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Overwhelmed: Be Your Own Advocate and Listen to Your Self

Please be sure to read the RR Dogs: Please Help Fill Our ‘Tank’ post at the end of this story.  Thank you!

I recently went to a major cancer center in the Houston area for a second time/consultation in light of new test results.  While even more tests are pending, as well as a re-read of the PET scan results, I thought that I would share with you what happened at the visit.  I have been traumatized for days and have decided that I will never go back to this place. Ever.

I was originally given Figure F (figures referred to are all in the main drawing above) as the only alternative to getting a large mass out of my abdomen.  It entailed totally opening my tummy up from sternum (breast bone) to pelvis and from hip to hip.  A lot of organs are taken out of your body and examined, the docs dissect and remove things and then put what’s left back in.  You are exposed to the possibility of major infection and complications including your organs being too swollen to close you back up on the first surgery.  I was not and am still not willing to do this.

Between visits one and two, I had done a ton of research and had seen four other doctors before this visit.  I also brought a list of questions to try to discern if I could trust this organization and doctor with my life.

While I could tell by the size of the mass that I would not be eligible for laparoscopic surgery, I began to see that I may be eligible for robotic surgery which, I thought, would present with less exposure to infection.  I asked.

“I am willing to try that…” the doctor said.  “But, if I run into any problems or if I can’t get the mass out in one piece, I will need to proceed with the original option (F)–in addition to all of the robotic incisions.”  I wasn’t comfortable with the word “try” or the lack of confidence.  I just knew I’d wake up after surgery regretting having been there.

The way things would proceed, if I started with robotic surgery, would be that I could choose Drawing A or B first–there would be five incisions going up and down just below my sternum–the middle one would be longer–PLUS one incision that went all the way from side to side.  I could choose if I wanted to start with the huge one to be above my belly button or down by my pelvis.  The doc would try to get the mass out of one of those incisions–or if need be, make both huge “across” incisions.

The alternative is that if it wouldn’t come out of my tummy, they would then split open my bottom end somehow (I couldn’t ask for any more details without fainting) and bring it out that way.  I would be cut apart all over on top and on the bottom.  I couldn’t even imagine what that recovery would be like!

If I didn’t want to do those options,  they could start with A or B but extend the middle incision of the robotic surgery from my sternum to my pelvis–whether I chose the above the belly button or across the pelvis incision.  And, if that didn’t work, after all of those incisions, they would resort to a complete open surgery–that was the first option–in addition to.  I kind of felt that they were looking at that as the only way so I’d wind up looking like a puzzle on my tummy.

I was getting clammy and faint so I moved over near a cool block wall and sat down. The docs don’t want to get into more detail lest the patients don’t proceed with surgery (yep) — losing hundreds of thousands of dollars in their fees and for the hospital and staff–but I had to know a few other things before I walked (or ran) out of there.

What do they do for pain management given what I knew I would feel like after all of that?  “Can you take Motrin?” the doctor asked. I almost got up and left right there.

I expressed that after all of the above, I am afraid of winding up on the show, “Botched,” especially after seeing all of the pieces of myself that would need to be put back together.  “Well, I’ll try my best but you can opt to have a plastic surgeon there to sew everything back together but I doubt that insurance would pay for that.”  The doc shrugged her shoulders.  I held back my bile.

I also have a serious HAI, (still–after nearly one year being hospitalized in the ICU for an emergency bleed and repair in my small intestine–and my recent blood work shows things are STILL getting worse by the week!).  “What do we do about the HAI?” I asked. “Well, I feel comfortable operating first and then when you can recover you can deal with finding an infectious disease specialist or whoever to help you.”  Last wrong answer I could tolerate–and I had more questions.  I–emphasis on I–am not comfortable with that approach unless this was a life or death decision–but no one asked what I was comfortable with. You must be your own best advocate!

Before I gathered my things, as I was being asked continuously to schedule surgery, dates being thrown at me as I was trying to leave, I asked if I was eligible for alternatives like cryotherapy (freezing the mass) or several other things that did not involve a “mess.”  Yes, I got the impression and some discussion, that I could take the chance if I wanted to–but of course, they didn’t do them there so they weren’t offered as options.  That was all I needed to hear.  That “yes” and the discussion that the mass is stable right now, gave me a sigh of relief and the freedom to explore more options and their willingness to schedule surgery in the late summer meant that I had time to figure things out.  They handed me a lab slip since I didn’t want to go to their lab–I just had to leave their premises before I had a nervous breakdown (whatever that is) and I left.

Moving Dog Food…Ouch!

I think because I still have the HAI infection from last year’s hospital emergency and the night before this visit to the hospital I had caused sciatica/hurt my back by moving a bunch of 50 pound bags of dog food (I do major projects like that when I have anxiety to keep busy), I was in a weakened state to deal with the cancer giant monsters.  My brain was operating at full capacity but my body was weak.

(Boy, do I need those little dog food bags for awhile again!  Anyone feeling inspired to help with this, Walmart.com has the best prices right now for 4-11 lb bags–I can send you links or an e-credit will help a lot.)

It was late in the afternoon, I was dehydrated, hungry and frazzled by the time I got to the next doctor for help with my back.  I apologized for babbling but I was just beside myself.  He was so kind and used obvious communication techniques that he must have learned in school or therapy to communicate with me, to calm down and to help me clearly tell him what had happened.  I am normally very steady and optimistic but that day, I had been rattled and I was upset.  He ordered medicine to help with the pain of my back (not Motrin!) and told me that I was lucky that the nerve issue didn’t go past the back of my knee which would have been a more serious back issue–and also told me lovingly to stop moving hundreds of pounds of dog food!! (He tells everyone about our animal rescue efforts like a proud uncle.)

When I left his office it was close to 5 PM. I took the lab slip over to the hospital with the chapel. I needed to take a little time to sit down and pray and to light candles for our angels and loved ones and all of our (yours and ours, on earth and in heaven) animals.  I regrouped and felt much better. The energy of the chapel is very soothing.

I got up and went to the chapel hospital’s lab and turned in my paperwork.  They were a little confused by the cancer hospital’s paperwork but eventually figured it out.  A few people had to get involved to input everything into the computer, then I gave my blood and my urine and left to go get a Pepsi in the cafeteria and made another stop in at the chapel.  Thank God for that chapel. I hope God doesn’t mind that I sat and prayed and drank my soda, too.  Someone was walking around trying to figure out how the stained glass windows were made…

It didn’t get better…

The next day, I had a message from the cancer hospital machine. It was from someone I did not know but I returned the call thinking that they just wanted to pressure me into scheduling surgery again or ask me an insurance question.  Boy was I wrong…

“Our paperwork has been defaced!” the woman began.  Huh?  “It is unlawful for a doctor’s orders to be defaced!”  I was tired and the call baffled me but I began to understand that this caller was hostile.

Are you accusing me of doing something illegal,” I asked. “I didn’t say illegal.  I said unlawful,” the woman said.  “Well, it means the same thing!  And if you are accusing someone of a crime (I could not grasp what in the world she was talking about), I should think a lawyer should be present!”

(FYI, after the call, I looked it up. Illegal is against the law and unlawful means not authorized. Still it felt like a call from an investigator on the new show called, “CSI Cancer Hospital Monsters”!)

“The doctor gave you a lab slip for tests yesterday…and they were written on!  Then, the (chapel) hospital faxed the slip over to the doctor (to confirm the order) who turned it over to me when they saw the writing on their order.  NOBODY writes on doctors’ orders especially if they are from XYZ Cancer Center!” she snorted out.

What?? or WTF (sorry) I was really thinking. but refrained from saying.  “Did they have a pink flower drawn on them? Were they crumpled up? What exactly is the problem?” I asked.  “All I did was turn in the slip, sit down, get up when I was called, gave my blood and left a urine sample and left. Whatever happened or was done to the orders, I am innocent!”

“Well,” she huffed.  “Someone wrote instructions under one of the tests and it is unlawful to write on a doctor’s order. IF it was you, you will have jeopardized your relationship with this hospital.  IF it wasn’t you or to find out who it was, I am going to request that the (chapel) hospital open an investigation!!”

Well, I had had enough of them and in a loud and firm, trying-to-be-polite voice, I told her first to compare the handwriting in my chart to the handwriting added on to the order and she would find it was not my writing.  It wasn’t.  I then proceeded to tell her to stop everyone/anyone from their organization from calling me and that I wanted to end the relationship with that hospital immediately. I don’t care if I have to go the moon for help. I don’t need people treating me like that.  No one does. I felt so sad in that moment for the people who are sick and are at their mercy and can’t advocate for themselves–or don’t have someone to help them–and go there expecting to save their lives or extend their time and are stuck in the machine.

In order to heal, you need to be at peace.  I initially liked the doctor–I could tell that she was very smart and I still think she is–that is why I went back twice.  But I did not like the control that the machine or monster that is “THE” cancer center, according to their ‘CSI’ representative, had over the doctors and the process.  There was no way on God’s green earth that I would willingly lay down there, probably wake up with incisions all over my body like a messy road map only to find out what organs they decided to remove, need a plastic surgeon later to put me back together, all while being sick with a serious infection that wasn’t resolved ahead of time, making recovery longer–only to be given Motrin as I could see me crying in pain–while I am sure I would be suffering terribly–and in need of a second surgery to put my body back together again. Nope. It is not going to happen.

I was so traumatized by those two days last week that I could not even write or talk about it all to anyone.  The very good news that came out of all of that is that I do know now is that I can take my time to find both a doctor I can trust who works for a hospital I respect and even explore some alternative treatments. I will pace myself and get the HAI infection resolved first.  I might even feel a bunch better after that and will be better able to figure out the bigger problem the back doctor pointed out, and I agree.

In the end, listen to your heart, your soul and or your gut.  If you start to feel intimidated and overwhelmed, pressured and uncomfortable and the answers you are being given don’t line up with what you know to be the truth or feel that the things you need done to be comfortable are being ignored or belittled, do not stop there and just accept the solution before you.  You will find another solution. Leave it all in God’s hands.  I will and I did.

Sending much love and many hugs,

Jane

PS:  I have written a post on the treats that we really need for the dogs’ treat bucket. I ordered $300 of treats and food a month ago (so grateful to our angels) but they will run out by the time the new treats hopefully come in.  The dogs need something to do every day–especially when some cannot even walk to run and play or have other disabilities.  It is their exercise and play time really–it gives them something to look forward to.

Story Links:

RR Herd: Please Help Fill Our ‘Tank’

The Two Uh-Oh’s

 

 

 

 

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