Tag: Sarcoma

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.

 

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!

 

I can’t believe I’m telling you this…

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I will never forget that phone call for as long as I live. A week earlier I had undergone an open incision biopsy of a hole in my pelvic bone. (The miraculous story of how they found it in the first place is a story for another day.) My fiancé was met by the surgeon, following the biopsy, with positive news. The preliminary pathology showed nothing abnormal. I should expect a call in the next week giving me a clean bill of health and we could get on with our lives (and wedding plans). What actually happened couldn’t have been further from those sentiments.

The phone conversation went like this. “This is Dr. X. I can’t believe I’m telling you this.” The next sentence was communicated as one run-on thought. “You have Undifferentiated Pleomorphic Sarcoma of the pelvis, don’t google it!” No breath, just one run-on thought. He proceeded to explain it is a very aggressive and very rare form of bone cancer. It is so rare, in fact, that there is no approved protocol for treating it. They would do all that they could, but I had to enter treatment immediately. When I asked about survival stats there weren’t any, just a guess. Maybe 30%. I remember asking if he could provide me with a name of anyone who had received this diagnosis and had survived and he didn’t know of one. What was my first emotion? Hopelessness!! It’s so rare you don’t know how to treat it? It’s extremely aggressive, so I have to start something right away? You can’t point me to anyone else who has gone through this journey and has survived? I am here to tell you there is someone who has gone through this and has survived, me!! Doctors, no matter how well meaning, are not always right. I know this may be a new concept for some of you, but it is the truth. They only know what they know and new things are being discovered every day (not to mention determined patients who refuse to give up). So hold onto hope. There is always hope!!

 

Why am I blogging?

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At times in my life when I find myself in situations that feel bigger than I can possibly navigate on my own and I’m feeling hopeless, I search for just one other person who has walked a similar road and has emerged on the other side still standing. I tell myself that if even one other person has lived through my situation, then there is a chance I can too. It is not enough to feed myself positive affirmations like “I am strong, I am a survivor.” I need to actually find another human being that I can talk with, to see how they did it and what worked for them. My desire for this blog is that I can provide that to others who may be in similar situations.

I remember so clearly when I was diagnosed with Undifferentiated Pleomorphic Sarcoma of the pelvis and called the American Cancer Society. I asked for any information they had on this rare form of bone cancer and if they could provide a contact of anyone who has survived this diagnosis. They could not. I asked my Orthopedic Oncological Surgeon the same question. Nothing. I googled it. Still nothing. I am here to say that diagnosis is not a death sentence!! I am still here!! There is hope!!