1st Annual Fall Fling

Join us for the 1st annual Fall Fling at Flag Hollow Ranch!  

Do a little shopping at the silent auction and the many vendor booths.  Christmas is right around the corner, why not do your shopping while supporting a great cause.  Try your change at winning a raffle.  Eat some good food and play a game or two.  Ring in fall with a hay ride.  There is no better way to spend a day with family.  ALL proceeds go directly to Tanya.  We can't wait to see you there!!!

TWISTS AND TURNS OF TREATMENT...

oh you lucky, lucky Hope for Tanya supporters you...

two BLOGS in a week...WWWWHHAAATTT...

 

This morning I woke up feeling SO tired, weak and just overall exhausted.  I haven't had a day yet that I wasn't able to walk from the car to my appointment.  That day came today.  It took EVERYTHING I had to get out of bed, even more to get from the house to the car, and THAT MUCH more to get from the car to the appointment.  I had to use a wheelchair.  My legs are just so

weak, they feel like they will give out at any second. 

 

We found out today this is due to me being severely dehydrated.  Today I was to get labs and an exam by the clinical trial nurses.  When I pulled up in my beautiful maroon Cadillac Scottsdale Healthcare wheelchair they said "get her back and get her on fluids and draw blood now" I looked like a terrible slumped over Tata.  I crawled into bed FREEZING my buns off and they got hot blankets (oh I love those) blood and hooked me to fluid.  I soon was passed out. 

 

A short time later I heard some talking but just didn't bother to move or wake up...I knew mom was there and could handle anything.  I have been blessed with the most amazing mother in the world.  I can't imagine being my care taker.  I sleep all day every day, I hardly eat, I have been vomiting  too much, complaining of gas cramps, that I am hungry but I can't keep it down, sleepy but I can't sleep, hot but I am cold, so thirsty but it comes back up, energy but no energy.  She just helps in any and every way she can, she is nothing short of AMAZING.  She has been outside in the heat (100+ degrees) doing the yard work, cleaning house you name it.  I thank her every day for doing everything for me, but honestly "Thank you" is just so small in the grand scheme of it all.  I can't "thank" her enough and will find a way for the rest of my life to repay her.  THANK YOU MOM, you are the MOST AMAZING WOMAN I have ever met I hope to be half the mom you are one day.

 

When I woke up mom said "I know your awake over there, I hope I got all that right" Haha she knows me so well.  She did great, got it all right.  Filled me in on what they talked about and what IV's I was hooked up to.  Today they hooked me up to a 4 hour infusion of potassium and saline, dexamethasone which is a steroid.  My potassium was extremely low, all my electrolytes were totally out of whack, stomach acid was really high, and extremely dehydrated.  So I was in BAD shape.  After the 4 hour potassium infusion, the dexamethasone that was to help with nausea and to calm my stomach and will help make me hungry so I can eat, boy did it! I was naming off everything I could think of to eat! Haha she also gave me IV Zantac to help ease my stomach acid, which is what might be causing me to not keep anything down.  I have nothing in my stomach, yet I am puking non stop, my stomach acid it on the fritz.   After I woke up a few hours later, I had to pee, I was able to walk to the bathroom alone and not feel like my legs were going to give out under me.  I still needed to use the Cadillac to the car but I felt better.  I even had high hopes of going grocery shopping with mom.  Using the Cadillac of course!! We got home and had to get a few things taken care of when I just didn't have it in me.  Maybe tomorrow! :)

I am feeling so much better than when I woke up this morning thank you to the medical staff at Virginia G. Piper Cancer Center for nursing me back to health.  Your all awesome!!! :)

 

For those of you that have been a little confused about where I am going for this clinical trial and all that we got clarification today... Haha I see Virginia G. Piper Cancer Center in Scottsdale, they are partners with TGen.  TGen is the one that has MY ACTUAL tumor and are testing it and doing research on it.  In about 3 months OR when the testing is done.  Once the testing is done, we will have a meeting with the folks at TGen, they will tell us everything they found with the research on my tumor.  I can't wait for this appointment.  The testing and research they are doing is RARE, because it's so expensive.  We are talking $40,000 or more.  The testing is very close to the human genome, they will take my tumor and test it, find out why it has mutated, how it's mutating, and what drugs to use to kill the cancer. 

Currently my treatment is Friday and off for two weeks and then treatment again Friday.  I know a lot of you have been wanting to know when will we know the drug is working?  Well I will have a Scan on October 10th and that will tell us what the drug is doing.  My last dose will be on October 25th.  Sometime around then I will meet with the folks at TGen and they will give us more information. 

 

I know some of my SCCC/LCCC sisters have asked me about the trial and where to get more information.  If you or anyone you know is interested in a clinical trial, not just for SCCC/LCCC, but for any and all type of advanced staged aggressive cancer call::

 

Joyce Schaffer, MSN RN AOCNS

Patient Care Coordinator

Virginia G. Piper Cancer Center                 Clinical Trials

 Scottsdale Healthcare                       10510 N. 92nd St., STE 200

PROUDLY partners with TGen            Scottsdale, Arizona 85258

 

480.323.1339 phone

480.882.5820 fax

joschaffer@shc.org email

 

Thanks,

Tanya



Good Morning, Good Afternoon and Good Night

Good Morning, Good Afternoon, Good Evening and Good Night! :)

It's been while since I have been on here to update you all. 

I am sorry about that, but I hope you all can understand

WHY I haven't blogged in so long. 

Please understand that, for most it's a simple task as just typing up a message and posting it.

For me it take a lot more.  I get tired really easy, for one and for two most days I hadn't been feeling

very well so typing a blog was the LAST thing on my mind. 

Like I had mentioned in my previous post I have been very sick.  I couldn't keep anything down,

and I was very weak.  Well this has continued for a few more weeks. I was in and out of the clinical

trial getting fluids every other day it seemed. 

Well last Friday I was suppose to get a dose of chemo 

**I WANTED TO POST THIS FOR TANYA BECAUSE SHE NEVER GOT THE CHANCE TO FINISH IT...**

CLINICAL TRIAL...

HELLO :)

I am sorry it's been so long since I have updated.  I am so sorry you all have been kept at arms length not knowing what's going on, or how I am doing or anything for that matter.

 

The past good month has been a trying one for me.  I got really sick, vomiting and not able to keep anything down for a good three weeks.  No matter what, I drank, ate, didn't drink, didn't eat, no matter what  it came up.  Three straight weeks of this.  Nobody could tell me why. It was exhausting.

 

PAIN...oh the pain. I had the worst pelvic pain.  (due to the tumors) I was on pain pills for the pain, which helped the pain, but constipated me, and on top of that I couldn't function.  Every time I would take them they would knock me out.  So I was sleeping mostly all the time.  Sitting down became impossible.  It was so painful to sit on my bottom, no matter what surface.

 

 

CLINICAL TRIAL!!!!

I went in to see T-Gen for a clinical trial consultation.  The day of the appointment they told me they didn't have any studies open for me, but would keep an eye out and would let me know if anything came up.  The day later I got a call saying a trial opened up and I would be a match.  They needed me to come in ASAP for further consultation.  I went in with Scott, Mom and Grandma.  When they told me about a trial that I am eligible for.  Filled me in and all the details and I signed all the paperwork. They told me the first week of the trial was going to be hard.  They do MRI's, blood work, and biopsies.  It's a full week of this each day more MRI's, blood work and a biopsy.  I had a liver biopsy and adrenal biopsy.  The results to these tests are for trial purposes only.  They aren't looking for growth or spread disease or whatever.  These results are just for what the trial is looking for only. 

The trial drug is injected once every two weeks.  The first week I will be really worn down and tired, the week after I should have more energy.  The trial drug has been used in phase 3 studies and they have had much success!  So I am on a phase 3 drug in a phase 1 study.  They have high hopes this will work and so do I!

 

A few weeks ago I got a call from the trial and they told me T-Gen has opened up a study for Small Cell Ovarian Cancer.  They looked at my history and they are very interested in my tumor.  So when they did the biopsies they took extra tissue samples for them.  The best news is that if this trial drug doesn't work, we will have this as a back up plan.  They will do all sorts of tests and research on MY tumor tissue, to know how it grows, why it grows....EVERYTHING!  The testing will take about three months and so will trial drug I am on. 

 

I'm still getting sick at least once a day, I have a nausea patch but doesn't seem to work 100%.  I have a hard time getting food down, but I still try.  Some days are easier than others.

 

 

That's about it for now,

Thanks for reading!!!

 

 

Tanya

FREEDOM WAFFLES...

HELLO!

I wanted to just post a quick post about the FREEDOM WAFFLE BREAKFAST we had put on July 4th. 

A BIG thanks goes out to all of you that helped make this possible!!

A special thanks to my big sister Ashley, and Carlie who came up with the idea and set the plan in motion! Also my big Brother Bannon for paying to get things rolling!! :)

I am so thankful for all the supporters I have. Without you fundraising wouldn't be possible, and neither would this fight. 

Thank you!! 

GROSS



Hello!!!

So I finally found some time to update.  :)

 

Where to begin...

I recently had yet another hospital stay. I went into the ER a few weeks back due to a fever and rapid heart rate. I had been experiencing some unexplainable chest pain.  I went in on a Friday and they assured me I was fine, and sent me home.  Saturday came around and I was back at the ER. Same symptoms this time with a fever.

After doing more tests and talking it over with my Oncologist they decided to admit me.

Oh great here we go again another hospital stay.  I can't tell you how much I dislike the

hospital!

I was at Gateway for 4-5 days.  They put me on antibiotics to treat me for the possible infection I might of had.  I was still experiencing chest pains.  They had me hooked up to ever possible machine they could think of.  After a few days into my stay they were getting ready to discharge me! YAY!!

When I got sick.  I was laying in bed and Grammy was there, I looked all around for a bed pan and couldn't find one...

I paged the nurse, she didn't come it seemed like a long time, when finally I asked Grammy to get the nurse, I was going to be sick.  About the time they got me a bed pan, was about the time I got sick!

To my surprise this is what came up...

GROSS!!!!

 

I looked up and said to the nurse "what is this?" When she and the CNA took a look and said "um...."

The nurse paged for a GI consult to come in ASAP.  A few short minutes later mom came in and was grossed out with the rest of us! Ha ha the GI physician came in and said she didn't know what it was, she hadn't seen anything like that before, but it appeared to be the "lining of something" is what she told me she thought it was.  GREAT!

So much for being discharged.  I was kept in a few more days.  To which they would run even more tests on me.  I had a swallow study done.  They found that food, pills etc. get stuck for about 10 seconds or longer in my throat before it's pushed down.  I am to watch what I eat and drink lots of fluid when I do eat.  They did an EGD as well and it only showed that my stomach was inflamed.  I was put on some antibiotics to help with the throat and stomach.  They decided this was the reason for throwing up that weird lining. 

I was finally discharged! I went home and went straight to bed.  Slept for a good 4 hours or so.

Over the next few days I got better and better...I had Chemo on the 28th, it was a Friday. 

I felt like junk, and I am just now starting to feel more like normal. 

 

Chemo this time around has kicked my ass.  The last time I did chemo I was nauseous, and felt crappy for a few days and then was normal for 2 weeks.  Not so lucky this time around. I feel OK the day after chemo, then it all sets in and I feel crappy, it makes me feel very run down and tired, weak.  My gag reflexes are heightened, so I gag over just about anything...which then makes me vomit.  I will be feeling great, then all of a sudden I am in the bathroom with my face in the toilet.  It just hits me all of a sudden.  It's weird and it sucks.

 

We left for Show Low on Wednesday July 3rd, for the Holiday weekend...I have to say I have enjoyed this trip so much.  Ashley and I weren't ready to head home when Sunday rolled around.  So we decided to stay longer.

We are still here! We are planning on being here all week.  Its beautiful up here, and the rain storms everyday are making it that much harder to leave. 

I think I just might become a snowbird! :)  You think I can get Scott to go for it?  I will stay on the mountain for the summer and phoenix for winter!

I can't tell you how much I have enjoyed being around all my family this past few weeks.  I just may never leave! :) I think they will all be OK with that! Ha ha

So for now, I am just enjoying this weather, loving the family time and just relaxing. 

 

I have some decisions to make regarding a clinical trail in Ohio.  I will have to be off chemo for at least 28 days before being excepted into the trial.  I would then fly to Ohio and spend a month there.  I just have to make some decisions as to if I am going or not.  I got some information on the trial from the physician running the trial, that makes me double guess on going.  I will keep you all posted if I go or not.  I will have a CT Scan here in the next few weeks to see if the chemo is working or not.  Please say your prayers it is! :)

 

I love you,

Tanya

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



A very real FIGHT...

UGH. . .F.R.U.S.T.R.A.T.I.O.N. . .

I am so frustrated today.  I woke up with the expectations of seeing my NEW Radiation Oncologist and getting my radiation "mapping" done so I can start radiation treatment.  I saw her yesterday for a consultation and was suppose to come back today for the mapping portion of the process.  That went out the door early this morning when Dr. Grade, this is pronounced GRA-DE...(The new Rad/Onc) called to tell me after talking my case over with Dr. Schulmbrecht (The new GYN/ONC) they decided based off the tumor size in my pelvis we are better to hold off on radiation for now.  To see if we can get a few rounds of chemotherapy in to shrink the tumors before radiation is done.

WHAT'S that mean?

NO RADIATION will be done right now...or until further notice.  The risk and complications are too great and out weigh the benefits.  Since I have had radiation before, there is very limited amounts of radiation I can get.  My bladder and rectum are already compromised, no need to compromise them further.  By holding off on radiation and pushing forward with chemotherapy the hopes are we will SHRINK the tumors not just in my pelvis but all over my body.  Treat the disease as a WHOLE, not just the disease in my pelvis.  Once the tumors SHRINK, we then can do radiation, but have a more precise treatment plan and radiate JUST the tumor and not my bladder and rectum. 

The RESULTS are IN...

I had blood work drawn today.  I haven't had blood drawn in about a week.  The last time I got my labs drawn my platelets were about 147.  I was worried they were steadily decreasing.  I FINALLY got the results and my platelets are holding steady at 150!!!! This is AWESOME news!!!  This is even up a little from last week! :)

OUR course of ACTION...

Since my platelets are NORMAL, we are going to start chemotherapy...AGAIN.  I will start this next Wednesday June 5th, 2013.  I am going to be doing a chemotherapy called CARBOPLATIN mixed with TAXOL.  This will be my first round and then after this we will check to see what happens with my platelets.  Carboplatin (carbo for short) takes about 3 hours to infuse.  Taxol will take about an hour.  I will have pre-meds that will take about an hour as well.  So over all it will be a full day infusion.  If my platelets hold steady, we will do another round.  If not we will work up a new plan. 

I am seeing yet another new doctor tomorrow.  Dr. Kludepplberg is a MED/ONC doctor.  He will take over my care for my blood disorder, the ITP. I see him tomorrow and we will go from there.

My appointment with him is at 1pm tomorrow.  I swear MD ANDERSON only does appointments at 1pm.  Every appointment I have had has been at 1pm.  I am not sure at this point if they have morning appointments. Ha ha I hope he will be able to get me off these damn steroids, but I guess I can't be TOO upset about it considering my platelets are holding at normal levels. 

I know I just changed care from Arizona Oncology to MD Anderson just last week, things are actually happening pretty quickly.  I just feel like it should be happening even quicker. 

I am FRUSTRATED. 

I feel like I keep getting pushed to the side, not that MD ANDERSON is pushing me to the side they are helping me, I just am frustrated. I want so badly for this cancer to be gone.  I am trying EVERYTHING...I called T-Gen and was told that since the consultations are usually the only thing that is covered by insurance NOT the actual treatment or trail that DR. BORST office didn't go further with processing the referral.  They also NEVER told me this either...so this whole time I have been waiting for them to get authorization!!  Now I am having to talk to Dr. Schulmbrecht and have his office process it.  Which upsets me.  It was about a week ago that Borst's office was suppose to process it and didn't...that puts us a week farther behind.

I am now having to prepare myself for chemo....................AGAIN. 

I am not sure how I did it the first time, and I am STILL not sure how to do it this time.  Even having been through this process before I am still not sure what to do or expect. Side effects for this treatment might be different than last time, however it's safe to say chemo is chemo.  These medications might effect my body differently than the last chemo drugs did.  My HAIR...I might lose my hair...AGAIN.  It's so irritating!

DO you know how hard it is to have to go through this ONE time, let alone TWO times. 

It's for the birds really.

Having cancer NEVER gets easier.  It's always SOMETHING. Like having cancer is ever EASY, but the drug induced ITP doesn't help my situation AT ALL.  This time around is more scary.  I have the ITP to worry about.  Before I was fighting the cancer that didn't really exist since my scans were all clear...this time around I have cancer in both my lungs, right adrenal and four tumors in my pelvis, it's a VERY REAL FIGHT.

You can see where my frustrations come into play.

 

I am spent for tonight.

My brain is FRIED and I can't even keep things straight.

 

Tomorrow is another day!

 



DIRTY LITTLE BITCH...

UPDATE...update...UPDATE y'all

I have a LOT to update you on.  I told you it was a week for the books.  Put your reading pants on and sit back and get comfortable. 

You wouldn't be here reading this if you weren't interested....right?

 

First things FIRST...

I got my lung biopsy results back, it was POSITIVE for metastatic disease.  This means the FUNK in my lungs IS in fact this BITCH.  Nothing else really is important other than this changes the game...A LOT. 

This dirty BITCH is fighting DIRTY.

I will fight DIRTIER.

 

Secondly, I saw Dr. Borst today.  My appointment was at 11:45am today and I got there at 11:38am and was waiting for labs before I was called back to see Borst himself.  I got my labs and was ushered to a room to wait for Borst.  UGH I am sure it didn't help I had a CHIP on my shoulder BEFORE even going in for my appointment.  Ashley, Mom and I were all sitting in the room with Kayla his MA when Ash got a text from Colleen (the babysitter) and she had read it to me.  The text wasn't ANYTHING bad, but just saying something along the lines of "they still made you wait, you think they would have learned their lesson after the last time when she walked out"

Kayla says "is there a problem with this appointment? I think we are doing pretty well" To which Ash responds "I was reading the text to her" as she points to me.  MA responds "I would appreciate it if you would hold your conversation about our office until after I leave the room, I am sitting RIGHT here" Ash says "that's fine we will talk about you after you leave the room".

First of all bitch don't even get me started, I will talk about WHATEVER I want to, if it weren't for ME, you wouldn't have a job!  That's OK...ONE more reason for me to SWITCH my care.

Borst finally comes in...

 (let me just remind you we had been in the office for over an hour by this time.)

To catch you up to speed, I was asked at Dr. Zaky's office on Monday to bring my SIMS CD to Borst so he could VIEW it.  Also since I went ahead and had my lung biopsy done WITHOUT his "approval" this appointment was SUPPOSE to be him giving me the APPROVAL and giving me clinical trial information. 

OK....back to him coming into the office. He for one DOESN'T even ask for the SIMS CD.  Which why would that surprise me?  Really, why I am still shocked?  He didn't even talk about my lung biopsy.  I didn't bring it up either.  Why would I?  I already had the biopsy, and I already got my results.  He did ask that I get a physical.  To which I said sorry pal I have had TWO this week and it's ONLY Thursday, NOT happening.  He didn't really know what to say after I said no.  Apparently not many patients say no?

He asked if I was able to get into BANNER MD ANDERSON...I said yes, they didn't really give me much more information than I already had.  He said he was sorry about that.  He suggested a clinical trial "T-Gen".  To learn more about T-Gen visit:: https://www.tgen.org/ He is going to see what he can do to get me in to see them.  I have already put a phone call into the folks at T-Gen to see if they take my insurance for one and two to see if they can tell me since I have ITP and have done IVIG if that will exclude me from the trial.  I am waiting a return phone call.  IF I can't get in to see them he is going to consult with Bibb and come up with a chemo treatment plan.  Which should be tricky for him considering I have ITP and no matter what chemo I get it will destroy the platelets even more.  I am in a STICKY situation here.

That sums up my appointment with him.  Can you tell it was a rather quick appointment.  I think from the time he walked in till he left was maybe a WHOPPING 10 minutes.  WASTE of my TIME, and GAS driving ACROSS town.  I knew this was going to happen. 

 

Let me talk to you about MY SITUATION...I have ACTIVE bitch in my body.  In my pelvis, lungs and right adrenal. This has been confirmed.  It's spreading like wild fire and nobody seems to be able to do anything about it. 

My first BOUT with treatment caused drug induced ITP.  Which means in short that I can't get chemotherapy due to the fact that my body is already ATTACKING itself and chemo could be fatal.  

I AM able to get radiation. HOWEVER, they can't radiate my ENTIRE body, and since I have at least 10 tumors in my body what gets RADIATION?  They want to focus radiation on just the pelvis.  I have four tumors there.  One in the adrenal and at least 5 in the lungs. 

BUT...they can't even tell me if the radiation will work.  Since I had radiation the last time, my "parts" are just about maxed out for radiation. My rectum can get up to 65 gray.  Which is the strength of radiation to this specific area.  Last radiation treatment I got 50 gray. 

That means I can only get 15 gray to the rectum before more SERIOUS side effects happen. Same goes for my bladder.  My bladder can get up to 75 gray and received 50 last time. 

Here's the TRICKY part...

Remember how I told you the tumors in my pelvic were putting pressure on my rectum and bladder but NOT invading those spaces?  Well this means no matter what she will have to radiation some portion of my rectum and bladder in order to radiate the whole tumor. 

LET'S PRAY SHE KNOWS WHAT SHE IS DOING!

No physicians are able to tell me if I can get IVIG and chemo the same time.  None of my physicians have ever treated a patient with chemo and IVIG at the same time. 

I have asked Dr. Borst, which just told me to ask Bibb.  Bibb says he hasn't done it before and doesn't know how it will work but will consult with Bosrt.  (that's clearly going to go far) I asked my new physician Dr. Schulmbrecht at BANNER MD ANDERSON, as he said the same thing...he has never done it before so he isn't sure.

 

SO WHAT DO WE DO NOW??

 

Like I said I saw BANNER MD ANDERSON.  I saw a Dr. Matthew Schulmbrecht.  He is YOUNG...which doesn't mean anything.  Like I've said before he comes HIGHLY recommended by a physician I know of at MD ANDERSON in HUSTON. Dr. Schulmbrecht has even studied small cell in the cervix before and has much knowledge about small cell.  I WILL be changing my care over to him.  I know I fought tooth and nail and HATED every thing about going to BANNER MD ANDERSON, but in the end I think giving my situation, given that fact that everyone else has given up on me this is where I need to be.  No matter how much I hate it.  I need to be with a physician that has experience in treating SMALL CELL. 

While I was seeing Dr. Schulmbrecht he did a physical and a total work up.  We spent some time with him going over my options.  He was totally honest with me.  I like that about him. NO beating around any bushes and NO sugar coating it.  My kinda physician. :)  He told me he felt I was positive for metastatic disease.  This was before I got my results back on my lungs.  Which every physician I have seen has told me this.  He said small cell is not curable.  BUT I can still live a long healthy life WITH small cell I just need to the right care. 

It's aggressive.  NO SHIT. 

He is going to present my case to the tumor board tomorrow (FRIDAY). 

The tumor board is a board of Oncologist that meet every Friday to review cases that are UNIQUE, and RARE.  The whole team then comes up with a plan or course of action that would best benefit the patient.  He will call me tomorrow and let me know what the plan is.

He is also going to see if since I have my SIMS CD that I can get that in the hands of his Radiation Oncologist and see if she can make a plan for me based of the SIMS CD Zaky did. 

I might be able to get started with radiation with BANNER MD ANDERSON without having to do my SIMS all over again.  Say your prayers this happens as it will save us WEEKS!!! If for some reason she can't, then I will have to schedule a consult with her, then redo the mapping and then she will have to come up with a plan of treatment and that could take WEEKS, weeks I am not willing to WASTE. 

In the mean time, I have a follow up appointment tomorrow with Dr. Bohan, she is my lung doctor. She is going to give me the results I already have on my lung biopsy.  I think I will be cancelling this appointment.  I kept it on since no physician has actually GIVEN me my results, but since Borst called me with this tonight I will cancel that appointment.

That's at 10am tomorrow.  We cancelled the appointment we had at noon with the alternative treatment center in Scottsdale, they don't take insurance and my day tomorrow is going to be by far the most hectic.  I don't have time for non insurance taking offices. Nor the money.

I see the Cyber-Knife Radiation office at 2pm and they DO take my insurance! Ha! When I talked to Dr. Schulmbrecht I asked him about this type of radiation and he said it sounds cool, but really the radiation machines they have at BANNER MD ANDERSON are just as precise.  He suggested I go and talk to them and get a second opinion on radiation, what can it hurt?? 

Like I had just mentioned Borst called me tonight with my lung biopsy results. 

He said Bibb wants to see me tomorrow.  So that will be added on to my day SOMETIME tomorrow...not sure when...but he will FIT me in.  He wants to try putting me on something called Rituxan.  This is suppose to help with my platelets...?  We will see.  My platelets were 177, remember that day?  I was so excited they were 177.  Well every time I get labs, my platelets are going down, down, and down.  Last Friday 177, Tuesday this week 157 and today 147.  They are steadily decreasing. THIS ISN'T A GOOD SIGN.  Means the ITP is working over time, and the IVIG will be needed more often, and finally if in a weeks time my body can destroy 30,000 platelets what is it capable of doing with CHEMO in my system?  SCARY thought!

I will meet with Bibb tomorrow and see what he has come up with. Say your prayers he has COME UP WITH SOMETHING!

To top it all off I have to take Sophia back in for her post op surgery appointment.  That's at 440pm tomorrow.  I am GLAD Monday is a HOLIDAY and everyone is CLOSED! Ha ha I NEED the weekend to recover from the week!

I am scheduled for Tuesday to start radiation with Zaky.  I will keep that appointment until I speak with Schulmbrecht and see what he can do for me.  I pray he can do something for me!

I called Rubin's office today and let them know my lung results.  His office is what a doctors office SHOULD be.  I told Andrea (one of his office girls) what my results were and that I needed to be seen.  She told me his first available was 6/7/13 @ 930am.  I took it of course. 

However, she told me I will give him the message and if we have to move some other patients around to get you in sooner we can.  Rubin was out of the office today so she will talk it over with him tomorrow and call me with a new appointment time, she knew he would want me in sooner. PLUS they are NEVER behind schedule! :) I know Rubin will be the one to cure me of this bitch. 

 

Here's do moving mountains!

Tanya

NEGATIVE...Ghostrider!

My BMBX results are IN!!!

...and were NEGATIVE!! Which means no bone cancer for this girl!!! :) 

So truly I have ITP, drug induced. So the next steps are to keep my platelets in normal ranges so I can get treatment. :) That will be done by IVIG and steroids. 

Should have my lung biopsy results back this week and I have HIGH hopes they will be NEGATIVE too!! :) 

Tanya 

....a week for the BOOKS...

HELLO...

Its that time again, time for blogging! :)

Today (05.20.13) I had an appointment with Dr. Zaky. 

If you remember her from way back in September-November, she was my radiation oncologist.  Which means she is my radiation doctor.  I haven't seen here since March 6th. 

A LOT has happened and a LOT has changed since I last saw her. 

My appointment today was at 8am. 

We (Scott, Mom, Ashley, Grammy and myself) met with Dr. Zaky.  We talked about radiation and really just had a consultation type appointment. Got all our questions answered.   

My "team" of doctors all have suggested I get radiation done to my pelvis...AGAIN. As I have active tumor in this area.  My scans all came back showing tumor present in the "vaginal cuff" area. 

I had scans done in Chicago when I was up there and it showed tumor but we didn't get a copy of the CD so we weren't sure what we were looking at and just going off the CT report. 

After we all met with Dr. Zaky, we did what they call is SIMS testing. 
Let me explain to you what SIMS testing is...SIMS testing is when they put you in a CT machine, and gives you small bowl contrast to drink.  They get you in a uncomfortable position on the table and send you through a series of scans.  Once this is done, the scans show a few things. 
1) IF there is tumor present
2)WHERE the tumor is
3) HOW big the tumor is
4) WHAT organs/structures are effected
After my scans were all done, we met with Dr. Zaky again and we LOOKED at the scans. 
This is what we saw...ONE: there is active tumor in my pelvis.  Which we knew.  BUT, there is about 4 tumors in this small area that all seem to be connected to each other.  TWO: we saw specifically WHERE the tumor is.  Which is in the space between my vagina, rectum and bladder.  This is just "empty space" since all my lady parts have been removed.  Currently the tumors are growing INTO my vagina.  Putting pressure on my bladder AND rectum, BUT not invading those spaces.  Which is the best news we could ask for given the current situation. 
The tumor when I was last seen in March was about 1.5cm.  It is now grown and is taking up about 1/3rd of my vaginal space.  Which is the BAD news.  Since the tumor has developed into tumors, and have grown from 1.5cm to the mass it is now radiation will be very tricky.  We will have much more tissue to radiate for one, and two that means side effects are higher and three my bladder and rectum are now effected by MORE radiation. 
GOOD news is the tumors ARE NOT invading the bladder or rectum.  They are just putting pressure on those areas.  The reason this is good news is we can do radiation to stop the growth into those areas, even possibly SHRINK the tumors.  If the tumor continues to grow and invades either of these spaces, then we are looking at high risk for infections.  What COULD happen is the tumor can build a "tunnel" of sorts from the bladder and or rectum or both and eventually causing my bladder, rectum or both to send urine, or stool down this tunnel and out the vagina.  Which causes infections, and the qualify of life for the patient is then decreased. 
Surgery sometimes doesn't always work to correct this.  We do NOT want this to happen.
So the sooner we get radiation going the better. 
As of right now I am scheduled to start radiation on Tuesday March 28th, 2013 at 1pm.  I don't know yet, how long each treatment will be, or even how long treatment will last.  Once my treatment plan is made (which will be this week) I will have the answers to those questions. 
I am going to see another radiation oncologist on Friday.  This radiation oncologist does "cyber-knife radiation" which is still radiation, but it is more pin pointed and precise.  Which might decrease the effects of radiation on my bladder or rectum.  Which is what we want...we just don't know if this type of radiation will benefit MY type of cancer.  Still worth the trip to Scottsdale to find out.

I have my LUNG BIOPSY scheduled for tomorrow at Banner Desert at 8:30am.  I had blood work done today and my orders, and authorizations are all in and I'm ready to go! :) 
I check in at 8:30am and my procedure is at 10:30am.  I will have results back on what is going on in my lungs in about 7 days from tomorrow. 
Then we will know just how dirty this cancer is playing. 

Wednesday I have an appointment with BANNER MD ANDERSON.  This is my consultation and I will be meeting with Dr. Matthew Schlumbrecht, MD.  He comes HIGHLY recommended by Dr. F from MD ANDERSON in HUSTON.  I have been in correspondence with Dr. F for a few weeks now.  I was going to make the trip to HUSTON to see Dr. F, as he sees many of my sisters (SCCC/LCCC Sisters) but once I talked to him he suggested I seek treatment here in Arizona and that I see DR. SCHLUMBRECHT.  Since Dr. Borst is sending me to BANNER MD ANDERSON anyways I will see who comes highly recommended.  I hope he can shed some light on the current situation and help us out with our course of action.  Even better if he is here in Arizona. STILL NOT HAPPY that I am going to BANNER MD ANDERSON. 

Thursday I will see Dr. Borst at 11:45am.  This should be an interesting appointment to say the least.  I have a few choice words for this physician and I am irritated with this office.  So Thursday will be fun for me.  Ha ha! :) This is when he is suppose to let me know if I can have the lung biopsy done or not and give me more information about clinical trials.  Which is why he is sending me to BANNER MD ANDERSON.  So the whole reason he wants me to come to his office will already be taken care of BEFORE I even make it to see him for him to tell me to do all this.  WHATEVER...

Friday...Oh Friday.  I will see the Cyber-Knife Radiation Oncologists.  This appointment is at 2pm.  Scott has me scheduled to see some other alternative treatment center at noon this day.  Its a week for appointments! Grammy says "how do you keep it all straight" I have two calendars and I coordinate them both one on my phone (I always have it one me) and my daily planner at home (for when I am at home).  Mom made the comment today "you have made more phone calls today in one day than I make all year" haha story of my life...If I don't stay on top of my medical care then who else will?

I will keep you all posted on what comes of these appointments, so look forward to more blogging this week or next! :) Things are happening, and moving along...it ONLY took 3 months to light fires under some asses...but I hope we are well on our way to a cure! :)

Tanya
 



FEELING POWERFUL...

HELLO one and ALL!!! :)

I know it's been awhile since I last posted...to that I am sorry, but not! ha ha

I have been living life and a busy one at that.  It's been full of the usual doctor appointments and labs and Vitamin C infusions and Biopsies and the list goes on. 

 

Today (05.17.13) I had my follow up with Dr. Bibb.  I can't tell you how much I love this doctor.  I could only wish he was a gyn/onc!!!  He is my med/onc (blood doctor) and he is just fantastic.  You know you have a good doctor when he walks into the room high fiving you (for your platelet count) and giving out free hugs! :)  It never fails when I see him he gives me at least two hugs before he is off and hugging the next patient.  I had labs drawn today at his office to see my WBC is 8.6! That's NORMAL!!! WHOOP WHOOP!!! My platelets are 177, that's ABOVE NORMAL!!!! Can you believe it?  177!!!  It seems the IVIG and the steroids have WORKED!!! You read right, the IVIG and steroids are WORKING!!!

He has confirmed in fact I do have ITP. We were waiting on the BMBX biopsy before we could confirm it to be true.  We have been decreasing my steroids for the past few weeks.  He has lowered them again to 20mg. I will start that decrease tomorrow.  I will more than likely be kept on steroids at 20mg for awhile, to see if my platelets will still hold strong at normal levels.  I will need to do maintenance IVIG to keep at normal levels.  This DOESN'T make me happy, but whatever.  He has suggested I go forward with the lung biopsy.  I didn't want to do this after seeing the CTCA physicians.  Since my platelets are 177 (I still can't get over this) now is the time to do any biopsy.  As he explained it to me, since nobody has done a biopsy we still don't know what is going on in my lungs.  As the CTCA physicians tell me based on the SIZE of the nodules in my lungs it is metastatic disease. 

HOWEVER, Dr. Bibb has valid points.  He says if they don't have a pathology stating metastatic disease, they can't prove anything.  With my platelets being so FUNKY and NEVER doing what we WANT them to do, why would I start chemo to treat my whole body when the cancer might not be everywhere.  My body is destroying the platelets, why give me chemo to destroy more platelets if the cancer hasn't metastasized?  He was going to speak with Dr. Borst and get things in place for a lung bx early next week. 

WELL...as most of you know how I can be I took it into my own hands and I called my pulmologist and let her know the situation.  She confirmed to go forward with the lung bx and even submitted a new order, and my recent labs.  I was speaking with Michele Dr. Borst's PA and she tells me "there are many steps that need to be taken before we can just order the lung bx.  I need to talk to Dr. Borst and he needs to approve it and then we have to call your pulmologist and get her to order it, then it has to be approved by insurance, you will need to then get interventional radiology to approve it and then hospital will need to schedule it and then they will call you" I let her know I already talked to my pulmologist and she approved it and sent in new orders with recent labs, I already had an authorization on file with my insurance and I had already put in a call to the hospital to get it scheduled but their computers were down.  So I will schedule it ASAP when the computers are back up.  She responded with "I will still need to talk to the boss man" meaning Borst.  I said "OK whatever" and hung up.  If I have an order on file and my pulmologist is approving me to have it done, then no matter what "the boss man" says I am having the lung bx done!!!  Well she calls me back a few minutes later and says "I talked to Borst and he said he would like you to come in on Monday at 1130am so I can do an exam and then we can get things moving for the lung bx."  I asked her why I needed to come in for a vaginal exam when we are talking about a LUNG bx...my vagina isn't going to tell her anything about my lungs" she got really quiet and said "he just wanted you to come in for an exam" I said "it's not necessary and I have too many appointments already on Monday"

PLUS I have an appointment scheduled already WITH BORST HIMSELF for Thursday.  So she said to keep it on Thursday but they can't order anything until I see him.  Well since he isn't ORDERING anything and my pulmologist is...I will schedule the lung bx for Tuesday! :) I know how to get around this little system she seems to THINK she has. 

So I have taken my care and put it back in the proper hands...MINE!

I have been feeling so out of control of my own life and medical decisions lately it's not even funny.  These little decisions made me feel so POWERFUL.  I know it seems small to most of you, but for me it's huge!  I can't remember when the last time I felt IN CONTROL of ANYTHING...actually yes I do that was LAST APRIL, before I was diagnosed.  Back when life was NORMAL, when my life didn't consist of doctors appointments, labs, vitamin c infusions, and biopsies! Back when my biggest concern was if I was going to eat PIZZA for dinner or a CHEESEBURGER! It's so frustrating and I have talked to SO many of my SCCC/LCCC sisters and that's the main COMPLAINT every one of us has...feeling out of control and FRUSTRATED. 

Between Scott and I we have researched every possible solution.  I have doctors looking at my medical records in MEXICO, BEVERLY HILLS and even HUSTON.  I am now being sent AGAINST MY WILL and by Borst to BANNER MD ANDERSON.  It seems he doesn't know what to do with me.  He thinks BANNER MD ANDERSON can help me.  I am not happy with this decision as I have been fighting against going to BANNER MD ANDERSON since the day I was diagnosed.  I haven't heard ANYTHING good about them, and this is MY LIFE we are talking about, not something I am willing to just put in any ones hands.  I HATE so much that this is where I am being sent.  I HATE that NOBODY can figure ME out.  I remember when I was first diagnosed my PCP at the time told me "you are going to end up being a clinical trial"

Here I am being sent to clinical trials cuz they "just don't know" that's BULLSHIT! Since I am being sent to MD Anderson, I took it upon myself to find out the best doctor to see...I contacted a specialist in Huston at MD ANDERSON and he gave the the best point of contact here in Arizona.  I have already set in motion actions at BANNER MD ANDERSON.

I have been reading books and doing my research and I have changed my eating habits and my lifestyle and I take supplements three times a day and I am DOING all the stuff a "cancer patient" should do and you are telling me "we just don't know"! My med/onc today tells me "if it has metastasized to the lungs we are in a whole new game of baseball here, we are talking INCURABLE" To which I told him "INCURABLE" isn't even a word in my vocabulary.  I am sorry but I don't know what that means.  I WILL be cured one way or the other no matter if it has metastasized to my lungs or not.  If you can't figure it out I will find someone that can.  I would appreciate it if you didn't use words like "INCURABLE".  That was the end of that.

So I left there today feeling pretty empowered.  It's a feeling I would like to hold on to for as long as possible.  I am just afraid with this diagnosis those feelings don't last long typically.  I know the feeling of being lost and confused will set in sooner than I would like.  It's just a day in the life of cancer diagnosis. 

So for now I am holding on, fighting and staying as positive as I can.  I am treading water and I think barley keeping my head above water, but the good news is...I am still treading water and my head is STILL above water.  :) 

 

Tanya 

SUPERHERO THURSDAY...

It's SUPERHERO THURSDAY here in Arizona. I am not sure if I qualify as a real "SUPERHERO" but I sure do feel like one today...I am being pulled in so many directions I don't know which way is up. 

I returned from CTCA and THOUGHT I had all my questions answered and a plan in place for moving forward with my treatment.  HOWEVER, as it turns out that doesn't seem to be the case. 

As I was in the infusion center at Arizona Oncology this week getting my IVIG, Michele Dr. Borst's PA approaches me and wanted to know how things went in Chicago. 

(We have been texting back and forth since I got home.)

I let her know last Thursday 05.02.13 what the treatment plan was and that Dr. Williams from CTCA would be calling either her or Dr. Borst to touch base. 

After seeing her on Tuesday and they still hadn't touched base, I was beginning to wonder if this "co-management health care" was for me.  I called CTCA to get my records faxed to Michele so they would have them for my appointment TODAY.  Well after many phone calls and long hold times, the records were finally sent and received late last night.  Dr. Williams FINALLY called Borst.  This was also after Michele called and left THREE message for Dr. Williams, and I called twice.  So things were moving along........OR SO I THOUGHT!! :(

I had an appointment with Dr. Borst today at 12:30pm.  I show up and sign in, only to sit in the waiting room for half an hour.  I finally get called back to a room, to only have to wait an addition HALF HOUR.  I was also scheduled to see Dr. Rubin my Naturopath at 2:30pm in Scottsdale.  I told Scott "let's go, we are leaving".  As we are on our way out of the office his MA comes chasing after me and says "are you leaving?" I look at her with this dumb look on my face and say "UH YES, I have an appointment at 2:30pm in Scottsdale I can't wait here all day." She looks at me and says "well Dr. Borst is ready to see you now."  I said "Well he will have to call me to reschedule, I can't wait around all day I don't have time to see him now."  She was all huffy and says "ooookkkkaaayy" and walks off.  Scott was so worried they would be mad at me. My response: I DON'T GIVE A SHIT IF THEY ARE MAD...I AM MAD!!!  My time is just a precious as HIS!!!

So I left and made it ON-TIME to see Dr. Rubin.  I JUST ABSOLUTELY LOVE DR. RUBIN...and I can't thank Marsha Larson enough for referring me to him.  I'll get into that in a minute...

 

I don't know and probably won't know what the plan is with Dr. Borst and his crew, but for right now I am so close to firing them it's not even funny.  The doctor is ONLY as good as his office staff and right now his office staff SUCKS A BIG FAT ONE! While I was in the infusion center on Tuesday talking to Michele we were briefly talking about CTCA and the plan.  I let her know that they wanted to put me on an oral chemo called Temodar.  She got this dirty look on her face and says "why would they do that, you don't have a brain tumor and that's what that medication is for" I said "They have used it before with small cell and small cell is small cell no matter where it's at in the body and this medication and reacted to it well" she just kept batting down all my answers.  I was getting frustrated and annoyed.  So now at this point I am not sure what to do. Who to listen to or where to go from here.  I was suppose to get all my questions answered TODAY when I saw Borst, but since that didn't happen I left feeling hopeless. 

I headed to see Dr. Rubin and not really feeling it...and frankly dreading going to see him.  This is the first appointment I have had with Dr. Rubin without Scott with me and I think I had some nervousness over that too.  Well I got to Dr. Rubin's office and they are just so friendly and personable and just AWESOME.  I meet with Rubin and first thing he says is "HOW WAS CTCA? TELL ME ALL ABOUT IT!!!" I tell him all about it and my labs, scans, the progression of my disease, what just happened at Borst's office and how frustrated I am and I don't know who to believe and what to do.  I was feeling hopeless.  He right away made me feel better.  He said "CTCA is a RESEARCH FACILITY for one, which means they have used this oral chemo on patients with small cell and have positive results.  They aren't just giving the old tired chemo to all the patients that aren't working in the first place.  So yes of course your Oncology team here is going to react this way, their research doesn't show Temador to work for small cell but for brain tumors, but they also haven't tried it either." I told him Michele said it would totally wipe out my platelets (what I have left) it would be too hard on my system.  He says "well they are giving it to you in a low dose, so it might and it might not." Rubin seems to think the Temador is the right way to go, once my platelets are under control.  He thinks CTCA is the place I need to be and will support me in any decision I make.  Rubin said also that he has heard a lot about Temador and it working with small cell...He added another supplement to my daily regimen. Which is another supplement to slow if not STOP the spread of the disease.  We now have labs indicating my cancer markers and he believes that now that we know what my markers are, we can start changing the my levels with supplements to cure me of this nasty disease.  I will add a powder substance to my daily routine twice a day in hopes this helps to slow the growth and eventually stop and kill the cancer.  Dr. Rubin is an amazing doctor.  He gives me the HOPE and STRENGTH to keep fighting, that's what I had lost today at Dr. Borst's office. 

This I believe is what a doctor, an ONCOLOGY doctor should do for you...Give you HOPE! 

After talking to Dr. Rubin, and hearing him out I think I have decided to go with the treatment plan CTCA has come up with.  Once I get my platelets on board and find out what's going on with them, I will start the Temador.  Dr. Rubin said he has many patients on this medication and they do very well, hardly any side effects. 

 

I have my bone marrow biopsy tomorrow and will have the results for that in about 7-10 days....here goes the waiting game again.  I hate this part.  Dr. Rubin doesn't seem to think they will come up with anything with the BMBX, nor do I and nor does Dr. Bibb...but we have to rule it out.  I am having my BMBX tomorrow at Banner Desert.  I will check in at 8am and it should only take like 30 minutes.  Ashley is off tomorrow to be my taxi driver! haha Thanks again Ash! :) Maybe I can treat you to lunch to thank you for all your help! Be thinking of a good healthy yummy place to eat!

 

My IVIG went pretty ok this week.  It was a long week.  Long days and a LOT of fluid.  One of the side effects of the IVIG is headache, I have had one for two days...what a joy this has been.  I hate headaches.  My platelets on Tuesday were 33, they were 111 last week.  I had them drawn again on Wednesday and they were 61.  They are at least going up, just not as fast as I would like to see them recover.  I will have them drawn again tomorrow before the biopsy.  IVIG comes in 10 gram bottles that is about 200 ml, I had to be infused with 8 bottles each day.  Well since scheduling screwed up and put me on for 10am and we didn't start infusion until 11am, I had 6 bottle on Tuesday and 10 bottles on Wednesday. 

 I was feeling fine for the most part no serious side effects.  Just the headache, extra full feeling.  I felt water logged.  Its a miserable feeling.  I am glad it's over.  I hope I don't have to do this IVIG again.  8 hours each day sitting getting infused is just too much for one person to handle.  I have high hopes that after that BMBX is over and we get the results back on that and I am finally cleared of any type of BONE CANCER, (which could be causing the low platelet count) I will then be put on a medication for my platelet's and the ITP to keep my levels at and in normal ranges.  Which will then allow me to start the Temador oral chemo. I can't tell you how ready I am to get on this oral medication and start kicking cancer ass again.  I am so sick and tired of not having anything done and then to get scans and see the dang cancer has metastasized to yet another part of my body.  It's frustrating and so irritating.  I am doing everything I can on my end to keep this from happening and yet another scan shows it's in a new area.  Then to have Dr. Borst's office tell me this isn't a good plan, well it's a PLAN, and it's at least SOMETHING!!  Whereas they aren't doing anything, I had my last chemo on January 4th, 2013.  I had a physical and follow up 6 weeks later with Dr. Borst and was "clear".  Only to have a chest xray done in February and show mets in my lungs.  So they have known since February that I have possible mets, and yet here it is MAY and we are still sitting on our asses doing nothing.  I have had it! I have called several different treatment facilities throughout Arizona, California and even Mexico.  I am getting my PET SCANS and PATHOLOGY reports into the hands of many well known physicians.  That will review my records and tell me if I am a patient they can help.  All three of these physicians have many years of experience in either neruoendocrine cancers, or small cell cancers.  I however am not looking forward to having to travel and go outside of my home state to get treatment, but I have to do what I have to do to save my life.  The best part about this is, once they physicians receive my records it's just a matter of them reviewing them and telling me "yes I can treat you, or no I can't".  If they CAN treat me I will then set up a consultation appointment and go from there. If they can't we are back to the drawing board.  I don't think at this point in my treatment that any more opinions are going to hurt.  SOMEONE out there has to know about small cell and SOMEONE has to be able to figure out my disease and TREAT ME! I just know it!

 :)

Still FIGHTING,

Tanya