When a Chemo Quits Working

So.

Here it is July, and I haven't written anything since April.  I thought it might be time to explain why.

You see, back in April when I was worrying about whether the Taxol was working - it wasn't.  After 2 months of being just under the normal limit number for my CA-125, it went up.  And the next month it went up again, so it was decided that the Taxol was no longer effective on my cancer cells.  Needless to say, I had a minor freakout about it - and I just didn't know how to write about it. First I was waiting for my youngest to graduate high school, then until we told the boys and my folks what was going on.  Then I was waiting until my new oncologist and I made a decision on what to try next.  But it's been too long since I wrote, and I'm feeling the effects.  So here it is.

My new oncologist is a gynecologic oncologist, and she is VERY up on the latest methods/chemos/etc for my type of cancer.  So she decided - even before we realized the Taxol wasn't really working anymore - to take some of the fluid that I'm draining from around my lung and send it off for testing - first to see whether or not there are cancer cells in the fluid, second to see what chemos it responds to.  By the time it was obvious that Taxol wasn't working anymore, she knew that yes - there were still cancer cells in that fluid, and more importantly, she knew which chemotherapies that those cancer cells were responsive to.

The good news is that I have several options.  There are other taxil chemo agents that I can use later, as well as several other drugs.  She started me off with Topotecan three weeks on, one week off, and Avastin on weeks one and three.  Unfortunately, after two weeks, the Topotecan kicked my blood counts into the dirt, so no chemo last week!  I see her next week and we'll decide if we're going to change to two weeks on, two weeks off or lower the dosage and stay on the three week schedule, or whatever else she thinks might work.

It's unsettling.  Coming at the end of a week that included the Oncology Advisory division of the FDA voting against fast-tracking Olaparib for ovarian cancer treatment (hmph) and a delay of an event I had been hoping to get done next month, it was not what I wanted to hear.  It did explain why I was so tired at the end of the day last week.  Anyhoo - that's where I'm at.  I am happy to say that the fluid around my lungs that had been increasing since the end of Taxol seems to be decreasing just a bit lately - so I'm hopeful the Topotecan is making some headway against the cancer.  My scans in June were still clear, so whatever is going on in there is still pretty small.  I'm not getting my chemo free summer, but having a week off every month will be heaven.

In other news - as I said, the youngest graduated high school.  My garden is growing, my flowers are so pretty and just make me smile every day:

We've had plenty of rain this summer so far, and this morning, our new cow dropped her calf!  So we officially have a herd!

(Click to see cows!  And babies!)

 

The hubs and I took a long weekend trip to Cloudcroft for our anniversary last month, and we're just taking things day by day.  I'm going to try and write more often, but to be honest - when I get home from work I'd much rather work in the garden or yard for a bit before I sit down to catch up on Facebook - or reading, much less writing.  We'll see.  

So here I am - doing my best not to just survive - but to thrive.  So far - so good.

My Season of Discontent

The wind is blowing again - as it has been for the last several weeks.  Living in the West Texas Panhandle, I'm used to wind - but it sure is getting on my last nerve lately.

It may be because things are stressful at work.  One of my staff left at the end of March, and I'm having to do part of her job as well as mine.  Part of me loves it - I'm getting to advise students, and I love working with them.  That part of me is having a ball.  But the other part of me - the part that remembers that I'm fighting a sneaky type of cancer - knows that I'm putting in too many hours at work, and worrying too much about whether the students are getting the attention they deserve in a timely manner.  That side is also pretty concerned with how in the world am I going to keep up with my regular job at the same time.

So there is that.

There is also my ever-present worry about my health - when we got my blood test results back at my last treatment, I only had one result that wasn't normal.  Somehow, all of my blood work has improved over the last few weeks.  You would think this would make me happy.  As a worrywart, instead all it does is make me wonder - if it's not kicking my blood counts down, and not making my hair fall out, is it killing the cancer cells like it's supposed to?

Yeah yeah - quit looking a gift horse in the mouth, and just be grateful.  Easier said than done.

Of course, it might be that my finger tips are starting to hurt more and more the longer I receive treatment.  My nails are shot - full of ridges and blotches, and I'm pretty sure a couple of them intend to fall off in a matter of weeks.  It's really not a side effect I'm in the mood for, but it is a possibility with the Taxol.

Or maybe it's because the Dallas Stars are getting their butts kicked by those damn Ducks tonight.

I'm struggling with envy right now.  More and more I am hearing of ovarian cancer patients that were Stage IV at diagnosis as I was - that went into full remission - and there are more and more of them that stay in remission for years at a time.  And I envy them - oh how I envy them.  Remission!  That glorious state of being where you can believe that you have beaten the beast.  That you will not die in a year.  Or two.  Or three.  Instead you will be the miracle...the statistic breaker...the one who lives 10 years and beyond. 

I so wanted to go into a full remission.  When I read those stories I feel cheated.  Why didn't *I* get a full remission?  Why didn't *I* get a year - or two or ten - of remission?  Of life without chemo and constipation and nausea and steroid weight gain and no eye lashes and tubes?  Why why why???

I don't know why.  And I certainly don't know why NOW I'm fighting the green monster.  I didn't spend that first year wondering why I got ovarian cancer.  It was the luck of the draw - and bad genetics.  It is what it is.  It did no good wasting time on wondering why.  I'm not sure why I'm struggling with it now.

I wonder if it's just not my mind's way of avoiding the real issue - what comes next?  I'll be switching to a new doctor and treatment center this summer, and taking a chemo break.  Instead of looking forward to it, I'm kind of dreading it.  For two months this summer, I won't be getting treatment.  The plan is to get my last tube removed, and to get some dental work done, and to give my body a break.  It should be something to look forward to, but all I can do is think about what will happen without the chemo - the last time I had a chemo break, my numbers started going up immediately.  Is it going to happen that way again?  Is switching doctors a mistake?  Will I be as happy with the new treatment center as I was with the one I use now?  Are the chairs as comfortable?  Will they bring me drinks like they do now?  Will they pay as close attention as the nurses do at my current center?

Is all I have to look forward to is a lifetime of chemo and bloody noses in the morning and painful finger tips?

I don't want to be envious of those who celebrate their years of remission.  I want to be happy for them, and look at them as reason to hope.  But somehow these ugly envious thoughts creep into my head instead, and I don't know how to stop them.  I try to be grateful I'm still here - 18 months since my diagnosis.  I've already beaten some odds.  It's my intent to beat even more.  To be one of those that declares I'm Still Here - 5 years from diagnosis!  10 years from diagnosis!  15! 20! 

*sigh*  I hope I'm not fooling myself.

Debbie

Sara. Debbie.  Becky.  Allison.  Amy.  Dr. S.  Dr. L. Dr. G.  Nancy.  Lynn's mom.  Megan's mom.  L.  M.  The sweet lady who likes my scarves.  The man who likes to gamble.  The sweet man who reminds me of Angie's dad from hockey.  The man Monty knew from his old job. The professor from BA who's name I've forgotten.  The man who has had all the chemo.  The sweet lady with the trees.  The lady from WalMart. And myself.

When I was diagnosed, I didn't really know anyone who had ovarian cancer.  There was one lady who was a friend of a friend that I talked to on the phone once, but once I switch doctor's to a regular oncologist, I was just one of many cancer patients with a wide range of types of cancer.  While Sara had some similar symptoms to mine, there are some symptoms that are specific to ovarian cancer - and I had no idea if it was really normal or not.  It took me a long time to find any support groups online, and until I found the message board on Inspire.com, I couldn't find any groups on Facebook either.

It was a lonely time.

I got through it, but when I had my first reaction to carbo this year, I finally met another ovarian cancer patient who was also in her first recurrence.  We both had reactions to carbo on the same day, had second reactions when our doctor tried to de-sensitize us 3 weeks later, and are now currently on the same weekly Taxol/every other week Avastin schedule.  We have treatment on the same day, and odd as it may seem, it's nice to have someone to visit with every week - to compare our lack of side effects, our energy levels, who's hair is growing back quicker (woohoo - I win on that one so far). 

Debbie's experience is different from mine.  Her cancer was a surprise found during a hysterectomy.  It wasn't as advanced stage as mine.  We had the same front line treatment, but she had a little over a year before she recurred. And her recurrence is in her liver and viewable on CT scans - unlike mine that was found via a rising CA-125 and the return of ascites.  They've never been able to see anything on the CT scans.  She's also responding well to our Taxol/Avastin combo - her tumor is shrinking, and she will likely have surgery to remove it in a month or so.  But she's my chemo buddy - and I'm going to miss her when I switch treatment centers this summer.

We share a love of gardening, and living in the country.  We share a craptastic diagnosis.  She's tough as nails though - while I rely quite a bit on my husband and sons to get some of the more strenuous gardening work done right now, Debbie does it all herself.  I don't know how she does it - maybe since she's not working, it gives her more energy to do it.  And while I have gone scarfless for weeks now, she still wears a wig - a great looking one to be sure, but a wig none the less.  She always has all of her makeup on, and actually drives herself home after treatment each week. 

I'm asking that you all add Debbie to your prayer list for a few weeks.  I'd love to hear from her in a month or two that your prayers have led to her tumor shrinking enough that she *doesn't* have to have surgery.  Wouldn't that be awesome?

Where's A Holy Hand Grenade When You Need One?

When I looked out my back door this evening, I had no intention on barrelling out of it a scant two minutes later.  All I wanted to do was to watch Buster amble across the field.  But when I looked out of the back door, I saw him.

The Bunny.

Those who have read my blog for a while know of my deep loathing for those little grass and garden nibbling bastards.  They eat my grass.  They eat my garden.  They nibble on my bushes and garlic and trees.  They dig little holes in my yard.  They are a MENACE and I hate them.

Currently, we have a gap in our back yard fence as the Tree Man is supposed to come and dig up the trees we paid too much money for last year that died in the last freeze of the spring.  He assures us that he coming soon to replace those trees, but until then my back yard is wide open to all sort of predators.

Including bunnies.

So when I saw this latest invader sitting in the middle of my back yard, I did what I do most times I see his marauding compadres - I stepped out onto the porch and told him to beat it post haste in a loud and annoyed tone.  He wiggled his nose at me.  I then grabbed a piece of bark that was on my porch and lobbed it in his general direction.  He hopped to the right - just one hop mind you - and continued wiggling his nose at me.

Obviously, this bunny was not intimidated by a woman with short gray hair and poor bark-tossing aim.

So I turned around, slipped on the nearest pair of shoes I could find, and muttered something about "taunting little bastard - we'll just see about THAT."  I vaguely recall hearing my husband asking if I wanted to scare it off or let him shoot it - but I just grabbed the old mop on the porch and charged out after him.

I would love to tell you how he fled from me in obvious fear - recognizing that I was without a doubt the top of the food chain and that his days were numbered.  But that little SOB leisurely hopped into my asparagus bed and I'm pretty sure stopped to have a snack as I came after him.  He had no fear, this bunny.  And he was right to have no fear, because as I tried to chase him through the asparagus bed I realized that the pair of shoes I slipped on were E's house shoes and were about 4 sizes too big.

Go ahead.  Laugh.  Since you are not in the throes of bunny-homicidal thoughts, you can see what's coming.  You have all the time in the world to realize that annoyed and tired woman + too-big house shoes + cocky bunny leads to only one thing.

Yup - as I tried to chase said bunny out of the asparagus bed, I stepped out of one of the house shoes, tripped over border to the asparagus bed, and landed on my knees.  The bunny made his escape and I - well I sat there in the dead grass, hoped I didn't break anything, and realized that shortly my husband was going to come out and find me on my butt.  *sigh*

Never fear - nothing was broken.  Although my pride has taken a beating, and I'm sitting here with ice packs on my knees and very glad that the Tylenol has kicked in, I'm ok. 

As for The Bunny?  The one who was obviously related to that bunny in The Holy Grail?  The next time when my husband asks if I want to chase it out of the yard or let him shoot it?

That little dude is going DOWN.

(For the record, no bunnies were hurt this evening.  UNFORTUNATELY!!!  But next time he won't be so lucky!)

Tired

I mentioned the other day that I was having a hard time finding something to blog about.  The fact is, I'm just avoiding blogging because I don't have super happy stuff to blog about.  I've been doing chemo since last October, and frankly, I'm tired.

I'm tired of spending every Friday at the cancer center.  I'm tired of being constipated for 5 days out of every 7.  I'm tired of constantly having to wipe or blow my nose due to the Avastin.  I'm tired of the taste of blood in my mouth from all that drainage.  I'm tired of constantly worrying if the chemo is working, if I'm going to go into remission, if that weird pain in my chest another blood clot or a tumor or just a weird twinge.  I'm tired of the cellulite that has taken residence on my thighs because I don't have the energy to work out every day.  I'm tired of having to draw on eyebrows so I don't like a boy. I'm tired of having short gray hair. I'm tired of not being able to sleep more than 4 or 5 hours at a stretch.  I'm tired of having circles under my eyes so dark that it truly looks like my husband tuned me up.  I'm tired of gaining weight, of hot flashes, of food tasting too salty or too spicy, of the constant craving for chocolate.  I'm tired of trying to brave, inspirational, and chipper.

I am so very tired of having cancer.

I know I could have it so much worse than I do.  I have family and friends that love me and support me.  I have a job that provides me with insurance that has made all this treatment possible.  Sometimes I feel like such a whiner for feeling this way.  But even if you're not at death's door, after a while - having cancer wears on you. 

Those who haven't had cancer - or haven't had dealings with someone with late stage cancer - look at me and see that I'm feeling pretty good compared to a year ago and think that my battle is over.  But my battle may never be over.  I may never go into a full remission.  I might - but the odds are against me.  Sometimes I think people don't know how to deal with someone like me - the cancer patient who can't claim they are cured.

I'm not sure I'd want to hang out with someone who just can't do the things she used to.  But I wish I knew of some way to tell the people I don't hear from much anymore that they are missed.  That I'm sorry that I can't just go back to who I used to be.  My life has changed forever.  I will never again be the chick who can party until the wee hours, or that can spend Sunday morning loading a pickup truck with load after load of hay. 

I wish I knew how to tell them that I miss that chick too.

I've said before it's not all moonlight and roses.  I'm not helping anyone if I only post when I'm all happy and chipper.   I would hate for someone to come across this blog and see nothing but unicorns and rainbows and get down on themselves because they are having more blue days than they know what to do with and feel like they're doing this wrong.  There is no wrong - we all have to deal with it in our own way.  And I bet I'm not the only one who gets so damn tired of having cancer.  It helps me to write it out - it's a way for me to figure out why I feel the way I do, and a way to express those feelings and get them out of my system.  If it helps someone else someday, even better.

It's unrelenting, this having cancer thing.  It never goes away.  Not for me, and not for my family.  I wonder if it would be easier if there was any real hope that I could actually be cured.  I'll never really know - I'm to look at ovarian cancer as a chronic disease that I can treat but not cure.  Like diabetes or rheumatoid arthritis.  I'm doing my best to find a way to accept that gracefully.

But damn.  I'm just....tired.

Sara

(In case you haven't noticed, I've had a hard time coming up with something to write about lately.  It's all the same ole same ole lately. So I thought I would share with everyone those that I pray for and why.)

Sara. Debbie.  Becky.  Allison.  Amy.  Dr. S.  Dr. G.  Nancy.  Lynn's mom.  Megan's mom.  L.  M.  The sweet lady who likes my scarves.  The man who likes to gamble.  The sweet man who reminds me of Angie's dad from hockey.  The man Monty knew from his old job. The professor from BA who's name I've forgotten.  The sweet lady with the trees.  The lady from WalMart. And myself.

Sara is married to one of my faculty members.  When he was originally hired, back when I was hugely pregnant with my eldest, I met Sara when she came to town to find a place for them to live when they moved to Mid-Sized City. She brought with her their 6 month old daughter and we bonded over impending motherhood. She had two daughters, and I two sons, and we both loved them like crazy. She had wonderful advice for a new mom, and the sweetest personality.

Over the years, we would see each other at various departmental parties, and talk on the phone when she would call up here to talk to her husband.  I've always thought the world of her.  It's been nearly two years since she went into a hospital to have some tests run to see why she was having some gastro-intestinal issues, and came out with a diagnosis of advanced pancreatic cancer.  When her husband told me, I was devastated, because all I knew was that there was no cure.  I didn't expect her to finish out the year.

I often talked of going to see her while she was undergoing treatment.  Of calling her when she was stuck at home recovering.  But I never did.  I'm not sure why - was it because I didn't know how to deal with her diagnosis?  Was it because I was afraid?  I'm not sure, but I'm so ashamed of the coward I was.

Later that year, when I was diagnosed with my own advanced staged cancer, I was even more ashamed.  Sara called me frequently to see how I was doing, to offer me support as I went through chemo, as I recovered.  She offered me ideas as to what I could eat, and shared that she too spend months sleeping in a recliner because she just couldn't tolerate sleeping in a bed.  She made me feel normal.  She made me feel less alone. 

Sara is doing great right now.  She sees a doctor at MD Anderson that specializes in her type of pancreatic cancer, and for now, her disease is stable.  She is a constant inspiration to me as I go through my own cancer journey, and is always the first person on my list of those I pray for healing.  If you are so moved, would you consider adding Sara to your prayers for a time?  She is a woman of faith, with an open heart.  She doesn't kid herself about what's ahead for her....but the way she handles the day to day and the future to come makes me proud to call her friend.

Our Newest Addition

Everyone - meet Buster.

Buster joined the Digby family a couple of weeks ago, at the start of the coldest weather we've had in the boonies.  He seems to be thriving, and this morning he and his mama were pretty close to the house (comparatively speaking anyway) and I was able to grab a couple of pictures.

As you can see, he's totally black, and still a little gangly.  But cute!  As all babies are.

It's fun to have a baby around the place, even if it's a calf, and someday we'll probably change his name to Ribeye.  I'm really quite pleased with how good a mama ole Steak turned out to be - she had Buster completely on her own, and we didn't even realize that she was ready to drop him until Monty couldn't spot her and it was so cold.  He found the both of them down in our "pond" out of the wind. 

Since Buster is so small, he's already figured out how to just walk under the hot wire fence and escape into the neighbor's pasture to hide amongst the weeds to take naps.  When he does this, Steak just kind looks over the fence every now and then, but grazes nearby.  When we had snow the other day, my poor husband, who was not feeling well, had to suit up in his insulated coveralls and hike out there to get Buster back into our pasture because he couldn't figure out how to get back under the fence. 

Hence the name Buster.  As in "get your silly butt back over here buster!"

Last weekend the boys had to walk our fence to pull tumbleweeds off of it so that the hot wire stayed hot, and that's when my eldest determined we had a little bull on our hands.  Now we have to figure out when to get him "fixed" because we're not equipped to raise a bull!  Nope - I'd like a nice docile steer, thank you very much.  One that won't give us too much trouble when it's time to load him up and well - you know.

It's almost time to attempt to start seedlings again.  My husband is contemplating putting our greenhouse kit together this week.  This would be awesome, because while I am quite proficient at starting seedlings, getting them big enough and strong enough to be transplanted is not my forte.  Part of it is not really having a great place with enough light and enough warmth, plus enough breeze to grow them large enough and strong enough without being too spindly and weak.  It would be so cool to not have to buy any seedlings this spring!

I probably should sit down today and figure out my garden plan.  Since I'm feeling so well with this new chemo regimen, I think I might plant big again.  Plenty of tomatoes, peppers, cucumbers, onions, taters.  I might even try eggplant!  And okra - we skipped okra last year, and squash because they put out so much produce and we weren't sure I'd be up to cooking it all the time, and let's face it.  Okra and squash just don't freeze all that well.  I'm thinking this year I can handle it - as long as I don't let my husband plant too many of them!

It's fun to look forward to gardening again!  I'm thinking that looking through my new seed catalogs this afternoon while doing laundry and watching the Olympics is a great way to spend the day.

My husband just asked me how I was feeling.  I told him I was feeling pretty good all things considered - that's when he informed me that it had been 5 days since we drained from around my left lung.  I would have never guessed - I don't feel like I have anything in there!  We'll drain tonight, but I have a feeling that's going down some as well.  Woohoo!

It's so nice not feeling sick.  Not feeling worn out all the time.  Not having fevers every three weeks!  I just hope that the taxol is still working at this different rate - and that the Avastin is doing it's job as well.  I won't know if I'm still making progress until the 21st.  Until then, I'm just enjoying feeling good.

When I'm not trying to get pictures of this little guy!

The Herd

Well - it's been nearly a week since I had my last chemo.   I've felt good and have been able to work all week.  It's been awesome. 

You know what else is awesome?  We have a calf!  Yes - that's right - the cow formerly known as Steak had her baby this week.  I had hoped to share cute calf pictures with you, but our mama cow is keeping that baby on the edges of our property and it's been too cold for me to walk out that far.  I'm hoping that maybe my husband can get some pictures today as he works on building their barn. 

(Yes - I know we're building the barn after the calf was born, but better late than never, eh?)

Our calf was born at the beginning of the coldest three days we've had out in the boonies, which had us worried to death about it.  We weren't sure that it was staying warm enough with the wind, and that silly mama had them out on the pasture, not in the empty pond where they would have been out of the wind.  But since the calf was up and moving, and the hubs had seen it nursing, we kept our fingers crossed it would make it through the first night, and it did.  So we might not be the worst cattle ranchers ever after all.

I have no idea if we have a he or a she calf.  Since I haven't been able to get a good look at the baby, and my husband stated he had no interest in trying to determine which it was as long as the mama cow is being so protective, I don't know if we'll ever know.  I'm sure at some point it will become more obvious.  I'm just hoping it's before the calf turns into an onery bull and it's too late to make him into a steer!

If anyone has any great advice on how best to care for a mama and her calf, feel to share.  We're clueless and just hoping that the cow formerly known as Steak has good mama instincts.

In other news, the chickens seem a little miffed that the cattle (ha!  now that we have two, it's a herd!) are getting all the attention these days.  I'm pretty sure the roosters were giving me the evil eye when I was out trying to get a look at the calf the other day.  Pfft.  Guess they should have tried harder to provide me with baby chicks last summer, huh?

It keeps crossing my mind how much Evie would have enjoyed barking at the baby.  I miss that dog.

I finished Beth Moore's Believing God and am trying to figure out which one of her books to read next.  I have Breaking Free, To Live is Christ, When Godly People Do UnGodly Things, and The Beloved Disciple.  Which do y'all recommend next?

Tomorrow I go in for chemo again, and most likely my first dose of Avastin.  I'm asking for prayers that I tolerate it well, and that it doesn't cause my blood pressure to go up, my nose to bleed, or my bowel to perforate.  I'm so hoping that I'll be able to feel as well as I did this last week.  Even if I don't, this has been a week of blessings.  I hope your week has been a happy one as well!

Gratitude. I've Got It.

My goodness - what a difference a week can make.

Last Sunday, I was still full of worry and doubt about what was going to happen with my treatment.   I felt pretty good, and was dreading feeling bad this week.  Instead, I'm sitting here feeling pretty darn good today!

Since this new regimen consists of me receiving a smaller dose of Taxol every week instead of a big ole dose every three weeks, I haven't really had any nausea and very little fatigue.  This weekend we have purchased a new RAV4 for me to drive, gotten Christmas decorations taken down and put away, I've gone to church, and out to eat for lunch, worked on laundry and helped eldest son re-organize his room.

I don't think I've had this active of a weekend since summer.

Of course, I didn't do all this by myself.  The boys helped take the Christmas stuff down.  Most of my contribution to re-organizing E's room consisted of me sitting in a chair and suggesting/directing.  But I'm feeling good.  I don't have the discomfort I've had around my torso the last few months.  I'm not constantly tired.  And praise Jesus Halleluah, I'm not nauseous.  I'm able to eat normally.

I don't kid myself.  I know that next weekend may be a different story once I get Avastin.  But today, right now, I think I should be able to go to work tomorrow.  I think that I won't miss but one day a week with this weekly chemo.  I think I just might be able to have a greater quality of life.

Heck - I may be able to nag my children to do more chores if I'm feeling this good!

*gasp* Maybe I'll even get my house clean!

Pfft.  Even if I don't.  Even if all I do is manage to keep up with the laundry and the kids' schedule, I'll be happy.  I'll take it one day at a time.  I'll enjoy every minute of feeling practically normal.  And I'll be grateful for it.

Now - if only that hair will grow back....

Pow! Right in the kisser!

(Praise God from whom all blessings flow.  Praise Him all creatures here below.  Praise Him above, ye heavenly host.  Praise Father, Son and Holy Ghost)

When I first started going to the little Methodist church in Hicksville, I first heard the doxology.  I had heard the phrases before, but not sung. Something about those words seemed to speak to my soul.  I've learned them and sang them and this morning they are echoing in my heart.

Last night I found out my scans were clear - other than the fluid around my lungs, there is no other visible evidence of disease.  This morning, I was told my CA-125 is down to 37. That's just 2 over normal.  I also found out that my insurance has overturned its decision on my receiving weekly Taxol with Avastin.

I am flabbergasted.  And excited. And nervous. And grateful. And terrified.

I won't get Avastin until next week.  This week - right now in fact - I'm going to get a lower dose of Taxol.  Next week I'll get both. Week 3 - Taxol, then both week 4. I've been approved for this regimen for the next 3 months.

I'm getting less anti-nausea meds because the expectation is I'll have less nausea. I may get some of my hair back. The Avastin, however, can cause me to be more fatigued, have high blood pressure, or headaches or nose bleeds.   But we are hoping it will won't do all that.

Three weeks ago after I reacted to the carbo for the second time, I was scared and angry and despondent. I felt doomed.  I started a process that in its beginning was a way for me to find peace with everything, to find a way to be able to go gently if that was to be my future. But also to find out that if I truly believe, if I truly could "let go and let God"  if I would be blessed.

Boy howdy am I feeling blessed.

Some might say that all my good news today is modern medicine at work. That may be, but I can't help but see God's hand in all this as well.  When I was my most discouraged, feeling abandoned, afraid - I called out as better men than I have called out "my God!  My God!  Why have you forsaken me?!"  And even as I started to accept that this is the struggle I've been given, and that it is nothing when compared with the others suffering, no worse than what Christ suffered on a cross all those years ago?

I have blessings rain down on me. As if God is saying to me the words that are the backbone of the Beth Moore study I'm doing:

God is who he says he is.
God can do what he says he can do.
I am who God says I am.
I can do all things through Christ.
God's word is alive and active in me.

Maybe it's just modern medicine.  I choose to believe that I'm being sent a message.  And I think finally it's one I'm ready to hear.

Miracles indeed.

It's The Little Things

When you deal with a chronic disease as I am, eventually you find yourself being happy about the weirdest things.  Sometimes it's having a day without pain.  Sometimes it's being able to navigate your way through a difficult problem at work without having to ask your friend that works in another department 40 questions because your chemo brain isn't blocking all of your intelligence.

Sometimes you're happy that the barium you had to drink for your CT scans put an end to that almost constipation problem you've been struggling with since you started chemo again.

Yes.  That's right.  I said it.  For the first time ever, the barium got things 'moving well' shall we say.  Who am I kidding?  Let's be clear.  I might as well have had a cleanse.  I guarantee they got a good look at my colon today because there wasn't anything in there to block their view.  Nope.  Hell - they could do another one tomorrow and STILL have a great view because  dayum - I'm empty!

See?  It's the little things.

It's kinda bizarre that I'm discussing such things on a public blog.  I never used to discuss such things.  I remember the first time my husband asked about the last time I had taken a crap and I looked at him like he had lost his mind.  Why in God's green earth was he asking about THAT?  We didn't discuss bowel habits in my house growing up.  Unless you were my dad.  I'm pretty sure we all knew way more about my dad's bowel habits than we ever wanted to.  But isn't that true of most families? Anyway - I certainly saw no reason to discuss my bowel habits with my BOYFRIEND - it didn't matter how long we had been dating.

Now look at me.  HA!

But that's the thing - with ovarian cancer, the fear of an obstruction is a very real thing.  I've been SO lucky that I haven't any any bowel involvement with my cancer - no tumors that we've ever known of, no bowel resections during my de-bulking surgery, no obstructions - partial or otherwise.  Many women do have bowel involvement and have to have large portions of their bowel removed, or colostomy bags.  We're constantly on the watch for the signs of an obstruction - because that could mean that the disease is progressing.  That a tumor has worked its way into the bowel.  Or that one has developed and grown large enough to compress the bowel or colon...

So - I'm sorry and I hope you weren't eating when you started reading this.   If nothing else, take the time today or tomorrow and see what you can think of to be happy about that you don't have the nerve to share with anyone else.   Then share it anyway and see if anyone still thinks you're inspiring.

Muahahahahaha!!!!

(No - really - I wasn't trying to ick anyone out.  But if I'm going to be honest, I  might as well be honest about everything, and this is totally a big topic for many of us with ovarian cancer.  That dreaded obstruction is often what finishes us off - eventually there just isn't anything else to be done.  So forgive me for being tickled that for once I don't have to worry about taking stool softeners or fiber capsules for a day or two!)

In other news, the cow formerly known as Steak is eagerly looking forward to the arrival of Son of Steak.  I believe she is also eagerly looking forward to her new half barn that MDH is going to build for her.  At the moment, that barn consists of 9 poles set into the ground, one of which is a good foot shorter than the other two in that particular row because MDH didn't stand outside and watch the men who were setting the poles in the ground.  Now he has to decide whether to try to raise that one pole up a foot, or just to cut a foot off of the other two.  I vote for the cut - not that he always listens to me.

The hubs has also decided that since our Java hens were such crappy mamas, they have a future in our freezer and he will be buying a new breed of chicken to replace them.  As long as he doesn't replace my Americaunas that lay the blue and green eggs, that's fine with me. And of course, as long as he is the one who gets them prepped for our freezer.

Dove continue to line up on our back yard fence and our back yard trees - taunting the hubs who did not get to go dove hunting this year.  He's also figured out just when he can hunt geese and woe unto any Canadian geese that fly too low over Digbyland.  They just might find themselves being marinated in Fred Meske's secret goose sauce!

In another couple of weeks it will be time to start seeds around here for the garden. Every year I start seeds, and every year I'm lucky if 2 out of the 30 - 60 seedlings I nurse make it into the garden.  Or survive the garden.  But this year I'm determined.  I will have heirloom tomatoes!  And cucumbers so I can make pickles!  I will!  Maybe.

So that's what's going on in Digbyland - what are you up to these days?

(By the way - my scans are still clear. Woohoo!)

Miracles

(I completely understand that not all of my friends believe as I do - and as I've mentioned before, I'm down with that.  If you aren't comfortable reading about a Christian's struggle with her faith, feel free to just click away now.  It won't offend me at all.  I just ask that you respect my choice as I respect yours.  This is a part of what I'm going through now.)


Sara.
Becky.
Allison.
Dr. S.
Diana.
Nancy.
Mike from NM.
Lynn's mom.
Megan's mom.
L.
M.
The sweet lady who likes my scarves.
The man who likes to gamble.
The man that Monty knew from  his old job.
The professor from BA who's name I've forgotten.
The sweet lady who had the trees last year that she had to keep in her garage to protect them from the freeze.
The nice lady I met in WalMart who had the cool head wrap.
And myself.

These are the people who I pray for healing every night.  Then I pray for continued health for a slew of others - people in remission, or who are recovering from other ailments.  Not everyone listed up there have cancer - some have other chronic illnesses.  But I pray for them all.

Sometimes in the morning.  Sometimes it's at night.  Whenever I have some quiet time to go through my list.

I also pray for my boys - that they continue to meet good people, and make good friends as they move into adulthood.  I pray they meet women who can love them as they are, and yet inspire them to continue to try to be better people.  Women that will respect them as I hope they respect those women.  That they find a job or career that they love, that makes going to work a joy rather than a chore.

I would love you to believe that I do this every day without fail.  But that would be a lie - I try.  It's my intent to do this every day.  But some days I run out of time in the morning.  And some days I forget to say my prayers before I go to bed.  And some days I fall asleep as I'm working through my list.

I always try to start my prayers with thanks for the day before, or the day that just finished up - to remember to be thankful for the good things that have happened - whether it was checking items off my to do list, or seeing a beautiful sunset.  Whatever I can think of to be grateful for, so that I don't always focus on the negative, the scary.

As  work through this Beth Moore book, I'm learning new things to consider as I pray.  One of those is not being afraid to ask for the big things.  I think a lot of the time I figure it would be presumptuous of me to ask for things for myself - I tend to instead ask for health, healing, etc for my family and friends.  I'm learning that may be the ultimate conceit - a falseness that doesn't so much show how humble I am, but rather my lack of faith.

See where I list myself on that list of people that I ask for healing for?  Why is that?  Why do I put myself last?  Don't I deserve to be a little higher on the list?  Aren't we told as mothers that we should take care of ourselves first so that we are able to care for our families?  Not that we do that.  Nope - it's always worry about the rest of the family first - we'll rest when we're dead.

That's just a wee bit close to home for me.

So I'm working on that - on trying to find a way to work myself up that list.   To accept that my health, my cure, is just as important as anyone else on that list.  To accept that there is nothing wrong with taking care of yourself first.

To accept that it's ok to ask for help.  For a miracle.  For long remission.  For a cure.

To really believe in miracles in this age of science and disbelief.  To have the faith of a child.

Easier said than done. 

2014

Hmm.  I never imagined that my first post of 2014 would be on the 21st.  It's been a weird month for me.  At the beginning of the month, I had another chemo treatment, and we tried once again to give me carbo - extra steroids, and more benedryl - in hopes to de-sensitize me so that I can still get one of the most effective chemos for my type of cancer.  Alas, within minutes of starting the carbo, my tongue started tingling again, my heart started racing, and even though they were watching me and stopped it immediately, my nose swelled shut again.

*sigh*

So - I don't know if I'll ever have carbo again.  And that scares the crap out of me.  My CA 125 only went down 6 points between the last two chemo sessions, and I worry that means without the full carbo infusion, we're not beating the cancer back as much as we'd like.  I haven't re-developed acites in my abdomen, but I still have the fluid around my lungs.  I thought we had that on the run, but the last time my husband drained it, it was significantly more fluid than the previous time.  In addition to all that, I've had much more discomfort around my middle the last few weeks.

Whine whine whine.

Tomorrow I'll be having CT scans of chest, abdomen and pelvis.  So maybe we can see what is exactly going on in there.  I haven't had scans since last October, so I am very curious as to how things look.  I keep hoping that once again it'll be a scan with no new evidence of metastic disease.  Wish me luck.

I've struggled keeping a positive attitude the last couple of months.  Having fevers every time I hit those compromised immunity days every round of chemo is a double whammy of feeling like crap and worrying that the doctors are missing something when they try to figure out what is causing the fevers.  This last time I was prescribed preventative antibiotics in hopes I wouldn't have a fever.   It certainly delayed the fever, and it was just a low grade fever that only lasted a few days, but I still got a fever.  Again.

This constant feeling like crap wears on you.  It frustrates me to no end to only have a few days out of every 21 that I feel like doing anything.  I miss way more work than I'd like, but there are just some days I can't make it in.  I still feel like I'm letting down not only my boss, but my staff and faculty as well.  I've been told that some of my faculty are complaining.  But what can I do?  I'm trying my hardest to be at work as often as I can.  To get as much done while I am in the office as possible. 

I used to rarely miss work.  I rarely got sick, and I had to be pretty sick before I called in.  I wasn't the employee who called in with a sinus headache or because I had cramps.  If I called in, I was most likely running a fever or hurling.  Now I call in because I'm so fatigued I can barely function, or because I'm so nauseated from chemo I can't comprehend trying to drive into town. 

Part of this adjusting to the new normal I guess.  Trying not to assign scary meanings to every ache, pain, lump or spot.  Trying to remember that God's plan doesn't necessarily mean I'm supposed to be his example of grace under pressure - or anything worse. 

Those who know me well know that I have a strong faith in God.  During this recurrence, I've struggled holding onto that.  I've struggled with believing that there are still miracles to be had.  I want to believe that - of course I do.  But I feel like for some reason that's God's answer to my prayers might be no. 

To help with that, I've been working my way through a Beth Moore book.  A devotional of sorts.  I'll be honest - I have it on my kindle because it was free this month.  But working through it these last couple of weeks has been fascinating - giving me a different look on how my relationship with God works - and me questioning if I've been putting enough into it.

For those of y'all who don't buy into God, or who worship a different diety, feel free to move skip all this rambling of God and faith. It won't hurt my feelings a bit.  This blog is an exploration of how I'm working my way through my cancer and my life in general, so there's gonna be some God talk occasionally.

Anyhoo - that's what's going on with me.  As usual, January sucks.  My least favorite month.  Chemo again this Friday.  Not sure what they are going to do - according to my oncology nurse, we'll find out Friday.  I'm not real sure I'm ok with that,  but it doesn't seem like I have much choice.  Keep me in your thoughts, and I hope your January is going well.

I'll just be glad when it's February again.

Pretty Women

The first time I saw this, it overwhelmed me.  It was long before I was diagnosed, before I had to re-evaluate my own self-image as I have had to over the last 14 months.  But the message that Katie Makkai shared at the National Poetry Slam in 2002 was one that literally brought me to tears.

(And this was in the days before my hormones got all screwed up and I started weeping at unexpected moments and at any and all vids or commercials that include servicemen coming home to adoring children.  Jeez - that stuff gets me every time.)

I don't have daughters.  I had always hoped that my brother would have nieces for me - little versions of me with a bit of Russian thrown in from their mom.  It only seemed fair, as my eldest was the spitting image of my brother as a boy - and my youngest certainly had moments that reminded me of my brother as well.  But no - he had to go and have a boy as well.  Hmph.

Katie's message isn't just for the young women who are starting to find out who they are - and what they are pretty amazing at.  It is for all of us.  I hadn't thought about it in years, but a week or so ago, a friend from Austin posted a picture from Katie's performance with a good portion of the conclusion on it, and I remembered.  I remembered the gut reaction I had to it - so I had to go find it and watch it again.

Since then, it has come to mind in odd moments.  Such as this evening - when, as I was in the bathroom, I once again caught a glimpse of my latest self - head covered with a few wispy hairs, eyes with just a few eyelashes left and dark circles that look like some one slugged me three days ago.  I caught myself wrinkling my nose at my reflection thinking "well ain't that purdy" and heard an echo of the video above.

Will I be pretty?  Will I be pretty?  Will I be pretty?!!

Well hell.  I thought I had gotten past all that.

The thing is, it's hard to let go of vanity.  It's no wonder it's listed as one of the deadly sins - once it gets a hold of you, it doesn't want to let go.  I would love nothing better than to not glance in a mirror and start picking apart how I look now.  To not give in to that ritual of self-loathing that anorexic Victoria's Secret models with D-cup jugs have bequeathed to those us not blessed that way naturally (or monetarily). 

Some day I might have granddaughters.  I hope like hell at some point - if I'm not around to do it - that someone points them at Katie's performance above.  I wish for them a society that reveres women that have talent, intelligence and a willingness to work hard instead of those with nothing but a sex tape in their past and a willingness to do anything to be "famous" in their present.  I hope that my sons - and their wives - don't focus on them being merely pretty, but instead encourage them to be "pretty intelligent, pretty creative, pretty amazing."

But never. Merely. Pretty.

(All the credit in the world goes to the amazing Katie Makkai, who inspired this entire post and I don't know at all, but I consider an inspiration for myself - and I hope for you as well.  She is, quite simply, one of my heroes.)

I'm Sure I Don't Know WHAT You're Talking About

There are times in your life when you have to hear what I like to call "hard truths."  These are usually things you don't want to hear - either about you, or your job, or your friends, or your life, or whatever.  But they are truths that for whatever reason, need to be said.  You need to hear them.

It's never easy to hear these hard truths.  Often when you hear them, you react with anger or denial because who wants to believe something unpleasant?  Rarely are hard truths pleasant to hear - if they were, they wouldn't be hard.  It often takes a long time to absorb what you've heard.  Sometimes your denial is so firm that you won't even accept that what you have heard is a truth.  Denying it only hurts yourself, but we humans rarely want to hear - or  believe - the bad stuff.

When I finally found out that my cancer was Stage IV - that was a hard truth.  I didn't want to believe it.  After all - as soon I noticed my bloating stomach, I went to the doctor.  I had the tests run.  Surely it had been found early?  I didn't have the run around that so many ovarian cancer patients have - fighting to find a doctor that will take their symptoms, their feeling that something wasn't right seriously.  Many of them spend months or years begging health professionals to figure out what is wrong.  It's no surprise that after all that time they are diagnosed at Stage III or IV. That shouldn't have been my case, but it was.

After finding out what stage my cancer was, I did what most of us do these days - I googled it.  The statistics were terrifying.  At that point I had to accept another hard truth - I most likely would never be "cured" of ovarian cancer.  I might get to remission some day, but I would spend the rest of my most likely shortened life fighting cancer.  I should start viewing it as a chronic disease because I would never be free of it.

Ouch.  That sucked.  That's not what's supposed to happen with cancer these days, is it?  No - you're supposed to be diagnosed, have surgery/chemo, and then go into remission.  After 5 years of remission, you're supposed to be cured.  That's what so many of us that that haven't been diagnosed think.

Uh - no.  That's not how it works for a lot of cancers.  Including mine.  So I had to find a way to accept another hard truth.  I didn't like it - the truth or having to find a way to accept it and absorb it and to change my way of thinking - but I did it.  Because that is what we do as mature adults. 

I've tried to find ways to learn and grow from every hard truth I come up against.  While my health issues are the hard truths I've dealt with the most lately, I've also had to do it for hard truths at work, and with my family and friends.  Sometimes it just takes a little pouting, and ranting before I take a deep breath and start to get down to the business of processing this new knowledge.  I've tried to teach my boys the art of accepting hard truths - they're younger, so of course it's harder for them.  But I think it's important we *all* learn to hear hard truths - and to learn from them.  To not just immediately discount what we're hearing because we don't like it.


You can't tell hard truths out of meaness.  It has to come from sincerity - otherwise it's just being petty or hurtful.  You shouldn't say a hard truth unless you truly want to help that person.

(It also helps if you wait until they ask.  Blurting out a hard truth out of nowhere isn't helpful, it's hurtful.  And mean.  Like Wil Wheaton says - don't be a dick.)

What about you?  Have you had to hear a hard  truth lately?  How do you find ways to deal with those truths?  Have you had to share a hard truth?  Am I the only one who struggles with saying what has to be said?

I've had to tell people hard truths lately.  It's as hard to tell hard truths as it is to hear them.  It's not fun to tell someone something they don't want to hear, but sometimes that truth has to be said.  I hope those people take the time to really think about what they've heard.  I hope they find a way to learn and grow from it.  They might.  Then again, they might stay in denial and refuse to believe what I've shared with them.  Either way - I pray for them.  I hope they all know that I don't say hard truths out of malice.

I just want us all to do better.  To be better.  Is that so much to ask?

A Little of This, A Little of That

Yup - I'm still kicking.

I haven't blogged in awhile - partly because we have somehow lost the power cord for my laptop.  I know we put it up somewhere, but for the life of me, I can't remember where.  We just recently discovered that the cord for my husband's laptop will work on mine as well, so at least I finally got it charged again.

The other reason I haven't blogged is because I just haven't been my usual cheerful self.  Every time I thought about blogging, it was basically a whinefest, and honestly, no one wants to read that.  So instead I look through Facebook, and read other blogs, and surf through Pinterest, and basically avoid blogging.  Tonight I had to get on my laptop to look up directions for a super secret Christmas project because Yikes!  Christmas is a week away.  I figured while I was on here, might as well ramble a while.

Chemo is ongoing.  Last Friday was my third chemo, and darned if I didn't have a reaction to the carbo out of no where.  It was scary, and no fun, and totally messed up my sleep habits last weekend thanks to the extra Benedryl and extra steroids.  Now my sleep schedule is back on track, but the Neulasta shot I get after chemo to build my white cell counts is making my ankles and knees ache something fierce, so that's made it harder to sleep.  (see?  WHINEFEST!)  My next chemo is scheduled for early January, and I don't know if I'll find out before then what we're going to do about that carbo reaction.  Will they just slow the carbo infusion down? Or are we done with carbo?  What are our other options?  We found out today that no one has done anything about the appeal for the recommended chemo that was denied by my insurance.  I hate not knowing what is going on, and I'm not scheduled to see my oncologist until the same day I'm supposed to have my next round of chemo.  This is not how I planned on spending my Christmas break!

Anyhoo.  That's where we are on that.  In better news, my CA 125 has dropped down to 55, the ascites went away about a week after the first chemo, and we're draining less than 60 mls a day from around my lung.  The chemo is working, and seems to be working pretty well.  I hope we don't lose any momentum.

My oldest son recently moved back home, and we are all re-learning how to live together.  It's hard to remember that he's spent the last year or so not having to answer to anyone, or deal with a curfew.  I'm sure it's hard for him to deal with not staying out all night because his worry wart mama doesn't sleep well until he's home.  We're figuring it out.  So far we've managed to avoid any huge scream fests, so I guess it's going pretty well.  It is nice having him home.  I missed him. 

I'm so not ready for Christmas.  Well - I'm almost ready for Christmas.  I have about 85% of what I need to finish everything up and no motivation to finish it up.  I just pile all that stuff under the tree, and tell myself that tomorrow I'll wrap some presents or put some things together.  So far - no luck.  I'm running out of time though - someone convince me to get going so I'm not doing everything Christmas Eve!

My beloved husband ruined my present for him.  I was so excited - I came up with a brilliant idea of something to get him, something I knew he'd appreciate, but he hadn't thought of asking for.  I had found one at a local store, and had it stashed in my truck.  Then I came home yesterday and damned if he hadn't bought one for himself.  Men.  No idea what to get him now, plus I have to return the one I bought.  Hmph.  If anyone has any brilliant ideas what to get a man who tends to go buy the damn things I WOULD get him for Christmas, let me know.  He may end up with nothing but Christmas cookies.  Or coal.

All in all, things are pretty good.  But going through chemo really messes with my energy levels, and the temps the week after are a pain.  We are hoping that I won't have that this time.  I'm doing my best to enjoy the season.  To enjoy this time with my family and friends.  I hope you all are doing the same. 

Hairology

As I mentioned before, my hair started falling out while I was in the hospital this last time.  It hasn't been as traumatic or heartbreaking as it was the first time.  Honestly, this time it has been just annoying.  Hair is getting everywhere.  I had just had the thought a week or so ago that we were to the point that we weren't really vacuuming up much hair these days since we lost Evie so long ago.  Trust me - as thick as my hair came back, I am certainly making up for it.

I had thought to try brushing my hair out really well each morning and evening, to get all that was loose out and maybe the constant drift of hair around me wouldn't be quite so bad.  I tried that this morning before I got into the shower - hoping that maybe I wouldn't stop up the drain.  Uh - no.  So much came out while washing my hair that all I needed were a couple of little ears and a tail and I would have had a good sized mouse.  Or two.

Ew.  Totally making the hubs clean that up.

When I checked my head after my shower, I realized I now had bald spots, and gave up on the idea of waiting another day or so before having the hubs buzz it off.  Now I have returned to my little old man (only now with receding hairline!) look for the duration.  I kept waiting for the tears to come, but honestly?  I'm just glad my scalp doesn't hurt all the time!

I mentioned on Facebook that I am grateful for perspective.  When this happened last fall, I had such a hard time with it.  But this year, it just doesn't seem like that big of a deal.  Maybe it's because I know it's going to grow back.  Sure - it'll be whiter.  Maybe curlier.  Hopefully still thick.  But it grows back.  If looking like a little old man with a receding hairline is what it takes to get back into remission, so be it.  I'm down with that.

Now I have to decide for Monday - bare head with my buzz and receding hairline, or break out the scarves?  I have a feeling it will be a last minute decision.

Today I'm going to watch Mid-Size University hopefully kick some butt on the football field, and do some laundry.  The hubs wants to cook burgers on the grill one last time before it gets so cold later this week, and we might put up the last of the tomatoes as stewed tomatoes.  I also would like to go out and see what my english peas are up to today.  All in all, it's great to be out of the hospital.

Even without any hair.

Some Like it Hot

Well - hello there!

I honestly intended to blog throughout the week following my return to chemo.  I can assure you that I felt pretty darn good the day after chemo, and up to around lunchtime the day after that.  Then the Emend wore off and as Andy Taylor (the sherriff, not the hot dude in Duran Duran) used to say "whewwww doggy!"  It took me days to recover.  Just when I started to get my groove back, last Friday I started running a bit of a fever.  I was determined to attend the football game because it was Senior Night, and my son is a senior.  I did, however, convince MDH to drive us up there early so we could grab a parking spot near the fence and I could watch the game from the truck.

Saturday morning when I woke up I felt pretty good.  I had had my belly drained on Friday, so I slept wondrfully, but I was a little achy.  Like you are after having a bit of a fever.  After lunch, I encouraged MDH to go ahead and head out to the deer lease and enjoy opening weekend.  I felt fine!  There was no reason for him to hang around the house.

*sigh*

Seriously, he had been gone less than an hour when I started feeling chilled.  The first time I took my temp, it was 100. something.  I had taken a tylenol, so I gave myself 30 minutes for it to take affect, then took it again.

102.5.  Guess who had to call their hubby to come back home to take her to the hospital?  And guess who has been in the hospital since?

For the record, they ran a ridiculous amount of tests, and never figured out what caused the fever.  It was some kind of infection, because my white cell oount was elevated.  At chemo nadir.  But other than a slight fuzziness seen in an xray behind my heart that *might* have been the start of pneumonia, they haven't found anything.  After 3 1/2 days of 102 - 103 degree fevers, tylenol every six hours, and two types of IV antibiotics, the fever started going down.  As of 10 pm on day 5, I am 19 hours without a fever. I'm hoping I'll make it 24 hours, and they'll spring me tomorrow.

The best part (remember - always try to find a silver lining!) of this ordeal is getting to see so many of the wonderful oncology nurses from last year.  They actually put me in the same room I had last year after my surgery.  Some of the ones I loved have retired or moved on, but a huge number of them are still here, and it's been so much fun to see them again.  I've also met a couple of new ones that I like just as well.  Oncology nurses are awesome.

In addition to all this fun (ha!), this morning, the hair on my head started to fall out.  The first time I went through it, I cried.  This time I just laughed, rinsed my hands off and went on.  Of course, it's so very annoying that it loves to attach itself to my electronics - then I try to wipe it off and end up swiping something off my screen.  I feel for the cleaning ladies - as fast as it seems to be dropping, they might have a rug to sweep up in the morning!

I'm crossing my fingers that this week of being in the hospital doesn't push back my chemo.  Currently all my numbers are in the normal range.  If the fever is over (please please please) and non of the cultures grow any critters, I should be ok.  But the oncologist did say he'd have to see how I'm doing next week.  Keeping my fingers crossed!

So that's what is going on in my world.  I had one of my staff bring me some work that I can do up here during the day because oh.my.hell there is only so much HGTV, Food Channel and SoapNet I can stand to watch.  I've made a point to walk around the entire floor and nurses station before I let myself have anything fun from the patient nutrition room.  I'm doing much better, and I hope to hell I never again run a temp of 103 because that's no freakin fun at all!  Hoping your life has been less eventful! 

What Has To Be Done

Today, I start chemo again.

My insurance finally approved the cancer regimen I had for frontline chemo, and right now I am kicked back receiving pre- meds prior to starting carbo/taxol.

The pre-meds they give seem to make me cold. When I arrived, this room seemed to be the perfect temperature. An hour later, I've pulled out my blanket because I'm freezing. It's the meds - they're room temperature and it chills us.

The massive dose of Benedryl I was given is making me seriously sleepy. If I stop sounding coherent that's why.  They have just started the Taxol, which most likely will take 3 hours.  Since it has been so long since my last treatment, I'm supposed to pay attention to make sure I don't have a reaction to it. It's rare but it happens. I just had a hot flash and had to remind myself that those are normal.

I brought my Kindle, my phone and a book to occupy myself. But I have a feeling that I'm going to be asleep. Maybe not too long because I just started Shadow of the Hegemon and I really want to get it read.


Yup. I fell asleep for an hour and a half. I'm trying to wake up enough so when it's time to head home I can drive my car home instead of leaving it at my best friend's house overnight. no reaction which is a good think. 10 days from now my hair will start falling out again. I keep reminding myself to get a picture of my cute sassy do before it's gone.

Next up will be the carboplatin, which is what we're hoping I'm not resistant to. That will only take 30 minutes or so. I'm getting 80% of a normal dose in hopes it won't do such a number on my bone marrow.

So many have sent me support via Facebook today. To be honest, I'm always surprised and a bit humbled by what I read there. I understand in a way. Before I got sick, I never thought I'd handle it well. I hoped I would, but you never really know.  Once it happened, I just did what I had to do. And I just keep doing it. It's not anything special.  It's just doing what has to be done. Trust me - if it were you, you'd do the same. I discovered a long time ago that we're stronger than we think. I assure you - YOU are stronger than you think.  When the tough times come most of us just get 'er done.

We just started the carbo and I'm on the home stretch. I'll be home in an hour or so, and hoping that the nausea is being held off by both the pre-meds and the Zofran I'll be taking 3 times a day. I'm increasing my stool softener for the next few days so I don't get "bound up" as my grandmother used to say. It's the side effect of the pre-meds that no one talks about. The last thing I need is something turning into a partial bowel obstruction. TMI - I know. But I had to find out the hard way. I don't want that for anyone else.

So far, it's been pretty easy. It's so different than the first chemo of frontline treatment. Then I was in the hospital, after discovering I had blood clots in both lungs. This time comparatively speaking, is easy peasy.  I'm so much stronger. And just as determined to beat this crap.

Because that's what has to be done.

Not The Life I Expected

So here's the deal.

I'm definitely recurring - my CA-125 is up to 231.  Way outside of normal range.  Ascites is developing pretty severely.  Yesterday I had 3 liters drained off of my abdomen.  I am averaging about 90 mls a day in what we drain out of the space around my left lung.

Yet I have not yet started chemo.  Because of my insurance.

Look - I know they have to run a business.  And part of that is to have doctors on staff to review things like requests for approval for chemo regimens.  But they need to have doctors that are actually up on the latest developments in the various cancer treatments, and they sure as hell shouldn't be second-guessing on of the top researchers in the field.

They certainly shouldn't take nine days to deny that regimen.  And if they are going to deny that regimen, then they shouldn't take another week to approve the same regimen I was on the first time I had chemo - or request further clinical information.  Honestly folks - my doctor isn't requesting more chemo so that I can lose weight.  It's because my cancer is returning. 

That's where we are.  As of today, my insurance company still has not approved carbo/taxol for my treatment.  My CA-125 has been rising since September, and on October 2nd, nodules were felt during an exam.  Cancer is happily growing inside of me for going on two months now, and because of some random doctor at the insurance company, I don't know how much longer it will continue to run rampant.  My fear is that my most recent CT scan still didn't show any tumors, but just the ascites building, and that they will try to use that as an excuse to delay treatment.  My oncology nurse says I'm scheduled for chemo on Thursday.  I hope they approve it by then.  If it hasn't been approved by the end of business today, tomorrow I will get the name of the person they are dealing with and start calling every hour asking them what the hold up is.  Because folks - this is my life we're talking about here.

Now - before anyone tries to use this as a political issue - stop right now.  This is a health care issue, and there is no doubt in my mind that I would have had this same thing come up 6 months ago.  This is what happens when a business - such as insurance companies - decide to make health care decisions.  While I understand that they feel they are trying to control costs, they are doing so the wrong way.  I am convinced that these types of decisions cost LIVES.  There are people who will not fight with the insurance companies when this happens - I'm not one of them.  But how many people die because some general doctor makes this type of decision?  Health care decisions should be between the patient and doctor.  No one else.  NO ONE ELSE. 

It boggles my mind that this is my life now.  That I am literally going to be fighting an insurance company for my life.  How the hell did this happen?  This isn't the life I was supposed to have.  I'm supposed to be enjoying working my last four and a half years before I can retire from my job and start enjoying grandbabies.  I'm supposed to be getting my garden and flower beds ready for winter, not making sure that I'm walking around enough to prevent blood clots, and getting fluid drained off of my abdomen.   I should be still trying to convince my husband we should take a trip to Cancun, not hoping that I'll be able to go in the early spring depending on where I am with chemo treatment!

Seriously y'all - I've been had.

I can't change it.  Yet sometimes it still seems surreal.  It's hard to accept at times that I have cancer.  Cancer!  Yet I do.  Hmph.

So.  That's where we are.  I'm feeling much better since they drained the ascites off yesterday, a little sore (because ow - having a needle stuck in your side to drain fluid is ouchy even with lidocaine!).  I'm trying to not be too scared, and I'm relieved that nothing yet is showing on the scan.  But it's only a matter of time, so we need to get this show on the road.  Again - any thoughts, prayers, good vibes, etc are appreciated.    Y'all have no idea how much your love and support means to me. 

(And no - I haven't gotten any more senior citizen discounts.  Heh)