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.

Decorah Eagles ...

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.

 

My adventure continues ...

I have a confession to make.  I've never really paid much attention to breast cancer.  As a woman, I'm sorry to admit my avoidance toward being more aware.  I wasn't entirely ignorant, and I did/do care.  I just didn't understand it as well as my contemporaries.   

When I was diagnosed with metastatic breast cancer, my friends instantly understood the degree of trouble I was in before I did.  

I didn't expect to start chemotherapy so soon after diagnosis, but the surgeon determined the tumor, about the size of a baseball, was too large to safely remove. even as a mastectomy.  He recommended neoadjuvant therapy to hopefully shrink the tumor so later he could safely remove the breast, or better yet, just remove the tumor.

I had to immediately psyche and prepare myself to accept that dreaded toxic medication to be pumped into my veins.  If it meant a cure & a longer life, I was willing to hang my head over the toilet, nauseously puking my ever lovin' brains out.   I so dreaded and so feared the chemo, the sick stomach & the vomiting.  I cannot articulate how much all this troubled and scared me.  

So here I was, all prepared for my first bout of chemo and figuring I'd be bald by Halloween. I ordered headscarves and knitted caps for my future bald head from eBay.  My friend,  Terri, joked and encouraged me to be either lollipop'd Kojak;  Sinead O'Conner;  kick-ass Natalie Portman (V for Vendetta); or get my ass kicked & be Charlie Brown.  I was on my adventure, and the first stop was Halloween.

The day before my first chemo appointment, my oncologist  canceled the chemo & said we needed to talk.  She had the results from the Bone Scan & CT Scan that were performed just a few days before.

This is where everything went off the rails for me.  My doctor explained the cancer isn't just confined to the breast, but has traveled to my lungs.    It had metastasized.  It is incurable.  This changes everything, I'm told.  The chemotherapy is out - for now, but there is a drug that I will have to take the rest of my life.  This drug is used only in post-menopausal women, & it should shrink the tumor.

My reaction?  I wanted to shout "Yippee!"  No chemo for me!  No tummy aches! No vomiting over the toilet!  I remember the funny look the doctor had when I said this was a blessing in disguise.  Pills over chemo.  Yep, that was good news to me.

It wasn't until the drive home that it began to hit me, though, to be honest, it took longer than that to believe it.  

I am dying, and there's no cure.  My doctor told me during my last visit that she doesn't know how long I have.  She told me of a patient of hers that is 70 who asked her recently, as well, and the only answer the doc says she can give, is when the drugs stop working.

I'm not so sure why I wrote all this, most of it has already been blogged.  It could be that I'm trying to get a better grasp.  Right now I feel like I'm cheating, even though I'm not.  I know I am very sick, but refuse to accept it.  There is a difference between being positive and refusing reality.  I'm not so sure where I'm at, and to tell the truth, I'm not so sure I have to know. 

I recently blogged that I believe the tumor is shrinking.  I think that is wonderful news.  I'm hoping it's shrinking the cancer that spread into my lungs, too.  

There seems to be some good news on my cancer drug, anastrozole, (Arimidex). 

I confessed at the beginning of this post my ignorance to breast cancer.   But there's a lot of information out there on the web.  My doctor told me to be wary of what I read; and that she felt comfortable if I stuck with the Mayo Clinic and the National Cancer Institute. Below, from the National Cancer Institute I thought I'd add information on a couple of the tests one may need after the initial diagnosis.  I've included only one stage, and that is Stage IV.

Don't get me started about the hot hot flashes.  Oy ...

Staging

If the biopsy shows that you have breast cancer, your doctor needs to learn the extent (stage) of the disease to help you choose the best treatment. The stage is based on the size of the cancer, whether the cancer has invaded nearby tissues, and whether the cancer has spread to other parts of the body.

Staging may involve blood tests and other tests:

• Bone scan: The doctor injects a small amount of a radioactive substance into a blood vessel. It travels through the bloodstream and collects in the bones. A machine called a scanner detects and measures the radiation. The scanner makes pictures of the bones. The pictures may show cancer that has spread to the bones.
• CT scan: Doctors sometimes use CT scans to look for breast cancer that has spread to the liver or lungs. An x-ray machine linked to a computer takes a series of detailed pictures of your chest or abdomen. You may receive contrast material by injection into a blood vessel in your arm or hand. The contrast material makes abnormal areas easier to see.
• Lymph node biopsy: The stage often is not known until after surgery to remove the tumor in your breast and one or more lymph nodes under your arm. Surgeons use a method called sentinel lymph node biopsy

These tests can show whether the cancer has spread and, if so, to what parts of your body. When breast cancer spreads, cancer cells are often found in lymph nodes under the arm (axillary lymph nodes). Also, breast cancer can spread to almost any other part of the body, such as the bones, liver, lungs, and brain.

When breast cancer spreads from its original place to another part of the body, the new tumor has the same kind of abnormal cells and the same name as the primary (original) tumor. For example, if breast cancer spreads to the bones, the cancer cells in the bones are actually breast cancer cells. The disease is metastatic breast cancer, not bone cancer. For that reason, it is treated as breast cancer, not bone cancer. Doctors call the new tumor "distant" or metastatic disease.

• Stage IV is distant metastatic cancer. The cancer has spread to other parts of the body, such as the bones or liver.
• Recurrent cancer is cancer that has come back after a period of time when it could not be detected. Even when the cancer seems to be completely destroyed, the disease sometimes returns because undetected cancer cells remained somewhere in your body after treatment. It may return in the breast or chest wall. Or it may return in any other part of the body, such as the bones, liver, lungs, or brain.