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

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

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

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 things...at 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

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

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

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