It’s been awhile since I have been able to type out complete blog posts detailing our circumstances, daily lives and emotions as we go thru the cancer fighting journey. While I have 12 blog posts started none have made it thru preliminary and final edits. Every waking hour the words, “Caroline, mommy, mama, mom” all announce themselves meticulously throughout the day alerting me of each of my family members’ needs requiring my diligent effort. Even sneaking to the bathroom no longer gives permission to hide from all the needs my little ones believe are so immediate. The only thing that permits quietness and alone time are the late evening hours where all 4 members are sleeping, or the run to the store to pick up more veggies for juicing. That is, if I don’t have a little one in tow. Unfortunately, to use the quiet hours in the late evenings mean that the early morning whispers, “Mommy! I’m awake and I’m hungry!” will waken me with punishment. Punishment because my body cries for more sleep so that my own body may heal itself and prepare itself for another physically and emotionally draining day.

Alas, yes, this could be a “woe is me” post. A blog post detailing out the toughness of the journey. The details of why everyone should feel sorry for me and why my husband’s battle against Stage 4 Cancer, no matter the path taken, is a beast. Please do take note that while it has been tough, I can also write a novel on all the hidden blessings and amazing stories. (I someday will write that book!)

As I reflect on the month of December a freight train of emotions and thoughts flood my brain and my heart. Questions hover with no answers. Doubts and hopes intermingle themselves. My inquisitive mind has investigated and searched thru a plethora of medical and governmental websites searching for answers to all the sound bites that people, whether family, friends or acquaintances, throw at us. These sound bites include statements such as “this cures cancer… this drug is 86% effective… this treatment has proven itself to…” In the end, all those statements are just what they are: sound bites. When I dig behind all of them, both on the “conventional” side or the “alternative” side not one promises a cure (and they shouldn’t) and not one tells the full story in their headline. Then there is the, “If he would have done chemotherapy Ryan wouldn’t be . . .” and, “if you would have done this treatment or used this alternative therapy Ryan would already be feeling better.” The preceding last sentence is the biggest lie anyone could say or believe. There are no definites in life, let alone definites in the cancer battle. No one, ABSOLUTELY NO ONE, knows what Ryan’s state would be had he done something different. He could be in worse shape, even death, or yes, he could be in better shape. We acknowledge both sides of the possibilities. However, we rest in the fact that we have chosen a path and continue to feel led in our choices accepting that

“we should have’s” are only a rabbit chase into a never ending set of possibilities, both positive and negative.

What I do know is that 20-30% of Stage IV Follicular Lymphoma patients present pleural effusions AND that Ryan’s pleural effusion presented itself all the way back in September and was confirmed by the oncologist in October. This was another sign of advanced stage IV cancer. Whether chemo or no chemo, Ryan was very likely going to face this issue as it is fairly common on both sides due to its advanced state. Ryan had 1.5 liters initially in October and nothing was done because he showed no symptoms. In fact, in October and November Ryan’s protocol completely removed all symptoms in his body and even visually reduced the size of lymph nodes around his neck and underarms. Ryan went from night sweats, intense headaches, bone pain, weakness, shortness of breath and many more symptoms to essentially no symptoms during the month of October and November. It wasn’t until Ryan had a lot of dental work completed that he had pain and limited ability to eat, hence he lost about 8-10lbs in 2 weeks. Then about a week into December the onslaught of fluid build up symptoms started and it presented itself initially as anemia. What we now know is that the current symptoms are all connected to the fluid build up that became severe because no one, both local and out of town doctors, nor Ryan and I, knew it was fluid until a CT Scan of the abdomen was administered in the ER. We also know that based on that scan, the cancer is “stable” and has not progressed since the last PET Scan in early October (which is a victory in and of its own).

Thorancentesis Procedure at St. Francis Hospital (done 3 times in one week. Each time 1.5 liters removed)

Why is Ryan’s body continuing to build fluid in the lungs? That’s the million dollar question. This is the best explanation: Ryan’s lymphatic system is compromised. In simple terms, the lymphatic system is part of the circulatory system and its primary function is to transport lymph, a fluid containing infection fighting white blood cells throughout the body. It contains white blood cells, waste products, debris of cells together with bacteria and protein. It helps the body get rid of toxins, waste and unwanted materials. Because it is compromised, the system is not functioning correctly and leaving unwanted fluid in the pleural cavity of the right lung. In Ryan’s case, the right lung became so filled with fluid that it ‘spilt’ into his left lung and also overhauled the liver causing it to spill into the abdomen creating pockets of fluid. This is the best explanation we have received so far. The fluid has been tested on two occasions and those results did not give us any real answers. Yes, there were cancerous cells in both fluid bags, but it is stated that cancer cells die within a couples hours or so of being removed from the body, so we do not know if the cancerous cells were dead or alive while in the cavity.

Catheter installed for in home draining.

People look at Ryan’s current state and view the pictures granting themselves the authorization to decide how “bad” Ryan is or how Ryan “should be” doing or how Ryan “should” move forward. Yes, we are all entitled to our own opinion, but we are not entitled to tell Ryan how he should proceed. I, myself, have come full circle once again realizing that there is no perfect path. No matter the path we take, this is and will continue to be a battle. A fight that will take both Ryan and I. To come to terms again that Stage 4 cancer is serious, complex and life threatening is no easy task. But, to find that peace that passes all understanding is the only thing that keeps me going every day.

So many have asked, how do you do it? And, even so, how do you it with poise and calm? My simple answer is that I have no choice and my fretting or getting all emotional and worked up won’t change anything, but would only cause additional emotional turmoil to me and those around me, especially Ryan. The real answer, however, is that I continue to lean on the peace that surpasses all understanding. When I listen to the words, read the scriptures or simply sit still for a moment meditating and praying, there is only a peace that surpasses everything. It is not answers, it is not a how to. Just a peace. From there I feel led. My heart guides me and many a times I can tell when it’s my own want and ability to control things versus allowing the Grace of God to show us the way. I also believe that there is no one single way to win the battle, but the way must come thru peace. In the end, whether in victory or defeat, the person fighting the battle must feel as if it was their decision and their choice on how to move forward. I truly hope everyone that reads our blog understands this important statement. Ryan and I have no interest in convincing anyone what path they should take, however, we do hope that whatever path one does take, it is their own path, chosen by them and with peace.

I firmly believe because Ryan was able to slow down the roller coaster called “Cancer Battle” he was able to come to decisions after his own research and at his terms. The ability to move forward in confidence has given him strength to fight. As many know, Ryan’s natural self exudes energy, vibrancy and confidence. WIth this confidence, he has been able to go thru all the ups and downs with a broader view of what was happening. I have to be honest here. Actually, be quite brutally honest. I used to think that Ryan wasn’t that ‘tough.’ I mean he is mentally tough and has tackled challenges in our life in ways that I admire, but when it comes to physically being tough I had some doubts. If you have ever heard of the “man flu” as depicted by a popular meme on Facebook then you will know what I mean. But, boy was I wrong. What Ryan has physically endured and continues to endure one can only applaud. And, not only enduring those physical challenges, but continuing to have belief and a light of positiveness is amazing. Even more so, Ryan’s ability to endure some of the attacks we have faced these past few weeks for our medical choices have left me in awe. The strength and grace is hard to describe. To have to battle physically the challenges that cancer throws our way and then to also battle people, is well, tough. The only description that I can come up with is admiration.  But then again, I know where his strength comes from: it is the strength that comes from knowing whose we are.

To finish up, here is a quick overview of our next steps in our Journey to #CancerFreeRyan.

After much discussion, prayers and research we have come to the realization that our protocol needs more “cancer killers.” If you have read our blogpost titled: Day 7: Health Update & Putting It All Together, you know that we believe in a “Cancer Eradication Cocktail” which is Nutrition, Emotions, Repair/Boost Immune System and Removal of Toxins/Killing of Cancer. At this point, we have concluded that we need to add more to number 4: Killing of Cancer. I have already added, in a big way, turmeric back into Ryan’s supplement list since we know the liver is handling everything else well. On Sunday, January 3rd we will be traveling back to Tijuana, Mexico, to go thru an intense drug therapy for two weeks. This treatment is quite expensive, the single most expensive treatment thus far and will continue to be an expensive monthly treatment until he reaches cancer freedom. (Which is why we are back to ‘fundraising’ again.) This treatment has shown great results in killing cancer. We even have some true, factual testimonials of others that have seen great results with this treatment. Unfortunately, at this time, for many reasons, we are not able to expose the specifics of what we are doing publicly. We do look forward to sharing those details soon, we just can’t at this time. (*edited: the treatment Ryan was given is PNC-27 via IV. While Ryan was at Chipsa in January 2016 he made vast improvements but we are unable to say if the PNC-27 was in fact the one thing that made the difference or if it was the entire program that helped him. Please read the blogpost January 2016 A Second Chance . . . Why CHIPSA? to understand what we did January 2016 to vastly improve Ryan’s health.)

For the rest of my lifetime, I will never be able to say thank you enough. Thank you to all of you. Thank you for your support, your love, your kindness, your generosity, your prayers, your trust and everything else I am leaving out. While I am not able to write thank you cards at this time, please know that each of you who have done something for us, whether physical, monetary or even just in kind words and prayers, we are thankful.

#LuelfStrong
Live loved,
Live free . . . because YOLO!
~Caroline Luelf