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

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 done...how 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 this...as 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

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

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

This is what I figure Harvey pretty much looks like now, or will after the next three rads...my 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 happens...be well everyone, Marilyne

8/12/2010

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

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.

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

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