Wednesday = Puke Day...I mean PET Scan day

Yeah, you read that right...today (Wednesday, 2/19) was my PET Scan day.  First PET Scan since the completion of my chemo and radiation.  Although I am still on Herceptin until June and Tamoxifen and Zoladex for several more years, Dr R mentioned scheduling a PET Scan during my last appointment with him (1/28).  Last Friday (2/14), I went in for my Herceptin treatment and received paperwork with my scheduled PET Scan and MUGA Scan.  Unfortunately, the PET Scan was scheduled for 1:00 PM...same as last time.  Ugh.  One of the things I remember the most about my initial PET Scan in May was that after 16 hours of fasting, I was pretty miserable.  I remember having a headache and being sick to my stomach...but that was it.  I followed my test prep instructions by watching my sugar intake for the 24 hours before, and not eating or drinking anything (besides plain water) after midnight the night before.  I woke up this morning with a killer headache and feeling nauseated.  At that point, I knew I was in for a rough day.  Things got progressively worse as the day wore on.  I threw up twice (before and during the test).  It was mostly water and bile, but the oncology nurse said I was quite pale and clammy.  The first time I threw up was before the test.  I mentioned that I wasn't feeling well, but both the nurse and I contributed that to the fasting.  My sugar levels (which they have to test before the injection) was decent (86).  As I mentioned, I was simply nauseated and had a headache.  I had just been injected with the radioactive material and was reclining with a warm blanket and relaxing for a bit before the test.  Suddenly (and I DO mean SUDDENLY), my jaw was twitching, my mouth was watering and I was wildly groping around for the call button for the nurse.  Before I could push it, I was throwing up water (and bile) and soaking the blanket and all of my clothes.  The poor nurse opened the door to me gagging and yakking...she calmly handed me a sick bag and patted my shoulder as I continued to puke.  Then she gave me some clean wash clothes and a towel and a hospital gown.  Because my clothes were soaked (clear down to my underwear!), I had to clean up and change.  They were not sure if my wet clothes would be radioactive yet and possibly alter my scan.  I complied and cleaned up.  I also had to call 2ie and ask to have clean clothes brought to me.  Thank goodness she was able to bring them to me before going to work.  I returned to my chair and continued to relax until they were ready to scan me.  The tech came in and walked me to the testing room.  I laid down on the table, feeling a little icky, but no warning signs of what was to come.  I went in and out of tube twice, and then the segmented scans started (you move through the tube every 3 - 5 minutes, and it scans an area of your body).  I kept my eyes closed - even though the lights were lowered, they were hurting my eyes.  I hate it when I have a headache.  I was fine until I started to go back through the tube.  Suddenly (and I DO mean SUDDENLY), my jaw was twitching, my mouth was watering and I just knew I was going to throw up.  I said, "Oh no...I'm going to get sick!  HELLO!  HELLO?!  I'm..."  ...and I started to puke again.  I heard the tech say she was coming to help me...I heard her call out for the oncology nurse.  Before they had me out of the tube (just a matter of a minute, maybe), I was soaked AGAIN.  They cleaned me up and changed my gown again.  The tech said that she was able to get most of me scanned before I got sick.  She asked if I thought I could handle about 20 minutes more of scanning.  I said I thought so...after all, it had been about an hour ago that I had first thrown up...I figured I had at least that.  They also had to tape my breasts because the gown was not holding me in a good position.  I hope that the various problems of the day didn't cause any problems with the scan overall.  I felt a little better after I was finished and had a small can of pop and some graham crackers (again, after nearly 16 hours of fasting).  I still don't feel GREAT, but I'm much better than I was earlier today.

Oh, and as an added bonus - I'm radioactive! ;)  I was instructed to stay at least 6 feet away from other people (especially pregnant women) for 6 hours after the test...and not hold any infants or children for 18 hours.  I asked about pets, but there is no definitive research done on that topic...so I am just trying to keep them off of me (easier said than done).

Yesterday (2/18), I saw my cardiologist for my 2 month follow up.  He was pleased with my blood pressure chart, saying that they looked good in the normal range.  He said (several times) that he would like to increase my meds, but that with my blood pressures and heart rates running in the normal range, he wasn't entirely sure that I would tolerate the change in medicines.  He was afraid that the increase would make me dizzy/light headed...so for now, we are not changing the meds.  He was glad to hear that I have a follow up MUGA scheduled in March.  He gave me more info on my last ECHO and MUGA.  He said that the ECHO had shown my EF at 45 - 50% (down from 59% since restarting my Herceptin)...but he wasn't entirely confident in those findings, so he ordered the MUGA.  The MUGA showed my EF at around 51% -- which was within the normal range to continue with Herceptin as is.  My notes from my visit say:  EF confirmed by MUGA to be 51% acceptable, will need to follow with repeat MUGA in future, ECHO (1/2014) EF 45 - 50%, MILDLY DILATED LV, TDS, mild golbal hypokinesis.  Due to have a repeat MUGA in 3/2014, BP logs reviewed, BP stable, some times SBP 95-102 MMHG, WILL NOT INCREASE DOSE OF MEDS, CONTINUE TO FOLLOW, if more palpitations, DOE, or chest pain she will call us.  {what is LV/TDS/golbal hypokinesis??}

On Friday (2/7), I went for my Herceptin treatment as usual.  I waited for over 90 minutes for a nurse to access my port and hook up a saline drip.  The Cancer center was crazy busy, so I didn't mind waiting.  I had just texted my mom saying that I was still waiting for a nurse (my appt was at 10:30, and it was noon) when the nurse (Valerie) came over to access my port and hook me up.  My Herceptin was ready also, so it was all hooked up at the same time.  She programmed the pump, had a nurse (Melissa) double check the pump.  The 2nd nurse commented (as they all do) about the fact that my drip time was 90 minutes, not 30 as is the case for the majority of other H patients.  She laughed when I joked about being abnormal.  I was chatting with the patients and families around me (some older ladies and their daughters) when I looked up at my H bag...which should have still been nearly full.  Imagine my surprise when I saw the bag was EMPTY!  I quickly looked at the clock...just about 30 minutes had gone past.  My pump started sounding the alarm (as it was done with the H and switching to the saline flush).  My nurse was walking past so I caught her attention and pointed out my H drip should have been NINETY minutes, NOT THIRTY!  I asked if it would cause any problems for me (as I'm already experiencing Herceptin induced Cardiomyopathy).  She looked quite panicked.  She went to my Dr's nurse...then my Dr...then came back and said that the Dr said it was fine...that it was more about the AMOUNT of the dose, not the drip time.  So, WHY IN THE HELL do I sit through NINETY minutes each week and NOT THIRTY!?!?!  *sigh*  This past Friday (2/14) was 90 minutes drip time again.  *smdh*

In regards to my PET Scan today, I have been praying for a clean scan.  I have also been praying that IF I DO have ANY cancer in  my body that it is found NOW (sooner rather than later).  Please say a prayer for me.  xo

Appointments, Scans and Emotions

Last week was a total roller coaster of emotions :-\

I saw my Dr (medical oncologist) and had to have ANOTHER test (MUGA scan to follow up the Echo), had some surprising news from him about recurrence factors, cried (in public) despite my best attempts NOT to...and was RADIOACTIVE (seriously! the muga injection left me (slightly) radioactive for at least 2 days)  *sigh*

Perhaps I should start at the beginning...

I went to the Dr (medical oncologist) on Tuesday (1/28) and had an interesting appointment.  It appears that my ejection fractions are going down again.  Since restarting Herceptin in November, my EF went from 59% to about 50%.  I'm still within the 'normal' range that they can continue my Herceptin, so it looks like that will happen, at least until my next echo (approx every 6 weeks).  The MO did tell me that the Cardiologist felt confident in the echo results, but that there was a part of the left ventricle that he wanted a better view of, so they ordered the MUGA scan.  

After discussing the additional test, we started to discuss breast cancer recurrence factors and ways to lower and keep the risk factors lower.  He asked again what my plans were for having children.  We discussed removing my ovaries and what that would mean for lowering recurrence and risk factors.  He told me that as a physician he can't tell me NOT to have children, but that he has my personal best interests in mind (meaning keeping ME healthy) and that it is alright to feel 'selfish' in my decision making.  We had an odd discussion about men and what it might mean for my future marriage if I was unable to have children {please don't judge...it was odd and I couldn't comfortably out myself at the moment...even though, I swear we have had that discussion}.

Looking at the pros and cons of removing my ovaries versus leaving them, it appears that removing them may be the best bet.  Not only will it stop my body from producing estrogen (or at least the majority of the estrogen production), it will also allow my medicines to change.  I will no longer require monthly injections of Zoladex (one less chemical to have in my body) and he can change my daily medication from Tamoxifen to another med (often prescribed to post-menopausal patients; those without their ovaries) with less side effects.  He said that the new daily med would not have the high associated risks that Tamoxifen does (blood clots, increased risk of uterine cancer).  He also said that women who have had breast cancer are already at a higher risk of developing ovarian and uterine cancer.  Removing my ovaries would remove the risk of developing ovarian cancer.  He also pointed out that with my cancer being as aggressive and fast developing as it was, and being Stage 3A with lymph involvement (4) at such a young age, I may not be so lucky next time.  He pointed out that even without ovaries, that I would be able to carry a child in utero, but that even that could have risks as I would require hormone therapy to have a safe pregnancy (which in turn would make it unsafe for me).  I told him that my gyno (at my last annual exam) had said she would remove my ovaries at some point, but not yet; he asked if I would like for him to call her to discuss; I said yes, and he is supposed to call her. 

It looks like it may be better for me to have my ovaries removed (possibly even a complete hysterectomy), but I'm not 'accepting' it well.  I hate knowing that if I do what's in my best interest health-wise, that I won't have biological children.  I realize that I need to do what's best for me...but there are moments when I feel so damn defeated...that Cancer has STOLEN the beauty and possibility of Motherhood...that Cancer has scarred me and changed me...that it just isn't FAIR.  I also realize that it entirely possible for us to adopt, foster-to-adopt, or even for my honey to carry the child...but it SUCKS that I won't have a biological child of my own.  It sucks that it just seems that pregnancy is altogether a near impossibility at this stage, due to associated risk factors.

I then went to the chemo area for blood work;  Dr asked when my last blood labs were and I said either late Sept or early Oct;  he ordered a CBC, CMP and CEA.  Of course, I was upset and my mind was reeling after our discussion of ovaries and risk factors/recurrences, etc.  Try as I might, I cried...in public.  My nurse was awesome and grabbed a tissue for me and asked if I was okay.  My honey was awesome too!  I had a text that told me how special I am, how much I'm loved and that I should do whatever would keep me here the longest with her.  I'm so lucky...truly, I am!

I received my results on Friday (1/31), but no discussion about it.  I compared my CBC and CMP numbers to previous draws and they seemed 'normal'.  The CEA was the first test of its kind that I have had (to my knowledge).  The range is 0 - 40.  My number is 14.6 -- not sure what that means exactly, as I have NOTHING to compare it to at the moment.

The Dr asked if I had had my annual mammogram yet.  I said "No, my first ever was when I was diagnosed last year...I'm only 34, remember."  He told me that he'd have his office schedule one for me (and they did) for March.  He also asked if I had had a follow up PET scan yet.  I shook my head (no) and he asked, "Would you like to have one?"  I nodded emphatically and practically shouted, "YES!"  They have to get a pre-auth before they can schedule.  I plan to check on the status when I go back for Herceptin this week.

My MUGA scan was Wednesday (1/29).  The test itself is fine, albeit LONG because they have to wait for approximately 25-30 minutes after the injection of the radioactive material to take the pictures/scans.  I was there for about 2.5 hours.  Not too bad...but I did have a killer headache that day, so when the tech started moving the bed around to reposition me for different pictures/scans, I thought I would barf on him, but I held it together.  HAHA