Still Here

It has been a bit since I got back on here and for that I am sorry.

Living after cancer has proved to be a different type of pain than living with cancer. I wish I could say it has been sunshine and roses, but this blog has always been about the truth, so I can’t say that.

Since my last post I have been trying to figure out what normal for me and my family is. There is so much fear of another reoccurrence, anxiety that I am not doing all the “things” to prevent cancer, hyper awareness of keeping stress to a minimum, and trying to understand just much of an effect cancer had on me both physically and mentally…it has been challenging.

I am going to do my best to start posting again. Moving forward I think this blog will be mainly focused on what I am struggling with due to the side effects of cancer treatment. A main focus will be lymphedema. It is not lost on me how ironic it is that my surgeon told me he NEVER has patients that end up with lymphedema, yet here I am pumping my arm morning and night plus wearing compression sleeves day after day (needless to say he is my least favorite of all the surgeon’s I have dealt with). I also think I will show you the skin cancer that showed up on my nose that the dermatologist thinks was due to my weakened immune system and other factors.

I know, lots to look forward to in the coming days and months! As always, it is my hope that some of this might help someone else on this unfortunate journey of breast cancer.

Alicia BiedermannComment
Spoke To Soon

After that last post I did plan to make myself get on this and continue writing….then my friend Nancy found out she had a reoccurrence. For the remainder of November and most of December I spent as much time as I could at her bedside. For those of you that have had to watch someone die from cancer, you know, there are only two ways a person goes. First, they are lucky and upon news that it is stage IV pass quickly, if not immediately. Second, the cancer eats away at their body leaving a path of pain and destruction in its path. My friend went the second way.

It is sickening to me to say that I have had to deal with this so often in the past three years. With Esther’s passing it was easier for me than Nancy. Esther’s cancer didn’t travel to her brain so she knew who she was, who you were and could hold a conversation almost up until the end. The cancer also didn’t seem to attack Esther’s body so stealthy and with as much accuracy as Nancy’s did. When I said my final goodbye to Esther, she looked like Esther. Her cheeks were still pump and rosy, her color was as it had always been. When Nancy had told me it was back and there wasn’t much they could do, this was what I hoped Nancy would get on her path to heaven. I was wrong.

Nancy and I had become friendly years before either of our diagnoses. Her grandson and my son were the best of buds. Nancy and her husband did much of the day to day stuff for her grandkids so we often sat and chatted at practices and games. Prior to Covid we spent almost every weekend in the summer with one another at swim meets. Towards the end of 2017 Nancy told me about her breast cancer diagnosis, and a few months later I would have that same conversation with her about myself.

There is a special bond that forms amongst cancer patients, and for Nancy and me, it brought us closer together. We were not the same age, our cancers were vastly different, but we seemed to be in the same spot in life. Her raising her young grandboys and me raising my own kids. For me, she became a dear “mom friend” that merged into something more treasured. She made you find a way to smile, all the time, and never let anything get in her way . To put it simply, I loved her.

So each day I drove the hour or so to her home, and prayed that the cancer would stop its progression. As her body got skinnier, and skinner, and the tumors grew pressing on her brain and spinal cord, I begged for it to stop. I knew it wouldn’t. You feel helpless as you watch the decline becoming excruciatingly more painful each day. There was nothing I could do but sit next to her hospital bed in the center of her home. Each day I brought pictures and stories of the antics of her grandson and my son. On good days she would hold your hand and smile, but more often, she was unable to open her eyes or speak. The last thing she said to me was that she just wanted to go home because she hurt so bad. It would take three more weeks after that for her to finally be called home a few days shy of Christmas.

When I received word that Esther had passed I was mad. There was a feeling of irritation that this disease had taken her, a woman so full of life and love. When Nancy passed all I could think was, finally. Finally, the disease would stop its deadly assault. Finally, the pain would be removed. Finally, she got to go home and be at peace. I was grief stricken but so overjoyed that Nancy was done with her fight.

It isn’t about me but when you lose another friend to cancer it begs to be asked, “why am I still here?” Scott will say because I am young and healthy. But my friend’s wife was younger than me and healthy, she didn’t make it. I am left with this feeling that God must have something he needs me to do, but I don’t know what that is. My heart wants me to believe it is to be a mother and wife because that is what I most want to stay on this Earth for. But most women that die from this disease are both as well.

I guess I just wanted anyone reading this to know that surviving cancer is as hard as having it. You are never fully alleviated from the fear that comes with the question, “is it going to kill me?” because if, or when, it doesn’t you are left wondering why it didn’t, and when it might.

Alicia BiedermannComment
Busted by the Hubs

Each night since the pandemic we have been able to sit down and eat dinner together as a family. For me the pandemic has been a huge blessing because I fully understand how precious time together is. We have used this time to really get to know each other. Sounds silly but it is true. One of the questions the kids asked was who was your last boyfriend or girlfriend before mom/dad…why they wanted to know this baffles me. But as the weeks progressed of family dinners we have learned all kinds of things about each other. It has become something all of us look forward to and as the kids have been able to get back in the pool recently, something we have all really missed.

Scott asked me last night how the blog was going. I was a little surprised at the question as we don’t discuss this blog often. He told me he doesn’t want to read the blog, maybe ever. To him it is like scratching an open wound, reliving it is too painful. That being said he is my biggest supporter and one of the reasons I even did this in the first place. So I explained that I actually hadn’t posted anything since April until just the other day. Color me surprised when he get upset. It is a little funny how frustrated he was that I had not been posting, I mean he doesn’t even read it! But Scott says I have an obligation to continue writing because cancer isn’t over after treatment….and that is why I married this man.

For me the hardest part about navigating life after cancer surgeries is the negative effects there are on your muscles, lymph system, and mobility. Overall, I have done a pretty stellar job (if I say so myself) of getting myself back to normal-ish. I successfully got rid of all my cording, which freaking sucked. I also have almost full range of motion back if I stretch multiple times a day. That is right, every day, more than once. But one area that I can’t seem to get a handle on is the swelling in my arm.

I know I have written about this briefly in the past but dude, lymphedema SUCKS!!! My error is not taking pictures of my arm at its biggest. When my brother Dave is around I will take a picture of his bicep next mine because at my arms largest it was bigger than his. I have refused to take any pictures that show my left arm. Is this completely insane? YES! But it makes me feel like I am this massive blob. No amount of working out can get definition into an arm that is swollen with lymph fluid. Not only does it just look unsightly, it hurts. My arm aches constantly. This aching is important because for the majority of my chest and left side of my upper body I am totally numb.

There are numerous professionals that can help with lymphedema. Full disclosure, I am sure that there are some fabulous people out there in this field. I have not met them. The standard line I get is that my arm is “bigger” than the other because I do to much, I workout to hard, or too often. My favorite explanation was that I should be less active, maybe just stick to a leisurely walk instead of strenuous exercise. NEWS FLASH! Every research article I have read about breast cancer prevention or breast cancer reoccurrence shows, without any doubt, that exercise is one of the most important components of one, not getting cancer, and two, not having a reoccurrence. The fact that professional’s are suggesting a woman that not only got breast cancer (with no family history or genetic markers) but had a reoccurrence should not workout is horrifying.

In my quest to find ladies that might be working out beyond walking I started asking questions in a few of my Facebook groups. Enter Courtney. Thank the heavens for Courtney. Courtney is a freaking body builder and cancer survivor in one of these groups and she got me hooked up with a nonprofit called Barbells for boobs, here is the link if you want to check them out, https://www.barbellsforboobs.org/ . Basically these ladies created what I had talked to my friend Miranda about trying to create back in 2017 when I got my first diagnosis. If you have been on the blog with me through this all, I have accomplished what feels like nothing so kudos that this got created. It is needed desperately in the breast cancer community.

So what is this organization, right? In a nutshell they want to help women be active after a breast cancer diagnosis. The founder and many in the group are avid crossfiters. I am not but don’t feel like the group discriminates. To me movement is movement so you do you. They also offer resources for screening, doctors visits, and more than I am sure I even know about. It has only been about two weeks since I found them and already the resources available have been lift changing. My left arm is the smallest I have ever been able to reduce it. Much of this I credit to the workshops and zooms offered with professionals through Barbells for Boobs. It is really a great organization and I recommend you check them out!

Alicia BiedermannComment
The Impossibility of Moving On

I know it has been months since I have written and for that I am sorry. The blog has little interaction so it is easy for me to rationalize that no one is reading it, therefor it is fine to step away. However, it would seem that is not the case since I have received quite a few emails asking if I am okay. For those of you that reached out, thank you, but more importantly I appreciate hearing that this blog has helped people navigate their own diagnosis or that of a loved one.

One of the biggest reasons I have been quiet is that I have had a hard time navigating life after cancer. I had hoped that once I got a clean scan showing no evidence of disease that my life would go back to normal (normal defined as life before the first cancer diagnosis). Rationally I know that my life before cancer is something that I will never get back. I am not that person any longer and those that have stuck by me through all of this are changed too. There is a spontaneity that I can’t seem to recapture. I feel like I have lost my innocence.

Getting cancer miraculously qualifies you to join a select group of people. No one wants to be in the group, but once there, you never want to leave it because the women you meet are amazing. Since April I have lost two friends from this horrific disease and had two others have reoccurrences that are stage IV. Each time has set me back a bit in trying to move forward. I question, why them and not me, or why them and not someone else? There is no answer to this question, I am not sure there will ever be. This is something that we, as people living after cancer, have to get strong enough to handle. Each time I think it is going to be easier, less traumatizing, but isn’t. As I said before, the innocence is lost, I now know that this can happen to any one of us, at any time. That knowledge is hard to accept and live with.

There is also a pretty significant election taking place in USA. For someone that is pretty unpolitical (I hate them, so much) I have suddenly become very passionate about them. Obamacare, or the Affordable Care Act, allows me to not be turned away from my health insurance. Right now our President is trying to remove this. I watch a lot of news because of this one issue. No matter which party you stand with the bottom line is that this will be voted on by the Supreme Court in a matter of weeks. That means I could possibly be denied life saving medication. This also means that those GoFund me accounts, are going to be jamming our newsfeeds because us cancer patients are not going to be able to afford the medicine we need. More than anything this is big reason why I have not posted. I am scared for my life about this one issue. My husband, God bless him, swears that no politician would ever allow this to happen because there are millions of American’s that have pre-existing conditions, but I seriously can’t sleep at night over this. I really, really hope that my husband is right.

I will end this with a short update on myself. It has taken 5 scans (PET and CT) to finally get a confirmed “no evidence of disease” result. I know I should be reassured by this but my doctor’s do not think it is a good idea to remove my port yet. That makes me hesitant to go crazy with excitement. My new philosophy is to just “roll with it”. If it comes back, okay, we will deal with it. If I get another clean scan, okay we will just keep moving forward. I am trying to be realistic. There is almost no research on breast cancer cases that show up a third time….that is depressing because I know why there is not research available….I say when people ask me that I am doing well and grateful to be alive for another 5 months, 5 years, or hopefully 50 years. But come on peeps, I am holding out for another 50!!

Oh one other fun medical development is that I have a hernia. I thought this was cancer in my stomach because it was painful (fun side effect of cancer is that anything in your body that feels “off” you immediately believe is cancer). My breast surgeon is the best, I love her, and she is going to do the surgery for me to fix it next week. Well after I get back my COVID results. So if I take a bit to get back on here I am just recovering from that.

Alicia BiedermannComment
Having Faith

This week I will be having what we think will be my last chemotherapy treatment... again.

31 infusions.

It renders me speechless.

31 doses of some of the strongest medicines available for my type of cancer. The medicine is working to save my life but I wonder at what cost? How is living with the side effects for the remainder of it going to be? I question if it will have been strong enough to beat it this time? How strong will I need to be to endure going through this again if It comes back? The questions are limitless and anxiety producing.

But here I am, once again, standing in front of the finish line. The weight of both fear and hope is suffocating.

Since the second diagnosis I have had three PET scans. I have not written about them on here because I do not like to talk about results until they are concrete and 100% certain. When you are as open about things as I have been it gives people the misconception that I want to talk about cancer all the time….I don’t. I really just want to forget that this is my life.

My PET scans have revealed that I have an area of concern in one of my lungs. So what does that mean? Hopefully nothing but the area is not going away nor has it gotten smaller over the past six months that we have been monitoring it. So next step is to do a CT scan. The CT will allow the doctor’s to determine if I have scar tissue (what I am hoping for), organizing pneumonia (some what common in breast cancer patients), or tumors. The scan was originally planned for either this week or the following however with COVID19 I have not heard when this is going to take place now.

With where the world is at my level of unease is reaching epic levels. I don’t like to be in panic mode in real life. Instead I am more like the duck in the water; calm on the surface but paddling like a madman underneath. For me music soothes my mind and helps remind me to shift my focus. For the past few days I have been listening to one of my all time favorite songs “Have a Little Faith In Me” by John Hiatt. Every aspect of the song from the piano down to the gravel in his voice that is emphasized by the words. It is the song I hear at this moment in time. The lyrics are below:

When the road gets dark
And you can no longer see
Just let my love throw a spark
And have a little faith in me

And when the tears you cry
Are all you can believe
Just give these loving arms a try
And have a little faith in me

When your secret heart
Cannot speak so easily
Come here darlin'
From a whisper start
To have a little faith in me

And when your back's against the wall
Just turn around and you will see
I will catch, I will catch your fall baby
Just have a little faith in me

You can decide how you want to internalize this song. It could be your relationship with our Lord and Savior and his ever encompassing love. Perhaps it reminds you of a significant other that never allows you to give up. Does it remind you of the unconditional love a parent has for their child? No matter what is going on in your life right now I am sure this song makes you think of a person that was there for you when you needed them.

I know that this is going to be an emotional week for me. It will test my faith in God, in medicine, and in my doctors, but most of all, in myself. No matter what the future holds I do have faith that I can endure it. Below I put a link to youtube so you can enjoy the song yourself.

Alicia BiedermannComment
Two Year Cancerversary

Throughout my life there have been moments that are forever etched into my mind. Most of these memories I never want to forget because each is encased in layer, upon layer, of love. The day I met my husband…I can still remember the exact outfit he was wearing, the moment we said “I do” and the rightness of knowing we were meant for each other, and when each of our three children were born and placed upon my breast. Moments are what weave the tapestry of our lives together.

As I have been reminded of, time and time again, is that we are not in control of our life. No matter how hard we try to mitigate anything negative into our lives it always finds a way. With each joyous memory that is imprinted on my brain the harsh moments are tattooed as well. When the doctor first told me he was 99% sure it was cancer, how Scott looked at me after I told him, my children’s faces filled with fear and the inability to speak upon hearing the news, the nurse navigator telling me I would do great because I was young and healthy, the excruciating pain after surgeries, the sickness after chemo…hearing the cancer was back. These moments, these I wish I could forget. Too many times in the dark of night they replay in my head taking over like the cancer I am fighting.

Today, April 6th, is the day I found out I had cancer two years ago My younger brother and his wife were upstairs in Labor and Delivery getting ready to bring my nephew into the world. I remember walking up and seeing them before I went down to my appointment. As the doctor started explaining the severity of what we had found my phone was vibrating the announcement of my brother’s son birth. It was very surreal. In that second I was experiencing the worst moment of my life. I sat on the table in a paper gown trying to hold not only it together, but myself. One floor above me my brother and sister-in-law were experiencing one of the happiest moments of their lives. A day that brings my brother and his wife such joy is a constant reminder to me of the day that my life fell apart.

Some thrivers and survivors celebrate their cancerversary., sort of an F you to cancer. I am not there yet…I don’t know if I ever will be. For me this is not a happy day. Today is a reminder of the day that my life transformed into something unimaginable. It is the day that I embarked on a journey into the unknown that is laden with minefields, potholes and unbearable pain. No matter how many times a day I remind myself to find something positive, today isn’t the day for that…at least not yet.

Welcome To Our World

Life as we know it on Earth has drastically changed over the past weeks. For many of us we have been asked by the government to stay inside our homes, to keep away from others, and to practice good hygiene. Something that once seemed to only exist inside a movie created by Hollywood has become our every day lives. Most of us will feel very restricted but for those living with cancer or some other chronic disease it is a way of life, to protect our life. It is a mystery to many that do not have cancer what living with cancer is like. With all the reading, and my own writing, that I have done I have yet to find something that has had the ability to capture a realistic example of what it is like to live with cancer…until now. The worldwide pandemic of COVID-19 emulates what we cancer patients feel on a day to day basis. So to those waking up and coming to grip with a new reality, a reality that they couldn’t have imagined until this day, welcome to our world. It might be a new world for many but most of us have found a way to readjust the lens and focus on the joy that comes with being alive. I hope that this post might help a few recapture the delight there is in every day life.

The first emotion when you receive a cancer diagnosis is fear. It rips through your body wrapping tightly around your heart and pulling your mind into the darkest depths of your soul. It latches onto the one question that no one has the answer to, am I going to die from this? As more and more people are getting sick with COVID-19 many healthy people are also asking this question. So how do you deal with it? You focus on all the things you can do to keep your body and mind strong to fight off the illness. Although cancer and a virus are different the way we can deal with fear is not. Like the song in Frozen 2, do the next right thing, and keep doing that. What does that mean? Make a list of what you can control. For me that is my diet, my level of exercise, etc.

One of the first things I did when I started chemotherapy was self isolate. Jokingly I say that the world has finally started doing what I have been practicing for over two years. One great thing for me is I have already dealt with being alone, losing friends, and ultimately just feeling lonely. But you know what? I have found out that I am fantastic company! My focus is so far from what others think about me and refocused on what truly matters in life: our families, ourselves, our faith, and what we do to benefit society (work, volunteering, etc.). Right now the world is pretty blessed to be asked to shelter in place with those we love.

I think the hardest area of life to come to terms with is the feeling of losing control. We are being told where we can go, what we can do, what work is essential, or not. In addition to our daily lives being uprooted we are all trying to not get the virus. I don’t know about you but it feels like the bricks just keep getting added onto my back. This is a unbelievable time to be living in, one that the world has never seen before. With all of the answers that are unknown, for me the fall back is my faith to help me through this. I am not a churchgoer, but I have a very strong believe God. It is at times like this where I think we are reminded that Faith is not something we see but that we feel. Find whatever in your lives gives you hope and comfort. Whatever that might be will help you.

This blog post has been in the making for almost two weeks. The delay in actually getting it finished lays in two areas. First, like most of you I am trying to work from home while homeschooling my kids and listening to my husband on his tenth zoom call of the day. It is a lot to get smoothed out! Second, the day of my last chemo we loaded into the car and headed up to Oregon to pick up a new puppy. My husband has felt like I am getting too depressed as I continue on the cancer journey. I will readily admit I did not think I was depressed. However, now that we have this pup I can say that I was no where near as happy as I have been these past few weeks. That is saying something since most are feeling the opposite these days.

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I hope that those of this, cancer patients or not, are all doing what we can to help each other. Please wash your hands, stay away from each other, and think beyond yourself. It could save a life and all of our lives are precious.

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Alicia BiedermannComment
Lymphedema

One side effect I have continually prayed would leave me alone was lymphedema. Lymphedema is when your lymph fluid backs up in one location of your body. This causes swelling in that area. Most often the people that get this are those that have undergone surgery for cancer, specifically breast cancer. Since I did not have this side effect after the first round of cancer I thought (haha on me) it was going to skip me. I was wrong.

Over the past few weeks my left arm has continued to feel odd. It is hard to say exactly why it felt odd, even how it felt odd, it just felt different. In a panic I searched up and down the left side of my body thinking it could be a new tumor. I found nothing. To be safe I called the doctor and they suggested I see the plastic surgeon to have a foob check.

My appointment with plastics could not have gone better. He had not seen me since he signed off on the exchange surgery from expanders to implants back in November of 2019….a lot has happened to me since then…new cancer diagnosis, more surgery, radiation, and a new chemotherapy drug. He is the best and told me that after we had run into each other in the hospital (as I was getting ready for my full lymph node dissection) he had been watching my chart to see what they had lined up next for me. The dude had been in surgery for 9 hours and remembered that. I love him. Really my favorite doctor I have worked with throughout this entire thing.

Most women after undergoing radiation with an implant end up with disfigured foobs. Google it and you will see some pretty intense images of what can happen. Specifically the radiated breast becomes higher, significantly tighter making it appear smaller than the other side foob that did not receive radiation, and harder. In very simple terms this happens because the surrounding healthy tissue becomes hardened scar tissue. The medical terms for this, capsular contraction is pretty common and we get warned about it prior to receiving radiation. But my foobs and body held up like a champ. So much so that my doctor kept saying he was astonished at how amazing my body looked because it didn’t appear as if I had radiation aside from the discolored skin that skill marks my body. Point one Alicia, Cancer zero.

The next doctor I was off to see in a quest to determine what was up was the physical therapist. This is who finally explained that I was getting lymphedema. You would think it is easy to determine but at this time my arm was not swollen, just feeling odd. However in a matter of weeks it did start to get more swollen. I love you all and I am trying to be honest and show you what cancer does to you, but this, this is not a part I wanted to document and have to look back on. So, no picture…maybe another time.

For the past few weeks I have been religiously doing my stretches, working out every single day, doing a self lymphatic drainage massage and wearing my sweet compression sleeves and gloves. I look completely crazy. But it seems to be working. My cancer side is still not back to normal but unless you really stare at my arms you wouldn’t notice immediately…well today that is.

This is the link to my favorite massage youtube video. For me, it was the only one I did that made a visible and physical difference. The pressure and pain in my arm decreased after doing this for three days straight. I now do this every single day after working out and stretching.

https://www.youtube.com/watch?v=Up_sIKnZ-_g

Try it out if you are experiencing any swelling.

No Joking Matter

After getting pneumonia following that last round of chemo I have been taking no chances since getting my 10th infusion of TDM1. That means we have reached a total of 27 rounds of chemotherapy I have received….how insane is that!? Typing that actually makes me feel a little sick.

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Scotty was with me for round 10. I have mixed emotions about all the nurses knowing who we are. For one it means we are there too often. But then there is a small level of comfort that we aren’t just another poke. I don’t know the halls of the infusion center are a double edge sword. All the people I have met are dead with the exception of one. I am less talkative to the people I sit by as it hurts my heart and messes with my head as to why I continue to be the one that goes on.

I know I am constantly saying how lucky I am to have Scott at my side but it is so much more than that. He is so hardworking and dedicated, to his job, to his children, and to me. A day does not go by that I don’t thank the Lord that he picked him for me. My gratitude will be eternal that Scott is my partner in this life.

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My hair is coming in with an abundance of curls. In fact once my brother sends me it I will post a picture and you all can decide if you can tell which is my hair and which is his labradoodle’s…I’ll just let you know I guessed wrong.

All things considered I am doing really well. The picture above I wanted to post for one reason. I am looking more “normal”. In the realm of cancer people think that once you start to look better, you start to feel better. If that is true I missed the memo. Those that know me I am sure can look above and see how tired I look. We are always more critical of ourselves but seeing me in the mirror still gives me a jolt. I look so incredibly different.

There is a new level of nervousness that has permeated my typical levelheadedness after getting sick. One round of pneumonia was enough to make me keep a stash of these medical masks in my purse at all time. Per the nurses recommendations I have been wearing these anytime I leave my house since the last round of chemo.

You all know I am trying to be present at everything for my kids this time. Since making that decision they have decided to take on more sports. That picture is from me at the girls basketball game. I also wear these at Brody’s games too. People are more weary of seeing me with this mask on than seeing me when my head was bald and my chest had been flattened. It doesn’t help that the fear of the corona virus is a very real thing right now, but still, it is just another level of compassion I have for people that try to live while dealing with a chronic disease.

My kids are at an age where I am sure it is embarrassing to have a mom with an enormous afro and a medical mask attending their activities. I remember rolling my eyes at my own mother doing something or wearing something I thought was embarrassing when I was younger. But these kids of mine could care less. All of us, my family, are learning that image and what others think does not matter. What is most important, what has always been the most important, is that we are together and supportive. I think it is one more item to add to the list of things cancer has taught us. Perhaps I need to write a blog that actually lists all of these items. It would be good for me to look at and be reminded that had we (my kids, Scott, and myself) not had cancer we might not have learned these lessons as fast or as meaningfully.

Alicia BiedermannComment
Where Have You Been!?

Well it finally happened, after almost two years undergoing chemotherapy I got sick. Over the past month I have been dealing with pneumonia and a pretty nasty sinus infection. Had I got this pre-cancer I probably would have bounced back in a week or less, but my body is a dumpster fire inside and I am still trying to get over all of it.

I received round 7, marking half way on this new treatment, with my friend Miranda. We have been friends since the summer before our 6th grade school year. She drove up from San Francisco to be with me. For those of us going through treatment for cancer it is rare for friends to stick around that aren’t in the same situation. To say I am grateful for her friendship is a huge understatement. Miranda has been my best friend for over three decades. I love her to the moon and back.

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Round 8 I got to have Scotty B back at my side. I think I was starting to get sick at this point. Lordy cancer treatment can make you tired! Typically about 4 days before my next infusion I am a bundle of energy and hunger. I was not before this one and spent a lot of time “resting” on the couch…

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Then last Friday I had my 9th infusion. I was lucky that my infusion schedule fell between Christmas and New Years. This gave me the allusion that I would be healthy to enjoy the holiday with my family. I did enjoy the holiday but not with the energy and excitement I had hoped because during this time is when I got really sick.

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I had to wear that sweet mask so I didn’t infect any other patients. Up to this point we thought it was just a bronchial infection but found out the following day it was pneumonia. I wouldn’t say I am averse to hospitals but given the option I would rather be at home. Up to this point I have yet to even do an overnight stay with any of my surgeries. Could be I am just hard headed but I think for those of us with cancer the hospital is a place we would prefer not to be. I feel like I am sicker when I am there. Thankfully I got a strong enough antibiotic to stay away from there. I’m still not totally back to 100% but I feel a 1,000 times better now.

Alicia BiedermannComment
Keeping My Chin Up

I haven’t written in quite some time. Truthfully I didn’t want to get on here and put something down that I would later regret. Life has seemed to unravel after the revelation that my kids were hurting so much more than I knew. You can read about that in the blog post, Why We Keep Things Hidden, but I guess that was just the beginning.

First, I found out that someone I had considered a dear friend had said some pretty horrible things about me on social media. It doesn’t matter what or who. What matters is how I dealt with it since that is the only thing I have control of. I know that words have meanings, and I realize how powerful words can be. I also understand that we, individually, apply different meanings to words and concepts. This is in fact why there is such a constant breakdown in communication. Add in social media to the mix and people think they can do and say anything now. Social media, although powerful and inspiring, can lead to so many misconceptions of what our lives actually are. All of this was rolling around in my head and made me question if I was a bad friend and person? Having cancer has made me realize that I have to prioritize my time and who it is spent with. Outside of my family I have minimal contact with people. What energy is not used up on Scott, the kids, or my parents and siblings families is used up trying to keep up with my full time job. When I am lucky enough to see someone outside of my family it is typically purely by chance. If I post a picture of myself with people when I see them it is because, for me, I am filled with joy at seeing someone I have not seen in some time. I realized that I am not a great a friend but that I also have very few really great friends in return. Sadly the days are gone where I might try to meet up with people, invite people over to my home, or even drop by unexpectedly to sit and drink coffee. Also missing are the days where I might enjoy texting or calling someone just to talk. My life as it is is exhausting.

There is a rather intense frustration at having to watch everyone live their lives as my own continues to unravel into something further and further from what I used to know. Having said that I don’t spend much time on social media these days. The holidays are my favorite times. I look forward to Halloween, Thanksgiving, and Christmas all year but these past two years they have made my heart so heavy. Instead of looking forward to the magic and wonder of the holidays I am filled with trepidation that this could be the last time I get to sit around a christmas tree with family. Logging on to see everyone happy and carefree or complaining about something so minute, honestly, it hurts my heart.

The next thing that seemed to go south was a doctor appointment. I had a check up with my surgeon whom I see every six months. At the appointment she found a lymph node on my non-cancer side that was enlarged. Typically she would have waited another six months to see if it had changed but because of my history she wanted me to have an ultrasound done right away, this way if it needed to be biopsied we could get it done quickly. It took over a week to get an appointment for the ultrasound and the wait during that week was pretty terrible. Scott has had to travel the past month or so for work and he was out of town when I had the appointment that the lump was found at. I didn’t tell anyone, only him, and over the phone. I just felt paralyzed. Although research confirms that it is rare for cancer to travel that way, everything about my cancer has defied the norms. In my head I know that this is how it will always be moving forward. Every lump or bump felt or found will have to be double checked. With each discovery I will hunker down in fear that this might be “the one” that could end it all. It makes it difficult to breath. It makes the longing to live even more intense and the wish that this was not my life a drumbeat in my head.

For me I deal better with things alone first. I have to get a grasp on what is happening before I let it go out into the universe. So I kept all of this to myself and asked Scott to do the same. The ultrasound came back okay which is good news. They want to watch it and see if anything changes but for now it looks like it is not cancerous. This news should have alleviated some of the churning in my stomach but it didn’t. If anything it is conformation that I am not as strong as I need to be to continue moving forward.

The last thing that happened started when Scott, in an effort to get my mind of my life, suggested we have a Hallmark movie watching marathon. We watch them as a family and it is one of my favorite things to do together. I was very disappointed when each movie we turned on had killed the mother off. After the third movie had a mother that was dead I had to leave the room. Does anyone even think about this when creating movies? Disney even kills the mother off more than the dad. For someone like me it is an arrow to the heart and an unconscious whisper in my head that I will leave my family just like in the movie.

This is not suppose to be a depressing blog but one that, hopefully, is inspiring to others. The past few posts I feel like I have been unable to provide that. I also promised that this blog would always be honest, even when that honesty is ugly and painful.

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It is because of the cumulation of these things that I have had to do some soul searching these past few months. Since I haven’t discussed these with others it has to be divine intervention that my brother John and his wife JoAnn sent me this picture the other day. I hung it outside my closet door so I that I can see it each morning when I get dressed and each night before I go to bed. The artist said this about the painting, “…many unseen forces are interested in you, love you, and work to influence the matters for your profound benefit.” They sent this to me with a text that said, “Grandpa, grandma, and many others. We are one of those “unseen forces” too. Praying for you everyday. And trying to support you how we can. You’ve got legions of people here and in the next life who love you and care for you, all fighting with you.” I guess I needed to hear that I am never alone, even though sometimes it feels that way.

Yesterday as I had started writing this blog I was interrupted by a phone call from a friend, that is really more family, over 3,000 miles away to tell me that she loved me, that she missed me, and that she is always praying for me. We talked about a lot of what is in this blog and it gave me goosebumps that she felt the need to call me at that moment. God works in mysterious ways and I know he knew I needed to hear from her and look again at the picture my family had sent me. I didn’t post this yesterday because I needed to find some sort of “happy” note to end on. Yesterday I couldn’t find it. Today I did. We are never alone. No matter how much we feel like we are, there are people all over the world and waiting for us in the heavens that want us to be relieved of the pain and sorrow that this Earthly life brings, that deep down we only want the best for each other. I think that is what I am holding tight to right now.

Alicia BiedermannComment
Kids Barbie

It has been almost two years since I started receiving different types of chemotherapy. As side effects come and go one has been constant; chemo brain. I find myself forgetting what I am talking about in mid-sentence pretty often these days but what is worse is when I can’t remember even doing something. This was the case when I opened a delivery from FedEx on Sunday.

First we have to back up to when I was getting ready to start my first round of chemo. I was very nervous about losing my hair and the effect it would have on my kids. After hours of research and reaching out to women that had already gone through this with young kids, I had hoped to alleviate some of the fear for my kids. One of the things I had done, and don’t remember doing, was signing up to get a Barbie doll for my kids that is specifically made for children with cancer or children who have parents that are going through treatment for cancer. The dolls are not available to be purchased and I cannot remember where I even signed up to request them for my kids. They never showed up and I forgot all about it. Then on Sunday a package was delivered and inside were the dolls.

My hair has long since fallen out and been replaced with a mass of chemo curls. No matter how different my hair may be I am very grateful to have hair. It is a sign (to me) that the newer more targeted chemotherapy treatments are killing the cancer cells in my body and leaving the healthy ones. Only time will tell if this is true, but mentally, it helps me. More important is what having hair means to my kids. They have told me that not having my hair scared them and is the “best part” about the new treatment I am receiving. Emery especially needs to touch my hair. I think by feeling it she gets reassurance that I’m here and alive. I understand that to them it is a sign that I am normal, that I look like the other mothers from school or sports. So Scott and I gave the kids the dolls and told them we were sorry they arrived after my hair had fallen out and grown back but they didn’t care.

The girls are always telling stories and making up imaginary games where someone continually has cancer. They have cut dolls hair, bought dolls with buzz cuts, and even shaved one of their dolls just so it looked like me. It is emotional for me to see them play and hear how big a part cancer is in their world, both in reality and imaginative. My childhood games never had someone that was battling this disease…it adds another paper cut wound to my heart.

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These dolls are such a small thing but they brought huge smiles to my three babies.

Chemo TDM1 Round 6
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This is slowly becoming our version of a “date night”. Is it what I would pick to be doing with this guy? No, not even close, but at this point I will take any extra one on one time with Scotty that I can get.

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My parents got me so many new breast cancer outfits that I am still rocking them past October. Not to be outdone my kids gave me a breast cancer bracelet from their favorite company, puravida. I was wrapped in pink from head to toe this round.

Since it was the day after Halloween the hospital still had out all their pumpkins for a contest they were holding. As I was checking in this table was set up down the hall and all the pumpkins were for breast cancer awareness.



Why We Keep Things Hidden

I am a firm believer that our attitude dictates how our lives are going to be. If we exude positivity then positive things will find their way to us. Am I always upbeat and happy? No, but I feel it is important that my kids see me living and trying to find the beauty in the moment. My hope is that they recognize it is a choice that has to be made. It might be hard to keep on smiling, but it is worth it, even beneficial. But it is also necessary to voice your concerns and fears along the way. It seems I might have kept too many of my own concerns to myself.

Recently I found out that one of my own children had been burying their emotions regarding my sickness. This is not healthy and the emotions that have been repressed are starting to manifest themselves in disruptive ways. It is hard to find out this is happening, but harder because I never noticed the fear that was residing inside my baby. The saying, “smile through the pain” had been adopted by them as, “smile through the fear.”

It took multiple sit down talks to get the answer as to why things were happening that should not have been. What we discovered was they didn’t want to say anything to upset me. The past month we have been doing normal stuff we did before cancer. We went to Reno for the weekend with my parents, attended a big event for my grandfather, and took the kids to Disneyland. It was exhausting but great.

I told my family after the second diagnosis that we were not going to put our lives on hold anymore. Cancer had already taken a year from us. There is no getting back missed school events, sporting events, holiday parties, and more. If this is going to be it, then damn it, I wanted, no needed, to live life! I thought it would be better for the kids to see me there, present, participating in their lives. What I found out is that me being there was creating mass anxiety inside my children. The more I attempted to be present in day to day events, the more concerned my kids were becoming. In my mind I was living, not allowing cancer to steal the most precious gift from me anymore, time with my family. However in my children’s minds it was as if I was trying to fit in everything I could before I died. Listening as your child tells you that they feel like they are watching you slowly die…well it is one of the hardest things to hear. I think it was more painful than hearing the diagnosis for the second time.

My intentions were to help my children, instead they were doing the opposite. Our open communication about all things cancer had left them thinking Scott and I were still shielding them from the really bad stuff. We told them exactly what we told everyone else, even what is on this blog, but they believed we were not being completely honest with them.

There is no guidebook on navigating this journey. All the research I have done suggests I am doing everything “right”. But is there anything that is right with cancer? I imagine how I would have handled being told my own mother had cancer when I was 8, 9, or 10. Just typing that makes me sick to my stomach. It is unimaginable and horrifying. It is the one thing I wish that I could eliminate from this entire situation, and something I have no control over.

Yesterday I sat and talked with my kids. I was more honest than I have ever been. I shared that there are days I have to go sit in my closet while tears pour down my face and pray to have the strength to endure the treatments. I told them that sometimes I cry in the shower because I am scared, beyond measure, that I might not get to be here to watch them grow up, graduate, or get married. Then I explained that not being a part of their lives felt like I was slowly dying and that was no life at all.

The greatest joy I have ever experienced was the day I married Scott and each day we welcomed a new baby into our family. That joy was then felt each time I watched them achieve a new accomplishment or goal. I didn’t want to miss anymore of those moments because there are no guarantees. There were tears from all of us and a few questions that they wanted to ask. Was it helpful? I don’t know. I pray that it was. I pray that the Lord is going to answer my prayers and help my three babies endure whatever lies ahead for me.

This has been a tough week for me. If you are reading this I just ask that you be kind. I beg you to remember that all of us are going through something. My trials are not harder than yours, they are just different. So many of us hurt inside without ever expressing the pain that we hold tight. I am going to try to be better about expressing my own feelings. I am not fine, though I often say I am, but I desperately want to be.

Chemo TDM1 Round 5

My brother John came to visit from Texas last week during my last round of TDM1 so my mom and him joined me for my infusion.

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It was fun to have him and my mom there with me. The time seems to go by faster with company.

I also wore these pretty sweet leggings my mom found that had my name on them for breast cancer awareness month.

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Pretty crazy is that my name was on the knee and on the opposite side was my sister, Alexa’s name!

Alicia BiedermannComment
New Sensation

At each surgery my doctors have stressed that I could lose feeling in the area that was being cut into. Some times the loss of feeling is permanent, other times it is might be only a few weeks. For me I have very little feeling in my chest, almost no feeling underneath my left arm in the triceps area, and no feeling in my left armpit.

Imagine my surprise when this morning,as I was showering, I felt this funky pressure as I attempted to shave my armpit. Not feeling anything in that area for months then suddenly having a tangible sensation, well it scared the crap out of me. I jumped out of the shower to make sure I hadn’t cut my armpit. Everything was fine, which confused me even more. For the next few minutes I just stood, staring in the mirror, poking my armpit. I could sort of feel the poke!

When you receive a Novocaine shot from the dentist it numbs that area, however you can still feel “something” as they poke around your mouth. That is how my armpit feels. It is the weirdest sensation! I can’t fully feel in my armpit but I do feel pressure in that area. This new sensation is super odd. It is also a bit exciting and gives me hope that one day I may gain feeling in other areas.

I have been trying to figure out what would have made me feel this same level of excitement before cancer entered my life. The answer is, I do not know. This, being able to feel pressure in my armpit, it is a minuscule thing. It is something that, prior to cancer, I never stopped and thought about being able to feel my armpit. But today, today it feels like a huge victory.

Each day I wake up and just want to feel normal, to feel whole, to feel like me. Each morning I am reminded that I am no longer who I used to be. I want to say I am a better version, but there is no possible way that THIS is better. Instead I remind myself that I am a different version of myself. A version that I have very little control over.

I know that I look different, that my hair is a mass of curls and that my body is riddled in scars. I know that my insides are fighting a battle that is ongoing, and possibly, never ending. I also know that the only area of my life I have control is my attitude, and I am doing my best to keep a tight positive hold on it. To that I will keep celebrating these small obscure victories that I encounter, like feeling pressure in my armpit.

Is There a Right Answer?

The other day I ran into an old teammate of mine from the local masters swim team I used to train with. It had been about five years since we had seen each other so we did a bit of catching up. It was natural for him to ask if I was still swimming but I didn’t know how to respond, in fact I was speechless. My mind was rushing through every way I could answer the question. Sitting next to me was Scott, and I must have been quiet for too long so he responded for me, stating I had been too busy recently. The guy said yeah same for him and we parted ways. But, the encounter got me thinking about how to respond to questions about my life.

If you read this blog you know I try to be very open and honest, but when it comes to face to face discussions it is so much harder. With the newest diagnosis I made a commitment to myself to be present at everything for my children. Some days Scott has to remind me that I made this promise because I really, really do not want to do anything. I mention this because over the past few months I have been around more often, leading to me running into more people.

The difficult part in being asked questions, even innocent ones, is that my answers, if honest, are hard to hear. I was told after a recent encounter where I nonchalantly said I had cancer, that I need to be aware of what I am saying. Unbeknownst to me, the person that I had been talking to was upset the rest of the evening. It leads to the question, “should I be a little less honest?”

I have been dealing with cancer going on two years now. For me, it is just easier to be open about everything. I am not ashamed of it, and, I can’t change, it is part of who I am. But, I am going to try to be a little less outspoken with people that haven’t seen in me in awhile.

Alicia BiedermannComment
The Pain That Comes From Living

I just found out that a dear friend and co-worker of mine passed away this morning. Dale was one of the most genuine guys you would ever meet. He worked off and on for our family business, and because of that, felt like a member of my family. Last month he went to the emergency room and it was while there he found out he had stage IV lung cancer.

My heart aches and my head hurts. Why? That is the only thought in my head right now. Why him? Why Esther? Why Kerri? There are so many people that have cancer, why are all the most amazing people the ones that are dying from this disease?

There is no answer, I know that, but it doesn’t help the sadness that I feel. Part of me is thanking the Lord for sparing him the pain that cancer brings as end of life nears. The other part of me is screaming inside at the injustice that another wonderful human being has been taken.

All this makes me reflect on my own diagnosis. Why am I still here and not someone else? How can I possibly not be defeated by this disease when all around me those that I love have been? I try, desperately some days, to be positive, to be hopeful, to just endure, but today is harder than most to keep the smile on my face.

Sometimes the pain in my heart from living through cancer is horrendous. I miss my friends and mourn for their families. I just want the suffering to end, it is enough. But ultimately, I long for the day a cure will be found to end this atrocious disease. To Kerri, Esther, Dale, and many, many more, know that you will not be forgotten. God be with you till we meet again.

Alicia BiedermannComment
Chemo TDM1 Round 4

The total keeps increasing with each round of treatment, 21 rounds complete, 4 of the newest targeted medicine. Do I feel confident that the medicine is doing its job and actually killing any cancer cells that could be hiding? Truthfully, no. Do I have HOPE that is? Yes. It is hard to be overly confident when the last time I was told all the cancer was gone while receiving both standard chemotherapy and targeted treatments. Being realistic is a place that I am happy to chill in this time.

My mom came with me again for this round.

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I think she has a little bit too much fun while she is there. First she roamed the entire infusion center looking at all the quilts that have been donated. Then she decided we both needed flu shots and since they had lots of needles here, it was the perfect place to receive them. Last she asked every nurse and patient about the port pillows that she makes and we donate. My mom is pretty laid back, dare I say quiet when compared to my father, but not today! She was walking into nurse’s stations and grabbing port pillows asking patients if they needed them. Then she lectured the nurses on needing to offer more than one so they had enough for all their vehicles. I mean, it’s true, you need one for every vehicle because with chemo brain you forget to grab that thing 90% of the time. She had me grinning the whole time.

The port pillows is something that has been near and dear to our hearts since I got my first one a few years ago. My mom and I have even discussed the possibility of creating a page on the website to offer to mail port pillows to cancer patients. As much as I think we should I am hesitant to do it and then have a supply and demand issue. If you are reading this I would love input on it.

Motherhood

Today my oldest child turns 12. It isn’t a big birthday, no double digits, not officially a teen, nor able to buy lottery tickets or a beer, but for me, it’s everything. All of my life I dreamt of BEING a mom. In fact my mom loves to remind me that as a little girl I’d tell her I was going to have enough babies to fill up an 18-wheeler. It seems God knew that was a few too many and only graced us with three…thank you Lord! But today I’m a little more grateful that I was able to enter motherhood.

Life takes us on some unexpected journeys, many that we might never have picked for yourself. Those journeys are what define who we are, they chisel away revealing the ingrained character inside us that ultimately becomes a piece of our soul’s foundation. When first diagnosed with cancer I wished that it had struck me before I had my children, there by eliminating them from ever having this be a part of their own story. With the second diagnosis I prayed that the cancer would leave and wait till I was in my golden years allowing me to relish every milestone of my kids lives. But for reasons unknown to me, This moment is when cancer is suppose to be a part of my family, and my life.

I may never know why this time is when I was suppose to have cancer, but there is one thing I do know. My fear of cancer effecting my children gets a bit smaller each day. There are so many things I want to teach them, and as crazy as it sounds cancer is helping me do it.

In a world we’re kindness seems to be shown by hitting “like” and less about actions, my kids are realizing that words and actions matter. They are seeing first hand how the smallest gesture of help can bring an abundance of blessings to the person on the receiving end. My little family has been on the receiving end of this type of kindness numerous times, and when we have had the opportunity to help others in need, my kids have rallied to do it. Two years ago I’m sure they would have helped me but there would have been lots of complaining.

Today, as I watched my girls bear hug their brother (while he pretended to hate it), I couldn’t help a bittersweet feeling roll over me. The relationship that they have is so much closer and deeper because they have a mom that has cancer. I watched them and thought, no matter what happens to me they will have each other. I couldn’t ask for anything more than that.

So today, the day I became a mother, I am a little more appreciative of this role.

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