Tag: survivor

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!!