Wow - did I ever overestimate myself.

In the last post, I said how I was doing better and getting stronger.  I way overestimated myself.  Yesterday, I picked up the kids for a dentist appointment.  I had an appointment that was going to overrun the dentist appointment.  So my mom met me at the dentist office so she could take the kids and I could go to my next appointment.

I went to my next appointment, got petrol for my car and went to CVS pickup a prescription and then home.  I came home crying, overwhelmed and tired to the bone.  I have had some kind of cold that I have been fighting for way too long.  I felt like my Rheumatoid Arthritis was overtaking my body as it does when I am stressed.  I was falling to pieces.

Thanks to mom - the kids had food for dinner.  I felt I could not do one more thing.  I was at my wit's end.  I did not even do that much - but it took everything out of me.  I am almost three months out past my big kaboom on June 2nd when I had sepsis.

Really, when is it my turn to get stronger?  This is taking all I have in me and more.  The doc had told me that most patients with sepsis stay in the hospital for at least 2 months - but I am even past that point.

The fatigue is overwhelming.  Some days I can sleep for a good 18 hours and then when I do wake up, I am in a fog for at least an hour.  I feel like I am sleeping my life away but there is nothing I feel I can do about it.  When does it end?  When do I get to feel close to normal?  I have let so many things slide that need to get done.  I just want my turn to feel awake enough to get it all done.  I will have to wait and see.  I need to get an appointment with my internist - maybe they can help.

Please pray for strength and awareness.


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Eleven Years Ago

Eleven years ago today, my ex-husband and I were trying desperately to get pregnant.  We did 7 cycles of IUI and all ended in failure.  I swore I would never do more than that.  But I was desperate to have a child.

We started the IVF process.  At the time, I was working insane hours.  I was emotionally beat up by all the failures to get pregnant.  But, I was on a mission.

I was doing all the shots that were used to make your body produce as many eggs as possible.  My body created 7 - pretty low number for the process.  They harvested the eggs and introduced the sperm to create the embryos.  After the first day, 2 or 3 of the embryos broke down and were gone.  They called the next morning - 48 hours after creating the embryos and told me to hurry to the office to have the remaining four embryos implanted into my uterus.  One of the four was breaking down but the remaining three looked pretty good.  They typically transfer on day 3 or 5.  But, they wanted them in my uterus asap to hopefully stop the deterioration of the remaining embryos.

Back track one day to 9/11.  I went into work and one of my coworkers said that a plane had hit one of the towers.  I thought she was joking - unfortunately she wasn't.  It paralyzed the office.  We all went up to the boardroom to watch the events unfold on a huge (wall sized) TV.  It was unbelievably sad.  All those lives lost - for what?

So back to 9/12.  I called my ex-husband and told him to haul butt to the fertility clinic as they decided to transfer the embryos into my uterus early.  I remember distinctly lying on the table waiting for the transfer thinking what kind of world I was bringing these children into.

They transferred the four embryos.  The fourth embryo was already breaking down so it probably would not be viable. My chances to get pregnant were like 25% and then of that percentage it was only likely to have one embryo take.  Then the percentages went down from there.

Seven days later, I peed on the pregnancy stick and it was positive!  I think I must have taken at least 10 other pregnancy tests to "just make sure".  We went to the doc appointment a couple of weeks later.  They did a pregnancy test too - positive of course.  Then they did an ultrasound to see how many babies were in the making.  Three heartbeats in their distinct sacs. Thus, the triplets were there!  I was so ecstatic.  I looked back at my ex-husband and he was white as a sheet.

After the ultrasound, we had a meeting with the fertility specialist.  He discussed selective reduction due to it being a high risk pregnancy.  I was upset but didn't let it show - how and why could I decide which baby to take????  Of course, we didn't take that course of action.

Every year, 9/11 and 9/12 conjure so many emotions in me.  Amid all the death, I was giving life to three beautiful children.  Every year, I think about those days.  I remember the next morning calling my sister.  We were laughing and crying about having triplets!

I feel so fortunate for all the brave souls who died that day and all those who worked tirelessly trying to find survivors among the wreckage.  I also feel fortunate for the three little beings that my ex-husband and I created.  Miracles as well as sadness all around me.

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What people don't see

Recently, I have been out twice.  I had a great time.  Nice to be out of the house after the big kaboom at the beginning of June.  What I didn't realize is how much it takes out of me.  I am probably at about 70% of what I was before June 2nd.  And before that I was probably only at 60% of what I was before this whole cancer nightmare started.

When people see me, they always say how great I look.  And maybe I do - I put on a little makeup to give a little color to my face.  I am also appreciative of the compliment.  They see the cast and the port.  What they don't see is the amount of pain meds I am on to even feel okay enough to go out.  While I am out, I do not take any meds as I will be driving.  Also when I go out, I don't drink anything other than diet coke.  Just can't do it.

I always think - I can do anything I want.  But when I do, my bladder gets aggravated and spasms, my broken arm aches and I wear down quickly. 

What people don't see or don't want to see, is that I am a sick person.  It is even hard for me to admit that I am not at 100%.  If I don't stay laying down and resting all the time, my body rebels and that is when I get the hard reminder that I ain't what I used to be.

Just want to be normal - or what my docs say is to create a new normal definition for myself.  It is just so hard to do.

I guess at the end of the day, I rather people see the old me.  I just wish I truly was the old me.

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A Miracle

I don't know how or why - other than prayers from all my prayer warriors.  But here is how it goes:

I left my employment with my former employer in March of last year. My COBRA was the standard 18 months.  The only way to extend it is if you notify them within 60 days of the month following the end of your employment that you are disabled and are unable to work.  This would extend my COBRA to 26 months.

So, I thought that at 9/30/2012 COBRA would expire.  I was sweating bullets as I needed a certificate of coverage so that I could enroll in the Texas Insurance Pool until I was eligible for Medicare which becomes available after 24 months from the disability approval date.  I was nervous because of all my medical issues and the cost of meds that I am on.

My bank account was swept for my September payment.  Me - being type A personality and nervous as heck, I called the company.  I wanted to get that certificate as soon as possible so that I wouldn't have any break in coverage and just have the insurance change.

When I called, I was dumbfounded by the information I received.  The administers of COBRA told me that they had received a fax dated 5/4/2011 stating I was disabled and therefor eligible for 26 months of coverage.  I was so relieved to say the least.  I wracked my brain trying to remember if I faxed it in.  I could not fathom that I had because it was during the time I was basically in the hospital from the end of March 2011 through June 2011.

They call the extended COBRA "OBRA".  The cost of COBRA is 102% of the normal premiums and that OBRA was 150% of the normal premiums.  I didn't care - I have coverage until I am eligible for Medicare. 

The curiosity got the best of me.  As I said, I had no recollection of faxing in anything as I was so sick during that time.  So I called back this morning to see if they could tell where it was faxed from because I have a printer with a fax function.  But it wasn't from my number.  It landed on the right desk at my former employer and they faxed it in.  I am eternally grateful. 

I truly believe that your prayers helped make this happen.  Thanks for all your prayers!

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Happy Labor Day!

I was able to take the kids swimming!  I feel like a grownup now that I am driving again.  It is a little tough to turn with my right arm but otherwise all went well.  I can't get in the water - but I sure wanted to!

Hope all of you had a great Labor Day weekend and were able to spend time with your family and friends.

I am holding my own these days.  Today wore me out - but on normal days when I am on the couch all day, I do fine.  If I am up and about, my bladder and my arm complain mightily.  But I have meds that can control it - just can't take them if I drive. But took them when I got home and things are starting to settle. 

Matthew took out parts of his two front teeth for the third time.  Gotta get that fixed.

That's pretty much all.  Pretty boring these days :)  Better than the alternative!!!

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Isolation

Cancer is an ugly thing - I think we can all agree on that.  No matter what type of cancer it is - it takes so much and some types sooner rather than later. Just not fair.

Then the treatments - a whole other set of issues.  I can only speak to mine but some stories I have read just tear at my being.  Like children with cancer.  Or women with ovarian cancer that is almost always typically found too late.  Or brain, bone, pancreatic etc. - all so ugly.

I have been thinking a lot lately about my own cancer and how the treatments have dramatically changed my life.  I was diagnosed at 41.  At that time in my life, I was working a tough full time job, raising 8 year old triplets and going out with my previous boyfriend (most of my free time) or going out with friends.  Prior to that diagnoses, I had some surgeries due to my arthritis but all pale in comparison to what cancer has done.

I have a good attitude (most of the time) about it and a strong will to live.  But life has slowed way down and changed drastically.  No Friday happy hours, no eating out with friends, or eating in with my family and no boyfriend.  Every once in awhile, one of my kids ask if they should set a plate for me.  Breaks my heart.  And at the times I say yes, they get so excited.

I haven't (and now can't) worked since March 2011.  I have had more ambulance rides than I could count and never would have dreamed of.  Surgeries, shrunken vagina, can't eat, diarrhea if I do eat, haven't driven since June when I broke my right arm, scared waiting for results of tests, hate going to my oncologist more often than the three month follow up for the first two years after the diagnoses and on and on.

I am not looking for sympathy.  I have accepted it.  Well most of it.  One other point, I have always been pretty much a loner - so some of what I say is on me.  I had my family, a boyfriend, a few very close friends and interaction with coworkers.  It was enough for me.

With all that said, my perception and priorities have changed dramatically.  Still a loner. But my family is sooooo much more important than boyfriends, Friday night happy hours or eating food: they are my world.  I always said that before - but I didn't really understand what it truly meant until I almost lost it all a couple of times.

Sure,  I want parts of it back.  Prior to breaking my arm, I would spend a couple of hours with a very good friend of mine on the Fridays that my kids were with their father.  And I will get back to that once I can drive again.  I would like to go out but fatigue stops the "like" to not gonna happen.  Such is life.  I have what I need - my prayer warriors, my God and my family.

But at times, I feel isolated.  Some my own doing and some not.  It hurts - but a smile from one of my children or a laugh with my mom helps a ton.

Seeing arm doc Tuesday.  I will keep you posted.  BTW - I guess the swelling in my right arm had gone down.  It was after a nights sleep.  The compression cast fell down to my lower arm.  Looks like I will have a crooked arm.  But I will wear it proudly just like all my other battle scars.

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Out of the mouth of my 10 year old Sarah

Today, my mom came and got us to take us shopping for backpacks, sneakers and the rest of school supplies.

As we were driving out of the neighborhood, I was reminding the kids of the limits I had set for the prices of the shoes and backpacks.   If my mom would have taken them without me, the sky would be her limit.  We were talking and discussing who could talk whom out of things/into things when it came to shopping.

My daughter quickly added that my mom was the only one who could talk me out of things and that she and her brothers could talk me into anything.  Sad but true - they just wear you down until you give in!  Not the best parenting - but she called  a spade a spade.

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