Monday, December 26, 2011

Merry Christmas and Happy New Year

Been a few months since I posted in here so I thought I would write an update over the holidays.  Scans have thus far been coming back clean which is a blessing in itself.  I am now 16 months post treatment which is still in the 'so so' zone...I guess up to 18 months is a critical period and then two years is another anniversary milestone and three is another.  So I still have a way to go but as it stands all seems to be okay on the physical front. 

I keep forgetting that I am 64 years old and I expect myself to be jumping around and full of energy getting things done but I can no longer do that.  I tired easily.  That frustrates me as I my mind wants to do things but my body is saying heck no, no way!   Oh well.

I did recently find out I am going to be a grandmother - my oldest son and his wife are expecting and due in mid May of next year.  Very exciting news.  I'm thrilled to be here as part of all the updates and seeing things develop.  The best is watching how my son is reacting to all of this.  It is very touching.

That is about it for now.   I have an ultrasound next month which should be uneventful and my next round of scans and such will be in March.  To all who still read this, Happy holidays...I wish you nothing but love, peace, happiness and joy this holiday season and for the new year.   Love, Marilyne

Wednesday, September 14, 2011

One Year

A few days ago I had what amounts to my one year checkup.  They did an ultrasound only on the area where the gall bladder was to check on an air bubble they thought was there and also viewed my right kidney at the same time.  Bloodwork was great.  All levels are back up.  Kidney not doing as well though and the oncologist thinks it might be from radiation damage.  I'm to see a nephrologist (sp?) kidney doctor and when they did further tests she felt it might be a kidney infection so gave me antibiodics and told me to see a urologist too.  They obviously cover all bases. 

I do not have to have a scan in December which both elates me and makes me a bit nervous.  Should one be done to scan my whole body in case spawn of harvey shows up somewhere else?  I guess it was my safety net and not having that makes me a bit nervous.  At the same time it makes me feel more normal.  I even renewed my quilt mag subscription for three years.  Keeping that positive attitude. 

Just thought I would update everyone still reading this and to add to my 'diary' of sorts.  Hope that this finds everyone well.  Be well, Marilyne

Thursday, August 11, 2011

Internal Ultrasound

As everything else with this disease...there are constant reminders that it was there and can come back in the early years after diagnosis and treatment.  Yesterday I had my ultrasound which I found I should have been having every 3-4 months or so and missed by 9 months.  Woops.  Lots has gone on, my surgeon dislocated his elbow and was out of commission which pushed some appointments around and farther in the further, leaving open some unanswered questions and followups.  All is back on track now. 

The ultrasound was uneventful (albeit painful) but to see the screen and see absolutely nothing was just a blessing.  I was elated.  The doctor that does this is wonderful...he actually says, this is what I see, this is what will happen or as in yesterdays is empty, I see nothing.  Yeah!!   Then my husband surprised me by taking me to my favorite wholesale fabric place that was only a few miles away and I actually bought some me this was a perfect day.  Okay, maybe some ribs from Famous Dave's would have topped that off.  lol.   Thank you for reading this, for listening, for praying, for being with me during my ups and downs.  So appreciated.  Be well everyone, Love, Marilyne

Monday, July 18, 2011

Continuing on the Journey

Hello everyone.  Had my follow up colorectal surgury visit and that went well.  They are so aggressive about following the aftermath of this cancer.  I am thankful for that but so tired of doctor visits and the splunking and prodding.  Next is an ultrasound in the next few weeks as part of the one year follow up practice.  Then I get a reprieve (hopefully) for a few months and in September more scans, tests and prodding.  Next month on the 18th marks one year since treatment ended.  One year went by awfully fast although it seemed to go very slowly during treatment.  My celebratory anniversary however is Dec 18th.  That was when the biopsy confirmed no cancer was there.  And so the journey moves on and I keep my seat belt on in case it gets bumpy but so far it has been a very pleasant ride.  Thank you all for praying and being there for me and Thank you God for the healing grace you bestowed upon me.  Be well, Marilyne

Sunday, July 3, 2011

Thankfulness and Guilt

Hello Everyone - I was reading in my cancer sites (two sites I frequently go into where I can commiserate and vent to a cohort group that is going and has gone through what I have) and reading some of the trials that others are going through made me feel both thankful I was not going through what they are and guilty to feel thankful at the same time.  I'm not entirely sure I know what that means.  Why should I feel guilty I do not have the same trials? I'm not sure why.  Perhaps because it brings this disease and possible outcomes to reality and I fear that - perhaps the guilt is only a manifestation of the fear. 

I know I peruse the forum threads and when someone who has been in remission or has had clean scans over a few years suddenly develops another cancer or a metastases somewhere else, I actually panic.  When does this fear of recurrence end?  Perhaps it never does.  Perhaps the key is to learn to 'live' with the possibility of recurrence or metastases or even a new cancer.  While I know that sounds maybe a bit defeatist in the sense I'm not thinking "I'm Cured!!!" lets move on - it is something I think I will live with for a while longer and perhaps for the rest of my life.  Once you have been hit with the cancer lightening bolt, you tend to be afraid to go outside for fear you will get hit again.  Normal fear.  It's when the fear becomes irrational that I will need to check myself at the door and re-evaluate my thinking.  So far my fear is normal. I intend to keep it that way.  I intend to do everything I can to be healthy.  What happens after that, happens.

Today is the day before the fourth of July.  This year went by so quickly.  Next month on the 18th will be my one year anniversary since treatment.  One year.  All the burns and itching and pain and illness of treatment are a faded memory now (although when I read of others going through it, the memory creeps back quickly).  I will be lighting a sparkler tomorrow -- I do that every year -- to commemorate this holiday.  Even last year, I went on the deck in my extra large boxer shorts (worn to keep fabric away from the burns and sore skin from radiation) and lit a sparkler and watched as neighbors set off their own fireworks. 

Happy Fourth Everyone.  I'm thrilled that I'm here to celebrate another one.  Hugs and Love, Be well, Marilyne

Thursday, June 30, 2011

Never a dull moment

Just when I think that I have a few days of respite, the roller coaster in my life shows me that I have no control -- or perhaps God is telling me that control with this disease is not going to work.  These little 'blips' on the radar tend to play havoc with my mind and body and while I hate it, it keeps things in perspective.

Had my requisite mammogram last week, like the diligent woman I am.  They called me back the next day to schedule an appointment because they saw a 'thickening' that wasn't there the year before. I just thought, okay, here we go again.  Buckle the seat belt.  Say another prayer.  Take a deep breath.  Say to self, "self, you cannot change the outcome of this - it is what it is - do not waste days withdrawing and trying to gather strength for something that may not even happen.  Enjoy your days anyway."  Of course I didn't listen to myself. 

Five days later I had the mammo redo (which is much worse than the regular mammo unfortunately because they have to focus on specific areas.  I had an odd calcium deposit right below this thickening which almost looked like an upside V pointing quite nicely to the mass they wanted to view.  That helped the radiologist focus in the right spot.  I was then told to sit outside with my little bag of clothing (in case there was an issue, I would have to go for an ultrasound).  Another woman was out there with her little bag and in a hospital gown like me.  Then another came out, same bag, same hospital gown but a robe.  Modesty prevails in any situation.  The technician came out to say the radiologist/surgeon was doing a biopsy but would read the mammos shortly, maybe 15 minutes.  A few minutes later she came out and called me in.  I kept thinking, hmmm, the person before me wasn't called and the person after me wasn't called.  My heart started pounding and my mind rationalized all types of things and I wondered if the cancer decided to attack me in another area.  I hate this disease.  I hate being so paranoid.  I hate the fact I worry about every pain and ache now when I didn't give it a second thought before.  I hate that I lose days of my life in worry.  I hate that I have no control. 

She takes me in the room and shuts the door for privacy she says and I sit down as my legs are wobbly.  She tells me everything is fine, not to worry.  It was simply thickening and no suspicious mass.  Come back in a year.  Relief washed over me.  She started to apologize for making me go through it all and I said no, I am glad that they are diligent and do this.  Best to catch this early and be sure.  As I started to leave I realized the other two women in the lobby may have different news and I walked out quickly. Not smiling, not making contact.  Whether that was the right thing to do or not, I do not know, but I felt if I was happy and smiled I did not know what news they would get and did not want the moment that is quite frightening to be the bouncing off board for my good news.  I said a prayer for the two of them and met Rich outside.  I was able to breathe again.  Able to plan again.  At least until my visit to the colo-rectal surgeon on July 15th.  Another respite.  Thank you God. 

Be well, Marilyne

Tuesday, June 14, 2011

Update on 9 month scan

Had my blood work and scan done on June 7th.  The oncologist's nurse called and told me the blood work looked good except my white count was down from last month and they want to watch that.  It was possible the chemo did some damage to the bone marrow.  Since I just had gall bladder surgery I am wondering if it is because my body is trying to heal.  At least I hope that is the case.  Even so, I found myself hearing those words reverberating in my mind again...'what if....what if...."  

Living as a cancer survivor is still as difficult a journey as it was as a cancer patient.  There are various levels of survivor I believe.  The fighter who survives to live and beat the cancer, the survivor who finds that the scans are clear and survives to keep the faith from scan to scan and the survivor who is in limbo, worrying about aches and pains and odd blood work and scans where it would not have phased her before. 

There is always that fear the cancer will return either in its original place or somewhere else. And that is how I live.  When the scans are clear I relax a bit until the next round of scans.  I do not know when that will end if it ever will as these doctor visits and scans and blood work are part of my new normal. 

June 13 I saw my oncologist and the scan was clear...except for an air bubble or something that they saw on the CT in my common bile duct where the gall bladder was removed.  Sometimes this occurs after gall bladder surgery.  My oncologist wants me to have an ultrasound in this area in 3 months, not another CT as she does not want to subject me to more radiation.  Another CT will happen in 6 months.  The CT will focus more clearly and precisely on this 'air bubble.'   The low white count she believed is due to healing from the gall bladder surgery.  However, if I have pain in the GB area, I am to contact her immediately.  So...what does all this mean?  I have no idea.  She did not seem to be concerned and I base my emotions on how she reacts to things as she would not hesitate to send me for an ultrasound immediately if she was worried so...I am not worried.  I trust my team and their judgement.  I trust God to give me what He feels I can handle. a human, I still feel vulnerable and afraid sometimes. 

So, another reprieve.  Next scan will be in September.  I finished logging in all my appointments for the next few months on the calendar and will utilize the ones without mammograms or scans or doctor visits with fun stuff and creating.  Thanks for being there, for your prayers and thoughts.  It means so much to me.  Be well, Love, Marilyne

Sunday, May 29, 2011

9 Month Scan

Coming up to the 9 month scan on June 7th.  I can't say that I'm not anxious or worried.  While deep inside I do not feel that there is any recurrence, there is always that small doubt inside that stays in the background gently whispering...what if...what if...and it is that small voice that tends to make me withdraw and recoil at doing anything.  I become emotionally paralyzed until I see the oncologist and she says everything is okay, then I live again until the next scan.  This usually occurs a couple weeks before the scan and I am assuming might be a normal reaction.  At least I hope so. 

About a month ago I started to have unusual pain and nausea and went to see my regular GP.  He thought it might be gall bladder.  Had some other symptoms that could have leaned towards liver issues which really scared me (this type of cancer travels to lungs or liver if there are mets).  Had an ultrasound that showed no gall bladder stones and asked for another scan to show the function of gall bladder and liver.  Sure enough the gall bladder was only functioning at 18% and within a week had surgery to have it removed.  Ironically I felt relieved when they said the liver looked okay (functioning) and it was 'only' my gall bladder.  That was two weeks ago I had the surgery and am starting to feel better physically, albeit not quite yet mentally or emotionally. 

Not too many people understand the emotional roller coaster that occurs when diagnosed with cancer.  Even those who are in remission still walk around with a small cloud over their shoulder.  It takes many years of being in remission before one actually feels a bit 'safe' I guess the word can be that maybe it won't come back but in the early remission years it is a difficult road to put this out of one's mind.  That being said, I am glad I have this forum and blog to write my emotions down.  In a way it is the best therapy I could have.  Will come back in here after my scan and results.  Be well, Marilyne

Sunday, May 8, 2011


I've had some time to reflect lately, more so than normal.  In a few short weeks it will be the one year anniversary that I had my original surgery...the surgery where harvey was found.  A few weeks ago I was having some issues with my stomach, mostly some pain and indigestion that I kept attributing to eating a coconut cream pie (yes, I was a glutton but it was home made and it was good!).  I started having other issues and called my colo-rectal surgeon (who a few months ago fell on the ice and dislocated his elbow so will be out of commission for a few more months - some angst there as I trust him and hope nothing goes wrong while he is gone). 

The surgery center's nurse called me back and we discussed the issues.  She suggested it sounded more like the liver or gall bladder acting up.  Do not want to hear liver as mets from my type of cancer go to lung and liver.  after she consults with another RN they tell me to call my regular MD.  I'm starting to feel a bit of deja vu my anxiety goes up.  My Dr. checks me out and says the liver enzymes are fine when I tell him my concerns and sends me for an ultrasound.  That turns out fine - no stones - no liver issues - I'm still anxious because everything was 'fine' the last time too.  He asks if I want to go for one more scan that watches the function of the liver and gall bladder and I say yes.  I'm not about to be not aggressive about this.  We do that last Friday and I'm done by noon.  By 6 PM he calls me on the phone and says my gall bladder is only functioning at 16% and needs to come out.  So I am not in the process of trying to schedule a pre-op with my regular MD and a surgury with the same guy who did the original one a year ago.  See what I mean?  Deja vu.  I'm hoping the results of this surgery are markedly different from last year.  I want to enjoy this summer. 

I guess I simply came in here to express what I'm feeling right now, whether anyone reads it or not, because it is a nice catharsis to be able to say what is on your mind without worrying someone else or having someone else carry the burden or worse yet having someone else just not understand the issue.  There is so much more than having a 'simple' gall bladder surgery now because of the scars left from the cancer diagnosis and treatment...I found out the hard way nothing is always that simple.  So I come in here and vent and release whatever it is that is bothering me or being thankful for ... it does make a difference and help. 

So for anyone still reading this, thank you -- and hope that this blog note finds you all well.  Love, Marilyne

Tuesday, April 5, 2011

Back on the rollercoaster ride...perhaps a short one...

Hello everyone.  Been awhile but things have been pretty balanced lately.  Scans have been good - my next one is in June.  Had to visit with a GYN Oncologist as I need to be monitored in all areas and a biopsy they did came out fine but there are some atypical squamous cells there - not cancer but can turn into cancer.  I need to go back next weds to have them do a special scope that is like a microscope for them to look closer at the area. Always something.  I'm not as freaked out as I thought I would be. Maybe because I trust my team and well, it is what it is.  I'm hopeful that it won't lead to much more but am thankful that they are on top of it.  Will keep you posted.  Hugs and Be Well, Marilyne

Friday, February 18, 2011

6 month scan

Had appt with my oncologist today and the 6 month scan came out well.  Still have to see the colo-rectal surgeon for a scoping as he looks close but nothing lit up on the scan.  The oncologist is usually more bubbly and upbeat than the surgeon so we shall see.  I will finish this post after I see the colo-rectal surgeon but it seems to be going very well.

Surgeon's appointment on Thursday was good.  They poked, prodded and splunked their way through Harvey's old house and found nothing suspicious.  Relief abounded.  They still cautiously advised me that they will watch me closely which I am thankful they are.  I do not have to go back for four months which is awesome.  Four months of relatively free thinking and freedom from worry of cancer.  How good is that?

Thank you everyone for being there and for your prayers, caring and concern.  Be well, Marilyne

Monday, February 7, 2011

February 7, 2011

Hello Everyone - I came in here today for two reasons.  One was to let you know that my six month scan is tomorrow.  Follow up exams will occur next week.  I have not been as anxious about this scan for some reason and did not think it necessary to come in here until after the scan and results were in.  The second reason was to mention that I lost a very close and dear friend yesterday.  I considered her as close to me as a daughter.  She died in her sleep at the age of 41.  Too young.  We do not know the cause just yet, speculation was it was her heart.  The reason I bring this sad information forth in my blog is to reiterate once again how tenuous life is, how we need to hold on to our days and enjoy them to the fullest.  To let small unimportant things that might annoy us slide off our backs, to forgive those we may be carrying grudges against, to say I love you to the people closest to you that you might not think to say it to on a daily basis.  Most of all, to appreciate one another for in the scheme of things, today may be all we have.  That's all I have to say on the matter.  It was my way of coming in here and grieving for my friend and daughter.  She will be sorely missed by me and all others who loved and knew her.  Thanks for letting me open up about this in here. 

Friday, January 7, 2011

Post Op Update

Had my post op appointment from the biopsy yesterday.  Surgeon said he was very concerned until the biopsy came back and he was relieved it was not malignant.  A small nodule still remains and he said he is going to watch that carefully and be very aggressive about it (which I concurred with him).  So...I have to see him again in six weeks for a scope and DRE and we shall see what we shall see.  It is all around the same time as the 6 month scan and visit with my oncologist. 

I've come to realize that my life for awhile will be lived in three month increments.  And might be so for awhile.  This is simply makes me feel comfortable in knowing my team is still watching over me.  I'm not going to say I won't be nervous or anxious or scared with each scan - I will be - that is the nature of the beast to worry.  But if the scans and DRE's come back good, I will relish that fact and enjoy my life until the next scan.  If the scan shows something and we need to investigate I will handle that as well and as best that I can.   While Harvey appears to be dead and only a small piece of his dead carcass remains, we will still have to be diligent and keep tabs on the area.  I feel pretty good right now considering - oh I could complain about some things - residual chemo and rad treatment issues - but I am far too thankful to care about that.  Really.  I thank God every day for His blessings and that is how I will live my life from now on.  I thanked God before but not every day.  Now it is for simple things and blessings that I did not really 'see' until all this happened. 

Thank you everyone for always being there.  Loved all your Christmas cards.  Be well always, Marilyne