Wednesday, August 8, 2018

How NOT to Float the Boise River!!

As many of you already know, our grandkiddos were visiting from Arizona, last week. As usual, our days were full of fun and laughter, and activities that are on a "must-do" list.

One of our favorite summer activities is to float the Boise River. It is a six-mile float that takes approximately two to three hours. For this float, we were a group of eleven; our grands and our daughter-in-law, and her brother and his family. We had three rafts, and one person on a paddle board.

We filled up our rafts at the fill station, made sure we had the appropriate number of life jackets and headed down the river. I must say, that every time I get on the water, I wonder why I don't do it more often, it is just so relaxing and enjoyable! HA!

After several hours of floating and chatting, enjoying watching the kids,  the baby ducks and other wildlife, we were nearing the end of our time on the water; it was then that Joe and I got hung up on the edge of the river; you see, while most of the float is just that, a float with little effort, there are a few tricky areas that actually need attention. There are rapids and undertows that sometimes require more effort to stay in the right area of the river, to avoid getting pulled towards the bank.

It seems as though this happens at least once, every time we float the river; and that day was no exception. We hit the bank, and I heard Joe's paddle snap; never a good sign, but we did manage to get turned around, and I pushed off of the bank, with my feet, thinking that all was good, once again. As we headed back out towards the center of the river, Joe said, (from behind) "We aren't going to make it! We are going to sink!"

My first thought was, "Great!" My second thought was, "I wonder how far we are from the end?"
Somehow we managed to get close to the rest of our group, and  I asked if anyone had something that we could use to "bail out", thinking that would solve our problem; but evidently, there was no magic bucket! I think that they did not believe that we really were in serious danger; but it quickly became apparent, just how much water we were taking on, and that we truly were going to sink!

The rest was a bit of a blur, but I remember my daughter-in-law's brother trying to desperately get me into their raft, but because we were so low in the water, and his raft was so high, I could not launch myself into their boat; things were getting "real", quickly!

He had no choice but to stay in his raft with the kids, and I watched our group quickly float down the river, and out of sight.

Somehow, I found myself standing in the middle of the rapids, in the middle of the river, on two rocks;  I was upriver, holding a small backpack with our car keys,  camera,  wallet, and other essentials, such as chocolate chip cookies, while Joe was down river, with the deflated raft between us.

As I am standing there, with water rushing down the river, my mind is racing; I do not know what to do. After a few moments of trying to stand up, hold onto the raft and the backpack, it becomes clear that something has got to go. I tell Joe that I cannot hang onto the raft, that the river is pulling the raft away from me, too strongly, and I cannot hang on, any longer. He says, "Well, then let it go!"

So, I did! Guess what happened?

Yup, Joe, and the raft were swept down the river, and I was left standing in the middle of the river alone! Now, what???

First things first; I turn around so that I can see what, and who is coming towards me. The rocks are slippery and unstable; I am standing in about two feet of rushing water; I do not know what to do. Looking back, I find the conversations that you have in your head quite amusing, when in a dangerous situation; I was truly alone, with only the voices in my head. They were a jumbled mess of wondering what the heck to do!

Shortly, I see rafts coming towards me. I think, GREAT! Someone will certainly "pick me up" and I can float to the end of the river with them. I will be rescued; I will be saved! I stick out my hitchhiking thumb and start saying that I need help.

Oddly enough, seeing an old lady in the middle of the river startles some, and confuses others. They start to paddle around me before they get to me, and as they are passing they say, "Are you OK? Do you need help?"

Duh! REALLY???? I answer, "No! I am NOT OK and YES! I need help!" As they pass me by....too late to help. I watch as raft, after raft float by me and I wonder what will happen? Is there a rescue team even in place for situations like this? I can't be the only person that has ended up in the river, right? Will someone report an old lady standing in the river to someone? Is there a someone that will help? Talk about feeling all alone, up a creek, without a paddle! lol

As I continue to stand in the rushing water, surrounded by rocks, the rocks that I am standing on continue to shift, further and further apart. I know that eventually, they will be too far apart to stand on. I try and re-adjust, but the rocks are so slippery, and so wobbly, that I just stay put.  At this point, I am beginning to assess my situation and options and I truly do not know what to do, I was shivering then and I am shivering now, just writing this down.

I was truly beginning to get scared and wondered just what was going to happen, just how long would I be able to stand there, and what exactly happens when standing is no longer an option? Should I try to turn around and sit down and let the water take me? Should I try to walk further downriver? Should I just continue to stand there and pray for rescue? I just did not know.

Well, it wasn't long before the universe made that decision for me. As luck would have it, coming towards me were three guys on inner tubes; they were locked together, deep in conversation and did not see me. I began to yell, "Help! Help!" and by the time they heard me, it was too late!

They ran right over me! Knocked me into the water and drug me across the rocks. I had one leg in front of me and one behind, I was being banged up and tossed over the rocks like a rag doll. I looked up long enough to see their horrified faces, further down the river and then they were gone.

At this point, I had lost all control; the river had taken over and my mind was racing. I didn't want to be the old lady on the news that drowned in Boise River, so I knew that I could not panic. The thought that kept going through my mind, over and over was, "Keep your head above water, and don't let it hit the rocks!"

I managed to get both of my feet in front of me and continued to slam into the rocks, heels first, then bottom, then elbows. I figured that as long as I kept my head above water, and did not allow it to hit the rocks, that I would survive. I knew I was going to be banged up, but I also knew that bones, muscle, and body heal. Those rocks were hard, and the force of the water was so strong, that I had no choice, but to "go with the flow!"

I quickly realized that this is how people die when they find themselves in rushing water; it is bad enough that the water is quickly carrying you downstream, but the most dangerous part is all of the rocks and debris that it slams you over.

I tried my very best to remain calm and kept repeating to myself, that I was aware of the danger, and that I could float, and that eventually, I would get to a calmer part of the river, and hopefully maybe even make it to the end. Most importantly, I remembered not to panic!

I was also hoping and praying that someone had reported a crazy lady in trouble and that someone would come to my rescue. I guess you could say that I was praying for a miracle and my life.

Eventually, help did arrive, not intended help, but help just the same; I am not exactly sure how it all happened, but I saw a tube within reach and I grabbed the handle. It was a man and his son, hooked together, on inner tubes. I had grabbed the man's tube, and said, "Oh, my God! Can you help save me? Our raft sunk and I don't know what to do!"

He told me, "Don't worry, we've got you now. Can you get your leg up on our raft?" Hahahaha! That would be a big fat NO! I told him that every muscle felt like jelly, and could I just hang on?

He told me to keep my legs up, as best as I could, and we hit more rocks; at this point, I think I was a bit numb and didn't feel pain, just me actually hitting the rocks. I did manage to hoist myself halfway up on to his inner tube, where I thanked him profusely. I told him what happened, and he told me not to worry, and assured me that everything was going to be OK, that they would get me to safety.

Shortly, he said, "Is that your husband on the bank?" I looked around and there were Joe and Joey: out of the water. Apparently, somehow Joe had managed to get to the side, and Joey, (my daughter-in-law's brother) had managed to stop his raft, a bit downriver, and had come back to look for us.

I said, "Yes" so he took us over to the side of the river, and "dropped" me off! Yay, for dry land, but not yay for the bank of rocks that I had to climb over to get there. They were loose and my body was like a shaking bowl of jelly. I could barely think, and was so relieved that I was alive, that everything seemed to move in slow motion.

At some point, I realized that I still had the small backpack and handed it to Joe, so that I could climb up the bank of rocks. It was then that I remember thinking that it was going to be the first thing that I let go of, in case of an emergency! haha Like being washed downriver wasn't an emergency! Shockingly, I still had the backpack, my sunglasses, and even my hat!

Once I reached the green belt, that runs along the Boise River, I don't remember much; I remember thinking that we still needed to get to the takeout area of the river to rejoin our group. I also remember wondering how far that was, Joe was already headed in that direction, so I just followed along; apparently I was "complaining"  and I remember Joe saying that it was beyond a fence that we could see, and that as slowly as I was walking, it would take a week to get there, so I said, "Well then maybe you should just go on without me!"

To my surprise, that is just what he did!

So here I am hobbling down the greenbelt, alone; the first thing that I realize is how great adrenaline actually is, and how horrible it is when it starts to return to normal. I looked down and saw that my feet were pretty banged up, and noticed that every single step was starting to hurt more and more. All I could think of was "Bueller, Bueller..." (think "Ferris Bueller" principal walking down the road, after being beat up)

Eventually, I managed to stop a bicyclist, and asked them just how far it was to Ann Morrison Park, where they took the rafts out; she told me that it was at LEAST one mile. One MILE???  I knew that there was no way that I was going to be able to walk that far, on my feet, as they were hurting more and more with each step.

I once again, I went into that "What am I going to do mode?" I was barely hobbling along at this point, and as I was contemplating my options, I saw Boise State University just up ahead; I thought that if I could make it there, that a bright light would come on, and tell me what to do. I wondered if I just sat there and waited, that eventually, my group would be able to find me; or not?

Once I reached the parking lot, I saw a young man, thankfully, standing near his car. I began to hobble towards him, as fast as I could go. I said hello, and asked whether or not he would be interested in helping an old lady who was in desperate need.

I told him that I needed to reunite with my family at Ann Morrison Park, that my raft had sunk, and I was stranded: he asked if I wanted to call them, and I quickly realized that I did not know my daughter-in-law's phone number and that our cell phone was likely in the car, at the top of the river. So much for modern conveniences, right? lol

He told me to hop in his car, and that he would take me there, his name was Andrew, and he was my second angel of the day. He drove me to the park, where I reunited with the rest of my family. I could not thank him enough, I was so appreciative! I do not know what I would have done without him!
I think I was in a bit of shock, of the whole situation and was amused at how everyone just went on about their business, in a matter of fact sort of way! Thankfully, my daughter-in-law listened to my tale of woe, which helped me to regain my senses. We laughed about the craziness of the situation, as I was still shaking inside.

Looking back, I am grateful to be alive, and I realize just how important it is to keep your wits about you in a dangerous situation. And when being washed downstream, be sure to keep your head above water and don't let it smack any rocks, don't fight the current and do not panic. Point your legs downstream and hang on for the ride!

Also, be grateful for your angels; they often show up when you least expect them and more often than not, they are complete strangers.

Never forget how quickly life can change; one moment you may be floating peacefully downriver, and the next you may be in for a fight for your life. Live each moment with gratitude and be ready to jump in with both feet, at all times.

I thank God for keeping me safe and allowing me to be here to share this adventure. Life is quite a ride!

On a side note, other than being extremely bruised and banged up, I am OK. I had to crawl around on my sore knees for a few days because my heels were so badly injured, but the best news of all is that my surgeon, who repaired my rotator cuff nine months ago, did an AWESOME job!!! My shoulder is 100% intact!

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#lovemylife #cancerthriver #livingwithcancer #chronicillness

Thursday, June 14, 2018

Bosulif Update: The New Wonder Drug!

I started taking Bosulif, a TKI medication, last December 2017. This is one of the medications that is used to treat Chronic Mylogenous Leukemia, which I have been battling since February 2011.

I had previously been on Sprycel since diagnosis, but the side effect, pleural effusion, became more than I or my lung could handle; hence the switch to Bosulif.

To further complicate matters, my PCR; the test used to measure the amount of disease in my body had climbed from .042. to .972, which doesn't seem like much, but in the world of a CML patient, it is "scary huge"!

Starting a new medication is always scary, as you are wading into uncharted waters; how will my body react, and will it work?  Bosulif was no different. In the beginning, I was MISERABLE!! I was so sick; constant extreme nausea; the kind of nausea that makes you not even want to swallow your own spit, for fear of vomiting. I always premedicated with Zofran, an anti-nausea medication, which helped, but did not completely control the nausea.

I began using CBD oil (no THC) 300 mg, and sucking on Preggie Pops, along with the Zofran; this seemed to help tremendously. That, coupled with the fact that my PCR dropped to .06, and I was beginning to be a happy camper, once again!

Fast forward seven months, and I am happy and proud to say, that my body is finally adjusting to Bosulif!!!

Hallelujah, Amen!!

I have only taken two Zofran, during the past two weeks; the CBD oil and the Preggie Pops seem to be all I need at this point, and I am SO grateful! Very little nausea, and no diarrhea! I was a bit fearful to stop the Zofran, as I believed that it counter-acted the diarrhea aspect of the Bosulif, due to the fact that it can cause constipation, but it seems that the Zofran has helped me to adjust to the Bosulif and has become an "as needed" medication, instead of a "must have."

I am still splitting my 400 mg, per day dose; into two 200 mg doses, twice a day; this is working for me.

I am SO grateful; I am seriously almost giddy! And to top all of that off, my latest PCR test came back at .06!!! Once again below the .1%, coveted number! Thank you, Bosulif!

I am one lucky girl, and so glad that I FINALLY made the switch! Being brave is harder than you think; it takes, courage, and sometimes a good kick in the pants! It is difficult to give up on a medication that has saved your life for six years, not knowing whether or not the new medication will do the same.

Some of us accept a change in medication more easily than others; I needed to be pushed off a cliff! Fortunately, there was a safety net, to catch me at the bottom.

Be Brave, Be Fierce and Be Grateful!

Blessings to all of you Warriors!

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#chronicillness  #bebrave  #chronicmylogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml

Saturday, June 9, 2018

Without Clinical Trials:I Would Be Dead!

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much-needed awareness about the power of breakthrough research.

Early morning, February 9, 2011; the telephone rings, I answer. This is what I hear: "I am sorry to have to tell you this, but you have leukemia."

My first response is, "What?"

My second response is, "Now what?"

And so the journey begins.

My journey is not unique, it is not uncommon and I do not travel it alone. It has been a journey filled with twisting, winding roads, which have led me into the depths of despair, the valleys of normalcy, and the mountain tops of elation.

I have Chronic Mylogenous Leukemia; keyword  "chronic." Chronic meaning I will have a lifetime to understand and learn about this disease. Chronic meaning I will have a front row seat, to the ongoing research, in a cure for CML. Chronic meaning I will live to see the results of the many clinical trials, that are currently being conducted, with brave CML patients.

The first clinical trial for Chronic Mylogenous Leukemia, began in 1998, with a drug named Gleevec; through its success, Gleevec was FDA approved, for treatment of CML, in May 2001. This groundbreaking discovery has vastly changed the outcome of CML patients from a certain death to a bright future; one that often rivals the life expectancy of someone who does not have cancer.

Choosing to be a pioneer, in a clinical trial, is a daunting decision. There are so many unknowns and so many potential risks and dangers, yet the glimmer of hope often tips the scale. For many that enter clinical trials, the trial itself is their last chance; their last hope to beat the odds.

Knowing that they are facing imminent death, people courageously enter into clinical trials with much optimism; understanding that they are entering uncharted waters. They know that their outcome is not always favorable, but deem it necessary, and worth the risk. They know that the information gathered in these trials, is not only valuable, and their best chance at survival, but significant to research, which will help the lives of those who follow in their footsteps. I truly believe that these people are true warriors.

Not all clinical trials target patients who are in the end stages of their disease. Currently, there is an exciting new clinical trial, for people with chronic mylogenous leukemia. It is a trial monitoring whether or not a CML patient (who meets very specific criteria) can safely discontinue their CML treatment, and remain in remission. And, if their disease does become detectable once again during this trial,  can the leukemia can be put back into an undetectable state, once resuming treatment?
There are many people interested in the long-term outcome, to these trials.

I believe that patients' may have influenced this particular clinical trial because I believe that Patients Have Power! They have a voice, and they have the power to say, "I do not wish to remain in treatment, if my leukemia is undetectable, and the treatment is no longer necessary."

Because CML is chronic cancer, and because CML patients are now living normal life spans, many of us have had ample time, to research our disease. We are well versed, curious and determined to "find a cure." We want to return to our "old" normal; a normal without cancer and without side effects, from its' treatment. We want to live our best lives, without the financial burden of our life-saving medication.

Not everyone will be able to become treatment free, but I admire those, (who fit the criteria)who are willing to take the risk and enter a "Treatment Free Remission Trial," in order to give us all hope. The information gathered, will aid researchers in determining who will be able to someday discontinue treatment, and who will not; and the "why" it will be successful for some, and not for others. The goal is to treat CML patients, with the hopes of discontinuing their treatment, in the future.

Fortunately, there are clinical trials, and people willing to participate in them,  which may allow this dream, to become a reality.

I greatly admire the brave souls, who are willing to take calculated risks, in order to aid researchers, in their quest; to find cures for disease. Without these valiant pioneers, we would not be witnessing so many medical breakthroughs, and I would not be alive, today.

I believe that Patients Have Power, and as a patient advocate, I strongly believe that we should use our power, for the greater good. No one chooses, or expects that their own "good health" will change or decline, and we often take our own "good health" for granted; right up until the phone rings, and you hear those words, "I am sorry to have to tell you this, but you have leukemia."

I am grateful to for creating the opportunity to speak out on behalf of clinical trials, and believing that Patients, truly do, Have Power!

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#clinincaltrials #Patientshavepower #research #treatment #leukemia #lovemylife #cml

Bricks for the Brave!!