Thursday, June 20, 2013


Hello! It's time for an update!
A lot has happened since I posted last... 

I saw my Dr. Schlumbrecht on Monday (06.03.13) that appointment in itself was RIDICULOUS, I get to the check in desk the girl tells me "I don't show you on the schedule, let me contact the scheduler and see what's going on, have a seat and I'll call you back up when I hear from her".  A short time later she calls me back up to the desk and says "the scheduler is saying you need to go down stairs and get labs, then back up here to see Katie PA." I go get labs and return to the office.  I bring it to her attention that I was seen in the hospital Saturday by Katie PA and she told me I needed to follow up with Dr. Schulmbrecht since he knew my history and would have more options for me other than just getting the Nephrostomy Tubes.  Minutes later she says "she just has to add you to the schedule and then I can check you in and they can call you back.  However Dr. Schulmbrecht isn't here today so you'll see his PA Katie".   I told her to cancel the appointment then since I saw Katie PA in the hospital and she told me to follow up with Dr. Schlumbrecht since he knew my history and might have more options for me. So she says have a seat and she would see what she could do. Finally I am getting really annoyed and say its time to go. So I tell the check in girl "we are leaving and to call me when she can figure things out". She says well the scheduler is telling me not to let you leave. Right then the MA Pam calls my name to take me back to a room.  We go back with her. Between me and you I didn't care for MA Pam much.  She puts us in a consultation room and says Katie PA will be right in.  Before I know it MA Pam comes in and asks me if I have eaten anything so far today (Monday) I respond a small amount of water.  She leaves.  Then comes in again says she is moving me to a procedure room, Dr. Schulmbrecht came in to see me specifically and needs to do an exam.  I asked her if she could please send the doctor in I would like to speak to him first.  She says "he will talk to you in the procedure room."  I tell her I would like to talk to him now since nobody has even told me what is going on I would like answers, he isn't doing an exam on me until I speak to him."  Pretty soon Joelle another PA comes in...who the F is she???, I am sure I asked to see the DOCTOR!  She comes in and introduces herself. 
Now I don't know if you know this about me or not, but I am BIG on PERSONAL SPACE...I HATE when someone is IN my PERSONAL SPACE.  So when she shakes my hand she just holds onto it.  I am talking for like 5+ minutes, at this point I am PULLING my hand out of hers.  She just keeps holding it and talking.  To make this situation even WORSE I am sitting on a couch, which one end is in a corner of the room and that happens to be where I am sitting.  With my back to the wall I am facing the door.  She is STILL holding my hand and now sits down on the couch, if she was sitting ANY closer to me she would be SITTING on my lap.  I immediately don't like her.  I finally get my hand free.  I don't like her one bit.  As soon as I open my mouth she shuts me down.  OK...REALLY don't like her.  She says "can you come with me into the procedure room so the doctor can do an exam"  I said like I told Pam, What does he need to do an exam for?"  She FINALLY lets me talk and FINALLY tells me he isn't doing a physical just a heart and lungs check.  OK, was that so hard to tell the patient?  I don't think so. 
While we were in the consultation room she tells me Dr. Schulmbrecht wants to admit me to Gateway to have the Nephrostomy Tube Placement done.  After she leaves the room I am immediately upset and just lost it.
Tears come to my eyes. I don't want this procedure.  I am upset and freaking out.
We move into the procedure room to meet with Dr. Schulmbrecht.  He comes in and right away notices I am upset and asks if I am OK and why am I upset.  I tell him I don't want the neph tubes.
He is a great doctor.  I couldn't have asked for a better doctor. He starts talking to me and telling me about this procedure and why he suggests I have it done.  He also says "any medical decision is up to me, you are the one that gets to make the decisions, I am just here to give you guidance"  Once we we're done talking and he answered all my questions and calmed me down a bit we all decided the best bet was to be admitted to Gateway and have the neph tubes placed.  They were working on a room and would call me as soon as it was ready.  Ashley ran to Colleen's to drop off the kids, dropped me off at home on her way so I could pack my stuff and get my girls situated.
We were admitted about 1130-12 Monday June 3rd.  My procedure was scheduled for 330pm.  Keep in mind I hadn't been feeling well and was in a lot of pain so the last meal I had was Saturday around 11am.  I had a few juiced drinks on Sunday but no solid food. I get to Gateway and get checked into my room.  Clearly still upset and crying from time to time.  The CNA was trying to get my vitals and had to come back a few different times since I was so upset my blood pressure was off the charts!  I am so thankful Ashley was able to be there with me.  I also want to thank Martha (my brother in-law's mother) for calling me and talking with me.  I really enjoyed our conversation.  It's just what I needed to hear before having this procedure done. Thanks again Martha! I love you!
FINALLY transportation came to pick me up and take me down to the OR.  I didn't end up getting the procedure until about 430-5!  Thank goodness they put me out for the procedure.  When I woke up I was SOOO thirsty! I held onto my water glass and wasn't giving it up for anything.  I even fell asleep with my tight grip on my cup. Ha ha....I was inpatient for 3 days and had chemo on day 3.  After being discharged I was sent home.  Under the impression I would feel crummy for a few days A few days went by, a few more and a few more...STILL feeling like crap!
Mom and Dad were down here for the week, they came down as soon as they got word I was being admitted.  The following Wednesday I had follow-ups with my blood doctor, we will call him Dr. K for short.  Plus labs and a seeing Dr. Schulmbrecht. 
I had labs first.  Platelets were 157 (about) even AFTER chemo!!!!  My WBC was low, but that was to be expected since I had chemo.  Dr. K said I wouldn't need to follow up with him anymore unless something happened.  Let's pray that holds true and I never have to see him again!
I then met with Dr. Schulmbrecht, he was so excited to see my platelets so high.  We talked about my neph tube and I told him how much I hated them.  He said due to the color of the fluid (still a red color) he wanted me to keep them in for at least 2 more weeks.  UGH!  Whatever.  At this point I am not happy but I will do whatever needs to be done to save my kidneys. 
I went to Show Low this past week (06.12.13-06.17.13) Peanut had her annual dance recital, I wasn't going to miss this for the world.  She danced FRIDAY AND SATURDAY...and I am SOO PROUD OF HER...she is an amazing little soul.
WELL, at this point I'm fully aware my body likes to do what it wants with no regard for me. So I felt OK on Friday, really tired and slight discomfort. I had lunch with Katrina and Peanut.  After lunch was over I asked Katrina to take me back to her house, I just needed some pain pills and a nap. 
I got all cozy in her recliner and planned on sleeping for a few hours and then go to the recital. 
 I took something for pain at 1pm.  I never really fell asleep just kind of faded in and out.  I went to get up to use the rest room and had THE WORST kidney pain I have ever experienced in my life on the left side.  On a pain scale this pain was about a 12! To top it off I was STUCK in the recliner and couldn't get out!! Every time I would move it would recline that much more.  Literally after 10 minutes I finally got out of that damn chair.  I couldn't hardly breathe or walk.  I made it to the bathroom.  At this point it is about 430pm.  So I am in the clear to take more pain pills. I do.
I get in bed and no sooner do I lay down is that SHARP pain back on the left side! I couldn't even move.  I took two pain pills that didn't even touch the pain. After being stuck in that position and not being able to breathe I called mom to come over.  Not sure I WANT to go to the ER in SHOW LOW no less, but I thought I would get her take on it.  We both decided against the ER.  I finally got a hold of Dr. Schulmbrecht and he called in a new script of pain pills, dad gave me some muscle relaxers (which help SO MUCH) I was in bed feeling like crap for 2 full days.  Saturday I was able to get up and make it to the second portion of Peanuts dance recital.  I still slept half this day away. 
Upon coming home Dr. Schulmbrecht wanted me to be seen in IR and have the doctor that placed my neph tubes check them to make sure they are OK.  Since I am having to be on pain meds every 4 hours or else I am in so much pain I can't even see straight.
That lovely appointment was today. (06.20.13), I was scheduled at 1030am to check in, procedure at 1230pm.  The RN that called me last night told me to hold off on all meds until after the procedure.  UH, even pain meds?  I asked she said even pain meds.  I knew from the get go today was going to be tuff. 
My last dose of pain meds was at was about 11am when I couldn't take it any longer and asked for something for pain.  She came in with 1mm, OK I know that's not going to last long, but I had high hopes I would be called back for the procedure BEFORE the meds wore off. 
About 2pm they finally came to get me, at this point I was so uncomfortable I couldn't sit still, walking didn't help, sitting or laying didn't help.  It was terrible.
I get into the OR and my nurse says I have something for the pain for you...Oh thank goodness!
At this point I am sitting Indian style with my arms wrapped around a pillow, fists clinched tears rolling down my face.  She says "there you should start feeling some relief soon" I still feel nothing but pain...this process goes on for at least 15 minutes.  When I hear Dr. Price walk in.  He is asking me questions about my pain level and I can see him nod to the RN to give me more.
He proceeds with the procedure.  Flushing contrast through my kidneys and taking pictures via ultrasound.  As SOON as he starts I scream out in pain...It HURTS so bad, It felt like my whole left side was on fire and being ripped off at the same time.  I just kept screaming...The RN pushes more meds...still I have the moving on to the right side I hear him say.  Crying and so tense I can't handle him to do the right side, I can't!!  Sure enough the pain is there and I can't even breathe, screaming OUCH!!!!  He says OK Tanya we are all done.
Basically what we found out today is that my kidneys are VERY sensitive.  Ya Think??
All the tubes are perfectly fine, in good condition and nothing seems to show as abnormal on my US.
The source for the pain is the tubes.  GREAT!  Once my body heals the pain should start to subside.  Until then pain medication  and taking it easy. GREAT.

To top of the day, I have been having a really tender scalp...For my SCCC/LCCC sisters out there reading you know what this means...for the rest of you that don't it means my hair is starting to fall out.  I will have to shave my head again here soon.  I can't stand it being on my pillow, or just my hair blowing in the wind is painful.  It only took ONE round, ONE round of this new chemo to make my hair start falling out.  I think this is HORSESHIT! I hate that I have to go through all this again, I hate that I am in pain and that my cancer is back and in a few different areas of my body. 
I am NOT giving up, I will continue to fight!

I want to say sorry for not updating you all sooner, I know it has been a few weeks and you all were starting to send text messages and leave me voicemail, so I figured now is as good as time as any to put it all into words.  I have had a rough few weeks.  I eve  started this post about 2 weeks ago and typed a few paragraphs and quit, then a few more and quit. 

So here is the final draft!

1 comment:

  1. I've been checking every day to see an update. Glad there was one today, but sad to hear you've been in so much pain. you are such a fighter. Thinking of you everyday. Love, Amber