Status Quo

If you have been following along you should know that when I disappear from long stretches it means that there is not much to report. This is a good thing. Many of you also follow Shannon on Facebook so you can see her from time to time on video or promoting one of her “Ladies Night” Craft events. For the most part, Shannon is doing well. The effects of the Lymphedema have become normalized. Shannon has gone over a year without any major issues related to her cellulitis, in large part to the fact she is taking daily antibiotic to fend off any infections that may creep up. This has been a relief.

Our church, Cool Spring Baptist, has a robust Recreation Ministry, which includes a basketball gym, aerobic room, weight room, and cardio. They even have a member that is a trainer working with individuals to improve their health. I have been working with her for a few months now, twice per week, and the results are starting to show. Shannon has been going to a weekly Pilates class, and has started to train one day a week as well. We are hopeful the increased focus on activity will result in less swelling, and a greater sense of well being for her. For those looking for prayer opportunity, this would be a big one. Prayers that the increased activity will help reduce her swelling.

Shannon has been focused over the past year on her business, Armore. You can check out her website at Armore.me  She really enjoys the creative process in making jewelry and projects for her Ladies night out. She has held a 4 events over the past few months, all of which were well attended and the feedback has been wonderful. Her mission is to be a light for others, and teach them how to do the same. If you in Richmond and have a chance to attend, I highly recommend it. If you are out of town, Shannon is working on creating a way for someone to purchase a gift box complete with a custom gift and inspirational message. More details to come.

Thank you so much for the continued support, and prayers.

Love, Kevin

 

 

 

 

 

 

 

 

Today

I am choosing to get healthy, Today. I know it is a series of steps. I have been thinking about it for a while now. I am consumed with helping Shannon get healthy and stay healthy. I am consumed with my kids eating healthy, but being consumed mentally and actually doing something about it are very different things. So goes life with anxiety and dysthymia. Food and nutrition and health are one of the hundred if not thousands of things that I am consumed with, at least mentally. I have spent the last few months working on my mental health and well being. I resigned from New York Life and turned my focus to writing, which led me to blog, and now have started a marketing firm, Waggle where I help business owners expand their business to reach new clients/customers with trust-building stories to be used on their website, and social media. The decision did not come easy, but when the decision was made I was able to move forward, with less anxiety. My life/business coach, Bunny Young,  gave me an exercise that I don’t use enough but when I do, really does help me. She called it “Monkey Brain”. When I am feeling anxious, to the point of distraction or analysis paralysis, when my heart rate is up, I am instructed to stop, on a whiteboard ( I installed a large mirror we have been moving from room to room with no place) and write down everything that is on my mind. Everything I am thinking about, worrying about, goes on the board. Next, I am to mark through any item that I cannot control. The next item, with the remaining items, of which I have control over, mark through the items that I cannot deal with in the next 3o minutes. Last assignment, erase the list. There should be nothing left on the board, and everything was just removed from my brain, my general feeling after the exercise is a sense of relief. I encourage you to try it out sometime when life has you to the point of stress and worry.

My first step in getting healtwaterhy is to drink water throughout the day.  I do not drink enough water, and I can feel it in my mind and body. I had gotten into a bad habit of switching from diet drinks to full strength because diet soda is bad for you… guess what it is all bad for you. So my first step today is to drink more water. In the coming days, I will add another step, define my goals, and keep writing. If anyone out there has been down this road, or wants to join with me, let me know. We can work together to find encouragement!

Getting Healthy

Shannon’s issues lie in her Lymphedema – the swelling of her inner and outer thighs. She swells because her lymph system is damaged from chemo/radiation/and lymph node removal. We take for granted our functioning lymph system. A little biology lesson for you:
The lymphatic system has three functions:
  • The removal of excess fluids from body tissues. …
  • Absorption of fatty acids and subsequent transport of fat, chyle, to the circulatory system.
  • Production of immune cells (such as lymphocytes, monocytes, and antibody-producing cells called plasma cells
Here is what Shannon has been doing and learning over the past few months:
November 2017 – Shannon and I visited the University of Chicago to meet with Dr. David Chang to see if she was a candidate for Lymph Node Replacement and Micro Surgery to rewire her lymph system. The process would be to remove lymph nodes from her neck and replace them in her legs. The surgery would require 1 surgery per leg, with no guarantees, and results could take upwards of 1 year to show any benefit.
December 2017– Shannon was referred to Cindy Stillwell Chronister of Core Health Thermography and Wellness. Cindy is a health and wellness professional using a functional approach to therapy and well being.
Shannon’s Treatment Plan
Core Health, Thermography & Wellness
     Electro Lymphatic Therapy- Currently 1x per week – 1 1/2 Hour session

Our bodies have 50% more lymph than blood and tend to be the most underrated and misunderstood part of our circulatory system.  However, the importance of the lymphatic system is becoming more apparent as it plays a critical role in supporting our immune system and fighting pathogens. Many health challenges can be caused or exacerbated by a compromised lymphatic system.

The lymph system is responsible for removing waste, as well as delivering nutrients throughout our body.  This is accomplished with a network of lymph nodes and collection vessels that act as a filtration and purification system.  Unlike the blood circulatory system, the lymphatic system does not have a pump.  Without assistance, Lymph is only moved with exercise (muscles moving), it’s own fluid pressure and also by nerve pulsations.

Lymphatic flow can be compromised by toxins, scar tissue from surgery or injuries, tight-fitting garments, stress and even aging.  Those who exercise less, who have more sedentary occupations and who may be exposed to more chemicals may also have a more congested lymphatic system.

ELT is quite different than manual lymph drainage, which can also be effective.  However, ELT is a full body therapy that can stimulate the lymph at a greater depth and will enhance lymph flow with far less time.
 
Using a combination of vibration, light, and electrical waves to stimulate lymphatic flow, ELT helps to dislodge trapped proteins (not to be confused with nutrient proteins) to release their bond.  The congested lymph is liberated and will flow out into its normal filtration and reabsorption channels.
          Zyto Biofeedback- Monthly

Zyto Elite relies upon an array of biocommunication principles and concepts that provide us with deeper insight when making decisions related to your individual needs. During a ZYTO bio-feedback scan, the Hand Cradle measures your body’s galvanic skin response (GSR – an established technology that measures fluctuations in electrical conductivity of the skin). You can think of ZYTO scans as questionnaires to which your body’s GSR data provides the answers. These scans are designed by some of the best and brightest professionals in the world for the purpose of providing the most pertinent information about your wellness. At the completion of a scan, the software’s analysis is documented in the form of a report.

In our office, Everybody is actually two words – Every Body.   Because every person is different, making it impossible to use a cookie cutter recipe.  Using the Loomis System and the innovative ZYTO scan technology, we discern information specific to your body’s unique needs – your biological preferences.
 
          Nutritional Analysis- Monthly

Food enzymes are a crucial component in our food supply, yet they are systematically removed to extend shelf life. Enzyme nutrition is the science of using nutrition to maintain homeostasis and health in the body.  It works with the body’s innate intelligence to restore energy resources using whole foods that contain protein, carbohydrates, fats, vitamins, minerals, and enzymes.

While shelf life is necessary, enzymes must be replaced. For example, when milk is pasteurized it depletes the vitamin A and D content as well as enzymes. Vitamins are added back in, but enzymes are not. Enzymes are the construction workers of the body. Protein, carbohydrates, fats, vitamins, and minerals are simply the building materials.

Every body is biochemically unique. Individuals cannot and should not be categorized or labeled to fit into a particular paradigm. What is good for the general public is not necessarily good for the individual. Before recommendations are made for an individual, specific biochemical and mechanical needs must be objectively ascertained.
 
          The Loomis System- Daily

The Loomis System® was developed by Howard Loomis, Jr. and is a system of techniques that can be used to determine the hidden causes of digestive and other potential health challenges. All stress, whether it is from a mechanical, chemical, or emotional source, increases the body’s need for nutrition. This system focuses on this need because when the body does not have the adequate nutrition to meet the increased stress, the results are always the same.

It is typical of our clients to have a lack of energy or some other nagging symptoms, however, they have not progressed into the disease process.
          Redox Cell Signaling Supplement- Daily
 Redox signaling is cellular communication within a living organism and is an essential function of normal physiology. In fact, a wide range of biochemical and physiological processes critically depend on redox signaling in and among our cells.
 
Health Link Family Chiropractic 
Chiropractic Adjustments
Shannon was referred to a Chiropractor as part of the Zyto Biofeedback results. She started going to Dr. Moses Wahl in February with a full analysis and treatment plan. She has been going 3 times per week for a couple weeks and is now at 2 times a week and will continue with care. 
 
          Meditation / Mindfulness
Shannon was recommended by Dr. Wahl to enroll in a Mediation Class and Shannon has been the past 2 weeks. Once per week for 30 minutes. 
 
Here for the Girls / Beyond Boobs
         In Person Breast Cancer Support 
Shannon was referred to Beyond Boobs (www.beyondboobs.org) in 2017 soon after her diagnosis and her involvement has been a game changer. There is something about being with other warriors that lift each other up. Shannon’s first battle with cancer was alone, she did not have support. Her second battle she has an army of warriors who have become lifelong friends, the support will always be needed.
Shannon’s treatment plan as you can see is extensive, expensive, but so worth it for her total well being and state of mind. The lymphedema will never go away, but so far the treatments work, to make her life enjoyable again. Priceless!

4 Years

My last post on Caring Bridge to our small and diligent “Prayer Team” consisting of close friends and family was four years ago almost to the day. Little did I know then how impactful those updates were to become. In those four years in between, Shannon was diagnosed with cancer again (breast cancer) and has had considerable health issues as well.  Along the way, I too, had my own health issues to deal with, that of depression and anxiety. I have spent many posts on catching up our new friends and supporters on Shannon’s journey through my eyes. The purpose of all of this was to provide healing for me, as the caregiver/ encourager. Writing has become a place of introspective therapy for me. Words come easier for me, part of my blessing and curse in being in my head a considerable amount of the time. This can work as an advantage in some situations and is paralyzing in other situations. Part of my challenge with my healing is understanding the difference between those situations and using my brain the best way I can. I feel alone in this journey, perhaps much like Shannon did with her first cancer diagnosis, but I am confident there are others out there experiencing the same as me. Shannon and my goal with this blog and subsequent online community are to bring together the warriors and encouragers into a safe place.

As I write this post it is March 7, 2018. I just dropped off Shannon at her Electro Lymphatic Therapy at Core Health and Thermography www.corehealththermography.com in Troy, Va., which is about 60 miles west of Richmond and 15 miles east of Charlottesville, Va. Shannon has been coming for therapy two times a week for the past month or so and has been experiencing wonderful results. We found out about this therapy from Bunny Young of A Better Place Consulting, www.abetterplaceconsulting.com. Shannon’s therapist Cindy Stillwell-Chronister is on a mission to help people to get healthy, through diet change, education, and healing. As far as we are concerned she is a guardian angel for Shannon. Cindy is the only therapist using Electro Lymphatic Therapy in the state of Virginia. Shannon feels so blessed to have her so close. For the better part of a month, I have driven Shannon to her appointments and waited for her in Cindy’s office while they spent the next one and a half to two hours in treatment. Bunny has recommended for me to take time for myself and to write, and she encouraged me to drop Shannon off and go grab a coffee at one of the local spots around the corner and write during this time. How empowering this is for me, and I am gladly doing it.

In future posts, I am going to detail what Cindy has educated us both on health and wellness, and this applies to not only cancer patients but for everyone. We are at the beginning a lifestyle change that will change the trajectory of our health and definitely help our kids – fourteen and twelve to have a better, healthier life.

In future posts, I am also going to chronicle my return to health. As of today, I am 30 pounds overweight, on 2 blood pressure medications, and now an anti-depressant/anxiety medication. Accountability is the key and I am sharing this with you so that you can perhaps hold me accountable through encouraging comments and prayers.

In future posts, I would also like to share other warriors and encouragers stories. I have a few in mind but would love to hear from you. Are you a Warrior or Encourager that is in need of community, healing, growth? Please share with me privately, my email is in the about us section. I would love to share the joy of writing with you and give you a voice on this page.

Shannon and I are working diligently with Bunny Young to create this community which empowers everyone to be a ripple, to help someone, who in turn will help someone, and so on and so on. I look forward to continuing to write and to share, laugh, and cry along the way. Thank you for being a part of our journey and for letting us be a ripple for you.

Love – Kevin

In Courage

When cancer struck Shannon in early 2013, we were not prepared (who is really). Shannon and I were in shock with the diagnosis.  It was not sudden but materialized over a year of abnormal pap smears. In hindsight, I feel Shannon had the fears all along, but shielded them from me, until it was confirmed that she had Cervical Cancer. I was always an encourager, so the role was easy for me, or so I thought. The first days of doctor appointments, we were both numb, but Shannon was healthy, she felt great, looked great, so the first damage that is done with an early diagnosis is mental. In looking back and hearing other warrior’s battles, Shannon really needed to be speaking to a trained therapist that specializes in working with cancer patients. Little did we know the mental obstacle course we both would be facing as she endured surgery, chemo, radiation, and doctor appointment after doctor appointment. We trusted her medical team, who did an adequate job of removing cancer. We did not know the hidden illness that comes with lymph node removal and radiation – lymphedema. It seems weird to report, and I am curious to hear from other warriors and encouragers on their journey, but cancer did not affect Shannon as bad as the lymphedema. She was mentally prepared and had faith that the battle before her would be won.  Lymphedema, however, was the challenge and where my role of encourager was tested daily.

It was the constant swelling, and uncomfortableness morning, noon, and night that was debilitating for her. She battled cancer, a hysterectomy, chemo, and radiation like a champion and was prepared to get on with her life. But the swelling post-surgery never subsided and continued down her leg to her ankles. Walking was a chore, sitting, was a chore, living was a chore, and on several nights, in her darkest hour, she shared she would rather die than to continue feeling this bad for the next 30-40 years. I did not feel she was suicidal, and this was a red flag that should have prompted a meeting with a trained therapist to help her. I mentioned it but never pushed her or encouraged her to explore this option.

The years of living day to day and with Shannon having lymphedema took a toll on me, but I was unaware. You see I am a fixer and problem solver.  Most men are, we handle issues by getting our toolbox and getting to work to sort things out, never reading the instructions, and never asking for help.  It is how we are built. Women are built differently. They talk to talk, to vent, validate each other, and when they are done, nothing is fixed but they feel better, connect better, and heal. Shannon did not need me to fix anything. She did need me to listen, and comfort, and validate. During this time Shannon so desperately wanted to speak with someone that had been down the road she is on. The friends she had, she felt disconnected from. She often mentioned feeling miserable in social situations because she did not fit in.  She envied their youth and vitality, she longed to just be the old Shannon again.  Not rational thoughts but clearly how Shannon felt. As her encourager, I had no idea what to do with this information, how to help her.  I did what I knew, I kept her laughing, I fed her, and I loved her.

Encouragement – the action of giving someone support, confidence, or hope

Synonyms: heartening, cheering up, inspiration, motivation, stimulation, fortification, support, morale-boosting, a boost, a shot in the arm

If you look at the word Encouragement closely, you may see a word in the middle that stands out, C-O-U-R-A-G-E.

Courage – the quality of mind or spirit that enables a person to face difficulty, danger, pain, without fear; bravery.

Our story, is a story of cancer twice, and lymphedema. The role I fell into that is labeled “Caregiver”.  I never was comfortable with that name, as it is not altogether accurate. In a closer examination of the past few years, a better label would be that of Encourager. My wife fell into a role, she never expected or wanted, that of “Cancer Patient” or “Survivor”. She did not like that label. But she felt better with “Warrior”. Both Warrior and Encourager are positive strong words that more define the role of a person battling and those around them that are supporting them.

Warrior – a person engaged or experienced in warfare; a person engaged in some kind of struggle or conflict.

Encourager – to inspire with courage, spirit, or confidence.

I shared this discovery with Shannon and she agreed wholeheartedly with the label. She pointed out which was not as obvious to me, “Look at the first letters in each of the words… W and E, which combined spell WE, very ironic but fitting description of the battle. For Shannon, her first cancer journey was a very personal and solo journey (only confiding in me). She was not in a good place nor was I. When she was diagnosed with cancer the second time, she was blessed with many encouragers, from the nurse navigator from the hospital to her plastic surgeon, her support group – Beyond Boobs / Here for the Girls. Shannon’s “I” turned into a “WE”. Her outlook improved, she was happy, and this was a blessing.

What I failed to see until her second cancer diagnosis (Breast Cancer) was that the Encourager needs Encouragement too, but not from the Warrior. In a war, there are many battles that comprise the totality of the event. I had no idea the battle I was in. I was oblivious, but the toll of insurance, and deductibles, and fatherhood, and kids, and cancer, and lymphedema, career, and finances all took their toll on me almost to the point of breakdown. My normal become anxiety, facial-ticks, and panic attacks. This was my normal, I had no comparison to draw from. My wife suggested I “speak to someone” because she realized she was unable to offer any comfort or advice for me. I took her suggestion and reached out to a Christian Counselor, just to talk. I had so much on my plate. I remember my first meeting with the Dr. it took a few minutes to answer the question of “What brings you in today?” He confirmed I have a lot on my plate. After 3 sessions he assessed that I had anxiety and depression – Dysthymia, a form of functional depressive disorder and I could feel better with counseling and medication. As it turns out, I had this my whole life and in looking back at my family history, I am convinced my parents had it and their parents, and siblings (my aunts and uncles) as well, because of the history of alcoholism in my family. I learned more about the disease and realized the family before me were more than likely self-medicating using alcohol. The tables have turned, and Shannon adds a new role to her Warrior designation and that is an Encourager to me, who has become a Warrior of anxiety and depression. We are all warriors battling something, and we all need encouragement. Shannon’s and my story is one of cancer and depression. For you, it could be something else.  For men, we need a safe place to come to for support. For women, they need a safe place to share and be validated. Shannon and my hope with this community we are starting can be a healing place for everyone to come and to Find Encouragement.

Saturday

This is the last post from Shannon’ first battle with cancer. As you have read, it was not pretty, but there is beauty throughout the posts. God does not guarantee a perfect life, here on earth. He does promise eternal life for those that believe and have faith.  These posts have been extremely hard for Shannon to read, as you can imagine. These images, and words, and memories were shelved by us buried really, and reposting has brought them back. We discussed how far we have come and look back with some relief. In this post we were reminded her battle was not just with cancer but with anemia. The medication she had to take was brutal on her body. Enduring the chemo and radiation was hard enough but adding on this additional medication and treatment pushed her to the brink. Shannon is strong, and courageous. She is a fighter and demonstrated a grace through adversity, I can only look back on as inspiring. Throughout her journey she was looking to give back to others and to help. This continues to this day. As I type this post, she is busy working on creating a special project as the first of many to help inspire others through action, by being a Ripple for others. Shannon is drawn to a quote from Mother Theresa that encapsulates her life mission:

I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Shannon is a ripple maker and wants to inspire everyone to be a ripple for others, and on, and on. We hope you will find inspiration and encouragement from these posts, to see that life is difficult, cancer sucks, but with faith in God, and a team of encouragers, anything is possible.

Saturday 

Journal entry by Kevin Beasley — 3/1/2014

It is a little after 7 am on Saturday, March 1, 2014.  Shannon is downstairs with Jack and Sydney is sleeping over with a friend. Let me tell you why I am glad Shannon is downstairs with Jack and not up in the bed. A little history for everyone since it has been awhile since I last posted.
Shannon has Hemolytic Anemia. Her red blood cells are being destroyed and removed. We don’t know if this is related to her earlier treatment or if it is inherited. We may never know, we just want to control it.  Shannon was referred to a Hematologist because her red blood cell count was low. Her first course of treatment was Prednisone, which from the last post I said was a blessing and a curse. Prednisone carries some significant side effects such as swelling, moon face, weight gain etc.  Shannon was able to taper off the Prednisone last month, but upon checking her blood levels they put her back on 5 mg (She started at 60mg) they also recommended a treatment called Rituxan, which is given via Infusion (IV) every Friday for 4 weeks. Yesterday was Shannon’s 3rd treatment. Let me tell you about this and I will be able to explain why I am glad Shannon s downstairs with Jack right now.

Two weeks ago, Shannon and I went to have her first Rituxan treatment. The doctor said it would be easy, nothing like chemotherapy and she should be good to go with no real side effects. Well if you know Shannon’s journey, she can’t do anything like everyone else. She had concerns as she has VERY small veins and having an IV is difficult because of the veins. They run the IV at the lowest rate using a pediatric needle. So the first treatment took all day and she did not even get to finish the full bag of Rituxan. Let me back up and explain what Rituxan does. This is my non-medical mind relaying this, so if you want a better description google Rituxan for Hemolytic Anemia. So here goes…Rituxan is putting good antibodies into her blood to reprogram her T-cells at a molecular level. These antibodies will take over and let her body calm down by not attacking her red blood cells. The hope is she will be removed from prednisone and her red blood cells will remain stable. This is our hope. Ok back to the first treatment.

They did warn us that most people will have an allergic reaction on the 3rd bump up (they increase the infusion rate over time as the body adjusts to the medicine going in). Because Rituxan is a blend of hamster, yes you read that right, hamster and human antibodies people have an allergic reaction. Knowing this they give patients Oral Tylenol and IV Benadryl. Shannon had an allergic reaction, which was flushed face and throat swelling. She said it felt like marbles in her throat. The nursing staff knew it was the 3rd bump when they came over (they said later it took less than 5 minutes after the 3rd bump and they had been watching her). They stopped the treatment and gave her an IV steroid and let saline run for 30 minutes then resumed the treatment.  We ended up leaving at 4:30. Shannon was tired from being there, tired from the Benadryl, tired from a sore throat and just overall YUCKY! This continued the rest of the evening and all of Saturday. She could not do much on Saturday, not even go to Jack’s basketball game.  On Sunday she felt better but not great. I think it was into Monday before she felt normal and guess what, Friday was around the corner for #2. Shannon, like she has during her WHOLE ordeal, put on a brave face and said ” I only have 3 more. I can do this”.

For treatment #2, Shannon’s mom went with her.  My parents were in town to see Jack’s basketball game, so they were able to be with the kids and I went to work. Her second treatment was much like the first.  She had the reaction, they stopped and repeated the procedure from the first treatment. She was there from 8:30 to at least 3:30 or so. She came home, tired, feeling crappy same as the week before and unable to see Jack’s game.

Let me tell you about Jack for a minute. Jack has played B-ball for 3 years now. I may be biased, but the boy can play.  He is better at his age than I was. He played for the YMCA’s team for seven and eight-year-old kids.  He is fast, can shoot, defend, steal, pass, rebound etc. He must have had good coaching, (I have been his coach for 3 years (Smiley face)).  Shannon did get to see him play the last game of the season, which was Tuesday.  Our team struggled as we had some new ball players who had never played. We got to play a team of similar stature. Because the game was on Tuesday, we had a low turnout (games were usually on Saturday and Practice on Thursday) so we had 5 players show up and not our best players. The 2 other players that could really play were not there. Jack ended up putting the team on his back and scored 13 of the 15 points for the game. We went into overtime but lost 15-17, but Jack really turned a corner in that game and Shannon said that will be a defining game in his career because he really came into his own. We are so proud of him and he is proud of himself.

We get to yesterday. Shannon was DREADING Friday coming. Most people are looking forward to Friday-not Shannon and not for the last four Fridays. Everything seemed to go right yesterday. We got in at 8:30, they took her blood by finger prick to check her numbers, we got into the Infusion room and they decided to go ahead and give her the steroid boost along with the Benadryl. Shannon took some Gas-X before the treatment. It all worked, no reaction, we were out of there by 1:30. She felt good, a little hazy from the Benadryl, but good. She wanted to go to Hobby Lobby to get yarn (Shannon has learned how to crochet and is never without yarn and or needles, I am not sure what the tools are called. She was very moved as our church has a prayer shawl ministry, where folks can turn in prayer requests and someone on the team will make a shawl, pray while they are making it for their person and the shawl is given to them with a note. Shannon received one this summer and was moved by the gesture and the shawl. She learned how to crochet and has been making them for folks she knows that need prayers, her way of giving back.

So today is a good day. She is not in bed. She is downstairs with Jack, probably playing Lego or Harry Potter on the X-Box. She loves those Lego games.  She has been on me for posting an update so this time I made it extra-long. Shannon still needs prayers and encouragement. I did not go into it too much and will in another post, but she is still struggling with swelling though, in her abdomen, not so much in her legs, and is extremely uncomfortable. She wants to exercise, lose weight, feel normal and yet she can’t. Normal is not quite here yet. She is still fighting, and I feel like she needs a break, so my prayer requests are that God continues to bless her with good days and that Normal is right around the bend. I want to thank everyone for their prayers and support.
Love, Kevin

Swelling

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This post was from just over 4 years ago, and we have a little more clarity on the Lymphedema. The Richmond medical community, and probably the medical community around the country seem to be puzzled by Lymphedema. This is Shannon’s biggest issue right now, and we were and are so frustrated with it and felt so blessed to have found some help. Since we are all in the same page now with God Wink’s (If you have no idea what I am talking about, go back one post “Update” and it will be explained) Enter Bunny Young – Life/Business Coach. I met Bunny, by “chance” at a networking meeting, that I founded and act as Chair, Two Twelve “Team Integrity”. Bunny was invited by a Scott Golightly – Estate Planning Attorney. Since meeting Bunny “Wink”, the trajectory of Shannon and my life has changed. Bunny you see is a cancer survivor, and not just any cancer – Cervical Cancer “Wink”. Shannon longed to meet someone that she could relate to, she felt alone during this time. Even in her breast cancer support group, she feels a bit of an anomaly. Bunny and Shannon connected and talked and shared. Bunny referred Shannon to her Lymphedema Therapist, Cindy Stillwell Chronister. As it turns out, Cindy is the only therapist in the State of Virginia using Electro-Lymphatic Therapy for treatment “Wink”. I always knew in the back of my mind some of Shannon’s issues could be controlled by proper diet. Cindy is a Nutrition Therapist as well. “Wink” Bunny is working with Shannon and me to build a community for “Warriors” and “Supporters” – You are on the page that she help me to create as a start to this community, you right now are part of that community and I could not be more grateful that you are taking time to read this. Bunny also works with a woman, Ginger, that is starting a business based on her passion. A business that fuels her passion for clean eating, gardening, and farming. I have spoken to Ginger and look forward to learning more from her about health, and diet, and clean eating, and will share this in future posts. Shannon and I have learned so much in the past years about what not to do and what to do. Our hope is that we can share our journey to make things easier for those behind us and perhaps ahead of us. I wanted to share these posts with the world to give everyone a frame of reference for where we have been in hopes of being able to move forward. Shannon’s struggles daily, but is learning so much about herself. I am just a witness to her self discovery and a supporter of her journey. It is amazing to see in her weakest moments, she did not realize it but she became stronger. She has a voice and a story that needs to be heard, so help others. Her story is her Ripple and she hopes to cause a wave of education, compassion, prayer, and encouragement.

Journal entry by Kevin Beasley — 12/7/2013

Swelling

My last journal entry was October 30. Things have shifted a little with Shannon.  She continued taking the Prednisone but after a week or so she noticed swelling returning, this time just in her upper thighs where before it was throughout her leg down to her toes. The swelling has caused numbness in her lower leg mainly in her left leg. Her Hematologist and her Gyn Oncologist conferenced and decided to treat the numbness with a medication called Nuerontin – the side effects are mood changes/suicidal thoughts. The goal with the Prednisone was to get her hemoglobin back up, which it did. The side effect of Prednisone is swelling, so it stopped the swelling early, but with prolonged use causes swelling.  We were left with some big questions.  1. Why was her hemoglobin down. 2. Her Lymphedema therapist said that her swelling is not presenting like typical lymphedema. 3. If it is not lymphedema what is causing the swelling. Shannon just met with the hematologist on Thursday and we posed these questions.. He had no answers and said he wasn’t the one to ask these questions. Who is? They referred Shannon to a Physical and Rehabilitation doctor at MCV.  Shannon meets with both her Radiation Oncologist for her 6 month follow up and her Gyn Oncologist next week. We hope to get some answers.

Beth, Shannon’s Lymphedema Therapist by Shannon’s urging called her Gyn Oncologist to discuss her treatment. It seems through our search and experience, the cancer medical community throw everyone into the lymphedema bucket, with no real understanding. If we did not ask more questions I feel like Shannon would have been sentenced to Lymphedema therapy, compression, massage, etc for life. We WANT TO KNOW it is lymphedema not THINK. So we had Beth call and she recommended rather than seeing the doctor at MCV she should go to a specialist and they have been referring patients to a doctor in Charlotte, NC that is a Physical and Rehabilitation specialist that specializes in Lymphedema.  We are encouraged at least that we are moving towards some answers.

Shannon is trying to keep her chin up and to those around her will sense nothing is wrong with her. Please know that is gods helping hand to provide her strength and grace to those around her. She needs prayers and support as she is feeling down about her situation, she does not like how she looks, feels, acts, etc. Please pray for Shannon that we get some clarity from the doctors and that this is only a temporary situation. Shannon’s life may never be normal again, just the same as all of us that get older, have children, etc.. but please pray she can get a sense of normalcy that her body will return to a comfortable state that she can do the things she used to be able to do.

I will update as we know more information and as always thank you for your prayers and support.

Love,

Helping Hands

Helping Hands

I almost did not repost this. For those of you going through this battle with cancer, this is the secondary issue related to being dependent on health care providers for life. Health insurance is expensive, and the deductibles are extremely high. After 5 years of ‘care”, we are in significant debt related to Shannon’s treatment, I have tried on a couple occasions to add it all up. It is depressing and was a contributing factor in my anxiety. I shielded this from Shannon, as I am sure you as a caregiver did too. Shannon feels tremendous guilt related to the bills and she should not have to, as you just read, I am a fixer, and I assured her we would be able to get through the business side of cancer and treatment. The hole keeps getting deeper, as much as we try to get out. It took a lot to ask for help during this time, and it continues. We are still receiving help in many ways, my parents, Shannon’s parents, my cousin Karen have all been supporters of health and healing. I cannot thank them enough. Cancer is devastating on so many levels, including the high cost of care. As Shannon is now utilizing some “alternative” treatments for her lymphedema, my eyes have been opened to our current healthcare system. No, this is not a rant on Affordable Care Act, it is a rant on how the system of Healthcare Providers, Pharmaceutical Companies, and Health Insurance profit from Americans being sick. Check out “The C Word” on Netflix if you want an eye-opener.

Shannon is receiving treatment currently for lymphedema, it is not covered by insurance, but insurance would pay for surgery that costs upwards of $30,000.  Let that sink in.  Shannon’s breast reconstruction EOB was a staggering $141,000. Her stay in the hospital this past summer was over $20,000. We did not have to pay all that, of course, but with deductibles and out of pocket cost, we were easily charged $10,000 per year, notice I said charged because we are still paying, or in collections on a lot of that. In future posts, I am going to outline Shannon’s care journey and the path we are on now of clean eating, chiropractic care, supplements, and electro-lymphatic therapy.

Journal entry by Kevin Beasley — 9/17/2013

Several people have asked in recent weeks how they could help us. We have medical insurance but with high deductibles and out of pocket expenses before our healthcare kicks in to cover 100%. In August our year restarted so we have another set of deductibles and out of pocket expenses to meet. As I posted in the previous post, our income has been affected severely. I have ignored the medical bills as long as I can, and after prayer and guidance decided to utilize technology and the internet. I have set up a giving site on www.youcaring.com for Shannon’s Medical expenses. This would be the biggest help right now.

Shannon has started physical therapy to help with the lymphedema. She will need ongoing care to help subside the swelling in her abdomen and legs. She will need to have expensive compression garments that insurance may or may not cover. It is my hope that the site will allow us to catch up on our medical bills and provide for the ongoing expenses Shannon will need to return to some level of normalcy.  Her life right now is going to be managing the swelling through exercise, compression bandages, massage, and rest.

Caring Bridge allows for donations and my fear is perhaps some family and friends may have given to Caring Bridge thinking it was going to us.  It does not. Caring Bridge offers a great service by allowing us to post updates, but the donations go to them and not the patients directly.  www.YouCaring.com is a site that charges no fees and allows patients to receive funds directly.

We are so grateful for our friends and family that have been so generous with their time, gifts, cards etc.  Cancer is scary, but we are finding that post-cancer, medical bills etc., are equally so.  Thank you all for your love and support.

Love,
Kevin

Update

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All throughout Shannon’s battle/ journey with her health issues, God was present and with us. Our faith never wavered. We are not sure why Shannon was given this path. Shannon and I speak of it often in these recent days, that in comparison seem much easier but hard nonetheless. We are stronger, more loving, better friends, and parents. Our journey seems unimaginable to many, we too are in awe of what we have endured as a couple. The underlining strength we have is our faith. Shannon is prepared to die. Let that sink in. We had this discussion on one of the dark days. In her worst days, she said she made peace with the fact that she is prepared. I would love these posts to be happy and inspiring, and don’t get me wrong, they are. But in fairness, there are many stories that are not, and without faith, and a belief of everlasting life, the days we have here on earth are numbered, for us all. It is what we do with the time we have that is important. For Shannon, it is making a positive impact on those around her, and inspiring them to do the same for others – Be a Ripple. Be a stone thrown in life’s waters, the ripples carry forward and move in a positive direction. This “Ripple Effect” is Shannon’s mission now, and it could have only come from God.

“Therefore encourage one another and build each other up, just as in fact you are doing.” Thessalonians 5:11

 My hope in sharing this is to let those know that don’t have faith, or lost it along the way, or feel like God is far away, please know and find comfort in others. Having a prayer team is essential. I used writing as a way to heal and was comfortable asking for prayers by sharing what we were going through. God is with us, if we are looking. I mention a book, “God Wink” that was recommended to me by one of my “Brothers in Christ”, Brian Leach. I am so grateful for the recommendation, because as strong a faith as I feel I have, there were many days that I felt God was far away. This book is a collection of stories that demonstrate just how close God is to us. I encourage you to get it, read it, and share with your loved ones.

Update

Journal entry by Kevin Beasley — 10/30/2013

Hello to everyone and sorry again for the delay in updates on Shannon. Shannon has asked me over the weeks to let folks know what has been going on. I apologize and will do my best to catch everyone up.

Let me start by saying thank you for those folks that sent in donations and checks. I was able to make a small dent in the medical bills. They continue to grow as I pay them down, but the funds that came in really helped.

Shannon has had lymphedema therapy twice a week for the past 4 weeks. Shannon continues to have swelling and fatigue. Treatment consists of manual lymph drainage (sort of like a soft massage) moving the fluid around her body. She had to have bandaging which she would wear during the day to reduce swelling, this meant new clothes and having to purchase tennis shoes 2 sizes too big to accommodate the bandaging. Her clothes did not fit, her shoes did not fit and in her mind, this was worse than having cancer.  The therapist said walking should make her feel better because it gets the heart pumping and gets the fluid moving. It did not make her better, but on the contrary, made it worse. Shannon was not doing well emotionally, or physically and it was showing. Here is a “God Wink” moment, (if you have not read this book, you can probably get it at the library or for sure on Amazon; “When God Winks”, written by Squire Rushnell. There is a newer device for lymphedema patients that is still considered experimental, the “Flexi Touch”. This is a device that sends air through chambers that uses Velcro around the patient’s legs.  It mimics the manual drainage that she has during her appointments. Most insurance companies will eventually cover it, but because it is experimental and expensive they fight tooth and nail. Shannon was denied just recently.  Here is the God moment, in Shannon’s darkest time, she went to therapy and her therapist Beth, said “Hey Shannon I was cleaning up in the office and found this Flexi Touch, you want to use it till you get yours”.  We were floored. It has made the biggest difference for Shannon. Here is an $8,000 device just laying around in a box, and of all the patients they have (and they have a lot) her therapist thought of Shannon. We know that God is definitely with us on this journey and we are so grateful. Shannon has been using the Flexi touch daily which has really helped with the swelling.

Two weeks ago her therapist called Shannon’s Gyn Oncologist to let her know that therapy was not going as well as she had hoped and maybe there was something else going on unrelated to lymphedema. Her doc ordered another Ultra Sound on both legs as well as another CT scan, looking for blood clots in her legs. Both came back negative. Her doc ordered new bloodwork.  It came back showing low red blood and low white blood cells, so she referred Shannon to a Hematologist because Shannon was anemic – low hemoglobin (red blood cells). If you remember this is what caused Shannon to need a transfusion prior to our beach trip this Summer.

We met with a Hematologist at VA Cancer Institute. They ran blood tests and determined her body was producing red blood cells, however probably due to the chemo and radiation still in her body, her body was fighting the red blood cells. This could be treated with Prednisone. Shannon has been on prednisone for a week; 3 pills a day and guess what, no swelling. Shannon is ecstatic. We just returned from the follow up visit. Shannon’s hemoglobin is up to 9.7.  It was at 7.6 just last week. Her weight was down to 134 where it was 143 last week. Shannon is feeling great, swelling is down, she is not wearing her compression and feels wonderful. The doctor reduced her prednisone to 2 per day and we will see how that goes for the next 2 weeks.

I have started a new career with New York Life based in Richmond. I will be working with individuals and business owners helping them plan their finances and insurance. My first client is Shannon’s uncle, Ashton Alvis, who needed some funds that were left to him by his partner who passed away in March. I will be sending out a letter in the next few weeks letting folks know what I am doing, so if folks need help or know of others I would love to meet them. If you are interested please respond with your address and I will make sure you get the letter, I am working on compiling a list and want to make sure all those that know Shannon and I, know what I am doing if you need help or know of others that might.

The kids are doing well in school and everything is back to normal. Report Cards come out this week and we are certain both kids will have great grades.  I am just back from going to the NASCAR race in Martinsville with my parents and Shannon’s dad, Charlie, along with my friend Jonathan Orrock and his dad, Jim. We had a great time camping out near the track.  We had Hot Passes which allowed us to be in the Pits and rub elbows with the drivers. I got a pic with Kasey Khane, #5. We saw them all and we had a great time.

Shannon kept up with Jack, attending the school Fall Festival and then had some girl time with some friends Saturday night. Sydney went camping in Charlottesville with her Girl Scout Troop last Saturday and Sunday. We are headed to Chapel Hill this weekend as Tarheel Basketball kicks off with the annual exhibition game. We will get in line around 2:00 PM on Friday afternoon and stand for 4 hours in hopes of getting as close to center court as possible. The last 3 years we have been 4th row or better.  Fingers crossed this year works out the same.

All in all we are so grateful for all the support we receive and all the help. The Lord has blessed us even during this time of despair.  We feel his presence and feel the prayers. Please continue to pray for Shannon’s healing.  The prayers are working. I would also like to add prayers for me as I take on this new career so that I may provide for my family.

With Love,

Kevin

 

3 Months

It is hard to believe reading this back, as I mentioned in previous posts, (I have not read these entries since I wrote them almost 5 years ago) that so much has happened. We have lived day to day for the past 5 years without looking forward at all; we just could not. Shannon had many dark days and nights during this time and for the years to come. The lymphedema that she was left with, along with the hot flashes of menopause are the reminders of her diagnosis and treatment. These were hard days for me looking back. In hindsight, Shannon really should have been referred for counseling from a trained professional to help her deal with her emotions and her life. I was not equipped to be her counselor, I could be a lot of things, but providing psychological support was not one. Men are fixers of everything – or so we think. We get our “toolbox” out and want to fix EVERYTHING. I could not fix Shannon, try as I might. There were days that Shannon was just done, and she confided in me her darkest thoughts, which tore me to the core. I may have mentioned she needed to get help, but I did not do anything about it because there were good days too. For anyone that is reading this and is going through this or has gone through this, you can relate. As a caregiver, you need to care for your warrior, but you MUST CARE FOR YOURSELF TOO. I cannot repeat this enough. Between the lines of these posts that I am writing is my story, which I have yet to tell and look forward to exploring with you in the days, weeks, and months to come.

Journal entry by Kevin Beasley — 9/12/2013

3 Months

It has been awhile since I have posted an update. We have been trying to return to a sense of normalcy. Let me catch you up on the last month or so.

Shannon had her one month follow up with Dr. Johnston, Radiation Oncologist. She had been experiencing swelling in her legs that we thought was related to the radiation/chemo treatment. The doctor confirmed this, and recommended Shannon go on a water pill, LASIX to help with the fluid retention. He said he was not able to prescribe, but her PCP or Gyn Oncologist should be able to. We called Dr. Boardman’s office and she prescribed Lasix and suggested she go to her PCP to get a handle on her elevated blood pressure. Shannon’s blood pressure was perfect during treatment,120/80 most days. Her blood pressure now is 140 / 90.   We were set to go the beach, the much-anticipated beach trip, on Saturday August 17th. We went to the primary doctor to get a handle on the swelling and to check in as her blood pressure was elevated. The doctor ran all sorts of tests. The labs came back later in the afternoon.  The doctor called to say that Shannon’s hemoglobin was 5.5 grams per deciliter; if you remember the goal for chemo was above 10 grams. Needless to say, it was too low and they advised we go to the ER as it was 4:30 on Friday. Our experience with blood transfusions was painless as she had one liter given during her treatment. It took about an hour with her PICC line. We expected a little more time given going through the ER but we really did not know what we were in for.

We opted to go to Memorial Regional near our house rather than driving 20 minutes to Henrico Doctors where her Gyn Oncologist office is and where all Shannon’s records are in the system. Her primary doctor assured us she would call the ER and let them know we were coming.  We really thought that would make a difference. We got to the ER and did not have to wait long before we were seen. She proceeded to go through Triage like she was coming in with a broken arm; blood pressure, weight, history,etc. We had to go through EVERYTHING, which we understood. To make a very long story a little shorter. Shannon had to be admitted to the hospital to administer 2 pints of blood. She did not get her blood started until about 10:00 PM that night. Keep in mind we were supposed to be riding to Pine Knoll Shores for 4 1/2 hours the next day.

The miracle neighbors the kids have been playing with, The Jett’s, asked if Sydney and Jack would like to spend the night at their house on that Friday night. It was truly a blessing. They were distracted as we really tried to downplay the hospital stay with the kids. They have had enough to deal with this summer to be worried again for their mom. Shannon was fine and endured a little more picking and probing and we finally left about 1:00 PM on Saturday.

My mom was able to move our stay to Sunday to Sunday which was a relief. We headed to Pine Knoll Shores on Sunday morning and arrived about 3:00PM. We had a wonderful week, spending time at the beach with family.  The Longs, Burlees, and Horner clans were down.  The kids even met some new friends that were neighbors of Paula and Joel Long, the Woods, Blair, Thomas, and Russell. The kids had a blast going on a boat ride to Cape Lookout with Lisa Burlee and her son Billy and their new friends the Woods. Shannon was really having difficulty with her legs swelling and tried to have as much fun as she could under the circumstances. She went shelling almost every day, enjoyed the beach as much as she could. I know she was happy to be there but longed to not be in so much discomfort every night; the swelling gets progressively worse throughout the day into the evening. The swelling has really been an issue for her; worse than the chemo and radiation if you can believe it. She was down because she envisioned this being her life forever.

To fast forward, the kids have returned to school which allows for a much-needed break for Shannon during the day. She is able to rest up and be ready for snack and homework when the kids get home at 2:45 pm.

On September 10, we had her 3 month follow up with Dr. Boardman, Gyn Oncologist that performed her Hysterectomy. She used the word remission,  which is a blessing. The doctor reassured Shannon that she LOOKS GREAT! Everything looks great and she needs to have patience. Shannon is in menopause and has been experiencing hot flashes. We knew this would happen as Shannon chose to not to have an additional surgery to move her ovaries with no guarantee that they would not be damaged during radiation. The surgery would have delayed the chemo/radiation treatment and Shannon did not think it was worth the extra time and the benefit was not there.  She is now on hormone replacement which should end the hot flashes and she should be back to normal in a few weeks.  Dr. Boardman reminded Shannon she should start feeling back to normal from everything in 9-12 months post treatment.

On September 11 we had her first appointment for Physical Therapy with a lymphedema therapist.  Due to the lymph nodes being removed, the radiation and chemo, no one really knows why one person has lymphedema and another does not.  Irregardless Shannon has secondary lymphedema.  The lymphatic system carries a clear fluid called lymph towards the heart. When the system is compromised fluid builds up in the arms or legs depending on where the lymph system is compromised. For Shannon it is her pelvis, legs, and ankles. Let me point out, this was caught early and with exercise, massage, and compression she should be able to have a normal life. She will have to work at it daily, eat right, exercise, but doing all this she should be able to do everything she would ever hope to do.

I would like to ask for prayers for Shannon that the treatment she is receiving for lymphedema helps her both physically and mentally. She was very down for the past two weeks prior to her doctor’s appointment. Shannon is not working now and probably will not for the foreseeable future.

Prayers for Jack and Sydney are that they continue to do well in school and for them to understand and be comforted that their mom is doing well and will be there for them.

I will even ask for prayers for me that I am able to provide for my family during this time. Without the help of Shannon’s parents and my parents we would not have been able to make it financially to cover our basic living expenses, healthcare, etc. We have experienced tremendous financial stress before the diagnosis and ongoing. Shannon is unable to work, and I am 100% commissioned and sales are low as to be expected in a new venture. I am rebooting my business as well as applying for full time work to provide for stability.

We would like to ask for prayers for our parents who are leveraging their own retirements to help us during this very difficult time.

I will say through all of this we continue to believe in Jesus Christ, and that God has a plan for us. I wish I could understand what this plan is but all we can do is to be faithful to God and continue to believe in him. Our faith is unwavering!

I will continue to update this post as we have new info to relay.

Shannon has worked the past few weeks on thank you notes, but I also would like to thank everyone for their kindness, prayers, notes, gifts, etc. We are truly blessed to have a great support network of family and friends!!

Love,

Kevin