Month: October 2017

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…

 

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!!