Rollercoaster Ride

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Sometimes these posts will be so raw. We both set out to share this journey honestly. We wanted to bring the truth and reality to words so that we might help others to not feel alone… this is a very lonely road at times. Through this experience we have met people who have lived through the journey of cancer or illness… forever changed. Faith carries us through so much… even though there is a daily struggle as to why. Peter and I just found each other, we are soulmates in every sense. We will have our first anniversary in just a few days… what a year it has been. Two days after we said our vows in a beautiful ceremony we went to see Peter’s brother Steve and knew he was failing. Steve left us all on our one month anniversary.. and Peter”s blood work was off the following month, he was diagnosed 2 months later. The days since have been a blur of Dr appointments, calls, tests, research & getting into a clinical trial. He said the day he was diagnosed he wouldn’t do chemo… and thankfully his doctor agrees it is not in his best interest with CLL. Peter boldly made the choice to take part in a clinical trial… I support his decision 100%. We had to fight to get him in one… as the insurance companies in this country don’t want to pay for clinical trials… only chemo. We have had our fingers and toes crossed since day one of the trial that he would have a smooth journey.. there is so much promise with both the drugs he is being given. The trial is using them both together for hopefully an even better effect. He is presently in his fourth month of treatment and pretty steadily since just before he started his 3rd month ( Christmas week) he has felt crappy. Flulike, achy, nauseous, headache, weakness..and increasing utter fatigue, and shortness of breath. Last night I watched him shake out a blanket on the couch and huff & puff to catch his breath. He hasn’t been able to work… and now after feeling so awful for so long it starts affecting the mind. It is a daily battle… one that could easily drive one over the edge. We spoke at length about how Steve was so private about his inner battles… his attitude was so up most of the time… much like Peter… but the battle is so real. Peter & I made the decision to be open and honest at all times about this journey, no surprises, no punches held back. The fact is the drugs are doing exactly what they are supposed to do. Kill only the cancer cells.. and leave the rest alone. Amazing medicine… bittersweet twist… his body just seems not to tolerate it. His blood counts are so great it is hard to swallow. We are so blessed to have such an incredible doctor taking care of Peter, and he does a great job with me as well. I always have pages of questions.. from all that research I do. A few weeks ago we were emailing back and forth regarding how crappy Peter was feeling and unbeknown to us he was out of the country and still caring and setting things up here. Just as the struggle before starting a clinical trial was overwhelming…. now comes the part where decisions need to be made again. His doctor has done some great things to try to help Peter feel better… an infusion called IVIg, (which is immunoglobulin designed to improve his immune system), blood work (testing for more things than I can begin to tell you)…… the antibiotics haven’t helped, or the steroids… He has been tested top to bottom. CT scans show no progression of his cancer, pulmonary tests & an echo cardio sonogram have ruled out issues with his heart & lungs.… what to do.. time is ticking.. and he just keeps feeling worse. Now as a final option he will take a “drug vacation” from one part of the trial treatment to see if it is a reaction to the drug that is causing all of these issues. If he improves we will know for sure that the drug that has caused his leukemia to be knocked back into submission is also knocking Peter down so hard that he has no quality of life. It’s a terrible scary conundrum to be in. If he feels better off the drug then he will not be able to continue in this clinical trial, and there will be less options on his treatment plate to treat this disease CLL. It truly is a day by day rollercoaster for Peter and myself. Watching my love feel so awful for so long has been just as painful to me as all the physical symptoms have been to him. Being the spouse or partner of a loved one with cancer or debilitating illness is so painful. It’s a terrible thing to feel so helpless. The emotional struggle is there too at this point. Staying mentally positive through this time has been a bit more of a challenge for us both. We continue to hold onto our faith and each other. We titled this blog “Our journey through cancer” .. the road is bumpy but together we will get through this … it’ll be so beautiful on the other side.

12 thoughts on “Rollercoaster Ride

    1. peteandheather

      Thank you so much Stephanie!! We all have a bit of warrior in us… Even when it feels like the tank is low. We feel all the positive energy… It’s amazing!! We are so grateful!! XO😘

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  1. leslie

    Today in Vt the breeze is warm and the air so fresh. I am sending this down to you both. A fresh day filled with clear energy. A day of Peace, to heal. xoles

    Liked by 1 person

  2. Richie Rein

    My thoughts and prayers continue for you both. I think of Steve all the time and miss him greatly. It is because of Steve that I know Pete and now you Heather. A more loving and beautiful family I’ve not met. May G-d give you the strength to fight this decease. My sincere hope is that Pete will beat this thing and you guys will grow old together. Remain ever faithful!

    Liked by 1 person

    1. peteandheather

      Thanks Richie! Steve is with me. I feel his presence often. I miss him so very much. He was my ‘go to’ and sure would love to be able to call him and hear his words of love and wisdom.
      Thank you and Linda for your love and support. This is a journey THROUGH cancer and I will be victorious in fighting this beast! ~Pete

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  3. Judith M. Holler

    What an incredible story!! Love, illness, faith, and so much more!! How ironic you two found each other after some years. I have a similar story..my sister reconnected with a man who was a teenage boyfriend of hers. She and Charlie had ten wonderful years together. She lost him suddenly this year. It seems reasonable to wonder if they might have stayed together years ago if things would have been different?? Going along this thought path you see that the children you have and the experiences you’ve learned from would be changed. This is where I believe things happen for a reason.. Good things and not so good things. My heart is with you!! Judy

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    1. peteandheather

      Indeed God has a plan for us all. Every interaction we have with anybody and everybody has the potential to impact our lives even if we don’t ever notice it! We are continually shaped and molded by life events and interactions with others. I find this so fascinating!
      Thanks Judy for your love and support! ~P

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  4. jerri benjamin

    Heather, difficult to know what to say, but amazing the way life moves -so fortunate you have found each other. You have the most beautiful smile, that alone is helping him I am sure! My heart is with you both.
    Jerri benjamin

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    1. peteandheather

      Thank you Jerri!!I miss you so much!!! You’re so sweet!! Life is a journey for sure…Our story is an incredible one in so many ways…We are both truly blessed to have found each other…finally… richness of heart & soul!! Together we are doing and will do whatever it takes to kick it!! I have spoken of you many times with Peter, telling him about how much of an inspiration you have been. I hope all is wonderful in your world!! XO

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