Journal

Wow, did not even realize that I have been away as long as I have.  Where has the time gone?  First off, don't let the status of :( bad fool ya.  I am having pain, I don't feel okay, but don't feel THAT bad either.  Its at a level that I can deal with.

So much has happened since my last entry.  I did get results from MD Anderson.  What they called a large lesion in my brain, turned out according to them, to be yet another MS lesion just bigger than what I have had in the past and I guess bigger than what they normally see.  That was in late September.

Ray and I had a nice30th Wedding Anniversary on September 29th.  On October the first I drove home to KY.  That trip was difficult.  I remember when driving 13 hours non-stop was nothing.  It took its toll.  My sister Pam had her tumor removed on October 2, 2008.  In just over a weeks time or two weeks time the tumor had grown from lemon size to the size of an orange.  The surgeon said it was the biggest breast tumor he had ever removed.  October 2, 2008 was on a Friday.  The following days left us with the knowledge that she has ductal breast cancer and as I understand it, this type if the most common and is hormone driven.  She had 6 positive lymph nodes out of 9 removed.  The following Friday, October 9, 2008 found us again at the hospital and they removed her right breast.  Totally blew my mind that after each operation they released her to go home within 2 hours of coming out of the operating room.  I remained in KY until like the 23rd and then went to TN to see my best friend. For a couple days to unwind before heading home to FL.

My mom, bless her heart, saw me for the first time having difficulty with an MS attack.  The stress of the long drive, the worry of how the first operation would go, all that sort of stuff, brought on one heck of an attack.  I would MAKE myself get up in the mornings and go over to a large public park that has been dear to my heart since childhood.  In an attempt to just relax enough to become whole enough for the attack to pass quickly. Also in a big attempt for my mom hopefully NOT to figure out I was having difficulty.  It did not work.  On the 4th or 5th day as I was going to my car my mom said to me "Deb, you are taking way TO MANY pain killers" you are staggering and should NOT be driving. I could see she was deeply worried.  Had to tell her I was not taking a bunch of pain killer, what she was witnessing was part of an MS attack.  It was hard to make her understand, though some times my body staggers, my mind does not and I am fine when seated to drive.  Its when I have vertigo that I cannot drive - no matter what.  Because I don't live around family, they don't see the struggles that I have. They know I do struggle with MS and they know it puts me in the bed for days or weeks and even months on end.  However, that is completely different than seeing with your own eyes how some of the effects can be.  As much as I wanted to keep it hidden, especially with all that was going on with my sister, it was best to just come clean with mom so she would not continue to worry that I was over medicating myself.  This actually allow me to give myself permission to retreat to the beat and rest and allow my body hopefully to recover and to recover quickly.  Which it did, the attack only lasted about 5 days.  Once finally home from KY and TN, I was exhausted and went to my bed for about 2 1/2 weeks.  My sister Pam began her chemo in November.  She is still taking chemo once a week at the cancer center.  After tomorrow's treatment, she has 3 more weekly chemo treatments to go and then one treatment once a month after that for at least a year.  We are all praying that all the treatments she has been through will destory her breast cancer and it will not get into her organs.

The month of November, went by to quick.  Michael was home from college for Thanksgiving .  On November 12, 2008 my husband Ray was released from his job after 9 years.  It was due to the economy.  They were elminating position at every facility they have around the world.   At his facility 16 salary personnel were released all on the same day.  Another facility where we know people release 91.  Deep down, I truly suspect he was chosen to be released even though he had the highest seniority because of me.  In these hard times, I give serious consideration to if when selecting the personnel they were not mandated by the corporate office to pick people who had high medical cost.  Each visit to MD Anderson is 20 thousand dollars (on average) and I go there as little a 2 times a year and as many as 8.  The copaxone was over 5  thousand every three months.  However, unless I know each person that was effected by the downsizing there would be no way I could prove it.  Not to mention FL is a "Right to Work" state and they do not have to give a reason.  They did give him and the others a decent severance package.  When he told me I felt so bad for him.  He's only had two jobs in his adult life.  The first was 20 years in the military and the other was in this companies IT department.  I could only  hug him and tell him, it would be okay and the words of encouragement were to tell him " When one door closes, a window may open".

We have been truly blessed. He called a friend that had just asked him 2 months earlier if he would consider leaving the company he was with and coming over to his friend's company.  He had said no when asked.  He just said he appreciated the interest but he was happy where he was, was a dedicated and committed employee.  So, he called this friend and what do you know, the position is still open.  The friend who was on his way home from work, made a U-turn and went back and told his boss within minutes.  Within 24 hours, they had an updated resume.  Within a week's time he had been interviewed.   Being it is on the military base in a high security area.  He had to have certain security IT (computer) certifications.  He tested and got those within 2 weeks time frame.  He was offered the job in the month of December.  Again, we were blessed because when they began to do the work to get his security clearance started for the government, they discovered his military clearance was still active and only needed a quick update.  That not only saved a huge amount of time but also expense for the company.  In January he began work.  The time he was off work was nice because he was still receiving full pay and benefits from the his downsized position.  The new position, paid more, has a great benefits package as well, but instead of working nights and weekends, he works only Monday through Friday with weekend and holidays off.  After having him working nights for nine years it has been wonderful to have him work days.  I am now alone a lot less and we have a much more normal schedule life.

I stopped taking my Copaxone once my 90 day supply had ran out.  I was not seeing any improvement on my condition and it certainly was not slowing down the amount of new brain lesions. December found me once again doing test (brain MRI and spinal tap) that my MS doctor wanted.  Since the brain MRI in December I had again gained 3 new lesions.  I spent Christmas down flat on my back due to the spinal tap.  Ended up the hole from the needle did not heal over and I was leaking small amounts of spinal fluid making the pressure inside the spinal unbalanced.  Talk about a migraine if you even attempt to sit up.  After 4 days I was sent to the ER and they wanted to do a blood patch.  However, the doctor explained that I was going to end up down a couple weeks on pain killers just from that procedure and my back would hurt a great deal more than it already does. I chose to just lay flat until I stopped leaking spinal fluid naturally.  It took 10 days.  Don't want to do that again LOL.

January flew by and I truly can't recall much of what happened last month other than Ray starting his new job.  My family was effected by the ice storm in KY and I was greatly worried about my mom.  She has COPD and does breathing treatments and uses oxygen.  However, she was able to stay comfortable enough in sweats from the gas fireplace and closing off all the bedroom doors.  She has gas stove, so she was able to cook.  Her oxygen tank is not electric dependent, so no issue there.  She of course could not do her breathing treatments and we were all concerned she would develope a bad cold or a lung infection.  However, she did not and is doing well.  Thankfully my brother lives local and checked on her a couple times a day and took care of things.

Now it is soon to be mid-Feb and again I don't know where the month has gone.  As far as the MS, I'm still dealing every day with the pain.  I no longer take injections because they have proven not to be effective for me.  Because of my cancer we were limited to begin with, as to which treatments we could even try.  Now we are down to none.  Because I can't take steroids again due to the cancer, I have to continue my use of pain killers when all else fells to give me some relief and just wait it out.

Today I went to water aeroboics (sp) for the first time.  I FINALLY found a place.  I thought it was an indoor pool but it was not.  It is an outdoor facility with a heated pool.  I must admit it was SO NICE to be back in the water.  It has been way to long that I have not been in the Gulf of Mexico or even a pool.  I haven't been on my boat forever.  The temp here was 70, a little windy but once in the water it felt like heaven.  I especially enjoyed the water exercise.  It is only $4 for the class and then I can continue to swim or exercise in the water pretty much as long as I want after the class.  I did not know this place was even in the area, let alone to have water exercise class.  I will continue to take the classes 3 times a week (that's the plan :) until April.  I will then change over to the military base as I can attend their classes and use their gym at no cost being retired military.  Its just right now they do not offer the classes as they use it to certify scuba divers in the winter months.  Yeah its a VERY deep pool LOL.  That will be a good time for me to change over as it will be getting warmer and warmer here and the strength of the sun will be strong.  I cannot be in the sun and I can't take the heat.

I am hoping my sister is able to come visit in late March or mid April after she gets her weekly chemo completed.  She has never been to my home and had plans to come when her cancer was discovered.  The month of May will find me in Orlando area as our son will graduate from college.   Then the heat and the power of the sun will really be on us.

THIS YEAR I AM going to get me a cooling vest and I am praying that will have a positive impact so I am not house bound from April to October as I have been.  Maybe it will actually allow me to spend some time out to be around other people and do a few things.  That is really something to get excited about especially when just walking a short distance (3 car lengths) to the mailbox sucks the life right out of you so badly that you have to lay down and sleep for 4 to 5 hours, after you finish knelling over the john until you get dry heaves.

So, a lot of positive things about life and how good God has been to us.  Some plans for the future in hopes and attempt to actually not be a prisoner in my own body and home.

No I did not go to MD Anderson last month as scheduled with the change over in my husband's job and over fear that if I do and once they see the cost they may find the excuse to downsize as well.  Know its a dangerous thing to mess with, but I have been staying stable and right now it is a risk that I feel I have to take.  You know with the economy.  I just don't worry about it, God has a plan and everything happens for a reason and things fall into place.  So life is good overall and I'm bless to still be here.

Hugs

Deb

Here I am 49 years old and lying to my mom.  Actually NOBODY except those that read this even know that I have a journal here.  My husband doesn't even know.  We heard back on my thigh biopsy which they said was perivasular (meaning inflamed blood vessels).  Good news is it is not a subq or intransit met from my cancer.  We have been still waiting to here from MD Anderson about the local MRI that was Fedex to them.  Of course the damage and power outages from Hurricane Ike has slowed that all down.

THE LIE:  I told my mom today that I had heard from MD Anderson and that everything the MRI showed was MS related.  Heard a big sigh of relief on her end.  Not that acitive disease is great news but compared to active cancer in the brain it is.

Actually I have NOT heard back from MDA they are still getting back on their feet.  I did go and get the report and just acted like I already knew what it said and had spoken with my doctor.  Just that I like to keep a record of all the reports.

The report says they again see more MS lesions, active disease, white matter, FLAIR (whatever the hell those are).  It says "There is an enhancing focus in the left periatrial white matter measuring approximately 7.3 mm in greastest dimensions.  While this could be related to active plaque the possibility of metastatic disease could not be excluded.  Direct correlation with prior films is needed.

Which means I still need MDA to compare this MRI to the one they did on July 29th to know for sure if this is MS or the cancer.  I will send an email next week to see how they are doing with getting back to normal and to make sure they have not forgotten me.

REASON FOR THE LIE:  I have 2 older sisters one is 54 and the other 53.  Pam (53) went to the doctor recently and they found a mass, within days they had her scheduled for Mammo and ultra-sound, within days of that an appointment with a surgeon.  Today she saw the surgeon and on Monday they are doing a biopsy.  We are talking in less than 2 weeks they have done all these doctor visits and test and now set up for Monday.  She is scared to death.  She hasn't asked any questions.  She has given the medical people the authority to speak with mom.  They just told her that everything is showing very abnormal mass.  All indications is that it is breast cancer.    Then my oldest sister today tells me that she also has found a lump in her breast and now needs to get it checked out as well.  I don't believe she has told our mom.  I can't hide my cancer or my test because the entire family knows my history and how often I'm seen.  We are all super worried about my sister and of course my mom the worst.  No parent wants their child to deal with cancer no matter what the age.

So, yeah I lied.  I said I had the results and it was all MS when I don't know yet.  I did so because its to much for any parent to deal with - having 2 daughters waiting for results.  One to see if she has breat cancer and the fear because of the size alone that if so it is advanced.  The other with a history of cancer, cancer treatments.... waiting to see if it has moved into the brain.  Just to much.  I would hide all of mine from her if I could.  She is 72 years old and has COPD.  She is not a healthy person herself.  Our dad passed away at age 53 and over 30 years of marriage.  He had prostrate cancer from agent orange.  A blood clot hit his heart a day after surgery.  They never removed any cancer, opened him up and closed up.  The cancer was too wide spread.

I had thought of going home to KY for her biopsy but now will wait.  They said it will be up to 5 days befor they have the complete path report back. 

I am going to try and go home like maybe October 1st.  Ray and I have our 30th wedding anniversary on the 29th.  I would like to be here with him, as we have been through so much with my health in 30 years of marriage.  But I will head home if they go to do anything sooner with my sister and just to be there for her.

She knows I know how it feels, how scared you get, how many thoughts go through your head.  Though a different type of cancer - cancer still strikes fear and makes you realize that you will only reach the ripe old age of 80 or so with the grace of God.

I have no problems dealing with cancer myself, but I take it hard when somebody I love has it.  I want to fight it for them, because I know what to expect and all that goes with it.  She does not know that and I pray so much that this will turn out to be something odd but not cancer.

Venting here and praying, for my sister and my mom

Hugs

Deb

Think I'm gonna see if this site has a breast cancer group. Knowledge is power.

I had the biopsy done on my thigh.  The doctor said 7 - 10 working days before we get the results.  It is sent off to a derm pathologist.  So, some time this week I should hear the results.  Tuesday after Labor Day I had the brain MRI done as directed by MD Anderson.  My doctor at MD Anderson called a local facility and ordered the scan.  They said it would take 24 hours to read it and then they would send it on to Dr. Papa (my cancer doctor at MD Anderson).  I'm thinking maybe he got it Thursday or Friday.  They usually send scans (on CD) by Fedex.  So waiting on that this week.  Finally thing we are waiting on this week is to see what Hurricane Ike is going to do and where it is going to go.  I so hate hurricanes.  I love FL with the exception of the months June through September.  So damn hot that it is impossible for me to get outside. I am sick within 5 minutes and throwing up.  The month of August is the worse not only the hottest month but hurricanes usually begin in August and run through September.  The season does not end until November 30th, but thus far have not had any experience with one past the first week of October onward.

So, I'll post again, once I know the results of the biopsy and the brain MRI.

Wishing you all a good week.

Deb