Sunday, April 25, 2021

Where I have been

Where I have been 


Many people have reached out to me to see if I am ok being as I haven’t posted much lately... I am ok now but wasn’t there for awhile. 


Let me start from the beginning of my downhill slide.


Wednesday, January 20


I had to get an endoscopy and colonoscopy because my iron numbers had been dropping, and I had been more tired than usual.


Everything started out well...got to the procedure center, checked in, taken back to my bed, got my IV and was wheeled back for the procedures.


They had me roll myself onto my side, placed a bite block in my mouth with a hole in it for them to be able to stick the camera down my throat...then they started inserting the tube down my throat without me being fully sedated...this is where it went to total shit.


I felt like it was forever with them trying to shove the scope down my throat with me trying to move my head from side to side trying to tell them that I was still awake. Someone noticed that something wasn’t right and pulled it out.


Once they took the bite block out, I started bawling and hyperventilating telling them that I was awake... I hadn’t been sedated properly.


They started a new IV to sedate me again and this one worked.


They finished the procedures, had me wake up more and then wheeled me out to Eric. After getting in our car, I looked at Eric and lost it... I broke down like I had never broke down before. I told him about what happened through panicked sobs...with each word I spoke it took me deeper into the panic.


He sat and held me while I cried into his chest...while I told him that I felt completely violated from them shoving a tube down my throat...me trying my hardest to get it to stop but no body was hearing me.


When we got back home I wrote and sent the following letter.


Letter to location 

To whom it may concern


I just left the XYZ location for an endoscopy and colonoscopy, and am extremely unhappy with the experience due to lack of attention to me as a person, not just a number being sent through the line.


The nurse who hooked me up to the IV, unknowingly missed my vein, so when I was back in the room to begin the endoscopy, I was NOT asleep from the IV medicine because the IV was NOT in a vein. She didn’t draw blood from the vein to make sure she actually hit a vein. 


For what it is worth, I receive MRIs and scans every 3 months, so I know how easy it is for the IV giver to draw back to make sure there is blood return to make sure the IV is in an actual vein.


As soon as they started putting the camera down my throat, I was gagging and coughing trying to tell them that I WAS AWAKE. I am not sure how long they were trying to force the camera down my throat before someone heard me say, “I AM STILL AWAKE.”


They immediately stopped, pulled the camera out, and started a new IV.


But my question is, is there not a system in place to double check to make sure the patient is actually out before going forward? I feel like, they were in such a hurry to keep the line moving, this extremely important step was overlooked.


I have had many traumatic health events in my life, yet I have never left feeling disappointed/neglected in the care I have received.


I am writing this for several reasons: one, I am extremely upset and feel traumatized from this, two, I don’t want the speed of getting things done to compromise the care and safety of the patients, three, to be assured that what happened doesn’t happen in the future, to myself or others. 


With that in mind, I need to receive a response on why there aren’t more consistent checks on the patients at the beginning of the procedure to make sure they are not still aware/awake.  Even a simple “are you awake” question would have prevented this issue.

If there are already procedures to make sure the patient is properly under anesthesia, I similarly need a response as to why they weren’t followed, or failed in my case. 


I wish I did not need to write this letter, but as I am still reeling from the experience, I need to receive a response in order to begin to deal with the trauma I have received.


I hope to hear from you soon with a written response.


Sincerely, 

Renee Sendelbach


Thursday 


I received 3 calls from different people from the center checking on me, apologizing and telling me that this had never happened. I was told they were going to change the process to ensure that the patient was actually properly sedated.


I was in a constant state of panic. 


I think I took more Ativan that week than I had in the past year.


Friday


Was more of the same as Thursday...panic attacks, Ativan, crying and Eric trying to soothe me.


Saturday 


I woke up in a panic and crying again. Then I started thinking about how a few people who I shared my complaint letter with hadn’t reached out to check in on me and that planted a new seed of being p*ssed and hurt.


SO, I wrote a b*tchy note to some of my friends telling them that I was very hurt at their lack of concern about me after I shared the letter that I wrote to the procedure center with me telling them what a sh*tty job they had done.


Side note- When I am having a panic attack, I am not able to think rationally. When I am not able think rationally, my anxiety mind easily takes control and I say stuff that I am not proud.


All I wanted was a check in text, but it all got misconstrued and turned into a bigger sh*t show. (I have since apologized for the way I reacted because I had a picture in my mind about how they would/should react/respond. I now see just because I think someone should react a certain way really doesn’t mean anything because I know I personally don’t always react to situations the way others think I would/should.) 


Later that day a few of them showed up at my door to try to cheer me up, but I freaked out because I wasn’t in a mental state to deal with anything unexpected, so I told them to leave and shut the door...which caused more hurt feelings.


Sunday 


I decided that I wanted to look into legal action to hopefully give me the feeling that I had some control over the situation.


Monday


I heard back from the law firms we contacted to be told that I didn’t have a case because in Texas it is near impossible to receive compensation for mental distress if I wasn’t physically hurt...that caused another spiral down.


From that, I decided that I needed to find a therapist who deals with trauma. 


I found a group of therapists and one of them had a weekly Tuesday opening starting immediately. We started with talk therapy to get me out of the fight or flight state that I was stuck in.


We moved on to EMDR about 6 weeks later. (I will write more about EMDR later because I have noticed some great things from it.)


I honestly don’t remember what we talked about the first few weeks because I was only able to focus on putting one foot in front of the other.


I couldn’t get past the feeling of pure violation... I have never been assaulted in my life, but after talking to someone who has been assaulted she confirmed that the feelings I was having were a lot like her feelings after her assault...violated, scared, mad and untrusting. 


I then had to come to terms with the mistrust for the medical community this caused which further freaked me out because I have had to (and still do) depend on the medical community to keep me alive for the past 10 years. 



Part 2


The following week I decided that I needed to get back on prescription medication for anxiety and depression. 


That was a whole other process in itself. Thankfully I already have a psychiatrist, so I wasn’t starting from square one...but we were starting from square one trying to figure out what Rxs worked best for me.


At first, I was on Wellbutrin and Zoloft. The Wellbutrin worked well for the depression, but the Zoloft made me sleepy during the day but kept me awake at night... I figured this out by taking it in the morning at first then switched to night.


After figuring out Zoloft wasn’t for me, I switched back to the Rx I had taken in the past (I don’t remember name). But that one made me twitch at night... I would wake myself and Eric up from the twitching. With me not able to get a good night sleep, I felt even worse.


So my doctor switched me to XYX. 


The combination of Wellbutrin and XYZ had no crazy side effects, so I was with the new Rxs. 


It took a few weeks for the Rxs to really start working to their fullest, but little by little, I started to feel better... I wasn’t breaking down at the smallest of things, I wasn’t replaying the same scenarios in my mind, and I could talk about the event without totally breaking down.


With weekly talk therapy, new head meds, light exercise (I tried to what I was doing before but it seemed to raise my anxiety), I was finally feeling much better!


I was good for about 3 weeks until I got my second vaccine. The vaccine sent my immune system into overdrive (which it is supposed to) but for me, that caused me to have a GVH flair.


The flair started as a normal flair, dry eyes, dry lady parts, constant headache, and extreme fatigue. Then the it turned into a massive flair and went to my left eye... my eye was swollen shut, felt like I had sandpaper in my eyelid, was super blurry and looking at any kind of screen literally made my eye close because it was so sensitive. 




2 weeks later 




3 eye doctor appointments later, 2 Rx eyedrops it is just now getting better. I do have an appointment with an eye specialist tomorrow because it is still sensitive and is still blurry.


So my friends, that is where I have been...putting myself back together.


Thank you all who reached out to check on me... I do greatly appreciate it.


I hope you have had a better start to your year than the sh*tshow I had.

Wednesday, March 17, 2021

10 years Metastatic





10 years metastatic 


Today marks 10 years since I was told the stage 1 breast cancer had metastasized to stage 4 breast cancer (MBC)* a mere year and a half after finishing treatment for stage 1 Triple Negative breast cancer.


I will never forget the day Dr. H told us that the cancer was not only back but had grown and had taken up residence in my bones and lungs. I honestly had no idea that was even possible...not going to say no one told me that it was possible because I am sure that they did tell me this but I choose to not hear it. 


So when I heard that the survival rate was around 3-4 years, I once again chose not to hear it (yes, I am fiercely stubborn).


The first line treatment was Abraxane and lasted 3 months until the cancer outsmarted the chemo and the tumor in my lungs started to grow more...a lot more.


Because the chemo wasn’t working, I was then put on carboplatin + gemzer + a trial PARP and 6 weeks later, the scans showed No Evidence of Disease (NED)!


I was in shock when Dr.H told me this and in even more in shock when she told I didn’t get to stop chemo. (YES... I honestly thought that when I heard NED, I would also hear “no more chemo” - I was wrong...way wrong.)


This is where it really set in that MBC was a whole different beast than lower stages and some kind of treatment was always going to be needed.


I stayed on that 3 part combo until my blood counts couldn’t recover even after multiple blood transfusions. After Dr.H worked it out with the trial, it was decided that I could stay on just the PARP to see how I did.


I continued to receive NED scans, gathered my strength back and was thinking life with MBC was no problem. 


——————

That was, until September, 2012 when I had a seizure while out shopping with my son...it was so scary to see the fear in his sweet eyes and me not knowing what was going on. After a quick call to Dr. H, we went to the hospital for an MRI when I was told that I had a mass growing in my brain. 


I had brain surgery a few days later where the doctor found a sack of fluid and solid tumor “together” (still not 100% sure what that meant) about the size of a walnut.


Recovering from that surgery was difficult because of the steroids. I developed steroid psychosis and had to go to back to the hospital for a few days to get it straightened out. Thankfully I got it under control and was ready to continue on.


A few weeks later, I was having panic attack after panic attack and was convinced that the tumor was growing again...went in for MRI...and it was growing again.


So not even 4 months after the first brain surgery I was going back in for a second brain surgery. This one again found the same type of triple negative breast cancer in my brain.


The second surgery left me without feeling in my right foot and a hand/arm thing...I hold my right forearm up to my chest vs down by my side. 


I had to use a walker after that surgery until I could learn to trust that my leg was actually there and still worked since I couldn’t feel it. 


I had to teach myself how to drive with both feet because I couldn’t/still can’t move my right foot to the break...me and my mom started with me driving in a church parking and slowly progressed. I still don’t like to drive because the mental energy it takes me...it exhausts me.


All was going good for 6 months until one day I was out shopping for my birthday and my right leg felt more numb and heavier than normal. I instantly knew something was up, so I called Dr. H and once again, an MRI confirmed something was up...the tumor was back in the exact same spot.


Back in for brain surgery #3 within 9 months.


When I woke up from the 3rd surgery, I looked at my husband and told him that it was all good...that I felt like the tumor was gone! And it was and has stayed gone since May, 2013!




I started the oral chemo Zometa. This chemo came with odd side effects...blisters/thick painful bottom of the feet, exhaustion and my finger prints peeled off. (I still can’t use the finger print scans for my devices.)


All was going good until June, 2016 when I was diagnosed with a secondary cancer of MDS (pre-leukemia). The best way to treat MDS was a bone marrow transplant to which I was so extremely lucky/fortunate/blessed (I don’t like to use that word  blessed because I think about all the others in this situation who it wasn’t like that for them...then I spiral wondering why was I blessed but not others). But “Be The Match” found a match for me in a few short months. This was huge because sometimes it takes years for a match to be found.


The bone marrow transplant was hands down the hardest thing I have ever gone through...4 straight days of heavy duty chemo, the transplant day, and around day 12 after transplant the hardcore side effects started and lasted about 8 weeks. 

It took me a long time to feel good again, but it came!


I do still have graft vs host flairs from transplant, numb foot (yes, sometimes it still surprises me that I can’t feel my foot), sleep at least 10 hours a night, anxiety and depression, and other lasting baggage from those 10 years.


BUT here I am, LIVING 10 years metastatic and 4 years post transplant! 




*Metastatic breast cancer and Stage 4 breast cancer are the same thing. MBC is when breast cancer travels to a different part(s) of the body outside the breast. The most common places the breast cancer travels to is the lungs, liver, bones and brain

Saturday, March 6, 2021

Dealing with Depression



Dealing with Depression 


Since I wrote about noticing the depression creeping in a few days ago, I also started doing my list of things that I know help me...

  • Talk therapy (from this, I am learning how to look at my emotions from an unattached place and sit with them...ask them what they are trying to tell me vs me trying to shut them up as quickly as possible because sitting with them is hard and uncomfortable.)
  • daily score (I score my mood throughout the day (not in a bad way...it is nice for me to have a tangible number). If I notice a lower score for a few days in a row, I look into what might be happening and adjust accordingly. I would like to note this isn’t always the case if depression is deep...if it is deep, I call my doctor to decide if I need to tweak my medicine.
  • Can I name what it is making me feel the depression (if yes I can name it, I ask myself what it is that I need to not feel depressed...usually it is that I need to love myself more)
  • If I can’t name what is making me feel depressed, I remind myself that feeling sad is ok and I will eventually turn the corner just like I have all the other times in the past.
  • I try my best to find one moment of joy in my day.


Once I start doing the above, I can start to feel the depression easing its grip on me...kinda like a dense heavy fog slowly lifting up. Sometimes it takes a day or two, sometimes it takes a few weeks before, sometimes it goes up and down like a roller coaster. 


I want to share this with you because in the past,I have been ashamed of depression, and I am learning/realizing that I didn’t do anything to cause it and I am working on it, so there is nothing to be ashamed of.

Friday, March 5, 2021

Practice the pause

Practice the pause 






Something I have been working VERY hard on...pausing before reacting...pausing before saying something harsh (either to myself or others), pausing to ask myself if the reaction I want to give will sit well with me 5 minutes later...


From me practicing the pause, I have learned a lot about myself...99% of my initial reactions used to be a reaction from a place of fear...fear I would look weak, fear I wasn’t being taken seriously, fear I wasn’t enough...


So much fear has been hiding in all the stories I have attached myself to...stories that weren’t and still aren’t true.


But by practicing the pause, I have been able to catch the words that I so wanted to spit out to prove that I was right, to spit out to make myself feel better, to spit just because I could.


From practicing the pause, I am gaining so much compassion for myself and others in those few seconds between my initial thought and deciding how I want to react vs just reacting.

Thursday, April 16, 2020

My Why’s


Why it matters to me 


I have thought long and hard about how to write this, and I finally feel like I have captured my truth.


I have noticed a trend that tears my heart up...people seeing issues in the world that don’t directly effect them so they easily write it off as “not my problem.”


Or people saying they didn’t cause the problem, so “not my problem.”


Or people who have found success believing they did it ALL on their own without help from anyone.


Or now with the virus... I feel like so many people who are healthy don’t see the need to stay home because after all, they are healthy and believe that they don’t “deserve” to be treated like they are part of the problem.


But here is how I look at these outlooks of “not my problem” or “you should have made better life choices” or “sorry for you” mentalities... I look at these thoughts in reference to my life...the fact that I am still f-ing alive because so many people used their lives on bigger things than themselves.


I look at all the doctors in my life. They wanted better for the collective...they all had/have a desire to do something for humanity...they put in YEARS of their lives to be able to save my life.


I look at the 26 year old stranger who donated his bone marrow to me. He had nothing to gain from him donating his bone marrow to me. He didn’t/doesn’t know me, didn’t know that at the time I was a 36 year old mom of an 8 year old. He knew none of that yet still signed up for the process that included daily injections for 5 days of filgrastim (increases the number of blood forming cells) then one day of donation and up to 7 days of recovery. ALL of this...without knowing me but to save my life.


I look at the medication that I have needed to help me heal, help my body fight cancer, help my mind find peace from anxiety and depression...all the effort that went into figuring out the formulas for all of it.


I look at when my mom went back to school when I was in 6th grade and how we used food stamps for 2 years to make ends meet. How the help we needed was provided to us without questions...without judgment...without making us feel guilty.


I look at all the people who take time to teach others their crafts without the expectations of payment...they teach because they truly want to better others with what they know.


I look at it all with a soft heart knowing that I would not be where I am at without help from others.


I want to ask you a favor...next time you see someone who needs help (maybe someone on the street asking for a dollar or someone needing a little more explanation to understand what you are trying to explain) I want to ask you before judging their current situation, to instead remember a time when you needed help and that help was given to you.


I want to ask you to walk down from your ivory tower and realize all the hands that helped build said ivory tower.


These are my why’s...my why’s of why I will always try to help others...because without the help from others I would not be where I am at today.




Tuesday, April 14, 2020

Permission to call me out

A long time ago, my husband and I gave each other permission to call each other out...


We can call each other out on our own BS.


Some of the things we call each other on is hard to both be the caller of or the receiver of...seeing your sh*t is hard BUT necessary.


These past few days I have been letting anxiety clench me in it’s jaws...yes, I realize I am being dramatic.


But after some self-reflection journaling, meditation, a talk about the monsters in my closet with my husband, and taking a hard look at what I am or am not doing to contribute to the anxiety or the soothing of it, I have decided that I am done rolling around in my mind...rolling around in my self pity...rolling around in the 500 yards of sh*t because I have already crawled through miles of sh*t and deep down I know what I need to do to get through this.


I am going to stop dwelling in what was because what was isn’t what is and the more I try to hold on to what was, the more strife I am causing myself. 


I am going to stop dwelling in what sucks about whatever situation I am dwelling in because I realize that by dwelling in the suck, I am adding fuel to the fire instead of dumping water on it to put it out.


I am going to practice more of what I preach with not beating myself up because something isn’t 100% correct or easy and acknowledge that me showing up and doing something...anything is way more than simply sitting back and running  scenarios through my mind.


Today has already been SO MUCH BETTER simply because I made the decision to shift my focus...shifted from looking at what was wrong/annoying/hard/lost to intentionally looking for where the light is leaking through and finding cool shapes in the shadows.


I hope you can find something fun in the shadows too.

Monday, December 16, 2019

“Angel Wishes” - new artwork


“Angel Wishes” -1







“Angel Wishes” -2


I created this series, “Angel Wishes” to enfuse your space full of sparkly energy.


I envision these pieces of art hanging like Angels on your wall sprinkling down Love & Light to you.


I used many, MANY layers of acrylic paint to build up the layers of texture on the canvas, along with a variety of different brushes and application techniques to add even more depth and texture.


The piece is then sealed with a satin finish.



“Angel Wishes”

20x20 inches

$444 (S&H INCLUED)


If you have additional questions or would like a few more pictures, please let me know.

ReneeInCancerLand@gmail.com