It’s been over ten days I’ve beeen living with this super hard mass in my left chest.  Today I had my regular appointment with Dr. Schott, Oncologist at U of M.  She sent me for an ultrasound, and the verdict is……………..!  Right–no real answer.  They are pretty sure it is not a tumor, but no idea of what it is….well. they have an idea.  It might be fat necrosis, none of the docs are 100% sure. 

SO-the plan is to watch it and wait……….

brief update

yea, I know not much has been posted here lately.   Partly, that’s good news.  Means I’m at least still at work, and not at home recuperating in bed.  I have had lots of news to share, just not the time to write. 

Life seems crazy busy, and I feel as if I’ve been swept onto the fast train.  It’s not all bad.  I’ve had some really cool opportunities come my way and had fun.  But also have new responsibilities both at home and work, and not another minute has been added to the day to get it all done.  I’d be frustrated, but I’m too tired to work up that much energy.

In the meantime, a quick update:  Seems as if the recent ultrasound (ovaries) was OK, but really I’m not completely convinced.  Maybe it’s the cancer apprehension speaking, but I think when I see the U of M onco next month, I’ll schedule the genetic (BRCA1 and BRCA2) testing.  Might as well know those odds.

Reconstruction surgery #2 has been delayed due to DVT, but the plan now is to have that surgery in January.  And speaking of DVT, I’m still on blood thinners and my goal is to be off of them by November.  I’ll be very lucky if that happens, but that’s what I have set in my mind at this point in time.

Just this week during my radiation oncology visit my substitute-doctor told me the weird metal taste I’ve had in my mouth for a week now is Thrush.  Great.  Another medicine.  Another thing to deal with.  But, I guess on the scale of all the things that could happen, I should probably be grateful that I have a stupid fungal infection now.  At least I’m trying to talk myself into that mindset for the now.  But, it also means that my immune system is not where it should be………sigh…….it’s all so disappointing. 

But in the meantime, I just keep getting through each day, and hope that I might actually be seeing a sliver of light at the end of this really crappy tunnel.

quick note

Thank God I get to go to work.  Not only do I really love what I do, but it feels like a “return to normal”.  Yea, I had stupid technology problems all day today at school, but that is kind of normal, too for the beginning of the school year.

As long as I wear the horribly hot compression stockings I think my DVT side will make it.  I hope.

At least I feel good. I’m grateful for that.

disappointed

So this last week I spent a fair amount of time and psychic energy chasing a different treatment (called the ATTRACT Study, short for Acute Venous Thrombosis: Thrombus Removal with Adjunctive Catheter–Directed Thrombolysis) method for DVT (blood clots) but in the end, I found myself in a box canyon.  I was, and still am, so disappointed.

Lou found an article about a new method of delivering clot busting drugs directly to the area in the vein via catheter which then also mashes up the clot and eliminates the risk of “post thrombotic syndrome”.  Not only that, a doc here in Toledo is one of the principal investigators in this study.  So after a some time thinking about it all and doing a little research, I finally got through to the person in charge……and found out I was about two weeks too late to be considered for the study……….sigh. again…..

I am trying to be positive, but sometimes I just get disappointed.  Not mad or sad, but disappointed.  The more I learn about the dangers of DVT and Post thrombotic syndrome, the more I want this phase to be over. As I write this I have my leg elevated and on ice because it is quite swollen tonight.  This is not how I wish to spend the rest of the year, much less the rest of my life.  I’d really like to be able to just go for a walk without constantly checking my ankle to see if it is getting swollen.

This is worse than the summer of chemo, because at least that nastiness had an “end date”.  This DVT business is like an ugly storm cloud that follows you around everyday, and unleashes a blinding torrent of rain and debilitating hail without any warning….you just have to always be completely prepared to deal with it……which means a lot of time spent thinking, “should I be going to the hospital right now or is this ok?”

To find out more aboout the ATTRACT Study, go to:  http://www.attract.wustl.edu/

the goal is 2.0 to 3.0

With the DVR (Deep Vein Thrombosis) diagnosis, you get to make a new set of friends with the phlebotomists.  Ironically, I went through the holiday weekend, being driven back and forth to St Luke’s Hospital with my friend Bill (who was diagnosed with DVR just 4 days before me) for our daily blood tests.  It was almost OK to go through this crap with a friend.  Except for the fact that I still have stitches in my abdominal wall, and all the stupid jokes hurt.  Anyways, the drill is: 

1. Get somebody to drive you to the hospital
2. Hope the place has your orders so you don’t have to go through a big hassle
3. Get your blood test.  If you can only use one arm like me, hope to hell your technician is really good, and doesn’t rip up your vein too much since it is getting so much attention.
4. Go home.  and wait.  for hours.  until finally….
5. The phone rings and the nurse practitioner calls to tell you what your PT/INR level is and how much coumadin to take that day.

Seriously.  Your dose of Coumadin can easily change from day-to-day until you are “stabilized”.  You are stabilized when your INR level (for most people) is between 2.o and 3.0.  Sometimes this can take weeks.  Saturday I was at 1.0.  Sunday I went to 1.1.  Then on Monday, a little hop to 1.3…

And amazingly, I have good news.  The twice daily injections (that is self-injections…..ick) of  quick acting short-term blood thinning drug “Lovenox” and long-term drug “Coumadin” has worked well for me.  Today I was rewarded with an INR level of 2.1!  Might not sound exciting, but it means no more self injections, no more support stockings, and no more daily blood tests.  I have graduated to twice a week blood testing schedule!  (It’s all relative………)  If I am really lucky, my levels will remain in to 2-3 window, and I can get through this medical phase quickly.  Quickly means maybe only six months of this drug.  Of course, it also means putting off the surgery I had hoped to have in August for six, seven months or more………..  Sigh………

Now for the serious news.  I have to meet up with my medical oncologist again to determine if my maintenance drug, Arimidex, is responsible for the blood clots.  A serious question that needs to be discussed is:  Which is more risky…..going off Arimidex and risking recurrence of cancer, or going off of Coumadin and risking blood clots. 

:^(

new stuff

So.  I am learning new stuff all the time.  The blood clot business is giving me a new area to research.  Here was my ten-dollar question for the day:  Exactly what does PT/INR stand for?  See, now that I have blood clots my daily regimen includes getting a blood test.  Daily.  Holidays and everything.   I can stop getting blood tests daily when my PT/INR levels go up….which is what the daily blood test is for… 

So, according to www.coumadin.com, the PT/INR allows your doc to monitor how effective the blood thinning drug Coumadin is working for you.  PT stands for Protime test or Prothrombine time depending upon which website you choose to believe and INR is International Normalized Ratio.  So I know what the words mean, and……….?

From: www.labtestsonline.org       “The test result for PT depends on the method used, with results measured in seconds and compared to the average value in healthy people. Most laboratories report PT results that have been adjusted to the International Normalized Ratio (INR) for patients on anti-coagulant drugs. These patients should have an INR of 2.0 to 3.0 for basic “blood-thinning” needs. For some patients who have a high risk of clot formation, the INR needs to be higher – about 2.5 to 3.5.”

Anyways, on day one of new drug regimen, my PT/INR level was 1.0.  Doc called me two hours after test, increased my dosage of my new drug Coumadin.  Today, PT/INR level went up to 1.1.  A disappointing increase.  Another increase in Coumadin.   I guess I am going to go on like this on a daily basis for awhile….in the meantime, everything else is kind on hold, until this new malady straightens itself out. 

It requires real effort to not be bummed out about this.

the value of being informed

So.  Yesterday in the mail I received the summer issue of cure , a quarterly publication on cancer updates, research and education.  Normally I just scan the issues for BC info and then maybe read more later….but yesterday, for some reason, as soon as it hit my sweaty little palms I read the thing from cover to cover.  It was particularly interesting to read a small article titled: Bad Block.  Being aware of the dangers of deep vein thrombosis.  Deep vein thrombosis is commonly known as blood clots to your legs.

The opening line of the second paragraph caught my attention….”In cancer patients, research has shown around 50 percent have DVT (deep vein thrombosis) at some point.   Symptoms of DVT include pain, swelling, tenderness…..Sometimes there are no symptoms.” 

It continued on with causes, such as

• “most chemotherapy drugs can be associated with a risk of DVT because they can damage blood vessel linings…”
• Hormonal therapies “are common culprits”
• Other risk factors are things such as blood transfusions, having a port-a-cath, recent surgery , serious infections, injury or surgery to the legs,and/or being subjected to bed rest

Mostly, I found the article interesting because my husband, Lou, has been dealing with DVT for three months and another friend was diagnosed just days ago with blood clots in the legs as well.  Of course during my recent hospitalization for the TRAM Flap operation I almost constantly had on either compression stockings or those funny inflatable leg cuffs that constantly squeeze and release your calves to prevent the formation of blood clots.

Then I read other articles.  Went on with my day.  Took a nice long nap in the cool air on the front porch all snuggled up with a blanket.  Made an easy dinner for Charlie.  Looked at the newly finished renovations the basement.  Just generally floated around the house doing a little organizing.  That article kept coming up in my mind as the evening wore on.  I began thinking about a general sense of discomfort I had been having in my left leg for a few days, a kind of general achiness.  Finally as I got settled in for my bedtime reading I picked it up again and read it, then looked down at my left foot and leg to see…a really swollen ankle, foot, calf and knee.  Shit.  Read some more.  Jumped on the internet for a little quick research.  Thought to myself, “Am I crazy?  Have I talked myself into this DVT somehow?”  Feeling like an alarmist so late at night, I emailed super nurse Suzi who provided very useful suggestions and a follow-up call to Primary Care Physician first thing in the morning.  Of course, I followed her directions to the letter.

Then I read more about the dangers of DVT.  Mainly, the biggest concern is a hunk of clot breaking off in the vein and moving to the lung. Then if that happens it is called  ” a pulmonary embolism which is a very serious condition that can cause death.”  I read that sentence a few times before I started to cry…..  Being so scared so late at night sucks.  All I could think was….”so what now?  I get over cancer and then I’m gonna die in my sleep from a stupid blood clot?!”

So this morning I saw a doctor.  He sent me to get a Venous Doppler test, a kind of Ultrasound of the entire leg.  The news wasn’t good.  Extensive blood clots in my left leg.  Go straight to the hospital.  That was at 2:30 this afternoon. 

Now I’m in St. Luke’s Hospital, have already had the first blood thinning drug, Coumadin and am waiting for my second drug, Lovenox.  This one they usually teach you to inject yourself in the fatty portion of your belly, except for now…..with the TRAM Flap surgery, there is no fatty section of my belly, and anyways, I’ve had enough done there.  No more interference there.  With any luck, I won’t have to stay overnight.  I hope not.  The doc-in-the-box I saw at 5:30 said I could go home tonight.  Now it’s 9:00 and I’m still waiting for an injection.  Sigh.

I am so ready for this chapter of the book to be over.