Beyond Blessed

It has been a month since my surgery, and I wanted to reach out and say thank you for all of the texts, calls, cards, visits, and thoughts/prayers during this time. They are all very much appreciated and I am beyond blessed at the show of love and concern.

My work set up a meal train and a few others also sent some meals which we are so very grateful as it took a lot of pressure off of Stephen during the first few weeks while we learned a new routine. Not having to plan for dinner was a huge burden lifted. A special thank you goes out to the ‘Bahrain Misfits’ - love you guys!

Keep those prayers, good thoughts/juju coming - they are still needed!

So very blessed,

Stephen & Deandra

Shout it from the mountain tops!

Today was a day I had been dreading as we were to meet with the oncologist to see if I needed chemo or not. We were awaiting the results of the oncotype test. ILC is not like other breast cancers and whether you have chemo or not all depends on certain factors - size of tumor, lymph node involvement and the ultimate test they run, the oncotype test. Since my tumor was on the smaller size and no lymph node involvement, it came down to the test. Prior to my appointment, I received an email giving me the results of this test. I looked at the email knowing all I had to do was hit one button and the answer would be right there for me to see. I knew how to read the results, all my waiting could be over in just a few seconds….but I hesitated, scared knowing that once again my life could go a different direction in the click of a button.

The oncotype test is a tumor profiling test that can help determine if chemotherapy is beneficial in addition to hormone therapy in treatment for estrogen positive cancers like mine. For my age group there are two different scoring categories 0-25 and 26-100. My oncotype score is an 18. The benefit would be less then 1% and would not outweigh the risks of side effects. NO CHEMO!!! I was beyond excited and so grateful. We waited for the appointment to share the news to make sure that we were reading the results correctly and that there were not any surprise curve balls.

The next course of treatment with my oncologist, once the wound vac has been removed, is to start Tamoxifen. My body isn’t quite in menopause even though the majority of the women my age are, the three tests they use to determine that factor disagree with each other. So we will redo blook work in November and re-evaluate then if we will continue Tamoxifen or switch to an aromatase inhibitor.

It is still a little odd to me and surreal, because for me I associate breast cancer and chemo as things that always go together. However, I will take this win and celebrate this victory. After the appointment, we had a celebratory cupcake. Today marks one month since my surgery and reconstruction; except for the wound vac everything is moving along well. Now if we can just get this incision healed, we would be doing so much better!

Have a wonderful weekend
Love
Deandra


Late Night Epiphanies

Things I want to talk about or share often come at the oddest moments. I literally could be moments from dozing off and my brain is like, hey, you need to share and talk about this; or at 4 am, which is my new wake up apparently, it decides to do the same thing. I swear if there isn’t a lighted pen already invented somebody hurry up and get to it. It would be great to be able to jot down the brief words of wisdom and not wake anyone up in the process because of all the lights needed to see.

A little over two months ago, things in my life were pretty normal. Mini vacations were being planned, long vacations were being discussed. Our annual summer weekend water park trips were just getting started, which for me was something I thoroughly enjoyed. It truly was my happy place and a time to relax. I am a planner you see, I like to know in advance the events that are going to happen in my life. Typically if you ask me what I am doing the next few weekends, I can tell you. I am not, as you say, a ‘fly by the seat of my pants kind of gal’! It has been really hard these past two months of the unknown, not knowing what would happen - radiation, chemo, what meds they will prescribe since mine is hormone positive, and the waiting. The waiting is the hardest part.

Have you watched Father of the Bride 2? You know the part in the opening scene where he is talking about moving forward with life, one child married, one soon to be in college, then he states “They lowered the boom on me, it was like that old joke ‘all those who think they have made it, take one step forward, not so fast George banks”. This is a little of what the beginning of all of this felt like. You see at the beginning of the year Stephen and I made plans to pay off all of our debt so that we can do some of the things we really want to do - invest in a few rent houses, go on some of our bucket list trips, and a few other things. We also have been on a weight loss journey the past year and a half and have made remarkable strides, albeit slowly, but we prefer it that way. Right before all of this reared its ugly head, my main concern for myself was to get under 200 lbs. I had a goal of 150-175, and still do, though the number on the scale doesn’t matter near as much to me right now. Then comes May and life says, um hang on, those steps forward you took, take about 20 spaces back.

The weight loss journey we were on though set up the stage nicely for me to be able to have what is called a Diep flap reconstruction. They basically give you a tummy tuck and reconstruct new breasts from your own fat, pretty cool, right?! The surgeon removes skin, fat, and blood vessels from the abdomen and uses a microscope to connect the blood vessels in the flap to vessels in the chest. The surgeon then shapes the flap to reconstruct the breast. I had been wanting to do a tummy tuck and breast lift; however, the cost was much more than I was willing to take on as debt and we had goals - pay off our existing debt to be debt free. Guys, you need to be specific LOL. I am forever grateful for this process; however, I would in a heartbeat go back to worrying about the teetering scale of 201-203 every day, and waiting for that tummy tuck and breast fix. My new ‘boobs’ are interesting, almost like they aren’t mine and that in itself sometimes is an emotional roller coaster. My awesome daughter, who has walked this path prior to me, has tried to prepare me for some of this. You listen and you hear, but until you truly walk that path you do not know the gravity of those words. She told me, Mom, it is your decision to have nipples or not, but be aware whichever you choose, it will F*ck with you mentally. She is not wrong.

This whole process is a lot, very overwhelming at times where you just stop and think I don’t want to do this anymore. The constant pain, keeping up with your medication, making sure you are getting the right amount of protein and foods to help the healing process, the do’s and don’ts of wound care, are you drinking enough water? asking for help for things that you had no idea you would need (opening a water bottle, washing your hair, using the bathroom, getting dressed and so many other things) - I have a wonderful partner who is my partner in crime but right now has basically put his life on hold to make sure anything and everything I need is granted and made easier for me. I cannot imagine my life without him nor without his invaluable help and grace throughout this process.

So far, I have only had one surgery (phase 1). The potential for more still remains, so the surgical journey is not necessarily over. Healing after each phase is a challenge in and of itself. The doctors added a wound vac to my abdomen to help promote better healing and decrease the risk of suture separation. Still on the horizon are potential revisions to correct issues the doctors see and/or make adjustments for my personal preference (how it looks to me).

You read about so many others who have to have radiation, chemo, revision surgeries for failed reconstruction, and so much more that they do not or cannot talk about. It is hard for many to describe in clear terms the emotion impact of the disease, the surgeries, and the general hard left turn that is forced upon you when going through this type of life event. As you read this, please understand that a medical determination of “cancer free” is not the end of the story. It is a cloud of concern and a constant need for vigilance the rest of your life because of the ever present “however minute” risk of recurrence as well as the necessity for life change due to the medical supplements that become part of your every day routine. I share these thoughts and comments not to seek pity or declare the woe is me, but rather in my attempt to communicate the breadth and levity of this very real life altering event. I am trying to speak for those who cannot speak for themselves.

My Knight and Soulmate

I have always said that the relationship Goudy and I have is not the norm. And I have often told him that I wish I could clone him and pass him out to those who needed him, then the world would be such a better place. He has such a huge heart, would literally do anything for you and is loyal sometimes to a fault. He has always been my rock, my best friend and my soulmate. I could not imagine going through this journey with anyone else.

The moment we found out about the cancer, he has been my biggest cheerleader. He exudes positivity and refuses for any negativity to be spoken. He does, however, allow me to have my moments, expressing my fears and listens and allows me to be heard. He has rearranged his schedule to ensure that he is available for every appointment, MRIs, breast surgeon, plastic surgeon - all of it. He has been there every step of the way. I have always said that this is OUR journey as cancer not only affects the patient but the entire family. Yes, it is my body that is enduring the testing, the surgeries, the recovery. However, the emotional aspects are sometimes overlooked as this is a very draining journey - both physically and emotionally for EVERYONE. Every moment is consumed by making sure I am comfortable, medication schedule, caring of the drains and incisions, all of the housework (laundry which is done at least once a day if not twice depending on sheets/towels and my clothing, dishes, trash), feeding of farm animals. He literally is the chef, maid, butler and nurse every moment of every day.

I am so grateful for his support and help throughout this entire process. His job has been so very supportive as well; allowing him to rearrange his schedule to be at every appointment and make sure that my needs are met first and continue to ask how I am doing but also how he is doing.

He makes us breakfast every morning, our special concoction of coffee, my Juven (nutritional powder for wound healing - he makes two of these each night prior to bed for the next day), a protein source and my first set of meds. He has alarms for throughout the day for all the medications the doctor has prescribed and will text me if he is not here to make sure I have taken them. There are so many things that you are limited by because of this surgery, or surgeries rather. We had a bidet installed prior to surgery (best thing every by the way) because you are very limited in your reach after surgery. Need a bottle opened? You need someone to do it for you, need something down from the shelf? you need someone to do that for you as well. So many day to day ‘normal activities’ are now out of reach. The first week, he bathed me and washed my hair. He also has to dress me, help me put on my compression bra and binder that I have to wear for six weeks (this sometimes seems like an Olympic sport). We have a routine - 8 pm each evening he strips/cleans my drains, I take a shower (which now I can do by myself though he still keeps an eye on me) this takes about an hour. We then fix some tea, have a nice little slice of homemade banana bread (he is becoming quite the baker) and some hot tea and watch House Hunters International. I love routines, they make me feel safe. Though I typically fall asleep by the last show and then I get the last of my meds and off to bed we go. We have a Tempur-pedic bed which raises up and down - never knew how wonderful this really was until now. Does he complain that it is higher than normal - no, because that is not who he is at all.

This is just a glimpse in who he is and his side of this whole journey. He does not complain, he never seems put out and is always making sure my comfort comes first. When I say he is my everything, I mean it. He completes me in every way I never knew I needed.

A Day of Celebration

Yesterday was a very busy day. Coffee was made, animals were fed and we were out the door just after 8 am for our 9:30 am appointment. We live about an hour out from town (due to traffic most of the times) so we have to plan accordingly and especially for all the crazy construction right now.




Our first stop was the plastic surgeon. He was going to check the incisions, bruising, and drain output. We talked about the drains that Stephen has to clean twice a day. I joked about offering shots (that is what they look like) well okay maybe for a vampire but still. I was a little anxious as not knowing what this visit would entail because technically this is MY first ILC rodeo. They took us back into a room and asked me to disrobe from the waist up. Ha, this is quite the process. There is a shirt that has pockets to hold my drains (keeps them in a safe place), my Masthead surgical convertible bra (these things are amazing and so comfortable). The bra has two rings on each side that hold the drains. But wait….stop right there - did either of us think about bringing a lanyard to hold the drains? Nope, again first rodeo, but my loving husband asked the front desk if they had one we could borrow and problem solved. Next, there is the abdominal binder, this contraption is such a pita. The binder is to help the healing processing by adding support to your stomach and help restrict fluid buildup. I have to wear disposable panties underneath to help with the irritation on what I lovingly call my ‘Joker scar’ (because it is literally hip to hip - “why so serious” - insert Heath Ledgers Joker voice). I know it serves a great purpose, but it does not make me like it any more.

My drains have been my nemesis more so than the binder, well the left upper one to be exact. It has been quite pissed off. Not sure who offended it as we have tried to be gentle and loving with each of them. But it decided to create the most issues (more pain and nuisance than anything). Y’ALL HE TOOK THOSE DRAINS OUT! I am now only sporting two drains - one for each hip, and as long as those behave they will come out next week. I do have to keep antibiotic ointment on the breast drain incisions and a band aid for a few days - this is chump change comparatively to this past week. He said my breasts and the bruising looks good, and so does my incision area. I literally teared up and almost cried in the office - the freedom felt after those drains were removed is indescribable. I have an appointment next Tuesday for follow-up and to remove one of the hip drains (as long as they are behaving and then at the end of the week for the other). I was so elated that I almost forgot about the pathology report looming over my head.

Now we were off to see the breast surgeon and discuss the pathology report - the dreaded lymph node report. We had a little time to kill as she was still in surgery, so we went over to the hospital and had some coffee and a lemon loaf as a treat. Finally, it was time for our appointment, and off we went. Again, we were showed to our room and asked to disrobe - only this time just the shirt and bra. It literally took more time to disrobe than she was there in the office. Pathology report shows clear margins and NO LYMPH INVOLVEMENT! This is beyond wonderful news. This means no radiation (which honestly I feared more than chemo). So much comes with radiation that I am so beyond grateful to not have to travel that path.

Our next major appointment is July 10th when we meet with the oncologist. She ultimately decides the next treatment course. There is a test that will be ordered, oncotype, and this is a determination of whether or not chemo is required. Believe it or not, chemo and ILC do not always work well together. Weird, because I am sure you are like me and just think chemo and breast cancer go hand in hand. However, that is not always the case. So, now we wait and see, and during this time I will do my best to rest, as I often forget that I literally had major surgery and want to do so many things but I am quickly reminded that I cannot either by my body or my husband.

Hope you and your family have a wonderful and safe holiday!
Much Love,
Stephen & Deandra

Home Sweet Home

Surgery prayerfully went very well - all in all less than 7 hours! And for that I am extremely grateful. For me it was like a short sleep; however, for Goudy and Lauren it was a very long and exhausting day. My recovery time after surgery was a little longer as my oxygen would not come up and stay up as they would have liked. Every time I started to drift back off to sleep, it would fall under their preferred numbers. My blood pressure was not playing nicely for them either, apparently my body just did not want to cooperate. Even though both were a little on the low side, they finally released me to go up to my room and be reunited with Goudy and Lauren.

The next 24 hours was a quick lesson in how to get in and out of bed, learning how to sit in a chair and my “favorite” to walk around the nurses station. These things seem like something that should be second nature; however, when utilizing your core muscles is restricted, you have to relearn this in order to not irritate and aggravate your stitches. My nurses, however, were the absolute best, very caring and nurturing and made the stay much easier. We were able to be ourselves and joke around with them and at the same time learn all of the necessary things to help with the next few weeks of recovery.

I saw my chest for the first time at my daughter’s house and it was such a surreal moment. There are a flood of emotions that you are not prepared for as you see your body for the first time. For me, it was a little strange having cleavage, boobs in their proper places, and a flat stomach, you find yourself thinking whose body is this? And what the heck happened to my sad little sea turtle feet (inside MRI joke)

We recently upgraded our toilet and installed a nice, fancy bidet (thank you Becky, Taylor and Micah) and I cannot express enough how grateful I am for these two items. It has a heated seat (which will be wonderful come wintertime), heated water, and an air dryer function as well as few other settings. Goudy has adjusted the water pressure on it so that the equivalent to Old Faithful doesn’t come greet you unexpectedly. It has definitely been a learning process in finding the correct settings, and I can assure you there are a few little buttons that will remain unused - but I highly recommend it!

Surgical bulb drain

Goudy has been the absolute best caretaker! He has alarms to make sure I take my meds on time, making sure I am getting all of my protein and extra things for healing, and he has the cleaning and emptying of my drains down to a science. I currently have four drains, two breast and two hip drains. These have to be cleaned and emptied twice a day. They each have their own little cups to measure the daily fluid as once they reach a certain level I can have the drains removed. Our goal is to reach under 30mL for over 24 hours then the drain can be removed. My support bra has clips to hold the drains, and I have lanyard that holds them so that I can shower and not create strain on them or catch them unnecessarily. I also have what is called a Brobe that has drain pockets to hold them in place and keep them secure. It is so very soft and very comforting to wear. There are quite a few tricks you learn to keep things from pinching or getting caught on things you normally wouldn’t think twice about. I have disposable underwear that we cut out to help keep maxi pads in place to protect them from the binder I have to wear as it irritates the my abdominal scar. And so far, sleeping in the recliner has been the easiest.

Home Sweet Home

Here is to relaxing while recovering

The Final Countdown

I have been waiting for this day for weeks; however, now that it is here I would really just like to hop on a plane and fly as fast as I can in any other direction. Tomorrow is surgery day which meant today I had preop and final assessment. I went in to work like any other day and prepared the girls as best as I could for my job duties while I am out the next few weeks, turned off my light and went to the hospital to have my final pre-surgery tests.

I had a Lymphoscintigraphy which is a nuclear medicine imaging study for mapping the lymphatic system with scintigraphy. The radiotracer is injected just beneath the skin using a very small needle followed by a series of images. They tell you it feels like a bee sting. I told the girl administering the test that I had recently had a bee sting and would know whether she was lying or not. She laughed and said remember everything is bigger in Texas. When it was all said and done, I told her that it was more like a Texas wasp, not a bee, and she said she would start using that analogy for future patients. Stephen and I then went to preop for my EKG and lab work where they went over everything I needed to do prior to arrival tomorrow morning. All in all, it was quick and we were in and out in time for lunch. We went to Enchilada Ole, haven’t been? You should go - the guacamole is fresh and on point! They have locations on Camp Bowie, N Tarrant and on Forest Park.

Last Friday, Stephen and I sat down and talked about all of the things that have been weighing heavily on my mind. Some were completely rational, while others were were not; however, I really needed someone just to let me vent and voice my concerns out loud. In order for me to work through things, I need to verbalize and let my thoughts stew in the open rather than hidden away. I can honestly say that after working through all of this together, I feel less overwhelmed and more at peace.

So for tomorrow, we are claiming no lymph node involvement and for surgery to go smoothly.

Almost there!

A week from today, I will be in the middle of a life changing surgery, all because I went in for what I thought was possibly a bug bite. Some days everything feels completely normal, like nothing is different – there isn’t a foreign growth in my body. It is just a bruise that will heal on its own. My brain is certainly trying not to accept this new reality. When I went for my CTA, the tech asked me when I was diagnosed…I just looked at her blankly because in my mind I had no idea what she was talking about and then my brain snapped realizing she meant my breast cancer…. May 20th, the day our life changed forever. I told Stephen about it that evening, and he told me I was disassociating. I never even realized it until then but he is right. The first few weeks were a whirlwind – diagnostic mammogram, ultrasound, and biopsy all in one day, then breast surgeon and plastic surgery appointments, MRI, and CTA that it was easy to stay in the new norm even though it felt so surreal – like it was someone else’s life I was living. Then it all slowed down, there were no more appointments, no more phone calls or people asking me to recite my name, address and birthdate. Stephen joked and said had they asked me for my age, I would have been in trouble, and he is right, I never know how old I am because I don’t care!

So even though my mind is trying to disconnect, the rest of my body is well aware – I live in a tired state because even though I take melatonin to sleep, I don’t actually sleep. To be honest, neither of us sleep. I live in this constant state of exhaustion and most days feel like I cannot breathe. It feels like there is this huge weight on my chest making it hard to catch my breathe. Truly the only thing that helps this feeling subside is Stephen. He is my everything and has always been my person. He can literally place his hand on my arm and my whole body relaxes. He has been visiting his parents since Saturday as this seemed like the best time not knowing what the rest of the year will look like. I CANNOT wait for his plane to arrive this afternoon.

Tuesday, I will have my preop appointment (blood work and an EKG), as well as a Lymphoscintigraphy. What is that you ask? It is a special type of nuclear medicine imaging that takes pictures of the lymphatic system. It is also called lymph node mapping. It will help identify the lymph nodes and which are free from cancer.

The next few days we will be in relaxation mode as we prepare for surgery – pedicures, massages, and maybe a movie, just time spent together in preparation for my surgery next week. We will post an update next week!

Much love ,

Stephen & Deandra