Tomorrow's Stories

"Today's worries are yesterday's fears and tomorrow's stories"

Every day that I attempt to write I try to find a quote that fit's the mood and topic and I think today's quote fits my mood the best. All of my "yesterday" fears are finally fading. I finally, truly, see the sun shining a little more brightly. Yesterday my mom and I took another trip back to the hospital to see her doctor for a post-op checkup. We were told that it was a successful procedure and he fully believes that my mom will not have any more major problems or pain. So now where do we go from here? Every day is still filled with a little worry. I find myself constantly looking at her, checking on her, and still worrying some. I have seen a huge improvement which has lifted so much stress off my shoulders. My mom not only has her appetite, but does not hesitate to eat. She's trying to eat a lot more, rarely doubles over in pain now, and just overall looks so much better already. At this point I'm just excited to what the next day brings and watching her become stronger and stronger. I can't wait to see what tomorrow will bring. I just look forward to having not just my mom, but my best friend back.

Recovery Can Be a Long Road

Trying to suppress or eradicate symptoms on the physical level can be extremely important, but there's more to healing than that; dealing with psychological, emotional and spiritual issues involved in treating sickness is equally important.
Marianne Williamson

A huge weight has been lifted off my shoulders just from having this surgery over and done with, but now we face the challenge of healing. Tuesday was a very very long day which began at 4am, arriving at the hospital at 5:15, surgery starting at 8:20, and lasting 3 hours. The hospital is very crowded so mom was stuck in the recovery room until they could find us a hospital room. Mom didn't have any complaints about her nurse but I did. I got annoyed that he wouldn't even let her speak to my dad and I wasn't allowed to stay back there long, but other people, with different nurses, got to stay longer. Mom had been fighting a migraine and spent the majority of yesterday asleep. This morning she was doing much better, went off the pain medicine, went for a few walks, including one very early one at 4am. Unfortunately this good feeling didn't last long. :/ I left to go back to the hotel to do laundry and grab some food. When I came back mom was feeling bad again. She was cold, but head was hot, her head was hurting again, and then she would get hot and want all the blankets off. I'm praying that tomorrow's test goes well so she can start having liquids to drink. We might get to go "home" by the end of the weekend, otherwise we are looking at Monday or later. I pray that the nurse gets here quick with more headache medicine. Hopefully I'll sleep a little tonight. I'm tired of being tired, but I want to make sure my mom is okay before I even attempt sleep tonight. There will be a lot of changes and adjustments to make in the upcoming months. We may have a new normal. My mom will also have to adjust to the change of looking and perhaps even feeling different. For me, as long as she is happy, healthy, and pain free, that's all that I ask for.

Have Courage When Looking Fear in the Face

 "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'- Eleanor Roosevelt

Every day for the past year has been an experience, a struggle, and a test of strength. Tomorrow is my mom's surgery and everyone is anxious. Once again we are facing the unknown. Every surgery, patient, and outcome are different so we really don't know how my mom will do or feel after this procedure. From what we have read and been told it seems to be a difficult recovery, but that's expected when organs are cut, re-routed, and sewn back together. I've been trying to keep my mom's thoughts positive and sometimes it seems so difficult when other people start sticking their nose where they don't belong. Everyone is nervous and afraid of the unknown. I know we can get through this, I know my mom will be okay and most importantly, I know that this will help her feel a lot better. Saying a prayer for my mom.

Lost Mail Arrives

“Strange as it may seem, I still hope for the best, even though the best, like an interesting piece of mail, so rarely arrives, and even when it does it can be lost so easily.” -Lemony Snicket, The Beatrice Letters

I'm still in shock from the news I received today. It's like those stories you hear about where a letter has been lost for years, but randomly, unexpectedly arrives. I had hope that we would find a doctor that would not only confirm my mom's diagnosis, but would also be willing to treat her. As the months have worn on that hope has gotten smaller and the desperation has grown. I've watched my mom lose more and more weight and had a harder time keeping food down. We've gotten our hopes up each time we've found another doctor only to hit a dead end so that's why today feels unreal. I keep thinking that I'm going to wake up and this will be a horrible cruel dream, but it's not, it's real...our lost mail has finally arrived. Early this morning my mom went in for more of the same tests just at a different hospital. I emotionally shut down once I received her text stating that the resident thought it was just reflux and compression of her duodenum yet nothing more. I didn't want to respond, how do you respond when you have continued to feel so let down. I guess I was just trying to pretend that things were okay and we hadn't hit another dead end. Thankfully I did respond to my mom which resulted in some wonderful news. The doctor at Johns Hopkins is certain my mom has SMAS and wants to do surgery on her asap. Now my mom must decide to risk a surgery, where several SMAS patients have ended up with complications or attempt a feeding tube. No one can make this decision for her, but I'm thrilled that we found someone finally willing to take action and help her.

Enduring the Darkness

“I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars.” ~ Og Mandino

Close your eyes, say a prayer, hold your breath, and wish for the best. It's taken me awhile to update because of the stress, disappointment, holidays, and wedding, but now it's time to attempt to put my thoughts into words. My mom's last trip to Florida did not end well. After a round of tests the doctor said everything was normal. Thankfully my mother was persistent and the 3rd year resident told the doctor she was pointing to her SMA. The doctor wanted to immediately admit her to the hospital, but my mom was flying back the next day and we had to finish getting everything ready for Thanksgiving and the wedding. Good news is Johns Hopkins agreed to take her case, scheduled her for an appointment, and she sees that doctor on Wednesday. I'm afraid to let her go on her own because she has been feeling worse, throwing up more, and becoming exhausted much easier. I don't want her to travel alone, but like myself, she is very stubborn and trying to prove to herself and everyone else that she's okay. On December 3, she gets a feeding  tube put in. I might have to fly out to Florida and drive her back home. 

 I was really worried about her last week between family, Thanksgiving, and the wedding my mom was feeling very weak. I don't think her nausea has ever been this bad. Plus, her migraines are becoming worse and lasting longer. One of the hardest things to handle was my dad's family being over and trying to get along after them not being part of our lives for ten years. There's more that I wish I could write, but everything is still too jumbled up.

The Day We've Been Waiting For

“We dream to give ourselves hope. To stop dreaming - well, that’s like saying you can never change your fate.” ― Amy Tan, The Hundred Secret Senses

I waited to post until today because this has been the day so many of us have waited for, the day my mom sees a doctor that has diagnosed and successfully treated a patient with SMA. It seems like all of our hope and answers were relying on this doctor and his diagnosis. Unfortunately I was not able to be with my mom for this appointment and at this second I am still a little in the dark and do not have all of the answers. I may never have the whole story of what happened in that office. My friends knew how stressed I've been all day and that I've been anxiously awaiting news. I had such high hopes...at this moment it feels like we will never have any answers. The doctor in Tampa stated he did not believe my mom had SMA Syndrome. I guess there wasn't enough evidence to support our previous diagnosis. What I want to know is why her SMA is at a 10 degree angle, shouldn't that be causing some of her pain, that supports the SMA Syndrome diagnosis, but because some symptoms were not present he has decided to rule it out. He wants to run more tests on her, but those wont be done until Nov 5 which means more time waiting, more time stressing, more weight that will be lost, more depression, and maybe even the desire to give up. This doctor thinks it might have something to do with the pancreas, but didn't explain further what the problem might be or why it is causing all this pain. 

I feel hopeless and upset that there is nothing I can do to help out my mom. At this point part of me wants to stop dreaming. My family is having such a hard time and this is just another blow to us after news of my mom's cousin. My mom is sick and no one can figure out what is wrong while my Aunt was given only a 15% chance of beating her cancers. How can you find hope when doctors are not providing answers or solutions?

The Emotional Roller Coaster

"Don't waste a minute not being happy. If one window closes, run to the next window-or break down a door." -Brooke Shields 

  It seems like we had looked for everything imaginable and seen so many specialists, but slowly started to face the reality that we may not ever find out what was causing my mom all her pain. She started telling my dad, "they'll find out what's wrong with me when they do the autopsy." My response was that we'll just put her under and do an exploratory surgery. From May until August the doctor visits had stalled, but the family continued to do their own research to see if there was anything we could find.Then one day we got a call out of the blue from my grandmother. An ultra sound tech, who works for my grandmother's doctor's office, came up with a diagnosis. The woman told us she thought my mom might has SMA Syndrome, better known as Superior Mesenteric Artery Syndrome. SMA is very rare and there only about 500 documented cases, but unfortunately many doctors do not believe this is a real syndrome which is an issue we ran into at the Mayo Clinic. Despite Mayo ordering more testing, "Approximately 0.013-0.78% of barium upper GI studies evaluating for superior mesenteric artery syndrome support the diagnosis." (http://emedicine.medscape.com/article/932220-overview) SMA Syndrome can be caused by a trauma incident or caused over time by someone that's always been very thin. Learning that a bad accident could initially trigger this caught my attention. Remember, in January 2011, my mom was in that bad car accident and then lost weight. The fat pads hold up the mesenteric artery keeping it at a minimum 50 degree angle. When weight is lost, there is trauma, or compression on that artery, it pushes on the duodenum which then pushes against the spine causing pain. All the pieces began to fit, but my mom remained skeptical. Thankfully we were soon headed back to Florida and had an appointment with "Dr. Death."

Sept 21, 2012
I went with my mom to meet "Dr. Death." That man drove me nuts. He didn't seem to know my mom's history despite her seeing him for almost a year. He asked her several times if she drank or smoked, asked what medicine she was taking, and even with us trying to show him the article on SMA Syndrome he basically brushed us off. In the meantime the ultra sound tech had been in contact with "Dr. Death's" assistant and together they figured out what test my mom would need to maybe show the SMA. I'm still not sure what made "Dr. Death" decided to do this test. Maybe it's because there were 3 women sitting in the office in tears because no progress was being made. Either way I'm thankful that this new CT scan was ordered. That following Monday my mom went in to get her CT scan done. I know my stress level was through the roof and I can't imagine how my mom was feeling. By Monday afternoon we received her results. The radiologist determined that nothing was wrong with her. I was still a little hopeful because I had read that most people didn't know what SMA was or how to recognize it in tests. My grandmother's office called him back that same day and asked him to specifically look for SMA Syndrome. We needed the results back asap because we were going back to "Dr. Death" the very next day.

Sept 25, 2012
My mom, grandmother and I were headed back to see "Dr. Death." We still didn't have an updated report from the radiologist and things were once again looking like we had hit another dead end. About halfway to the doctor's office we received a call from my grandmother's office and when I heard her on the phone I knew...the radiologist had changed his report. After re-examination the radiologist determined that my mom did have SMA Syndrome. Not many can understand that feeling you get after finding out what's been causing your mom so much pain. Unfortunately the next hurdle was dealing with "Dr. Death." Even with the revised report in his hands, "Dr. Death" continued to ask my mom if she drank or smoked, but this time asked if she was anorexic or bulimic. Are you freaking kidding me??? He caught my grandmother giving me a look, but we were beyond caring what he thought at that point. While we were in his office he was on google looking up what SMA Syndrome was and what to do to treat it. He thankfully decided to refer us to see someone at Shands and said he'd be willing to put in a feeding tube if my mom wanted. Meanwhile my mom was researching her own doctors. There was a doctor at Mayo that we wanted to see, but ended up with a vascular surgeon. He was the one that has upset me the most. He made me feel like he didn't care that my mom was in pain or that she had this diagnosis. He was the one that said many doctors do not even believe this is a syndrome. He ordered more tests which annoyed me because I wanted something done. As I quoted earlier the barium tests will rarely show SMA, which is what happened in this case. I felt like more time had been wasted by another doctor that didn't seem to care. 

In the meantime I'm trying to stay positive for my mom and just trying to help her in any way that I can. It's difficult to see her struggling and not eating. I'm always trying to watch her and make sure she's okay. I rush her through stores because I know being on her feet too long will trigger the pain. I fall apart when I see her not eating or knowing she cant keep her food down. 

At this point I'm looking forward to Oct 15th. My mom is headed back to Florida to see a doctor in Tampa that has diagnosed and successfully treated someone with SMA Syndrome. I pray that he has the answers we are so desperately needing and hoping for. No more closed doors or windows for us we need a resolution with positive results.