Tag Archives: Factor V Leiden

TMI Thursday, The Final Frontier…

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I saw my plastic surgeon earlier this week and scheduled what will hopefully be the final step in my breast cancer reconstruction surgeries.  He agreed that he would do as little as possible to minimize the chance of any bleeding/clotting complications.

The normal procedure would be to make an incision under the breast, remove the saline filled expander and replace it with a silicone implant. Not so much chance of bleeding with this.

Then he would perform a “lift” on the unaffected breast to make it perkier so that it better matched the side with the implant.  (Not a lot of natural perkiness going on if you know what I mean!)   Some risk of bleeding, but I said if he decided it was necessary to keep me from tipping to one side to just go ahead.  He didn’t even crack a smile…

The last step would be to liposuction fat from the abdominal area (I know, how could that be a bad thing, right?) and insert said fat into both breasts to create a more natural, rounded appearance. Still no bounce, but softer. But I told him I just can’t do this.  Disappointing, but it just seems too risky with the bleeding to take the chance.  I think he was relieved I didn’t want to try 🙂

So I’m scheduled for surgery on March 10.  I’ll almost certainly have to stop the Coumadin five days before, do the injections in my stomach twice a a day up till the day of surgery, then the hematologist and surgeon will decide how soon to resume the shots and Coumadin afterwards.  It’s a crapshoot with me because of the Factor V Leiden clotting disorder I have but hopefully there won’t be any complications this time.  I really want to be finished already!

Apparently chemo affects your hair, nails and skin for the longest amount of time.  My nails are pretty good, just tiny black marks on some.  My skin has been drier and I’m using moisturizer and body lotion every day.  Most of my bottom eyelashes have fallen out now.  My top lashes are mostly still there as are my eyebrows.  Thank goodness for make up.

My hair on my head is finally growing back.  Right now it’s this soft, down-like fuzz that’s pure white.  From what I’ve read, it may stay like that or get darker or curlier.  The doctors really don’t seem to have any idea why this happens.   Waiting for it to grow back has been about as exciting as watching paint dry.  I still am startled when I catch a glimpse of myself in the mirror — like a big-eyed alien with a glowing white halo!  I’ll show you a picture soon, promise…

So, there, more than you ever wanted to know about me, right?

And Down the Rabbit Hole Again…

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You might have noticed I haven’t posted much lately…or maybe you haven’t.   Anyhow, the reason I’ve been away is because I have been away — back in the hospital on Sunday, this time because I developed blood clots in my lungs.  The pain of taking a deep breath, coughing, oh, my God, yawning, was excruciating.  Luckily two and a half days on an IV of heparin have helped lessen the size of the little buggers and letting blood flow through again, so the pain is less, too.

On Monday, when I saw my hemotologist/oncologist in the hospital, she brought with the results of my genome or Oncotype testing, where they look at the genetic characteristics of your tumor and assign it a number between zero and fifty to determine whether chemotherapy would be helpful in preventing a cancer reoccurrence in the future.  Zero to 17 is considered low risk and chemo would probably not make a difference.  My number is 24.

So I’m in the intermediate range and she is recommending chemo, of course!  She and the surgeon were both very surprised, given how small the cancer was, .8 cm, and the fact that there was nothing found in the lymph nodes.  Before the use of Oncotype testing I would have been told, based on what they found, that the chance of reoccurrence was small and chemo wasn’t needed.  Surprise!

The real kicker was a text from my sister letting me know that her beautiful Cavalier King Charles Spaniel, Reggie, who was 12 and a half, took a huge turn for the worse with his heart issues and they made the very difficult decision to euthanize him.  I was sorry I couldn’t be there to cry with her…

So that’s how my week has been going.  I got to come home yesterday because my echocardiogram and ultrasound of veins in my legs were good and they could stop the heparin drip.  Then to the plastic surgeon and the drain is still in.  I have to get my blood INR tested today and my hair cut so it looks good before it falls out!

I was so tired last night I couldn’t stay awake to see my Chicago Cubs beat the San Francisco Giants and win their NLDS in major league baseball.   I’m reeling from all the events and really exhausted right now so I think I’ll take just a little break from blogging.  The pain meds fog my mind and make it hard to be creative, as you might have noticed…  But I’ll be back in a few days, barring any other stupid complications…  I miss you guys!

 

TMI Thursday, Fighting Like a Girl…

20160822_102208What do you think of my lovely MRI outfit and my selfie attempt?  It was the biggest robe and drawstring waist pants I’ve seen!  Truly one size fits no one…

I’m just starting my fight against breast cancer, hence the title fighting like a girl.  I was at the doctor’s office and they had a wall that people signed with personal messages about their cancer experiences and there was one quote that was my favorite.  It said “I fought breast cancer like a girl and I won!”  So that’s my new motto…

I’ve finished meeting with the surgeons (general and plastic), the genetic counselor, the oncologist and had the MRI — an experience I don’t care to repeat.  That is the noisiest thing, even though they give you earplugs.  But it did show that we’re just dealing with the one area on the right side and it appears to be small.  So it was well worth the annoying experience to get such detailed pictures!

I think I’ve also shared before that I have a genetic blood clotting disorder that makes me more prone to develop blood clots.  It’s something I share with one brother and its called Factor V Leiden.  It’s fairly common and not usually a huge worry, but wouldn’t you know it, my case is more difficult!

I found out I had Factor V because two years ago I developed a very large blood clot in my left leg from my knee into my stomach area and spent ten days in the hospital where they had to do a procedure called trellising to mechanically break up and remove the clot.  They also put in a filter, threading it in through an incision near my collarbone into the vena cava.  It temporarily protects you from a clot moving into your lungs and after your blood thinner starts working well they retrieve the filter.  I was part of a study group for the B Braun filter that is now available.

So the thing is, because I had that really big clot and will have to go off the blood thinners again for surgery for several days, they will have to reinsert a filter before they do my surgery.  Oh, and the best part is you get to inject yourself in your stomach twice a day with a drug to prevent clots up until and after surgery!  And then later, usually within weeks, they will surgically retrieve the filter.

I’ve had a lot of decisions to make about a lumpectomy versus mastectomy, reconstruction if it is a mastectomy, the pros and cons of doing just one side or both sides, the worries about cancer reoccurring, etc.  But as my oncologist pointed out, the fact that I can choose means I have many good options!

And one of the most exciting things I’ve found out about is genetic testing of the cancerous tumor that they will do after surgery which helps you and your doctor’s determine if chemotherapy is necessary and helpful.  Here’s a link to info from The New York Times about the testing that my dear friend Laura from Fountain Pen Follies sent me that explains a fascinating study that’s been going on that will help thousands of women make good decisions about treatment now and in the future.

Thanks for reading, for all your thoughts, prayers and lovely good wishes, and for riding along with me on this sometimes bumpy journey.  I will let you all know when surgery will be and how everything goes.  I may not be writing as much for a little bit, but I will be reading your blogs ❤