues but that is not what I wanted to hear. I really want this phase to be done and over. I let myself feel the feelings of being sad over this news and then I moved on. I cannot change this outcome and so I felt there is no need to dwell on it after acceptance of it.

Since my lab work still states premenopausal, I am on Tamoxifen for my hormone therapy medication. I started taking this medication earlier this month, and let me tell you the side effects are no joke. There are 7 different brands/manufacturers for this drug. They all use different filler ingredients to make it. My first prescription was filled with Aurobindo, which is the most common, however, it has 8 extra fillers and the side effects were awful. Side effects from these drugs since their goal is to put you in to menopause are hot flashes, weight gain, bone and muscle pain, memory loss and a few others. With this particular brand, I experienced mild hot flashes (so grateful for this). It made my feet swell. I also had extreme exhaustion, flu like symptoms in my legs (all day), tailbone pain, bruised bone pain in the knuckle of one of my fingers, confusion and not being able to remember if I did certain tasks or not. I called my local pharmacy and asked what band they used which is Mylan (only 6 of the possible 15 fillers). I started taking the new brand this past week – oh the difference. While I am still tired, the extreme exhaustion is gone – it was so bad that I would struggle with driving and wanting to pull over and just sleep. The flu like symptoms are not as severe, the tailbone pain is subsiding and easing up, and the confusion and memory issues are gone. I am older so yes, there are still some memory issues (my kids will laugh at this and agree) but nothing like I was experiencing earlier this month. I am considering contacting a compounding pharmacy and having them make this drug without all of the fillers – I mean, seriously, why do they add all of this junk in there? I have also learned that taking this medication at dinner time helps in me not being so tired during the day. I am still struggling with the weight gain, thankfully right now only 5-6 pounds but when you have been trying to lose for over a year and struggled even then, this can be very frustrating. So I am even more vigilant about the types of foods we eat – nothing processed, minimal to no sugar, okay, only Stephen’s homemade cinnamon swirl banana bread – it is sooo good! But we are very careful in what we buy and make sure it is more natural and fresh. I have also started walking every morning before work and it helps with the stiffness and muscle aches.

I meet with the breast surgeon for follow up this coming week and then with my oncologist in November for new blood work and to discuss the medication.

Can you believe September is over? Crazy how fast this year has come and gone!

Much love,

Deandra

As I sit here this morning waiting for my coffee to finish brewing, I think back over the past four months and the changes we have endured together. There is the innocence phase where you are unaware of anything different going on and you are living life normally. You are making plans and preparations, then you find something that is not quite right and stops you dead in your tracks. Then you have the call or the reading of your results in the portal (at least for me) – this is where things change and you get your diagnosis. In this stage, you are unaware of what is coming but you know life will never be the same. This is when you can experience anxiety, panic and worry wondering what the next steps will be – will I have chemo, radiation, what type of surgery will be recommended. To be honest, I did not dwell too much on chemo, if I needed it then I would face it head on, my true worry was for radiation and would my plastic surgeon accept me and do the surgery (he has a very strict BMI guideline and I was borderline). Then you receive your course of action. For me, it was surgery with reconstruction, then I learned that I did not need radiation nor chemo and would only be put on hormone blockers. Right now, I am in the recovery phase. You are focused on recovery and not much of anything else. We are making sure that everything is completely healed for the next surgery. Once all the surgeries are complete, then we will start life on this new path. However, I still have tiny moments where I forget the journey we have been on the past few months, and in that fleeting moment I do not have cancer, my body has not been mutilated and life is normal – then reality slaps me in the face and I am brought back to our ‘new norm’. It looks the same from the outside, however, if you really look closely you will see the subtle yet drastic differences.

I went back to the office a week and a half ago. Someone at work commented on how I do not seem ‘myself’ and I have thought about that comment most of this week. My diagnosis is still young and fresh. I have had my surgery and I am definitely on the healing and recovery track, but emotionally and mentally it is still raw. It is talked about a lot in my groups, how this diagnosis brings on a period of grief, and life will never be the same again. You have to grieve and learn how to navigate this new path you are on without any true set of directions. Yes, mine was caught early and for that I am extremely grateful as well as not having to have chemo (although that brings relief and guilt, which both are valid); however, life will never be the same again. While I was diagnosed with what they call an ‘early stage’ and is a great prognosis, the toothpaste is out of the tube so to speak and cannot be shoved back in. It is harder for people to see and understand, because you may look great on the outside but so much more is going on that cannot be seen. To be honest, I am not myself, and I am not certain I will ever be that same girl before cancer – I can almost with certainty say that I will not be the same version of her. My focus is different as are my goals in life. I live life right now in the moment making the best of every day with a fear of reoccurrence. It is always there lurking and peering its ugly head in my face. Because my breast cancer is estrogen positive, I have to make sure that I am not feeding the cancer, so I have a list of foods and supplements that are not recommended as they pose a risk of raising the estrogen which can bring back the cancer. I also have a running of list of certain foods and supplements that interfere with the hormone blocker I am on, and is quite the list so far and things you would not think would cause issues but they do.

Life of late has been exhausting, not necessarily physically but oh so mentally and emotionally. I play this song by Ben Rector almost daily, Living My Best Life. Music helps me so much and literally speaks to my soul. I will put the lyrics at the bottom and a link for the song. So much of this song resonates with me right now and I love his music. So if you see me and I do not seem the same or a little off, I ask for some grace during this time as we navigate our new norm and find our way.

Much Love,

Deandra

Living My Best Life – Song by Ben Rector

This house is now a litany
Things I thought I’d never be
A man who has opinions on an ottoman among other things
I used to think I’d miss the road
The crushing fame and sold out shows
I just sing head, shoulders, knees and toes
Like I’d forgotten ’em

But I’m alive and
Baby, I’m thriving
Oh yeah

I’m living my best life
I wake up with the sunrise
It does not look a thing like I thought that it would
I’ve been getting my steps in
And I sleep with my best friend
It’s the best that it has been in a long time
I’m living my best life (living my best life)
Yeah, yeah, living my best life, yeah (living my best life)

Sometimes it sucks to tell the truth
And I took it hard like people do
But I’m learning how to eat the fruit that is in season
Never thought I’d be a grown ass man
But you know what they say of best laid plans
Now I’m holding on to my daughter’s hand
I’ve got a reason

To be alive and
Oh yeah
Baby, I’m thriving
Yeah, yeah

I’m living my best life
I wake up with the sunrise
It does not look a thing like I thought that it would
But I’ve been getting my steps in
And I sleep with my best friend
It’s the best that it has been in a long time
I’m living my best life (living my best life)
Yeah, living my best life, yeah (living my best life)

Come on
I’m living my best life
The best that I can
No more worry or stress life
‘Cause I’m done with them
I’m as light as can be
I’m as fresh as a breeze
Right where I wanna be so
If you need to find me

I’ll be living my best life
Waking up with the sunrise
Looking at things like what the actual hell
But I’ve been counting my blessings
And I sleep with my bestfriend
It’s the best that it has been for a long time
It’s the best that it had been for a long time
I’m living my best life (living my best life)
Yeah, yeah, living my best life, ooh (living my best life)
I’ve been living my, living my, living my best life, ooh (living my best life)
(Living my best life, ooh)

Did you know that there are at least 15 different types of breast cancer? And that you can have multiple types at the same time. Below are a few of the different types and the rarity (percentages) according to the Breast Cancer Research Foundation.

Invasive Ductal Carcinoma (IDC)

IDC accounts for 80 percent of breast cancers. Invasive ductal carcinoma begins in the milk duct but has spread outside the duct into other tissues.

Ductal Carcinoma in Situ (DCIS)

DCIS is cancer that began in the milk ducts and has not yet spread. DCIS is usually easy to treat, but it can lead to invasive ductal carcinoma later in life if not treated.

Invasive Lobular Carcinoma (ILC)

ILC accounts for about 10 percent of invasive breast cancers. ILC begins in the lobule of the breast, but it has spread beyond the cells of the lobe into other tissues. This is often called a sneaky cancer because it is so hard to detect.

Lobular Carcinoma In Situ (LCIS)

LCIS is a collection of abnormal cells that forms in the milk-producing cells of the breast. Although the term “carcinoma” implies cancer, the cells in LCIS are not yet cancerous, but they can indicate a higher risk for developing invasive breast cancer later on. LCIS is fairly rare and mostly occurs in women who have not yet entered menopause.

Paget’s Disease of the Breast

Also known as Paget’s disease of the nipple, this condition causes an eczema-like appearance to the nipple and areola (the skin surrounding the nipple), which may become red, scaly, and itchy. Nearly all women who develop Paget’s disease of the nipple also have cancer deeper in the breast tissues. Paget’s disease makes up less than 5 percent of breast cancers.

Inflammatory Breast Cancer (IBC)

IBC is a rare form of breast cancer, accounting for only about 1 percent of cases. Inflammatory breast cancer causes the entire breast to swell and redden or darken, and symptoms become more serious quickly, sometimes within hours. IBC grows and spreads aggressively. IBC is more common in Black women than white women.

There are also different subtypes based on the characteristics of the tumors. Understanding the different subtypes helps to determine the correct treatment plan.

Hormone and HER2 receptor status

The four main subtypes are:

• Luminal A

• Luminal B

• HER2-enriched

• Triple-negative/Basal-like

Typically, patients learn whether their breast cancer is being fueled by estrogen, progesterone, or HER2 receptors—or none of these.

HR-positive breast cancer

This is mine, I was diagnosed estrogen receptor (ER) positive, and progesterone receptor (PR) positive – this is also called hormone receptor positive breast cancer. It is the most common form of invasive breast cancer and has the best outcome when diagnosed early. It is usually treated with hormone suppression.

HER2-positive breast cancer

The mutations in the HER2 gene cause an overproduction of HER2 protein, which drives excessive growth of breast cancer cells. HER2-positive breast cancer tends to be aggressive.

Triple-negative breast cancer

Triple negative breast cancer means it is negative for the three main receptors (estrogen, progesterone and HER2. TNBC accounts for approximately 15 percent of diagnoses. Lauren was IDC Triple Negative.

On this day in 1990, we said I do. Little did we know the mountains and valleys that we would encounter along this 34 year journey. We have lived in six states and two countries, raised four beautiful children, welcomed two more into our family, and have five amazing grandchildren. We truly are blessed.

These past few months have been a true testament of the commitment and love this man has for me. He has sacrificed so much to make sure I am comfortable and well taken care of way past his own needs. He is truly one of a kind and I am forever grateful that he is mine. He will randomly send videos and songs to remind me that he loves me and what I mean to him. I cannot imagine doing life with anyone else. You truly are my best friend and soulmate.

A little marriage advice – pick your battles (not everything is worth arguing or fighting over, almost nothing is), date each other always, never speak down about your partner to others, remember to laugh with each other and make an effort every day to love them.

I love you Goudy, Always N Forever