Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts

Saturday, April 14, 2012

I have to admit ....

When it comes to this blog, I am a procrastinator.  As I've explained before, I have this thing about talking about myself.  One excuse - I've never liked being the center of attention, and the other is I'm too critical of my writing that when I do write, I end up erasing, rewriting, re-erasing, so on and so forth.  I guess you could say I'm a self-defeater.  But then I guess I could also say that I'm not living up to my end of my adventure by blogging whatever experiences I've been experiencing.  So, here I am, once again, beginning my post with a disclaimer or excuse of why I'm a bad blogger.  
 (Love this little guy)  

Before I go on, I truly do have to apologize & thank all of you who have privately written, asking how I'm doing & offering wonderful words of encouragement.  I've not been a good friend.  I mean to respond back to you, it's just that time gets away from me.  I have good intentions, but I never know what to say because I don't want to come off as a chronic complainer, and I don't want to lie either. 

Many, many heartfelt thanks & my sincere apologies for being neglectful.  Just know, though, that you remembering me does lift my spirits, and I am very thankful for that. 

 
Good news for me ...
 
I had CT Scan recently to see if the cancer drug was working. It's been about 6 months since I began therapy, so I was pretty anxious to know what was up.  It was good to hear that the drug does seem to be working & it seems to be stopping it from running amok inside my body!  YAY! Wonderful news! 

A quick catch up ... 

The tumor in the right breast itself was the size of a baseball.  From this recent scan, the doctors can't tell how much of this 'baseball' has shrunk, or even what size it is today.  I can't help thinking that if I had better insurance or was flush with money we could do another scan to pin point it in more detail.  But, I only have Medicare, for which I am grateful.  I won't complain too loudly.

As a matter of fact, I can't write anything further until I plead with all of you to keep a vigilant eye on Congress.  Don't let them ruin Medicare or Social Security.  There's plenty of good information out there, just don't fall for propaganda.

From my earlier postings, you might remember how I didn't initially understand how far advanced my cancer is.  Funny how things work in your mind.  Some kind of denial, I suppose.  

When the doctor said it was incurable & that I'd have to take medication the rest of my life, I didn't think that was such a bad thing.  I suppose I wanted it to be like a really bad case of toe fungus or maybe like thyroid disease that would require years & years of oral medications.  You couldn't cure it, but you could manage it.

That's it in a nutshell.  That's what I thought back then.  You couldn't cure it, but you could manage it.

OMG!  A revelation!  That is how I thought of it!  This was a case similar to thyroid disease to be treated with a lifelong pill.  I just broke my own heart, because it's simply not true.
 
Last week, I learned from my oncologist that the breast cancer was spread throughout my body more than I initially realized.  It's in both lungs, well, hell, it seems to be everywhere, including in my bones.  But, the cancer medication is doing it's thing, & it's slowed the cancer progression - for which I am extremely grateful.  YAY!

BUT .... 

The drug is coming at a cost to my bones.  To quote a paper my doctor gave me: 
The spread of cancer cells from the primary tumor to the bones (bone metastasis) is a common complication.
The CT Scan showed many dark holes & splotches in my bones.  The doctor has said to be very careful in my daily life & to avoid bone stress, including using the stairs.

I've lost a quarter inch in height since last fall. <sigh>

Pain ....  

My joints are locking - under the arms, fingers & wrists joints, shoulders, hip, etc.  I explained to the doctor it's like someone pouring cement into my joints.  Ewww, what a horrible thought.  My hands are getting bad.  This past week, it's gotten to where lifting a regular size coffee cup with my right hand is almost impossible.  I wear arthritis gloves, & I also massage my hands with lotion, both seem to help a bit.

Because of hip pain, I wasn't getting much sleep, so about a month ago, the kids moved my recliner into my bedroom.  Now, the pain doesn't wake me, & I am sleeping much better.  I do miss curling up in bed, though. 

Besides the pain, are my infamous hot flashes.  

Oh, they are terrible.  I dread warm weather.  Then there's now the nausea.  Fleeting waves of nausea.  
Bisphosphonate Infusion Therapy

My Oncologist wants me to undergo Bisphosphonate Infusion Therapy to help rebuild the bone that is healing from the metastases.  The bones are weak, and have holes in them.  She mailed me info on this therapy; this is what it says:

Bisphosphonate Infusion Therapy is used to treat hypercalcemia, which occurs when cancer cells break down bone & release calcium into the bloodstream.  The spread of cancer cells from the primary tumor (breast) to the bones (bone metastasis) is a common complication.  Bisphosphonates targets cancer cells that have invaded the bone.  It stops these cancer cells from breaking down & weakening the bone & also prevents the abnormal bone growth, which occurs when cancer cells invade the bone.  These new areas of abnormal bone are weak, can break easily, and can cause pain for many patients.  Because it stops cancer cells from breaking down bone, less calcium from the bones goes into the blood stream & blood levels of calcium are prevented from getting too high (hypercalcemia).

Benefits:  reduces bone pain, slows down bone damage caused by cancer, lowers the risk of bone fractures, and reduces hypercalcemia.

Precautions 'before' therapy ....

Because of cases of osteonecrosis of the jaw - it can cause major problems with the jaw bone, it's strongly recommended that all dental work be done before hand.  This is serious.

When I read all this.  I cried.  For the first time, since diagnosed, I cried.  I cried out of fear.  I cried because I feel like the end is nearing for me.  The whole cancer thing is real.  So much for this idea: You couldn't cure it, but you could manage it. 

I have huge - mega huge - dental issues.  I need them all extracted.  My mouth causes me constant pain.  Because of my teeth, I can't have Bisphosphonate Therapy.  If I can't find a way to have dental work done, I'll just have to take my chances & not break any bones.

In the meantime, there are two dental schools in Michigan.  Both downstate.  Not sure if they'd do it for free, or a small fee.  And, I'm not sure if my hip can handle a compact car road trip, but I'm hoping something will turn up while my bones are still in the window of getting healed.

Radiation Therapy .....

The doc also told me she's going to start me on radiation therapy.  Don't know when, though.  She said it will hopefully save my breast.

Surgery ....

Remember how the surgeon said the tumor was too large & not safe to surgical remove?  I guess that's still the case.  No surgery is even hinted anymore.  At least not at this time.

Diabetes Type I ....

Not sure if I've even mentioned this to anyone, but last November I was diagnosed with Type I Diabetes.  This makes me so mad!

Proud mom ....

My son is getting married in September.  My baby!  He's marrying a very nice girl.  They are good for each other.  They complement & they challenge each other.  That is good.


Oh, how I love this Eagle Family.  I have two monitors hooked to my computer.  One is dedicated to the live streaming of mom, dad & their 3 little eaglets.  I laugh at them, worry about them, but one thing I know, mom & dad are old pros & their little babies are in good hands.  Watch them, they're good for your blood pressure.  You can follow them on Facebook, too, if you like.

I found this ....

... the other day, & it cheered me right up.  Merry Christmas - in a few months!


If you all made it with me to the end of this - thank you for your bravery!  I'm hoping I written with clarity, & I hope I didn't bore you. 
Seriously, you should check out the Decorah Eagles.

 

Wednesday, March 21, 2012

The weather is hot & I've got a scan ....

One would think this unusual & delightfully warm & sunny weather we're experiencing here in Northern Michigan would put a smile on my face & a spring in my step.   But it's only making me miserable.

Mid-80 degree temperatures just don't mix with my anti-cancer drug.  In the dead of winter, I had a 2 inch crack in my window & the heat registered closed.  Doing this, I was able to withstand the hot flashes that come from this drug.  They're not even normal hot flashes, either. 

I remember during menopause they were pretty bad & even embarrassing for me at work, but these hot flashes today - well, I told the kids today that if they could see it, they'd see heat waves similar to a road mirage on hot sunny day shooting out from all around my head.

I'm experiencing one right now.  In this heat, it makes me sick to my stomach.  Nausea in waves & vomiting at times, too.


This drug is causing me tremendous pain.  The last time I saw the oncologist I said it's like someone has poured cement into some of my joints.  I can't raise my left arm.  The right arm has it's problems, too.  Now my hands, I think it's the carpal bone, I'm not sure.  The pain is deep in the bone.  It doesn't really bother me until I try to use it, especially when I use my hands to brace myself to rise from a chair or bed.  The pain is so sharp & deep that I really can't use it.  The worse is the left hand. 

How are you suppose to raise an old body out of a chair without your hands?

Now, I guess anyone reading this can understand at least one of the reasons I've not documented my 'adventure'.   Who wants to hear someone complain? 

There's more to write, but it hurts to type, so I'll end this.  I just want to say one more thing.  Today, I'm going in for a scan to see how the baseball-size breast tumor, and lung nodules are doing.  Are they shrinking?  Have the nodules gone away or have they grown or traveled further?   I've been on the cancer drug for about 6 months, so I guess I'll find out, although I don't see my oncologist until April 2nd.

Wish it would snow .... btw, this is March 3, 2012 - just 18 days ago!

and I wish my doctor would prescribe this:
Oh, boy, would I like that drug!  :)

Monday, December 12, 2011

Life-Saving Meds vs Side-Effects ....

From BBC News ...
Breast cancer patients 'stop drugs' due to side-effects



About a third of breast cancer patients stop taking medication because side-effects are more severe than they expect, US researchers suggest.

The Northwestern University team questioned 686 women who were taking aromatase inhibitors as treatment for oestrogen-sensitive breast cancer.  It found 36% stopped their medication because of symptoms such as joint pain, hot flushes, weight gain and nausea.

- snip -

Aromatase inhibitors are given to postmenopausal breast cancer patients to reduce the level of oestrogen in those whose tumours were fuelled by the hormone.  About two-thirds of breast cancers are oestrogen-sensitive, and aromatase inhibitors have been shown to reduce the risk of cancer recurring. 

Information gap
 
Patients in the Northwestern University study filled out a 46-question survey rating their quality of life and symptoms associated with breast cancer and treatment.  They were asked about their symptoms before treatment and at three, six, 12 and 24 months after starting treatment. 

After three months, a third of women had severe joint pain, 28% had hot flushes and 24% had decreased libido among a range of symptoms.  The longer women were being treated, the more reported side-effects.

Those at highest risk of stopping before the recommended five years were those still experiencing side-effects from chemo or radiotherapy.  As a result of the side effects, 10% of the women had stopped taking the drug within two years. A further 26% had stopped by four years.

- More at the above link - 

Hot Flashes

I've already written here on my blog about the hot flashes.  They can be pretty severe; far worse than my menopausal hot flashes.  Luckily, it's cold outside & I keep a nice size crack in the window.  The kids come into my room & complain about the cold.  Once in a while I feel the cold & am amazed at my tolerance level for it.  I don't know how I'll handle the heat & humidity of next summer.   It does worry me.  Yet, something else worries me.  It seems the hot flashes are less frequent.  The doc says having them is a sign the drug is working; I'm petrified having less frequent hot flashes means the drug isn't as effective.

Pain
 
I was in an accident about 10 years ago that left me in constant pain.  I decided to stop taking the narcotics & just use Ibuprofen & Baclofen (for spasms).  All this accomplished was drastic weight gain, & becoming immobile.  I could not function due to the pain.  I had a stool in the kitchen just so I could sit to cook, do dishes, or even to make a cup of coffee.  After walking a few feet, I'd double over in pain.  Literally - and worse than this cartoon lady.  



Well, I am back on Vicoden, and can now function with limits.  I think there are those who make people like me feel uncomfortable about taking narcotics, but they are available for a reason, & if you need it, then you should take it.  Don't ruin your quality of life over some perceived guilt of addiction.  

My oncologist prescribed an aromatase inhibitor for my treatment of estrogen-sensitive breast cancer.  Remember I am post-menopausal, & have metastatic breast cancer.  The surgeon can't safely remove my baseball size tumor, & since my cancer is incurable, the doc canceled the originally prescribed chemotherapy & started me on Arimedex  (Anastrozole).

Today I take my 77th dose of Arimedex (yea, I keep track of each tablet, just so I don't forget to take this tiny life saving pill!) .  Besides those horrible hot flashes, I am in a lot of pain.  Lots of throbbing joint pain.  Even with Ibuprofen & Vicoden!  If I was feeling terrible pain while taking Vicoden, then good grief, how bad is this pain?  It's pretty bad.  I increased my Vicoden which helped.  My primary care physician increased my monthly quantity, as well as increasing the prescription to extra strength.  It has helped.  I also am making sure I take the Baclofen on a regular basis, & that seems to help, too.

Education

It seems to me that oncologists need to listen to their patients, & offer the pain medications if their patient's are suffering.  This drug is a life saving medication.  Which is worse?  A possible addiction or death?  My primary care doc understood.  She & my oncologist said pain was the primary complaint with this drug.

Maybe, too, an explanation on what to expect from this drug should be a part of the patient's treatment.  For me, a cold pack on the back of my neck helps, along with chewing on ice chips, and of course the nice crack in the wintery window.

So ...
 
My latest issue are the hives.  I'm not sure if it's the drug or something else, but the hives are itchy, in various places, and it's no fun!  
Anyway, the above article saddens me.  I don't know if the women who stopped taking their medication had other options; I sure hope so.  I can't imagine stopping a life-saving medication when the other drugs out there can be just as bad, if not worse.  

Hugs to all of us doing our best to stay alive.