My Cancer

Update

OK…..It has been awhile since I have updated and ALOT has been going on.  As of my last post you know that I didn’t have chemo because of my Creatinine levels being 2.9 (which means that my kidney function is down).  They decided to go ahead with the CT scan that day instead.

The results of the CT scan showed that the cancer was progressing and that they chemo Taxol/Topotecan that we had been using was no longer working on my tumor.

My Dr. decided that she wanted me to go on the chemo treatment Avastin which is not technically chemotherapy…it is an agent that stops the blood supply to tumors and does not allow them the blood they need to survive.  This all happened over the Christmas holiday and we lost about a week trying to get it approved by my insurance.  My Dr. had to find articles supporting her reasoning for getting me on this treatment and send it to the insurance company…they approved it.  So I was to begin the treatment on Monday the 3rd.

I went in on Monday the 3rd and they once again did my bloodwork.  The chemo nurse noticed that my hemoglobin level was at 6.6 which is extremely low…this number reflects how much oxygen is being supplied to the organs in your body.  So they wanted to give me 3 units of blood with a transfusion.  I went back to the Oncologists office to lay down because I was in alot of pain…..that we were trying to get under control.

My Dr. decided to admit me to the hospital because I was in uncontrolloble pain and so I could have the blood transfusion. They also did more testing and discovered that my creatinine level was now up to 3.9….this is the kidney function # again…..basically the CT scan showed that the tumor was pushing on my ureters and backing up my kidneys and they were really not working.

So not only was I going to get the blood transfusison in the hospital I was going to get stints put into my kidneys so that I could urinate properly.

I had that proceedure done the 2nd day in the hospital.

We stayed in the hospital and they also did a lumbar punch because my pain specialist would like to put a pain pump into me so that we can better control my pain.  Before insurance will approve this proceedure they need to do a test run so they take a needle and put it into your back like an epidural and inject pain medicine into your spinal cord.

With everything going on and all the pain medication that had been given to me we couldn’t really tell….so I had to have this done twice.

At the hospital I also got my first treatment of Avastin.  \

So lately I have just trying to stay in front of the pain I currently am wearing Fentanal pain patches, taking oral Morpine, Fentora tablets,  …it’s a full time job for Larry to take care of.

Larry’s Mom flew in from California to help take care of me…..very sweet.  She is a RN so she has alot of knowledge and can answer many questions that we have.

My Mom has also been staying with me to help me get through the tough times that you just have to cry and get through…..and Larry has once again been so sweet.  I am so lucky to have all of them.  My Dad likes to stop by also.

I know that everyone cares and wants to call and do something.  I really don’t know how I am going to feel day to day.  I literally lay in bed in pain sometimes all day…..and sometimes I have good days.  It is not that I don’t want to talk to anyone….I just want to be able to rest when I am having a pain free day and when I am having a bad day I just don’t feel like talking.  Hopefully this blog will help you understand what is going on with me.

Please just pray and send well wished our way.  My parents always pass along what people have said so I know that I am in your thoughts!

Love you all,

Lisa

No Chemo Yesterday

Monday the 20th should have been my 5th cycle of chemo, along with today and tomorrow.  First thing on Mondays when I go to the Dr. they hook up my port and get my blood drawn and send it to the lab because they have to check it before they will administer chemo.  The Dr.s Appointment is at 8:00.  After that they leave the port hooked up and just tape it up so they can use it at chemo later.  Then you get your blood pressure, temp and oxygen level checked.  After that the Dr. comes in and examines you and talks about any new symptoms that you may be having or symptoms that seem to be not improving.  I told her about my intense pain and that the Oxycontin that she prescribed doesn’t really seem to be doing anything.  She said that with the pain medication they have to start mild and kind of tweak until they get the right dosage…they don’t want to start off with too much.

She gave me a prescription for a Fentanyl patch that is worn on the body for 72 hours at a time.  This one is 50 mg.  They will probably have to increase it….because I seem to be completely above all the pain medication they give me…Nothing seems to work except for the Vicadin.  I hate taking all these pain killers….I am not a pill taker and never have been.

When I was in the Shower Monday morning I felt down below and I felt a small little nodule kind of where it has been hurting in my vaginal area….sorry tmi…..I had been feeling down there and have never felt anything before.  When Dr. Shilder was doing her exam I asked her if she could feel what I felt that morning and she said that the area in the vagina felt different than before……and she didn’t know if that was a good thing or a bad thing.  She said before it felt smoother and tighter and now it felt bumpier.  She said that it could be from the cancer receeding and getting smaller (which would be the good) or new things growing….(bad).

Anyways….went to infusion after Dr. Appointment and was waiting for them to get my bloodwork etc.  The nurse’s name was Julia…..I liked her already.  She asked if the Dr. /Nurse had talked to me about my Creatinine levels and Kidney function.  I said NO……She said that my Creatinine level was double what the normal level was and that she wanted to call over and speak to the Dr.  She came in the room later and said that they were not going to treat me because of my Kidney function being low.    Since I was already there……Charlene my Chemo/nurse went ahead and scheduled a CT scan for 1:00 that afternoon.  It was only 10:30…..so we had to hang out in a crowded waiting room for 2 1/2 hours.  It was really uncomfortable…..I am not comfortable sitting for a real long time.   I wanted to lay down so bad!

So they should have the CT scan results back today and I am hoping they will be able to tell what is going on with my Kidney….is it just enlarged?,  has cancer spread there,  do I need a stint?  Waiting for test results is terrifying and I don’t want to answer the phone when they call…..Your heart just stops then and there.

Dr. Shilder said that if the cancer has started growing again then we will change chemo treatments until we find one that does work.  YIKES!!!

That is what happened yesterday!

Pray for good CT results!!!!!!

Love you all,

Lisa

CT Scan

Thursday I went for my CT scan and blood work.  When I went to my Chemo treatment on Monday she said that the CT scan shows that I am responding well to the chemo and that all the areas are smaller by about 1cm.

My WBC counts jumped up to 10…..which I thought would be good but she said that it can sometimes signal a sign of infection somewhere so I will have blood work done again next week so we will see where those levels go..My RBC (Red blood cells and Hemoglobin) levels are really low….these are the ones that carry the oxygen around your body and give you energy….so my energy is really low right now.  They prescribed me an iron supplement to take for a week and then next week if the levels have not risen they will give me a shot similar to the one that I have had in the past to raise my WBC counts but this is for RBC cells….or they could do a blood transfusion.  So we will see what the blood work shows next week.

I am home today….again…went to work yesterday….stayed to long….my own fault and I paid for it last night.  It’s hard to find the right balance or know how you are going to react to things you normally can do with no problem!

Just wanted to update you all!

Lisa

What’s been going on….

Hello everybody,

Just wanted to update on what’s been going on….I have had 2 rounds of chemo so far.  I have it 3 days every three weeks.  I have been tolerating it very well except for this week in which I have felt like crap!  I have a CT scan on the 3rd of November to see the progress that the chemo is making.   Hopefully the chemo has stopped the cancer cells from multiplying and that it is working.

I haven’t seen many of you for a while so you may not have known that I cut my hair like 9″ after I started my first chemo and I loved it….and after about 3 weeks my hair was falling out in handfuls….so Larry shaved it.  This was kindof traumatic and liberating at the same time.  My head is whiter than white! It reminds me of a turtle.  I am NOT one of those ladies that have the long graceful neck that look good bald….LOL.  But anyways I had my hair cut to match this wig that I liked so the transformation wouldn’t be that big of a difference for me.  Now I wear my wig to work and it looks pretty natural just fuller than my normal hair.  At least everyone told me it looks natural….unless they are just being nice. I will tell you that even when you don’t have hair…..when you get in the shower you can not not shampoo & condition….I just still have to do it…then I want to blow dry my bald head when I get out.  Which feels really good and warm.

I have 2 really pretty wigs that my Mom got me….I call them Nancy & Monica….Nancy is like my normal hair and Monica is more dressy….(that was the name of the wig on the box….and they just kind of stuck)……I took them to work for show & tell before I started wearing them.

Everyone is doing well…..Julia is enjoying LN as a freshman!  CRAZY!!!!!  Lauren just finished up Volleyball at Fall Creek Valley ….Larry is taking care of all of us & keeping me positive.  He claims to like my bald head and still thinks I am beautiful….God love him…..

The dogs are good we have been hangin out this week.

I just wanted to let everyone know that I am OK and that I know that you are all thinking and praying for me.  We are hanging in there and I will try to keep this blog updated more so that you all know what is going on!

I got to go to my friend Amber’s Halloween party last Saturday night…I was too sick to go last year. So that was alot of fun!  She dressed  up like Brett Michaels….and looked just like him….it was eerie!!!

I will post some pics on FB when I can.

Love you all!

Lisa

I didn’t know that you had cancer again?

Hello Friends & Family,

I think that the news is out…but here it is straight from the horses mouth.  I have persistant cervical cancer that does NOT want to leave my body……it really likes me.

Sorry it has been so long since I posted but honestly I was just ignoring the beast and going on with things…

In my last post they had thought that the cancer was in my bowel….well I had a colonoscopy on the 30th of August and they looked all around and biopsied many areas and it was all cancer free.   I also have some very nice pictures of my bowel that I could use as modern art in my bathroom….j/k.  So luckily there will not have to be any bowel reconstruction surgery or anything like that….the colon is clear and no longer of concern.

Meanwhile we got to play the waiting game after the colonoscopy….as to what the next step was to be.  After many phone calls, a trip to Paris by my Oncologist and unreturned phone calls, waiting for colonoscopy results, we finally got to meet with the Oncologist on the 17th.  Things kind of hit the fan at that visit and I think that she realized that in their world I am sure there is not the urgency or freaking out  factor that we deal with everyday on the patient side.  We basically told her that it was unacceptable and that we were completely pissed off and NOT HAPPY…..

Things got moving that visit and everything is now in motion.  I am going to participate in  a clinical trial and there is all these things that need to have to participate…for example blood work, EKG’s, CT scans, chest X-rays.  I just got all these completed yesterday so they will submit all my paperwork and early next week I will know what my treatment will be.

I also got a port yesterday…It is called a smart port and it will make my chemo/blood draws and everything so much easier.  It is little port that is under the skin in my chest that runs directly into the arteries and they just put the needle into it and you don’t have to get IV”s anymore.  It hurts right now…but I am sure it will feel better soon.

Here is the info on the clinical trial:

A randomized phase III trial of cisplatin plus Paclitaxel with and without Avastin….vs. the Non Platinum doublet topotecan plus paclitaxel with and with out Avastin in stage ivb, Recurrent or persistent carcinoma of the cervix. So basically there are 4 groups that you be selected for one of….she said if they see that it is not working…then you can do a different treatment…..There are 450 people participating nationwide and about 25 locally here in Indianapolis.

The clinical trial isn’t some experimental medicine….basically they are taking the 2 standard treatments that are used for persistant cervical cancer and adding Avastin to it…as it has been shown to be very promising in the treatment of other types of cancers.

That’s all….Oh yeah I will be loosing my hair this time….so I may look different next time you see me.

I am a total freak about my hair….I can’t even cut it…so this is a bit traumatic for me….I don’t like to draw attention to myself so I am dont’ think I will be a big fan of the scarves and hats…but I am going to get a cute wig. and keep the scarves and stuff for home.    I know that I will completely change my mind about this and wear scarves everywhere….but right now it doesn’t sound appealing.

Gotta go!

Love you all,

Lisa

Round 2….Ding Ding

Well here is an update…not the one I want to give….but an update none the less.  I went for my follow up appointment with my Gyn/Onc on Monday and she said that the PAP that my Rad/Onc had given me the week before showed cancer cells….So its back.

I went for a PET scan on Wednesday and I got the results on Friday afternoon.  It showed cancer in the are of the vaginal cuff  that they thought was necrotic tissue.  There is also an area in my bowel ( I think that she told me the secum area.  So I have to go see a colorectal surgeon next week to get his opinion on whether it is cancer or what it is….they couldn’t tell 100% from the PET scan.  Anyways….that needs to be taken care of surgically and then I would begin chemo….

They are suggesting that I participate in a clinical trial that would give me access to a some chemotherapy drugs that would be beneficial to me.  Avastin is one of them…it has shown to be very promising.

Every time I go to the Dr.  it seems like there is always something….it hasn’t even been a year since I was initially diagnosed and I am already having a reoccurance…I thought the remission would have lasted a little longer….like about 50 years!!!!  or more lol

I can’t believe that I am not freaking  out more than I am…..I have had my moments ….but I am ready to do whatever it takes….I am not going to give up with out one H#LL  of a fight.  So anyone who’s with me….lets do this AGAIN….and fight, pray and get through this next round….Cancer is goin down….I will ring the bell again.

Cancer is messing with the wrong girl.  ….remind me of this after I have had some more surgery and when I am in the midst of chemo therapy….when I am saying…”I don’t have the strength to shower…remember that one?….I have tried to forget feeling that way!

That’s whats going on!  OH yeah….Julia is a Freshman in high school…we all went to the first high school football game….the big LN vs. LC football game….LN lost.  It was really fun.  Lauren also made the vollleyball team at Fall Creek…..she is really excited she is in 7th grade.

Larry is just awesome as usual…we were sitting and waiting to get my PET scan and we were talking and he said….”I know that this sounds terrible to say….but I like coming here with you and spending time together…”…..so I said “Do you want to have a date again for some chemo?  It’s really romantic up in the infusion room!”  He is so good at dealing with all this and so strong…and he makes me laugh all the time.  I don’t think I could handle it if it was him, or my Mom or Dad or the girls that was sick…..I am sorry that I have to put all of you through this again…

Love you,

Lisa

Update Aug. 11, 2010

I’m Back…..Hello all!

I went to my Dr.’s Appointment on Monday and it wasn’t the all clear that I wanted.  That would be too easy.  My newest issue is urine leakage and a hole in my “vaginal cuff”.  (This is like a tube sock that they sew up after you have a hysterectomy to make you as normal as possible.)  Picture a hole in the toe of the tube sock.  Basically she said that it is not healing well at all.  She thinks that the radiation has made the tissue dead and the stiches did not hold.  She said it looks grey and scabby …..this sounds like sound reasoning but since they cannot see what is behind the grey area they are probably going to want to do an exam under anethesia to clean everything out and get me stitched up again.  I have a Dr appointment at 10:30 on Monday morning with the Gyno/onc that performed my surgery for an office visit to see what she thinks we need to do.

The strange thing is that I feel great, have had no pain whatsover, and the last time I was at the Dr. they said everything looks great!  I have learned not to assume anything you can feel great and have all kinds of stuff going on!  

I started to get upset in the office when she told me that it was healing poorly.  I just wanted to hear all clear once!  I started to cry for a second….but got myself together before I had to leave.  What good is that going to do?  You just have to deal with what you get.  I just want to get it taken care of.    My Doctor told me all the good things that have been positive in my treatment….the fact that I started with a 7 cm tumor that shrunk down under 1 cm….and the fact that they removed all the residual cancer with the hysterectomy and that all the tissue around it…..lymphnodes, ovaries, tubes, fluid….were all negative for cancer.  So I am going to go stay positive and believe that this can be taken care of….until I know more.

It was weird because I feel like this time of year brings back all the memories of last year and being diagnosed…..I can’t believe it has almost been a year. 

Just wanted to give a quick update.  I will post again after my Dr’s Appointment on Monday. 

If anyone is confused why I just went to a Doctors appointment Monday just to go to another one on Monday -  I have 2 Oncologists that work together with each other.  One is a Gynecological Oncologist and one is a Radiation Oncologist…I go every 3 months for follow up and I switch between them both….Just in case you were wondering.

We went to Kings Island yesterday and It was so fun!  Really, Really Hot but Fun.

Have a great day!

Lisa

Hello!

Well Hello….I have been a stranger to my blog!  Summer is flying by and this weekend is the 4th of July already!  I can’t believe it.   I have been feeling really good and I have been back at work and enjoying my weekends and freetime.  I am working on Julia’s school scrapbook and I am caught up to 4th grade….she will be a Freshman this year so I have a ways to go….It’ s hard to get anything done because I get caught up in looking at every little paper, drawing and before you know it an hour has passed.  My favorites are her kindergarten/first grade journals when her writing is so hard to read.  Where does the time go….she was just this little girl and now she is this gorgeous girl starting high school?   I haven’t even started Lauren’s school book yet….That is next…I don’t even have the scrapbook yet…So I have lots to do!  I have  a big Rubbermaid bin for each of them that is full of memorabilia.  Lauren starts 7th grade this fall.

I got a letter from my Doctor telling me that they had scheduled an appointment for me for Aug. 9th.  I am really supposed to go back in July….so I have to call and reschedule it for sooner.  I really don’t want to! I am scared……But if there is something bad at least I want them to find it sooner than later……I pray that there is nothing growing or down there that shouldn’t be!

I have a good friend that just found out that she has Hodgkins Lymphoma…she has no idea what stage or what is going on yet….but I can’t quit thinking about her….I know how scared she is and I want everyone to pray for her….She is a great person and her family is great too!  Now I have an idea how people felt when I told them about me….My mind just keeps going back to her and I want her to be ok

I will let you know what date I reschedule my Dr’s appointment for and keep you posted!

Have a Happy 4th of July!!!

Love,

Lisa

Dr’s Appointment

I went to my Dr.’s appointment yesterday for my 4 week follow up appointment.  We had to wait 45 minutes in the exam room ….but once she got in there it went OK.   She did an internal exam and just felt around.  She said that I was still healing…but it felt like I was healing well.  It was not comfortable…

My scar is almost completely healed it’s in a crease in my skin so you almost can’t even see it.  I told her about the numbness in the incision…she said that could last for a long time…even a year.

The next step is to meet with Dr. Cardenes in 2 months for a PAP.  I will alternate between Dr. Shilder & Dr. Cardines in 3 month intervals for follow up.

She gave me the OK to return to work if I feel like it.  I asked her about lifting and vacuuming and she said NO vacuuming for at least 2 years….AWESOME!!!   hah…or dusting or cleaning of any other kind!

So I will live in the next 2 month increment until the next Dr.’s Appointment.  I am still on my No sugar..(OK I did have birthday cake last night for my Aunt’s Birthday)…but I break the rule for birthdays…they MUST be celebrated with cake.  Still not drinking any soda….Eating better,etc…I can really tell a difference in how I feel…

That is all for now!

Love,

Lisa

4 weeks Post op

Hello!

Today it has been 4 weeks since my surgery!  It has gone by so quickly.  I have my follow up appointment on Friday at 9:30. …..I hate Doctors appointments!  I want the cancer to stay away from me.  I think that I am healing well…I have been having a little bit of urine leakage…or discharge…not sure what it is, I have read that this happens when your stitches start to heal and that sometimes people have bladder spasms…I don’t think I have had that..  I still have the steri-strips on my incision.  I blow dry them on the cool setting after I take a shower…so they are almost just like they were when I left the hospital.  I hope that I can take them off after my appointment.

Lets see…what has been going on?  I have gotten really good at walking by things that are on the floor!  It is like a game to see how long it will stay there before I notice that it is picked up.  Never thought I would say that I can’t wait to bend over and pick things up off the floor.

Larry has been getting our flower beds together, planting some flowers, mulching and moving some of our flowers that have gone crazy since last year….Daisies, etc.  We planted a new tree in the yard…it is a Crabapple…It is so cute.  My Dad got it last year at the end of the season on sale and he said that we could have it.  We can see it in the yard from our side window…..I love it.  After the flower beds are done we are going to create a bird area with bird feeders, and a bench.  I might even be able to help.  We have so many birds here..it sounds like a rain forest in the morning.  I want to have a place to sit close by so I can take some pictures of the birds….

School is almost out!!!  Julia had an open house at Lawrence North last night…I can’t believe that she will be a Freshman next year and Lauren will be a 7th grader!  I loved highschool and I hope that she will too!

Well that is all that is going on right now….

I told my Aunt Glenda that I would say a personal hello to her and my Uncle Jim….you guys may be the only people that read my blog!  HAHA

Hopefully we will get together this summer lots….we need to get a new grill because ours is broken…and what fun is a cook out with out a grill?

Love,

Lisa