I realize I haven’t given an update in a while. Here are my
excuses: 1.) I feel overwhelmed thinking about everything 2.) I’m so incredibly
frustrated with adult medical oncology 3.) I’m exhausted and every time I have
a free moment to myself, I really don’t want to type out a blog update… I just
want to sleep or watch Netflix and escape my life instead.
Where do I begin? I almost feel like I can’t even begin to explain at this point… Like Inigo Montoya on The Princess Bride: “Let me explain… No. There is too much. Let me sum up…”
But let me try:
-May 2014: CT and PET scans at Texas. No diagnosis. Decided to give the lesions time to grow or not.
-June 2014: Back to Texas for a bone lesion biopsy. Results, non-diagnostic.
-July 2014: Back to Texas for more CTs and PETs. Lesions did not grow. Found a mass/thickening in my small intestine with minimal lymph node involvement. Still no diagnosis.
-September 2014: Back to Texas for more CTs and PETs. Scan results non-diagnostic but radiologists suspect lymphoma. Bone lesions grew, multiplied. In my hips alone, my bone lesions increased from only being 3 lesions, to being 8 lesions. Mass in small intestine grew, lymph node involvement increased. Lymph node biopsy. Result: non-diagnostic.
November 2014: I had another bone lesion needle biopsy planned and then an open biopsy in Texas, but we ended up cancelling them because it would have cost us $1600 round trip for both Brian and I to go and the no-diagnosis track record didn’t look promising. Plus, I don’t even want to think about how much money we’d already sunk into trying to get diagnosed there… So we decided to seek other, less expensive avenues and find someone here in Indiana who could do the biopsies and get me a first diagnosis/opinion, then maybe we could think about going back to MDAnderson for a second opinion.
Oh, also, my hemoglobin is around mid-11. Normally for me it’s 13-14. Hemoglobin is the stuff in your blood that carries oxygen and iron… so I get winded much more easily than usual, and it explains my pale-ness and why I just want to sleeeeeeeeep all the time. Example: the other day I took a five-hour nap. I woke up, ate dinner, and an hour and a half later went back to sleep for another ten hours… This drop in hemoglobin, unfortunately, often tends to be a pre-cursor for cancer in my experience.
So now you are all a little bit more up to speed on my situation at the moment. But wait, it gets better!
When I cancelled my MDAnderson appointments and biopsies, I turned to my oncologist here at IU to help me by calling MDAnderson and figuring out the tests they were going to do and then setting them up for here. I guess that was a bad idea? Because the next time I went in for an appointment with him, it didn’t go well and I pretty much got scolded and lectured and told that I “needed to commit to either IU or MDAnderson” because he “couldn’t practice this way” EVEN THOUGH going into this I asked him if he was ok with working with MDAnderson. So you can imagine my incredible frustration while sitting there getting lectured and having everything turned on me, like I’m some kind of bad patient who frustrates doctors and can’t make up her mind which hospital to be treated at. (The lecture was much longer and in depth than this… I’m giving you the condensed version. I still think this doctor is a good man, but I will definitely not be working with him again.)
**sigh**
So now I’m here, doctor-less, trying to find a new doctor who will take me on. Being told at every turn that I’m a “complicated case” and “you need to get a diagnosis before we can help you” or “I’m a sarcoma doctor, you’ll need to see a GI doctor for that” and then “I’m a GI doctor, you’ll need to see a transplant doctor for that”… and many, many more things that just keep me stuck. Why don’t doctors in Indiana work together? Seriously. Have egos gotten so big that we can’t work together? And in the meantime, patients are not getting answers and whatever is going on in their body is doing damage… If this IS cancer, letting it grow probably isn’t the best option. But if this isn’t cancer, best guess is that it would be GVHD (graft v host disease—where my body is attacking my transplant and trying to reject it) which isn’t a great option either.
The doctor that we met with today at Community South did not impress my mom or I at all. He came in with his mind seemingly already made up. I had brought along my reports and CDs of scans from MDAnderson. He didn’t even look at them! He decided he needed his own scans to determine if anything was growing. Even though we had 6 months of proof right in front of him that it was. And before he had come in, I had given the nurse a laundry list of my symptoms that have been getting worse. Granted, slowly. But getting worse nonetheless. You know what he said? “Well your symptoms don’t seem to be getting worse…” ….uh…. I’m sorry, what? First, this was his first time ever seeing me, so what did he have to compare it to? Second, I feel like if he had even GLANCED at my list of symptoms he would never have said that. Not impressed. Not impressed at all. But I seem to be glutton for punishment, or I’m just incredibly desperate for a diagnosis, because I’m giving him another chance. I’m going through with the scans he has ordered (mostly because I do want to see the progress on my worrisome spots) and meeting with him one more time next week.
I do want to end this post on a good note though because I really, really don’t like feeling so frustrated and stressed out.
My mama bear went into fight mode and got lots of people on the phone and gave some a piece of her mind and hopefully kicked them into gear, then documented everything and is going to be the squeaky wheel for me. She also had a brilliant idea to call some of her good friends she’s made along this long, hard, cancer-filled journey. One of her friends lives in Cincinnati and is a nurse. She gave us some really awesome and hopeful news: Cincinnati Children’s Hospital had a unit within their pediatrics unit that sees adult patients like me! Those who were diagnosed with cancer as a pediatric and cancer has followed them all the way to adulthood. I cannot tell you how hopeful I am that they will take me under their wing. The thought of being treated like a pediatric just makes me want to cry happy tears of relief. I really, REALLY hope and pray that it will work out, though I do know that however it does end up working out, will be exactly how God intended it to, no matter how hard it may seem. He knows the trials I am required to go through to be molded and tailored into who I need to be and who He needs me to be.
Where do I begin? I almost feel like I can’t even begin to explain at this point… Like Inigo Montoya on The Princess Bride: “Let me explain… No. There is too much. Let me sum up…”
But let me try:
-May 2014: CT and PET scans at Texas. No diagnosis. Decided to give the lesions time to grow or not.
-June 2014: Back to Texas for a bone lesion biopsy. Results, non-diagnostic.
-July 2014: Back to Texas for more CTs and PETs. Lesions did not grow. Found a mass/thickening in my small intestine with minimal lymph node involvement. Still no diagnosis.
-September 2014: Back to Texas for more CTs and PETs. Scan results non-diagnostic but radiologists suspect lymphoma. Bone lesions grew, multiplied. In my hips alone, my bone lesions increased from only being 3 lesions, to being 8 lesions. Mass in small intestine grew, lymph node involvement increased. Lymph node biopsy. Result: non-diagnostic.
November 2014: I had another bone lesion needle biopsy planned and then an open biopsy in Texas, but we ended up cancelling them because it would have cost us $1600 round trip for both Brian and I to go and the no-diagnosis track record didn’t look promising. Plus, I don’t even want to think about how much money we’d already sunk into trying to get diagnosed there… So we decided to seek other, less expensive avenues and find someone here in Indiana who could do the biopsies and get me a first diagnosis/opinion, then maybe we could think about going back to MDAnderson for a second opinion.
Oh, also, my hemoglobin is around mid-11. Normally for me it’s 13-14. Hemoglobin is the stuff in your blood that carries oxygen and iron… so I get winded much more easily than usual, and it explains my pale-ness and why I just want to sleeeeeeeeep all the time. Example: the other day I took a five-hour nap. I woke up, ate dinner, and an hour and a half later went back to sleep for another ten hours… This drop in hemoglobin, unfortunately, often tends to be a pre-cursor for cancer in my experience.
So now you are all a little bit more up to speed on my situation at the moment. But wait, it gets better!
When I cancelled my MDAnderson appointments and biopsies, I turned to my oncologist here at IU to help me by calling MDAnderson and figuring out the tests they were going to do and then setting them up for here. I guess that was a bad idea? Because the next time I went in for an appointment with him, it didn’t go well and I pretty much got scolded and lectured and told that I “needed to commit to either IU or MDAnderson” because he “couldn’t practice this way” EVEN THOUGH going into this I asked him if he was ok with working with MDAnderson. So you can imagine my incredible frustration while sitting there getting lectured and having everything turned on me, like I’m some kind of bad patient who frustrates doctors and can’t make up her mind which hospital to be treated at. (The lecture was much longer and in depth than this… I’m giving you the condensed version. I still think this doctor is a good man, but I will definitely not be working with him again.)
**sigh**
So now I’m here, doctor-less, trying to find a new doctor who will take me on. Being told at every turn that I’m a “complicated case” and “you need to get a diagnosis before we can help you” or “I’m a sarcoma doctor, you’ll need to see a GI doctor for that” and then “I’m a GI doctor, you’ll need to see a transplant doctor for that”… and many, many more things that just keep me stuck. Why don’t doctors in Indiana work together? Seriously. Have egos gotten so big that we can’t work together? And in the meantime, patients are not getting answers and whatever is going on in their body is doing damage… If this IS cancer, letting it grow probably isn’t the best option. But if this isn’t cancer, best guess is that it would be GVHD (graft v host disease—where my body is attacking my transplant and trying to reject it) which isn’t a great option either.
The doctor that we met with today at Community South did not impress my mom or I at all. He came in with his mind seemingly already made up. I had brought along my reports and CDs of scans from MDAnderson. He didn’t even look at them! He decided he needed his own scans to determine if anything was growing. Even though we had 6 months of proof right in front of him that it was. And before he had come in, I had given the nurse a laundry list of my symptoms that have been getting worse. Granted, slowly. But getting worse nonetheless. You know what he said? “Well your symptoms don’t seem to be getting worse…” ….uh…. I’m sorry, what? First, this was his first time ever seeing me, so what did he have to compare it to? Second, I feel like if he had even GLANCED at my list of symptoms he would never have said that. Not impressed. Not impressed at all. But I seem to be glutton for punishment, or I’m just incredibly desperate for a diagnosis, because I’m giving him another chance. I’m going through with the scans he has ordered (mostly because I do want to see the progress on my worrisome spots) and meeting with him one more time next week.
I do want to end this post on a good note though because I really, really don’t like feeling so frustrated and stressed out.
My mama bear went into fight mode and got lots of people on the phone and gave some a piece of her mind and hopefully kicked them into gear, then documented everything and is going to be the squeaky wheel for me. She also had a brilliant idea to call some of her good friends she’s made along this long, hard, cancer-filled journey. One of her friends lives in Cincinnati and is a nurse. She gave us some really awesome and hopeful news: Cincinnati Children’s Hospital had a unit within their pediatrics unit that sees adult patients like me! Those who were diagnosed with cancer as a pediatric and cancer has followed them all the way to adulthood. I cannot tell you how hopeful I am that they will take me under their wing. The thought of being treated like a pediatric just makes me want to cry happy tears of relief. I really, REALLY hope and pray that it will work out, though I do know that however it does end up working out, will be exactly how God intended it to, no matter how hard it may seem. He knows the trials I am required to go through to be molded and tailored into who I need to be and who He needs me to be.
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