Month: November 2017

Reuniting with my first love

/ Leave a comment

There’s something very special about first loves.  I experienced it back when I was 15 and it positively changed my life from that point forward.  We were both part of a Christian singing group and had the wonderful opportunity to tour locally in New York state, various locations around the United States, and in Europe.  But as young kids often do, I wanted to see what else was out there, so after a year and a half together, I dumped him.  We went our separate ways.

Fast forward 35 years and many separate life experiences (mine in Pennsylvania and his in New York).  Our singing group had a reunion (coincidentally or not, organized by my first love) and I decided to attend.  We knew almost immediately that our feelings for each other had never really changed, but how could this work?  To make a very long and emotional story short, 11 months later we were engaged.  Two months after that I received my cancer diagnosis.  A lesser man would have backed away, after all this is not what he signed up for.  Not my guy!  He pulled me close, said he loved me, and we would do this together.  And then he told me something I will never forget.  “I knew God brought us back together, but now I know why He brought us back together right now, so I could take care of you through this.”  We were married between chemo cycles 4 and 5, because we were determined to not spend one more minute of our lives apart.  He is selfless love personified to me and I am forever grateful.  I often think about a statement made by Mike Dooley, author of “Notes from the Universe.”  He was discussing perspective and said something like, “if you are struggling with pain in your right knee, focus on your left knee and be grateful that your left knee doesn’t hurt.  You are not denying your right knee hurts, you are just choosing to be grateful that your left knee does not.”   I now understand that sometimes reasons for hope during dark times are right in front of you (as close as a loved one).  It doesn’t remove the dark situation, but it serves as a reminder that there is hope in the midst of it.

 

Why I don’t often say I’m blessed

/ Leave a comment

It seems like every day I hear someone say how blessed they are.  It usually sounds something like this – “I love my new job, I’m blessed,” “I just booked a once in a lifetime vacation, I’m so blessed,” “My spouse is such a thoughtful person, boy am I blessed.”  It makes me wonder, what about people who don’t love their jobs, can’t afford a fancy vacation, or don’t have a spouse who hangs the moon (or don’t have a spouse at all)?  Are they not blessed?  A blessing, in that context, is something that is given to you, maybe by God or a friend.  If you are enduring a particularly difficult time, are you less blessed by God than your friend who seems to have everything going their way right now?  No.  So, for me, the phrase is “I’m grateful.”

Gratitude is not something that is given to you (like a blessing), it is something you give toward someone else.  The focus is completely different.  You can be grateful for wonderful things that are happening in your life (like a great job, wonderful vacation, or amazing loved one), but you can also be grateful for hard times, because of the things you learn.  I would never say I was blessed by having gone through cancer, but there are aspects of that time that I am grateful for.  It showed me how loved I am, how strong I am, and how faithful my God is.

Robert Emmons, Ph.D., writes: “In the face of demoralization, gratitude has the power to energize. In the face of brokenness, gratitude has the power to heal. In the face of despair, gratitude has the power to bring hope. In other words, gratitude can help us cope with hard times.”

So, during this Thanksgiving season, remember all the things you have to be grateful for (whether they are blessings or not).  That is sure to bring some hope, no matter your current path.

 

Daily Radiation and Chemo Induced Peripheral Neuropathy

/ 3 Comments

Two weeks after my final round of chemotherapy ended 6 weeks of daily radiation began. By then I was just putting one foot in front of the other. I have heard horror stories of the pain and burning that radiation caused. If I’m being honest, my radiation was not as bad as I anticipated. Yes, I had some burns, deep aching, and additional exhaustion, but compared to chemo, not that bad. It was during these 6 weeks that the Chemo Induced Peripheral Neuropathy symptoms began. At first I didn’t know what was happening. My hands and feet were getting numb and feeling really heavy. Then they started tingling and burning. By the end of radiation I was barely able to walk because of the total numbness and excruciating pain (yes, at the same time) and was shuffling like an old person. The constant pain was so bad I barely got out of bed. I didn’t know how I was going to live like this (let me add that I was still terribly sick and weak from the chemo). My Oncologist sent me to a Neurologist specializing in Neuropathy. After evaluating me she asked what was the dose of chemotherapy drugs I was administered. When I told her about the high dose of Cisplatin she shut my chart and said there was never going to be any improvement. This was going to be a chronic condition I would have to learn to live with. Even at half the dose I was administered the Neuropathy would likely be total and permanent. She prescribed a high dose of Lyrica (which was later changed to 2400 mg/day of Gabapentin), said there was really no need to schedule a follow-up because there was nothing she could do, and that her office would continue to refill my prescription as long as I needed it (as in “forever”). Doctor 1, Hope 0. My logical brain understood what she said, the Cisplatin dose was twice the dose needed for permanent damage, this pain was my new normal. I didn’t want to accept it, but what choice did I have? After all she’s the expert. This is a question I still struggle with every day. You see, this was almost 4 ½ years ago and I am still in chronic pain. But I now believe that that doctor may know what she learned in Med School, but she doesn’t know me, my body’s ability to heal, or my God. I have spent the better part of the last 4 years researching alternative healing modalities and I have tried quite a few. I don’t mind being a guinea pig in this lab called my life. I will biohack myself until I heal this Neuropathy or run out of time on this planet (I will share the different modalities I have tried and what my thoughts/results are in future blog posts). You see, I truly believe that if I have hope it’s not over yet!

 

High dose Cisplatin and Adriamycin

/ Leave a comment

Five weeks after surgery I met with my Oncologist and the recommended course of treatment was high dose Cisplatin and Adriamycin, four days in a row, every 3 weeks, for 6 cycles. And then the words that sent a chill down my spine. “We will take you as close to death as we can every cycle and hopefully bring you back.” REALLY?!? I realize this is a really rare, really aggressive form of bone cancer with not enough of a sample size to determine an approved protocol, but really? I had only two choices, do it with determination and fight or pass on it all together. I determined that if the cancer came back and I had not done it I would always wonder if that would have made the difference. So chemo it would be. What followed was 18 weeks of what Melissa Etheridge described as “descending into hell.” During that time my bloodwork was so dire that I received Neulasta injections each cycle to bring my white blood cell count up from almost 0 (once it was measured as 0.1) and 10 blood transfusions of red blood cells and platelets. Three of those transfusions were on my wedding day. I went in for what was supposed to be routine bloodwork after cycle 4 and they immediately sent me to the hospital for 3 blood transfusions (2 platelets and 1 red cells). Good thing we were only planning to have 6 guests (no immune system, no guests) at our home for the service and my husband’s sister was the minister. My point is, no matter how horrific it was (and it was horrific), I’m still here! Again, don’t let the people in white coats steal your hope. If 1 person has survived it, it is possible and I have survived it. Always choose hope!!

 

Let’s rejoin our program, already in progress – Surgery and epidurals and headaches, oh my!

/ Leave a comment

When I started this blog I had planned to share some of my cancer journey experiences with you. Experiences, that in hindsight, showed how hope was possible, even in seemingly hopeless situations. I had barely scratched the surface of my story when current events came crashing in (enter unexpected scan results and a biopsy). When you’re a cancer survivor, unexpected diversions become a regular, and not always welcome, part of your new life. Now that I have thankfully received good news on my biopsy (thanks again for all your positive thoughts and prayers), I want to rejoin my story where we left off -sitting in the surgeon’s office, hearing about my scheduled pelvic resection because of a rare bone cancer. If you want to refresh your memory on exactly what had happened to date, feel free to re-read my first 3 blog posts. Okay, here we go…

The morning of surgery my fiancé, sister, and I arrived at the hospital bright and early. Actually it may have been dark and early. I don’t remember. They prepped me and took me back. At this point let me mention that this was being done at a teaching hospital, so Residents were always present. They decided to start me off with an epidural, to help with pain management after the surgery. After all they were hacking out a section of my pelvic bone! This ended up being the worst decision I allowed that day. You see, a Resident was the one trying to place the epidural and she missed her target twice. Instead she drew spinal fluid both times. After the second time the attending physician said “lay her down” and that’s the last thing I remember until the recovery room. The reason I say this was the worst decision I allowed is because of the severe spinal headaches I had from the leaked spinal fluid, which changed the fluid pressure around the brain and spinal cord. For almost 2 weeks I could not lie flat nor could I stop vomiting for days. Like the pelvic resection was not enough to deal with. But I did survive and 6 days later I headed home to recuperate. It was never far from my mind that this, although a big enough deal by itself, was only step 1 of my battle. I was determined, but if I’m being totally honest I don’t know that I was hopeful. The future seemed impossible to imagine. I tried to keep my eyes on the only one who not only knew what the future held, but held the future. I clung to the truth that God’s mercies are new every morning. He promised to never leave my side. That was a glimmer of much needed hope.

 

Fight the urge

/ 1 Comment

Today’s blog post is my version of a Public Service Announcement (PSA). I have been asked many times, having gone through cancer myself, what friends should say when someone they know is diagnosed with cancer. There are always the good, old standards – “I’m so sorry” – “If there is anything I can do, just let me know” – “I’ll pray that you will feel God’s loving presence with every step, as you together walk the difficult road ahead of you.” While providing words of comfort is important when a friend or loved is on their cancer journey, what you don’t say can be even more important. Let me explain.

I can’t even begin to estimate how many well meaning people have said something to me like –

I know how nervous you must feel coming up on your 4 year scans. My mom had cancer and she was really anxious for each scan, up to that magic 5 year mark, but we celebrated with her when she was still clear at 5 years. I mean, it came back after that and she eventually died of cancer, but I remember how nervous she was before scans and how great she felt each time she got clean scans.

Although I believe they are truly trying to express empathy for what I’m going through, sharing a story of someone who, eventually, died of cancer is NEVER okay. We all know people who have died from cancer, I am not in denial, but FIGHT THE URGE! It doesn’t help.

Another spin on the same story, that I just experienced recently, might drive this point home a little more clearly. Someone mentioned that my story sounded just like their son-in-law’s, and he had a blog too (providing a link to his blog). I assumed, incorrectly, that it must be a blog on encouragement during tough times on his cancer journey. Instead it was his experience with the same, rare cancer that I had. He recently had a biopsy, after a concerning finding on a scan, which showed his cancer had returned and metastasized. He probably only had a month or 2 left to live. Reading of his reoccurrence, while awaiting my biopsy, sent me into a panic. Why would anyone share his blog in the comments of a post discussing my fears about an upcoming biopsy needed because of a finding on a scan I recently had?!?! How could that possibly be a good idea? Now I believe this person meant no harm, but, again, FIGHT THE URGE people!

Words are powerful and soothing when used to encourage and build up, but they are powerful and destructive when chosen carelessly. I just ask that you pass words you say through a filter of hope and encouragement, so we can all choose hope a little more easily during seemingly hopeless times.

This ends today’s PSA.