Friday, December 24, 2010

Merry Christmas

I was reflecting today and went into my cancer forums to see if everyone was doing okay, to give some consolation and a hug if needed as these individuals were there for me during the last 7 months.  A few of the posts were not as uplifting as mine and that saddened me.  I consider myself so blessed to be celebrating this Christmas cancer free and I thank God for that every day since I found out the NED status.  But...things can change and I know that.  Many of the people going through chemo and radiation for metastases and recurring cancer did not expect that to happen to them.  My heart aches for them and my prayer focus is now on them.  At this season of miracles I suppose I naively thought that everyone would have a miracle.  It is not to be so for some.  And, in thinking about all this, I almost feel guilty for being NED.  I know I should not, but I do.  I suppose this is part and parcel of having cancer, surviving cancer and being in a forum and group with others with the same disease.  Not everyone will be healed, not everyone will be well.  So for those individuals I say a small prayer tonite that they will have a peaceful holiday season and 2011 brings for them some uplifting news and health. 

To all of you who follow this blog, I wish you the best Christmas ever, a wonderful New Year - may you all have happiness, health and prosperity.  Thank you once again for being there for me, for lifting my heart and spirit when I needed it lifted and for your prayers because I KNOW that those prayers worked in more ways than just my NED.  Love to you all, Marilyne

Friday, December 17, 2010

The wait is over...

Just got a call from my surgeon's nurse about results from biopsy... malignancy noted.    I am officially NED (no evidence of disease).   Today starts the first day of the second part of my life...I'm overwhelmed.  I'm so grateful.  I just keep thanking God.  What a Blessed Christmas this will be.  Miracles do happen.

Again....I do not believe this would be possible without my medical team fighting so hard, and without the prayers and love and thoughts and cards and letters that you all sent to me.  The prayers got me through it, the prayers took Harvey away and the prayers made all this possible.   The proof is in me:  God listened. 

Love to you all and a Blessed Christmas to you all....Marilyne


Hello Everyone...back in here for a small update.  Had a biopsy done a few days ago - had colon surgeon visit a few days before that and he scheduled the biopsy.  I asked if harvey had shrunk more and he said yes.  However, when I read his report from November he noted that he would do a biopsy if the tumor remained the same or got larger.  Naturally, I was concerned.  This last visit though, he seemed 'less' concerned but still wanted to do the biopsy.  I base his concern level on his voice and body language and he seemed more relaxed this time.  I asked if it was to confirm or deny cancer was still there and he said yes, that is what it was for.  I also asked him before the biopsy when the results would be in and he said either today or Monday he hoped.  So once again I wait.  My feelings right now are neutral (not optimistic or pessimistic) only because my team has done everything they can for me in this area to rid me of harrvey and God will do for me what He thinks is the best for me. I prayed for healing and I trust that in one way or another that healing will occur. I will be back in here when I hear the results of the biopsy.  Continue your prayers please.  I have no doubt, no doubt whatsoever that your thoughts and prayers got me through treatment with minimal difficulty and now even after treatment continues to attack harvey with gusto.  The saying "Prayer Changes Things" has taken on new meaning for me since this diagnosis.  It truly does.  I'm proof of that.

I've learned a great deal this year with this diagnosis.  I have learned that a diagnosis of cancer is scary but does not have to mean the end of everything.  I have learned that there is a lot of waiting to this disease, a lot of ups and a lot of downs.  Optimism and discouragement can come within five minutes of each other which can play havoc on your mind.   I've been reading many books on the disease (as well as some fun fiction not related to the disease).  "Anti Cancer" is one of the books my forum cohorts recommend and I'm currently reading that.  Facinating book - discusses why some people are more susceptible to cancer than others and how cells grow, etc.   Rich bought me a Kindle as an early Christmas gift so I could download books to read while I was in the aiting rooms for these dr appointments as sometimes we are there for a few hours.  It's good to be busy and reading helps pass that time.  I love my Kindle but I think Rich might be getting annoyed with the charges of my downloading books. :-)  I was able to actually download the Bible for free! 

Christmas is coming up quickly.  I'm trying to catch up wrapping gifts and doing my cards.  Not sure if a letter will come this year but we shall see.  Wishing you all a Blessed and Loving Christmas season...a season of miracles and love and joy - may we all experience them.  Be well always, Marilyne

Thursday, December 9, 2010

Harvey Update

Just returned from colo-rectal surgeon's office.  Harvey has shrunk some more!!  That was the good news.  There is still a small nodule left and the surgeon wants to do a biopsy to rule out any active cancer.  He could not give me any indication either way as the biopsy is the only way to tell.  So, next Weds I have surgery scheduled for a biopsy. Not sure how long it takes to get biopsy results but I am hoping that the Christmas present I asked for this year is realized.  All I want for Christmas is NED.   Keep praying everyone because I KNOW it is your prayers and thoughts that have gotten me this far.  Will be back in here after the biopsy.  Love to you all, be well always, Marilyne

Sunday, December 5, 2010

Week of Judgment

Hello Everyone, it's been awhile.  Hope that you all had a wonderful Thanksgiving.  I'm in here now because this Thursday will be my return to the surgeon to check on Harvey and his hopefully melting demise.  If Harvey has melted more, then the surgeon may leave me alone for three months and watch...or he might do a biopsy anyway.  If Harvey has not gotten smaller, I'm positive he will do a biopsy. The biopsy can come back positive or negative.  If negative, then they will leave me alone for three months.  If positive, then I am assuming that the next step will be an APR (abdominal resection).  So...the worse can scenario is the APR.  I have three chances on this going well:  1) no tumor 2) markedly decreased tumor and biopsy that comes back negative; 3) no decrease in tumor but biopsy comes back negative.  I will be happy with 1, 2 or 3 and pray for those outcomes.  Pray for those outcomes too...I will need your prayers for this this week.  Thursday is the appt.  Will come back in here on Friday.  Thank you for being there and being so supportive.  Love to you all, Marilyne

Friday, November 12, 2010

November 12, 2010

Hello Everyone - came in here today to apologize if my post yesterday was a bit somber.  It was how I was feeling.  Today I feel much better...energized...ready to fight again.  That is what this is, a constant fight, a constant battle.  It can get tiring and discouraging to do this day in and day out.  Then to hope for one type of news and hear another...well that really can put a crimp in one's day. 

Yesterday was crimp day.  Today is fight day.  I'm back on the battlefield a little worse for wear but back anyway.  Just wanted you all to know that.  Thanks for being there.  New battle cry:  Hooo Rahhhh....DIE HARVEY!   Be well everyone else....Love Marilyne

Thursday, November 11, 2010

November 11, 2010 - The Journey Continues...

Had my colo-rectal surgeon visit today which is the culmination of post scan visits.  Was hoping to hear better news than I did but it still could have been worse. The surgeon did both manual and scope exams and felt a small mass still there, much much smaller than Harvey was to begin with which was also on the scans.  The scans he said were very good and he was happy about that.  However, there remains something in there.  He wants to see me in four weeks to do another exam and if this mass shrinks, then he will see me again and monitor it, if it continues to shrink (radiation still is working) then it will be monitoring.  If it does not shrink, then I have to have a deep biopsy under anesthesia where they can ascertain whether or not it is active or non-active cancer.  If non-active, they continue to watch it.  If active then I will have to have an APR surgery which means having bowel removed and a permanent colostomy. 

That news broke my heart as I've been feeling well, energy level up and all plumbing systems working well...some residual side effects from chemo and radiation but nothing I can't handle.  I will need to simply digest all this and put myself in another level mentally, then move forward.  Today was a tough day but not as tough as it could have been, not as tough as other people have it and not as tough as I might see in the future.  The journey continues, the fight continues.  Please keep saying prayers that the remains of what is there just withers away and is gone.  I wish I had better news.  Maybe next time.  Love to you all.  Marilyne

Monday, November 8, 2010

November 8, 2010 - scan results so far

Had meeting with my two oncologists today and the news was mostly positive although both were somewhat reserved in giving me any actual NED news.  Harvey is down to practically a pinpoint in the scans, however, there is still a hotspot in that area (that pinpoint)  that they cannot ascertain if it is still active cancer or residual dying cells or scar tissue from the radiation.  I will not know any of this until Thursday when I have my dr appt with the colo-rectal surgeon.  He will do a DRE (dr exam) and maybe scope and biopsy what is left just to be sure.  Until I hear him say to me that it is NED or T0N0I I am remaining calm and reserved about the outcome.  I'm cautiously optimistic.  I'm telling you though, seeing the before and after scans I was stunned at how that treatment kicked Harvey's butt - he was HUGE.  Even the rad oncologist said she could now tell me, he was a very large tumor and they had to be aggressive with him which might give me some residual side effects...I'm feeling some of them now, stiffness in the legs and hips, muscle weakness and so on.  There are times I have to move around a lot in order to be able to walk straight.  So this might be my 'new normal' and you know what, that is okay.  Living with hip and leg pain is better than living with cancer or not living at all.  I will take what God gives me and be thankful for it.  So we shall see what we shall see.  Just wanted to keep you guys updated as soon as I could because I know you'd want to know.  Now I am tired.  Was at hospital from 8 until 5 today again.  Long waiting hours to actually not find out too much but more than I knew yesterday.   Love you all for being there. Keep praying to be sure the residual is just that...scar tissue and nothing more.  Be well, Marilyne

Friday, October 29, 2010

October 29, 2010

Hello Everyone....had my MRI and PET CT today...long long grueling day but they are now over with.  Next step is to wait until the 8th when I see my oncologists.  My cohorts at the Rare cancer forum have alerted me that there still might be some hot spots and irritation and not to freak out.  According to them the Nigro protocol especially the radiation continues to work for months after treatment ends.  Many had some hot spots light up at 3 mos but gone at six.  So I will be patient and keep praying and keep watching my health.  Sorry I do not have more news but will be back in here in a week or so and let you know what the oncologist and colo-rectal guy says.  I feel pretty confident and good today.  Glad the tests are done.  Thank you for your thoughts and prayers -- I felt them all day today.   Love you all, Marilyne

Monday, October 25, 2010

Scans on Friday

Hello everyone.  Hope that this blog update finds everyone well and healthy.  My three month scans (first once since treatment) will happen on Friday.  I have my MRI at 12:30 and the PET CT at 2:00.  I won't know the results of these scans until the 8th or 11th of November.  I meet with my oncologist and rad oncologist on the 8th and the colo-rectal surgeon on the 11th.  I'm hoping that my rad oncologist is the one who gives me the news as I really like her.  She was very curt and business like when I first met her but now we talk like we are old friends.  She is quite compassionate and knows how to alleviate my fears.  She also had cancer which is why I think it makes her a better doctor in understanding the emotions of her patients.  I'm still having my home boutique show with 6 other crafters on the 5th and 6th...I decided to do that simply for sanity reasons and to keep me focused on something other than the scans, diagnosis and cancer.  Is it working?  Well, not really but I find I think about it less than I would have if I didn't have this to focus on.  I have an outside show in West St. Paul on the 20th as well but by then I will know the results.  I think it is better to be busy than delve on things. 

The next time I come in here it will be when I have the results of the scan and what the next step will be.  I hope and pray that Harvey is gone.  Please keep up the prayers and thoughts.  They get me through the worst parts of this diagnosis and recovery.  I love you all very much.  Be well always, Marilyne

Sunday, October 17, 2010

October 17, 2010

Hello everyone.  I thought I would come in here tonight because of all the strange roller coaster emotions I'm feeling.  In 12 days I have my first three month scans.  These scans will show whether Harvey is indeed gone.  I pray he is gone, I feel he is gone but again there is that mustard seed of doubt that creeps into my daily living and haunts me.  I'm more emotional lately, and I find myself quickly irritated and anxious.  My cohorts tell me this is quite normal and part of this process.  Once someone is diagnosed with cancer, that fear of it not being gone or recurrence is always there.  It fades somewhat after scans show NED but as the months pass, the anxiety and fear crops up again.  I wonder if that feeling ever goes away...perhaps after years of no scans and no issues, maybe.  I just had to come in here and express those feelings and get them off my chest and perhaps place them in this box for a little while.  Please continue your prayers and thoughts.  As always, I appreciate your being there.  Be well, Marilyne

Monday, October 4, 2010

October 4, 2010

Hello Everyone - just a short update.  One month from yesterday I will be going for my first three month post treatment scans (MRI and PET-CT) to ascertain if Harvey is gone.  While I remain hopeful and optimistic that he is indeed gone, there is that small mustard seed of doubt in my heart.  Please continue your wonderful prayers and thoughts...they have gotten me this far without much pain and trauma.  Each day I get a tad bit stronger.  Heartbeat is still high if I exert a little bit but I think that is to be expected yet.  After all I'm only starting week 7 from treatment and while I feel like it is 7 months post treatment rather than weeks, I realize I need to be kinder to my body and just appreciate it has gotten me this far. 

I will be back in here probably the week or two before the scans.  While you try to forget you have cancer in between, the scans bring you shockingly back to reality for two weeks out of the three month spans they take.   To that end, I am having a home craft show the weekend of Nov. 5 and 6 to keep my mind off my own scans and subsequent Dr. appts the following week with results.  I have not made any new items but am having 6 other people bring their items over along with mine which alleviates the stress in my making new least for this show.  I enjoy setting up so much that I do not think it will be a hardship on me plus I plan on setting up the displays weeks before the actual show to take my time...

Rich seems to think I am back to my 'old self' because I'm doing  a few more things than before and I admit I've been nagging on him a lot more lately which is probably why he thinks I am back to 'normal.'  I keep telling him there is no back to normal.  Those who have been through this know there is only the 'new normal' and physically, mentally, spiritually and emotionally one is never the same.  I personally think life is better because of this, not worse - maybe not for Rich with me nagging him again - but for me it has taken on deeper meaning.  Just being reflective today because a long term friend of mine from NJ has her second scan for lung cancer this Friday and in solidarity, am feeling her anxiety and apprehension.  My prayers and thoughts will focus only on her this week. 

Be well everyone, Marilyne

Wednesday, September 22, 2010

September 22, 2010

Hello Everyone - just a short update.  Went to my five week post radiology treatment and saw my rad-oncologist yesterday.  As Rich and I approached the hospital area I was stunned at the intensity of emotions that came over me and I started to cry.  I was not sure if I was crying because the hospital reminded me I indeed did have cancer, or whether I felt 'safe' back in the arms of the team and hospital group or simply fear of the appointment itself.  Once I was able to walk in the door to the radiology area I was not as emotional at all but went into 'deal with it' mode as I had so many months and weeks before that.

The regular questions were asked about symptoms, swollen legs, blah blah how are you doing blah blah.  I mentioned that I was not feeling that bad considering, symptoms mild from my cohorts so far and I was worried that maybe treatment wasn't working.  My rad oncologist (who is wonderful) decided to give me a DRE (exam) which I had not had since diagnosis and said her preliminary findings are she felt soft tissue and no lumps so she felt it was working.  Obviously without scans and biopsy I won't know for sure but for the first time since all this happened I felt a glimmer of hope and the heavy weight on my shoulder lifted a bit.  She also asked me if I was okay with not seeing them until the November scan dates because this phase of treatment, many patients feel abandoned.  Ironically I do feel that way a little bit but not totally, I suppose I feel close to my team and trust my team to know if I need them in between they will be there.  So she made the appt with me for November 8th.  My scans are the 3rd and the team will meet the morning of the 8th to discuss my case and I will find out the results probably from her that afternoon. If not her, then my colorectal surgeon on the 11th.  Either way, I will know for sure that second week in November.

Keep up your wonderful prayers as they have taken me though 7 weeks of aggressive chemotherapy and radiation and now through recovery and I hope NED status.  Thanks everyone for being there for me - love to you all.  Be well always, Marilyne

Sunday, September 19, 2010

September 19, 2010

Hello everyone.  Nothing new to report - will be going to the rad-oncologist on Tuesday for a one month post treatment.  Side effects, while minimal and acceptable, remain.  It is quite possible they will remain with me for the long haul as there are short term and long term side effects.  My thought is: bring it on if I do not have the cancer to deal with on top of  it I can handle the side effects.  It's just a matter of having a bit of ingenuity and flexibility...

I wanted to come in here for a few reasons.  First, for all of you who have been praying for me, your prayers are being answered every single day.  I have no doubt about that.  Each day brings some type of blessing for me and I know that it is because of your thoughts and prayers that God is watching out for me in so many wonderful and surprising ways.  Second, while cancer is a scary diagnosis to hear, it changes you (it did me) in ways I cannot fully explain.  I have become stronger mentally, physically and spiritually - especially the latter - I 'see' things around me that I never noticed before and appreciate them more now than I ever did.  Someone said in my cohort cancer forum that they were 'fortunate' to have been diagnosed because they were forced then to re-evaluate their lives -- appreciate their families, put less pressure on themselves, appreciate the surroundings around them. 

My reflections today come from my sitting outside on the deck for a little bit and just taking in the sights, sounds and smells around me.  Why had I not noticed this all long before this?   I think it was because I was trying to control my life all the time, keeping busy, shoving 'things to do' in every empty spot, making sure that I never had time to reflect or enjoy much around me.  I do not regret some of the things I did (like go back to school or go back to work) -- I truly enjoyed doing these things -- but on the down time I should have taken it slow, given myself a break, relaxed a little bit...that is what I regret.  So if any of you reading this are doing just that and not taking time to truly enjoy your life and loved ones around you, stop and do that now.  I no longer write lists - I figure what will get done will get done when it gets done.  No more multi-tasking and trying to fit in 4 things in one hour.  No more stressing out over things I have absolutely no control over.  God has handled every aspect of this treatment and recovery and He will handle the rest as well.  That simple. 

I will be back here after Tuesday to update if there is anything to update.  Today I'm attempting a trip to Cub foods and will drive Lola, my car, for the first time since May.  This should be an interesting adventure.  I hope I remember where all the buttons and dials do.  Hopefully it won't rain as I have the feeling my windows will go up and down as I won't remember where the wiper button is... lol.    Rich will be going with me but won't be driving--I won't let him.   For those of you who do not know this, he had minor hernia surgery on Friday - he did survive the operation but to hear it now you would think this was a five organ transplant.  That's okay, he deserves a little TLC going through what he went through with me and being by my side.  The cancer actually postponed his surgery as he had this hernia a week before I was diagnosed and put it on hold until I was done.  It felt good taking care of someone else for a change. 

I hope all of you are doing well and are healthy, safe and happy.  Thank you again for everything you have done - in prayer, in sending a note, in sending an email.  I re-read them every so often -- read the prayer books you sent me daily and pull close to me the treasures of love and caring that were given to me.  Know that all that was so greatly appreciated from the bottom of my heart.  Be always well, Marilyne

Monday, September 6, 2010

Just a short update...Happy Labor Day to everyone.  This Wednesday marks the three week anniversary post treatment.  I half expected with this anniversary I would be up and running and being like I normally am.  Well, that ain't happening!   I am able to take a shower now and wash my hair without being too winded.  Need to rest less in between attempting small chores.  So...I am thinking this is progress even though my patience is wearing thin on myself (and is carried on to rest of family unfortunately).  Keep praying for continued strength but most of all keep praying in November Harvey is gone.  Love to all of you.  Marilyne

Thursday, September 2, 2010

September 1, 2010

Good Morning everyone -  Two weeks post treatment.  I was reminded today that it is two weeks, not three when I was lamenting as to why I did not have my energy level back.  That shocked me.  Has it only been two weeks?  The days blend together and each day, while I realize now since I have ended treatment, has gotten slowly better and better, in my mind I should be full of vim and vigor and able to leap tall buildings in a single bound.  But when I will my body to do something, it just simply says "no way" and I'm forced to listen.

I had my two week oncology visit today.  They did an EKG as my heartbeat was 130.  Has been high for a few months.  They think it is fluid loss and also rad and chemo and being run down.  Its getting better as I can now take a shower without laying down for 15 minutes afterwards feeling like I did an aerobic exercise.  They took blood but do not know what the levels are.  I should know in a couple weeks when I see my radiologist for a followup.  We set up the telltale scan meetings.  Early November I'm having my MRI and PET scan that will see if Harvey is gone.  Then a follow up with my oncologist and the colo-rectal surgeon who will go over the scans and do a physical as they want to be sure he is or is not gone before proceeding to the next step.  My hope is that I come up NED...what a neat Thanksgiving and Christmas Gift that would be!  So keep praying that Harvey is toast.  I appreciate and am thankful each and every one of you is there.  Be well always, Marilyne

Saturday, August 28, 2010

August 28, 2010

Hello Everyone.  It's been a little over a week since radiation treatments ended.   While I totally expected to bounce right up a few days later, I am finding recovery to be very slow and for me, annoying.   I wake up, take a shower, have to lay down to recoup from the shower.  Then I walk downstairs and make a little toast and tea and have to recoup from that.  I'm up a lot at night because of the healing of the radiation area - lots of itching and burning.  Finding the sitz baths help the most during the day but are harder to do during the night.  My cohorts on the cancer forum gave me some good suggestions but mostly alert me that this will take time.  Supposedly the recovery period goes quickly -- quickly for me is one or two days.  I think I will need to rethink this and relax and just let my body heal.  Difficult for me but maybe it is God's way of telling me I need to slow down and relax and enjoy my life a little instead of having to always be busy and running here and there.

Just a short update.  Not much to report.  I have a doctor appointment right after labor day and will update then if there is anything to update.  I'm sure, like me, you want to hear that Harvey is toast.  But that won't be for a little while yet.  Meanwhile, Be Well everyone.  Love, Marilyne

Saturday, August 21, 2010

August 21, 2010

Nothing new to report.  This morning I was able to take a shower and not have to nap for 15 minutes afterwards...which I think was a very good sign.  Made it downstairs to have some toast but that took the wind out of me so I had to rest. This is the part I hate the most - recovery.  I want to be jumping around and doing things now that treatment is over but I have to realize this type of 'treatment' is not the same as having a general surgery.  General surgery you are sore and tired and healing yes and that takes a couple weeks to a month to feel good again.  Radiation and chemotherapy, well, one gal on the cancer website said they give us toxic chemicals that would kill another animal and the radiation lasts in our bodies for months after treatment is can we expect to bounce back from that in a few weeks?  I suppose so.  Still, for someone like me who loves being active and involved in everything, it is mighty discouraging.  This is why I shared the milestone of not napping after a shower this morning.  I'm hoping that these small milestones, these tiny little advances each day will make me realize that this is the way it is and I need to be patient.  I think I will squeeze my farting hippo today and thank God that I do not have treatment next week.  Look at the positive side to all there are many of those sides. 

Rich will be going back to work in the office next week.  He keeps asking me if I am okay with that.  Of course I am.  I will be fine.  He took good care of me while this was going on and he has a life and job to deal with.  I will be fine on my own.  In fact, it might even help with the healing that I am on my own for awhile.  Thank God half the food and restaurants around us have delivery.  lol.    This step just makes me feel that normalcy might be coming around the corner.  While my cancer buddies tell me that I will need to find a new 'normal' in my life as this goes on, I find old normals in things like Rich going back to work on a daily basis, even me feeling like picking up my crocheting for a few rows.  The regular "normals" and the new "normals" - ah...I so look forward to both of them. 

That is about it from me this week.  I will write again only if there is a major change or update.  Be well always, Marilyne

Thursday, August 19, 2010

The love that surrounds me...

I do not know if I have mentioned it yet in this blog, but each day when I sit at the couch or chair in the family room I have all these wonderful pieces of love and caring around me:  cards and letters from you, a prayer blanket, flowers, angel plaques and statues, cookies, stuffed animals and bracelets.  I have prayer books that I can look at for daily inspiration and trust me I read them faithfully.  All of these wonderful pieces of love that surround me every day and are from all of you who made sure that I had pieces of you there with me throughout this journey.  What a wonderful testament to friends and family and the joy of having such tremendous support at a time when it was needed the most.  I just wanted to thank you for all of that.  It meant more than you will ever know.  Be always well, Marilyne

Andrea, I do not have your home email address and I was too emotional to call you today but will do so either at weeks end or next week but I thank you for the flowers I received today.  What a wonderful surprise.  Love you, Marilyne

Wednesday, August 18, 2010

August 18, 2010

Well, I had my final radiation today, met and was discharged from radiation with the rad oncologist and made a follow up appt with her for four weeks.  The oncologist I will see in a few weeks as well...all follow up. 

Radiation and chemo are done for this phase of the process.  And while a short process, an incredibly difficult one.  I am so happy that it is over.  When I left the hospital today after the last radiation, I broke down and cried.  Not that I would be leaving anyone or miss anyone but the weight of the treatment program lifted off my shoulders and I actually felt relief.  The crying was simply my way of letting it go. 

Now, it appears the way it works is I wait a few months and then have an ultrasound and a PET scan to see if Harvey or his spawn are still there.  If so, then I think they decide to do surgery to remove what is left and if they cannot then they remove pretty much part of my colon and rectum.  I may have to have a colostomy bag at that point.  That is Plan B.  Plan A is Harvey is gone and they monitor me for the next five years every three months with scans and doctor visits.  I'm praying that the cancer is gone but it was pretty high up so my chances are 50/50.  Unfortunately I will not know any of this until November or December.  This treatment is not cut and dry and once over you know right then if everything is gone.  It takes a while.  While somewhat discouraging, I still am pumped and excited that the therapy is over for now and will try to start eating right, taking vitamins, exercising, and doing all the right things to at least keep my body in other areas somewhat healthy.  I wish I had definite news for you but I won't for awhile.

Again thank you all for being there for me during the treatment portion of this roller coaster ride. I am convinced that your prayers and thoughts have taken me through this treatment and made the side effects less intense than others have had to go through.  The oncologist even said that I handled everything very well and I know that it was not just me that did that.  It was the support of my family and friends and prayers and love that got me through this.  Not sure how I managed to get into italics but it happened.  So I'm leaving it that way rather than try to fix it.  

For now, treatment is over...I will not know much more for awhile.  If anything changes, I will come in here and write more.  Meanwhile, know that I love and appreciate every one of you for being there for me during this incredible ride.  It meant a great deal to me to have your prayers and support.  Be well always, Marilyne

Sunday, August 15, 2010

This is what I figure Harvey pretty much looks like now, or will after the next three sentiments about this are simply:  Go to Hell Harvey, and don't come back.

Talk to you after the next three rads are done unless something unusual well everyone, Marilyne

Thursday, August 12, 2010


Just wanted you all to know that I'm back from the hospital.  Chillaxin' as Justin says.  Not doing much.  Rad treatments start again on Monday to Wednesday (last three) and I'm hoping then I can relax a little bit until the CAT scan tells me if Harvey is gone or not.  I was supposed to have the last three treatments last week but a flood in the main area of the radiation/MRI area prevented that.  Soooooo, we are prolonging this torture for a few more days. 

I will write more when I know more.  Hope everyone has a great weekend.  Be well, Marilyne

Tuesday, August 10, 2010

August 9, 2010

This blog post is actually being written while I am in the hospital through the wonders of technology – we hope the ‘operator’ of the technology is able to do his part.  He will be copying/pasting (or attempting to) put this update in for me.  Hopefully it works.  He wanted me to embellish the blog a bit and put in that I have now become a lab rat and case study for the U of M med students on how to rid someone of the runs.  First med student that figures this one out gets a gift card to Popeye’s…lol    

Well, since I do not have my blog to see what I posted last on it, the short version of what has transpired since they removed the last round of chemo is I spiraled downhill from there.  Frequent bathrooms runs (and I mean frequent, like every 15 minutes) left me totally dehydrated.  I was being infused every other day while gong to the hospital for rad treatments.  By Friday I knew I was down to four treatments even if I was feeling miserable. 

 The oncologist scheduled me for a rad treatment on Monday followed by saline infusion to keep up the fluids so I would be able to get through the week.  Well, Friday evening I started running a fever…100.4 is the cut off to when I have to call in and alert the hospital.  It was 101.6 when I told Rich and by the time he got me to the hospital (after we called and they said come to the emergency room) it was 102.6.  I was immediately put on IV antibiotics and fluids, had blood drawn and put in a room of my own after a few hours.   

Since then I’ve been blood tested no less than 16 times for various bacteria which could be causing the fever…there are lesions from the radiation that were swabbed and sent in for analysis and anything else on my body they could physically send in, they did.  So far everything is inconclusive…they all agree that this feeling like road kill that I feel right now is the direct result of the chemo and radiation and they are trying to figure out how to, at a minimum, keep it from running rampant.  I guess in order to kill Harvey and his insufferable spawn they have to kill healthy cells, which include cells in the digestive tract. 

For all of you who have ever gone to Mexico and experienced the revenge of Montezuma, it is because some bacteria got into your digestive tract and your system was having trouble fighting off.  Well, my system has no immunities right now and cannot fight off anything so rather than bother, it just sits back and lets all hell break loose.  So…the game plan right now is they are giving me (ready for this one?) OPIUM!!  Yes, three times a day I have to drink a small amount of opium.  I keep waiting for someone to bring in a water bong and a couple of hippies to walk in and join me.  So far, it appears to be working.  By that I mean my bathroom visits are now every ½ hour rather than every 15 minutes and at one point I made it to an hour.  Progress!

Enough toilet banter – each day gets a little bit better than the day before but in tiny increments.  For someone who wants things changed yesterday, this is very discouraging for me but I keep thinking okay, two steps forward, one back is still getting me ahead each time.  Did not have radiation treatment today as I guess the group met and decided I needed one more day of rest.  I believe they will have me back on radiation tomorrow but since I will already be at the hospital should I have ‘issues’ everything is here.  

This place is absolutely amazing and run like a well oiled machine.  I intend on writing a long letter to someone here expressing my gratitude in having such a wonderful experience through such a horrible ordeal.   Once I get home (ETA know is unknown but I am assuming this weekend) I will write a longer blog.  Thanks everyone once again for being there, for being my support, for praying, for all the things you do to perk up my day and push me forward.  I could not have done this without the support of my husband, sons, daughter-in-law and my many, many friends.  Thank you.  Be well, Marilyne.

Friday, August 6, 2010

August 6, 2010

Am almost ready to leave for Rad treatment number 28 - how did I get this far without losing my sanity?  Perhaps because the cumulative radiation and chemo damage did not rear their ugly heads until this last weekend.  I was warned that the end weeks would be tough.  And while I was not having fun during the treatments, I felt I was managing them quite well until this last Sunday and I hit square on, a huge brick wall.  Ouch did that hurt.  Now I am dealing with chemotherapy and radiation damage to my whole digestive system.  I was spared the mouth sores thank you God but everything else is just one big molten mess.  Constantly on pain meds to keep the pain at bay helps, but I do not like feeling so tired and sluggish.  I like moving around and being productive, having a purpose, helping others.  It feels alien to me to be on the other side of this scenario. 

I am looking forward to coming home from this rad treatment and laying down a bit downstairs.  Have not been doing that lately as it seems more comfortable being upstairs in my own bed.   Right now, Mallory is laying next to me purring away.  Hope that she will still be here when I return as she gives me comfort laying next to me as I try to cope...pets have such a wonderful way of loving you through anything. 

Again, I'm sorry this is so short and not full of the vim and vigor as some other posts.  In order for Harvey and his Spawn to be destroyed I have to go through a form of destruction myself.  A tear down so to speak so that everything can be built back up with healthy cells.  Next post I will have what I think Harvey looks like now.  Thank you so much for your kinds comments, your cards, your emails, your uplifting notes and goodies - I cherish every one of them and I cherish you for being there.  Be well, Marilyne

Wednesday, August 4, 2010

August 4, 2010

Tomorrow would have been my dad's 103rd birthday had he lived.  He was 96 when he died.  Tomorrow is also the day Rich and I met 33 years ago. After tomorrow all I have left is 5 more rad treatments.  How odd that these memories intertwine with one another around the same day that I have fond memories. 

Am not writing as much in here because the treatment is wearing heavily on me.  I have 6 rad treatments left after today and I literally have to crawl out of bed to shower and get dressed and drag my sorry butt to the car.  All I want to do is have the rad treatment and come home to curl in a ball with my pain and exhaustion and just sleep.  Everyone said this would be the worst part and they were not whistling dixie.  It truly is.  But in my heart I know that Harvey is suffering for it and I will do anything to get rid of him.  Keep praying please as these prayers and thoughts are what get me going each day to finish the treatment out.  I love you all.  Be well, Marilyne

Saturday, July 31, 2010

July 31, 2010

End of Week 5 and beginning week 6.   Only 9 more radiation treatments.  Today, the second chemo pack comes off after 96 hours of constant chemo.  For those of you who have been praying for me to get through this therapy, know that those prayers have been answered.  Both chemo sessions have been very uneventful and compared to my cohorts who have been very sick and even hospitalized, I consider myself quite blessed and Thank God for giving me this blessing and Thank God for all of you who have been praying for me, sending me little tokens of caring and words of encouragement.  Not much to report as I'm just extremely tired and do a little bit at a time and then take a nap.  Very sad for someone like me who likes to move at Mock 5 all the time.  I am assured by my cohorts that my energy level will slowly start to return when the therapy is over.  I so look forward to that.  So, for now, this will be a short blog.  Just wanted everyone to know the status and will be in here again in a few days.  Be well, Marilyne

Tuesday, July 27, 2010

July 27, 2010 Week 5 - Chemo cocktail

Good Afternoon...just returned from an 8 hour stint at the hospital.   We had to be here at 8 AM this morning so I could have my PICC line put in, then be at radiation at 10 AM, then meet with my oncologist at 11:00 AM.  Unfortunately, the Chemo pack infusion was not until 2 PM so Rich and I walked to the cafeteria and had lunch there, then I fell asleep for an hour in the hospital waiting area and Rich worked the whole time.  Thank God for computers and technology and cell phones.  I don't know how I would have done this without him and without his wonderful company allowing this to be done.

I admit I was very anxious about today.  Receiving chemo the first time I had a very uneventful session.  I've read on my cancer forums of a few people having to go to the hospital with low counts, mouth sores, violent illness and I feel like I did not have anything at all near that (guiltily so).

My doctors assure me that Harvey is getting his own butt kicked and not worry.  This chemo session they gave me my usual 72 hour nausea meds, my ativan, some steroids - something new to jump start everything) and the mito (tumor antibiodic that is very toxic) and then finally gave me my 96 hour baby bottle to carry with me for the next four days).  Then it will be removed with the picc line on Friday or Saturday.  Woo hoo.  What I have then is one full week and four days left of radiation and I'm done.  So far I feel okay.  I cannot complain compared to others going through this.  Your prayers are working if you are asking me for a seamless treatment.  God is obviously listening.  And I thank you for that and I thank Him for that as well.

Know that I appreciate your listening to this, sending me wonderful notes and emails, cards, small goodies that I carry with me to radiation or treatment - my chemo bag is so heavy Rich has to carry it now...these tokens of caring and love are what keep me pushing forward.  I have learned a valuable lesson...when someone is ill, regardless of the illness, something as small as a card or call or note means the world.  I will forever make sure that I continue this with others and pay it forward. 

For tonite, I will end this blog wishing everyone a wonderful evening and a blessed life.  Be well, Marilyne

P.S.  Forgot to add a funny story that happened last night to me.  When I was ready for bed, I had to find a place for my chemo pack which is attached to the picc line in my arm by a long tube.  It dispenses chemo from a 'baby bottle' to my line to my heart based on my heartbeat 24/7 for 4 days.  Anyway, did not want it laying next to me on the bed for fear I'd roll over it or pull out the line so I decided to attach the fanny pack to the headboard and it became a perfect stand with which I could sleep and the chemo was being dispensed from a higher area plus I would not have to worry about rolling over on it.  Well, I do not sleep well due to pain and irritation and just anxiety I guess and by 3 am had to go to the potty.  I jump out of bed (the bathroom is right across from my side of the bed) and get pulled back quite quickly by the bungee cord tube from my chemo pack.  I had forgotten it was attached to the bed post.  So here I am sitting on the floor on my backside laughing by myself at the absurdity of it all.  Unhooked the pack and went about my business. Thank God this pack will only be with me until Friday or I might end up with a concussion or a broken bone somewhere in there.  lol.   Thought you would get a kick out of that.  Be well, Marilyne

Wednesday, July 21, 2010

July 21, 2010 Latest Picture of Harvey

Harvey is not feeling very well.  He's had four weeks of chemo and radiation treatments and he's starting to show his slow only comment to this?   DIE HARVEY DIE!!!!

Monday, July 19, 2010

July 19, 2010

Week four begins and with it the normal Monday anxiety.  When this week is over, I will have had 19 radiation treatments and will have 14 left to do...I keep hoping that I will not experience the burns and irritation that my counterparts have experienced but from what I have heard no one dodges this bullet.  My symptoms are slowly worsening but from what I gather this is the norm.  I am very tired.  I know a lot of this is short lived and I suppose for Harvey to be obliterated it is necessary.  I will do whatever I have to do and face whatever I have to face to make sure he is gone for good. 

I have figured out that my week starts off with Monday high anxiety, Tuesday and Wednesday lesser anxiety but more tiring because of the long days with dr appts and blood tests but once the hump day (Weds) is over, anxiety lessens as I near Friday and two days off for the weekend.   My friend Kari came to visit me on Saturday for a little bit and I enjoyed her visit but was surprised at how tired I was after she left.  I guess I have to realize that even though our visit felt like a 'normal' visit, I still am dealing with cancer and treatment so my body is not in 'normal' mode.  It was an interesting revelation to say the least.  I keep wanting to do what I did before and have the stamina as before but my body is saying 'hell no' and I am finally starting to really listen.

Today  is Rich's and my 30 year wedding anniversary.  What a milestone that is.  Who would have thunk 30 years ago that we would be spending our anniversary at the U of M so I can go through radiation.  One never knows what life will throw at them.  At the hospital today I met with my oncologist (had to go back twice to the hospital as I messed up an appt - poor Rich driving twice to Minneapolis) and she informed me that I will get an ultrasound on Thursday to find out what the pain is in my forearm (its the arm I had my PICC line in and the vein is swollen much lower in the arm).  She wants to be sure it isn't a blood clot but rather an inflammation.  Then next week I start my second round of chemo.  Tuesday will be a very long day.  I have to have my new PICC line inserted, do my radiation, visit with my oncologist and then have the chemo cocktail given to me.  If my blood levels continue to lower I will have to give myself shots over the weekend as well.  My Gosh, this all came up quickly. 

On the way home I was trying to digest all this information and I had a mild panic attack.  I suppose it's because I know it has to be done, there is no other recourse here, but at the same time I am not guaranteed all this will obliterate that slime bucket Harvey.  I won't know if Harvey is gone until three months post treatment when they do the scans as the chemo and radiation continues to kill him even after treatment is over.  While I remain hopeful about this I also have to be realistic. I visualize Harvey gone and that is that.  Just got a little overwhelmed today with everything accelerating now.   Keep praying.  Love to you all.  Be well, Marilyne

Thursday, July 15, 2010


Rich reminded me of some other things my newfound friend from the hospital said...just to give you an idea why I was so amazed with her and I thought you would get a kick out of his answer:

"Your new-found friend, what made her unique, is she is relatively young – early 40s – and has a very rare type of breast cancer.  She had already had a lumpectomy and was on her fifth type of chemo drug.  The first was so toxic to her it put her in the hospital for five days.  After chemo is over, she still faces radiation and a mastectomy….that would simply crush most people….yet, she had that attitude….WOW!

Plus, you should have mentioned I was there when you were ‘sniffing’ Danny (HA!)"

Wednesday, July 14, 2010

July 14, 2010

I know I was not going to come back in here and report on anything, as nothing really has changed.  Moving right along with blood tests (white count low so I have to be really careful of infection now) and everything else as well as can be expected.  Am in the hump day of Week 3, as the week progresses I become less anxious and more relaxed anticipating a weekend 'off' so to speak.  It gets grueling going to Minneapolis everyday, not just for me but for Rich although he doesn't complain.  He sits upstairs in the waiting front area, sets up shop and works.  Then I go do my thing and come back upstairs to meet him.  He doesn't have to go to radiation with me or for the weekly catch up check ups.  I have my phone so if something comes up he needs to be privy too that I can't tell him later, I call him and he comes downstairs.  We have a pretty good system going now.  Sad we even have to have a system but we worked it out well.

You meet some interesting people at these hospitals and everyone is friendly because the patients are all there for the same reason and the staff is there to comfort them.  I love the U of M medical facility.  I met one of the schedulers and front desk people (Danny) awhile back.  He smelled really nice so every time I went by I would sniff him.  He thought that was funny.  Bought me a little spray bottle of what he wears so I can sniff when he isn't around.  If it weren't for him I would not have gotten all my paperwork and cd's of the PET scan.  Have met others who have sons and daughters in chemo/radiation. The stories they tell - and not just them but their families where cancer has ravaged not just one generation but three and four and they are all there to talk about it. 

Yesterday when I was returning from my rad and chemo doc visit there was this girl decked out in all tie dyed fabric with a large peace sign necklace.  Her friends reminded me of people I knew in the 60's, laid back hippie types.  All very friendly and warm.  They were there to support her, as she was there with breast cancer and was staying at the local 'hotel' they have for treatment patients since she lived so far away.  She was this alive, excitable, warm human being.  Suffering from more than the breast cancer, she just exuded life, enjoyment, make the best of what you have type of attitude.  I immediately liked her.  She also had a box with dozens of cupcakes for her 'chemo' party.  I was privy to a cupcake and even her napkins were tie dyed with peace symbols.  We chatted for about half an hour and learned about one anothers treatment.  We took a picture together, hugged and a new friend was made.   It wasn't the new friend that impressed me, it was her vibrant attitude.  She kept saying she doesn't sweat the small stuff anymore.  Why bother.  It's just small stuff.  I'm beginning to understand this and find myself not caring anymore about the little things that used to bug me because in the scheme of things, they do not matter.   I suppose I say that out loud now to those of you who read this blog...look around you.  I'm sure there are things in your life that you worry about that really are not important.  What is important is your family, the relationship you have with your spouse and children, your extended family and your friends.  Don't take any of them for granted and appreciate them even with the flaws you might think they have.  Let them know you care.  Hug them a lot. 

Did I mention that Harvey isn't giving me as much trouble lately?  I can sit without feeling like he's trying to get out and bite me.  Either he is hibernating in there or he is shrinking or dying or melting or whatever they do when chemo and rad hits them.  One gal on the chemo site said her doctor said that once the tissue reaches necrosis (dies) it gets absorbed by the body from healthy cells and is then disposed of out of the body from there.  I thought that was interesting although I have not come across anything on that yet...will have to research that.  Meanwhile, I shall end for this week and wish everyone a happy, healthy week and weekend.  Thank you all for being there for me.  I believe this journey is going so much better with all of you accompanying me with your prayers, love and concern.   Be well, Marilyne

Monday, July 12, 2010

July 12, 2010

Nothing to report.  Went out and about a little bit on Saturday to Walmart.  Shopped quickly as I am not as comfortable out in public (pain and stomach issues with chemo/rad) but it felt good to be out and about.  Rich drove, I have not driven now since surgery at the end of May.  Just do not feel strong enough (dizzyness hits or tummy issues and I just do not want to venture too far just yet).   Bought some fabric to make baby blankets (for a fundraiser and future craft shows) and some little goodies I needed.  Rich bought a coffee pot to make coffee at home since he's telecommuting while I'm going through this (and for that I am so grateful having him here).  The good news about me not going out as much is I'm not spending as much...the bad news is I'm really proficient on the web -- love getting little packages of fabric or crafts or such in the  Hey, a girl has to do what she has to do while going through this crappy quirk of fate.

This week starts week 3 of 6.  Am experiencing some minor burning (like a slight sunburn, nothing severe but its starting).  I have a crisis kit I put together from information and suggestions from the American Cancer forum I belong to and put that together before anything started which has come in handy -- I can reach into my bag of tricks to try out different creams, pills or candies to alleviate different symptoms.

Reading other people's posts on the forums has made me realize that so far into this treatment I am not experiencing what others have experienced.  I know everyone is different but so far my symptoms are relatively mild.  I'm very tired, have low BP and dehydrate easily but I have no mouth sores like others have, no reaction to the chemo cocktail that others had for their first one and am experiencing minor discomfort...however that could be the calm before the storm and I'm not about to fool myself.  Keep praying and touching base as I believe these prayers and connections are keeping me pushing have become my strength along with my family here in Minnesota with me.  Know that I love and appreciate you all for that.  Unless something drastically changes, I will probably not be back here until the start of Week 4.  Be well, Marilyne

P.S.  I hope Harvey is really feeling the heat right about now.  I am visualizing him 1/3 gone since I finished two weeks of treatment out of 6.  Take that Harvey!!!!   Not a good feeling losing your tentacles and  maybe a foot or two.  Hope you are melting away like the wicked witch in the wizard of oz.....mwahahahaha

Thursday, July 8, 2010

July 8, 2010

I need to apologize for a somewhat somber post a couple of days ago, just had a moment of 'reality' -- I think when someone is given a diagnosis of cancer so many emotions go through your mind that it takes awhile for the truth to sink in.  After talking to my radiology oncologist, I felt a lot better.  She herself has had cancer and that made me realize she really knows what this is all about from personal experience.  So, today, while still very tired, I emotionally feel better.  Plus I'm sitting here squeezing Bart the Farting Hippo while Rich is trying to make me a smoothie. 

There really isn't much to report at this point.  Radiation is moving along, I've gotten the series down pat -- my favorite part is seeing the radiologists coming around the corner because then I know I can stretch out and move. Does not take long really, maybe 15-30 minutes depending on them matching all the dots and lines and tats with the machine's dots and lines and then they radiate all around about 10-12 zaps in each quadrant area - I think 6-8 quadrants.  I keep losing count because I'm counting the zaps.   Then I get anxious for the last one to finish and forget to count.  lol.   Tomorrow is the last rad treatment for week 2 and I am looking forward to two days 'off' so to speak.  Thanks everyone for your support, love, prayers and thoughts.  I will be wearing my Jersey Girl pink hat courtesy of Pam and Andy for each session from now's to give Harvey a little anxiety and a visual that I mean business!  There was a joke out awhile back that pertained to the devil but I'm replacing that with Harvey's name.  It said something like "be such a person that when you wake up in the morning and your feet hit the floor, Harvey screeches 'holy crap, she's up!"   Be well, Marilyne

Tuesday, July 6, 2010

July 6, 2010

Weekend over, was somewhat restful in that I did not have to travel to Minneapolis each day.  This morning had to get up at 6 (did not sleep well, some anxiety, I just think there is some stress involved driving back and forth each day, receiving blood tests, taking radiation that wears on one emotionally and physically, but until this morning really did not feel that.  Perhaps I was running a bit on adrenaline as well pushing myself a bit last week.  I was determined to fight the fight but perhaps I expelled more energy than I should have and need to back pedal a little bit now.  I still have after all, 5 more weeks of this treatment and it gets worse before it gets better.  So today I'm physically and mentally tired. 

Each day I find a little goodie in my mailbox - a card, a small token, a personal gift and countless emails wishing me well, or responses in here wishing me well.  Know that they might seem small to those who send them, might not seem like a lot to do but for me, means the world.  It gives me a lift that I cannot compare to anything else.  Right now I'm wearing my pink "Jersey Girl" cap -- This gave me the added umph I needed today to kick Harvey's butt -- I have a rep to protect and to 'represent' my Jersey Girl status.  lol.

So this week will be my second week of radiation.  Three weeks of this alone without chemo, then the final week chemo and radiation.  It does not seem like a long time does it?   I feel like a Marathon runner right now doing a 6K  and I'm heading into my second mile.  Tired but still not yet at a point where I do not want to run anymore.  I'm sure that will happen in the last few weeks.  And when that does I will remember this one runner from a race many years ago, can't remember her name, but she came in last and was dehydrated, her muscles were not working well on her legs but she refused help.  She literally limped to the finish line...but...the point was...she MADE it to the finish line.  I keep picturing her.  If she can push to the end, so can I.  Doesn't mean I have to be first to finish, but simply to finish. 

Not sure how I will feel as the weeks progress so forgive me if these blogs get shorter or not as descriptive or if I go off the deep end sometimes and become philosophical.  This blog is to express what emotions or physical issues are going on as the journey progresses.   Cancer is an insidious disease, regardless of where it shows its ugly head and there are a lot of variables to the way people handle chemo and radiation and the disease itself.  I have always kept journals of my life and wrote whatever emotion I felt at the time, good and bad based on the experiences I had at the time.  This blog is no different.  I won't be hiding much in here so read at your own risk.  I hope then to have this to add to my other journals as a point in my life that has come and gone and one I learned just how important living, family and friends are in one's life.   Good news is so far fevers are gone.  At least for the last four days.  Woo Hoo.   Be well, Marilyne

Friday, July 2, 2010

July 2nd 2010

Fourth of July looking forward to my neighbors shooting off their usual fireworks so I can watch from my deck.  I keep envisioning the future months, when it is Labor day, my treatment will be over and I'll have had two weeks to begin recuperating.  It gives me a point of reference to focus on. 

Sorry I've been lax being in here, our days are very busy going back and forth to the U of M.  The team just is right on top of everything and leaves nothing to chance.  I've been running those damn fevers (I hate Harvey, he SUCKS) which zaps my fluids (chills and then sweats) so I'm frequently dehydrated and my BP lowers which for me is not good, my BP is normally low (110/70) but now sometimes goes to 70/60.  So I had one infusion and tomorrow they will do a four hour infusion (I have to learn to change the bottle myself when that is done - Rich offered to watch to see how it is done to do it for me and while he was never a hands on type of guy like this before, he's really meeting this challenge head on...I'm overwhelmed by his devotion and tenacity.  Keep in mind this is the World Cup season!   And he is still there, right by my side.  Thank God for DVR's. LOL.

Then they remove the picc line tomorrow too which I'm happy about.  It might help with the fevers although they think it's Harvey being obstinate.  Jerk.  Did I mention how much I hate him?  I do not think there was anyone in my life I have actually hated.  I try to find good in everyone and sometimes it was minuscule but there was always something...with Harvey, there is nothing I even remotely like about him. The only thing I would like is him gone, dead, zapped, eradicated, extinct and taken to hell never to come back again.  Hmmm, I think I should be more expressive about him, THAT felt good! 

Wanted to come in here and wish you a wonderful Fourth of July weekend.  Thank you for the prayers, the thoughts, the sending of positive and loving warmth.  I'm also starting to think having visitors might not be so bad - maybe my cocooning is slowly starting to dissipate or maybe the pain pills I'm now taking have clouded my mind enough to just say wheee, who cares, so you may have to have a couple drinks or a pain pill too to communicate with me on that level before you visit.  I still have my moments and try to use humor to nail those moments...sometimes it works, sometimes not.  I find myself crying for the stupidest things...Rich will buy me some treats from the store and bring them home and I'll cry, I read an email or card and I cry, the poor little gecko on TV got sucked up the mail shoot and I cry.   It's pathetic.  So, be forewarned.  Either I will be goofy and high or sobbing and incoherent.  All part of the package...all part of the diagnosis...all part of the treatment and all part of the recovery.  Know I appreciate and love each and every one of you.  Be well, I probably won't be back in here until after the fourth.  Tuesday will be a long day - visiting my oncologist and having Rad #6 and the start of week #2.   Be well, Marilyne

Wednesday, June 30, 2010

June 30, 2010

Day 3 of tretment - Well, what should have been a short rad treatment and followup with rad onc doc turned out to be another marathon day.  Because I've been running fevers (chills and sweats) the doctors are monitoring me closely.  My BP was very low so I had to have an infusion of liquid today as well as some blood work and testing to be sure there isn't an infection.  They think it is a tumor fever as a few other people have come in with mild fevers too.  It was also decided to remove my PICC line on Friday at 12:30 when they remove my chemo kangaroo pack I've been carrying around.  I'm glad.  It's on my right arm and difficult for me to clean or flush with saline every week to keep it from getting infected.  If I had the port put in I could have taken care of that easily as my right hand would be available.  Next time I get a PICC line in will be when I have my final week of tratment.  Hopefully by then Harvey will be toast. 

I love all your comments and savor the love,prayers and thoughts you send through this blog.  I reread them constantly, when I feel down or when I need to energize my fight.  Know how much it is appreciatred and welcomed.  I send all of you a huge virtual hug.  Real hugs right now would do me in...I cry so easily.  Feel like one big wimpy baby at times but I guess that is to be expected.  Okay, going to grab Bert the Hippo and get settled in for the night.  Tomorrow is Day 4 of treatment...only 30 or so more to go...whoo hoo.  Love you all, be well, Marilyne

Tuesday, June 29, 2010

June 29, 2010

Day 2 of Rad and chemo. So far pretty uneventful. Keep praying. I am more coherent today (they gave med some relaxing drugs when I had PICC line put in and needless to say I was 'relaxed' -- so some of my misspellings and vocabulary errors were blatantly screaming out at me this morning when I re-read them. Rich does not want me writing, driving, cooking, walking or talking while on this medication again. Seems I was walking around with my farting hippo and doing some damage with that as well. I apologize for the inconsistency in my blogging yesterday or from now on I will give you a warning that I am drugged and read at your own risk. :-)

Will write again with next doctor visit or something becomes more eventful. Be well, Marilyne

Monday, June 28, 2010

PICCS and Radiation and chemo oh my!!!

Okay,whichever one of you was praying this morning for me to have an eneventful session, consider it done.

We arrived at the hospital at 8:00 for an 8;30 radiation treatment. The treatment itself takes about an hour the first time as they need to measure and set you in the case plus focus the beams in the right areas. Then the zap Harvey. A few minutes in each spot all around my pelvic, hip and backside area. It is painful i the sense the muscles tighen up right now - you have to very still while this zapping is going on. To take my mind off the discomfort I just kept saying with each zap...that's for you Harvey, Take taht you s.o.b., whose your daddy now, huh?? (Maybe I should not have watched Mr. & Mrs. Smith last

Then we went to Fairview Hospital and I was given a PICC line (the nurse was wonderful, knew exactly what she was doing - only a pinch for novacaine) - then an xray to make sure the picc went to the right vein and then back for my infusion of the purple stuff (strong chemo cocktail) and wait 1/2 hour for symptoms and then the chemo gal came and set me up. She is going to come back in 96 hours and remove the bottle and leave the port thing for next time. Its all good. Just very very tired.

Going to take a nap and see if I can keep drinking more water. Love you, Mar

Friday, June 25, 2010

June 25, 2010 - Simple Thoughts

The last few days I've been having a virtual 'conversation' with a woman on one of the cancer sites who came in, verbal guns blazing through a facade of realistic thinking that took the wind out of my sail as well as others on the forum. The negativity, anger and ugliness that she exuded was more than I could bear. I wrote back. First just stating an opinion and offering friendship and listening to which she slapped my hand. Basically she said the forums are cult followings that instill happy feelings where there should be none and realism is not well accepted at these cancer sites.

All I can say is I was happy we were all not sitting around a big circle in person at some type of therapy because I would have leap across the room and slapped the crap out of her. Suffice it to say I made my own point and I will not be writing her again in the blog but ignoring her, no matter what she says. Negativity, anger or pessimism is not in my vocabulary and I refuse to listen to it.

Chemo/rad starts Monday so I do not know how often I will be in here. If I cannot and a week goes by, I will have Rich come in and write a little blerb - but then I need to teach him how to do this on my laptop. Oh boy.

Know that I appreciate each and every one of you. Be well, Marilyne

Wednesday, June 23, 2010

June 23 - Nothing Remains Constant

Well Harvey is really irritating me now. My port was canceled for tomorrow due to the low grade fevers I've been experiencing and instead tomorrow I need to go for an abdominal CT scan to be sure there are no abscesses. Monday I will have PICC line installed instead and do my first radiation --- providing the other scans and another blood test come back okay. I hate you Harvey. Drop Dead. Everyone else, Be well. Marilyne

Tuesday, June 22, 2010

June 22, 2010 Meet Harvey

I created a sketch of what I believed Harvey looked like and put it up on my recovery wall. My son Justin took it home and embellished it quite a bit to come up with the end product pictured here.

I'm visual. I need to 'see' what I am fighting. And this is about as good as it gets.

So...I'm introducing you all to Harvey and hope you hate him as much as I do. Keep praying...he's a nasty little sucker. Be well, Marilyne

Monday, June 21, 2010

June 21st

Just a short update. My port will be implanted on Thursday as outpatient surgery. I also am supposed to wear a medical alert bracelet now that says that I have an implanted port. I guess it helps the medical staff if I need blood, fluids or whatever to ascertain they do not start stabbing my arms with needles when they can use the port already implanted. Should be an interesting procedure. I will be in twilight sleep. I like that. You are 'awake' but you really do not care what is going on around you. Exactly how I want to be for this procedure.

As it stands now, I start radiation therapy on Monday 28th. I am pretty sure they will hook me up with a chemo pack to also have beginning Monday and will probably remove it on Friday. Not sure how that works. I know I have to have it on for at least five days (chemo).

Good news is my hippo arrived this morning. I am trying to keep some semblance of sanity and humor throughout this insane surreal period in my and my family's of the things I asked Rich was if I could have a puppy and he said no (realistically a puppy would do me in right now, perhaps later on though....) However, I wanted something warm and fuzzy to hold now and then and to be near me during stressful moments that was not human. I was watching NCIS (one of my all time favorite shows) and one of the characters, Abby the Goth forensic scientist, who I love because she is so bohemian, has this hippo she hugs when she is upset on the show. The hippo, when hugged, emits a loud gaseous sound. I thought THAT is what I need.

Thank God for Google because I found it - albeit in England - and ordered it. Arrived today. So far, I have hugged my little hippo dozens of times to Rich's dismay. He's a cute little bugger, about the size of a small dog...and every time I get annoyed at Harvey, I hug Bert the Hippo and I feel a lot better. I have a feeling I will be hugging him a lot over the next several weeks. If I am able will post again on Friday, otherwise over the weekend before the real roller coaster ride begins. Be well, Marilyne

Sunday, June 20, 2010

June 20, 2010

Harvey was acting up last night. Had a fever of 100.6 and thought I might have to go into the hospital. Tylenol gets rid of the fever but doesn't allow them to try to ascertain where the fever is coming from or why. Blood work good, tests good, everything seems fine. No sore throat, no cold. I just think Harvey is sitting there trying to be devious to postpone Chemo and my port. Well my doc has another idea if we can't do the port. I don't care how sick I am...Harvey is dead meat and on my radar!

On another note, all you dads reading this blog (HAPPY FATHER'S DAY!) Richard is happily sitting downstairs watching parts of the World Cup and I'm sure that is a great gift for him - us leaving him alone to do so. Will write more during the week after they figure out why I have fevers and if and when the port/picc line is put in. Be well, Marilyne

Thursday, June 17, 2010

June 18 Friday

First, just a general comment but an important one: I re-read some of the responses you all have made to this blog - and I'm sure I will be doing that often over the next months. I can honestly say that the family, friendship and love that comes through your posts take my breath away and make me feel so enveloped in warmth and safe. I am so blessed to know and love you all. So blessed. Not everyone is writing in the blog -- there are countless numbers of emails as well, cards in the mail, thoughts and prayers. I just feel overwhelmed by it all and wanted you all to know how much your thoughts, prayers and caring mean to me. More than you will ever know. It is the wind that will carry my wings through whatever I need to fly through.

Today Rich and I went to the U for my 'simulation' - they retrofit you to a mold that holds you in place while they zap the hell out of Harvey. They were writing all over my belly and I asked " I have to rewrite on myself in sharpie or watch how I bathe or shower not to take the lines away?" and they said well, you can do that OR you can get three little tattoos. Tattoos? So I asked about it. Three small pinpricks and I don't have to worry about whether the lines disappear or not. So I said okay. So now I have three red dots on me (permanent) and black magic marker. I always wanted a tattoo. Red dots are not exactly what I had in mind but under the circumstances, they will do.

While I was there Rich called the oncology nurse about my low grade fevers. They are concerned about it (no duh, so am I). Another positive about the U of M campus is everything is right there...oncology, radiology, surgery, hospital - whatever you need it is there. So the onc nurse talked to my onc doctor who suggested I be checked out for any type of infection they might have missed or to be sure the original surgery site wasn't infected. While I was there a urinalysis was needed as well so I just had to walk across the street and around the corner and covered all those bases. Grant it - the visit went from 8 am until noon - again - but this is how thorough they are. Even for my radiology I have a card with bar code on it and all I have to do is scan myself in and they take me in the order I get there for my zap. (Take that Harvey).

I still feel bad about Rich having to drive to the hospital so much and more over the next five weeks. He brings his laptop and sits upstairs when conductivity is better and does his job...I can't imagine this is easy on him although he never shows he is upset or angry or frustrated. I picked the right man to marry. I'm not sure anyone else would be willing to step up to the plate like this.

Okay, game plan now is to have the port implanted next Thursday rather than Monday to give antibiodics more time to work - don't need fevers - and then Chemo/Rad to start the following Monday. Chemo Monday through Friday from a pump I will carry on my person and Rad every day Monday to Friday. After that Rad until the last week and then the chemo/rad combo once again and then I'm done. If everything goes the way I hope it will, I will be done around mid August with treatment and then I can start to heal.

Harvey will NOT win. I won't let him. My family won't let him. My friends won't let him and my wonderful Medical team won't let him. Be well, Marilyne

Wednesday, June 16, 2010

June 16, 2010

Today I thought would be a quick visit to the oncologist, more information and home. Rich and I were there from 9 AM until 1PM. The team that I have is phenomenal. They work in tandem like a fine tuned clock. My oncologist spoke with me for almost two hours as well.

The whole treatment program will be 5-7 weeks long. This means I will be going to the U of M every Monday through Friday and meeting with my radiologist every Weds to make sure everything is going okay and meeting with my oncologist as well once a week for her to be sure everything is going okay, having blood drawn---they watch you like a hawk so my initial concern with all these chemicals in my body how will they know if something is amiss? How will I know? They are so on top of it and I have umpteen numbers to call day or night. Amazing. I feel like I have this special lifeline to the medical staff and that gives me peace. While daunting and a bit overwhelming for me to think about all this that will be going on, at the same time, I feel comforted by the fact they are so diligent. How diligent? when I mentioned I had a fever the last two evenings, the chemo doctor called my surgeon (head of this team) and he prescribed prophylactic antibiotics plus take a chest xray and blood work to be sure my white count was good and I wasn't anemic. That's why we were there so long. Thorough. My life is in their hands and they are taking this more seriously than I am. I felt absolutely secure and safe in their hands.

Friday I go through a simulation where they measure everything to pinpoint where radiation will be zapped - assumption is they will do the suspicious nodes first just in case the little spawn are in there of Harvey's and then as time goes on start to give Harvey a piece of their (and my) mind. He's a big sucker so they will need to be very aggressive...which means I will be getting the brunt of it by week 3 or 4 when immunity is lowest and symptoms start to accelerate and appear or get worse. Right at this moment my thought is: "Bring it on" -- remind me of that in the weeks to come when my mantra might change to "oh ^%$#, get me outta here!".

Monday I'm having a 'port' put in - not wine, unfortunately although that would be a nice addition to the chemo and bloodwork. It is a device implanted under the skin of my collarbone where they can infuse the chemo (which will be attached to me in a small container) 24/7 for five days the first week of radiation and the last week of radiation (if my body holds up). It can also be used to give me blood transfusions if my white count lowers and also to take blood to check my levels. I have to learn to wrap this in plastic wrap around my port to keep it dry when I take a shower (maybe the press and seal will come in handy now that I purchased in bulk from Sam's club and didn't really like using as it bunched up every time I tried to wrap some food.

I started putting together a tote bag filled with everything I possibly could need to get through the treatment weeks based on what my new buddies on the ACS site and blog have suggested. What a great site. I'm sorry we all have to be in it but the camaraderie and caring of individuals who are going through this or already went through this is unbelievable. No matter what emotion I am going through at the time (and trust me the roller coaster of emotion is so profound it is hard to explain) I can go into this site and express it and know there will be quite a few coming on who get me through it with their words and encouragement or advice on how to cope. Then there is the humor. The stories they tell during what might have been a difficult time, sprinkled with humor at the situation. Each area infused me with hope and love and virtual hugs. From them a different hug because they are on the front lines like me and know it from a different personal perspective. From you, who know me, just being there with support and love means a great deal to me. I'm still not quite ready for 'real' hugs yet. My emotional side is so sensitive that I cry at the least little thing. A real hug would unleash more than I could handle right now.

I need to face this in a different way than Richard or the kids are facing it yet I'm not sure how to do that or how I am going to face that. My faith I think will carry me through a major of the times I am alone, facing the treatment or dealing with the effects of it. In between I will heavily depend on the emails and posts and cards and my ACS emails to pull me through plus my family being around me. I'm glad the World Cup is going on right now because I'm sure it is taking some of this insanity off Rich's mind, Justin and Meg have their own space to detach and focus on their lives, even though I know they care and would be here in a heartbeat I'm glad they are away to be able to detach. Brandon still is here and while his girlfriend is supportive and her son keeps his mind occupied, he is still here seeing the brunt of this and hearing what is going on. Just when I think Brandon is not really grasping what is going on, he will do something that makes me realize he does know but is internalizing it all which I'm not sure is good.

He came home from a funeral the other day (his girlfriends grandma) and he hugged me harder than he ever has in his life - he's not a hugger - so this was highly unusually and he was crying. When I consoled him for having to deal with his first funeral and sadness he said it wasn't that, he realized what was going on with me. The look on his face and the sadness and fear in his eyes were enough for me to push through this whole treatment program. It is my 'raison d'etre' right now to forge ahead and push ahead. Simply that look on my son's face.

I don't know how to face Harvey right now. I want to believe that I am strong enough to get through this but at the same time I'm scared of it. From what I have read and heard from others, once you have cancer, it hangs over you like an albatross - even when Harvey is gone and toast, there is a chance he will come back...there is a chance the radiation will create a new different type of cancer later on. You are left with scars that go way beyond the physical. From what I gather, the best way to beat cancer is to LIVE each day regardless of it. And that I am trying to do but it is not easy.

Next post will be after the 'simulation' on Friday where they retro-fit me so to speak for the CT that will be zapping me with radiation. Be well, Marilyne

Tuesday, June 15, 2010

June 15, 2010

Today I decided was my new birthday. Okay, my second birthday from my real one. Because today I was officially diagnosed with Stage IIIa cancer or T3N1M0. T means the size of the tumor and I was staged at 3 because Harvey (I named the ugly sucker) is over 5cm. Had he stayed at 3cm or so, I would have been staged a II. Node involvement appeared to be less on the PET than MRI so they decided by the looks of the scans there was little or no involvement and put me at a N1. Possibly one or two specks in there but maybe not. The M0 is my favorite one. Means no mets to anywhere in my body and believe me they looked everywhere. While a Stage IIIa sounds ominous, for me, it was good news. It gives me a fighting chance.

Had all my tests done over three days last week and results were in the computer when I met with the radiologist/oncologist. My one hour appt turned into two hours and I had so many questions answered and so much information given to me. They are very thorough. My regular doctor (the jersey guy) met with his team and they posed this plan for me for treatment. I will be getting 30-33 zaps of radiation and chemotherapy in between. A grueling cocktail but if it gets rid of Harvey and any of his microscopic spawn floating in a few of the lymph nodes, then I will deal with the side effects. Plus they are big on pain killers and while I'm not, the doctor told me to put aside any of my thinking that I will get through this on Tylenol - take the meds given and it will be easier on you. So I will listen. However, if I start acting like Hugh Laury on House, someone send me to treatment.

I have to go tomorrow to see the oncologist because I was late for that appt because the radiologist had me too long. So I see her tomorrow and hear about the chemo side of the cocktail. Too bad Tequila wasn't part of the treatment. When I meet her I will hear her side of the story. Then Friday I have to go back to radiology and be fitted with this body thing in a CT machine and marked and noted so the physicists can calculate where to exactly point the rads at my body. Interesting. I'm to expect a lot of different side effects from both treatments and I have them marked down. If I experience them I have ammunition to deal with them (cream, drugs, anti-nausea drugs, more drugs and maybe a drug or two for good measure). If I do not experience the worst, then I will be thankful and make a quilt that day. I have no where to go, nothing to do that is pressing for the next few months so that will be when I push to heal and get through treatment.

Thanks for being there and for reading this blog. Today a great weight lifted off my shoulders knowing the cancer had not spread. That was my greatest fear. Thanks for all your prayers because I know they markedly helped. Be Well, Marilyne

Monday, June 7, 2010

June 7, 2010

Well, the roller coaster ride has started and I got on even though I hate heights - speed is okay, but heights and then major drops kind of unnerve me - but with this ride I have to expect that and will get on anyway. My mantra years ago used to be 'feel the fear and do it anyway' and I'm not about to stop now.

Today there was a whirlwind of activity and phone calls from all the areas of the U of M. My U of M doctor absolutely ROCKS!!! I have over the days of June 9 through 11 - a PET scan, an MRI-3 (new kind of MRI only U of M and Mayo have - should I feel special?), a CAT scan and a pelvic ultrasound. I'm tired already and I have not even left the house but I still feel a strong confidence with all this going on or perhaps the tranquilizers and antidepressants have kicked in. :-)

Then on the 15th I have a meeting with my radiologist/oncologist - a female which I think is awesome because I like female docs too! (I'm certain I will be getting the Dr. Nigro Radiology/Chemo cocktail which is fine with me from what I've read about it) and hopefully she will stage me and also tell me what the prognosis/treatment plan will be. So, that is what I have for now. I will come back in here after my meeting on the 15th. Pray that the news is positive, that the cancer has not spread or if it has, has not spread far.

According to my journal (yes, I keep journals, have done so since I was 16 although I do not write in there every day, just during traumatic times and I think this constitutes as such)...but I digress...according to my journal I have been trying to get 'diagnosed' since last August with this issue. But...because I had had the requisite colonoscopy, no one thought it was a bad thing. If your 'gut' is telling you one thing and your doctor is telling you another, be more aggressive than I was. Not everything or every symptom or diagnosis is 'by the book' and if you feel there is something wrong, push for a better diagnosis. I learned that the hard way. Now I'm taking charge of everything, have my big purple polka dot sachel filled with my notebook, notes, medical cards and printed out copies from medical journals to ask questions. I'm not one to sit back and let everything just happen but want to be actively involved...and that is exactly what I will be doing.

Don't think that I'm being this stoic strong person...I have my moments. I fall apart one minute, then I get pissed off the next and the next I'm just sitting here looking outside at the flowers thinking what the hell? But I appreciate your support and your love and your prayers. Thank you from the bottom of my heart. Marilyne

Sunday, June 6, 2010

The Journey Begins

On May 21st I had what I thought would be some simple surgery and minor repair work. The symptoms experienced over the last 8 months pointed to another prolapse or digestive issues. The doctor was not concerned because a colonoscopy was done 2 and 1/2 years before and while a benign polyp was found then, not other issues arose. I was initially sent to a colo-rectal surgeon who diagnosed and concurred with my family physican - if diet did not change symptoms, I was to have some minor surgery. Needless to say a few months and more visits, checkups and even a small scope showed nothing more than the minor issues. Surgery was scheduled and because I mentioned something about pressure, the surgeon looked a bit further in the surgery and found a suspicious mass. He had it biopsied and it came back positive for squamous cell cancer. While I always wanted to look like Farrah Faucett, I did not want to end up with the same dreaded disease she had...I honestly only wanted her blond hair!

Fast forward to having my family physican hook me up with two new surgeons who would further diagnose (the initial surgeon was a general surgeon not a specialist but he knew enough to remove and biopsy what he saw and then stop) and perhaps give me a plan of treatment. For now the road moved from minor surgery and recovery to minor surgery, cancer diagnosis and more roads ahead.

The first doctor I was to see (I was shopping around) was at the University of Minnesota. My family doctor thought it was too far for me to drive but since my brother and my only sibling (who has multiple myeloma ) attends U Penn a teaching hospital for his cancer, I thought it was best to keep everything in one place with a team of doctors but I was not about to make any major decisions on this. After all, the group will have my life in their hands.

The hospital was daunting, large as the U of M campus is huge -- ironically when I did my undergrad I went to Augsburg which lay side to side with part of the has a way of going around in circles I believe and this is one major I do not believe in coincidences...never have. I believe everything happens for a reason and while we do not understand at the time what that reason is, it becomes clearer and clearer if we open our hearts and minds to it. Nothing in my life has happened by coincidence. Not the friends I have made, not the move to Minnesota, not the jobs I have found, not the degrees I was able to attain, not the diagnosis that was given and not even the hospitals that were chosen for me to check out.

I find myself praying a lot...always did, all my life. While I do not sit and read the bible and pray nor do I go to church a lot, I do pray...sometimes it is just to say thanks for small things, like my sons coming home safe from school or a trip, my husband's health improving, to pray for a friend or family member who is ill or needs hope, to thank Him for the flowers that bloom every year in my garden (you would understand this one if you knew what a horrible gardener I am) and just for blessing me all my life. Now I find myself praying simply for guidance and help. Point me in the direction I need to go and I will follow.

When I walked into the U of M waiting room, the first person who greeted me was a sweet African American man with a crooked smile and dimple in his chin. He guided me carefully as to what I needed to fill out, what I had and to take a seat. He made me feel comfortable. Then the first nurse that came in (who I nicknamed McGuyver) - a young Asian girl with round face and exuded so much sensitivity found information I could not and added it to my chart (the colonoscopy info for example). Finally a young doctor came in (female) who had 7 years of surgeries already - she did not look more than 29 herself who asked questions and listened intently. When my actual surgeon and specialist walked in, he was my age, kind eyes and listening heart. He asked me some questions and then when I mentioned a few of my fears and some of the extra symptoms he sent Rich out so he could check me out. I got to watch what he was doing on the screen and he pointed out the healthy from unhealthy tissue. Then he showed me on the chart. The 'sample' the other surgeon removed (he thought he got 95% of it) was only the tip of the iceberg. My doctor Dr. D, felt there was more there and wanted to see every scan, record and slide there was before committing to a diagnosis. He thought it might be squamous cell but he felt something else was going on that was unusual. With every passing second being in there with him my confidence level rose. My anxiety level lowered. It 'felt' right to be there regardless of the end diagnosis. I did not ask God to give me a sign but He gave me a few anyway.

First, the doctor asked me about my accent and where I was from and I said originally from Jersey and he laughed and said well, I knew it. I went to school in Jersey and I thought he was going to tell me it was the University of Medicine and Dentistry in Newark but he went to Princeton! I felt like a proud Jewish mother at that point. Wow. Princeton. He has to be pretty smart...and then we talked about possible treatment depending on whether he concurred with the other pathologist (his team would be looking at my case first) but he said that more than likely I would be going through a few scans (CAT, PET, special MRI they only do there and blood tests) before treatment begins and the treatment would more than likely be a Radiation/Chemo mix.

Now I had done a lot of reading prior to this and one thing that kept coming up was the Dr. Nigro treatment/protocol that had become popular over the years to spare patients from colostomy bags and losing everthing else (but for me if I have my life I can deal with anything) -- this treatment used to be given to lab rats first before surgery was performed and it was found that the treatment alleviated the need for surgery because it got rid of the tumors and cancer totally. So I was curious about whether or not this was the treatment plan he would be looking at. Sure enough when he said rad/chemo mix per Dr. Nigro's protocol I jumped up and said I read about him, I'm so glad you are thinking of using his protocol. And he said, not only is he using his protocol but he KNEW the man, who just recently died (hopefully not from colon cancer I added and my doctor smiled and said no) but he also attended his seminars and worked with him for awhile. When I looked up at the ceiling at that point, God knew I was saying that small thank you again for watching over me. I left there feeling confident in my future care.

Now that is where I am at this point. I do not know the staging, I do not know if Dr. R will concur with the other doctors or pathologist, I do not know for sure what I have or if it has spread or what is going on. For now I am in limbo waiting for scheduled testing and possible diagnosis. I did purchase a Reiki healing tape and listen to it while I type these words in my blog. Whether anyone reads this or not is not important, what it important is I am able to express my fears, my hopes, my experiences. I think everyone going through this should have the opportunity to do so and if I can be here for someone else going through this, I will gladly be there.

So, I am signing off now until I hear further. Be well. Marilyne