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

Sea of Uncertainty

This past year has been one hell of an emotional roller coaster ride.  I have so many questions rolling through my brain on a daily basis -- and I am trying NOT to get bogged down in it.  *sigh*  I know that that is much easier said than done.

What if the cancer is still there?

What if the cancer comes back?

What if I can't handle going back to school?  {my stomach has been completely unpredictable since chemo}

What if I can't find a job?

What if I can't handle returning to an office environment?  {I seriously get hives and heart palpitations just thinking about it!}

What's NEXT?

What if...What then...What Next...

And I wonder why I can't sleep at night!  :-\

For Sale By Owner...Maybe...

On Sunday evening I posted the following status on Facebook:

Anyone in the market for a house in Steubenville? Great 3 bedroom, 1.5 bath, private driveway, nice neighborhood. Original hardwood, ceramic tile and carpeting throughout. Message me for details!

I had several folks tag others in the post, several messaged me out of concern, one called to make sure that nothing bad had happened, and several others messaged for details.

Essentially, 2ie found out on Saturday evening that her WV tenants are leaving at the end of January. We can't afford to carry both mortgages (which is how we ended up with tenants in the first place).  

2ie is sympathetic to the friend's circumstances, but also freaking out a bit over what will happen next -- do we move in there? do we try to rent it out again? do we sell it? do we sell mine? do we rent mine?

The 'obvious' choice (without getting too personal) is to move in to hers in WV - the monthly mortgage is cheaper and it has less time to pay off the mortgage.

Truly, one of our biggest hang-ups at the moment is that I am still going through treatments. While I haven't had the easiest time of securing any type of assistance, I have finally secured a small bit of it, and I am afraid that moving will cause that little bit to vanish. *sigh* {because this isn't 'just' a move from one city to another, it would be crossing state and county lines}

We have a list of pros and cons for both houses -- and one of our biggest pro points for this house is the neighborhood. We love our neighbors - J & G, B & D and the kids. We couldn't ask for better! I love hearing the church bells, and the train whistles (it reminds me of home)...BUT...the WV house has a front AND back porch, a garage, central air, a fenced in yard... Both houses have 3 bedrooms, 1 1/2 bath, full basements.

On one hand, I'm terrified to move...but on the other hand, I'm thrilled at the possibilities. We HAVE to clean from top to bottom and repair a few things before we can move in to the other house, but we have time to do that (at least we think we do at the moment). There is also the DAUNTING task of packing up this ENTIRE house and smooshing it all in to the other house -- with just the 2 of us. And, let's be honest, 2ie will be doing most of the hard labor herself as my right arm is not always reliable. Hiring movers is not a possibility at the moment - due to the cost of the labor - but, if anyone wants to help, I'd be HAPPY to cook (your choice) and supply some adult beverages (also, your choice)! :)

Selling either house seems like an impossible dream at the moment -- even though both are in relatively decent shape (oh hell, to be honest, both are near excellent shape compared to some I was shown when I was house shopping several years ago), the housing market is ROUGH! We both realize that we won't make a profit on either house, nor do we expect to....but I'd like to get out of it what I paid for it...to pay off my mortgage at the very least.

I know that there are several similar (and one notably smaller) houses in my neighborhood that are currently listed for MUCH more than what I'd list for...but as I said, I'd simply like to pay off my mortgage.

Any advice?

Good Bye 2013

I am excited to see 2013 end.  Odd though, I feel like I am still back at the beginning of the year...back in March...when I was first diagnosed.  Talking to other Survivors, I know that this feeling of 'going through the motions' is 'normal' -- that others have felt that same emotion when YOUR world stops but the rest of the universe moves on.  

Thankfully, most of the hard treatments are behind me.  I have already completed chemo...am nearly finished with radiation (just a few more treatments to go!)...and keep plugging along with Herceptin treatments and other drug therapies.  

Last Friday was my second Zoladex injection -- everything seemed to go well -- I had my Herceptin IV, then went to a private room for my shot.  The nurse took her time to numb the area (I still felt it, but she tried!).  I went home and lost the battle to the cold bugs that I had been fighting.  For the next few days I was more tired than normal, and in a bit of a stupor as my body rallied against the congestion and cold symptoms.  I woke up Monday morning and was getting ready for my radiation treatment when I noticed this...

Keep in mind, this is my lower abdomen - and the outline of the band aid is just that (an outline)...the band aid apparently applied enough pressure so that it didn't bleed OUT, but rather spread under the surface of the skin out to the sides.  

I asked to see the doc after treatment on Monday for 2 reasons -- (1) my head/chest cold, and (2) this gorgeous bruise.  The doc (not my normal doc, but another radiation oncologist) said that it sounds like I have the bug that's going around...that I'd have to 'tough it out'.  He didn't even listen to my chest (my raspy, snap-crackle-pop breathing).  The nurse did before he came in and she asked if I am asthmatic.  I told her that I have never been diagnosed as such but that every time I get a head cold, it settles in my chest (at least the last several that I have had) and then takes a very long time to clear up.  She made notes in the computer, but the doc didn't seem concerned.  She also looked at my bruise, said she would have the nurse that administered the injection come over to look at it, which she did.  Nurse J seemed a bit concerned and had me wait while she grabbed the medical oncologist.  She returned shortly after with the nurse practitioner.  The NP said that with the size of the needle from the Zoladex injection it is highly likely that it nicked something superficial, like a little capillary, and the pressure from the band aid must have kept it from bleeding out, but allowed it to bleed to the side, under the skin.  I was wearing a surgical mask (I put one on when I went in to the Cancer Center so that I wouldn't risk getting anyone else sick) and the NP asked if I was sick.  I told her about my symptoms - and again, she didn't listen to my chest - but she mentioned "that nasty bug" had been passed around with some of the staff too and that you just need to rest and tough it out.  She did mention that I should call or come back in if I had a fever accompanying my symptoms, or if the symptoms get worse or persist longer than a week.  I'm hoping that they're gone soon!  I've had enough of the hacking cough, feeling like I'm drowning in my own phlegm when I lay down, and not being able to lay on my side (I can't breathe).  I've also had enough of the nasal congestion and pain...the stomach nausea...the diarrhea. 

What a fun way to spend New Year's Eve, right?  I had planned to spend the day/evening with Grandma K while 2ie is at work.  We were going to cook up some good stuff, play a few rounds of dominoes and hang out (our yearly tradition).  Unfortunately, with this cold, I had to stay home.  I didn't want to chance getting her sick.  I did call and talk to her - she understands and appreciates that I don't want to get her sick, but I think we're both feeling a little blue not to enjoy each other's company for the day (...and the good food!).

My feelings about 2013 are best summed up as this...

Oh, 2013, you were not a kind year...you were one of the hardest, perhaps THE absolute toughest year of my life. You challenged me -- sending me numerous obstacles and transitions, some that I was sure would be the end of me. The human spirit is strong...and I dug down deep and found my strength in myself, my family and my friends. I fought hard, and I am proud to say that I am still standing. You have left your fair share of bruises and scars in your wake...I will not soon forget you, 2013. Ah, but I am so looking forward to ringing in a NEW year...hopefully 2014 will be the breath of fresh air that so many of us need and deserve. Sending out positive thoughts for peace, love, health and prosperity in the NEW YEAR! Welcome 2014!  ♥

Belated Thank You

I just wanted to take a moment to post a brief note of thanks for your love and support during my battle against breast cancer.  

Prayers, positive thoughts, encouraging texts/emails, cards, drawings/crafts from the kiddos, flowers, comments on Facebook posts, monetary gifts....ALL of your love, support and generosity is APPRECIATED more than you could possibly know.

The journey to recovery can be daunting at times but is made bearable by the love, prayers and generosity of family and friends...I am truly blessed to have each of you in my life!

Sending much love and many thanks,

~K~

gone in a flash

I can't believe it is already December 20th!  *whew*  I knew I hadn't written for a while, but didn't realize quite how long it had been (nearly a whole month!).  

To update -- after several "breaks" in treatment due to varying stages of skin reaction, I was finally released to return to radiation treatment (week of December 2nd).  I had a grade 3 skin reaction and man was that painful!  My skin was black in some spots, it had separated and opened up, and I was constantly in pain.  I'm still peeling and 'changing colors' but at least it's not painful like it was!  

I finished my "booster" treatment yesterday -- essentially my breast was taped up and the radiation was targeted specifically at my tumor bed and a specified diameter around it.  It allowed me to return to an active treatment schedule but still give most of my sore spots time to heal.  I go back to 'regular' treatments today...I truly hope that my skin cooperates so that I can finish my treatments.  I am currently slated to finish the first week of January *fingers crossed*.

I also have Herceptin treatment again this week (today).  I will have Zoladex shot #2 next week....and a repeat echocardiogram (on Monday, 12/30) to check my heart function since having resumed Herceptin treatments.  I am hopeful that the echo shows that I am still functioning in normal range so that I can put all of these treatments behind me.  I just truly hope that if there IS anything to be concerned about that it shows up sooner than later.  

The menopausal symptoms have began to rear their ugly head *ugh*  hot flashes, night sweats, mood swings, increased anxiety and irritability.  Oh, the joys of chemically induced change of life!  *sigh*  I sweat one minute, freeze the next, get mad at myself and then cry about it.  NOT pretty :-\

I am still wrestling with the idea that I may never have (biological) children of my own.  I went to my gyno this week and she said that many women are not able to get pregnant after chemo and the drug treatment course afterwards.  She said that our eggs are not always viable after those treatments.  She also told me that she doesn't see the need to take my ovaries right now, but that eventually we should discuss it.  Not sure why the wait...but there are drugs out there to stop my body from producing estrogen and to block estrogen in my body...so, I will follow the course of action that my medical oncologist has suggested (for now, at least).  

I cry every time I watch something with the birth of a child, or a sweet pregnancy announcement.  We have been watching past seasons of How I Met Your Mother and in season 7 (2011), we find out that Robin Scherbatsky (Cobie Smulders) can't have children.  Until then we know that she doesn't want children, but then she thinks she may be pregnant and learns that she actually cannot have children.  I cried through every episode of season 7 that deals with Robin's infertility, her coping with her infertility, and her friends learning about it and reacting to it.  There is a quote from an episode that seems to effectively sum up my (many) emotions on facing your own (possible) infertility:

Of course it’s one thing not to want something. 

It’s another to be told you can’t have it. 

I guess it’s just nice knowing that you could someday do it

if you changed your mind. 

But now, all of a sudden that door is closed.

We have also been watching past seasons of The L Word.  Any fan of the show knows that in Season 3 Erin Daniels' character, Dana Fairbanks, finds a lump in her breast.  She goes to the doctor and is soon diagnosed with breast cancer.  She suffers through treatments and dies later in the season.  It was heart wrenching to watch this season in 2006, to see a character that we came to love battle breast cancer only to be defeated by it.  It was even harder to watch it now, going through this journey.  I cried through every episode of season 3.  The series creator Ilene Chaiken did an awesome job with this season.  Perhaps it was my new found perspective on it all, but it gave me chills from the time that "Dana" finds her lump until she takes her last breath...I was emotionally invested.  I honestly didn't think I was strong enough to watch this season yet.  As I cried through each of the episodes, I realized that I was not alone.  2ie was watching the season too and crying right along side of me.  She was also empathizing with the characters and connecting with the story line in a whole new way.  If you haven't seen the show, I recommend it.  At very least, season 3.   

Final thought of the day -- I am dealing with trying to navigate through all of the accumulating medical bills.  I am particularly frustrated over one at the moment.  I seriously have 5 different bills for the same date of service and same surgeon.  Each one is billed from a different entity for a different action/portion of the procedure.  Each one is subject to the individual billing office's terms of service.  Ironically, 4 of the 5 acknowledge and accept the hospital's charity care program determination as an accurate determination of hardship; but 1 does not.  This same 1 will not re-submit any items, as the woman indicated that the items were originally denied due to the wrong coverage.  It turns out that they attempted to bill a family planning coverage for surgery when all that the family planning coverage (through the state) will cover is a pelvic exam, birth control and a pap smear - it doesn't even cover preventative care (mammograms) or any type of breast cancer related diagnostics or treatments.  How do the politicians endorse these programs?!  Seriously!  *smdh*  I have several phone calls in to various folks hoping that SOMEONE can help me navigate this whole mess -- including the financial department at the hospital and the patient advocate at the cancer center.  *fingers crossed*  

...Happy Friday...