The biggest challenge

By nature, I am a very optimistic individual.  I tend to seek the positive in all things.  There are so many things in my life that I am grateful for that I often get frustrated that my medical issues are holding me back.  Frustrated and discouraged but these feelings are short-lived.  The overall feeling of “living in limbo” is the most challenging to me.  I can’t fix what is wrong.  I don’t know when this will end and when I can return to a normal life.  I don’t know how long I will be “waiting” for a solution.

Mentally, I am the same person I was “before” except I am not.  The last 14 months have changed me.  I used to take my health for granted.  I liked working and have struggled to understand who I am now that I am not defined by my career.  I started working when I was 14 and now, at age 49, I realize that work has always been part of my identity.  Who am I now?

I put my faith in my education and have two masters and a doctorate degree to my name.  But what value are they to me today?  I am not able to utilize the education that I so proudly sought.

I am on SSDI, it chafes me that I am struggling so much financially, my hands are tied, and I can’t do anything to fix the current situation.  For the first time in my life, I feel restricted.  I am used to action – if something is wrong, fix it.  If I need more income, get a second job.  Persevere, work harder, think logically, put in more effort —- but DO SOMETHING.  Now, it seems, there is nothing that I can do.  Within my power, I have utilized several mental health tactics to improve my coping skills but the problem is not mental, it is physical.  I no longer blame myself for what I cannot change.  This is HUGE for me.

I remain optimistic that I will find someday find myself teaching again.  I will be working again, eating again, drinking again.  I hold on to these beliefs because I am not a quitter and I refuse to give up.  I will overcome this.  (okay, so I see that I am not quite at the place of giving up the idea of totally being in control…but for a control freak…I’ve come a long way baby!)

In the meantime, I have had to come to the realization that I need some financial help.  My medical expenses are over $800 a month.  I have two children at home to provide for on a very limited budget.  I continue to try to sell off my professional books, make scarves to sell but I know that this is not enough.  I have applied for Medicaid and am now exploring various fundraising options.

I may be down, but I refuse to be out.  I have also decided that I can no longer hide behind my pride.  I have discovered that one of the hardest personal challenges I have had to overcome is my pride.  I dislike the idea that I need help.  I hate the fact that I am in a position where I must ask for help.  However, I no longer measure my value as a person against my need for assistance.  I am not the same person I was 14 months ago – I am kinder and less judging of myself.  I am willing to honest without fear of being seen as less worthy as an individual.  I accept there are aspects of my life that I cannot control and that does not mean I have failed.  Whew…it is still a little uncomfortable to actually put these thoughts down on “pen and paper” so to speak.

So, dear reader, if you have any financial ideas please share them.  Even if I can’t utilize them perhaps someone else reading this blog might be able to.  If you have the ability to help financially (myself or someone in a similar situation), please consider this option.  I know I am not the only individual who is struggling financial.  Medical issues such as cancer can have profound effects on individuals and their families.  Even if the cancer is addressed, there can be a major long-term impact still unresolved.

I don’t know where I will be a year from now but I know I will get there.  I don’t know what the journey will be like, but I will make it.  What I do know is that I am never alone and that I am surrounded by friends and acquaintances that care about me and my children.  I know that when I need help, I simply need to ask and help will come even if simply the encouraging word or a smile.  I am grateful for this knowledge and grateful for my friends.  I do realize how fortunate I am and, 14-months ago, I had no idea.

If you actually read this blog all the way through its rambling, I thank you.  Reward yourself with a slice of cheesecake or a scoop of ice cream (I don’t think I will ever stop craving cheesecake and ice cream).

The rise and fall of “The Specialist”

On 2/22 (my birthday), I had an appointment with the surgeon who specializes in esophageal issues.  The purpose of the visit was to conduct an esophageal motility study (manometry).  I have had a previous procedure that indicated that there could be spasms however the test was considered inconclusive due to the difficulty I had with vomiting.

To be honest, I went in with high hopes.  I expected that this procedure would reveal spasms and that the specialist would declare that he had a fix.  I was confident that the end to my problems would be soon a reality.  I was willing to endure the discomfort of the procedure knowing that the end result would be success.  Sadly, my dreams were not to be.

The doc threaded the tube into my nose and down my throat…gag, gag, gag.  Then, as I am lying on the exam table, he tracks the feedback on the machine.  After several moments, he instructs the nurse to pour some water into my throat, which I then swallow.  As always happens with liquids, I immediately vomit the liquid.

To my shock and dismay, the doc abruptly announces that the procedure is over.  He had just finished explaining that I would have 10 swallows of liquid and then about 10 swallows of a gel.  “It’s over”, after one swallow was not at all what I was expecting.  He removed the tube.  I asked him to explain.  He said, “The procedure is over, it is not an esophageal spasm, I will send a note to your doctor.”  I asked him what else it could be and he simply repeated that he was done with the procedure.  Then he left the room and I was left with the resident and the nurse.  When I asked them, they simply shrugged.

I made it to the car before breaking down and sobbing.  I was angry and confused.  I realize now that like most surgeons, this doc lacked some basic bedside skills.  He was focused on performing a procedure and that was all he was focused on.  I have found that most surgeons have a very narrow view of patients and they don’t seem to function well outside of that narrow arena.

I’ve left two messages with my GI doc and am awaiting a call from him to propose the next step – and to get a better sense of what the specialist had to say.

While initially discouraged by the procedure, some friends have pointed out the positive.  We know now it is not esophageal spasms so that can be ruled out.

In the meantime, I remain on TPN.  I do try to eat a bite or two throughout the day however I find that any more than a couple of bites and I will vomit.  The bites I am able to keep down often seem to sit uncomfortably for quite a while before this discomfort passes.  I am still unable to hold down any liquids.

I feel that I may need to seek additional medical resources beyond those at my current medical organization.  There are centers that are rated in the top 10 for GI issues that I may need to seek.  There is a reason why I am vomiting gastric juices that should be able to be resolved.  There must be a reason why I am not able to tolerate liquids.  Other people have similar surgery and are not affected.  I am not ready to accept that my problems are the result of vagus nerve damage (permanent).  I am not ready to accept that the next step is a j-tube.  I am not ready to settle for this as my new normal.

Return to hospital

After less than a week home from surgery, I was readmitted due to dehydration.  The vomiting was relentless.

Additional testing which reveals nothing new.

Six days later, they send me back home with a different medication to try for the nausea.

To describe me as discouraged would not be an understatement.

I do have a bit of hope – the new surgeon asked for a consult with a surgeon who specializes in esophageal spasms.  I met him briefly in the hospital and have an appointment with him in two weeks.

Why the previous surgeon never mentioned this individual is beyond me.  In fact, the fact that no one even thought of him as a potential resource reveals a lack of communication or even knowledge of resources within this medical organization.  This doesn’t anger me as much as it disappoints me.   I want to believe that my doctors are invested in helping me get better, but I find that my “faith” in them has diminished considerably.

Surgery

On January 27^th, I went in for my second abdominal surgery.  This time it was to fix a partial blockage of the intestinal track, remove some scar tissue, and to resection a small part of the small bowel.

It was a little over a year ago when I had the first surgery to remove my entire stomach due to stomach cancer.

This year’s surgery only took a couple hours.  The surgical incision went over the previous incision scar (breastbone to naval).  I had a different surgeon than previously because of the questionable decisions about my health made by the previous surgeon.  The surgeon this time made a very small neat scar rather than the wide jagged one that the previous surgeon left.

The pain was almost the same as last year.  Recovery was almost the same as well.  On February 1^st, I was released home.

I cannot get any straight answers regarding whether or not the previous surgeon caused the kink (bowel obstruction) that had to be repaired.  I feel it is almost certain she did because I have experienced problems right after surgery that never improved over the course of a year.  I suppose I will never know and must accept this.  What has been revealed is that her peers definitely think that this problem should have been addressed a whole lot sooner and that there was evidence of a partial bowel obstruction as early as last March.

I am now assured that my plumbing is clear…unfortunately this has not meant that I have been relieved of the digestive problems that have been plaguing me for the past year.  I am still vomiting gastric juices daily, still feeling nauseous 24/7, still having major discomfort when eating even the smallest amounts of food, and still vomiting even the smallest amount of liquids.

I remain on TPN for my nutritional needs.