What is CLL??

From Heather
Chronic Lymphocytic Leukemia or CLL is one of many different types of Leukemia. Who knew how many different types there are, unless like Peter and his family you have experienced it. I became a crash course student overnight. One of my methods of processing this diagnosis was to log on and start googling. After working at a veterinarians office for years I hesitate in writing that. I know it makes Dr’s cringe when patients arm themselves with too much Dr Google info and walk into an office with a self diagnosis. I’ve seen the frustration first hand. My research ( knowing all of the afore mentioned experience ) was more to familiarize myself with leukemia, or CLL. I wanted to be able to keep up with Peter’s Doctor. I wanted to acquaint myself with terms and testing, treatment options, and expectations. I wanted to ask pertinent questions. I learned that there are more branches of leukemia than I could even imagine. Acute and chronic, lymphocytes..of which there are B-cell, T-cell and NK, bone marrow, lymph nodes, spleen… White blood cells, Red blood cells, Platelets. What I found is an endless amount of facts, figures, and research that is happening. Some forms of leukemia are categorized as acute… quick onset ( in layman terms). In Peter’s case, chronic.. which basically means slowly growing. One day in the bone marrow cells were dividing and forming lymphocytes as usual, and one did something different… just like that. That one cell went on to divide again and again. What eventually happens is basically, the lymphocytes which are not mature ( in Peter’s particular case), outnumber the good ones. The lymphocytes are part of the white blood cell family (again keeping it simple here), they are what our body needs to fight infections, illnesses etc. Basically, Peter has a bunch of unruly under developed lymphocytes hanging around getting in the way of any good ones that are trying to work. CLL is also surprisingly a disease that is generally diagnosed in mostly men( woman can have it, we have a new friend that has it) in their early 70’s. So it’s pretty random that both Peter and his brother were diagnosed as relatively young men. So armed with my knowledge we walked in to Peter’s appointment with the Dr who we thought was a hematologist, but is actually an oncologist specializing in hematology. It’s getting real in here. That alone drove terror into our hearts. Sitting in the office was pure torture for Peter having experienced so much of it with his brother over the years, and we all had just lost Steve 3 months previously. I thought I’d be up to speed… not even close. More blood work, and a bone marrow test later ( which is very painful let alone without sedation), we had a chance to ask some questions. Peter expressed his feelings on chemo. The doctor explained that there are many new treatments available, most are a cocktail of several things ( including a lower dose of chemo). I don’t know about you, but is the word cocktail supposed to be comforting to the mind; I mean we are not talking a martini or gin and tonic here. Peter’s doctor staged him with stage 2 and told us that he could probably wait for treatment for awhile. Some patients can go untreated for a period of time until Dr’s deem it necessary, or the patients lifestyle is affected. We also became aware of some horrifying news, Peter’s blood work had been off in 2008, 2010, and 2012.. never caught by his primary doctor. It was actually the PA in the office that caught it this time, and again not the doctor… another story for another day. We asked Peter’s doctor about getting a second opinion. He agreed, and we waited to hear from OSU, the James cancer center 2 hours away in Columbus Ohio. Research, research, research!! NOTHING prepared us for that visit!!! Two weeks later we were seated in a room with Peter’s 2nd opinion Dr… and he rocked our world and opened our eyes. For those people who think there is a cure for cancer that just hasn’t been released because Drs are greedy.. I have news for you!!! We learned from this Dr that there a minimum of 12 different types of CLL!!! TWELVE!!!! That is only what has been discovered so far. Variations of DNA, proteins on the chromosome level!! Think about all the different types of cancer out there… consider all of this, and mutations they don’t understand… its endless!!! Millions of cells divide every day.. cancer cells too!!! There are markers that have been discovered, and markers that have not. This doctor is cutting edge, on the front line of new science. At this appointment we learned about mutated and un-mutated IGVH, IGG,IGA,IGM, and then of course CD38,TP53, BETA, CD19+/CD20+,CD23, CD5,Del13q,Del11q,Del17p, and of course the Zap-70 we were waiting on from hospital one… these number sequences are all proteins, or chromosomes or defects, that attach or change a cell. I have pages of numbered sequencing….. THAT is what researchers are up against… and patients with CLL. Every single one of these proteins or items is a mutation… Another thing we learned is that straight up chemo (which wipes out all kinds of cells) not only shortens a patient with CLL life, but as the cells grow back, it can cause even more mutations to the cells making it even that much more elusive to slow. All of these mutations add to the challenge of finding a cure .. or holding this disease at bay. There is no cure at this time. When we got Peters Cytogenic study back it was 22 pages long!!! We prayed so hard that he wouldn’t have any of the “bad” proteins…his options would have been very limited if he did… chemo cocktails… a determinedly shorter life. At this point we were praying for any victory… and thank God we got it… NONE of the really bad proteins!!!! VICTORY!!!! Awesome news!!!! His lymphocytes are un-mutated (juvenile).. so it’s an aggressive type of CLL. BUT..every victory counts!!! There was some tough news that day too. Peter was staged at Stage 4 (not the 2 we had been told previously), he now has 3 extra chromosomes, 73% of his lymphocytes are malignant ( he has 27% of his immune system), his platelets are way off the scale low, and 80% of his bone marrow is affected…. that kind of sucked the air out of the room… BUT.. BUT… He may qualify for a clinical trial that has ZERO chemo in it that they are having really good results with!!!!! We are going to hold onto that!!! We are going to focus all our hope & prayers on his being accepted into that!!!

Just some other stuff we have learned along the way… This is not considered a disease that is “genetic”.. it’s rare for siblings to both have it… HOWEVER, it is now recommended that first degree relatives be tested. More research is needed. It could have been something Peter & Steve were both exposed to as kids, or during work and their particular cells happened to be predisposed to getting it. There have been large spikes in cases of CLL in rescue workers and survivors of ground zero and surrounding areas. There are higher than normal numbers of people near Camp Lejeune military base. Perhaps its a chemical exposure… they don’t know. Peter’s doctors eyes lit up when Peter told him he grew up on a farm in Vermont. Perhaps there is so much more to the exposure to things in life… but every body is different.. which is why some people are affected and others are not. There is so much information my head just spins… but I remain thirsty to learn every single thing I can. This became much longer than I thought it would!! I just want to share just a bit of what I’ve learned, and what anyone going through something like this is facing. Arm yourselves with knowledge and stay on your toes!!! You have to stay on your toes!!! I will finish with this…
Peter had ZERO symptoms the day he walked into his doctor appointment… NONE!!!! He went in for a “hey I turned 51” and I should probably get a checkup. His doctor has told him his cholesterol has been a bit high since 2008… so HE decided to have blood work. Sure he gets run down tired from time to time… but hey… none of us are spring chicks anymore and he works hard!! Take care of yourselves, even if you feel fine… go take yourself in for a checkup every so often… DON’T put it off!! YOU are important!!!
So now we wait and pray for approval into this clinical trial…. we celebrate each day as a victory!

Our journey begins here

Life is a journey, we’ve all heard that. It really is true. After much discussion thought and prayer Peter and I have decided to share some information, and it’s just not easy. Peter was diagnosed with Cancer in June. CLL, Chronic Lymphocytic Leukemia,The same cancer that his brother Steve battled. As you can imagine, the last few months have been quite emotional. So much processing of information and emotions. We have recently discovered (not surprisingly) that we are both being drawn in the same direction. Life is a journey to find meaning and learn lessons, a journey of the soul. People have offered advice to us from one end of the spectrum to the other. So many people have suggested we read and participate in support groups. We needed time to digest this diagnosis before we were ready to tackle that. After much research of discussion and support group pages, we discovered plenty of support for cancer patients. Most discuss treatments, options, alternatives, side effects, how to get through the side effects, research, future treatments, horror stories ( just like those old pregnancy & delivery stories we all were told while pregnant) and about death. There is valuable information learned whilst reading all of these things. We have been trying to absorb everything we can since hearing Peter’s diagnosis. What neither of us has found is a site that speaks to our souls about this journey. It is a journey. Everyone experiences life different, and cancer is no different. Everything becomes so real, bright living color. Peter is looking at this diagnosis in a way I never imagined. He is deep and insightful and inspiring. This diagnosis of cancer gives life a clarity that previously can’t be comprehended. I myself have not found a support site for spouses with cancer that resonates. There is care taking advice (for spouse & self), but not about the journey. Sometimes its raw, sometimes heart wrenching, sometimes there is anger, somedays there is great fear, and other days there is a deep faith, and with us .. yes even laughter. We think it’s important to share everything because it will resonate in someone out there. We desire a place to share this journey that is different, that is real. We are but mere humans finding our way. We have made the decision to blog our process; that is what we both feel called to do. We want to inform people and if people are so inspired we hope that we can all share information. We will keep it real. We both want something different out there that speaks to us and anyone else that is on this journey. We will share from each our own perspective along this road called life & cancer. Somedays it will be journey based, some days it may be good, somedays it may be hard, some days we may not want to speak of cancer at all and just share a laugh or memory. Neither of us is exactly sure how this will go but we will see where we are directed. Peter looks at this diagnosis as a gift in many ways and he inspires me beyond words. I don’t look at cancer as a gift, however I do agree and realize there will be gifts along the journey. One of these gifts will be the possibility of opening discussion, healing, knowledge, growth, and peace. Everyone has something important to bring to the table. We welcome you to share this link and share your experiences. Please keep in mind, we hope to really do something different.. even in the midst of the struggle to find peace somehow… we all crave peace.… We desire to map this journey. There is no blueprint to this journey, for anyone, and every journey is different. If we can in any way help anyone navigate waters, that will be a gift to us. If anyone has thoughts and experience to share, please feel free. We pray without beginning or end that a cure for cancer will be found and that this speaks to someone somewhere.
Stay tuned…

The Diagnosis

Wedding day
Wedding day

I am going to share something very personal in a way or ‘light’ that you probably have never heard nor would expect. This personal view point would even be considered controversial depending on where you are in your faith journey.

I have been blessed (diagnosed) with Leukemia. Specifically Chronic Lymphocytic Leukemia (CLL for short). I have been unknowingly carrying this since 2008 and only recently (June 16) discovered its presence permeating my bone marrow and blood stream. To look at me you would not know anything was wrong. Besides struggling with fatigue and getting winded easily, I feel pretty normal physically. The biggest battle right now is the mental and emotional struggles that rear their ugly head at any given moment from seemingly out of nowhere and for no apparent reason. My beautiful, wonderful, amazing wife shares this battle very closely with me. It pains me to see the effects my disease has on her but I thank God that I am the one inflicted and not her!

Getting back to the first line of that paragraph, “Blessed” hardly seems like the appropriate term to describe such an awful, non- discriminant disease such as cancer, but after my initial shock at the Oncologists words “you have CLL”, I began to feel a sense of peace. Initially I mistook this feeling of peace as denial.  Just 3 months prior I lost my brother Steve who battled CLL for about 20 years! His last hope of shaking CLL was a bone marrow transplant which ultimately led to a secondary infection in his lungs that did irreversible damage. It was a slow decline rendering him a frail shadow of the once healthy vibrant man who loved the active outdoors life.  Of course I immediately freaked out hearing my diagnosis! I knew and saw firsthand how CLL slowly destroyed Steve’s life and took a heavy toll on his wife and all of us, his family. The doctor could not have hit me with a bigger hammer! Yet there I was; praying and feeling a sense of peace and ‘all will be well’. I was blessed to have a potentially deadly disease!