AWOL

I apologize for not being better about keeping this up.  The holidays happened, and I have been in somewhat of a dilemma since then.  I was waiting to post when I had something substantial to share, but I'm tired of waiting to talk to you all.  So I titled this post AWOL because I have been Absent WithOut Leave from my blog and I also am AWOL from my oncologist as well.  I haven't been to the doctor since 11/15/2010.  I decided on that visit that I would be done with that cycle of chemotherapy.  I was doing pretty well and really wanted to go into the holidays chemo free.  You see, it takes me several weeks.. like 6 of them, to start feeling like myself again after having a cycle of chemo.  So, in order to feel good at Christmas, I needed to quit a little early.  I don't think my doctor completely supported my decision, but he is good about letting me decide my own destiny.  It was also scan time.  I believe I have shared with you all before how anxious I get over the scans.  I am not alone in this anxiety.  I guess it is quite common amongst us cancer patients.  My doctor is very considerate of my anxiety and gave me the option to get them done ASAP before Thanksgiving, or wait until after the New Year so it doesn't ruin my holidays.  Thanksgiving crept up so fast, I just figured I would wait until 2011.  Then January came.  I was feeling SO GOOD!  My stamina was up and I had really learned to make the best of my time.  You see I go through some pity pot feelings and had spent a lot of December wishing for the Christmas miracle cure.  But Santa did not put a cure in my stocking and yeah...  I was a little disappointed.  But in January, I picked myself up, got past my pity party and really started living again.  I would be asked "Did you call the doctor today?"  My reply was always - "gosh I was so busy, I forgot.  I will do it tomorrow."  Well...  the tomorrows soon turned into weeks, which soon turned into a couple months.  I got a nasty cold in late February and still am battling it a little.  But for the most part, still feeling pretty decent.  I hope that I have not hindered my ability to battle this disease by not seeing my doctor, but I think that just getting some time off has done my spirit well.  Another big reason why I have been avoiding the doctor is because I am not sure I want to continue chemotherapy.  No!  I am not giving up my fight!  I am just considering fighting my cancer in other ways.  As it stands right now, the chemo makes me more sick than the disease itself.  And I have done a little research that shows how barbaric chemo really is and soon it will be a thing of the past because it really isn't the best way to fight cancer.  Oh sure, it kills cancer cells...  but it kills ALL cells.  So as it weakens the cancer, it weakens the good stuff in your body too.  A friend referred me to a wonderful lady who is an RN and a  licensed nutritionist who will help people like me for free.  I have met with her once.  I could talk on and on and on about the things I learned from her, but not sure I can actually apply her ideas to my life.  So, here I sit.  Still not wanting to call the doctor because I feel like I have to make a decision when I see him.  The decision being whether I am ready to proceed with another cycle of chemo or not.  I'm just not ready to make that decision.  I think I am finally realizing that when it is decided that it is your time, its your time. There is no treatment or thing that you can do to prevent it...  It's just that you are needed elsewhere now to start over again. 

Yep...  I did it.  I opened that door to the subject of faith.  In the last (almost) 4 years I have learned so much about faith.  I have been a quiet observer of people who claim to have faith, people who practice faith, and people who don't have faith.  Yes, I know, I talk A LOT!  But I also listen and observe and I have learned a lot from watching you all and how you handle your issues.  (My retired lifestyle has afforded me this luxury... but I have always been interested in the subject).  I have reached a calm in my life with regards to faith.  I feel I finally understand it, and I no longer am bitter about my disease and situation.  Life can get so complicated and you can lose your focus and priorities so easily.  I am not saying that I will never lose focus or sense of my priorities again because it just happens, I am just finally ok with my situation and I need to make the best of every moment.  We all say that, but it is so hard to make it an everyday practice.  I could talk for hours on the subject...  but I will close out the subject of faith with this:  I sincerely love an appreciate all of you for your friendship and support.  I was talking to my Mom this afternoon and realized something amazing!  When my Mom calls to check up on me, my story is usually the same.  "Mom!  Guess who I heard from today?  They just (emailed) (called) (facebooked) me to check in and see how I was doing and if they could help me in anyway.  And Mom...  there is just not enough time in the day for me to see, email, write, talk to the people who I care about so much."  I know that may be difficult to read, but I hope you understand what I am trying to say.  What a wonderful feeling to have "not enough time in the day", to reach out to all those that love you and care, to be your biggest problem.  I sure hope that makes sense to you.  I mean it in the most sincerest of ways.  So please!  Keep emailing, writing, facebooking, calling, and stopping by.  I LOVE IT!

I would love and appreciate any feedback that you may have regarding my dilemma with my doctor.  I know I need to get in there soon to at least get my port flushed.  And I am going to make an effort to be better about keeping up this blog.

Love,
~LeAnne

Response

Hey everyone!  I haven't updated in awhile...  I guess I was worried that I would bug you all with my ramblings, but the response I have received has been wonderful!  I have read your comments and received emails and facebook posts and it all has been so encouraging and helpful.  I am so thankful for all of your thoughts, prayers, and involvement. 
I just finished cycle 6 of this latest go around with chemotherapy.  My doctor judges me on three factors...  First being clinical health-meaning how I feel overall.  Second is tumor marker, also known as a CEA number, and third is scans.  I will say that I am feeling pretty good.  Definitely doing better this time than last.  Yes, I am a bit sluggish, but I fight through it and try to keep moving.  The doctor feels that my clinical health is good.  Second, my tumor marker...  It is important to know that this is only used to show trends....  so it does not matter how high or how low the number, it is the direction in which the number is going.  Before I started treatment, my tumor marker was at 154, I am down to a 64!  This is very good news!  It did bump up 6 points last week, but again the overall trend is downward.  As for scans....  I hate them, and I guess I am not alone.  It seems that all cancer patients get a little edgy when it comes to scans.  I haven't had one since August or so, that means I am due for scans very soon.  They are very stressful, and when the technicians write up their results - they leave out the warm-fuzzy words and call it like they see it.  In my case it usually reads "numerous nodules in both lungs" "too many nodules to count but all very small in diameter" growth is usually just a fraction of an inch.  I am hoping for the same results... or maybe even a reduction in size when I have my scan in early December, but we will just see what it says.  I will post again then to let you all know.  So I have 2 out of 3 going my way as far as the 3 factors go. 
Some more good news...  after finishing cycle 6, I only have maybe a few more cycles to go before I'm up for my "chemo-holiday".  I will probably have cycle 7 for sure and then call it quits for awhile to let my body repair.  It will be nice to have some stamina during the holidays!  I still go thru some downer days at times, but your correspondence helps so much!  If I manage to get to my computer, there is usually a message or two that reminds me things aren't so bad and helps me get to smiling again.  I still really miss my job, but I have to say that I am settling into my "retirement" lifestyle quite comfortably.  More home-cooked meals, movies, visitors, and games.  The days are a little quiet with the kids at school.  Thank heavens Derek has early dismissal so it's not so bad. 
Last thing I feel I should mention...  my hair is finally giving up.  It is still there but very thin and I have some bald spots starting to poke thru.  Ugh!  It's a small side effect but I do miss my long hair.  Not sure what I'm going to do about it yet, hats for now I guess.  I'll just take it one day at a time. 
Thanks again everyone for being so kind.  Hugs & Kisses to all!  I will post again in a couple of weeks.
~LeAnne

History

So, to get everyone up to speed...  I was diagnosed with colorectal cancer on 5/25/07.  I was 37 when I was diagnosed.  It was first thought to be a stage 1 or stage 2 cancer (meaning 60% to 80% survivable).  But, after some additional tests, they found nodules (spots) in my lungs as well.  This means that the disease had metastisized and it now meant that I had stage 4 cancer (stage 4 means 0% chance of survival).  I had my first surgery on my birthday 8/24/07 to get rid of the tumor in the colon and the surgery was a success!  I no longer have any cancer in that part of my body, but it's the nodules in my lungs (the doctor's call them nodules) that still remain.  They are very small, and they are in both lungs.  There is also so many that they can't count them - so they are inoperable.  I was told that someone in my condition generally has 2 1/2 to 3 years to live...  but I was NOT told that time frame pertained to me - that it was only statistical and that my young age would work in my favor.  I have been receiving chemotherapy for 3 1/2 years now.  I have it everyother week for approx 5 months and then I generally get approx 3 months off to let my body recuperate.  For the first 2 to 2 1/2 years I would bounce back fairly quickly from the side effects of the chemotherapy, but lately it has been getting more difficult for me to get right back into a normal routine after receiving treatment for months on end.  My body is just taking a beating.  The doctors say that my bone marrow is saturated with the chemotherapy drugs and that is the reason why I am slower to recover than I used to be.
I had to take a year off after my first surgery... (it wasn't supposed to be a year - but some complications and an additional surgery in January of 2008 made it that long).  Went back to work in August of 2008 and worked until December of 2009, but I have been on disability leave since then.  I have recently been blessed with Social Security disability benefits and don't believe I will be returning back to work unless by some miracle, my disease vanishes as mysteriously as it appeared.  Yes, my disease is a bit of a mystery to the doctors.  When I started getting ill and got in to the doctor, I was concerned that I had colon cancer due to the symptoms I had been having...  I was told by a Gastro-Interologist that there was a "less than 1% chance" that I had colon cancer due to my not having any family history of the disease...  But here I sit today suffering from it.  It is unknown whether I had the spots in my lungs first, or the tumor in the colon came first, but at this point, it doesn't really matter...  we don't look back, we enjoy the day at hand and make the best of it.  Oh yeah, I could go on & on about all kinds of little things that happened in the last 3 1/2 years due to this disease, but this is the main story and I am trying to keep it simple.
As for where I am today... as I stated earlier, I had to give up on my hope of returning back to work.  I LOVED MY JOB and the people I worked with.  Everyone from my co-workers, to vendors, to customers.  It was so hard for me to think about giving up 20 years of my hard work at my employer.  They have been absolutely wonderful to me.  Everything from cleaning my house, to cooking me & my family dinners, driving my children to their activities, participating in activities...  EVEN YARD WORK.  Free room air conditioners to help me with hot flashes, and being there at all hours of the day and night for moral support.  I cannot thank all of them enough for all the wonderful things they have done for me and my family.  My family has also been fantastic!  Supporting me every step of the way and being patient with some of the "speed bumps" we have encountered along the way.  That is one thing I will say about the disease...  it has given me such a different view of life.  I have truly learned to appreciate every moment of everyday and I am very thankful that I have received this view.  So I decided in order to get my "business" fix (from missing my job) I would start running my household like a business.  I know it's weird, but it helps my mental state A TON!  This has really helped me get over my despression about work.  Oh yeah, and for all you facebookers...  Farmville has been therapy for me.  So don't pick on my farming.  I work for a little bit around the house, then I need a rest, so I facebook and farm.  I love it!  Truly theraputic for me.  This week I argued with all kinds of medical billing offices about all kinds of erroneous bills, cleaned out my pantry and a couple of kitchen cupboards.  Made a complete run to the grocery store (which is hard for me to do at once due to low stamina) and made home made dinners all week.  With some help of Derek & his friend Riley.  Paul made some French Toast one night and Elle usually helps with the dishes.  But, all that will change for next week.  I have treatment (chemotherapy) tomorrow so I will be down & in bed for several days this week.  Sometimes treatments go smoothly and I can get up & running right off the bat, other times I can be down for almost the entire 2 weeks.  I am hoping for a smooth run this week.  (I haven't had a smooth treatment yet since I started this latest session - so I'm due for an easy one).  This will be my 3rd treatment in this session.  The doctors would prefer me to have 10 to 12 treatments before they give me a "chemo-holiday".  I don't believe I have made 12 treatments in a session yet.  I think the highest I have had is 10.  Now that I have this blog up to date, I am going to email all y'all with the address and you can keep up with me.  Definitely more to follow.  I have so much more I want to share.

LeAnne's new blog

So I think you all can figure out why I started this.  It is SO HARD to keep everyone updated on my latest news... so it was Derek's idea to start this up.  I wasn't convinced at first... but after talking to DeeDee, I think it's the best way.  So...  hello everybody.  I will post more in the next day or so.  ~hugs