PAIN OH MY....

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 130am...it 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. 
NO. SUCH. LUCK.
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 pain...now 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.
THANK.YOU.GOD!!!
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!
 

THE HITS KEEP COMING...

The hits keep coming...one right after the next.

I had a nice weekend planned for Scott for his birthday. His birthday is on Tuesday, but I wanted to do something special for him.   Ashley has a Hilton hook up and got us a room at the Hilton Tapiao Cliffs Resort.  I told him we were going on a Stay-cation and we weren't to talk about cancer the whole week...it would be cancer free.  Let's face it, we both REALLY needed it.

Friday morning I woke up about 4am, with right kidney pain.

It went away about 1pm and I went on with my day...no big deal. 

I was thinking I just hadn't drank enough water. We checked into the hotel about 9pm Friday night and just really enjoyed each other. We had dinner AND dessert (deep dish apple pie) DELICIOUS!!!

Scott is wonderful.  I really got lucky the night I met him. 

:)

So I had called family and friends and told them we had a cabana rented from 10am-6pm Saturday and to come hang out and enjoy the resort with us.  It couldn't have worked out better!

We got to the pool and mostly everyone was there already. When we checked in the guy said "it looks like someone already checked in for your cabana already" I quickly walked off...Scott being Scott says to me "what someone is in our cabana, did you pay for it?" I said I did and that we needed to find out who was in our cabana.  Prior to this he mentioned calling Ashley and having her bring the kids to the hotel to hang out, I made up some lie about Ashley being at Jesse and Amanda's pool hanging with them all day.  He seemed a little bummed.  So you can imagine his surprise when we walked up to the cabana and ASHLEY, BRECKIN, ELLA, KATRINA, BRINLEY, BANNON, AND TAMMY were all waiting for us! :) He said "Oh they all came?" ha ha I said more are on the way too! He was even more surprised! It couldn't have worked out better!

When I woke Saturday it was about 4am and I was having the same right side kidney pain...this time much worse than the day prior.  I got up and drank a bunch of water and tried to "sleep it off"

I took a hot bath and was just going to TUFF it out.  I was not going to let this stop me from enjoying the day or the weekend.

We played all day in the sun and I stayed as hydrated as possible.  Drinking LOTS of water. With the tumors in my pelvis I have some bleeding. Since the tumors take up 1/3 of my vagina I am also not able to use tampons, so it makes enjoying the pool a little difficult.  Just ONE more thing cancer has taken from me.  The ability to GET IN THE WATER! Which sucks so bad, I LOVE the pool for one and two it's freaking 108 degrees outside, who doesn't want to be in the pool???

Well it was about 3pm and I had about all I could handle.  I told Scott I just needed to get back to the room and lay down.  He was insisting I go to the ER. 

You all know me, I didn't want to go.  Why would I, when every time I have gone to the ER it ends in at least a weeks stay.  I HATE THE ER!

I took a hot bath, it seemed to help before.  An hour later I was getting out of the tub and packing my things.  We decided I needed the ER after all. 

I kept thinking "the right adrenal has a tumor on it" which is the side am having all the pain.

After getting checked in, they checked urine, blood and did a CT Scan. 

The urine was clear.  The blood was normal, however my platelets were 118, they were 150 on Thursday. So they went down. As for the CT Scan, it showed my ureters were being compressed by the tumors in my pelvis.  The ureters are the little tubes that carry your urine from your kidneys to bladder, then the bladder releases it.  Since mine are being compressed I am not able to empty my bladder all the way, which means the urine is being backed up from my bladder to my kidneys. Which is why I am having a lot of pelvic pain. 

ALSO...the CT showed fluid in my right kidney.  Which confirms the blockage in my ureters.

which is the source of the pain in my lower back.

So the ER physician called my gyn/onc. His PA Katie came in to see me.  This is after they decided to admit me...see I told you, every ER visit turns into me being admitted.

WHATEVER...

They finally get me into a room, and all hooked up to the machines, ran over my history when Katie came in to see me. At this point it's about 11:30pm I have already been given morphine and toradol for the pain and I am exhausted.  NOT the right time to have a serious conversation.  You know how hard it is to focus or keep your eyes OPEN?!?! 

Scott is there so he of course has like 1000 questions.  I love this guy, but 11:30pm after a morphine cocktail not in the mood for 1000 questions game.

Katie tells me the reason they wanted to admit me was so that I could have a procedure done Sunday.  (today) This procedure is called Nephrostomy Tube Placement.  What this procedure is, they place little drain tubes from your kidneys that come out your back and drain into a bag.  These can be temporary and can be removed after the tumors have shrank, and the ureters are working like they should.  HOWEVER, who wants this?  Not me.  I think having this procedure done would greatly decrease my quality of life.  Not that I go out a lot, but who wants to carry a pee bag with them to dinner?

They couldn't get the procedure scheduled (thank goodness) since the IR doc was booked.  So instead they released me and sent me home with pain medication.  I will follow up with my gyn/onc at 8am on Monday and I hope he has a better plan than Neph tube placement. Scott and I are in agreement that there has to be something else they can do. 

However, if my kidney function is compromised I can't get chemo or radiation to shrink the tumors to relieve the ureters.  So we will see what Dr. Schulmbrecht has to say tomorrow. If something isn't done, the blockage can damage my kidney. 

 

Like I need that on top of everything else.

So for now it's pain meds, and water!

 

Tanya