Beyond Frustrated - Echo...Echo...

Evening everyone!  Before we jump into what's going to be an incredibly long blog post (don't say I didn't warn you), I just wanted to get some misc things out of the way that I keep forgetting to mention with all of this dreary, frustrating doctor drama going on. If you guys haven't noticed, I have remodeled my blog to make it a little more easy to read and it seems to display better across all browsers like Chrome and Firefox. In addition to my blog posts on the main page, there are new pages at the top with more information geared toward my personal medical history, appointments, tests etc. This is mostly created with my close family and friends in mind so they can see when my next doc appointments are or the results of my latest blood tests (which I just posted yesterday from 4/15/13) but it is also done with the hope that maybe it will shed light into someone else's journey or give the opportunity for the rare chance that someone may come across my case and provide some much needed insight.

Ok, let's jump right in. Like I mentioned over in my group on FaceBook, I've been going to several doctor appointments but not really posting the outcome, thinking well, I've got a doc appointment again in two days, I'll just wait for that one and then I'll hit two birds with one stone - and then I'd get discouraged or overwhelmed  and not know where to start to explain what happened. Well, I did my best today to gather my thoughts and still my video ended up filling a whole 4GB card and being chopped into 3 20 min pieces. I do have a video that I plan on posting with this blog however at 10:00pm tonight, it's still loading into the video editor so it will have to wait until tomorrow. Besides, I have had some feedback that some of you like text with the video in case you're not in a good place to watch but still want to know the cliffnotes version. This time, I obviously would not call this the cliffnotes version but going forward, I will try and do a little more than bullet points to accompany the video's. This blog, I just feel like spelling it all out, getting it all on paper, it will help me organize my thoughts and hopefully help you help me! I need feedback, opinions, direction...something...because my doctors and the whole situation is driving me desperate.

I have been in touch with some of you regarding appointments so I think the best way to do this is to split it up into appointment paragraphs. That way if we've already talked about my spinal surgeon, you can skip down to the next appointment and see what happened there. Just to play catch up very quickly in case this is your first time reading this whole drama, my cancer caused three tumors in my spine; one at the very top of my neck that they call T1 (I think), another at L1 and another at L3. T1 was a very small almost newly developing tumor not yet pressing on the spinal cord, L1 was a medium size tumor almost pressing on the cord, and L3 is a tumor that has crushed the vertebra into three pieces and those pieces have compressed the cord and is causing nerve damage, weakness, numbness and pain to the point that I can't walk without the use of a walker for short distances like walking around the house or a scooter for things like getting to the   store or going out in public. I can't drive, I have to elevate my feet and sleep on my back at night because the swelling at the end of the day is so much and so painful, you wouldn't recognize my feet as feet, I'm on a steroid that is causing my whole body to swell and my face to look like a chipmunk. I surely can't work being the mobility is what it is, so here I sit at home trying to make sense of it all. I am only 30! This can't be the quality of life to look forward to permanently?! Ah I'm getting off track. I started to notice weakness and pain in walking in late December/early January. It started out a few times a day needing to use a wall or a chair to steady balance, then it was needing to use a wall just to walk - Now here's where it gets a little fuzzy, I'm not sure if I spoke with my oncologist and he sent me to my spinal surgeon who then sent me to radiation or if I was sent straight to radiation from my oncologist but in any case I mentioned my ongoing weakness and ended up in radiation treatment, 5 treatments of heavy radiation over 5 days. I waited a few weeks and instead of getting better, the mobility got worse. I would work a few hours part time, barely make it to the car using the walls and things around work, and spend the rest of the night in the hot tub bc it was the only thing easing the pain. Three weeks later, in my oncologists office I mentioned the weakness was worse and he sent me straight over to Valley Hospital saying the worsening weakness was an emergency and I needed surgery ASAP - why didn't I mention this weeks ago etc that the radiation made it worse. At the hospital my spine surgeon was unable to see me, out of town with a family emergency, and his colleagues sent over to assess the many MRI's and tests taken of my spine freaked out about how much cancer was in my bones (which is nothing new by the way, those close to my case know all about the cancer in my bones) decided I wasn't a candidate for surgery and that to take it a step even further, my prognosis was that I had about 3 months to live looking at the test results and statistics. Instead of rushing me into surgery, they were going to keep me overnight, bring hospice in to speak with me and break the bad news that I can't be operated on AND I need to get my affairs in order. I was sent home the next day with a walker, a wheelchair, and the thought that I will never walk again normally which was ok because I won't make it to the summer anyway. Fast forward a few days when I snapped out of my daze and realized no one can put an expiration date on my life, this is not the way it's going to be, I made an appointment with my spinal surgeon now that he was back in town from his emergency and demanded he look at all the tests and see if he would do surgery having an opportunity to look over the tests himself. Here's where the appointments start.

First Appointment with Spinal Surgeon - 
The doctor took a few minutes to go over the MRI's and reports from the hospital and then looked at my family, then at me and said does she know? Does she not understand? Why is she so concerned with surgery or her mobility? Candice, there's something you need to know. Your body has cancer from head to toe. It's in every organ, every bone in your body. It doesn't look good at all and I think you should be far more concerned with filling your remaining days with the things and people that you love, not trying to fix your spine. You are absolutely not a candidate for surgery. For starters, the bones above and below the compression's are so riddled with cancer and are so weak, they would not hold the screws and hard ware required to fix the problem. For another, with your short life span you'd spend the rest of your life recovering with body braces and bed rest - and that's even if you made it through the surgery. The doc went on to say that he thought I would never make it off the table, my body wasn't healthy enough to survive a breathing tube, anesthesia, my lungs would collapse, and there would be a good possibility that even if he pulled the bones off the spinal cord, there's no guarantee feeling and strength would come back and make me normal again. He continued to say that my bones will continue to deteriorate over time and that I needed to be expecting more compression to develop, that eventually each vertebra is going to break apart as the cancer got worse and I'm going to get worse, not better. It's almost as if he had it in his head that my cancer doctor had no treatment either and that I was going to just sit home and wait for it to play out it's course. The whole appointment confused me. For one, when did my cancer get this worse that it was head to toe and I was dying so quickly? My cancer doctor never mentioned this to me in the hospital. He said that he thought he might see a few spots on my liver that were small and nothing to worry about yet and while I understand my bones being weak and not being able to hold the hardware to fix the compression, why am I not healthy enough to survive a surgery? Besides the cancer, why can't I be on a breathing tube or put under?? Almost crying and screaming I basically said this is not the end of this, there has to be something, anything that can be done. I won't take no for an answer and I won't take the answer is that I will live on a walker and never go back to normal life. DO SOMETHING. I had read about procedures called Vertebroplasty and Kyphoplasty - basically they take a type of bone cement and they inject it into the compression which I took as a non invasive way to pull the bone off the cord and give me the relief and strength back that I had before the bones started pushing on my spinal cord. The doctor ended up giving me a referral to a group of doctors that specialized in this, and then ordered new MRI's of my back after realizing we hadn't really looked at an official test since the radiation treatments were done. He also put me on a drug called Neurontin that he said would help with nerve pain, made sure I had plenty of morphine to keep me comfortable, and although I complained about the swelling in my feet, face, appetite etc, insisted I stay on my steroid like it was the only thing keeping my compression from swelling out of control.

First Appointment with Cancer Doc -
A few days later, I had an appointment with my cancer doctor. This actually had not much to do with my mobility issue, it was my normal 3 week cancer checkup but I walked in with a walker and of course discussed with him my frustration. My goal of this appointment was to make sure that my cancer wasn't as bad as they were making it out to be and we were still planning on fighting, there was still meds to try etc. He assured me that yes, actually he wanted to put me back in full IV chemo because of the compression. Obviously my cancer was getting worse in my bones, not better since my bones were deteriorating and furthermore he wanted to stop my Arredia which was a drug that helped my body strengthen the soft spots the cancer leaves when it dies saying he's given me all the doses he can give. We talked briefly about my mobility and I asked him if he had heard about the cement procedures - he said he had and was agreeable to it even if I was in chemo because it was just a needle incision. He also asked me to stand, observed what mobility I had and said well, let's see what the chemo does, see if the cement procedure helps, and as for anything I can do, well Neurontin is a good drug for nerves and lets just see what happens. I got my first dose of my new chemo called Abraxane that day and went home with pretty much no solution from my oncologist.

Cement Consultation - 
This took two weeks to get which is already frustrating. Now I've gone almost a month and a half without mobility, in fact my strength has seemed to get even worse and I can't tell if it's the chemo messing with my strength or making the compression worse or if my bones are getting worse like my spinal surgeon predicted.  Anyway, I finally get to meet this doctor and he starts off by saying I'm not a candidate for the procedure. He's very very very reluctant. He said he's leaving a small door open, he'll do the procedure because he knows I wouldn't be coming to him if it wasn't my very last end of my rope but he really really doesn't want to do it unless I've exhausted every single option and I'm ready to take the risk knowing there is a big chance it could alter my quality of life even worse than what I'm going through right now. Basically, he is so concerned that the cement, instead of correcting the compression, would actually push the fragments more into my spinal cord and actually cause paralysis. He's not cutting me open, or physically touching the bone so the control of the cement isn't guaranteed, instead of fusing the fracture, there's a good chance that the cement might just make everything worse. He kept saying this is not what the procedure is for, its not to correct a compression, it's for fixing pain and I misunderstood the practice of cement. Apparently the cement is injected at a high temp and that high temp will kill the tissue nerves (not the spinal cord nerves) so you can't feel pain in that area  anymore while at the same time fusing the fractured bones and strengthening the area but usually the area is not completely in pieces leaving the cord exposed, its just a crack in the bone that can be filled with cement. Like he said, he is open to do it if its a last result but he made it very clear that if he performed the surgery it would be the first time he would be doing it for the reason of trying to repair a compression and gain strength back. He will not admit that the weakness will go away but then says to check out some of the other patient  stories and literature where they do say they got their strength back - he just can't say that's what will happen because that's not what the procedure is made for - he usually will absolutely not touch the fracture when it has gotten so bad it is touching the cord and causing neurological damage.  We left it that I would go back to each doctor, the spine surgeon, the radiologist and my cancer doctor and triple check there was absolutely nothing none of them would or could do to fix the compression. If and when that was the case, THEN I needed to research the studies on the procedure again, really consider my quality of life and then come back to him and he will possibly consider the procedure only after he consults with his colleagues as well. This left me crushed. I wanted this to be the miracle I was looking for and instead seems more like a definite way to paralyze myself - but if there is any chance - ANY CHANCE that it could work? It could take the bone off the cord, open up the canal and have my nerves give strength back to my legs?? I might take that risk. To walk again???

2nd Appointment with the Spinal Surgeon
The following Monday, I had an appointment to go over the MRI's the doctor ordered and to talk to him about the cement. This was actually a pretty positive appointment compared to the rest but it wasn't productive. After looking at the MRI's, he got a funny look on his face and said well, I am completely surprised. The spot at the top of your neck that we were worried about compressing and causing problems with breathing and other major issues, well it is completely stable. I don't see a tumor there anymore and it looks great. I think the radiation did wonders here. Great! Then he looked at L1 and said that that area, while he still saw some tumor material there, it was considerably less and thought that looked considerably better with radiation as well. On to L3, the place causing all the problems, the three bones pressing, he didn't see much of a change and in fact thought the compression had actually gotten a little worse. Well, two out of three isn't bad and to surprise this doctor has actually been a challenge so I was starting to see a little ray of hope. I told him about meeting with the cement people and he went into (again) how he didn't think it was safe, it wouldn't fix what was wrong, I'll never get my mobility back and (again) he would not, would not, again, would not operate on me. Absolutely not. I heard the lecture again about how I would die on the table etc. Damn. I was hoping that with MRI's being positive he would see I'm still fighting, my bones are getting better, there has to be SOMETHING! I CANT LIVE LIKE THIS!! I started to almost cry and explained that the swelling in my feet and legs were just unbearable by the end of the day, that it took all my strength in my day to walk from the house to the car to his office and back again with the walker. I tried to paint my daily picture so he would see how horrible this compression is making my quality of life. At this point I was even getting cloudy brain function and feeling numbness in my fingers and hands from what I thought was the dose of Neurontin that the docs had me on. I would sit at the computer and try to type and email or read an article and just stare at the screen for ten minutes and not realize it. He basically changed the subject. He believes the steroid, while causing the swelling and other side effects is necessary but he did say I could taper off the Neurontin if I really wanted to. The doc looked at my family and started in again about how they need to convince me that I need to stop worrying about walking and start living life. Then he asked me what I was passionate about, where I've always wanted to travel, what I've always wanted to do with my life. I should go around the world and see everything/a road trip and see everyone. My mom looked at him like he was a little crazy and said, well of course, we would send her anywhere, we'd love for her to just spend her time living like that but she can't WALK and we can't make our current bills since she's not working. The doc just kinda nodded his head and said well, the only thing I can think of to do is to go to your radiation doctor and see if there's any more radiation he can give you. The radiation has done such good things, he needs to see these MRI's too and maybe that will give you more relief. I'm not going to make you come in for another appointment (which I took as stop coming in there's nothing I can do) so call me in a month and let me know how you're doing. UGH!

2nd Appointment with Cancer Doc - 
The following Wed I had my normal chemo/checkup. My numbers pretty much stayed the same which I was disappointed by my doctor saw it as keeping my cancer stable so we did another treatment of the Abraxane. I'm hoping it's just the type of chemo that takes a little to build up in your system before it starts to bring the numbers way down. I started into my mobility issues with him, having walked into his office with a walker still. He had me do a number of things, stand up, flex my feet, walk across the room, etc. to assess the situation and after looking over the MRI himself he said he was very surprised how much it was improved and said even though they didn't see an improvement at L3, he thought my mobility was a little better. The doctor was concerned about the swelling and said that he disagreed with the spinal surgeon and that the steroid was doing way more harm than good and I needed to taper off of it, or at least cut it in half. I also told him I was tapering off my Neurontin because of the numbness in my hands and the cloudiness in my thought. He definitely stopped me there and said that was not a good idea and that he thought the Neurontin was going to be the key to my compression being repaired. What? When was he going to mention this? He went into how the drug is known to help with nerve pain but taken for a long time, about 6-8 months, it can actually repair, protect and reroute nerves! He also went into a story about how he had a patient like me who could barely walk but after months of Neurontin, he started to get his strength back and now he's walking! The doc couldn't really explain why, but he said nerves will do that sometimes, they'll find a way to do their job. His answer to my problem was to see what the chemo does, up my Neurontin to 3 pills a day and taper off my steroid. Well, that story is wonderful, gives me hope of course, but you want me to just wait 6-8 months at home and see what happens with chemo and the medication? What if waiting that long permanently damages the nerves and when the spinal canal finally opens up, nothing happens because there's no nerves left?? He didn't have any answers for that but then out of nowhere says, well I think another thing you could do is go back to your radiologist doc and see if there's any more radiation they can give you. That might help if we get even more tumor material off the nerves and compression. Why do I now feel like no doctor knows what to tell me so they're passing me off on eachother!! They feel sorry for me, but they can't fix me.

Radiation Appointment
This appointment leads us up to just this past Wednesday. I met with my radiation doctor to go over my MRI's and as suggested by all the other doctors to then to make sure there was no other treatment he could offer. I won't lie, this doctor is more than a little strange on occasion. He is one of those doctors that is super smart and knows his stuff but he goes off on strange tangents in the middle of explaining something or has such a dry sense of humor that you can't tell if he was joking or being serious. He spent an hour with me and my Momo going over my case, my MRI reports, asking questions about what the other doctors had to say, looking at my swelling, my strength, where my weakness was etc. He basically said that according to the MRI reports, there was less than 10% tumor material left at L3 and almost none left at L1 and none left at the top of my neck, all being healed by the previous round of radiation and therefore there wasn't a reason for any more radiation. If he radiated, he would hit the spinal cord because there wasn't enough tumor material to treat. The answer the other doctors were looking for? No, radiation is not a possibility. He even seemed annoyed by this question and even said, look tell them I did my job! I did exactly what they asked, I killed the tumors and even faster than normal. Usually looking at an MRI only months after treatment show nothing, it usually takes 6-12 months to see any change on a test, so to see this kind of progress so soon is fantastic. This on one hand is great news, but also means that there's nothing he can do either. So is there anything he recommends? Anything he can do?? He's the last doctor! After talking a lot about tests he could needlessly run he said he thought the best way to attack the situation was by power of deduction. It was obvious that the problem was not being caused completely by the tumors because the tumors were pretty much gone and there is no improvement in my walking. The question is if it's plainly a nerve issue. To see this, he recommended coming completely off the steroid. He agreed with my cancer doctor that this was causing the swelling and even chalked it up to causing a lot of the weakness even. He said that I should taper off the steroid and see what happens. If some strength comes back, the swelling goes away, and I see some improvement, then it's a nerve issue and I need to stay off the steroid and give the nerves the much needed time to heal and grow back. If I continue to get worse, lose even more mobility or the swelling doesn't go away, then I need to go back on it and it isn't a nerve problem, it's a mechanical problem. What's a mechanical problem you ask? Well he says that basically means that it's a spinal surgeon problem. That means it's a bone problem and someone needs to go in surgically and take the bone off the cord. The doctor then went into how he doesn't agree with the spine surgeon, that he thinks I could handle a surgery and he doesn't see what he's talking about me not making it off the table. He claims that the actual surgery is not the problem, that the spinal surgeon does thousands like this every day, the problem the surgeon is worried about is the after care and the recovery. That's where he claimed that my spinal surgeon was being lazy (but without really coming out and saying those words) and that I needed to go back to the surgeon and tell him I  would be willing to take the risk and go through surgery - and to have the surgeon call him because he'd support it. We left it that I would come off the steroid and go back and see him (radiation doc) for an appointment in a month.

Now what?!?!
So now what the hell do I do?? Now I hope you forgive me for not being completely out there with what's been going on - not because I don't want to share but more I don't know where to begin, continue or end the whole thing. I'm getting so much information or lack there of from every doctor involved in my case that I don't even know what to do or who to believe. They all have a different opinion not only on the state of my cancer but the cause of my lack of walking, what prescriptions I need to start and stop, and even where my life priorities should lie. I can't even seem to wrap my head around all of my options. I simply know what I deal with on a day to day basis. Daily tasks are small victories. Being able to step over a 2 inch shower door frame is a big deal, and an even bigger deal? Being able to stand up long enough (leaning on a walker) to finish a shower. I can't feel my legs from the knees down so I just guess when my feet hit the ground and go off of muscle memory. My muscles are atrophying. Being that, it's impossible to bend over because the    nerves aren't giving my muscles the signal to work to push myself back up. If I drop something on the ground? I have to find someone else to pick it up for me. If I were to take a step without the help of something to balance against, it's as if someone is standing behind you kicking the back of your knee every time you step. I'd just fall on my face. I already talked about how I have zero independence, I can't drive, and pretty much rely on someone else to do everything from pick groceries up at the store to doing my laundry and feeding my cats. This doesn't count if I do want to see the outside of my house. Then someone not only has to drive me, but be able to lift my handicap scooter in and out of the car and put it together - and then either stay with me or come back and get me like a child. I again have already gone into the fact that at the end of the day my feet and legs are so swollen and in pain I spend my evenings with my feet up and my back in pain, timing my pills just right so I can sleep at least halfway through the night. Ahh!! This is not the quality of life I can just lay down and say I can settle for!! What do I do? Do I wait and have faith for a miracle, hope that my body will repair itself if that's what is meant to be and just try and be extremely patient? Is that a death sentence for my nerves, waiting and hoping that my body will do it's thing on it's own? Do I go back to the cement guy and take all of his risks and warnings into consideration and decide it's worth the risk of being completely paralyzed for the chance of getting my life back? Should I seek a second opinion from a second surgeon and ask a completely new doctor to pull the bone off the compression? Lot's of crazy doctors out there that will do anything a patient asks for money though. Should I come off the steroid and then when that doesn't work, then seek surgery/cement? How about going with my cancer doctor and give it 8 months of this Neurontin to work its miracle while seeing what chemo does? Oh my gosh, how do I handle 8 months of just waiting and seeing, and waking up every day with this...and again what if waiting is the wrong thing and I've already lost nerve function and the waiting is just going to mean more nerves dying everyday so if/when the canal ever does open up the nerves are completely gone and any chance of getting strength back is gone with it?? There's just so many things my doctors can't answer and are arguing over. Every doctor at one time or another has said that there is always the possibility no matter what I do I might never get my strength back but that can't be the way it plays out. I just feel like I didn't have this problem until my spinal cord got compressed so it would make sense that if you fix that, you take the bones off the cord and open up the canal, the nerves that are still there will flow freely again and with a little physical therapy and time to heal, the damaged nerves will grow back and I will eventually walk normal. That just seems common sense to me but I realize it's complicated with weak bones and cancer and it's not like I don't believe that the bones above and below are too weak to hold hardware but is there no other less invasive solution or something invasive but strengthening the weak bones that can be done and ASAP before I lose everything? I feel such a sense of urgency if not to walk again ASAP but I feel so helpless day to day just waiting for something to magically happen when I could be doing something to help/prevent/stop it all. If I did surgery at least I'd be recovering from something. I don't even know if all these months of "bed rest" has hurt or helped anything. Am I missing an option?? I'm so overwhelmed. Speaking of, for those of you close to me that have gone to my doctor appointments or have listened to the recordings and I've missed an important fact or didn't remember a part of an appointment right etc. please feel free to comment. There's a lot to put down/remember correctly and I want this to be as accurate as possible.

WHAT WOULD YOU DO IF YOU WERE ME?? HELP!!!