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Why I don’t often say I’m blessed

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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

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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

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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!

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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

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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.

 

Biopsy results

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I want to cut right to the chase. The biopsies were NEGATIVE and my surgeon is satisfied with the sample. Praise God!! He does want to follow-up with a plethora of scans in 3 months, just to be sure. My wonderful husband stepped up again to provide all the communication during these last 2 weeks, because I find it difficult enough to live it and have no desire to continually relive it in all the updates. I truly appreciate ALL the prayers, thoughts, and good wishes from each and every one of you dear friends and hope you understand why I go radio silent throughout. I will share both of my husband’s updates, as his words perfectly express where we were after the biopsies and after the doctor’s phone call.

Biopsy day – “Hi, everyone.

Well, the needle biopsy was today, and we hope it was worth it.  It was a long, painful, anxious, and frustrating day.  It took them 2 and a half hours to perform a procedure that should have taken 30 minutes.  You can imagine how Danielle must have felt when the doctor asked for a mallet, and then a drill.  (Yes, she was awake through all of this.  And guess what… Versed doesn’t work very well.)  They couldn’t get the CT and MRI to match up, so there was never any clear target for the biopsy.  He just went in and took several samples from the area.  Who knows if he got anything useful.  All we know is that Danielle is very sore, and we’re both exhausted.  We’ll just have to wait for her surgeon to call next week.

We’re frustrated and sad that we may have gone through this awful day for nothing.  We’re scared that we may now need to do a more invasive biopsy.  And we hanging on to hope that what we did today will yield the answer that this is nothing to worry about.  At this point, Danielle is exhausted and discouraged, and really doesn’t want to talk about it, but your continued prayers and good wishes are very cherished by us.

Love to all, and we’ll keep you posted.”

Results day – “God is Wonderful, my friends! Forever praise Him!!

Danielle just got a call from the doctor.  He told her that the biopsy came back negative, and that he is no longer concerned.  This was the best possible news that we could receive.  We are elated!  We were afraid that he was going to want further tests, or an open-incision biopsy, but he is satisfied with what he has seen.

Because of this little incident, he does want to see Danielle again in 3 months, rather than the planned year, just to make sure that everything is still fine.  We’re okay with this.  He is being cautious and that is a good thing.

Our blessed, wonderful, God-given friends, you have been our faithful support through this whole ordeal.  We pray that our journey through this is dark time is coming to an end.  I hope you won’t mind if we ask you again in January to lift up a few prayers for a scan which will confirm that Danielle is truly finished with what has been the most difficult chapter of her life.

God bless each and every one of you for your love and faithfulness.  HALLELUJAH!!!!”

Those pretty much sum it up. I must admit I have been feeling like a fraud the last 2 weeks. Who am I to start a blog, that I really did feel called to start, about being a hopeful survivor? Hope has been in short supply, although prayers have not. I never want to hold myself up as having a corner on the “hope market” and this experience has reinforced how critical hope is, in the midst. I will continue sharing what I have learned about hope over the last 5+ years, but be clear on the fact that hope is not something, that once found, is constant and strong. I pray that my struggles will encourage you when you find yourselves in short supply.

 

Biopsy is scheduled for Wednesday

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Words I NEVER wanted to have to say again. I received the call yesterday that my CT guided needle biopsy is scheduled for next Wednesday.  I should arrive 2 hours early and expect to be there about 6 hours. I am not worried about the biopsy itself, although the thought of someone continually inserting a needle into my pelvic bone isn’t exactly comforting, but I am worried about what the results might show.  And if, like the last time, they find nothing from the needle biopsy, then an open incision biopsy may be next.

I am really trying to take this one step at a time, but am having a difficult time not comparing this experience to the last time and running down every possible bunny trail in my mind. When someone tells you you have cancer and that the surgery, chemotherapy, and radiation are going to be really tough, you have no idea what that really means.  That is a blessing.  Now that I have experienced it before I know exactly what it will be like and how long it will take (if ever) to return to any sort of normalcy in my life.  That information just intensifies my fear. I am looking into alternative treatments, but realize it is too early to look for other options, when I don’t even know what “it” is yet (if anything).

So I try to remain positive, but it ebbs and flows. I have a huge group of prayer warriors who are lifting me up emotionally, spiritually, and for physical healing during this time of waiting. Hope comes and goes, but I truly believe God left me here, the last time, for a reason.  I am trying to believe that reason still exists today. All prayers greatly appreciated!

 

Maybe I spoke too soon

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After the great news on Friday about my 5 year scans, I received a call from my doctor early yesterday morning.  Never a good sign!  He said the Radiologist who read my MRI saw something of concern and he agreed.  My world fell away.  I was blindsided because the risk for reoccurrence was pretty low this far out.  They are going to start with a needle biopsy.  I am awaiting the call as to timing.

I am not the type who would normally share this information while I’m still in the thick of it, but feel if I am going to be authentic in this blog I can’t be selective in what I share.  I am really trying to practice what I preach about never giving up hope, but right now I am not being very successful.  Fear is a terrible thing! I remind myself that this news didn’t surprise God, but it sure did surprise me.  Any prayers you can offer on my behalf would be greatly appreciated. And now I wait.

 

Today is a GREAT day!

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I will pick up my story where I left off in my next post, but wanted to share some wonderful news with all of you.  Today I had all my 5 year scans (mri, cat scan, x-rays) and met with my Orthopedic Oncological Surgeon.  I remain clear and now my scans move to once a year!!  God is good!!  I normally keep these scans pretty private, but decided to open up my journey to all of you with this blog, so I wanted to share this as soon as I found out (who says Friday the 13th is bad luck?). Now you can see why I keep reminding you there is hope.  The “odds” weren’t in my favor, but God had other plans. Thanks for celebrating this big milestone with me!

 

You want to do what?

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After my biopsy came back positive I met with my Orthopedic Oncological Surgeon to determine next steps. What a day that was. I thought I would meet with him, he would review all the many tests I had over the previous 2 ½ months and he’d give me his opinion. No, I had to REPEAT all the tests, with a few more thrown in for good measure, because anything older than a few weeks was not current enough information on which to base a plan of attack. So I was cat scanned, bone scanned, x-rayed, radioactive dye injected, mri’d within an inch of my life and then I found myself back in his office. The doctor came in, stern look on his face, and began. “Just so you understand the seriousness of this situation, this surgery is not a little league game, it’s not a high school game, it’s not a college game, it’s an NFL game. But it is NOT the Superbowl.” I didn’t know whether to cry or be relieved. I suppose his point was that this was really serious, but it could be worse. The hole in my pelvic bone had doubled in those 2 ½ months. Very aggressive. I was staged at 2A. He explained that he would go in and resect my pelvic bone, removing approximately a 3 inch by 3 inch section. I wondered if I would live and if so if I would ever walk again, but I remained silent with tears streaming down my face. There were no words at a time like that. Surgery was scheduled for the following week…