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….
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…
Everything we experience in life, prepares us for the next event, or, what I like to call, ‘level’. When we are young, school is our life. School prepares us for the next level of life: Adulthood. After our schooling we enter the level of starting a career, finding a partner and perhaps starting a family. Our life becomes about first houses and marriage, First child and experiencing all the joys and struggles along the way as we carve our niche in the world. As this ‘level’ approaches the next, we find ourselves going to weddings as our nieces and nephews start their next level. Peppered among these celebrations of love and fresh starts are the funerals for Grandparents or sudden tragic untimely deaths of friends or relatives. There may be events that have us scratching our heads wondering ‘why’ or ‘how’, but ultimately, they are pieces of a bigger puzzle; Preparation for the next ‘level’ as no level is meant to be permanent.
When I tell people that Cancer was a gift, they look at me like I’ve lost all sense of reality. The word ‘Cancer’ strikes fear in hearts and minds of the lives it touches either directly or indirectly. June 16, 2015 I felt that fear as the doctor told me my diagnosis. All of the air was suddenly sucked out of the room and my ears strained to hear anything else over the buzzing sound. Like listening to a flat, static riddled AM radio station I heard his voice but couldn’t comprehend anything he was saying. With great concentration and effort, I managed to form a question or two and hoped the answers would punch through the static.
I will be the first to admit: Cancer destroys lives. If you want to focus on the negative effects, there’s plenty associated with cancer. I wasn’t able to look past much of that for a while. After all, it was only about 3 months -time since I lost my brother to cancer. His box of ashes sat in my house next to a candle we lit every night! There I was pondering the ‘why’ and ‘how’ of it all. To have been diagnosed with cancer was bad enough but to be diagnosed with the same cancer that took my brother was the most devastating news I could have received!
One thing I have learned in recent years is that even in our most difficult or devastating mental, emotional or spiritual times, there is always something good to come from it. The proverbial ‘silver lining’ is real. Personal growth never happens when we’re nice and comfy. Just when we are feeling comfy and happy with our lives is usually when the train comes off the tracks. June 16, 2015 is when my train derailed. 5 months after marrying my soulmate and experiencing one of the happiest times in my life and 3 short months after she held me up (sometimes literally) as I grieved the loss of my brother. Seeing a pattern yet? Pieces of the puzzle coming together…
Nothing is coincidental. Every interaction we have with others is beneficial for one or both parties. I have often pondered out loud with my wife how different things would probably be had we not met and married. How would I have handled my brother’s death? How would I have coped with my cancer? Would I have even gotten the routine checkup that caught it? These are all pieces of the puzzle that, separately, don’t make a whole lot of sense, but together make a bigger picture in focus.
Keeping this in mind, I approached cancer with my focus on the silver lining and looking for the lessons to prepare me for the next level. Assuming that level is the final level, aside from ‘getting our affairs in order’, we don’t need any training. Death is a natural occurrence that we will all experience. Coping with losing someone close cannot be ‘self-taught’ through our own death, so the lesson can’t be about death. As shocking as it may sound, cancer isn’t about death; it’s about LIFE!
Let me say that again: Cancer teaches us about life! Talk to anyone who has had a near death experience and I’m sure they will agree that their focus drastically changed. The list of priorities in life was definitely rearranged and shortened. Talk to cancer survivors or even those fighting cancer and they will say the same thing. My approach to fighting cancer is one of maximizing what I can learn about life from such an ugly enemy. After all, this is preparation for the next level and I want to be ready!
“Once you learn to fly, you’ll never fear falling”. This great line came to me one day while driving to work. I was driving by a Blue Heron nesting area and spotted a nest perched way up on the top of a very large sycamore tree. I felt myself shutter at the thought of falling from that distance. My mind was very quick this morning and I soon found myself reckoning that birds probably are not born with the fear of falling and thus, not afraid of heights. My deep ponderings quickly jumped to how you could apply the same logic from my opening statement to many different things in our own lives.
Last year I got a bit of a taste of death. I cheated death thanks to modern medicine and have staved off the cancer demon for an unknown length of time. As good as my remission is right now, my oncologist gently reminded me that I wasn’t cured (there is no cure for any kind of cancer, only remission) and that new target specific medicines are coming out pretty quickly. The “toolbox” would be pretty full whenever my Leukemia rears its ugly head again.
So now I ‘learn to fly’ with my new set of wings. I must trust that whatever the future holds, it will be accepted and dealt with. I must Live my life free from the fear of “if” and “when”… focus on the flight and not fear falling.
As good as I’ve been feeling as of late, that’s not too hard to do. But then there are the bad days when I seem to get run down and tired doing only about half of what I knew I could do in the past. I can have a strong week or two where I feel like my old self and then…BAM! I hit the wall and just getting out of bed in the morning is a struggle. Pacing myself and being patient has never been my strong suit. I spend time talking to myself and reminding myself of all that I’ve been through this past year. After all, my body fought a major battle and needs some time to get back to ‘normal’.
Another aspect of all of this is my mental state. Near death experiences can be very traumatic. Dealing with my own health scare is daunting enough, but my wife reminded me that I never really had time to grieve the loss of my brother Steve before diving right into my own battle. It was only 3 months after watching my brother take his last breaths and succumb to his hard fought battle with Leukemia that I was told I had the same cancer!
Now that the dust from my own battle is settling, I am finding that the feeling of his loss is close to the surface. I have dreams about him. Sights and sounds pop up in my daily life that shift me back to his bedside as his frail body fought for every breath. As I come out of a year of treatments in a really good remission, I feel a bit of guilt mixed with a lot of sadness. Steve was just a few years too late for these new targeted immunotherapies. If I subscribe to this line of thinking, I can feel guilty walking out of the cancer unit leaving behind people I befriended who are still struggling with their treatments. Compared to some of them, I breezed through! My cancer was ‘easy’ to knock down! But in all reality, there is no ‘easy’ cancer. Cancer is a devastating disease that is very unpredictable and can change (mutate) at any given moment and become an aggressive beast that steals life.
Countless times I have longed to call Steve and discuss my treatment struggles and victories. We would trade stories of our bad days as well as our good. We would trade stories of things that happened at our last treatment. We were very much alike in that we always like to make people laugh. Life can never be too serious to be taken too seriously.
I remember sitting nervously in the waiting area before a painful bone marrow aspiration. The memory of the very first one I’d had a couple months prior was all too fresh in my head. All of the sudden, funny words to a song popped in my head. It was Steve easing my fears. We used to change words to popular songs so what I heard this day was so inappropriate that I started chuckling loud enough for my wife to hear. Remember the song Cheap trick did called ‘My Cherona’? Well, the version that came out of my head was “M,m,m,myeloma”….so inappropriate, yet so funny.
I guess if I analyze openly all that I am feeling, I would have to say there is some anger in there as well. I am angry and hurt that I can’t talk to him. I know he is close and, at times, I have felt his presence (like in the story above). I know he would be proud of me and how well I’ve done in my battle with cancer. So I will ‘fly’ with that and not ‘fall’ into missing him every day…and I won’t ‘fall’ into the thoughts of ‘is the cancer coming back?’ no, I will live, fly and soar!
On August 29, 2016 Cancer became part of my past. My last infusion (on that day) marked the shift from being a cancer patient to a former cancer patient and, good lord willing, cancer will stay in my past and never be part of my ‘present’ ever again! On August 29 I entered the remission phase. No more monthly 2 hour early morning drives to Columbus for infusions. No more crazy infusion day socks. No more toasted pb&j made by a wonderful volunteer. No more white wrist bands with my info on it. No more shuffling around the unit with IV pole in tow looking for familiar faces to visit with… The end has come and a new normal gets sorted out.
I will miss all the great nurses, patients and volunteer’s that we have met over this past year. We came in on that first day full of nerves and fear of the unknown. We expected to find a negative vibe hanging over a unit full of sickly people fighting for their life; we found it to be very much the opposite! It’s been one of the nicest places I hated to have to visit!
In one big way, I am ecstatic to be saying good bye to that place, but in another, there is the sadness of missing the friends we made. Sure, I’ll be going back there for checkups, but it will be in another part of the hospital. I won’t be spending all day there either. I may have to stop in and say hi (and get a toasted pb&j J) but eventually I will no longer need to go there and life will go on.
I won’t miss the envelope fat with 8 or 9 itemized pages of bills that comes in the mail. All the medical terminology that we’ve learned this past year or so almost makes me feel as though I had taken a college course. I guess, in a way, it was kind of like a ‘crash course’ in ‘Cancer 101’. I still say that I learned more about life this past year than anything else. Human nature would most likely have been my major. I see the stages people go through when diagnosed with cancer or any other serious life threatening event. I read their stories on facebook or first-hand face to face. I recognize all the different levels of denial and then, ultimately, acceptance.
I am always happy to help and people often do turn to me or Heather with cancer questions. So as I enter the remission phase, I am eager to learn more and pass what I learn along to others. I recognize this as one of my purposes in life right now, so I embrace it.
My wife has a whole different perspective. For her role as primary caregiver, she has had the unenviable position in the passenger seat while I went through severe reactions to my first infusion. She sat, helpless, only being able to provide a comforting touch and words of encouragement (which did help greatly). She has been my rock, the most positive person I know, keeping her cool pretty well when all hell seemed to be breaking loose! I would never have wanted our roles to be reversed. I’m not sure I could’ve been as solid for her.
So as we wrap things up, she has her own set of worries and questions about the future….
Everything Peter said… 🙂
2 weeks ago Peter had his last infusion. Our plan was to get a new blog out prior to the BIG day… but to be honest, it’s been a bit of a struggle for me. It’s really exciting coming to the end of this clinical trial. Peter did it!! What a celebration!!!! There were for sure some really rough patches, especially this winter when he was having a reaction to one of the drugs. Today his blood work looks great!! His doctor feels he is in a remission!!! The other night we were comparing his blood work from last summer to his most recent… unbelievable!!! At the beginning of this trial there were so many what ifs, it was REALLY scary!! A trial means that really, nobody knows a whole lot about anything, every body is different. How brave!!! Every new step was a step forward in faith while also in remembrance of Steve who had only passed months before. Peter was so clear in his head when he chose this trial because he knew that the past treatments not only had a low percentage survival rate, but there were so many possible complications. I stood with him 100%…. but this is so real. Several times in the past year I had to cheer him on to keep going; there has been a HUGE battle happening inside his body. Bad malignant cells being killed, Peters body working 24/7 to get rid of the toxic cancerous waste. Once the drug that caused his awful side effects was taken out of the equation he did much better, still utter cancerous exhaustion (which if you talk with any patient or survivor, they will tell you it is an exhaustion that can’t be put into words or compared with anything else).. but marked improvement. Though he didn’t have any form of chemo for his treatment, he does have some “chemo brain” like side effects. There are still days where he can’t pull himself together, but they seem much less frequent now. No matter what anyone says; cancer breaks you in every way imaginable… mentally, physically, financially. BUT…Hoooray!!! He’s done!!! Wait… are you sure? No really.. for reals?? From my care taking perspective there is a whole new set of worries. He’s responded so great, but we’ve been told there isn’t a complete cure for his CLL. Eventually his numbers will climb into the bad zone again, he may or may not become symptomatic, and then we are back to square one.. again. The clinical trial drug will be off the table next time, because he’s already used it. This means something new, another possible terrifying for us both drug reaction to a new infusion drug. It happened so fast, so severe… I put on a brave face for Peter… but it was ‘I can’t breathe’ terrifying feeling so helpless. In those moments I truly feared I was going to lose him… and I couldn’t breathe. I understand that his body may have “adapted” to this particular drug, it may not work again, yet I wish he could just “tune up” with the infusion he has been on every couple months. I guess that is not an option. His Dr says there is a tool box with new tools arriving all the time for the fight on CLL. Will we always have to fight this monster?? Seriously?!?! We only just found each other, we just wanted to live a life full of adventure, cameras, laughter & lots of love for the next 50 years. I suppose some might grimace and throw in the towel… but that isn’t us.!!! OK, so adventure it is.. just not quite what we imagined, cameras check, laughter oh yes check, love, every day more than we could imagine in a whole lifetime, and every day more love and respect for this beautiful husband of mine!!! Even with all the love and positive energy; some days… life is just heavy. Peter has mentioned here in these blogs about levels of acceptance along the way, this part is no different. Each new level starts out scary, or frustrating, or numbing, and then eventually we each find our way to acceptance. This is just how it is now. Sometimes we just need to shut out the world and just hold on to each other so tightly, and simply catch our breath. We will know more in about 6 weeks. He will have all of his clinical trial exit tests at the end of this month. CT scans, bone marrow tests, more in depth blood work, all so as his Dr says they can “stage him”. A cold hard slap in the face.. stage him. Is this cancer still lurking in his body waiting to strike again? Good Lord to be able to simply breathe knowing it’s gone… but reality say’s it’s not completely gone. To have faith, and hold on to hope becomes a full time job that requires constant prayer, meditation, walks, and talks with Peter. His perspectives are truly beautiful and I am so humbled to know and love this man. There is nothing in the world I wouldn’t do for him. So we celebrate this completion… and search for peace at the same time. I told Peter’s doctor on the day we met him, we spent this lifetime without each other, we have just found each other, we just got married a few months ago, please give us 50 years, because even that isn’t enough. He promised to give it all he could to give us 50 years.. and I am holding onto that!!!
As I near the end of my yearlong clinical trial treatment for my CLL, I find myself reflecting a lot on the events over this past year or so. I have met a lot of people, fellow warriors fighting alongside me. They all shared with me their own horror stories of diagnosis and the road that brought them to this same treatment center. Most have similar stories to mine where their (trusted) doctor misdiagnosed them several times until it was nearly too late! Even as I see their victories over cancer, I know that cancer is not easily beat and often rears its ugly head at a later date and, often, in a different form.
Some of those I have met are on their second, third or even fourth bout with the beast! I’ve read the statistics and while great strides in new treatments are emerging, my brain can’t keep from thinking about the obvious: Some of those great warriors I’ve come to know and feel close to, will not make it.
These thoughts keep me from getting ‘too close’ with them. Yes, we exchange phone numbers and email addresses, but have yet to make any contact outside of the infusion unit. I imagine it is much the same with the staff. I am sure that if they work there long enough, they will see many who don’t make it. I don’t think the treatment center has a specific policy on patient/staff relationships, but would they really need to state the obvious? I think it’s one of those ‘unspoken policies’ they all pretty much adhere to, much like I do.
Probably the number one thing this past year has taught me is this: It’s okay to recognize and even embrace the hard facts. Denial is one way to deal with something that is overwhelming, but eventually it must be dealt with. By recognizing and embracing these sobering, cold hard facts, I can see the mountain I must climb and concentrate on my climbing path. The fog is lifted and I am able to see all the other souls there. They reach out to me offering a hand to help me over the next obstacle. In turn, I begin to reach out to others and together, we climb. Together we make the best of a crappy situation and enjoy the views along the climb.
My mountain started with the great joy of getting married followed by the great pain of losing my brother. Not even a month later I learned that one of my closest friends was battling breast cancer. 2 months later, I was diagnosed…I had no time to enjoy being a newlywed. I had no time to grieve the loss of my brother or comfort my best friend. So many huge emotion filled events were getting stacked one upon another. My children pulled away and fell silent (still trying to absorb my new bride played a part I’m sure) some friends and relatives pulled away, but others stepped forward and held me up.
We all have battles that are devastating. Some keep them very private while others share their wounds. Sharing my battle publicly was a choice my wife and I made after much discussion and soul searching. While parts of my battle are still private, the bulk of it is out there in hopes that it will help others. I know how much my brother’s battle has helped me. He wasn’t as public about it, but I am confident he helped others even if they never acknowledge it publically. Much of what my brother taught me was not immediately recognized or appreciated. God how I wish he was still alive today to talk to! I can’t tell you the number of times I have wanted to call him and lean on him. He was always a good resource for me when it came to life’s little tragedies. I admired how he embraced his harsh realities. Nearly 30 years earlier, he beat his drug addiction and alcoholism by acknowledging it, then planning the next step away from that lifestyle. Perhaps that’s what gave him the strength to fight such a valiant fight with CLL? His setbacks never pushed him off the trail. Steve was always focused on the next foothold even at the end when that foothold was the one that took him to heaven… He knew it was time. He embraced and comforted all who were there to comfort him! I am just so in awe of his grace and dignity right to his last breath!
So as the end of treatment nears, I realize that that end is another beginning. My journey will not end, but rather evolve into the next chapter. I will always have my sensors out scanning for the possible return of cancer, but it will not be my focus. I will not let cancer steal my mind, but rather submerge my mind into life’s adventures that lay ahead. The mountain will flatten and the path will be smoother and wider. I will live with a deeper knowledge of life and death, love and faith and never take a single day for granted.
Today’s blog is a true shoot from the hip. Cancer sucks. Period…. Woke up this morning to the sad heart breaking news that heaven gained another new angel.. Jack Rollins. #Jackrollinsjourney #jackstrong . Cancer has taken another. Sweet 5 year old Jack, who along with Hines (#hopeforhines ) has been at the top of our prayer list for a little bit over a year when we were enlightened. Cancer knows no boundaries.. leaves nobody out. No race, no age, rich or poor, nobody is exempt. Jack has fought an adult warriors battle… he lived as much as he could in his 5 years… He was diagnosed at 2. Hospital to hospital… treatment to treatment… needles, tests, drugs…we all prayed for a miracle. Neuroblastoma. His family’s whole life and whole mission and daily drive was to help him survive another day. The lessons he taught everyone who met him, knew him.. or even of him are countless. He was a warrior beyond words. Parents are never supposed to bury a child… there can’t be a more cruel twist. How does a family who has spent years fighting for a child’s life ever rebuild… let alone go on. This has been the daily family life. How do you possibly pick up from here??? Today has been a day of tears and sadness for Peter & I. For myself, a wound opened…My brother lost his 5 1/2 month old son one day when he took a nap, he never woke up… SIDS (sudden infant death syndrome). No answers…Every single day my brother is my hero… he gets up out of bed and goes on… and I don’t know how… or if I ever could…It’s been almost 10 years, and today, the scab and that pain came right back… all of it…There is so much I don’t even understand in this life…So many questions I have. I don’t understand any of it… but especially children.
Today our buddy Hines is doing really well.. and for this we are so thankful!!! His family’s battle continues… and we are with them in support and prayer every single day.
Jack was an inspiration to us all. He smiled.. he cheered on his fellow patients…he made the best of a really shitty situation… He was a warrior. 2 weeks ago he sat in the Bat-mobile with Batman & Spiderman. This week he got his wish… legos & 2 puppies who will now keep his family going. There is a special bond between cancer warriors… one without words… just a deep knowing and connection. Families, and support caregivers understand. You just do the next thing as Peter’s brother Steve used to say. Cancer brings us as humans to such a different level of understanding. No time for drama, life hangs in balance… every day is a gift… Don’t waste the gift. Love Big, Forgive Much, Hold each other close… nobody is guaranteed tomorrow. Sadly most don’t understand these things on the deepest of levels.. until it touches them personally. Try harder… Hold each other tighter… and please please… send up a prayer for Jack & his family & all his loved ones & all the children who’s freedom & lives have been taken by cancer…for all the warriors past, present & future…it could be any of us next.
Cancer sucks.. our hearts are so heavy #jackstrong ❤
It would be easy to see negative things that happen in life as some sort of punishment or bad luck. It would be easy to let myself become consumed by negative thoughts, but I choose to look at negative things in a different light. I will confess that I struggle with this quite often, but nearly always find a way to rein it in and re-focus on what I like to call a deeper meaning for it all. It takes an abundance of faith sometimes, but the challenge has its rewards.
When I look at a fish swimming in a small fish tank, I find myself wondering if it gets bored or feels trapped. I’ve been told that fish have an extremely short, short-term memory, so every time they turn around and head to the other end of the tank, it’s all new to them. I suppose this could be true. They don’t look stressed or bored, just very peaceful in their environment.
Humans have a much longer short term memory and require much more space and distractions. However, even humans have limits to what they can comprehend and we always put limits on everything to help with this comprehension. There’s always a beginning and an end, top and bottom, left and right. But when we try to wrap our (limited) brains around the vastness of outer space, we get a little boggled trying to find something to compare it to. “Light years” is the yardstick of the universe as we try to comprehend the very impossible task of traveling at the speed of light for millions of year to get somewhere.
So when it comes to God, it’s no different. We humans long to put physical attributes like a face or even a gender to an almighty entity that the vastness of outer space pales in comparison to. Why do we need tangible, measurable attributes to be able to accept or comprehend what God truly is? To imagine a ‘being’ that is, always has been, and always will be, creator of everything we know and believe, could actually be measured or quantified in ways we measure everything else?… well it’s an absurd concept to me!
We can no more fully understand what God is any more than the fish swimming in the small fish tank can understand us humans. Faith must be the yardstick we use to measure God. Faith without limits… Faith without boundaries… Blind faith. But is Faith taught, learned or a grace given to us by God? The answer is yes!
While it is human nature to want everything to make perfect sense in order to fully believe in it, to come close to understanding what God is, we need faith. Faith is the key to getting from this ethereal world into the next soul world. Faith can be ‘the back burner’ where we just chalk something we don’t fully understand up to faith and perhaps get back to it some day when we have grown more spiritually and can understand it better.
When we are toddlers, we learn to have faith in our parents. They tell us not to touch the hot stove because we will get hurt and (most of us) believe them without having to touch it. When we are driving down the highway and we cross a bridge, we have faith it will hold us and we will cross uneventfully. But there comes a time in everybody’s life when they begin to question what they believe in. We reach the age of reasoning.
My biggest awakening or shake up came when I was in my 40’s. Suddenly the prayers we Catholics all recited in unison at every mass became full of conflict for me. It seemed silly to me to pray to mother Mary for something, Saint Francis for another and so on. Weren’t we taught to take it all to Jesus or God? I could go off on this tangent for a few pages, but I’ll stop here and stay on point.
Questioning our faith is never a bad thing. Seeking answers to solidify our faith can never fail. God will answer any questions we may have! At some point, that little toddler may question his faith in what his mom said and reach out to touch the hot stove despite her warnings. We may question our choice of religion or church we go to. We may even question why certain events happened ‘to us’. I’m pretty sure the vast majority of cancer patients have thought or uttered the words ‘why me’? Same goes for someone who lost a limb, suffered through a natural disaster or lost someone close to them.
To the (limited) human being, these are all devastating things that we feel the need to make sense of. If we dig deep and think perhaps how God might have intended this for us, a reason can be found. No, it’s not a punishment, but rather a way of showing us a new perspective. Everything happens for a reason. Had my doctor not missed diagnosing my cancer 7 years ago, I wouldn’t have met and married my soulmate. Had I not gotten cancer, I wouldn’t have met and touched the lives of countless people. Had I not gotten cancer, my life wouldn’t be so blessed with some of the great people I’ve befriended. I wouldn’t enjoy the sunsets or a field full of fireflies as much as I do now. The list goes on and on!
Yes, it does suck having cancer when I look at it superficially, but when I look at the gifts it has brought to my life it becomes a blessing. Having cancer has brought me to a deeper level of faith and understanding that wasn’t possible before. I believe we humans need disasters or hardships to bring us to a deeper level of faith and understanding of just what God is. Adversity can bring us closer to God if we take the limits off of our boundaries of comprehension, lean on our faith and be still. With hearts full of love and blind faith the answers will come. The lessons reveled and the blessings bloom.
One of my favorite verses from a rock song:
“When you think all is forsaken, listen to me now. [all is not forsaken] You need never feel broken again. Sometimes darkness can show you the light” – ‘The light’ by Disturbed
A year ago last week my husband Peter was diagnosed with cancer, just 4 months after we were married. This past year has been extreme highs and lows for us both. But through it all we have learned so much. We started this blog to offer support and information for anyone who has received a cancer diagnosis or any other life altering diagnosis. Knowledge is power. We have learned that it’s a very twisty road. There is so much research we are now able to do thanks to the internet.. not to diagnose, but to see what is available to us and to anyone entering this journey. It’s so overwhelming hearing the words come out of the doctors mouth. Everything just stops. There are emotions deep within us that we never knew were there that we experience for the first time. We all become warriors.. survivors. This year I learned more than I ever desired about CLL and cancer in general. We learned that you HAVE to advocate for your own healthcare & treatment options otherwise you could very well be placed in a treatment that could potentially be archaic and outdated. There are so many new and cutting edge treatments that show such promise!!! Your illness could also be missed. How many people we have met along our path who’s illnesses were misdiagnosed or missed completely because their doctors just threw a pill or prescriptions at them without delving deeper. The insurance problems in this country have caused so many diagnosis’s to be missed. Companies don’t want to pay for testing.. or only minimal testing at best. Simply put, if you don’t feel right rattle cages until someone listens. Even if you do feel fine ( Peter had no symptoms for his stage 4 cancer)… when you have blood work at regular scheduled check ups.. read the results!! We found that Peter’s Dr. had never read his results or she would have seen the tags that he had cancer 7 years earlier!!! We have met people who complained about feeling poorly for months or even in a few cases a year or two before they were diagnosed. By that time their advanced cancer was much more difficult to treat or their odds of winning the battle were lessened. Always ask questions, pay attention to your body, it’s the only one you get!!!
Peter stepped into such a deep soulful understanding of all the lessons he had learned (without truly understanding the depth of the lessons on a level only someone fighting the good fight understands) from his brother Steve and his journey. In a sense walking hand in hand with his brother whom he had lost only 3 months before his own diagnosis. How many gifts Steve left Peter. He shares daily with me these depths, and the blessings are beyond words. We have also learned that a cancer diagnosis makes some of the people we felt closest to including some family members disappear into thin air unable to offer any bit of support or care…. and on the flip side; the most beautiful and loving souls have appeared into our lives as pillars of strength and solid support. We have been rocked, and humbled to our souls.
We have faced and prayed through serious fears about treatment options and clinical trials. Peter said from day one he would not do chemo, it was not a treatment plan he would agree to. He said immediately that if it was his only choice, he would defer treatment. Peter signed on to be in a clinical trial. The newer research showed that chemo was absolutely the worst option for his particular type of cancer… He chose the clinical trial that had 3 pages of possible side effects instead… but made more sense… Immunotherapy. If the body is running properly it can fight off any unhealthy cells. Why not get to the root of it, the immune system instead of the bandaid. It has worked very well. His numbers all look pretty great for the most part. He had to stop taking the pill part of the trial because his body couldn’t tolerate it. That was a very scary part of this journey. He now has completed 9 out of 12 treatments. His last treatment will be at the end of August… and then we just don’t know what to expect. We have been told that he will have his blood work monitored regularly. If he starts to tank or has symptoms he will then move on to the next form of treatment.. there are new ones coming our regularly now. This insidious disease remains on a slow simmer on the back burner…now begins the journey to come to a place of peace with that until a full on cure is found. At this time we plan on continuing with our organic, juicing, healthy eating plan, Reiki, essential oils and also adding in many of the natural cancer fighting herbs that we have researched… none of which could be added during Peter’s trial period. Peter’s Dr. is very open to alternative options, there is nothing that has made him bat an eye that we have asked about. We both really like that.
The role of caregiver is too a heavy load.. although I swear Peter has been such a rock through most of the journey so far. It is so important to take care of yourself as a caregiver!!! I see my place as a solid support, cheerleader & research specialist. I take endless notes, write endless lists of questions that I fear not asking ( And Peter’s awesome doctor always turns to me and says “ I know you’ve got a list of questions Heather… hit me with them”). I want the absolute best for my husband and will not settle for less. Many many doctors can be closed minded about questions, or newer methods of treatments, or even alternative or integrated medicine. We have to speak up for ourselves, be our own advocates. My advice is now always, don’t just take whatever the doctor gives you for medicine, don’t be spoon fed without asking questions, or requesting a second opinion. Remember .. Doctors practice medicine… You are the guinea pig… Be a smart patient!!!
There is an amazing amount of cancer research happening today… we feel so blessed to live near such a great cutting edge hospital. It takes the brave and the few who decide they will not let the fear of the unknown cast them down a road that is pushed by so many doctors. Signing on to a clinical trial has its risks for sure… but so does the alternative. Our mission is to share, to heal & to fight for the cure!!! We thank you all for reading & sharing and supporting our journey!!! We will be back soon with another blog!! xo
I never dreamed I would make so many new friends and acquaintances after being diagnosed with Leukemia. Nearly every visit to OSU for my infusion, I meet someone there who is eager to talk and share their cancer journey story with me. I have found that there is an almost instant bond when it comes to cancer warriors. It’s like we belong to a club and only we know the ‘secret handshake’ that gets us in the door. Our spouses share the same bond as caregivers. We’ve met no strangers!
The more Warriors and champions I talk with, the more I see that the common ‘thread’ we share is more like a rope! What we learn about life, love and spirituality while fighting for our lives is that common “rope”. I suppose anyone who has had a near death experience would feel the same way. Suddenly we are very aware of our mortality. Once you realize how brief our life here on earth is, you don’t want to waste that time. Once you realize how quickly and easily your life can end, your priorities change. Suddenly spending time with people that drain you or are all materialistic or drama-filled makes your skin crawl and you can’t wait to Part Company!
When I meet a fellow warrior, I feel a kinship. I know when we talk and share there is a level of understanding and compassion that is different. It’s more at the soul level. This level transcends the level we are used to living on. Once you start living at this level, there’s no desire to go back! I can’t say that I don’t fear death anymore. There are days when I find myself saying “I don’t want to be me today. I don’t want this journey”. These are times when I am facing my mortality in a negative light and it takes some effort to get over the hump. My wife is very good at helping me through these times (provided I tell her how I’m feeling). Bottom line though, I do view death much differently now.
I want to be clear here. I don’t feel that I am any better or above anyone else because I perhaps have a deeper understanding of my faith or my soul’s purpose. On the contrary! I am only on a different level than others. We are all on our own personal faith journey. There is no one right path and what works for some, doesn’t work for others. God speaks to each of us in a voice we understand best. Right now God is speaking to me through my Cancer battle. Not how I would have wanted it to be, But I am learning to be still and listen.
To view life on the ‘soul level’ is to be close to God. I am most in tune with God when I am being true to myself and what I feel is my soul’s purpose here on Earth. Whenever I start to stray from that path and try to force something I really want to happen or work out in a certain way, is when things start to fall apart. It becomes clear that I need to stop, be still and listen. How hard this can be! My ego gets the best of me and tries to be the boss!
So how do I view death differently now? Death is always equated to loss. I’ve struggled with the loss of a dear brother last march. However, I do know that his soul lives on. He has made contact with every one of his family members in undeniable ways! Despite this physical loss, if I move past that and into the spiritual level it gets really interesting and almost exciting! I’ve always enjoyed travel and (most) challenges. When this body will no longer be able to contain my soul, a new journey will begin!
As exciting as a new journey sounds, I wonder if the feelings of loss or missing loved ones will be there in that realm? I know that reuniting with those who’ve passed into this realm before me will be a beautiful thing. But just how much of our ‘feelings’ are tied to this world, this body? I know this ties directly into whatever ones religious beliefs and practices are, so I want to try and dissect it to the most basic level. I believe that no matter what particular religious affiliation we all follow, at the core of them all is exactly the same foundation stone: Love.
I believe that love transcends the bonds of this physical life and is a part of our soul being. So if the feelings of loss are tied to how much we loved someone, wouldn’t we feel that loss (in our soul) after we pass? When I have felt contact with my departed brother, it was very soon after his death; within a day or two, while the pain of the loss was very fresh. I have to think there is a connection and perhaps that connection remains open between loved ones on opposite sides of physical life as long as that strong feeling of loss is present.
I know you’ve probably heard or read stories of couples who were so in love, so connected that when one passed, the other wasn’t far behind. This is a beautiful Soul connection. Two souls connected so strongly that they desire to remain together at any cost! I know not all marriages are between two strongly connected souls, and that’s not a bad thing. I have seen a lot of great couples that I don’t believe share that connection, yet they remain solid partners till the end. I feel very fortunate to have found my soulmate in Heather. I firmly believe we share that deep soul connection that will transcend this life and we will be together in whatever comes next. We are indeed blessed.