Monday 12 March 2018

The reconstruction saga continues: Part 1

When is enough, enough? I kept asking myself that same question everyday. Breast reconstruction is never a perfect process and I’ve spoken openly about my surgeries in the past (here and here) because I know I’m not alone. I had high hopes going into my last surgery but found myself feeling deflated the moment I removed the bandages and saw the indents and extra skin that still remained. A feeling that I know many can relate to. My surgeon told me to wait a few months for the implants to settle into place, but we both knew I would need another surgery to get my breasts to where I could feel like myself again.

My affected right breast had surprisingly caused me little to no complications throughout the reconstruction process. It was the perfect size and shape and only had a minor dip where the lat flap and breast tissue didn’t sit flush. But it was my left non-affected side that caused the most pain – both physically and emotionally. Every time I looked in the mirror, I saw the loose skin hanging from the bottom of my breast and the indents and valleys. Trying on bras felt like a demoralizing process. My left breast wouldn’t fit into bras that fit on the right and I would leave the store empty handed and deflated. I wanted nothing more than to fast forward a few months to get this next surgery done hoping this time would be the last.

I kept myself busy over the next few months exercising to strengthen my body again and travelling to both NYC for the AnaOno x Cancerland fashion show and Orlando for the annual YSC Summit (blog post to come later). It felt great to leave my worries behind and connect with other women who knew exactly what I was going through. But once I returned home and the reality set in that my surgery was coming up in just 5 days, a feeling of dread began to pit its way into my stomach. The thought of being put under again and, even more disconcerting, the thought of waking up and being unhappy with the results again. I wanted nothing more than for this to be all over. 

As the day before surgery approached, I found myself going through the all too familiar motions: food prep, laundry, cleaning the house and packing my bag before I was holed up for another few weeks. The same feeling of sandpaper across my skin as I scrubbed every inch of my body the night and morning before surgery. The same green and blue hospital gowns and sterile smells. The flashbacks from every time I sat in this same room with my husband awaiting yet another surgery. From the lumpectomy after I was first diagnosed to the mastectomy I underwent after finding out my margins weren’t clear to the implant exchange to get rid of the rock hard expanders in my chest. We were both done.

When my name was called to go back into the surgical area, I found myself speaking first with the anesthesiologist to address any concerns with being put under. The one thing about going in for multiple surgeries is you get to know your body really well: how it responds to anesthetic, how it wakes up, what makes it angry. In past surgeries, I woke up in a state of panic, feeling restricted by the bandages and finding myself calling desperately to the nurse for an Ativan. Full disclosure here…I also suffer from mild claustrophobia so the thought of being restricted amplifies the panic attacks tenfold during times like these. I also get nauseous when I wake up so the anesthesiologist reassured me she would administer both some anti anxiety and anti nausea medication intravenously to avoid that happening.

My plastic surgeon then came in to discuss the procedure and began his extensive drawing on me once again. I would be undergoing fat grafting, a procedure that involves taking fat from one area of the body and grafting it onto another. Although I had a petite frame, he found the best option was to remove fat from my stomach which would then be used to fill in the gaps around my breasts. The loose skin around my left breast would also be removed, requiring a 3-inch incision along the lat flap scars on the underside and sternum side of my breast. As I got wheeled into the operating room and the IV started in my vein, I looked around and thought to myself I hope I never have to see this room again. 

As the anesthetic wore off and my senses slowly awakened, I began to feel the pain and discomfort in my breasts where the surgeon had made his incisions. I couldn’t feel any pain in my stomach though and panicked for a second wondering if my plastic surgeon had in fact done the fat grafting. But the lack of feeling and numbness in that area quickly reassured me and I drifted off into sleep again. 

After a couple of hours in recovery, I was finally feeling well enough to go home. My husband Josh came in with my chariot (wheelchair) but first helped me get changed out of my hospital attire and into my regular clothes. I had packed items that were easy to get on including this oversized Amoena Valetta camisole top with built in shelf bra which fit perfectly over my bandages as well as a pair of loose fitting yoga pants and flip flops. Once back at the car, I wrapped a blanket gently across my lap to protect my stomach from the seatbelt chaffing and a ParkPuff to cushion against my chest.

I had been sent home with antibiotics and medication to help take the edge off from the pain but I could feel it start to creep up again as it wore off. My left breast ached where the plastic surgeon had made his incision and the hot flashes were starting to flare up in my body again like clockwork. All I wanted to do was to nestle myself in bed but sleeping can be a bit tricky too. I always find myself worried about squishing my breasts and having the incisions open up. So, out came the pillow fort again, two pillows behind my back and one on either side of me to hold my arms up and provide a cushion against my breasts. 


As I woke the next day, the pain in my breast felt like it had subsided but the nerves around where the fat was taken had clearly woken up. My stomach was extended and swollen and I felt pain and tenderness with every movement. The last thing I wanted to do was go in for my Zoladex injection but it had already been put off because of surgery so that the micro tablet didn’t get in the way of the fat grafting. I wondered though how I was going to handle a subcutaneous injection in my stomach when it hurt to even put on pants! But if I could make it through everything I’d been through thus far, then surely, I could get through this too. My gp oncologist froze the area with a topical spray and quickly gave me the injection so I could get back home and rest. 

And rest I did. I watched more Netflix than I thought possible and stayed in bed for over 12 hours, waking only long enough to take my pills and crawl back under the covers again. Two days had passed since surgery and I knew that once I finally found the energy to get out of bed, it was time to face my fears and take off the bandages. I could feel myself holding my breath as I unraveled the bandages, the fear of disappointment and heartache setting in once again. But as the last of the bandages came off, I found myself letting out a huge sigh of relief. While my breasts were not perfect by any means, the extra skin was gone this time and the indents had been filled out. I finally said to myself what I had been waiting for for almost 2 years. I am done.

I’m now one week post op and continue to live in my yoga pants (while the swelling keeps going down in my abdomen) and my super cozy AnaOno compression bra (which I have to wear until I see my plastic surgeon in two weeks). My stomach still feels tender to touch and the bruising is starting to come out leaving me with a painted yellow hue but the pain meds have become less frequent. And I finally got out walking again which is a huge plus. But what has been most rewarding is finally coming to a place where I feel comfortable in my own skin again and accepting that I am perfectly imperfect.

Sunday 4 March 2018

What to Pack for Day Surgery


Getting all packed up and ready to go for my fourth surgery first thing tomorrow morning. I’ll be undergoing breast revisions including fat grafting and removing excess skin with the hopes that this will be my last surgery. Although I am supposed to be in and out of the hospital within the same day, there are a few things I like to pack with me to not only keep me occupied but just in case my stay ends up being a bit longer than anticipated too. Here’s a list of items that I will be bringing with me for day surgery tomorrow:


1. Book/Magazine/Journal


As many of you know, there can be a lot of time spent waiting before going in for surgery. I always bring a book to help pass the time and to also distract myself a bit from the nerves and butterflies fluttering in my stomach as I wait for my name to be called. Lately, I’ve been reading The Subtle Art of Not Giving a F*ck which is a hilarious and thought provoking take on the things we value most in life and what it is that’s worth pursuing.


2. Cellphone, headphones & portable phone charger


Just as a book or magazine can be a good distraction, having your cellphone to listen to some music or just scroll through Facebook or Instagram can be a good way to get your mind off things as you wait. Remember to bring your portable charger though just in case you spend a little more time than anticipated waiting to get called in.


3. Medications


Even though I’m scheduled for day surgery and should be in and out of the hospital within the same day, I like to pack any medication I’m on on just in case things don’t go as planned. I normally take my Exemestane in the morning but will need to take it later in the day since I’ll be off food and water for a few hours pre-surgery.


4. Travel wipes and moisturizing products


Surgical iodine is often used to prep the skin before surgery to eliminate any bacteria but it stains your skin leaving you with a pinky/reddish residue. I pack these all natural Caboo bamboo travel wipes with me everywhere I go which work great to clean the iodine off. Eye drops and lip balm are also a staple in my day bag too so I can moisturize my eyes and lips post surgery and feel refreshed.


5. Mini fan


There’s something about surgeries that gets the hot flashes raging and feeling like a volcano is erupting inside my body. My best friend brought me a mini fan after my mastectomy and latissimus dorsi flap reconstruction surgery in June and it was the best thing ever to cool me off post surgery. They are cheap too and can usually be found at your local dollar store or any one of the big box stores.


6. Comfortable clothing


Getting into clothes after surgery can be extremely difficult between the pain and limited range of motion. I always opt for a top that either buttons or zips up or one that I can easily slide on. This Valletta tank top by Amoena is both soft and stretchy and has a built-in bra liner to give a little added support. For bottoms, I choose something that is loose fitting and easy to pull on like yoga or pajama pants. Slip on shoes are also recommended or a pair of hard soled slippers.

7. AnaOno compression bra:
AnaOno pocketed front closure bra

I’ve heard so much about the AnaOno bras and was excited to finally purchase this one through Gorgeous You, a company in Canada that carries mastectomy bras, swimwear and lingerie. This bra clips in the front and has 4 different settings allowing you to tighten or loosen it up to whatever feels most comfortable post surgery.


8. ParkPuff seatbelt pillow

SurvivorModa ParkPuff in Betty Bouquet


A few months ago, I won this amazing ParkPuff from SurvivorModa during the Cancer Grad breast cancer awareness month giveaway and I’ve been using it ever since. It folds and closes over the seatbelt strap in your car and provides cushioning on either side of your chest so you don’t have to worry about the seatbelt pressing into your chest and causing any discomfort post surgery.


9. Snacks!


If you’re like me, you will be absolutely starving post surgery! I’m an all time snacker and lover of food so having to refrain from eating anything after midnight is a challenge. I like to bring a simple and easy snack such as an apple, one of my homemade carrot muffins (recipe coming soon) or a granola bar (I love these honey oat ones from Kind) to get a little something in my belly post surgery and ward off the hunger pangs until I get back home.

Is there anything missing from this list that you would recommend packing for day surgery? I’d love to hear your suggestions below!

Friday 12 January 2018

Hormone Therapy

Chemo, radiation, surgery. Our bodies feel like they've been put through enough. But for the large number of women with hormone receptor positive breast cancer, it is often recommended to take hormone therapy for 5 to 10 years which comes with its own set of challenges, most notably early menopause. Now that I’ve been on hormone therapy for almost one year, I wanted to share an open and honest blog post about my experiences going through it and the side effects that I continue to navigate my way through. 

So, what is hormone therapy?


Hormone therapy involves taking medication to reduce the amount of estrogen in the body and block its action by starving the cancer cells of its source. The pros? Reducing the risk of recurrence in early stage breast cancer up to a third. The cons? Being put into menopause much sooner than anticipated and dealing with the long list of side effects that go along with it.


Hormone therapy options


As I neared the end of my treatments one year ago, my oncologist set up an appointment with me to discuss the next steps in my long-term maintenance plan. I would be put on hormone therapy for 5 or 10 years and was given a list of hormone therapy options:

· Tamoxifen for 5 or 10 years

· Tamoxifen with ovarian suppressor (OS) for 5 or 10 years

· Aromatase inhibitor (AI) with ovarian suppressor (OS) for 5 or 10 years

He recommended that I look at the SOFT and TEXT trials to make an informed decision on what worked best for me. The trials found that the combination of taking an AI with an ovarian suppressor had significant benefits for high risk pre-menopausal women over taking Tamoxifen with an ovarian suppressor.

Based on the studies, I decided to go with the option of taking an AI and ovarian suppressor which my oncologist felt would be the most beneficial in my case as well. AIs are typically only used in post menopausal women but can be given to premenopausal women if combined with an ovarian suppressor. So, I was given my first Zoladex injection one month prior to starting on an AI called Exemestane to shut down my ovaries and put me into a chemically induced menopause for the next 5+ years.

***Update: According to new long term results (see link), the data now shows that the benefits aren’t nearly as great as once thought. While the AI + ovarian suppressor combo has a better DFS (disease free recurrence rate), the new results show it has the same OS (overall survival rate) as taking Tamoxifen with an ovarian suppressor.



What to Expect


The Zoladex injection is administered subcutaneously every 28 days and comes as a preloaded syringe containing a slow release tablet of goserelin acetate. My GP Oncologist administers the injection every 4 weeks and uses a topical anesthetic spray called Pain Ease to numb the injection site. The downside is it only freezes the top layer of skin so I still feel a poke from the needle once it’s inserted (it's a doozy at 16 gauge). Thankfully my doctor is quick with the draw and she’s done before I even have a chance to think about it. I’ve also been hearing a lot about Emla cream, an over the counter topical numbing cream, which can be found in some local drugstores and is definitely worth checking out.


Side Effects


The side effects from hormone therapy can only be described as a rollercoaster ride for me. Some days it feels like I’m coasting free while others I am struggling to get through. I’ve listed some of the side effects I’ve been experiencing since starting hormone therapy but please keep in mind these differ for everyone:


Hot flashes


I’m normally one of those people who are cold 24/7 and cozied up on the couch wrapped in a blanket. Once the hot flashes arise though, it feels like my body goes from 0 to 100 degrees in about 2 seconds flat leaving me red faced and agitated. I’ve learned the art of layering and having a fan on me at all times especially at night. The hot flashes seem to flare up most often when I get stressed out or anxious which leads me to the next side effect.


Anxiety and panic attacks


I never knew what anxiety or panic attacks were until recently. The feeling of agitation in my body where I don’t know what to do with my hands or feet. Or the shortness of breath and overwhelming thoughts. It pops up when I least expect it: driving to the store, having dinner with my family, or as I lie in bed at night. I’m trying to incorporate more relaxation techniques like yoga and breathing exercises to quiet the noise but it is a work in progress.

Inability to focus/concentrate


Even as I sit here and try to think of the words to say, it doesn’t flow as easily as it once did. My brain feels foggy and I get incredibly frustrated with myself at times. I wonder if people think I am listening when I ask them the same thing over but it is more frustrating for me than them because I wish I could retain and recollect the information.

 


Insomnia


Full disclosure here. I’ve always had some difficulty with sleeping but never to this extent for this long. I can’t count the amount of times I’ve watched the sun rise, blogged until the wee hours of the morning, and crawled into bed at 6am after finally pushing my body to the point of exhaustion. I’ve tried melatonin, magnesium, meditation, good sleep hygiene, you name it. I hate to take sleeping pills but getting a restful night of sleep is much better to me than not sleeping at all. But there is nothing more I crave than a pure restful night of sleep not induced by medication.

Bone and joint pain


As I lie down in bed at night, I can feel the deep ache in my upper legs. It feels similar to the achiness from the Paclitaxel I was on during chemo and then sits subtly through the day until night falls again. When I wake in the morning, my hands and fingers feel like they need to be carefully stretched so as not to break. Sometimes I wonder if I sound like an old 80 year old woman complaining about her aches and pains. Just get me a bottle of WD40 to lubricate my joints! Some of the things I’ve found helpful though are soaking in Epsom salts to relax the joints and walking and yoga to keep things moving.

Arthritis and osteoporosis


Prior to starting Exemestane, my oncologist ordered a bone density scan to check how healthy my bones were and to see if I was at risk for osteoporosis. While AIs are less likely to cause blood clots than Tamoxifen, they have a much higher rate of bone loss and fractures. Seven months after starting Exemestane, I noticed my right thumb joint was extremely sore and painful and I could barely manage to lift the water jug from the fridge. The first thought that went through my head was cancer but an x-ray confirmed that I had developed arthritis in my thumb (and possibly the rest of my hand), likely from the medication I was on. Right now I am taking calcium and vitamin D to maintain my bone health, but my oncologist has also recently recommended starting on a bisphosphonate in the near future called Zoledronic acid to strengthen my bones. I’m still on the fence about it though as it has its own set of side effects that are not to be taken lightly.

There are times when I wonder, is this all worth it? Do I continue through these next 5 or 10 years experiencing this myriad of side effects? But it is also feels like I am blanketed with this security and hope that the medication will reduce my risk of recurrence. How do you all deal with the side effects of hormone therapy?