Some days are harder than others

I am so looking forward to the New Year and what it might bring.

I had a follow up appointment with my Oncologist on the 27th.  I got there in time to ride up the elevator with him.  He patted me on the back as he spoke to another doc on the phone.  I know it is rude to talk to someone while they are on the phone (I tell my children this all the time) - but I couldn't help myself.  I told him that he was not allowed to hurt me ever again - he just smiled.

I got signed in.  Paid my co-pay.  Went to the ladies room.  Came back out to wait in the waiting room only to hear the receptionist make the following announcement:  "The doc is behind on two procedures at the hospital as it was the hospitals fault as they were not turning beds fast enough."  As there were about 4 people ahead of me, I decided not to waste 2-3 hours to see him.  Will try again on the 5th. 

However I spoke with the nurses and he actually called me back.  They are concerned with my intestines and other girl parts in the PET/CT scan.  They want to repeat it in three months.  This test is very costly and they usually run it once a year.  Something to look forward to.

My children are with their father this week.  I had left two messages for them.  I finally got a return call tonight.  Sarah then told me how she cried the first two nights because she missed me - hurts my heart.  They are coming home the first of January.   Even though they drive  me a bit crazy - I miss them so much.

Her IPod touch got here today.  She had shattered the screen so badly that they just sent a new one.  No touching them until they have covers.  But she was excited to know she got a new one waiting for her.

Here is where it gets hard.  The last couple of years have been completely brutal at times.  So much about my life - like the fun stuff is gone.  I will never get them back.  For some reason, after the excitement of unwrapping the gifts, I go into a holiday funk.  Need to get that figured out.

I have to remind myself that this is in God's hands.  I am thankful that I have my life and can still raise my children.  I am thankful for my mother - she has been there every minute of the way holding my hand.  I am thankful for all those praying for me.   I know you have God's ear - but His will will be done.  I have faith in that.

Happy New Year to all of you!  I wish you the best of love, life and health.

More later -

What's up?

I hope all of you had the best of the Holidays! I hope you were able to share them with those that you love.

I did.  The trips  were over the moon excited.  They received IPod touches - you would think the world stopped and the screaming began.  I did something very, very foolish - well make that two:

1.  Since the gift was from Santa I did not get cases for them.  Of course Sarah drops hers on the tiled kitchen floor.  Oh the tears began.  They stopped once I told her that I would pay for the repair.  She broke it on Christmas afternoon.  So I went on line and set up a time for them to call me.  So all is good.  They said take it to UPS and I would have it back two days later.  So she thought we should go Monday - no way.  I thought the traffic would be bad.  It got to UPS today.  Funny thing is that she is at her fathers for the week so she won't be here when it gets here.

2.  I gave them my iTunes account password.  Bad, bad, bad decision.  Somehow they loaded a phone app and a text app.  I received calls an texts All day long.  Lessons learned.

More later -

Results!

Everything  on the PET/CT appears clear!  There is a little bit of uptake in the intestines, but the doc thinks it is just the intestinal damage from the radiation and the surgery that was done.  Big sigh of relief. 
Thanks for the many, many prayers!  Merry Christmas!

I hate waiting

Just like children who think Christmas will never get here - I can still remember in second grade going up a set of stairs that had a big Christmas tree in the middle thinking I couldn't stand it a moment longer.  Let me at the presents!

Now at 42, I still hate waiting.  The years fly by.  But waiting on the results of my PET/CT scan drives me bonkers like a kid waiting for Christmas morning.

I have a call into the oncologist office.  I am crossing my fingers that they will call me back today.  I have been so paranoid that I will miss the call that I am taking my cell phone into the bathroom with me every time I pee - which is about hourly these days.  But NOPE - no call yet.  I will let you know as soon as I know.

More later -

Annual PET/CT scan

I am having my annual PET/CT scan Monday, Dec. 12th, morning.  You are supposed to eat a high protein dinner (right - like that will work).  Then you cannot have sugar or sugar substitutes 6 hours prior to the exam.  They give you IV sugar solution and you have to wait an hour.  Then they do a PET and CT scan layered over each other.  The scan will show uptakes of sugar in areas that there is cancer.  Pretty amazing technology and how our bodies work.

I was clear last year.  I am praying for the same this year.  I will let y'all know the results as soon as I find out.

Thanks for the shout outs of love and prayers - they are truly appreciated.

More later -

Monday Dec. 5th's Procedure (not for those who get grossed out easily)

Hi All -

Sorry it has been so long since I have posted and have not kept you up to date on Monday's procedure.  This post may be too much information for some - stop reading here if ya can't take it.

Prior to them putting me under on Monday, I got a chance to talk to the doc (usual practice).  I asked him if he was going to hurt me more or less than the last procedure and he replied way more.  Jeez - thanks a million.  As I sit here posting this, I am sitting on an egg crate donut.  Last procedure was scalpels and stitches - this time laser.

Lasers burn away tissue - this is where it is about to get really ugly.  I had precancerous lesions on the inside and out.  About half way up the vaginal canal, I had thick scar tissue from radiation.  He had to pull it apart and stretch it before it could laser it.  Having tissue lasered up inside of you isn't so bad.

I was still healing from the last procedure when he did the wide area incisions on the outside and still had dissolvable stitches that had not yet dissolved.  No biggie.  He burned so much of the outside parts away that I woke up and wanted to hurt somebody badly.  I am so raw and burned - not even joking.  I bled like heck the first day.  The bleeding has slowed down but there is still plenty of it.

Tried my first Sitz bath yesterday.  Jury is still out on that one.  Prescriptions and instructions I left with:

1.  Leave in packing for 10-11 hours
2.  Pickup Ocean something from a pet store
3.  Pickup a Sitz bath from a specialty pharmacy that carries supplies
4.  Hydrocodone (with a refill - refills on this is rare for outpatient procedures because the pain is usually gone before you need a refill - so I took this as not so good of a sign)
5.  Morphine
6.  Burn cream - twice a day

In between times of the burn cream, I coat the outside with Vaseline so that it does not burn so bad to urinate.  And unfortunately with the radiation damage to the bladder, I urinate at least once every hour to an hour and a half.  Happy peeing - NOT.

Taking out the packing was PAINFUL - it had to pass the area he stretched out and then lasered - must of been thirty feet of it - it went on and on.  I grinned and I bared it (more like three feet of it) and cried through it.

I take pretty high doses of morphine for the bladder damage so I did not even fill that script - I had bigger guns at home.  Did fill the hydrocodone as the two drugs work differently and they work better together (no I am not a druggie - just take them as prescribed and it usually works although I do have morphine for break through pain).

So to sum up Monday's procedure - it stunk and is still taking it's toll.

I have been down until today.  Had to see the urologist as there has been blood in my urine.  My mom took me and I took my donut (if you do not know what a donut is, ask any women that has had a child vaginally and she can explain it to you or google it).  The urologist was not concerned about the blood in my urine - typical of bladder radiation damage.  Check that off the list.

After the doc, we had to make a quick stop at HEB.  Mom did most of the work.  I was dying when I got home even though I had taken my prescribed meds at the prescribed times.  Time for break through pain morphine.  I will not lie - I have a pretty HIGH tolerance for pain - but this takes the cake and the icing and the ice cream and anything else you can think of - cool whip maybe?.  Thank God for my mom, that I did not wake up with a poop or pee bag and for just giving me another day.  I am going back down for at least 3-4 more days!

Thanks to all the prayer warriors out there - I soooo appreciate the prayers.

I am due for a PET/CT scan which will show if the cancer has moved anywhere else.  I will keep you posted on that one.  Hopefully my next post will be more merrier - tis the season to rejoice.

More later -

Thanksgiving

It has been a while since I last posted.  I hope each of you had a wonderful Thanksgiving with your family and friends.  I am still feeling good and all is stable.  What a Thanksgiving that is!  I have a quiet week ahead before I go back in for another procedure on Dec. 5th.  Not looking forward to it - but don't have much of a choice.

If that is all I have to complain about - I am lucky.  My kids have been with their father for a little over a week.  I have missed them but have enjoyed the time to rest and have a little fun.  They are due home any moment - can't wait to give them big hugs and kisses!

Thanks to all that have kept me in their prayers.  I know we each have our own struggles.  Personally, some of my family members have been going through tough times with health issues.  Please know that each of you are in my prayers.  There but for the grace of God go I - how true.

More later -

Never thought I would get to this point!

Hi All

It's been awhile since I posted.  I have added a place on my blog to enter your email address and you will be notified when I post - hope it works.

When I say I never thought I would get to this point, I mean everything has finally calmed down and is stablized.  My pain is being managed (I have a wonderful pain management doc - if you need one, let me know and I will get the contact info to you).

I don't have umpteen doctor appointments each week.  My pain is being managed.  My TPN feeds are keeping me nourished.  Still want a new bladder - but the meds usually help tremendously.  Still can't eat but that is kind of okay - I MISS FOOD!  But it is usually not worth it to eat unless it is something that is just beyond my saying no to - doesn't happen often but it does happen.  I will lose it all but sometimes I just can't resist.

With Thanksgiving upon us, I am so grateful for all the prayers, my family and feeling somewhat human again.  God has been good and the prayers sent up for me - I am grateful for each one.

More later -

A love letter to my Mom

Dear Reader,

Everything I have written about - the good, the bad and the ugly, my Mom has been there every step of the way.  I say thank you all the time.  But I really want to do more.  I want her to understand that I couldn't have made it without her.  She is there time and time again for the good, bad and ugly.  She always says yes to any help I need for either myself or my triplets.

This spring, while I was in the hospital 7 times and things got hairy and scary, she stood by me.  Even through her tears while witnessing some of the not so fun things, she stood by me.  The kids were in school and her husband has Alzheimers and is going down, she ran two households.  I could see in her face she was weary but she never gave up on me or my children or her husband.  Sure, some things did not get done but who cares - they are small and inconsequential. 

So Mom - please know from the bottom of the ocean to the top of the heavens, you are my rock, my best friend, and a wonderful Mom.  I love you so much - much more than words could ever express. 

Now I need to wipe away my tears.  More later -

Dear Bladder Part Dos

Dear Really Damaged Bladder,

The severity of your damage I completely understand but completely detest.  Not only do you keep me up at night but today you have been reallllly bad.  Resistant to meds and rest.  What's up?

Is there such things as bladder transplants?  If so, please put me at the top of the list.  Many thanks.

More later-

Up all night

Dear Bladder,

I know you are damaged.  I know you like to wake me up hourly to go to the restroom.  This gets tiring.  This adds to the great amount of fatigue I experience daily.  Is there any possible way you can stop this? - it is really tiresome.

Can you go back to somewhat normal when I take my meds to calm you down so that I may sleep for more than an hour at a time?  I would greatly appreciate it.  Hope everyone else is sleeping  - because I am not.  I am little jealous - but what is a girl to do.

Rest well.  More later -

What Chemo didn't take but Malnutrition did

You know how women are about their hair - it is their crowning glory any way they chose to wear it.  The type of chemo I was given was one that did not make you lose your hair - I thought I had it made.  During treatment, I did lose a little hair but it was more the radiation that took it from me as I couldn't eat very much as it made me sick some of the time.  My hair was falling out a little at a time.

When January rolled around, I got sick.  I couldn't eat much and what I did eat I couldn't keep it very long.  I was telling doctors - gastro doc, oncologist doc that something was wrong.  That was February.  I was sent for test and they couldn't find anything.  Little did I know that radiation was about to rock my world.

I went through March and still couldn't eat.  In February, I started losing hair in clumps.  Every time I brushed or combed my hair, I couldn't believe how much was coming out on the brush or comb.  At the end of March, I went into the hospital with my first intestinal block.  And things went down hill from there as I have about written before.  My hair just kept failing out.

They did not start feeding me through the PICC line until sometime in April.  Finally in the last couple of months when I blow dry my hair, I can see the places where the hair is coming back in.  I was always wearing my hair in a clip so that you couldn't tell how thin my hair had gotten.  Last night, for the first time, I wore my hair down.  Maybe not a biggie for you - but for me, it was wonderful!

I haven't had a haircut since March - did not need one as my hair was not only falling out, it was not growing at all.  For the last  couple of weeks, my bangs have gotten to the point that I know it is growing.  I am so excited even for the littlest of things or should I say a big thing for me.  Time for a cut!

More later -

Great Guest Post by David Hass

Overview of Cancer Survivorship

Cancer survivorship is a topic that comes up quite often and is quite important in its own right. It refers to the exclusive group of people who have fought the disease and won. Thus, members of this group understand each other on very base personal levels.

The concept of survivorship is important because it creates a sense of camaraderie and shared experience. Those who have fought and stayed brave through chemotherapy and radiation therapy often find it difficult to relate to others who have never had the disease. This is where support groups come in.

Internet and in-person groups both serve different purposes. Web-based groups bring together cancer survivors from all over the country and indeed from all over the world. With the click of a mouse button or a few strokes of the keyboard, people can instantly connect with others who are thousands of miles away. Internet-based survivor message boards are important because they allow men and women to share tips. For example, individuals might discuss diet and nutrition, exercise, moral support from family members, or even operations and other surgical procedures. Many times, helpful information can be gleaned and put to work in one’s own life.

Whether a person is suffering from a common disease like breast cancer or a rare and deadly cancer like mesothelioma, in-person groups are also helpful. People from the same city or region can come together and talk about what they’ve experienced. These can be thought of as group therapy sessions. A doctor, nurse, or psychologist may even lead some of them. Survivors can share stories and help others who are currently battling a malignancy themselves.

Ultimately, these are all ways to release inner emotions and to get complex feelings out in the open. When people take the time to talk about things and pour out their hearts to others, surprising results usually follow. This can sometimes be tough to do, but encouragement from others to speak one’s mind should help quite a bit. Often, men and women will hit upon feelings that they did not even realize were there.

For those individuals looking for such support groups, they can look to local medical organizations for help. Asking around might also yield some helpful information. If individuals are a bit wary of heading to one of these groups, they should give it a try. It may be exactly what is needed.

By: David Haas

Hope you enjoyed his article - it has a lot of great points about surviorship and different ways to reach out.  It also contains great links that I plan to visit and hope you do too.  Thanks to David and his care regarding cancer patients.

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-

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 -

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 -

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 -

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 -

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 -

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 -

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 -

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 -

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 -

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-

Call back from gyno-oncologist office

I received a call back from the gyno-oncologist office yesterday regarding the chemo cream burning the tar out of my skin.  They suggested to go from every 7 days to 10 days to give my skin more time to heal.  They want to see me next week - so I was lucky there I already had an appointment scheduled for next Wednesday.  They also suggested using desitin - yes the one you put on baby's diaper rashes.

See this is where I get really pissed.  One, I hate going to that office - they always hurt me in some way that I leave in tears.  The doc is fine - he is just doing his job which is trying to save me from getting cancer again - but dang it hurts.  Really , desitin? - like that will solve the world's problems - but I am trying it.  Problem is that the bladder cystitis is like a super bad UTI - so you are using the ladies' room every 45 minutes to an hour.  Thus the desitin cream doesn't stay around very long.

I often think if these docs that I see were treating their families for the same thing, would they prescribed the same treatment of care? 

Off to hyperbarics - which is another one of my least favorite things to do is drive there an hour, sit in treatment for two hours and drive another hour home.  By the time I get out of treatment, my bladder is out of control with pain - thank goodness for morphine.  Lying down is the only way my bladder stays relaxed - sitting and walking puts too much pressure on my bladder and it hurts.

Okay - enough whining!  Other than the above I am in a decent mood which counts for something good.

More later -

Treatments and HPV vaccine

Happy Monday!  Not!  My internal chemo cream has burned the tar out of my skin.  I have a call into the nurse as I have 7 more weekly treatments to go and I just think I cannot do it.  Sometimes the treatments are worse than the cure which I know to be the absolute truth. 

Between getting up every 45 minutes to use the ladies room every night and go all day long really bites as it burns like the dickens.  And I never get a good night's sleep - can we say fatigue?  It really interferes with your life when you are trying to function somewhat normally.  Then add in morphine and valium to top it off - try functioning normally.

I know there is much controversy around the HPV vaccine.  Children can start getting the vaccine at age 11.  Personally, I plan to have all my children (two boys and one girl) vaccinated.  I do not want them to ever go through what I am experiencing.  It would break my heart.

I did see a special on a show called "Second Opinion" which airs on PBS regarding the vaccine.  They believe that the vaccine is only good for 15 years.  I still need to put in a lot a research in order to make the best decision for them.

I currently have a call into the gynocological oncologist and the doc that does my feed bags.  I need help with the chemo cream burns.  And I need help with TPN.  There are such things as half bags - hopefully he will be happy with my weight gain (Thanks to Coca Cola) and allow me to go to half bags.  I am hoping this will allow me to get a bit more sleep.  Grasping at straws right now to find the right balance.  More later -

After cancer treatments

After you are treated for cervical cancer, you get pap smears every three months for the first two years and then every six months for years three thru five.

As my luck would go, I have never been declared in remission.  My first pap came back bad which was expected as treatments had just ended.  My next two also came back bad - still showing high grade dysplasia.  After the third one, the gyneological oncologist decided to do a laser treatment.  This was done in the hospital.  They do not go very deep as the wall lining is thin and can damage the rectum wall - very dangerous.  The next pap went from high grade dysplasia to carcinoma in situ.  Not good as it is one more step closer to recurrence of cancer.  He started me on 12 weeks(once a week) chemo cream.  It is not terrible - but does cause a couple of days of irritation.  The doc told me it shouldn't cause any irritation - but if there is a side effect, I will get it.  I go back to see him after my sixth treatment - which is in two or three weeks.

I also saw my Radiation Oncologist a couple of weeks ago.  I asked her if many of her patients have all these problems that I have experienced.  She said no.  She said I was high risk due to my Rheumatoid arthritis which has vascular issues and can cause the radiation damage to be more severe.  I also asked if I could get more intestinal blockages - unfortunately the answer was yes.  Once again, if there is a side effect I will get it.

Thanks to all my prayer warriors out there!  Please keep praying.  I greatly appreciate it.  More later -

July, August and September 2011

During some part of July my Radiation Oncologist got me setup for hyperbaric treatments.  The chamber looks like an airplane.  They slowly bring up the oxygen level.  Then they put a big plastic hood on you.  It takes two hours.  You can have no electronics or phones.  They play movies.  I usually sleep the whole time.  I have extreme fatigue.  I could sleep 15 hours a day if I had the time - but that doesn't work with kids and doctor appointments.

I also start seeing the pain management doc prior to my bowel resectioning.  She put me on high does of morphine.  After the resectioning surgery I was able to come off the morphine.  Then boom - the radiation damage caused bladder cystitis at the end of June.  She put me on 30mg of extended release morphine twice a day and up to 15mg of Valium a day.  Valium is a great anti-spasmodic.  The pain was unbelievable.  I was having break through pain.  I saw my pain management doc last week she added 15mg of immediate release morphine up to 4 times a day for break through pain.  There is no cure for bladder radiation damage so the only treatment is meds.

I see so many specialists as well as my son seeing a psychologist and psychiatrist.   We have at least two appointments a week between the two of us if not more. More later -

July 2011

The weekend after we got back from the coast, was 4th of July weekend.  On Friday, I had gotten a call from the home health care nurse and my doctor's office.  The doc office said that if I got any weaker over the weekend to go to the emergency room and have them call my doc so that I could get a blood transfusion.

Due to getting off TPN, I had dropped down to 101 pounds and was so weak.  I was a hot mess.

I got weaker and weaker.  I went to the ER as my internal med doc had instructed - they  hooked me up to fluids.  And then we sat (for hours).  Nothing happened.  They decided not to give me a blood transfusion as I so badly needed.  So I walked out - I am not a patient person especially when I know they are not concerned with me or doing anything for me.  Monday was 4th of July.  My friends took my kids to a big pool party and I stayed home.  I found out later the ER doc never called my doc.

On Wednesday, I saw my radiation oncologist (who is the best doc - she gives you her cell phone and actually answers calls and texts).  After seeing her on Wednesday, I got two units of blood on Thursday.   She is a doc that doesn't mess around and gets things done.

Blood transfusions are wonderful things - thanks to all who can and do make blood donations.  I slowly got my strength back over the next couple of days.  But still could not retain any food.  Thank goodness for TPN bags - they provide all the nutrition and vitamins I need along with electrolytes.

I also saw my internal med doc and went right back on TPN.  Somewhere during this time I saw my gastro doc who said he could do no more for me.  My intestines are so damage that if I eat anything even from items from the low residue diet (which is completely opposite from eating healthy).  I asked my internal med doc if I would be on TPN forever, he would not commit one way or another. 

So glad I had a mediport put in as the PICC lines that they had been using in my arm would act up frequently and get blocked.  The port is much easier.  The home health care nurse comes once a week to get blood and change my port line which is how I hook up to TPN.  Much easier and cleaner.  Only bad part is that I can't get it wet.  This means I have to take baths and wash my hair in the kitchen sink - shouldn't complain but I really do miss taking showers. 

Throughout July I continued to gain strength by drinking Coke.  I had always been a die hard Diet Coke drinker so the switch was hard but I gained 13 pounds between being back on TPN and drinking Coke.  But I really have no social life which is usually centered around food and drink.  Both are off the list for me.  No matter what medicine they give me to stave off diarrhea - it doesn't work.  It sometimes is really depressing.

One thing to be grateful for is the love and help from my family and friends.  Couldn't do it without them.  Love them all.  More later -

June 2011

My UTIs continued.  I was sent to another specialist.  I saw the urologist mid-June.  They took an urine sample but did not send it the lab for testing as I  had been on so many antibiotics that it could possibly return a false negative.  However, their little stick said it looked like another UTI.  The pain was out of this world; it was so difficult to deal with.  Everywhere we went, we had to find the bathroom as I had all the symptoms of an UTI.

He prescribed me Vesicare - did nothing to ease the spasms and the pain.  Also during that time, I saw my Radiation Oncologist and she gave me valium which helped ease some of the spasms.  The urologist wanted to schedule a procedure at the hospital to take a look at the inside of my bladder and do a biopsy. Also I went to the pharmacy to pick up another med and the urologist had also prescribed Prosed DS - which turned out to help my bladder along with the valium.  Felt like a Christmas present.

Also during this time, I talked my internal med doc to move me to half bags of TPN.  I felt I was able to eat a bit more with a new anti-diarrhea med.  I was okay for a while and then I talked him into no TPN and removal of my PICC line so that I could get into the pool with my kids.  Huge mistake.  I ended up not being able to eat at all - the smell of food made me nauseous.

I had scheduled a coast trip for my 9 year old triplets.  It was smack dab right in the middle of this new nightmare.  I couldn't take that away from them as they had been troopers dealing with a sick mom that most of the time always said no to outings.  A friend went with us and took care of the kids the whole time.  I had no strength and walking across the room took it out of me.  I would have to rest after very short trips from the living room to the kitchen.

The next week, the home health care nurse came on Tuesday as usual.  She took my labs as usual.  My hgb (red cell blood count - basically extreme anemia) was dangerously low.  Of course it was Fourth of July weekend - so things were a little haywire with docs and getting what I needed.  I was so weak.  More later -

April and May 2011

In April I continued to have issues eating and keeping it in.  I was in and out of the hospital so many times.  More tests, more NG tubes, more CT scans and more x-rays.  The docs finally decided to put me on TPN which is a liquid feed bag with about 2000 calories of all the nutrients, electrolytes and vitamins I needed.  They put a PICC line in my left arm.  The PICC line connects with the feed bag line.  It goes for 12 hours so I usually do it over night.

One morning, my mom came over to help with the kids as she does every morning.  I was running a fever and it got up to 102.  I was hallucinating and had no strength.  My mom was calling my docs.  They were worried that my PICC line was infected as the line ends right by the heart.  They told her to get me to the hospital asap.  I could barely walk - which is a huge overstatement.  She got my walker and we got to the car door and before she could get me in I passed out on the driveway and my noggin took a huge hit on the concrete.  Thank goodness for the kindness of neighbors.  Between my mom and the neighbors they got me in the car.

This led to another hospital stay.  They took out the PICC line immediately to send it to the lab.  Turns out I just had a really bad UTI.  I stayed in for about 4 days.  I saw every doc under the sun.  They put in a new PICC line and sent me home back on TPN and IV antibiotics that also could be hooked up to the PICC line.

Things calmed down.  I just avoided eating.  Then at the end of April, I had my third intestinal block.  Back to the ER in extreme pain and nausea.  As they were admitting me to the ER - the smell of everything from the nurses' perfumes to the smell of the latex gloves made me so sick to my stomach.

This time around, I finally had surgery that they were trying to avoid.  The surgeon cut my lower abdomen open and went through every inch of my small intestine.  She removed 18 inches and resectioned my bowel.  I spent about a week in the hospital.  The recovery was tough.

The surgery took care of the tremendous abdominal pain but did not fix the fact that I can't retain solid foods.  My gastro doc said it is most likely that I will always have troubles with retaining food - which turns out to be true despite the meds they gave me to stave off loosing the food.  Another lovely side effect of radiation.

Throughout May, I continued to get UTIs.  I was on one antibiotic after another and nothing seemed to help.  More later -

Now and Then

Now
I am so sick and tired of being sick and tired.  I have never recovered my original strength and energy that I had prior to treatments for cervical cancer that went from July to September 2010.  The radiation and chemo put me through the wringer. 

Then

In January, my issues with eating increased.  I was barely able to eat much.  I had so many issues with keeping food in me and my weight began to decrease.  I had already lost so much weight during the treatments.  I never thought I would be in a position that I needed to gain weight.  I saw my gyno oncologist during this time.  He referred me to a gastro intestinal doc.  I called to schedule an appointment - which I couldn't get in until February.

In February, I saw the gastro doc.  He suggested that I have an endoscopy and colonoscopy  All that came of that is that I had a polyp removed. He also suggested that I start drinking three Ensures a day.  I tried to get in three a day.  I felt like I was drowning and no one took it seriously.  I continued to have difficulties eating and with diarrhea.  Also about this time, the pain started.  When I ate, I would have rolling waves of pain up and down my abdomen.  It didn't seem to get better and continued.  I almost gave up most eating as it was less painful to eat.

In March, it continued on.  Towards the end of the month, one of my sons got a stomach virus.  I thought I had it also.  He felt better the next day.  But I continued to deteriorate.  By the end of the weekend, I could not take the increased pain.  My mom took me to the ER.  They gave me anti nausea and pain meds which helped immensely.  They did a CT scan of my abdomen and found a blockage in my small intestine.

They put an NG tube in.  If you never have experienced an NG tube - pray that you never do.  They moved me from the ER and admitted me to the hospital.  I got to my room around 8 pm.  Around midnight, two nurses came in and said they were going to put one in.  I had no idea what was going to happen.  They tell you to be still as possible and chew on ice and swallow it as they take a tube and shove it up your nostril and snake it down the back of your throat all the way to your stomach.  It sucks up the yuck that is not able to digest and gets stuck due to the blockage.

My gyno oncologist came in the next day with a general surgeon.  She said there my be surgery involved but they would wait and see.  The next day, a nurse came in and told me I was scheduled for surgery at noon.  The surgeon did laproscopic surgery.  She moved around my small intestine thinking the blockage had been dislodged and took out my appendix that she said looked inflamed.   I spent four nights in the hospital.  I was feeling better as they had sucked up all the yuck from my stomach and intestines.  So I went home and things got worse.

More later - Kelly

October - December 2010

I went back to work on 10/4/10.  Work was shaky - a lot of changes were going on.  I was weak but I tried to hide it.  I couldn't eat a whole lot without spending half the day in the bathroom.

At the same time, one of my sons started really acting out at school.  He was spending time with the school counselor and I started taking him to a psychologist.  He was displaying a lot of anger management issues.  It was very stressful, but I tried once again to hide it and handle it.

It really never got better and as October slide into November issue weren't getting any better and things began to crumble.  My son spent a lot of time in in-school suspension.  The crazy part of it was that he is a really great kid.  But no matter the counseling and restriction at home nothing seemed to reach him.

His father and I ended up in a meeting with the school principal and his teachers.  The discussion centered around his behavior, the counseling he was receiving and how we could make it better.  Didn't help.  As he continued to deteriorate at school and it affected my health suffered.

I have rheumatoid arthritis - which flared up and made me feel even crappier.  During my treatments, the docs took me off my high powered arthritis meds.  I was living off high doses of steroids.  Also my lower back went haywire from disc degenerative disease.  I needed surgery but the timing was bad.  The back doc told me I would have to gain some weight before I could withstand surgery.  I ended up getting four rounds of steroid shots in my back.  The fourth one finally did the trick.

For the Rheumatoid arthritis meds make me immuno suppressed.  This played into my cervical cancer.  Most cervical cancer is caused by the HPV virus.  Most people sluff it off after a couple of years.  But as I was immuno suppressed my body couldn't get rid of it.  Thus it lead to the cancer.  A scary part of it is that my body will never be able to get rid of it - which can cause more cancer.

I went for a repeat PET/CT scan in December.  At that time it showed no residual cancer in my body.  But my 3 month follow up with the gynocological oncologist in which he did a Pap test, still showed abnormal cells from the HPV.  I was showing high grade dysplasia which is two steps before cancer.  Better believe I will get all three of my children the HPV immunization shot.  More later -

Family and Friends and Blood work

A big part of my journey included my Mom, my children and friends. 

My Mom

She and I have always been close.  After the gynecologist called to break the news, the first person I called was my Mom.  She lives a mile down the road and came to my house immediately.  We mourned the diagnoses together and were so curious as to what would come next.  Since the docs wanted me to wait to heal from the hysterectomy, my appointment with the oncologist was scheduled for a month after the diagnoses.

Whenever I need my Mom, she goes into Mother Bear mode and nothing can stop her!  She has done so much for me before the diagnoses, during the treatments and all the aftermath.  Sometimes my friends did not understand.  They wanted to help so badly - which I appreciated greatly.  But in all truth all I wanted was my Mom.

She was always the first one there when I needed help.  I always remember her hugging me as I was growing up and telling me how much she loved me.  I don't think there is one thing that could come between us.  I love her more than words can express.  Thanks Mom for being the best Mom I could ever have!

My Children

My sister had died in 2006 after a long battle with breast cancer.  My children were four at the time and had a bit of awareness of it as she had lived with us but did not have a total understanding.  My concern was that they knew she died of cancer and was gone.  Although they were 8 at the time of my diagnoses, I did not want them to know I had cancer and would fall off the face of the earth.  Probably not the best decision looking back.

They knew I had surgery on my tummy.  So when I became sick during treatments, I told them I was just having issues with my tummy.  At the time, I had a babysitter so they had a fun summer even though I couldn't do much with them. 

My Friends

My friends kept up with me through Facebook, text, emails and phone calls.  I would post updates on Facebook and they were always at the ready with prayers and offers of help.  I had my Mom and it was difficult to accept help from other sources.  It was a rough time and I really did not want to see anyone - I was way sick and just thought it was best.

Blood work

I know I mentioned earlier that I went for weekly blood work to see if I could withstand treatment.  The chemo nurse called me at home and told me my blood work results were horrible and to go directly to the ER.  I was so sick and tired I asked her if she was serious - she said she was and to GO!

The kids were with their father that night so they were taken care of.  My mom came and got me and took me to the ER.  They immediately got me in and did blood tests.  The next thing I knew, the nurses and doctors were all walking back in wearing masks.  My immune system was completely wiped out and my electrolytes were way below normal.  I learned that being that low in electrolytes could cause heart and brain damage.  Not fun to hear.  They immediately hooked up my IV and started giving me magnesium, potassium and saline.  I was admitted to the hospital for the night.  There are always so many roadblocks I faced but I keep going as best as I could.  More later -

What came next!

One huge thing I left off of the beginning is that my wonderful group of friends and coworkers through me a party - we called it "A Celebration of Life."  I was overwhelmed by the love there and the prayer warriors that started to pray for me.

I so believe in the power of prayer.  I had seen it when my triplets were born at 28 weeks and are now perfectly healthy.  I had such a support group of great people - I feel so blessed.

So now to the treatments.  The first week went okay.  I thought I can do this!  About the third week was when the trouble began.  I would go for weekly blood work to make sure all the counts were good so I could withstand treatment.

I had a couple of incidents of passing out.  But one night it was horrible.  Every time I would get out of bed to use the restroom, I would crumble to the ground.  I hurt myself by hitting my head on my dresser, on the kitchen tile when I was trying to get something to drink and hitting my head on the bathroom tile.   I called my mom and she came and got me after the babysitter came to the house.

My mom took me to my Radiation Oncologist's office.  They could not get my blood pressure by using the automatic cuff.  Once the nurse got it manually, it was 60/40 - hence I was severely dehydrated.  So they gave me tons of IV fluids.  Also my blood work that week was horrible - I was border line in need of blood transfusions.  All treatments stopped for two weeks.

A quick word about my Radiation Oncologist - she is the most awesome doc.  She gave me her cell number and told me to call her if I ever got in trouble and wasn't feeling good.  One weekend, she even took calls when she was on vacation.  She has always advocated for me and made sure I was getting the treatment I needed or sent me to docs to address any symtoms that she couldn't.  Love her!

For those two weeks, I went to the hospital daily for blood work and Neupogen shots to bring my blood counts up.  I escaped blood transfusions and my counts came up.  I was strong enough to resume radiation treatments but the docs decided I was not strong enough to resume chemo.

I restarted the radiation treatments and it was rough.  I could not retain food - everything went right through me.  Anytime I had a doc appointment my mom would take me.  She would go in first and get me a wheelchair.  I had nothing left and had no strength.  By this time I had lost 27 pounds and was weak.

As I was nearing the end of my 30 radiation treatments, my radiation oncologist told me I was going to get 8 additional treatments focused on my right ovary as they were worried about how it looked.  Once again I was facing something that I did not think I could do and was very disappointed.  I just wanted to get it done with and sleep.  I was drained.

I got the 8 additional external treatments and also had the planned two internal radiation treatments.  All treatments ended in mid-September 2010.  The docs wanted me to take a couple of weeks off to recoup before I went back to work.  So Oct. 4, 2010, I went back to work.  In time all hell broke loose.  More later -

The Beginning

Hi!  My name is Kelly and I was diagnosed with cervical cancer stage 2 in May 2010.  I had no idea what I was in for!  You hear the word cancer and you have two choices:  curl up in a ball or you fight.  I am not a doctor but want to share my story from the patient point of view to help others.

I was 41 years old at the time of the diagnoses.  I am a single mother of triplets.  And I was scared.  My symptoms were constant bleeding.  During the same time, I needed a left knee replacement.  I decided to do the knee replacement first so that I could get walking without pain.  Then on May 19th, 2010, I went in for a hysterectomy.  I went home the next day.  Around 5 pm, my gynecologist called and broke the news.  I broke.  I broke for my children, my Mom and myself.

I was sent for a combined PET/CT scan.  Luckily, the cancer had not metathesized.  I had to wait for the hysterectomy to heal before I could begin any treatments.  I had to find a gynecological oncologists and a radiation oncologist.

I met with the doctors and they told my the plan.  Radiation treatments are the workhorse in cervical cancer.  Chemotherapy is used to boost the effects of the radiation.  Treatments began 6 weeks after my hysterectomy.  The day before chemo began I had a mediport put in my chest for the doctors to give me the chemo.  I also began 5 days a week radiation - planned for 6 weeks.

Cisplatin was the chemo and it doesn't make you lose your hair - so  I was happy about that.  But three weeks into it, my gynecological oncologist did not like how my mediport was healing so he took it out in his office!  Radiation and chemo took me down pretty quickly.  I couldn't retain any food no matter the medications they gave me.  More later -