Laughter is the best medicine.. there is no doubt. We live in a home of love and laughter here! Some days life is heavy and we have to work extra hard to pull it out from the depths, but it’s always there deep inside. The word cancer strikes fear into the heart.. laughter reminds us we are still here alive and kicking. You can’t curl up in a ball and heal. Why not enjoy this daily journey of life with a good belly laugh. I read once in a book that laughter was like an aerobic work out for your guts… I love that..( I read so much I can’t remember which book, but when I do remember I will pass that gem on to you all)! Peter’s mind for humor, and puns, and thoughtful hysterical nonsense is fabulous… It’s contagious …I’m learning to keep up as long as I have at least one cup of coffee in me. It was like this before and it remains unchanged. We simply crack each other up. This is how we face challenge too. When we feel nervous, we laugh, and suddenly we both feel better. I’m not going to say there aren’t bad days.. but there is always a positive spin on even the worst days. Why?… Because we have each other, and that just brings our hearts such joy. I wish we were not having to go through this, heck we just found each other and only just got married almost 9 months ago. It’s the hand we have been dealt, and we are both here for a reason. We are going to savor every single minute of the next 50 years together… because we are going to kick cancers ass! We are going to live and pray and laugh through this journey. A positive mind is a strong mind, a survivor mind. The mind can heal the body.. we have all heard this and it’s true. That being said, a negative mind is also a strong mind, it can do great damage. A negative mind can cause a body to give up and die. We just were talking the other day with a volunteer at the hospital while Peter received his first treatments. She was a retired oncology nurse who “graduated” to volunteer level of service ( she loved her job so much). She stopped in to visit with us during Peter’s treatment and we happily chatted with her about life & love & cancer.. and about keeping a positive attitude. She agreed whole heartedly and told us about something the oncologist she had worked for told her many times. He had said that he struggled going into surgery on patients who had a negative or victim attitude because oftentimes they would have more complications and their outcomes were not nearly as good as the patients with positive attitudes. That really spoke volumes to us both. We know that this is a journey of faith, trust, love and laughter. In the treatment wing the nurses and patients work as a positive team. We laughed with everyone who came in our room. .. we had a lot of people in and out of our room. Positive energy attaches to positive…negative attaches to negative. We’ve all worked a job where one of our co workers shows up to work cranky or negative and before you know it everyone is cranky & negative. I must say I was worried before we arrived that first day about sitting in a depressing atmosphere while Peter received treatments… but not to worry… there is so much light and positive energy in there you wouldn’t believe it!! Even in the midst of fear & the unknown we all have a choice… smile. Send some love out there… find the positive in a negative situation and hold on to it tight!!! That’s right where we plan on staying!! We are going to keep on laughing!! It really is the best medicine!!

Tomorrow’s the day. The nail biting waiting is nearly over. It’s hard to tell if I’m more nervous or excited. Either way there’s enough of both feelings swirling around in my head to command my attention today. I’ve never been much of a gambler. Aside from taking chances behind the wheel or handle bars of a motorcycle, buying a few lottery tickets occasionally; gambling just doesn’t appeal to me. I’ve never dropped a penny in any casino. Upcoming treatment for my Leukemia will be the biggest gamble of my life, with my life! I will be in a clinical trial. Basically, they are experimenting with a combination of two drugs. The short term success of the drug is known, but outside of 10 or so years down the road, it’s unknown territory. The first hurdle is to get the very expensive drugs and numerous lab works, CT scans and bone marrow biopsy’s covered by insurance. Then we cross our fingers and hope no side effects bump me off the program. The side effects are the real gamble ranging from a rash to my heart exploding or my lungs swelling up and suffocating me to death (The latter being a very slim chance).

I was never a fan of Chemotherapy. It just doesn’t make sense to me to take a poison that kills everything with the hope that the good cells regrow and proliferate instead of the cancer cells. As Science has learned, Cancer cells are very resilient and quite often mutate. I have read many different statistics about the percentage of relapse or ‘new cancers’ caused by chemo and it’s staggering. Rather than suppressing the immune system (our natural protective system) and relying on drugs to fight the cancer, the approach of immunotherapy is the exact opposite.

My immune system has fought off more sickness and disease then I can every possibly imagine! Sure there has been some times where I’ve had to give it some help with antibiotics, but its success rate has been phenomenal! Somewhere along my path, I either came into contact with some cancer causing chemicals and/or had an illness that hindered my immune system from being up to its full potential and cancer got a foot hold. Poor diet and stress are also part of that cocktail. I have learned from genetic testing done on my bone marrow that I know have 3 extra chromosomes (You might say I’m a bit of an ‘overachiever’). I will never know just when and how that happened, but once my DNA was changed by the addition of these 3 extra chromosomes, my immune system became blind to the new killer blood cells that were created.

Immunotherapy is what it sounds like. My immune system has called 911 and they are going to send in some serious troops to hunt down and kill the unwanted guests. In addition to the “killers”, I will receive another drug that will boost my weakened immune system so that the attack will be from all angles with little, if any, collateral damage to the rest of my body or organs!

Chemotherapy would be like dropping a bomb on your house to get rid of a mouse problem. Yeah the mice would probably be gone, but so would your house! Chemo cripples an already compromised immune system. Your entire body is dependent upon a healthy, working immune system. When it is compromised everything begins to become unbalanced and diseases and infections can more easily infiltrate. Most people don’t die from the cancer, but rather from secondary infections arising from the cancer treatment! My brother was declared cancer free about 2 years before he died. The bone marrow transplant was successful at killing his CLL, but opened the door to a very aggressive lung infection that no one ever recovers from without a double lung transplant. He was on immune suppressing drugs until his very last day because of the Bone marrow transplant.

Immunotherapy helps to address the very reason cancer proliferated. Remove the cancer and correct the cause of the cancer and you will truly be cancer free! Think of it like your basement. If you had a leaky foundation and you installed a sump pump to remove the water, you are only addressing the resulting water and not the source. You could say you have a water problem when in reality it’s a foundation problem.

Chemo’s days are numbered. From what I am now seeing that’s available in clinical trials, the future of cancer treatments is looking very bright! Considering it takes 15-20 years to develop, test and approve a drug for standard treatment. Immunotherapy has been studied and tested for at least that long and scientists are making great discoveries! I encourage anyone with a cancer diagnosis to research these new therapy’s and also research what exactly chemo is and the success rate of Chemo on any cancer. Knowledge is power!

Having a potentially deadly disease really puts life into perspective! What would you do if you knew you only had a short time left? I guarantee your list of priorities would change, perhaps even drastically! While I have always realized my mortality, I have become acutely aware that drama and head games have NO PLACE in my life! I don’t care WHO you are! I find myself saying to people as they ramble on about the drama with a friend or relative: “So what?” and “let it go”. It amazes me the crap that I wasted my time on in the past. When you put it in perspective of the bigger picture it suddenly seems trivial and silly. That’s not to say that there aren’t real legitimate relationship and other stressful problems we all need to deal with. What I am saying is we need to evaluate how we deal with them. Are we ‘keeping the peace” and never facing the problem head on? Are we in denial? Are we trying to “even the score”? These are all unhealthy for our soul and our bodies. Studies have proven this time and time again. I used to be a “peace keeper” never wanting to upset the other person. I learned that the issue(s) remain there, just below the surface, until they are dealt with. In the end there was inevitably a blow up. Like a pressure cooker, when I pushed things down over and over again, it became more difficult to control just how and when they would burst out!

What have you been putting off till later? Well, every day is ‘later’ and we need to evaluate our priorities. We all make time for who and what is important to us so when I hear someone say “I just don’t have time for that” I know it really means “That’s just not important to me”. I know now more than ever how important it is to be honest and true. Not just to everyone around you, but to yourself! Willy Wonka’s Chocolate factory movie (strange as it was) is a prime example. What kid ended up with the prize at the end? Not the spoiled kid; not the kid that stole and lied; not the kid who just helped himself to whatever he wanted. Nope. It was the kid who did as he was told and didn’t lie, steal or cheat. Yes, he slipped up once but owned up to it and was forgiven. It’s okay to say you don’t want to do something instead of making an excuse or just not showing up. We tell little white lies to someone thinking the truth might hurt them when in fact, they are hurt anyway and more so if they find out you lied! Yes the truth will sting sometimes, but when you respect and care about someone enough, the truth should be your focus. No one likes being lied to.

We learn as we live. Nothing is a better teacher to us then experience. Everyone I know has said at some point in their life: Boy if I could go back to ____ time with what I know now, things would be a LOT different! How true that statement is! Knowledge is the golden ticket folks! Having clarity and focus on what is important in life is the key to being happy. Happiness isn’t dependent on wealth or even health. It’s knowledge! Knowing you are going to die one day (as we all will) and making that the driving force of our interactions and reactions and undertakings, will lead us to live true to ourselves and others. We will live a more peaceful life and know true happiness regardless of the many storms we will endure.

 

 

 

I missed my self imposed Monday deadline to write… it’s been a challenging week for us. I will start by saying that every single day I am blessed to spend with my beautiful husband is a gift beyond words. Had we ever only had one day together, my whole life & world was forever changed. I believe however you want to express it, it was a God thing, a universal shift, a blessing of the deepest kind. We are here together for a very important reason & journey. We are soulmates. My sweet brother in laws have nicknamed me “The Rookie” … I will just say, it’s been a hell of a rookie year… I hope and pray we have at least 50 more) Incredible high’s; eloping in Key west in February on the beach at sunset, and then getting married all over again a few months later surrounded by our families and friends… and then the incredible lows; losing Peter’s brother Steve on our one month anniversary after spending most of that first month at hospitals in Miami & North Carolina praying for a miracle.. and the following month having Peter’s blood work come back “weird”, and 2 months later this cancer diagnosis. Life is a journey… the destination is a mystery. We have to remind ourselves to let go and have faith and trust. At any given moment we could walk off a curb and get hit by a truck… we just don’t know… So we must live full and love deeply. Some things are just what they are and we do the best that we can. Sometimes it’s so damn difficult to keep the faith, but we must… it’s the only way. This brings me to what I feel compelled to blog about today. As we have both said before; we want to reach out, share, and educate people about not just cancer… any illness, and the process one goes through when living this real stuff. Peter is about to begin treatment for his cancer. It’s so overwhelming and scary. Through all of our reading and research we have seen over and over that with this particular type of leukemia ( CLL ) it is highly recommended that Peter gets into a clinical trial. The other two options are to do nothing and to do chemo. Peter said from day one he did not want to do chemo. Chemo has it’s place, it saves lives every day. Chemo is offered for this type of cancer at most hospitals.. and it certainly can prolong a patients life. It doesn’t however always give the quality of life a patient would like. They now offer lower dosage chemo, it doesn’t make your hair fall out or give the plethora of terrible side effects. In the research hospital where Peter is going it is also an option… but if they can slow the cancer in different ways they feel it’s better for longer survival and less complications. Chemo has a tendency to anger the CLL cells, which in turn makes them mutate and ultimately become more difficult to treat. Peter’s brother Steve… the last round of chemo he was on didn’t work. He had become resistant. So here we are are looking at clinical trials. Let me say this, there is great promise. There are many clinical trials out there, that are prolonging lives. Wow, is it scary though!!! Shooting darts… playing with chemistry… and life & death. To get into a clinical trial can be a bit of a challenge. First, you must be a patient at a hospital that does them. The first hospital Peter went to said they would give him chemo when it was time to treat him. Peter knew that wasn’t an option he wanted to do, so we requested a second opinion at another hospital.. two hours away. It’s worth the drive, it’s of utmost importance to really have a good connection with your doctor, and trust. Don’t just receive any information at face value without asking questions. We are so glad we made the decision to seek another option. Clinical trials are VERY specific!! Whomever develops them and writes them up sets the guidelines. The guidelines are very specific. You have to fit into every single guideline 100%. Peter has too may symptoms for one trial… and not enough for another. Last week Peter went in for the full body CT scan in “hopes” that he would have even one swollen lymph node… seems wrong to hope for that. His doctor was hoping to get him into a particular trial. His lymph nodes are not swollen…enough… we found out Monday. His spleen is extremely large ( the body’s largest lymph node), 80% of his bone marrow is affected, approximately 75% of his lymphocytes are malignant… but because his lymph nodes elsewhere are not swollen so he doesn’t fit the profile. So this week his doctor presented Peter with another option… another clinical trial. He fits into it… hallelujah right..??.. Well you tell me…Once I had some details I began doing research on the drugs. This particular trial has 2 drugs, one is approved already by the FDA, so the cost isn’t covered in the trial… wait.. I thought if you were in a clinical trial everything was covered… NOPE. This one particular drug runs $15,000 for a 28 day supply… and Peter will need to be on it indefinitely … as long as he doesn’t have any of the 2 pages of anything from mild rash & stomach upset to sudden cardiac failure,secondary cancer or some thing with the layers of dermis & epidermis separating…. I’m in a cold sweat at this point. They have to tell you this stuff, every drug has side effects. Most people don’t get the severe ones, but how bad does it suck if you’re in that small percentage. Then there is the clinical trial drug itself ( the only thing you don’t have to pay for in a trial). Now by the time a drug gets to this point it has been in the works a good 10-15 years, and this one has been tested on people in one round before now. So they have figured out what dose to give… you know… trial & error… yikes!!! Peter will need to be consistently monitored over the course of 2 days when this infusion is used… to watch for allergic reactions ranging again from mild to severe. All of these drugs will start at low doses and then amped up over the course of several months and then continue for a year. The pill that is already FDA approved.. yeah the 15K a month one he would remain on indefinitely ( we don’t even know how anyone pays this kind of money monthly for lifesaving medicine)…Of course they will take him off if he has any issues on it like secondary cancers… In the midst of the trial there will be 1-2 trips a week to the hospital 2 hours away the first month. Because he will be on a trial, anything “funky or scary” will require a trip back to the hospital. All testing, blood work, CT scans, bone marrow testing etc… are not included in trial… and if anything goes wrong with Peter during the trial… it is at the insurance company’s ‘discretion’ whether they will pay for his care or not… WHAT?!?! Well because it’s a clinical trial.. aka experimental thing… they can deny payment… because chemo is the approved treatment for cancer in general. Holy crap!!! How can we even move forward to find a cure without experimenting & research… but one false move and financially you are cut off at the knees( This country’s insurance problems are going to be the ruin of us all ). Oh, and even though Peter is approved for this trial the insurance company has to approve him being on it… How does anyone working at a desk get to decide my husbands fate??? I am struggling with what is the right choice, Peter reminds me that not making a choice is also making one… and we know what the alternative is if he does nothing… How do you know what is right… how do you live with yourself if its wrong. How do you know??? It’s been really hard battling fear this week. When we received the 20 page contract yesterday the reality of signing on to be an experiment in finding a cure became that much more real. I had a talk with Peter’s doctor, I asked him what he would do if this was his son or brother or parent, I said doctor.. one year is not enough… I want 50 years with my husband!! This doctor is wonderful, I believe in him, I trust in him to do his best… but there are no guarantees, he reminded me there is no right decision… there is only faith… Like Carrie Underwood singing “Jesus take the wheel” kind of faith…. my hands are white gripping the wheel. I’m afraid to let go… Ultimately the decision is Peter’s and I will stand behind him 100%!! We are in this together, partners all the way!!!

Sometimes I know it would be easy to entertain thoughts of being ‘broken’ or ‘damaged goods’.  When I am struggling, I sometimes think that my wife isn’t so lucky. She got a husband who is ‘damaged’ and one she could potentially very easily outlive. I know with medications, I will be able to keep Leukemia in remission, but with a very high price tag! Like buying-a-good-used-car-a-MONTH for the rest of my life price tag! This can terrify me! I find it difficult to talk to my wife about these feelings, but when I do open up, she always amazes me with her response and I feel better about getting it out of me. She is a true and full partner in this. Negative thoughts are poison to my soul and damaging to my relationships. As the title of our blog page states, this is a journey through cancer not ‘with’ cancer!

Yes, cancer has made my life a difficult path to walk. Fear plays hell with my brain daily and sometimes, things tend to snowball if I let them. Some days are dark and fear wins most of my thoughts. But my goal is to stay positive and put a positive focus on what Cancer has to teach me, but this blog is about the whole journey. I am going to be real with you which will be raw at times. If you or a loved one has Cancer, my hope is that you will find comfort in reading this and find inspiration to keep your focus on the positive little pearls of wisdom that can only be found on a journey such as this. Cancer is more of a mental and emotional battle then it is a physical one. I know people have physically beaten cancer, but mentally and emotionally still struggle. Weather I physically beat leukemia or not, I WILL NOT let it beat me mentally/emotionally! I know the important role that my wife, family and friends play in this too. Surround yourself with good, loving, supportive, positive people and when it gets really dark, just focus on doing ‘the next thing’ and don’t worry about the next day, week, month, year. This is your time to receive grace and love. Be open, be honest and receive.

 

There are so many things swimming around my head to write about it’s hard to know where to begin today. I think I will hold off a bit on the piece regarding heath insurance (groan) a little while longer as it has the tendency to put me in a pretty foul mood!!
Since we are entering into the cold & flu season, I’m going to write about germs. Let me start by saying… and my people will laugh hysterically … I am a HUGE germaphobe!!! My coworkers at the animal hospital chuckled at me daily for my “swabbing the deck” with alcohol swabs. I had my own bottle of alcohol under my desk… I cleaned religiously!! Dog kisses no problem.. when one of my coworkers used to say she licked something of mine ( you know who you are)… haha ( I loved them all like sisters) but.. where are my gauze pads soaked in alcohol??? I so rarely get sick, but that is exactly what happened recently. Sitting on the couch, next to Peter one evening all of a sudden my throat was sore, my nose stuffed up… I got a headache… oh no.. panic set in. I took my immune boosters, had some green tea, honey.. the whole nine yards… where did I pick something up??? The gym, I wipe everything off there before & after…. the grocery store??? I’m more contagious before I know I’m sick right?? I know I kissed him… several times… (we are newlyweds) today… PANIC!!!! You see, Peter can’t get sick… he hardly has any immune system. His lymphocytes are 73% useless.. malignant. Everything that I have read was backed up by his doctor; usually it’s a secondary infection of some sort that takes a CLL patient.. primarily lung infections. Chemo wipes out good and bad cells… making a person during treatment vulnerable to infection… Peter’s system alone is kind of like that. He has a small percentage of his lymphocytes trying to work.. but the vast majority of lymphocytes are malignant.. useless.. and are just getting in the way, blocking the good guys from doing their jobs. You don’t usually really give it a thought so much when you get sick… I mean nobody likes to get sick… but it happens. Well given our “new” reality… any illness can become a major problem!! When I woke up the next morning I knew I was really sick.. achy, fever,stuffy head, really crappy.. then I remembered and cold terror hit me. Peter can not get sick!!! This is what it’s like loving somebody with cancer… I want to shield him and put him in a safe bubble … and here I am sick. “Don’t get near me” I’m in a panic. Three days I sit outside on the deck trying to stay away from Peter who is feeling so weak & tired & dizzy and laying on the couch. I can’t help him… I can’t sit with him.. rub his back, because I don’t want to get him sick…maybe he’s getting sick from me… We’ve had to look at EVERY SINGLE THING in life from a new perspective & reality. Getting sick used to be nothing… now it could be life & death… I’m really feeling fear now. Fear… there it is… I know the opposite of fear is faith… fear is winning the battle right now. We’ve never had to think like this…. it’s scary! Peter’s doctor had told him at his last appointment to not put himself in situations where there were sick people. We stay out of large crowds, off planes, we unfortunately have to be careful around people. We love people… it’s a life changer. We have to ask questions like, “are you feeling ok”, “have you been sick”, “anybody in your house sick?”. We have to sanitize hands after handshaking. We are both huggers… and we have to revisit the safety of it. We have to be careful around children.. who so often have runny noses…. This simply sucks!!!!! I don’t think many people out there understand how dangerous being immune compromised is on a day to day basis. Big old hug… just like we both like to give and all of a sudden we hear, “how you doing… I’ve been sick with this stomach bug or chest cold for a few days now…” AHHHHHHHHHHH NOOOOOO…. you just hugged us… whyyyyyyyy????? Even a simple trip to the store can be disasterous… if I had a nickel for every person I see cough & sneeze without covering their face.. I’d be rich….. really…germs flying everywhere for every person to breathe in…

FEAR ….. reality

The opposite of fear is faith…. you can’t truly feel both at the same time… one drowns out the other. By some God given miracle Peter does not catch what I had… Thank you God for this blessing… looking for the beauty in everything….my prayers were answered… Peter still has cancer… but he didn’t get my nasty virus…

Some days fear wins… it’s a battleground inside. There are so many emotions attached to this cancer. Out of nowhere deep feelings rise to the surface and shake you to your core. I try to focus on my faith at these times… Just because we sometimes get rattled and shaken doesn’t make our faith any weaker … we are after all only human. We aren’t lost… we are just walking the path of life… with it’s twists and turns. There will be hard days, and times… and there will be joyous triumphs. Peter staying healthy is a triumph… really!! So if we run into you out there.. please don’t be offended if we don’t hug you… man do we want to.. bear hug… Please understand somebody with cancer needs to NOT get sick… Peter can’t get sick!! If you are unwell.. blow us a kiss, let us know.. we get it.. it’s of utmost importance as we come into cold & flu season!!

Faith is easy when things are fine. The sun is shining, birds singing and you’re feeling good. It’s so easy to see God everywhere you look. What happens when nothing seems to go right? How strong is our faith when we feel broken, hurt or even angry? These are the times when God is speaking to us the loudest. These moments of pain and suffering are not lost with Him. God is opening a door for you even if you are only focused on the one that just got slammed in your face. I have had the most personal growth in my most painful times. My greatest ‘ah ha!’ moments came from stumbling and seeming to fail. The greatest inventors of all time failed more times than they probably could have counted before they got something right. They kept their focus on the prize. Just as steel is tempered with blazing hot fire, so too are we. So too is our soul.

Have you ever made a wrong turn and found yourself driving down some road you’ve never been on before? Of course! We all have! How many times has this happened and you discovered something interesting on that ‘wrong road’? Maybe it took you through a really bad neighborhood (my wife can tell you MANY stories of how I have the uncanny ability to find the ‘hood’ in EVERY city we’ve EVER been in!) and you were frightened. God is there too. An inadvertent drive through a bad neighborhood will have you realizing how good your life is or maybe even point out something you need to change in your life… God, teaching us to grow. Challenging us to examine our life choices.

Watching my brother Steve succeed and be declared cancer free 3 years after a bone marrow transplant only to be hit hard with a bronchial infection that slowly suffocated him to death made me question his faith. I remember having the conversation with him after 2 hospitals denying him a lung transplant. Steve lived on the 19^th floor of a building overlooking Biscayne bay. He spent many hours gazing out over the bay and would post daily pictures of a sunrise or sunset colored storm clouds. He was tethered to an oxygen generator with hose enough to go anywhere in the small 1 bedroom apartment. He quoted bible verses nearly daily on his facebook. “Steve” I said. “I can’t believe after all of these setbacks and getting your hopes up only to have them dashed…If I were in your shoes I think I would be seriously considering a swan dive off the balcony to the tennis courts below!” Without hesitation he looked at me and said: “I can’t climb over the railing”. He was joking of course but his next words really resonated with me. “I just do the next thing I need to do”. Steve wasn’t focusing on the ‘what if’s’ or the closed doors, he was just putting one foot in front of the other and walking towards the next potentially open door. He didn’t doubt for one second God wasn’t with him, God wasn’t holding him close.

As much as I admire my brother’s strength and courage, I just couldn’t fully wrap my brain around that kind of faith or soul strength. Little did I know at the time, God was teaching me through Steve things I would need in the very near future! It wasn’t until shortly after receiving my diagnosis of CLL that these lessons would begin to resonate within me.

Being the youngest of seven, I have always been very competitive. I have always felt the need to succeed in whatever I take on and get attention for my accomplishments. I would rather win someone’s respect and admiration rather than their pity. When I was diagnosed I had the same choice Steve faced. The same choice everyone has when facing a huge hurdle or life changing event: Lie down and let it consume me or stand tall and fight! Being a highly competitive person I could not entertain the thought of lying down and crying ‘woe is me…’ Sure it knocked me down hard for a bit. My wife said ‘today we will cry but tomorrow we will roll up our sleeves and fight this with everything we have!’ In the days and weeks that followed I would slowly begin to see myself gaining the same strength of faith as Steve had. Our conversations about faith and cancer began to ring in my ears and at times, I feel him with me. I feel his love.