Monday, October 31, 2011

Happy Halloween!

Hope all you and your goblins are having a great Halloween.  Mine are trick or treating while I man the door (yes they are with responsible adults). 

Today has not been a good day.  My bladder cystitis is rearing a very ugly fight and the medicine is loosing.  Why are some days just like that?  Wish I could understand it better.

I ate a fajita this weekend - bad, bad mistake.  But I couldn't help it - sometimes I just have to eat something even though I know it will go right through me with the strongest of meds to make it not go right through me.  Funny thing is, I really (used to) like to eat.  Most days, eating doesn't even cross my mind.  Go figure - forever on a diet prior to all this and now presto - no more diets.  Don't hate me - you wouldn't want to walk in my shoes for a day.

But regardless, I am happy.  I have accepted the hand dealt.  A person asked me last week: "Ten years ago, would you ever have imagined your life would be this way?"  My answer was a resounding no.  But I am not the only one with health issues.  There are those with much greater health issues so much so that mine would pale in comparison.

So be happy with what you have (even if you can't eat), and enjoy what you can! And no, I am not always this positive - maybe my kids' Halloween excitement rubbed off a little on me.

More later-

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Wednesday, October 26, 2011

Oncologist appointment and other musings

Went to the Oncologist today and had the best appointment ever.  Didn't have to wait for the doc.  Didn't have to even see the doc.  I spoke with Susan who is a RN in his office and is super helpful and nice.  She went over the biopsies with me and answered a few questions I had.  He was not able to get clean margins on one of the outer lesions.  The inner lesion is not CANCER!  It is still in the precancerous state. I still have to have an outpatient laser procedure where he will try to get  everything.  Still worried about what he said about getting a fistula - but decided not to go there today.

Mom went with me and ran errands with me - huge help!  We were laughing and sometimes crying about how sick I have been and some of more memorable hospital visits. 

On one of my hospital stays, I had a male nurse.  No biggie - until he asked me to drop my drawers to make sure I didn't have bed sores.  Creepy.  I told him I didn't - I was completely lucid and knew I didn't.  I should have asked for a female nurse to come in.  But I wasn't thinking - I was creeped out and just did it.  He was my nurse another time - but more on that later.

On my second intestinal blockage, they were still trying to avoid surgery because it is a difficult one.  When I went in to the ER, I was so ill.  Every smell killed me.  I was put in and ER room and an NG tube was ordered.  Hate them!  The nurses wanted to use the opposite nostril than the one used before.  They struggled with it and then went to the other side.  They couldn't get it in to save their lives.  The ER doc came in and shoved it up my nose and down my throat - blood everywhere. Docs must have something in them that makes them able to do stuff like that - I couldn't. 

Also on this visit - still trying to avoid surgery, they took me to radiology for a scan of my intestines.  I thought it would be a quick in and out.  No - I laid on a hard table for four hours.  During that time my back was killing me and I was sick as a dog - no fun.  My mom came to visit and they sent her down to where I was.  They were giving me IV contrast so they could pinpoint the blockage.  It is also a highly active med that makes you go - make that run to the bathroom.  Second blockage solved!  Try getting off a table that is elevated, hooked up to IVs and trying to make it to the restroom.  Not fun.

On the third blockage when they finally decided to do the surgery, they had me all set up for a beautiful room (per my mom).  I don't have any memories of it as I was just coming out of recovery.  My pulse runs very high at a resting rate- usually about 120.  The doc was concerned about that so she sent me to a more intensive care unit.  My first night, my roommate was an elderly woman who didn't say much. During this time I had nothing to say - I was trying to stay still as possible to keep the pain at a minimum.  Also the pain was so intense, I really had nothing to say at all.

The elderly women was released and I got a new roommate - with a huge personality.  I remember the first night the nurses were not answering her call button fast enough - she really needed to pee.  Then she started screaming for them.  Finally, she decided to get out of bed and peed on the floor!  I had her for at least three days.  She was also a cancer patient - but still.  She kept me somewhat entertained while she was there - she never shut up.  I think she got discharged before I did - thank goodness because at this point I was asking to be transferred to a new room.

Also remember creepy nurse, he was also on some of the shifts where I was his patient.  He avoided me like the plaque.  I did not mind at all. 

More later -

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Tuesday, October 25, 2011

SS Disability and Medicare (?) and dreading Oncologist in the morning

God is good and took a great weight off my shoulders and I was approved for Social Security Disability.  I found out today that once you are approved for disability (for very good medical health related reasons) that you are not eligible for medicare for 24 months.  How does that make sense?  You are disabled due to health issues but cannot get affordable medical coverage until 24 months later?  Maybe the government is hoping you will die within that 24 months due to the illness that got you eligible for disability.  I am currently on COBRA but that has an ending point.  I don't think I will be eligible for medicade either due to assets 401K, home etc.  Will have to explore every option out there - but really who wants to cover a cancer patient unless said patient pays out the wahoo.

Oncologist in the morning.  Will be finding out pathology results and what comes next.  DREAD!  I will keep you posted.  Thank you for all of your wonderful comments on Facebook and the continued prayers.  More later -

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Thursday, October 20, 2011

Reading glasses, SS Disability and Excitement of the day

Today was a big day.  Made me feel much, much older than 42.  I got my first pair of reading glasses - got tired of reading with one eye closed.  Also helps with reading text on my IPhone (of course most important of all!). 

I had applied for SS disability - It got approved!!!.  What a weight off my shoulders!  There is truly no way I can work right now.  I am in the middle of almost every medical thing you can think of and don't feel good most days.  I am so thrilled that I can keep my family going without moving back in my mom's house.  Which she graciously offered - but rather not if possible.

The pain from Monday's procedure is a killer.  You know, I have a very high tolerance for pain - either my tolerance has lessened or the pain is so much greater.  Thank goodness for meds that take the edge off.

I talked to the nurse at the oncologist office - biopsies came back bad (no big surprise).  More outpatient procedures in my near future.  They wanted to do it this month.  I said I need more time to heal before the next one - they agreed that we could wait for December.  Thank you God!

As a side note, I had a parent teacher conference today at 3:50.  Mom was coming over to watch the kids while I went to the conference.  She walks in and I asked her why she was here.  Duh!  I am in a rush to brush teeth, put on decent clothing and get out of the house as quickly as possible.  All of a sudden, my feed bag starts beeping.  This usually means there is an occlusion (which means there is a kink in the line preventing the fluid to go thru).  Nope, some strange message. 

So I decided to unhook as it was almost done and I needed to get out the door.  Of course, I loosen the wrong thing and all of a sudden blood is spurting everywhere.  Remember I am trying to get out of the house.   I call my mom in the bathroom.  We are trying to sterilize the part that needs to go back on and of course in the middle of that I touch it and it is now unsterilized - which drives my mom insane.  Any who, got it back on, got the blood to stop and tried to flush the line with saline.  Nothing happens.  So next line of defense, I call the home health care nurse, Stacy (who is the best ever!).  She lives near me so she stops on her way home.  She couldn't get it flushed with saline either.  So long story short, she changed out my dressing which includes a special needle to go thru the port.  All is well.  Sad to say, that was the big excitement of my day. 

Oh yeah, I also signed my will!  More later -
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Tuesday, October 18, 2011

Monday's Procedure and Uncertainty

Yesterday's procedure did not go well for a couple of reasons.  He did not have his laser available.  The reason this is an issue is because when vinegar is applied, all the precancerous spots turn white.  He was prepared for the two lesions that were big and visible to the eye.  He was able to cut those out - big OUCH.  He was not prepared for the little lesions that became visible to eye once the vinegar was applied.  Thus those are still there because he did not have his laser available.  I guess it was not available because I had the procedure in an ambulatory surgery center and not the hospital???

The pap that I had a couple of weeks ago that about killed me came back inconclusive as to whether they were precancerous or cancerous.  Thus during the procedure, he took biopsies of the vaginal cuff.  I will find out if they are cancerous at my appointment next week.  If it is cancer, radiation is not an option as you can not have over a certain amount of radiation.  Thus, we are talking big time surgery that would leave me with an ostomy bag and an colostomy bag.  Please pray for noncancerous.  If it is cancerous, I have come to terms with having ostomy and colostomy bags - but rather not go there.  I also guess there would also be reconstructive surgery.

HPV and Cancer sucks.  I will keep you posted.  More later -
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Monday, October 17, 2011

Today's procedure

I have to be at the out patient surgery facility at the Atrium at 9am for the 11am procedure.  I am ready to have the precancerous lesions cut out.  He will cut those out and try to ensure clean margins (wide area incisions).  It will be painful afterwards - some compare it to having an episiotomy.  I have had one other wide area incision and it was not pleasant.  My mom said cheerfully that we can stop and get a sitz bath. 

I am still not sure what he is going to do on the inside precancerous lesions.  I am just praying that I do not wake up with an ostomy (bladder bag).  Pray for the best and I will update you when I can.  More later -

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Saturday, October 15, 2011

Will signing party

As my attorney's office calls it - Will signing party - mine will be this week. My kids are almost ten - three almost ten year old triplets - so I am a little late in getting a will.  But hey better now than never.  My mom was over the other day while I went to parent teacher conferences for two of the three (of course they are perfect).  When I got home, my mom and I were talking about the will.  Sarah asked what a will is and I told her that it is for when people die so that things that we own go to the right things and people.

The right people are my three kids.  Sarah's eyes went as big as saucers.  I immediately assured her that I wasn't dying any time soon and calmed her down.  But I also said calmly that death can come any time - getting hit by a bus etc. 

Sure, sometimes I think about cancer and death - how could I not?  I am not afraid of death - I know where I am going and that it will be peaceful, beautiful and no more illness.  The thing I am most afraid of is leaving my little ones before they are ready to spread their wings and fly away to all that is before them.  Gets me everytime I think about it.  So I keep up the good fight and try not to think about it too much.  I love them more than anything - so I am gettting my will done (finally) so they will be protected if I get hit by a bus.  So I will go in next Thursday and have my will signing party with my attorney and my mom. 

So if you are a parent or even if you are not and do not have a will yet, I have a great attorney (email me and I will get you his contact info).  Get it done so that what you have goes to the people you love and want to protect.  Otherwise, the state gets to decide - not a great choice.  More later -
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Thursday, October 13, 2011

Hospital Red Tape

I had to go in and get blood work done prior to my outpatient procedure this coming Monday.  Getting your blood work done at the hospital prior to a procedure is like getting a tooth pulled without any numbing medication.  You have to register.  You have to check in again at the part of the hospital where they draw the blood.  Not to mention begging them to use my port instead of poking me (I am not an easy person to get blood from or start an IV on).  So the begging paid off - they sent me to another part of the hospital where they would draw blood from my port (good thing).  So you check in there.

Then you sit for another 30 minutes.  The nice nurse draws the blood.  One of the test was and Type and Cross Screen.  So then you have to wait for another nice nurse to work with the nice nurse that drew the blood to double check all the numbers.  Ok - I get it - safety first.

Then you finally leave after two hours.  On the way home, my cell phone rang.  It was the first nice nurse who drew my blood.  She told me that I had to have the test done 3 days prior to the procedure and not 4 days prior to the procedure which of course was today.  At this point, I wanted to scream.  I told her I would call my doc office (there was no way I was going to repeat the above without kicking and screaming first like a baby).  God bless the doc office - they said I didn't have to go back tomorrow!

So I then call the first nice nurse and told her the doc office said I was good to go.  She then told me it was a lab rule and the lab would have to clear it with doc office - fine.  No way I going to repeat the above.

Now I get to go to the hospital on Monday at 9 am for an 11 am procedure.  Gotta love it.  Sit and wait.  As you can tell from this post waiting is not my strong point.  More later -
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Tuesday, October 11, 2011

Biopsy results and plan

The biopsy results returned as the doctor guessed as VIN 2 lesions.  I am going in Monday, Oct. 17th for outpatient surgery to have lesions removed surgically.  This surprised me a bit as the doc said surgery was out due to skin changes and could cause fistulas which would make things so much worse.  There will be wide area incisions to try to get clean margins - so it will be painful afterwards.

It seems they try one treatment after another only for the problem to return.  My prayer is that this will work and it won't come back.  I will have a PET/CT scan at the end of Nov. or the beginning of Dec. to see if cancer is showing any where.  I am especially looking forward to this test and the results and pray that the precancerous lesions are all gone and my lymph nodes are clear.  This is all a waiting game and it kills me to wait for tests and results.

When I know more, I will keep you posted.  More later -
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Sunday, October 9, 2011

Oncologist appt. 10/5/11

As I said in an earlier post, I dread going to the oncologist.  It is never good news nor do I get out of there without crying at least a little.  Seems the HPV cancer effects have moved to external regions.  After the 5th lidocaine shot, I finally could not feel the biopsy.  He thinks it is VIN 2.  I am to use Premarin to heal the burns internally.  I go back in three weeks so he can see if I have healed internally and make a game plan for what the biopsy results show.

More torture ahead.   VIN 2 is not cancer - it is precancerous.  But still needs to be treated as if it is cancer.  The doc said surgery is probably out as the skin has hardened from the radiation.  So we will have to look at other alternatives: back to the cream that burns me and/or interferon shots (to boost the immune system to fight the HPV).  My vote and prayer is for the shots and that it works.  Surgery could lead to a fissure which means I may end up with a bag for bladder voiding.

Sorry for TMI - but want people to know what can happen to you.  More later -
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Monday, October 3, 2011

Welcome to October

This is my fav time of year where it goes from 106 to a cool 90.  The countdown to the gyno-oncologist appointment has begun.  I go Wednesday at 12:30.  Can you say CANCER SUCKS and DREAD.  I need a magic wand - oh yeah if I had one of those none of this would have happened.  I will keep you updated on what he has to say.

A big shout out for all the prayers - thanks a million!  I couldn't make it through this without you!

More later-
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