What a year it’s been

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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& treatment options otherwise you could very well be placed in a treatment that could potentially be archaic and outdated.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

7 thoughts on “What a year it’s been

  1. Karen Camp

    Thank you for sharing! Your tenacious spirit is inspiring. I’m so glad things are working out for you. Pete you are so lucky to have such a strong wife who won’t stop looking for answers. I will continue sending prayers your way! Both of you have a way with words that I think many would find helpful and inspiring. I have gained insight through them. Than you for sharing. God Bless, Karen Camp

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    1. peteandheather

      Thanks Karen! We have received many little blessings along this journey, so if any of this helps others, that’s a real bonus! We are always touched when someone like yourself pays that kind of compliment. We get so focused on our little world that we rarely realize how it effects others. Thank you for your love and support! ~P

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      1. peteandheather

        Thank you so much Karen!! We are just so thankful to be able to help anyone who might read about our experiences. I’m so glad we can offer a bit of insight. Thank you so much for your kind words & continued prayers. We have felt so lifted up through all the prayers…honestly, on infusion day it feels like our room has a glow eminating out into the hall. XO

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  2. Sally Hunt

    You express so well how important it is for the patient, and his/her partner to feel and be part of the team working to get the patient well. Feeling powerless isn’t helpful, feeling powerful gets things done! 🙂 Thanks for sharing your journey. XO

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    1. peteandheather

      Thank You Sally! We absolutely believe that it takes a team working together to fight as well as find peace in all of this. This is why it is so important to find the right doctor… hey we are paying them… they need to communicate effectively and treat us as human beings. We are not just a file number. The doctor who diagnosed Peter is not who we stayed with. He openly admitted that he had heard there was talk of new treatments available, but he stayed with the chemo cocktail option… and there was no worries since Peter was stage 2 and we could wait. We didn’t feel comfortable with that option, and Peter said he would not ever do chemo so we requested a second opinion. The doctor we met at Ohio State immediately felt incredibly caring, intelligent, and also an excellent listener. Very open to everything we had to say and ask. as well as numerous alternative options… and he had all the facts & figures written up to show us everything. He staged Peter at stage 4… and explained why ( cancer of the blood… this blood runs around our whole body). I arrived with my 5 pages of questions.. front & back… he didn’t bat an eye. We were introduced to his NP & it was clear… we all work together as a team. When Peter was so ill this winter, he returned emails to me from out of the country… at 10:30 at night.. and asked what we felt comfortable with.. truly allowing Peter & I to direct our path… Talk about powerful!!! I think my next blog is going to talk about being united in facing this or any other illness. Thanks for the inspiration Sally!! XO

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  3. l galipeau

    Well said! And I ditto what K Camp said. I was wondering if you are willing to share the name of the cancer fighting herb? Blessings to you both from VT! xoles

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