STEROIDS...AND MORE

I am a bit of a space Cadette! I was suppose to call last Friday (03.22.13) to Dr. Bibb's office for the results on my mass amounts of blood work.  I have had a lot going on, and just plain forgot. If I don't write it down I won't remember.  I now know what Scott goes through every day. (ha ha) So I finally called them about 530pm on Friday, but the office was already closed.  I remember on Monday with the help of Ashley! Ha ha and I got the results FINALLY!!

I was told all my results look negative and within normal levels.  (For what they tested for that is) So that is great news.  The only test that wasn't back yet was I think for the Leukemia.  That will hopefully be back soon. Then I can really rest at ease. So the next step is to put me on Steroids.  I started those yesterday.  I am on Dexamethazone.  10 pills a day for 5 days.  I will go back in on Monday and do more blood work.  These more than likely will not tell us what is going on, but the blood work the following week will for sure.  These steroids can make me moody (lucky Scott) however I have not experienced this...yet! Ha ha

So that's were we are right now.  Pray the Steroids SMACK my platelets out of it and they start functioning like normal! Then once that happens we can go forward with the next steps. :)

So that's that...

For those of you reading this I know you are my strongest supporters. So I have a big favor to ask of you! I am doing my very first Relay for Life on May 4th, 2013.  The event will start at 6:00PM on Saturday and will be an all night event ending at 530AM on Sunday.  I know it is hard for some of you to commit to 12 hour even on a weekend no less.  I however encourage you to take a step back and think about all those cancer patients that can't just decide not to fight.  This is 12 hours out of your busy lives to help make a difference.  Yes it is a 12 hour event, HOWEVER!  The more team members we have the better off we are! It is a RELAY, so for those runners out there that means you only have to walk as long as you can and when you can't go any longer you tag a team member in to replace you.  It will be a lot of fun.  We will camp at the field, we will decorate out camp, and they will have much going on this day as far as events, including a luminaries ceremony.  This will for sure be an memorable event and an emotional on at that.  I encourage you all to take a step back and just help to make a difference.  If you can't commit to the full 12 hours, I ask that you at least make a small donation on my teams behalf.  Think about it! :) Every little bit helps.

Thanks,

Tanya

CANCER IS A BITCH...

This is putting it nicely.

 

I got a devastating phone call last Friday. (03.15.13) It was Michele from Dr. Borst's office.

The pathology from the biopsy that was taken on Monday of last week in the pelvic region 03.11.13) showed the cancer has returned to the vaginal cuff.  For those of you who are unfamiliar with what this means, it means the area where they took my cervix and all that jazz the cancer is back in this same area.  I was told if the cancer comes back, it will more than likely come back in this area, or metastasize to the lungs or brain. 

 

Here is the kicker...The spots they see on my lungs...well they aren't sure what they are still, but are about 95% positive my cancer has also metastasized to the lungs and that these spots are cancer.  So not only has my cancer come back in the same area, but it has spread to the lungs (both lungs) too.

 

What a bitch this cancer is!!!

 

So I went in today as most of you know to see a doctor about my platelets being so low for so long.  This doctor would be Dr. John Bibb.  He is a Medical Oncologist in Dr. Borst's same office and knows a lot, I mean A LOT about blood! So I had my normal weekly blood drawn today and any guesses on what my platelets were???  34.0, that is up from the 26.0 last Thursday.  Some good news on my levels was my WBC is 4.0!  That's NORMAL, for a healthy person! Great news for me!!! Every week it keeps going up and up...3.0, 3.3 and 4.0 today!! So Dr. Bibb is stumped.  I have managed to stump yet another doctor.  Looking over my labs, he was sure I had to be taking some OTC medication or herb or SOMETHING that was the reason for the platelets to be so low for this long.  After doing a history and physical on me he was still asking questions.  He even took a phone call in the middle of his consultation to talk to the radiologist that read my PET Scan a few weeks back to see if he noticed anything on my PET as far as my bones.  He didn't.  So that's good news.  What he thinks might be happening is the chemo that was helping fight the cancer off damages not only bad cells but good cells too.  So possibly what could be happening, while I was on chemo (which is common but not common if that makes sense) it depressed my cells to the point where now my antibodies are attacking my platelets.  This is called Idiopathic Thrombocytopenic Purpura also know as ITP.  Which means just that, my body is sending my antibodies to attack my platelets as if they were a foreign body or infection.  Which could be the cause of the low platelet counts. 

 

First steps in figuring out my puzzle::

 

1)Blood work...and lots of it! I had that all done today.

2) Steroids.

3) Platelet transfusion

4)Possible Bone Marrow Biopsy

 

Step 1...So the blood work that was drawn today, the first set was just to see what my CBC was.  Which gave us the platelet count.  The second batch of blood (there was like 7 tubes the second time around) will be sent off to test for any bone cancers such as leukemia.  Dr. Bibb was sure of himself these tests would come back negative, but we have to rule them out before moving on to step two.

Step 2...I will call on Friday, the blood work will be back by then and I will find out what my levels are, and if anything shows positive for bone cancer.  If all is negative, then I will be put on Steroids for about 4 days.  These can make me moody and irritable, I am sure Scott won't notice a bit of difference!!! hahahahaha :) After the steroids are done, I will have a bunch more blood work done.  Once that is back we will know if the steroids were able to get my platelets up and keep the them up. If they are up and stay up, this means I do NOT have ITP.  Just means my platelets needed some help rebounding from chemo.  If step 2 fails...If the steroids don't work they I will do step 3.  I will have  platelet transfusion.  If I get 1 unit of platelets say today, and I get labs drawn in 2 days from now then and I have ITP my platelets will be destroyed in those two days and will be back to the 20-30's range.  A normal person would get platelets and two days after the infusion it would show off the chart numbers 140-150's.  Depending on that will depend if I have to have a bone marrow biopsy.  They do these in the office or at the hospital.  A bone marrow biopsy will tell us exactly what is going on with the bone marrow and why its not able to produce platelets, or what is happening to the platelets once they are mature.

 

In the mean time, I have an MRI of the pelvis scheduled for tomorrow at Banner Desert at 330pm.  This is going to hopefully give us more information on the size of the tumor in my pelvis.  In hopes it is small enough we can do internal radiation to kick this tumors ass.  Dr. Zaky my radiation oncologist is already getting her plan together, we just need my platelets to be at least 100 before I can be treated. As for what is going on in my lungs we will just treat this as though it is cancer that has metastasized and will get chemo again, but will need my platelets up to 100 as well in order to safely treat me.  I see a Natropathic specialist on 04.01.13 in hopes to give me more treatment options than the normal run of the mill chemo/radiation combination. 

 

Scott and I have changed our life style to raw.  We eat a lot of fruit, veggies, nuts, chicken and fish.  Its really been a great change of pace.  I notice I have a lot of energy and sleep much better at night.  I recommend it to everyone. Cutting the sugar wasn't hard until I had a dream I made a whole package of cinnamon rolls and ate all of them!!! :)  Scott says it's my ego trying to get the best of me.  I will not give in, not even after I craved cinnamon rolls all day! :) I filled up on apples and such instead! :)

 

I had a plan to surprise my coworkers tomorrow.  I was suppose to be going back to work starting tomorrow for 2 days a week 8 hours each day.  I was cleared with OCC Health, and got my doctors note and everything...only to get the news last Friday that my cancer has returned.  My supervisor and I both decided I would postpone coming back to work until we had a full treatment plan in place going forward. So I won't be back to work anytime soon, at least not within the next few weeks.  I was really looking forward to returning to work.  It will happen soon enough.

 

I do believe that is all for now...

I know it's a lot, but thanks for sticking it out and reading to the end...cancer is a bitch, but I will gladly show her whose boss! :)

 

Until next time

 

Tanya

 

TO BIOPSY OR TO WAIT...

TODAY...oh man today...

 

I was scheduled today (03.14.13) for a Lung Biopsy.  I should have known it was going to be a crazy day from the start of it.  I got to Banner Desert at 8am this morning and waited around for about an hour and a half before anyone even came to bring me back.  Which pissed me off.  The tone of the front office girl just made it that much worse.  After getting snippy with "Rose" in medical imaging, yes I am calling her out!!  I finally got called back. 

 

The biopsy was scheduled for 1030am, and they needed to get my blood drawn and see what my platelet count was before they did the biopsy.  WELL...yesterday I was told that my platelets were to be at 50 or higher, or I would need a blood transfusion.  Clearly my platelets were not going to be this high, as they haven't been in the 50's or higher in about two months.  So I knew I was going to need the transfusion first.  I called my pulmology office and let them know what was going on.  They said they would take care of it. 

 

My counts are back and they are a whopping 26!  26!!!!!  Need I remind you 140 is normal.  I am starting to think my platelets have a mind of their own and they know when I am about to have a procedure done so they act up.  The last time my counts were this low was January when I was inpatient.  So of course they had an order on file for a transfusion (if need be).  However, the order was only for one unit of blood.  Of course I am going to need more than one unit with my counts at 26.  So the radiologist calls my pulm office only to discover Dr. Bohan is out of the office and has been out of the office all week.  Hmmm...so where did this one unit of blood order come from?  Dr. Maden (the radiologist) spoke to Dr. Bohan's partner (Dr. Slobig).  Are you still with me?? haha he says he has no idea where the order came from.  For one, Dr. Bohan is out of the office and the orders apparently were signed by her, But nothing is documented in my chart.  Dr. Slobig at this point is too concerned about what is going on in his own office and doesn't feel comfortable ordering blood for me since A) I am not his patient and B) Nothing is noted in my chart.  I am at this point in a texting war with Michele from Dr. Borst's office letting her know what is going on.  She tells me to have the radiologist call her.  So finally they tell me (by this time it is 1230pm and I am irritated and starving) that they have decided to hold off on the lung biopsy at this point.  The risk with going forward with the procedure is too high.  The nodules are small...about the size of half a grape.  Apparently this is small?  Seems big to me...hmm.  So if they were to go forward with the procedure, I could A) bleed out and die (nice scare tactic) and B) It could collapse my lung.  OK LET'S WAIT!!!

 

So where do we go from here???

 

Per the radiologist, he said infection and cancer look a lot alike on a scan.  So based off the scans it is really hard to tell if it's cancer or infection.  So I have one of two choices...

1) We wait and see if the nodules get bigger or smaller. 

If they get smaller that means it is infection.  If they get bigger it means something bad or cancer.  Let's pray for infection!

2) I can wait until my platelet count is up a little higher, schedule a transfusion and the biopsy the same day and see if they can get a tissue sample to find out what it is.

 

I will call Michele tomorrow and get an appointment next week with a Med/Onc and to see Dr. Borst.  I will also get an appointment with Dr. Bohan for next week as well and see where we go from here.

 

So basically I spent 4.5 hours sitting at the hospital listening the the 20 something cry baby in the bed next to me about her 30 issues and the 1000 medications she was on.  Can you tell I am irritated?

 

Oh well...so the day ended spending a few hours with two of my favorite people...Beefy and Bean.  Those two can brighten any one's day! :)

 

Until next time...

Tanya

PULMOLOGY...

On Friday March 8th, 2013

I had my Pulmology appointment with Dr. Bohan.  She is FANTASTIC! I just loved meeting with her and I can't thank Dr. Rodarte enough getting me in to see her and so quickly. 

I got to spend about 45 minutes with Dr. Bohan.  We went over my medical history, after filling her in on my life the last 6 months (can you believe it's been 6 months since diagnosis??). 

 

She told me that it could be one of three things effecting my lungs. 

1) Infection

2) Valley Fever (which is considered a fungus...YUCK)

3) My cancer has metastasized

 

1) Infection.  There is many types of infections out there, with my low immune system it could be a number of different infections.  She did however say normally when you see pulmonary nodules and it's infection the edges of the nodules are rough or ridged.  Mine are smooth. That doesn't rule out infection just yet...

2) Valley Fever.  As I live in the region for Valley Fever, and my nodules definitely look as it could be Valley Fever, but I do not have the normal symptoms of Valley Fever.  The symptoms for Valley Fever are: Fatigue, cough, chest pain, fever, rash and headaches and joint aches.  I haven't experienced any of these symptoms except for headaches, which I didn't think anything of since I get headaches often.  I have also been complaining the past month or so about my body/joint aches.  It came on all of a sudden when I get up I am so sore, I hurts to walk in the morning everything from my feet to the top of my head is sore.  I was told it was a side effect from chemo.  So I just brushed it off as something that will pass.

3) Cancer has metastasized.  This freaks me out and scares the living day lights out of me.  The two places my cancer can metastasize to is my lungs or brain. 

 

Dr. Bohan didn't say one way or the other on what it could be, or even what she thinks it might be.  She did however say she wanted to do blood work to test for Valley Fever.  I did that Friday and it will be back in a few days.  She also said she wanted to do a Lung Biopsy, as suggested on the PET report.  She wanted that scheduled for the first part of this coming week.  I called my office to see when they could get me in and they had as soon as Monday (03.11.13) but needed to see what my BUN, Creatnine, PT, PTT and INR were.  If my platelets were too low (50 or higher is recommended) then I would need to have a transfusion prior to the biopsy.  I appreciate all those wonderful people out there that give blood.  I just don't want another transfusion if I can help it.  So I decided to put the Lung biopsy on hold for the time being.  I am going to wait and see what the blood work says.  I don't want a biopsy if not necessary to diagnose me. 

 

I should have my blood work back on Monday for the kidney function and all that.  The Valley Fever won't be back probably until Tuesday or Wednesday.  At this point I am hopeful that I just have Valley Fever and it's not cancer.

 

Still no word yet on a new Hem doc.  I was to see Dr. Gordon (Clinical Trial and Hem) but as it stands he doesn't take my insurance.  So I will have to be referred to another doctor.  I am going to see my PCP Dr. Nutakki (I use to work for her as well) on Thursday.  So I hope she can help me get some things lined up for new Hem docs. 

 

I have wonderful news as well...I got word on Thursday from my supervisor that they are going to allow me to return to work on a part time basis.  They had a position open for part time so they will just let me take it!  This is fantastic news for me! Such a weight has been lifted.  I was really stressed out for a few days on what I was going to do.  Working part time will not only give me some sort of income, but secure my benefits as well!!!  I think going back to work is going to do wonders for me! It will help keep my mind off so much!  As well as letting me have a "normal life" again!!!  I hope to be back to full time before the end of April or sooner!

 

Thank you God for answering our prayers!

:)

 

Tanya

 

DOCTORS, DOCTORS AND MORE DOCTORS...

Today was my follow up with Dr. Borst, well Michele.

We went over my PET Scan results OFFICIALLY! Ha ha she calls me or texts messages me all the time so I knew what my results were on Monday.  I love that about her.  I have her personal cell phone number and I am able to call or text her if I need anything at all.  She is just fabulous! :)

 

So we went over my PET results again, she told me the nodules on my lungs aren't showing up as cancer, but that we aren't really sure what it is exactly. Could be something as simple as an infection that settled in my lungs.  We just aren't sure yet.  She is referring me to see a Pulmologist (Lung Specialist).  That appointment is this Friday 03.08.13 @ Noon.  I have been keeping in touch with the wonderful and amazing Dr. Melody Rodarte.  (I use to work for her) She is the one that pulled strings to get me in as early as this Friday.  I owe Dr. Rodarte so much!!  She has been in my corner cheering so loud and pulling strings whenever need be, asking her colleagues to do her a personal favor by seeing me.  I love you Dr. Rodarte and THANK YOU SO MUCH!!  :)  My Pulmologist will be Dr. Amy Bohan.  It will be so lovely to drive 5 miles to see her vs. 35 miles to down town Phoenix where the rest of my Specialist are.  Dr. Bohan will hopefully be able to tell me what is going on with my lungs! Fingers crossed and prayers I don't have to have a lung biopsy!! This is what was recommended from the PET report.  A lung biopsy will use a needle to pull out some tissue from the spot on my lungs to be tested to find out what it is. 

 

I had my weekly labs done today, and of course my levels are still LOW! CRAP!!!  :(  My platelets were 42 today, again 120 is normal range.  So Michele is going to be referring me to see a Hematologist (Blood Specialist).  To see if maybe there is a underlying reason as to why my levels have been this low for about 8 weeks now.  Maybe it has something to do with the funk in my lungs?? We just don't know.  So I should be hearing from her tomorrow (I am hopeful) on who the Hematologist is and when I am scheduled to see this doctor.  Again I have asked Dr. Rodarte for her input and we are going to see if she can get me in with Dr. Sumeet Mendonca, and SOON!

 

While at the appointment this morning with Michele she let me know they have scheduled me to see a Dr. Michael Gordon.  He is a Clinical Trial Oncology Hematology doctor. I will put it the same way Michele did when she told me.  "You are a mystery, you have been since you were first diagnosed.  Nothing about you is normal.  Not your age, your diagnosis, your cancer, your lung funk, or your treatment, symptoms, nothing is normal about you, your a mystery" So, Dr. Borst would like to send me to see this Dr. Gordon, he values what Dr. Gordon has to say.  I will see Dr. Gordon for a consult only at this time.  He does clinical trials, so he is doing the latest and greatest testing.  Dr. Borst would just like a fresh pair of eyes to look at me and give some suggestions and input.  If the lung funk turns to cancer (which is still a possibility) then there is a possibility I will be in a clinical trial with Dr. Gordon. Which just this being a possibility is a little funny to me.  Not funny "hahaha great joke" kinda way, but when I was first diagnosed I followed up with Dr. Rodarte (she was my PCP at the time) and she told me "you might just end up being a clinical trial" and here all this is coming out.  My appointment with Dr. Gordon as of this very moment is scheduled for next Friday March 15th 2013 @ 1pm.  He is in Scottsdale.  As of right now it is just for a consult and nothing more. Try not to freak out like I did when hearing that news! ha ha :) I am going to try and get this moved up to early next week if they have any openings!!

 

I asked again when I could return back to work and Michele is hesitant to send me back to work, but some issues have arose and I will need to return back to work ASAP!!  My STD (Short Term Disability) has run out as of TODAY, yes I said TODAY.  I have applied for LTD (Long Term Disability) but if I am approved for that I will no long be considered a Banner Employee.  Which means:

 A) I won't have a job. 

B) I won't have health insurance.

C) No income.

SO...I have one last paycheck coming in tomorrow and after that I will not be getting a income at all. Unless I go back to work.  So I will need to return back to work ASAP.  No problem right? WRONG.  I work in a "call center" type job.  This department within Banner has a policy that if you do not have PTO in your "bank", you are not allowed to even request a day off work, even if the day you need off is 7 months down the road.  So for example if I needed this Friday off for my doctors appointment and I didn't get PTO until Thursday I am not able to request Friday off until Thursday when I have PTO in my bank.  That being said I am in a sticky situation.  How do I got back to work with all these upcoming doctor appointments scheduled?  I don't have PTO to request these days off or half days, yet if I don't go back to work I won't have health insurance or an income.  I called my supervisor this afternoon to see if I could at least return part time for the time being, which will turn into full time as soon as I get this all cleared up.  So I am able to keep my job, and health insurance and over all status at Banner, but I have some room to breathe and still attend my appointments without having to use PTO that I don't have, or getting written up for my attendance.   My supervisor will have to talk it over with the department head and see what he says.  I am hopeful they will be able to let me work part time around my scheduled appointments.  I am trying to get all these appointments scheduled this week or early next so I can return that much quicker to work and be full time and not part time.  I am not able to apply for STD again until I have worked 1200 hours.  So God forbid this lung funk turns to cancer and I need treatment again I am not sure what I will do.  Apply for AHCCCS I guess, as far as income...I don't know what I will do. I guess cross that bridge if it comes.  I pray it doesn't. 

 

My stress level went from 5 to 15 in one day!!! What the heck! That all being said I ALSO saw Dr. Zaky today.  If you remember way back when (ha ha to September) she is my Radiation Oncologist. (The one that administered the radiation therapy) We met and she did yet another physical. I tell ya I have had more physicals in this past year than I have my entire life!!!  She saw a spot inside that as she described it appeared to be a little dry and irritated, it was even bleeding.  We will keep an eye on it and make sure it doesn't develop into anything. This of course comes secondary to the funk in my lungs.  Overall the visit was pleasant and I will follow up with her in 3 more months.  I hope by then my hair is long and beautiful and I am living a normal life cancer free. 

 

Tanya

 



CANCER FREE...

I AM CANCER FREE!!!!

CANCER FREE!!!

DID YOU HEAR ME I AM CANCER FREE!!!!

:)

 

About two weeks or so ago I went in for a routine chest x-ray (cxr) only to get a text message the following day from Michele (Dr. Borst's PA) asking me to call her for results.  Of course I freaked out and called her right away.  She let me know the cxr showed a lung nodule on the left side.  After having Dr. Borst look over the cxr they decided we needed to move up my PET Scan (which wasn't to be done for 6 weeks, that would have been mid March). 

 

I had my PET Scan done last Friday.  It was a long process! I had to drink contrast, which I might add was Crystal Light infused and wasn't half bad.  I finally got that down and was moved into a room to get my catheter.  Yep you heard me...I had to get a catheter for my PET Scan.  The reason for this is with my type of cancer being in the pelvic area, and drinking all that contrast, my bladder could fill up and block some areas of what they are trying to get pictures of and that might cause them to miss something important.  Makes sense right?  Still and I can't say this enough I HATE, HATE, HATE catheters with all my life!!! This makes my third bout with catheters!!  I had the PET Scan and I have to say it went much better than the last one!!!!  The last PET I almost freaked out (yes I am a bit claustrophobic) this time they didn't have my arms tied down so it was much easier for me to just relax.  I still just kept talking to God and eventually before I knew it Fernando (my Tech) came in to tell me I was all done.  He was fantastic, which doesn't surprise me he works for Good Sam, they are all fantastic at that hospital! Fernando let me know my report would be read that same day and available to my physician by Monday (today). 

 

I got a call shortly after 9am this morning from Michele; letting me know she got my results back on my PET Scan.  She read me what the PET report said and when we both said "What does that mean?"  My PET Scan showed four, yes I said FOUR pulmonary nodules.  Two on the right lung and two on the left lung.  BUT the good news is there was no Cancer.  Bad news is we don't know what the nodules are on my lungs.  My cxr last month was clear, all my CT's, PET's and CXR's have all been clear.  So the questions arise "What are they??" The radiologist that read my PET suggested I have a lung biopsy.  Dr. Borst isn't ready to go that route just yet.  He is going to refer me to see a Pulmonologist.  There has to be an underlying reason why I have these nodules on my lungs.  They just appeared over the last month, but we do know they aren't cancer.  

 

I have many mixed feelings, I am so incredibly happy my PET Scan was clear of cancer, but then I have four nodules on my lungs and we don't know what it is.  That's scary too!!   I should hear tomorrow when my appointment is scheduled to see the Pulmonologist.  It was ordered as a STAT consult and will be this week, preferably before Wednesday as that's when I see Dr. Borst.  I haven't had my labs done yet for this week either and will have that done on Wednesday as well.  My levels have been low for about a month now.  Last week my platelets were in the 30's still.  The latest on the lab front is if this week they are still low (like they have been) they will refer me to see a Hematologist (a blood doctor).  I think by the time I am done with this whole bout with cancer I will have see just about every specialist there is!

 

I will continue to post about my progress! I want to thank all my supporters for everything! Thank you for encouraging me to never give up.  Thank you for always being there to help with fundraisers, and all the many many other things you all have done for me over the last 6 months... 

 

Thank you, Thank you, THANK YOU!

 

Tanya