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…