Over the river, through the woods and out the other side...

 I had my OHS on January 31 and all went well.  The surgeon sees to think that even though I did have 3 leaflets on my aortic valve, that 2 of them may have been fused in utero or shortly thereafter and I lived with it. Because I had it all my life I never knew I had it until it got bad.  I developed stenosis at a younger age than most people because of that so I guess that was fortunate.

Had a couple of hiccups though. Number 1, my right lung collapsed sortly after surgery.  They inserted a chest tube but for some reason it was not doing the job so the day after surgery I was back in integrated radiology having a new tube inserted.  That my friends was an awful experience because the doctor performing the procedure was not listening to either his nurses, my nurses of me.  It was traumatizing.  Second tube worked though and I was removed to the stepdown until on Thursday and came home on Saturday.

Second, I learned a valuable lesson about pain medication. I do not like it. I tend to try and tough it out. open heart surgery is not the time to do that though. Take the meds folks. You need them. I did eventually leave them behind in lieu of tylenol after I got home but I still had considerable pain. After multiple trips to my very patient surgeon and eventually my radiation oncologist it was decided that the reason that A) my ling collapsed and B) I will still dealing with considerable pain 8 weeks after surgery (higher than they thought I should have and I have a pretty high pain tolerance level) was a direct result of the radiation I received for my breast cancer.  Talk about adding insult to injury. 

I was finally able to go back to my own bed about 10 weeks after surgery and sleep fairly comfortably.  I am 6 weeks or so into cardiac rehab and that is going well. I have about 2 weeks left.  (6 sessions) I am very grateful to be on the other side, This surgery was by far the most difficult thing I have ever done both mentally and physically. I am beyond thankful for my wonderful surgeon and his staff who have cared for me like family. Onward and upward right?

Immediate plans include my first quilting retreat since last November and the both the dreaded first mammogram since diagnosis and the first echocardiogram since surgery.  Here is to a summer not spent running back and forth to the hospital!

Some days are harder than others

It is just a fact.  I have been having trouble going to sleep even though I am brutally tired so I went and got some melatonin.  I took 10 mg on Monday night and within an hour I was out.   It was great...except for the fact that I spent all day yesterday dozing off.  Went to bed a little after 10 last night (without melatonin) and went right out and slept well and am much more awake today than I was yesterday.  I guess that 10 mg is too much for me so I will try half that next time.  Yesterday was rainy and gloomy all day too so that probably didn't help.  Today is still gloomy but not raining so far.  My arthritis pain is off the charts today however and since I am not supposed to be taking ibuprophen I am in a bind as that is the only thing that helps.  It sucks.

I don't recall if I mentioned that I was moved from anastrozole to exremestane for my estrogen inhibitor.  I was in a ton of pain from the ananstrozole and the exeremestane is a lot better for me.  I know they say that getting more exercise helps with this but conisdering that last night walking from one end of the house to the other at a decent pace left me out of breath, I guess this will have to be put off until after my heart surgery.  

I also reached out to the integrated oncology unit at my hospital and I hoping to get in and investigate some alternative pain relief such as massage and acupuncture.  I am very concerned about chest pain after the surgery since I already have quite a bit of pain on occasion from my lumpectomy.  My arm and side of my breast from the surgery are still not right especially when I try to extend that arm.  It is my dominanant arm too which is not helping.

Out with the old...

 and in with the new.  

When I saw my GP in September she recommended I go for a baseline echocardiogram since I had a heart murmur (I have known about that for probably 20 years) and we needed to keep a watch of my chest after having radiation.  I had the echo in early November and calamity has struck again.  I have severe to critical aoritc stenosis.  This meant another battery of tests to make sure that the echo was correct and to see just how bad it is.  Long story short, it is bad.  So as if cancer this year was not enough, I am now looking at open heart surgery in January.

I was given a choice of doing the less invasive TAVR (Transcatheter Arotic Valve Replacement), A bio prosthetic valve (Edwards Inspiris) or a mechanical valve (St. Jude). Kicker is that I am relatively young considering the life expectancy of any of those choices.  Odds are, I am going to end up needing another valve at some point in the future no matter what I choose.  When they looked at the TAVR, I was between the 2 smallest sizes.  If the were able to do the larger size, if and when it failed that only left the smaller one to go in and correct it with which would in all likelyhood make my valve too small to pass the amount of blood I would need. So for me, TAVR is a one off leaving me older and perhaps not as healthy in 10 years or so and facing open heart surgery. A mechanical valve would probably out live me but comes with some serious issues of it's own including living on blood thinnners for the rest of my life. Not a horrendous choice but not one I really want to deal at this stage of my life. (I play with sharp objects like scissors, needles and rotary cutters.)

That leaves us with this Edwards Insipris Bioprosthetic. Bovine Tissue that is treated to help reduce the chance of calcification and should I eventually need to do something more, I can do the TAVR or who knows what may be available in 10 years.  Science is advancing rapidly.

Sounds like a win to me, except for the part where they intubate me,  crack my breast bone in half, put me on bypass, and cut my heart open. Bah. I can do this...but man, I wish I didn't have to.

Aftershocks

 Radiation therapy for breast cancer uses high-energy X-rays to kill cancer cells. Rapidly growing cells, such as cancer cells, are more susceptible to the effects of radiation therapy than are normal cells. The X-rays are painless and invisible.

I finished my radiation treatment a week ago this past Friday.  You know how when you cook something in the microwave and it tells you to let it sit a while before you try and eat it because it is still cooking? Well that is what happens with radiation.  I thought I sailed through these treatments with just a minor bit of skin pinking but apparently I was still cooking.  The rest of this post may be TMI for some but as I primarily write to document my experience, I want to include it.

Monday morning I woke to some tenderness just south of my armpit.  By Tuesday it was dark and bruised looking and very sore.  I also developed a line of irritation under a portion of my breast.  Saw my gynecologist that day and she just said to keep it moist with my Aquaphor.  My breast has continued to redden but not too bad (I have had worse sun burns) and my nipple has turned really dark brown like the spot under my arm and felt like leather. My breast and underarm are very achy and painful.  Last night sleep was difficult as I just could not get comfortable. I am continuing to use Aquaphor, mometasone and  Quiet the Storm Balm from Fabula Nebulae. (I love this stuff, I totally credit it with how well my skin held up for the last month!).  This morning I got up with brown crud all over the inside of my nightgown and discover the dark skin from my nipple of rubbing off.  I am glad that brown leathery suff will go away but it is nasty now and the new skin is very sensitive.  

All in all, things are well.  I am back to sewing on my quilts.  I roasted and froze 5 quarts of tomatoes yesterday as well.  I am still a little tired in the afternoons but eh...no big deal.  I nap a bit if I can, if I can't I go to bed early.  Today is a movie day with some of my girl friends to see Stripes which I cannot believe is forty years old. Since it starts a 3 PM it will be a test to see if I can stay awake since that is my time when I am the most tired. LOL

Heading down the hill

 As of last Friday (the 13th!) I have completed 3/4 of my radiation treatment.  So far other than being a little pink and some minor discomfort, I am doing well.  The doctor is happy and so I am!  Other news from her is not so wonderful.  I had a DXA scan 2 weeks ago and she told me according to my results, I have osteopenia.  That is kind of midway between osteoporosis and normal 30 year old bones.  Considering I am 60 now, it wasn't totally unexpected. Also women are more prone than men to develop osteopenia . We already have a lower bone mass, generally live longer (so our bones age more), and don't get as much calcium as men on average. Oh, and lets not forget hormone changes brought on by menopause. Isn't it wonderful being a woman?  

Since the next step on my path is to start taking anastrozole which is notorious for reducing bone mass, my radiation oncologist is sending me to a medical oncologist to discuss my choices.  I was already on the fence about anastrozole since there are so many nasty side effects but now I really have to think about it.  Tamoxifen has some really serious side effects such as blood clots, stoke, liver damage and endometrial cancer but the anastrozole can cause bone loss and heart problems.  Tamoxifen reduces the amout of estrogen in your body while anastrozole blocks cells from absorbing estrogen so they work in two totally different ways. Lots to think about.  

I guess that is all for now.  I am doing well so I am not complaining.  I will be glad when the radiation treatments are over though!

Peace!

Milestones or Millstones?

- Based on the most recent data, relative survival rates for women diagnosed with breast cancer are:

 • 91% at 5 years after diagnosis 

• 84% after 10 years 

• 80% after 15 years. 

 Stage at diagnosis is one of the most important factors affecting prognosis. Five-year relative survival rates for breast cancer are: 

• 99% for localized disease 

• 86% for regional disease

 • 27% for patients diagnosed with metastatic disease. 

https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf

I think any cancer patient will tell you that dealing with this disease is best tackled in steps. Mammogram, ultrasound, biopsy, diagnosis, genetic testing, surgery, recovery, radiation, recovery, Aromatase inhibitors...that is the traditional path that I am on.  I was fortunate I did not require chemotherapy because it does not appear to have spread and I am not HER2+. I opted for a lumpectomy based on those results as well and the fact that my genetic testing did not indicate any of the known breast cancer markers. All these things make my recovery quite a bit easier than a lot of others and I am grateful for that. But just because it is easier does not mean that it is easy.

Last week on Friday I hit the marker of being halfway through my radiation.  As of today I have completed 12 of 20 doses.  I am having external beam radiation.  Radiation is quick, it only takes a few minutes but it is 5 days a week for 4 weeks.  On Mondays it takes longer because they have to take X-ray films to be sure the radiation is hitting it's mark.  On Wednesdays it takes longer because after radiation I have to meet with the radiation oncologist to address any issues I may be having. Then you also throw in a DXA scan, CT sim for the boost treatments, virtual sim for the boost treatments...you get the idea.  For those 4 weeks it is roller coaster.  Then add in that one of the biggest side effects of radiation (after skin issues) is exhaustion.  That is where I am right now.  It is summer and there are a ton of things I would like to be doing now but either I shouldn't (being in the pool during the day) or I am just flat out too tired to.  Yesterday, I stopped to pick up a few groceries after my treatment and by the time I got home, I was so tired that I slept for an hour.  Making dinner wipes me out.  I have been making quilts up until now and I haven't even touched last week's block because the thought of having to get out all my quilting paraphenalia is beyond me.  I hate it.  I know it will pass but I hate it.  

Here’s a good analogy for understanding the role of radiation therapy after surgery: “If you drop a glass on the kitchen floor, you must first sweep up all of the big pieces of glass and throw them away — you can think of breast surgery in this way,” says Marisa Weiss, M.D., founder and chief medical officer of Breastcancer.org and director of breast radiation oncology at Lankenau Medical Center. “Radiation therapy is like vacuuming the area after you sweep, getting into the corners and under the furniture, to get rid of any tiny shards of glass that might be left behind.”

My prognosis is good.  According to the above stats, I have an 80% chance of still being here in 15 years.  By that time my youngest grandson will be graduating high school. Good lord! My oldest granddaughter will be 27! (Yipes! I need to quit thinking about that!)

So I will get up every day for the next week and a half and do as I am supposed to.  I will take my naps. I may even get a massage! If being tired is the worst I have to deal with from this then I can deal.

Week one in the books

 Having a first-degree relative with breast cancer, like a mother or sister, puts you at higher risk. Although not frequently seen, having a genetic mutation, such as carrying the BRCA1 or BRCA2 gene, two genes linked to breast cancer, also puts you at higher risk.Being a woman and getting older are the main risk factors for breast cancer. Studies have shown that your risk for breast cancer is due to a combination of factors. The main factors that influence your risk include being a woman and getting older. Most breast cancers are found in women who are 50 years old or older.

As of 10:30 this morning I have had 5 of 20 doses of radiation.  I also had a DXA scan this morning.  That was a very easy non-invasive test that took all of maybe 20 minutes or so.  That is in preparation of the next step on this pathway which will be aromatase inhibitors which is helpful in my case because my particular cancer is 98% estrogen positive.

In postmenopausal women aromatase inhibitors stop the production of estrogen. They work by blocking the enzyme aromatase which turns the hormone androgen into estrogen.  That means there is less estrogen available to stimulate my estrogen hungry breast cancer cells.  There are three aromatase inhibitors, Arimidex, Aromasin and Femara.  I am scheduled to take Arimidex (anastrozole).  Unfortunately, one of the numerous insidious side effects is bone loss, hence the DXA scan to establish a base line.

As I said, there are a number of nasty side effects and it has caused me to question seriously whether it is even worth taking them.  The problem is I cannot find a specific percentage of how much it can reduce my chances of a recurrance.  I have read everything from 6-10% reduction to 50% reduction over 5 to 9 years. the current projection according to my doctors is that if I take the AI for 5 years I have a 6% chance or less of the cancer recurring in the next 10 years.  I guess what it will come down to is what if any side effect I experience and how well I can tolerate them.  Of course if I don't respond well to the first AI there are 2 others. There is also the chance that in 5 years or even 10, someone will come up with something better.