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

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

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 demise...my only comment to this?   DIE HARVEY DIE!!!!

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

7/15/10

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!)"

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

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 mail...lol.  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 forward...you 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

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 on...it'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

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

July 2nd 2010

Fourth of July Weekend...am 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