The new battle

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When you’re newly diagnosed, the mountain that looms before you seems too great to climb and too heavy to carry. The barrage of information, statistics, choices and decisions seems endless, yet by the grace of God, you navigate your way through. Treatments begin and, hopefully, the mountain begins to shrink.
I remember during my year long (monthly) treatment cycle settling in and feeling a sense of safety. There was a degree of comfort in knowing that, even thought there was a serious battle going on inside me and it was incredibly draining at times, everything was manageable; in control. Perhaps it was the comfort I got talking to other cancer warriors, knowing I was not alone in my battle. For me, the ‘future’ was tomorrow or the next monthly treatment. My focus became narrow and short-term. While I did have long term goals and dreams, I realized just how important getting through one day at a time was. Too often we find ourselves so focused on some distant goal or dream that we forget to give today the proper focus and attention.
So as I settled in to the ‘comfort’ of these monthly cycles and became friends with many new people who, like me, were battling or had battled cancer. We shared war stories and developed a kind of ‘kinship’ in that we’d ‘been there, done that’. I remember a friend talking about how she battled post-treatment with a kind of PTSD. Every time she would start to get sick or feel a lump, she would panic at the thought of her cancer coming back. At that time (mid treatment) I couldn’t imagine myself in her shoes. Maybe I was naïve or over- confident, but in my mind, I just couldn’t imagine it happening to me.
Now here I am almost 3 years remission and fighting a new battle. Yup; you guessed it! The same fear that plagued my friend (and pretty much every cancer survivor ever) pops in and out of my life un-announced and un-invited. It’s kind of like that game “whack a mole”: I never know when or where it will pop up, but I try my hardest to smack it back down when it does!
I wish I could tell you the best way to deal with it, but I only know what helps me. When I feel myself going down that road, I speak up. I tell my wife that I am struggling and she is very good at praying with me or over me. She is the calm voice of reason that brings me great comfort. While it doesn’t make it totally go away, it helps me to accept and cope with the fact that I have been through a major life altering battle. My oncologist said that ‘remission’ doesn’t mean I’m ‘cured’ and that, someday, I will need treatment again. I wish that seed had never been planted, but it’s there and I need to deal with it. I hope and pray that, in time, these episodes will diminish, but in the meantime, narrowing my focus and learning to cope gets me back on track.

Blind sided

Blindsided

It’s been a while since I last blogged. The days and months have been filled with ‘busyness’ and adjusting to my new normal. Truth be told, not all days are smooth sailing on the waters that are ‘remission’. If you want to know what ‘normal’ is, go look at your washer or dryer. There’s a setting for that. If only it were that simple for humans. I’m learning that ‘normal’ is a moving target.
While I am keenly aware that there’s no ‘cure’ for leukemia, I would rather be blissfully unaware of that fact and go back to a ‘normal’ life. Most days are fine, even a bit blissful, but then there are days when I am blindsided. That big fat brain of mine starts throwing darts of doubt. Usually, this happens when I start feeling sick. “It’s just a bad cold” is what reasoning says, but then the dart of doubt comes flying in saying “your cancer could be coming back”. Some days the trigger can be something totally unrelated and the darts start flying. It is these times when I am SO GLAD my wife steps up with the reassuring voice of reason. She is the absolute BEST partner I could ever have hoped for! She is always the calm voice of reality, my safe place to hide. She’s kind of like a goalie against those darts. She’s become very good at deflecting them and calming my runaway horses. Thank you God for such an awesome gift!
None of this would be possible if I hadn’t learned to speak up and tell her when I’m struggling. You see, I am her protector. I always want to keep her from dealing with this kind of stress. I know she has a lot of her own to deal with and I never want to ‘burden’ her with my own. But the reality of it is, I can’t do it on my own. I need her! There is no room for my pride. Leaning on her when I am weak or struggling is what I am supposed to do! She is my partner. She wants to help me just as I want to help her! We have a partnership called marriage. That’s what’s supposed to happen in a healthy marriage.
Maybe holding it all in and keeping it to myself would be the ‘typical guy thing’ but cancer has taught me that I can’t be a ‘typical guy’ and keep all of this bottled up. I have learned to accept that fact that It is NOT a sign of weakness to ask for help. The reality is, there has been so many things out of my control in the last few years that I have had to rely on her (and my faith) to get me through it all.
I recently launched a project I have been working on for about 3 years. “The face of Cancer” is a motivational visual project involving many different cancer warriors I have photographed all holding a simple sign that reads: ‘I am the face of Cancer’. The portrait, combined with their personal story and positive words of what cancer taught them, inspires others battling cancer and even their loved ones. The project started out to be a gallery show but has morphed into a motivational talk (my personal story and how the project was born) followed by a 4 and a half minute slide show of all the cancer warriors.
Since launching the project, a Facebook page was added and “Wednesday Warrior” has become a very popular feature. Each Wednesday I share a cancer warriors’ story and their portrait. I am very pleased to see how popular it has become, and the comments have been very touching. Exactly what I had hoped ‘the face of cancer’ would accomplish is coming to fruition. However, I didn’t anticipate the impact publishing these stories would have on me. As moving and inspirational as these stories are, for me it is also poking a stick at my own wounds. Each week I am reminded of my own struggles as I battled leukemia just a few short years ago.
On the positive side, I am also reminded (weekly) of the fact that I am a survivor! I know if I keep my mind in the right place, I will overcome these negative effects and win the mental tug of war. So maybe being blindsided is just a crash course in dealing with momentary tragedies that can turn into valuable lessons? I think of the many ways I have been blind sided in my past. I never once liked it. It was never comfortable, but isn’t that when we have the opportunity to learn the most valuable lessons? Take that tragedy and cover it with hope and faith and see what happens!

 

The Face of Cancer

Today (5/26/19) I presented a very special project I had been working on since December 2015 called “The Face of Cancer”. It is a very powerful, positive, motivational project that started as (what I had hoped would be) a visual photography project to hang in art galleries or even Hospital waiting rooms and Oncology units. While I continue to work to that end, the project has morphed into a motivation slide show preceded by my personal story and how the project came about. After today’s presentation, a friend asked if I could post it to the blog site for those that couldn’t see and hear my story first hand. I liked the idea so, Here it is!

Caught between

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I watch my dad as he picks up a glass to take a drink. He focuses intently on his hands, needing both now to grasp the glass, as he carefully guides it to his mouth. Just as much care and focus are needed to return it to the table. When he leaves the table and heads for the recliner, his feet shuffle and his walker surrounds his body providing a safety net of sorts. He doesn’t really lean on it, but it’s there for the times he feels unstable. It takes him about a full minute to leave the table, cross the six feet or so and lower (line up and land) into the chair.

Over the past few years, my father’s health has taken a downward turn. Being in his mid-80’s I suppose it’s not all that surprising, yet it is concerning and sad in some sense. He was never health conscious. He ate what he wanted and, outside of working hard, he never did any kind of exercise. So here he is nearing the end of his time here on Earth, slowly fading away. He has suffered a series of TIA’s (mini strokes) and some brain bleeding (scans show numerous clots). He is almost always in atrial fib and his blood pressure is either high or low. This once strong and capable man was being reduced to a week and feeble shadow of his former self. His hands shake and simple tasks that were once done without thought or much effort have become difficult. It is painful for me to watch. I don’t want to remember him like this. I am selfish. I want to only remember him as the strong capable talented man that I believed could do anything! He is and was my Hero.

Living 600 miles apart, it could be easy for me to just ‘check out’ and not visit and watch him fade. I watched my brother do that and remember how painful it was. I fought like hell to not run away from it. In fact, my amazing wife’s love and support was what got me through. “You’re stronger then you think you are” she kept saying. This time, I am stronger. This time, I can relate to how he feels and respect his wish for it all to be over with. This time, I have a whole new perspective.

As you can imagine, he’s not very happy about his present state. He has always been the strong capable provider that never needed help. Now he needs help but is too proud to ask. This is a huge change for him and he’s struggling. In fact, he just wants it all over with. “I’m 87! How much longer do I really need to live?!” he states emphatically. He has (recently) decided to phase out all his med’s. and ‘let come what may’. He’s tired. He’s given up and he’s done.

In the last couple years, we (his children) have all tried to encourage him to fight through his neuropathy and dizzy spells, keep moving and working on strengthening his legs, but in reality, this is such a monumental task that it just isn’t a realistic goal. Why would he want to spend his remaining years working that hard and suffering through that much pain? Why would we ask him to? In a word: Selfishness. Let’s face it: We don’t want to lose our Dad. But aren’t we being selfish asking him to do all of this? When do we shift our focus to quality time and face the reality that he will be passing on and leaving this world?

Our spirits occupy this flesh and bones form for 80-100 years or so (if we’re ‘lucky’) but it was never meant to be permanent. Our time on Earth was, from birth, designed to be limited, Temporary. Having spent the better part of a year fighting cancer, I can say that I understand where my Dad is coming from. There were times throughout my battle when I felt close to death. Times where I felt, like my dad, weak, useless, feeble. I could very easily subscribe to the thoughts of slipping away from the worries of this life. It was easy to feel that shift to what really matters and quality of life comes into focus. I wasn’t afraid to ‘die’. There really was a sense of peace. The pressures of bills, job, strained relationships and the weather…a plethora of everyday life challenges just seemed to fade away. My thoughts turned to my loving wife and how would she manage if I passed on? How would my kids handle it or my parents and siblings? It was hard to see my sickness as temporary and that, one day I would be vibrant and (strongly) back on my feet.

I understand where my Dad is. His condition isn’t temporary like mine was. This is a very difficult transition for him. His faith is strong and he knows where he’s going when his time is up but he’s not happy. He is stuck. I respect the fact that he wants to move on. While I know I will miss him dearly, I want my focus to be on gratitude. I am grateful to have had all these years with him. I am grateful his soul will leave this tired old body, be free from pain and worry. His soul will move on to whatever is next. He’s ready to move on but he is stuck in between living a quality life and passing on. Is there no greater hell on Earth then that?

 

Sunday Afternoon Thoughts

Throughout this entire journey through cancer that Peter & I have been on we have tried, pretty successfully, to remain in a positive mindset. Of course there have been bumps along the way. As I sit here today on this beautiful summer day I’m thinking & reflecting on our journey. Actually what I’m really pondering is why…. why this, why us, why now, after all  of our difficult past journey’s that we traveled both separately & together. From the outside surface it is so easy to say… Man, that just is so wrong, so unfair, God, the Universe… just wow… but no… you always have to delve deeper. We are here to learn and grow.  This is a journey after all… As I sit here and think about this very large concept the answer is so clear in so many ways… Student of life; why this, why us, why now…?  Growth… to grow in every imaginable way…

Faith, trust, peace, understanding, knowledge, patience, confidence, humbleness, strength/fortitude, openmindedness, conviction, finding ourselves on the deepest of levels (primal), compassion, passion, educating ourselves, hope, desire, our voices, boundaries, safety, honor, what is important on a personal level… and what is not, and of course love.

Every bit of ourselves grew in these ways and more. Our journey while here on this planet, in this life, in this body for our soul is to grow & expand. We have grown in all these ways bonded together in love. As crazy as this sounds… I will be thankful for it all. My eyes are open. I’m still on the journey, but I have found myself in the deepest ways. Our journey here shapes us uniquely , pushes us…until we listen… until we grow.

Thank you for this journey God… the good, the bad & the ugly… The experience of life is rich indeed.

xoxo

 

 

Learn everything you can!!!

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In our journey through Cancer, Peter & I both felt very compelled to share with you all. Some people while battling illness, disease, depression choose to go inward and become silent, some choose to become angry, some people just don’t know what to do… others like us find our voices. We wanted to share our story not because we have a desire to share personal stuff with the world but because we both feel deeply compelled to reach out a hand to someone… anyone in need. The journey through a deadly disease is mind boggling & overwhelming, its heartbreaking and soulful… in the deepest sense a spiritual journey into learning deeply who you are and what makes you tick. There are periods in many people’s life that are called “ah ha” moments. It may sound strange to some.. but the journey inspires a deeper understanding, a peace amid the storm. Peter’s brother Steve used to say; “ You just do the next thing”. There are many next things that I hoped to help readers know and understand because the journey through has many pop up surprises.

-Finding a doctor that not only listens but hears, understands, is patient with questions and truly cares enough never to let you feel like a number is your #1 priority!!! If you can’t click check next to each one of those … you are probably not sitting with the right doctor.

– There is no such thing as routine cancer! Every type of cancer has different biological makeups of proteins, deletions & even shifts to chromosomes. Don’t settle with a routine treatment. There are many incredible new cutting edge therapies available for many types of cancer!! Connect with cancer support groups to find where all of the newest treatments for your type of cancer are happening!! Chemo used to be the only option.. but it is NOT the only option any more!! Do your research!!!!

– Advocate advocate ADVOCATE for your self, your health, your care!!! Did I mention advocate? Doctors are practicing medicine.. key word practicing… ask questions, research, you want the smartest, brightest & one open to the newest ideas & forms of treatment.

– Hospitals have patient advocates, ask for one!! A patient advocate helps patients & their families negotiate the complicated path of coverage & loopholes as well as outside services to help with co-pays, travel, lodging & assistance expenses. Many of them will actually do all the correspondence with insurance companies taking that off your plate.

– Connect with a support group in your area. We were led to LLS ( Leukemia & Lymphoma Society), they were incredibly helpful!! They helped us wade through medical jargon, financial assistance with medicines, expenses, support. They can even connect you to patient volunteers going through the same treatments with the same disease, just to talk to so you know you are not alone. We also found out that had we not been at a hospital that had a clinical trial for Peter to take part in they would have found out where one was. This is what these groups do, full time… look for ways to help YOU!!!!

– Insurance.. ugh my head… you will spend more time on the phone fighting with them for coverage, for messed up billing, for approvals than you will anything else!! I’m not kidding, and I’m so sorry!! The last thing in the world anyone with cancer or anyone who loves somebody with cancer should have to do is this…. but brace yourself!!! Health insurance in this country is a horrible mess!! Greed is incredible.. and they simply don’t care that you are facing life or death… all they care about is their bottom line.. truly.

– That being said.. just know, and in however you have to come to a place of peace about it; you will be in debt for the rest of your life… it is what it is. It sucks but you can not let it consume you!

– People won’t be able to handle the truths. This includes family, friends, acquaintances, strangers..Don’t keep banging on closed doors, let it go.

– But that being said… incredible people will appear, angels will surround you. You will learn that family is not always blood.. but who stands with you, holding you up is.

-You will find a deep strength, peace, vision, quest, moxie, power, resolution, fire, soulfulness & spiritual journey in all of it.

The day you walk out of treatment ( even as a caregiver), life does not magically go back to “normal”… because there is a whole new yet to be discovered “normal”. There are many new and unexpected twists and turns along that road as well. I think people who have never been through personally ( in whatever capacity.. patient, caregiver etc) can not even begin to understand the enormity of that part of the journey any more than they can truly understand the journey itself…. Months of goal oriented deadlines and dates in a life threatening situation becomes your life… and then when that part of the journey ends… you have been forever changed in every possible imaginable way. Who you are as a person is never put back exactly the same way. Your journey has tacked life & death, spirituality, relationships, what is important in this life and what truly is not. You can’t go backwards. Some people can’t move forward, they honestly can’t… they are shell shocked.. PTSD is REAL!!!! Every ache, every pain, every sniffle could be a reoccurrence ( in the mind of a survivor or caregiver). In Peter’s case his doctor says his cancer will need to be treated again someday. We have made many changes in our life in the belief that maybe that won’t be the case. It’s always there just lingering. For those of us that strive to move forward… it is a whole part of the journey that isn’t discussed enough. We feel like our perceptions & views are wider, there is a deeper understanding in knowing that nothing is guaranteed. Every day is truly an incredible gift. What are you going to do with that gift? It’s kind of hitting the re-set button in life. PC & AC (pre cancer & after cancer)… Life as you once knew it is forever changed… but that doesn’t mean it has to be a bad change. For many survivors or caregivers it marks the beginning of a directional life shift in every area in life. Striving for peace at whatever the cost. A re-evaluation of where you were versus where you now are. Jobs may change, status may change, people may need to come or go from your life, many things in life may need to be dropped and others picked up, that voice in your gut gets louder. Maybe that treadmill in life isn’t what it’s all supposed to be about. This experience has taught me so much. I know my path now clearly is one of following passions and being at peace. Being a caregiver through a cancer journey is so much. It’s so important to take care of your own self too. It’s easy not to. It’s easy to become overwhelmed and just curl up, or babble on incoherently. Peter was very clear about the need for me to find my space to breathe & heal also. He needed time to go inward and work on his own healing, as did I. Reiki was a Godsend for sure for me. Today I am blessed to be able to work as a volunteer one day a week in a hospital near us sharing Reiki with patients, caregivers and staff. I love going in to serve others in need. The joy that I receive from helping & serving others is beyond beautiful.
We both have had many people contact us through this blog asking us for guidance or even a listening ear, we are both humbled and honored to help in any way we can. In life, these times under fire refine us, define us and make each one of our lives unique. Everyone has something going on in their life. Be kind to each other. Sometimes the battle isn’t visible from the outside ( Peter didn’t lose his hair during treatment, he didn’t look incredibly sick most days), depression isn’t visible, many illnesses are not visible. Life is a journey, we are all just walking each other home… Never hesitate to reach out if you need a hand!! xo

Reflections: What sticks.

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Our greatest (life) teacher has got to be adversity or traumatic events. How often do we hear Actors, Athletes or musicians talk about their road to fame which includes detailed stories of child abuse, abject poverty or a serious life threatening trauma? It is these very events that can motivate or paralyze. There comes a point in their life where they choose which it will be: push through and beat the odds or let it consume them.

Fighting stage 4 Chronic Lymphocytic Leukemia was a tough life teacher for me. Toughest battle to date. There were days when I wasn’t sure I would ever have a life even close to what I had pre-treatment. I was physically and emotionally drained. I had a very physically demanding job that I struggled to even get through a half days work. I enjoyed an active social life but couldn’t muster much energy past dinner time. Added to that was emotional battles. While I expected the physical battles, the emotional ones were unexpected and unpredictable.

Soon after diagnosis was the first punch in the stomach. I quickly realized who my real friends were. Even some family members fell silent and grew distant. I don’t know what was going on in their lives, but I’m sure they felt they had valid reasons. I know myself, in the past, I had felt the urge to pull away from my brother in his final days. I didn’t want to see him suffering like that. I didn’t want my last memory of time with him to be like that. I wanted to selfishly hold on to the good times, the laughs we had together. To remember his lifeless, frail body in a hospital bed… no. Didn’t want or need that visual. With much encouragement from my wife, I didn’t run. I stayed. I offset that visual with the memory of holding his hand and kissing his head one last time. I remember all we exchanged without words in those final moments.

I can’t in clear conscious really fault those that pulled away and fell silent. I don’t mean to sound vindictive or spiteful when I say, I remember them and what they did or didn’t do. I had expectations that were, surprisingly, not met. In contrast, there were friends and new friends that really came into our lives with such love and support. I remember them too.

Although it’s been a few years now, these life lessons have stuck with me. Some who left in my time of need for support have come quietly back in now that the dust has settled. While I welcome them, I see them in a much different light knowing where their boundaries lay.

My adult children are another story. I have not spoken publically about their silence and lack of support in my battle, but the emptiness I feel even to this day is worse then the pain of the cancer treatments. My own flesh and blood have been estranged for several years now. I have reached out to them on several occasions, even brought my daughter to one of my last infusions thinking it might spark a reconciliation or re-connection.  What is my lesson here? What is this pain supposed to teach me?

It would seem that I still have more questions then answers.

Dawn

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The one year anniversary of my last immunotherapy treatment for Leukemia is fast approaching. As many of you following this blog know, remission hasn’t exactly been a cake walk for me! A month and a half after my last treatment and I was feeling better than I had in years! I had strength and stamina to work a 40 hour week and still have energy to do something social with my wife on any given evening. This was short lived and I have struggled to reach that plateau since.

Several trips to my Oncologist and numerous tests later, no culprit has been found. In fact, my blood work looks excellent and the amount of CLL in my bone morrow has decreased from 3% last September (when I finished treatment) to only two tenths of a percent!!

I was elated and relieved to see such great numbers and to see that, even though treatment ended, my body is still killing off the cancer cells! My immune system is back to working at full tilt! Perhaps, I reasoned, my body is still working hard to rid me of the cancer cells and regenerate new healthy cells? Could this be the culprit?

My Oncologist remarked that some cancer patients experience extreme fatigue that never goes away! (NOT what I wanted to hear!) He prescribed me Ritalin for the fatigue. Apparently this works in some cancer patients. I was very reluctant to try it and decided to give some natural supplements a try first. I started taking Ginseng and green tea extract but that just made me feel crappy. I tried the green tea extract alone…ditto. So after a couple weeks of experimenting I gave the Ritalin a try.

At first, I took only one in the morning with breakfast. It seemed to work pretty good for most of the day, but then I crashed pretty hard in the mid -afternoon. No matter what I was doing, I suddenly felt the urge to lie down and go to sleep! After a few days I stepped up to taking a second one in the afternoon around the time the crash started and this worked pretty good, but then I had trouble sleeping! On day 5 I decided to go back to just one a day but took it a little later in the morning. About 30 minutes after taking it I began to have the shakes and get dizzy. That marked the end of the Ritalin trial!

About a week prior to starting the Ritalin, I watched a great documentary on food called “Forks over Knives”. It was a real eye opener and one that had me making more changes to my diet. My wife and I took another step in eating cleaner and healthier. We cut back on dairy meats and sweets replacing them with more fruits and veggies (and we’ll get back to juicing too). It wasn’t too difficult as we had been doing some of that already.

After the Ritalin debacle, altering my diet a little more drastically coupled with taking just the ginseng supplement in the morning seems to have been the key. I am happy to report that after a couple weeks the fatigue level has dropped to a manageable level and I have even felt good enough to do some hiking! Will this last? I believe so!

Eating clean and healthy is key for everyone wanting to stay healthy and have energy and vitality. My wife has always stressed this to me. When she first moved in, I had to fire all my kitchen help. Mrs. Stouffer, Marie Calender, P.F. Changs and the Gorton’s fisherman….gone. She started me on the path to eating better. When we’re young, we can get away with poor dietary choices and not notice the negative effects. But when we are older and battling diseases like cancer, I believe it becomes absolutely crucial to be more vigilant about our dietary choices!

Sleep is also key for me. I try not to stay up late (past 10) and I haven’t used an alarm clock in a couple years unless I needed to get up early for an appointment or catch a plane. I let my body get the sleep it needs.

Fighting cancer has made me reset my mindset. I believe the medications and treatments have set my body back at zero as well. My thought process is that now is the best time for me to re train my taste buds and stomach to accept a new and healthier way of eating. Food is my medicine and my fuel. Yes I will still have my chocolate, but in much smaller quantities and frequencies. Same goes for meats. I will eat only organic products and no GMO’s! I believe in moderation, after all, what’s the point of life if you don’t treat yourself once in a while?

Random thought that popped in my head the other day: “No death is tragic unless the life lived was unfulfilling.”

Just Beyond Grasp

It’s been a long time since I wrote. Mostly, honestly because sometimes you just need to shut down and regroup a bit. When Peter was diagnosed with cancer our entire world just turned upside down in many ways. Fresh off getting married & losing his brother Steve we just dug in. When you hear the words “ you have cancer” ( for yourself or a loved one), a switch flips and stays flipped. Days and nights all I did was research everything I could find on CLL. Deletions, proteins, chains, life expectancy, treatment options, herbal options, holistic medicine, chemo, Chemo cocktails, clinical trials… I armed myself with everything I could to be the best caretaker & support system I could be. We focused on answers. After our second opinion at OSUCCC, we focused on coordinating and researching the realistic treatment options for Peter. When the treatment that was a “good fit” for his particular type of CLL presented itself, we researched more, through panic ( over possible side effects) and the positive hopes that helping others by advancing research was the right fit. It was scary.. I mean down to your core scary. We kept our eye on the prize. Every 28 days we focused on the healing and wiping out of cancer in his body. There were some real hard and really low periods during that time. After his last infusion August 30th, our focus was waiting to hear the results of the study on Peter’s cancer. When he began this journey 73-78% of his B cell lymphocytes were malignant. Upon thorough testing one month out from his final infusion only 3% of his B cells were malignant. Amazing!! Wonderful success!!! Then off we went with many hugs and kisses from the entire unit, grateful for the research doctors who’s hard work and diligence developed this trial drug that gave Peter such amazing results. It was exciting, yet terrifying hearing goodbye, we will see you in one year.. you are in a great remission!!! Wait, how do you adjust and go back to normal… what is normal?? When your whole life has been research, caution, appointments for over a year.. what is normal anymore?? Peter’s oncologist said go live.. you’re free… but are you? Peter felt amazing for awhile. He had more energy than he had in years. We talked again about hopes and dreams because they were right there.. the golden ring on the merry go round of life. Some days he didn’t feel strong.. we expect that. His body has been through the biggest battle. There is going to be a recovery process of course. In December he began feeling really exhausted. Anyone who has ever had cancer talks about the utter fatigue and exhaustion that is indescribable. His blood work looked great.. spot on!!! His immune system was still a bit compromised so he was given an IVIG infusion to give him a bit of a pop. It really didn’t. Since December he has been going backwards. Since February seriously going downhill consistently. For awhile he was able to work 7-8 hour days, 35-40 hour weeks… now if he makes a 20-25 hour week it’s a good week. It probably wouldn’t be unexpected to have some rough times and yet there were some really feeling great times in the beginning. You start to wonder about everything. Those 3% of his B cells ( still looking great on his blood work), every twinge. When you talk to people they ask about depression. Is Peter depressed? I live with him (and watch him like a hawk), and love him beyond words and measure… he’s not depressed ( other than not being able to get up and go to work like he would like to) he is utterly fatigued and weak. I do believe PTSD is very real for post treatment cancer patients… we certainly get it. Normal isn’t normal anymore, where do you go back to when your brain knows so much reality. Our faith is very strong… our belief in positivity is strong… we believe that complete healing will be achieved at some point in the very near future. Nothing else makes sense. Enduring through his brother Steve’s cancer journey, (Peter learning all the things he did… unintentionally, about the battle & journey), the only thing that makes sense is that he can and will be healed completely… and yet here we are today scared. Trying to focus every ounce of ourselves on faith, positivity and healing and again we both feel scared. He has been saying for 2 months he feels like he’s going backwards, that something is wrong. This is what his heart is telling him. I can’t help him with those feelings. He knows his body well, I trust him and his knowledge of himself. He looks so tired.. and there is nothing I can do to help. I can give him Reiki, and feed him good but nothing seems to boost him. He is battling nausea now which he has never had before. He is out of breath frequently and he looks exhausted. No amount of rest helps… and pushing himself doesn’t either. His oncologist told him to exercise, so we joined the gym (even though he works hard physically every day at work). If he rides a stationary bike for 20 minutes he is out flat for a couple days. It’s a mystery. His oncologist has now set up an appointment for him tomorrow, 4 months earlier than expected. More testing, CT scans… are we missing something?? Peter as I recall was #22 in a second round of a clinical trial…. there isn’t really a whole lot of trial history to go back on and look. Is there something with the drug that has caused something else? Is there stuff yet to be discovered? Does Peter have regrets on his decision.. absolutely not … chemo as we were told by his oncologist is now NOT the preferable treatment for his particular type of cancer.. it’s like batting the hornets nest and causes all sorts of mutations and deletions that make treatment much more challenging and have a much lessor success rate. So tomorrow he will go through a battery of tests.. will we get answers? We don’t know. We hope for answers… at least they make things more tangible. Every single thing in our lives has changed since Peter’s diagnosis… cancer does that in an instant. You just hold each other closer, your loved ones closer. Our faith and belief guides us to fully believe that nothing is without reason… maybe not right now.. but eventually all the dots line up. It makes you delve deeper into what is the meaning of it all.. what is the lesson? A test of faith, patience, endurance, love, compassion, peace.. for Peter, myself, any one or many people connected to him or us. The answers are just beyond grasp at the moment….

Patience

Dubrovnik

I’ve never been very good when it comes to the act of patience. I have always set the bar high for myself and have often accomplished tasks that I was told were beyond my capabilities. It was a great feeling when I was successful and a great source of encouragement.

But even when I would fail, I never spent much time on negatives or bogged down with worry about the problem. Instead I would choose to focus my energy on finding the solution or the positive side of whatever the problem was. Perhaps I was offsetting patience with tenacity?

I have spent most of the last 2 years of my life trying to achieve the highest goal ever. The bar is very high. Cancer is throwing everything at me. There are more than enough set- backs and negative side effects to knock me down or steal my tenacity. Now I replace my patience with persistence. I have never dealt with this many ‘down days’ before. I find it very challenging.

The realities of having a chronic life-threatening disease can be enough some days to make one’s head spin. There is no cure (yet) for my cancer, but I continue to fight it with all I have. With the help of new immunotherapy treatments in clinical trials, my CLL has been knocked down to nearly undetectable amounts. The new “bar to clear” is getting my energy back and resuming life at a new normal. I know I’ll never be the same as I was before treatment, but I’m feeling like I’ve aged about 10-15 years.

I am thankful that I am alive. I survived! I fought cancer and am still alive today to talk about it! A lot of people don’t get that chance. I try to focus on this fact and not get depressed when I can’t muster the energy to go to work. But facts being facts, the financial impact of missing about 6 months of work coupled with things that my health insurance didn’t cover doesn’t go away. I need to have my strength back so I can work to pay my bills and even make some extra to get caught up. This is proving to be the tougher battle for me psychologically.

While I refuse to accept this “new normal”, I struggle to find a solution. All my Doctors can tell me is to exercise and work through it. They can’t tell me about how long this could last, or if it truly is my ‘new normal’. Imagine pushing yourself so hard physically that you became nauseated? Working when your muscles ache and everything you do takes 3 times the effort and leaves you sapped? This is how I have felt most days for the last 6 weeks! It’s a different kind of tired. My mind can be pretty alert and sharp, but my body doesn’t want to move. Believe me when I say that I have tried every homeopathic remedy there is. Oils, supplements, diet, exercise, Reiki therapy… everything.

So now I wait… (im)Patiently…