I missed my self imposed Monday deadline to write… it’s been a challenging week for us. I will start by saying that every single day I am blessed to spend with my beautiful husband is a gift beyond words. Had we ever only had one day together, my whole life & world was forever changed. I believe however you want to express it, it was a God thing, a universal shift, a blessing of the deepest kind. We are here together for a very important reason & journey. We are soulmates. My sweet brother in laws have nicknamed me “The Rookie” … I will just say, it’s been a hell of a rookie year… I hope and pray we have at least 50 more) Incredible high’s; eloping in Key west in February on the beach at sunset, and then getting married all over again a few months later surrounded by our families and friends… and then the incredible lows; losing Peter’s brother Steve on our one month anniversary after spending most of that first month at hospitals in Miami & North Carolina praying for a miracle.. and the following month having Peter’s blood work come back “weird”, and 2 months later this cancer diagnosis. Life is a journey… the destination is a mystery. We have to remind ourselves to let go and have faith and trust. At any given moment we could walk off a curb and get hit by a truck… we just don’t know… So we must live full and love deeply. Some things are just what they are and we do the best that we can. Sometimes it’s so damn difficult to keep the faith, but we must… it’s the only way. This brings me to what I feel compelled to blog about today. As we have both said before; we want to reach out, share, and educate people about not just cancer… any illness, and the process one goes through when living this real stuff. Peter is about to begin treatment for his cancer. It’s so overwhelming and scary. Through all of our reading and research we have seen over and over that with this particular type of leukemia ( CLL ) it is highly recommended that Peter gets into a clinical trial. The other two options are to do nothing and to do chemo. Peter said from day one he did not want to do chemo. Chemo has it’s place, it saves lives every day. Chemo is offered for this type of cancer at most hospitals.. and it certainly can prolong a patients life. It doesn’t however always give the quality of life a patient would like. They now offer lower dosage chemo, it doesn’t make your hair fall out or give the plethora of terrible side effects. In the research hospital where Peter is going it is also an option… but if they can slow the cancer in different ways they feel it’s better for longer survival and less complications. Chemo has a tendency to anger the CLL cells, which in turn makes them mutate and ultimately become more difficult to treat. Peter’s brother Steve… the last round of chemo he was on didn’t work. He had become resistant. So here we are are looking at clinical trials. Let me say this, there is great promise. There are many clinical trials out there, that are prolonging lives. Wow, is it scary though!!! Shooting darts… playing with chemistry… and life & death. To get into a clinical trial can be a bit of a challenge. First, you must be a patient at a hospital that does them. The first hospital Peter went to said they would give him chemo when it was time to treat him. Peter knew that wasn’t an option he wanted to do, so we requested a second opinion at another hospital.. two hours away. It’s worth the drive, it’s of utmost importance to really have a good connection with your doctor, and trust. Don’t just receive any information at face value without asking questions. We are so glad we made the decision to seek another option. Clinical trials are VERY specific!! Whomever develops them and writes them up sets the guidelines. The guidelines are very specific. You have to fit into every single guideline 100%. Peter has too may symptoms for one trial… and not enough for another. Last week Peter went in for the full body CT scan in “hopes” that he would have even one swollen lymph node… seems wrong to hope for that. His doctor was hoping to get him into a particular trial. His lymph nodes are not swollen…enough… we found out Monday. His spleen is extremely large ( the body’s largest lymph node), 80% of his bone marrow is affected, approximately 75% of his lymphocytes are malignant… but because his lymph nodes elsewhere are not swollen so he doesn’t fit the profile. So this week his doctor presented Peter with another option… another clinical trial. He fits into it… hallelujah right..??.. Well you tell me…Once I had some details I began doing research on the drugs. This particular trial has 2 drugs, one is approved already by the FDA, so the cost isn’t covered in the trial… wait.. I thought if you were in a clinical trial everything was covered… NOPE. This one particular drug runs $15,000 for a 28 day supply… and Peter will need to be on it indefinitely … as long as he doesn’t have any of the 2 pages of anything from mild rash & stomach upset to sudden cardiac failure,secondary cancer or some thing with the layers of dermis & epidermis separating…. I’m in a cold sweat at this point. They have to tell you this stuff, every drug has side effects. Most people don’t get the severe ones, but how bad does it suck if you’re in that small percentage. Then there is the clinical trial drug itself ( the only thing you don’t have to pay for in a trial). Now by the time a drug gets to this point it has been in the works a good 10-15 years, and this one has been tested on people in one round before now. So they have figured out what dose to give… you know… trial & error… yikes!!! Peter will need to be consistently monitored over the course of 2 days when this infusion is used… to watch for allergic reactions ranging again from mild to severe. All of these drugs will start at low doses and then amped up over the course of several months and then continue for a year. The pill that is already FDA approved.. yeah the 15K a month one he would remain on indefinitely ( we don’t even know how anyone pays this kind of money monthly for lifesaving medicine)…Of course they will take him off if he has any issues on it like secondary cancers… In the midst of the trial there will be 1-2 trips a week to the hospital 2 hours away the first month. Because he will be on a trial, anything “funky or scary” will require a trip back to the hospital. All testing, blood work, CT scans, bone marrow testing etc… are not included in trial… and if anything goes wrong with Peter during the trial… it is at the insurance company’s ‘discretion’ whether they will pay for his care or not… WHAT?!?! Well because it’s a clinical trial.. aka experimental thing… they can deny payment… because chemo is the approved treatment for cancer in general. Holy crap!!! How can we even move forward to find a cure without experimenting & research… but one false move and financially you are cut off at the knees( This country’s insurance problems are going to be the ruin of us all ). Oh, and even though Peter is approved for this trial the insurance company has to approve him being on it… How does anyone working at a desk get to decide my husbands fate??? I am struggling with what is the right choice, Peter reminds me that not making a choice is also making one… and we know what the alternative is if he does nothing… How do you know what is right… how do you live with yourself if its wrong. How do you know??? It’s been really hard battling fear this week. When we received the 20 page contract yesterday the reality of signing on to be an experiment in finding a cure became that much more real. I had a talk with Peter’s doctor, I asked him what he would do if this was his son or brother or parent, I said doctor.. one year is not enough… I want 50 years with my husband!! This doctor is wonderful, I believe in him, I trust in him to do his best… but there are no guarantees, he reminded me there is no right decision… there is only faith… Like Carrie Underwood singing “Jesus take the wheel” kind of faith…. my hands are white gripping the wheel. I’m afraid to let go… Ultimately the decision is Peter’s and I will stand behind him 100%!! We are in this together, partners all the way!!!
5 thoughts on “Love & Cancer & Clinical trials”
Dear ones, you are sailing in uncharted territory for sure! God is with you and guiding you to the next decision, and then the next…He holds you past, present and future. One day at a time. Love you!!
Baby steps willl get you to the same place you want to be. There are too many things to consider, and there are no absolute right answers. Gather, pray, open, and praise. Gather the info, pray over the options and open your heart and mind to the promptings that the Spirit sends you. Ask for help to trust God more fully, and praise Him for the grace to take one little step at a time. All will be well and good, in some real way if we let Him walk with us. Praying for your peace of mind and heart… ♡♡♡
Stephen R. Payne
It’s hard to know what to say…except I’m so glad you have each other for support as you deal with the new daily challenges. You’re both in my thoughts.
The pure love and faith that rises above these words as you so bravely share your fear and pain is so real and strong it is your guide and your light. Together you will make your way, with many behind you rooting for you, praying for you, and sending our love.
Sending you thoughts of God’s light and love. Praying for your coupled discernment as you make so many hard decisions and wishing you many more (happy and whole) days together. (I am a friend of Kathleen and Dutton’s if you wondered who I am!)