for real…

12 Dec

For waiting and waiting, the wheels are now turning.  We got back word on my PET scan…not that big of a malignancy and no metastasis that they can detect anywhere else.  That was a relief; we jumped around excitedly for about 24 hours and then the fact that I still do have cancer (and pretty rare, bad cancer) settled back into our thoughts.  Also, my diligence with MD Anderson has paid off…they have accepted me and my insurance cleared it…wahoo!  AND they want me there next week.  Of course, I’m there…though what a rough time for us…number one it Christmas holidays and number two…we own a gift shop.  Thankfully, family is taking the reigns and I’m learning to let go of my baby I created almost three years ago.  For the first time since this diagnosis, I’m afraid.  I think I was hoping in a small way the MD Anderson would call and say…”wow you hardly have cancer; stay with your local ENT and you’ll be ok FOREVER!”.  Now that they’ve accepted me; I know its serious…I know surgery is inevitable…and a long recovery.

Another hard issue has been explaining this to my friends and family.  Everyone has so many questions (so do I!) and I do my best to keep everyone informed yet they always say after I’ve gone through detail by detail, “I know…but blah blah”  In particular, about Christmas…my family and extended family are trying to desperately plan and asking me repeatedly if I’ll be home.  Seriously, I could be in recovery???  I’m doing this so I can be there for every Christmas afterward.   Its a lot for anyone to wrap their head around so I’m trying to be patient.

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hang in there…

7 Dec

Its funny when you tell someone you have cancer they immediately tell you about someone they know or heard of that beat it and is now totally fine…like it was the common cold.   I certainly hope to be in that number, but it gets tiring — I almost want to shake people and scream “no, this is different”.  No one wants to come face to face with mortality, so I don’t burst their bubble.  Also, everyone seems keen on finding me something to do or keeping me preoccupied…which is funny because I still have the same life I did before my diagnosis with all its problems, errands, dreams, etc.  My main concern right now is to get the piece of shit tumor out of my head that is actively trying to kill me.  Its been a week since my PET scan with no news (despite my calling for the results).  I should know very soon too if I have been medically accepted by MD Anderson…which will be the best Christmas gift ever especially as I saw my PET scan orders that day of the scan that read routine on status.   As best I can tell nothing nothing is routine about this cancer and the irony of everything is how fast you feel time passing since your diagnosis yet all you do is wait wait wait for results and treatment.

here. in my head.

1 Dec

Its been awhile since I’ve written and with good reason.  I’ve been battling for years and lets say for the two last years in and out of doctor’s offices with suspected TMJ, fibromyalgia and chronic fatigue.  I have to say I had grown comfortable with all these diagnosis, though I was not improving, they were a label and they were not truly bad.

After a bad impacted ear my girlfriend urge me to go to the ENT and show her the painful lump in my jaw.  It’s been felt up so much by dentists, oral surgeons, doctors it could be called a slut…and was often mistaken for a tight muscle associated with TMJ.  The ENT doc immediately thought it to be a tumor on my parotid gland and scheduled a CT scan.  No biggie, I read 80% are not cancerous.  I had the CT scan and then we followed with a needle biopsy (which was incredibly painful) and days later we had our diagnosis.  Cancer indeed.  And not any old cancer…a very rare cancer called Adenoid Cystic Carcinoma.

Yesterday, I went for a PET Scan and will have the results soon to know the extent of the disease.  Knowing how I feel (how I’ve been feeling for years),  I’m not entirely thrilled with all being revealed.  I am actively taking responsibility for my care and I’m in the process of self referring myself to MD Anderson for consultation and hopefully acceptance.  They are the closest to me doing the most advanced work with this type of cancer.

Again, my girlfriend is urging me to write about this to help others.  Though I’m not sure how much help I could be…if you found this, you may already be diagnosed and as I’m learning every case is completely different.  I will tell you the following:

  • I’m 35
  • no one in five generations of my family ever had cancer
  • i never asked my doctors enough questions or the right ones
  • i was satisfied with diagnoses that were not congruent with what I was feeling
  • i want to fight

paris bleus

18 Aug

I am managing my friend’s Etsy shop during a busy time for her and these three pendants she made sort of struck me that I had to put them in a combo offering.  I think they would be just lovely layered as necklaces or even as charms on a bracelet.

I am the ultimate Francophile but seeing this pretty trio made me a little misty for a stroll through les Tuilleries.  I need to get to France…bad!

The dish comes from here.  Merci!

cupcake porn

17 Aug

C and I were having a serious discussion about a week ago about cupcakes (that’s how we roll).  C had heard from someone who had heard from someone else that cupcakes were out or trending down.  Uh whatever.  If loving cupcakes is wrong, I don’t wanna me right!  Let me tell you why (IMHO) cupcakes will never go out of style.  They are perfectly portioned, well-crafted, and not to mention delicious!  Luckily, late last week I came across three pieces of evidence to build my case:

I rest my case…and now I’m hungry.

competing for the sun

9 Aug

in case you wonder how flowers spend their Mondays; I spied a couple in the garden this morning.  I know it looks like I put a soft focus or blur edit on these photos; actually, it was the sheer fact that I walked straight from the A/C to achingly hot near 100 degree temps outside.  I actually like it…the effect…not the heat.

wedding belles

7 Aug

it HAS been a week…sorry about my previous rant (I did go to another doctor with little to no avail to help with my situation…so, I’m left pretending nothing is wrong…and we will see how long that works).

Business has been slow on the retail end of my business this week; however, fortunately I was slammed on the wholesale side of business.  (I make these great pom pom kits and children tutus).  In fact, I had so many orders that I took over a portion of the retail floor to prepare and package.  To which, one customer remarked as I was literally up to my eyeballs in tissue pom poms, wow, you need a real job! While trying to not stab her with a pair of scissors, I said through clinched teeth, this is my job. Later that night, C and I had a lengthy discussion about it; that no one makes ANYTHING in this country (U.S.A.) and that no one can recognizes when its happening or thinks that something is wrong with making handmade items!

There was more drama this week, if you can believe…I’ll save it and leave you with a beautiful escape we managed last night.  Friends of ours married under the stars and let us share in the magic.  The bride was beautiful, the groom handsome, and now a little boy and 5 loving pets are now a family.  We wish them the best!

The happy couple

The groom’s cake featuring all of their pets…so cute!