You know you're a cancer patient when........

You know you’re a cancer patient when……you stand naked in front of a long mirror and embrace your wrinkles...scars...[lack of boobs and hair]….and body changes....because you are just soooo grateful to be alive.

Courage is never to let your actions be influenced by your fears.  ~Arthur Koestler

Somebody in one of my online support groups shared a link the other day to “You know you’re a cancer patient when…..”   It’s kind of a takeoff on the “You know you’re a redneck when…..”  Anyway, I can really relate to many (most?) of the things written there (92 pages of quotes!), so I’ve decided to start incorporating them into my blog, along with the daily “inspirational” quote.  The cancer patient ones might only have meaning to me….and/or perhaps people who have been on this journey….I dunno…..but I’m going to try it out.

Right now I’m sitting in the “chemo suite” getting drip #4.  Smooth sailing so far.  I’ll be a third of the way through this regimen after today – a light at the end of the tunnel?? 

I’m a little tired today but feeling good otherwise.  I didn’t sleep well last night because I decided to read my book for about an hour before going to sleep – nothing unusual about that.  It’s just that the main character was just diagnosed with breast cancer and is now dying from metastasis to the brain.  Couldn’t it have been lung cancer or any other kind of cancer?  Needless to say, it wasn’t the sweet bedtime story I needed to be reading right before lights out.  I originally bought the book because I thought it would be easy, lighthearted, mindless reading.  Had I known that’s what awaited me at the end, I definitely wouldn’t have bought the book.  At any rate, instead of counting sheep last night, my mantra was “This is a book of fiction.  This is not a true story.  This will not be my story.  This is a book of fiction.  This is not a true story.  This will NOT be my story…..”  I just kept repeating it over and over again until I eventually fell asleep, although it wasn’t a very restful night.  I finally got up at 4:00 a.m. to get some of my transcription done.  One good thing is that I seem to have some “disease” or “syndrome” that doesn’t allow me to remember a book or a movie 3 days after I’ve read or seen it!  So this book (I think) will be gone from the memory bank 3 days after I finish it…..if I even dare to finish it.  Oh, I have to finish it.  I just won’t read it right before bed.

I managed to get my “workout” in this morning – after the transcription and before the chemo appointment.  Did a 30-minute walk, followed by a bike ride, followed by 50 laps in the pool – 40 swimming and 10 walking.  Wanted to do the stairstepper, too, but ran out of time.

Kenny made it back from Jacksonville this morning – the dogs and I were very happy to see him.  He’s pretty exhausted from working on the boat and trailer in the wicked heat and humidity, but it sounds like he’s making progress.  Hope to bring the boat down the intracoastal waterway to Merritt Island next week.  Still working out the details on everything.      

It seems to me there were some other things I had planned to write about today, but I’ll be darned if I can remember what they were.  I guess I’ll just have to save them for the next post.  As always, I LOVE all your blog comments and emails and phone calls and cards and gifts and love and support and positive thoughts.  Thanks for keeping me in your thoughts!  HUGS to everybody!

Closing the gap -- 3 down, 9 to go.......

If we are facing in the right direction, all we have to do is keep on walking.  ~Buddhist Saying

Fortunately, this weekend is much better than last weekend.  No real side effects from the Taxotere this time, other than some mild nausea and a fair amount of fatigue.  I met with Dr. Sprawls’ nurse practitioner, Katie, on Wednesday and told her about the terrible time I had last weekend with excruciating abdominal pain.  She was quite concerned about it and offered to give me a prescription for Bentyl, an antispasmodic.  I’m not really too excited to add any more drugs to my repertoire; however, there was no way I wanted to go through another weekend like last weekend, so I begrudgingly filled the script.  Katie also said she would talk to Dr. Sprawls about the pain I experienced.  After my appointment with Katie, I went upstairs to the poison center/chemo suite – all the nurses there are really nice.  Katie came up and talked to me while I was getting “the drip,” and she said she had talked to Dr. Sprawls who was also concerned about the abdominal pain.  In fact, he wanted to delay the chemo, but they finally concluded that since I was feeling good that day and my white count was up (4.78), we should keep going.  Yay!!  Let’s get this over with!

Here it is Saturday evening, and I’ve been feeling pretty good since the last chemo infusion.  I started taking the Bentyl yesterday morning and will take it through the weekend.  I had some very mild abdominal pain last night – tolerable – and some nausea and fatigue today – also tolerable.  So who knows if the Bentyl kept the pain away this weekend or if last weekend was just a fluky thing?!  I’ve also been trying some things that Bill recommended, too – Flor-Essence tea, aloe juice, peppermint oil in water – and I’m sure those things are helping to calm my stomach.

Maybe now I can get some of those things done on my “to do” list…..except I can’t find my list!  Guess I’ll have to re-create it.  Not a problem.  Now I have even more things to add to it.  Kenny is back up in Jacksonville working on the boat, so I’ll be without a car until Tuesday afternoon.  Our good friends, Debbie and Bill, even offered to let me use one of their cars, which is really nice, but I think I’ll be fine without a car.  I stocked up on groceries this morning, so it shouldn’t be a problem.    

I also have some very delicious homemade soup and stew that our good friends, Sandy and Don, and Sandy’s Mom, Janice, made for us.  Janice made a huge pot of delicious homemade chicken soup, and Sandy and Don made a huge pot of delicious chicken and spinach stew.  Don dropped them off at the RV when I was at the chemo center on Wednesday.  So thoughtful!  And what a nice treat not having to worry about what to make for dinner.  Kenny and I enjoyed them for 3 nights, and I still have enough to last me through the weekend.  Thank you, Janice, Sandy, and Don! 

I guess I don’t really have too much other news, so I will sign off for now.  Time to take the dogs out for a walk and then time for me to call it a day.

Best laid plans go awry......

The journey of a thousand miles must begin with a single step.  – Lao Tzu, Ancient Chinese Philosopher

Well, Dr. Sprawls assured me that Taxotere would be much milder and easier to handle than the Adriamycin/Cytoxan regimen I had finally completed.  So I assumed the Taxotere would be a “piece of cake,” a “walk in the park.”  Boy, was I wrong!  I was feeling fine on Wednesday, Thursday, and most of Friday.  In fact, we went to the beach Friday afternoon for a few hours and had a really nice, relaxing time.  But by Friday evening – shortly after dinner – I was doubled over in excruciating abdominal pain.  It made for a rough night of sleep Friday night because I couldn’t find any position that was comfortable, and moving/changing positions aggravated the pain even more.  I couldn’t walk straight up; my upper torso was bent at about a 45-degree angle, and every step was extremely painful. 

Saturday was more of the same, so Kenny decided not to go to Jacksonville because he didn’t want to leave me feeling like that, here by myself without a car, etc. etc., which I really appreciated it.  I called the oncologist’s office, and the doctor on call called me back.  I told him what was going on.  He said abdominal pain was not uncommon with Taxotere, but I needed to go the emergency room if I had a fever of 100.5 or greater or if the pain got worse.  Fortunately, I had no fever, and the pain stayed about the same.  I really didn’t want to go hang out in a germ-infested emergency room with my compromised immune system and low white count.  So I just spent a good part of Saturday in bed, although I had to do a few hours of transcription so I forced myself to get up and do that.  I just didn’t want to leave it all until Sunday or it would have made for a brutal Sunday.

By Sunday I was feeling a bit better.  The abdominal pain, nausea, and weakness still persisted, but I was able to spend most of the day out of bed.  I even insisted that Kenny go to Jacksonville to work on the boat.  He insisted that I take the dogs out for a walk before he left so that he could see I had the strength to do that while he was gone.  I did fine, and he left for Jacksonville around noon.  So the plans were merely delayed for about 28 hours (he had originally planned to leave first thing Saturday morning). 

Today I’m doing even better than yesterday but still not back to normal.  Still have some abdominal pain and nausea.  Still feel a little weak.  And nothing tastes good, including water.  If I continue to improve a little bit each day, I should be feeling almost back to “normal” (whatever normal is these days……) just in time for the next batch of poison to be administered.  Oh boy!  Can hardly wait!  I’m just hoping this was a fluke thing and that this isn’t going to be status quo for the next 10 weeks.  I will definitely be discussing it all with the oncologist on Wednesday.

And I guess that wraps things up for now.  It’s time for jammies and a book, take the dogs out for one last walk, and then bed…..and hopefully a good night’s sleep. 

2 down, 10 to go.....

Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it.  Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before.  ~Jacob A. Riis

Blog – an online personal journal containing reflections, experiences, opinions, observations, etc. about what is happening in a person’s life. 

I’m starting my blog off today with the definition of a blog because there’s something that I’m going to write about that wasn’t easy for me to hear, isn’t easy for me to write down, and probably won’t be easy for you to read.  You just have to keep in mind that this is my personal journal about what is happening in my life.  I’m telling it like it is, and I try not to do any sugarcoating.  There are days when I’m feeling really down in the dumps (not too often, fortunately), and I may not write at all on those days and just wait until I’m feeling a little more positive.  Other days I just feel like writing everything that’s on my mind at the moment.  Today is one of those days…..

Yesterday I had my weekly visit with Dr. Sprawls followed by Taxotere chemo #2.  I only had to wait about 10-15 minutes to see Dr. Sprawls, which was a record for sure.  That made me very happy.  The visit itself made me very sad.  On Tuesday, I had spoken with Mary (one of the nurse practitioners in the GI office I transcribe for).  She called mainly to tell me that she was finally direct depositing my paycheck (which she forgot to do at the end of June and then went on vacation!) and to discuss a few other business matters.  But she was also asking me how I was doing, where I was in my treatment, what’s planned for the future, etc.  So I filled her in on everything and told her that after this regimen of chemo, I would have a one-month “break” and then would be starting a 6-week regimen of radiation.  She asked why I needed the radiation if I had a bilateral mastectomy and pointed out some of the lifelong side effects of radiation, which I was aware of.  Anyway, she said she would have her husband (the doctor I transcribe for) ask an oncologist friend for his opinion on it – kind of a second opinion – which I was appreciative of.  And I also thought that I would have Dr. Sprawls refresh my memory as to why I needed the radiation.  I know he told me way back when, but he told me a LOT of stuff “way back when,” and I can’t remember everything. 

SO, I did just that.  I asked him to refresh my memory yesterday.  Why do I need radiation if I had a bilateral mastectomy?  He said to me, “You’re a high risk patient.  Of all our patients, you are in the category of most likely to die from breast cancer.”  Why, thank you so much, Dr. Sprawls.  Got any other cheery news up your sleeve??   And he said, “And THAT is why we want to do EVERYTHING possible to kill every possible cancer cell in your body and keep it from coming back.  Everything we are doing increases your odds a little bit.  The radiation will increase your odds by another 5%.”  5%??  Holy crap!!  That’s not much for all the body abuse, permanent damage, excessive financial expense, etc. etc.  He explained that we’re doing 4 things – surgery, chemotherapy, radiation therapy, and hormone therapy – and each item will improve my odds by a certain percentage – I think he might have even told me the percentage for each item, but I was in a fog by that point due to his sucker-punching, earth-shattering, life-altering statement earlier, and things were starting to go in one ear and out the other.  He said that even though 5% isn’t much, it’s something.  5% is better than 0.  And combined with all the other things, it’s a step in the right direction.  He also reiterated that a 5^th thing – exercise – will also improve my odds.  (So Kenny is on his way to storage as I write this to get the stairstepper back out, and I did my 30-minute walk and 40 – not 30 – laps in the pool today). 

At any rate, I was quite upset after yesterday’s visit and for most of the evening last night.  I had a very hard time getting to sleep, despite taking a sleeping pill.  But I’m feeling a little better today.  Although Dr. Sprawls was rather (no ‘rather’ about it) blunt yesterday, I’m going to try to take what he said and make me even more bound and determined to beat this wicked disease.  Yes, I still question whether I chose the right treatment path, but I’m “sucked in” now, so I’m going to stick with it and try to keep the positive attitude and just stay focused on fighting this ferocious battle.  My story WILL have a happy ending!! 

The other bit of bad news I got yesterday was that my white count was low again – 2.07.  It was high enough to proceed with the chemo, but now I’m paranoid about going out in the public, germ-infested world.  Too many sick people out there.  So I guess I will be a hermit and hide in our “cave” for awhile.  I’m sure cabin fever will set in before too long, but I’ll just have to go for a walk or a bike ride or a swim to help remedy that problem. 

Kenny will be going up to Jacksonville this weekend for a few days, and I won’t even have a car (but I have a pretty big “to do list” of things to get done around here).  We went up to Jacksonville last Saturday to look at a boat – a little 1977 25’ Albin cruiser – and we bought it!  Are we nuts or what??!!  He has been looking at Albins for awhile because they’re well built, solid, have nice lines, comfortable for the size, etc.  The boat seems to be in good shape but needs some TLC – cleaning up, spiffing, shining, whatever -- so that's what he will work on this weekend.  We both miss being on the water, so it will be nice to have that opportunity again.  And I think Kenny really needs a project and a diversion in life right now – something to do other than wonder when my next doctor’s appointment is or the next chemo drip or if I’ll feel up to doing anything, etc.  I think it will be really nice for him to have something else to focus on.  The boat comes with a trailer, so the plan is to store it on the trailer for $50/month when we’re out traveling in the RV.  When we come back, we can put the boat in the water, store the RV for $50/month, and take a trip in the boat.  We read a story online about a couple who took a 7-month trip in their 25’ Albin – more power to them – I’m not sure I’m ready for 7 months in 25 feet of space!....although we’ve been in 39’ of space (the RV) for 15 months now and 40’ of space (the houseboat) for 30 years before that! 

I guess I’ve rambled on enough for today.  I’ll post a few pictures of the boat (the gentleman in the cockpit is the previous owner) and sign off. 

I can’t thank you enough for all your love and support.  Keep those positive thoughts flowing.  And thank you for all your blog comments, emails, cards, phone calls, voice mails, etc. – I read them all, love them all, and you all really cheer me up and cheer me on – you give me the will to keep fighting.  Thank you!  And I love you all!

Have a good trip, Atlantis, and come home safely!

A cloudy day is no match for a sunny disposition.  ~William Arthur Ward

With tears in our eyes, we watched the final liftoff of space shuttle Atlantis…..the final liftoff of the space shuttle program.  So sad to see the shuttle program come to an end; so happy they had a successful launch. 

The photos are taken from our campground in Titusville – Manatee Hammock Campground – right across the river from the VAB and shuttle launch pad.  Spectacular view, although it disappeared into the clouds rather quickly.  That’s okay.  We saw the liftoff…..and it was a success!  THAT is what counts!  We’ve been living on the Space Coast for 24 years now, and every launch we have seen (LOTS of them) has been spectacular – they NEVER get old. 

Have a good trip, Atlantis, and come home safely! 

I'm feeling really good today.  No side effects from the chemo or the steroids I have to take before, during, and after the chemo.  Did my 30-minute walk and 30 laps in the pool this morning before the launch.  So far, it's a great day!

              The VAB is just above and to the left of my head.  The launch pad is just above my head.

The final liftoff of Atlantis and the end of the space shuttle program.

One down, 11 to go........

Happiness is not something ready made.  It comes from your own actions.  – Dalai Lama

Had my appointment with Dr. Sprawls (onco) today followed by Taxotere #1.  One down, 11 more to go.  Everything went smoothly except for the fact that my appointment to see Dr. Sprawls was at 10:00 (we arrived at 9:50), and he finally came in the room at 11:35!!  I was very frustrated and grouchy by then – an hour and a half behind schedule at 10:00 in the morning??!!  Fortunately, he’s a really nice guy, and he managed to cheer me up before the visit was over.  Ken had already left at 11:10 – there was just no point in both of us wasting our day sitting around waiting.  So he went home to do the laundry, only to find the washing machines were all full.  Anyway, my “numbers” were good enough to start the next batch of “poison,” and I’m feeling fine so far.  Hopefully it will continue.  I’m not looking forward to these weekly visits, especially the ones that are preceded by an appointment with Dr. Always Late.  I asked him if I had to see him every time, and he said, “Not every time but next time for sure.”  And then probably every other time.  Just gotta bite the bullet.

Hope everyone had a nice 4^th of July weekend.  Ours was nice and relaxing.  On Sunday, we went to the beach at Canaveral National Seashore.  We debated going because we thought it might be too crowded, but it really wasn’t bad at all, and we’re so glad we went.  It was a beautiful day, and we sat under our umbrella for awhile and watched several people riding the surf in kayaks.  It was really entertaining – they had some really good rides and some really incredible flips, too.  Then we went in for some swimming and boogie boarding – great fun.  I took a beating on one wave – finally came to the surface and found one of my foobs (fake boobs) had popped out and was churning around in the surf!  Then my bandana fell off.  So there I was bald and semi-boobless – and Ken and I were laughing hysterically!  Could hardly stand up!  Snatched the foob up and stuffed it back in my bathing suit (only to find out after I got home that it was upside down!).  Anyway, it was a fun afternoon at the beach.

On Monday, our good friends, Debbie and Bill, called and asked us if we wanted to take a ride over to St. Cloud to check out the 4^th of July celebration they were having on the lakefront.  It was a nice ride – out in the country – about an hour from here.  They had all kinds of booths/vendors, live music, demonstrations, etc. all along the lake.  So we walked around there for a bit – it was very hot but fun.  We had lunch at a place called Crabby Bill’s – sat outside overlooking the lake – very nice.

On Tuesday, we decided to go to the beach again.  Got almost all the way out to Canaveral Nat’l Seashore, only to find out the beach was closed!  We knew they closed it a day or 2 ahead of the launch, but 3 days??!!  What a disappointment.  And you would think they could put a sign out at the beginning of the road saying it was closed.  But no, they let you get almost all the way out to the beach before you find out it’s closed.  So we turned around and headed in the totally opposite direction and went to the beach in Cape Canaveral (near Cocoa Beach).  The first 2 parking areas we tried were full, and we were getting really discouraged by that point.  Lucked out at the 3^rd parking lot – a car was pulling out, so we pulled in.  More boogie boarding and fun in the surf!  And yes, I lost another foob!  Well, I found it being tossed around in the surf again, so it wasn’t totally lost.  Guess I need to invest in one of those bathing suits with built-in pockets for foobs – just hate to spend the money, though.  I think they’re around $80-100, and my swimsuit was only $15 at Walmart.  And it provides great hilarity and entertainment when my foobs pop out! 

I have really been enjoying my relatively stress-free week.  It’s nice to “sleep in” – almost made it to 7:00 a.m. one morning!  And it’s nice not to have a ton of work hanging over my head.  I did end up with a little bit of work because Jill didn’t finish her dictation last Thursday, but that’s okay – it’s only a few hours, and the little bit of income helps because with this job no work means no pay.  Nevertheless, I am enjoying the freedom this week. 

Ken really helps minimize my stress level, too.  He has been so supportive and helpful during this whole rotten journey we have been on.  He has totally stepped up to the plate and does a lot of the cooking, grocery shopping, laundry, ALL of the dishes, most of the cleaning, takes the dogs out 3-4 times a day, and drives and/or accompanies me to almost all of my boring appointments.  There is no way I could survive this ordeal without him!  He asked me the other day if I was still writing my blog.  I answered, “Sure am.  Are you reading it?”  He said, “No, I’m living it!”  Ain’t that the truth!  Life as he knew it has changed so much, too.  It’s all about my appointments and how I’m feeling now.  Luckily we can mix a little fun in, too, though – like going to the beach and visiting with friends, etc.

I’m feeling really good and still maintaining a positive attitude.  But I have to tell you a story about a neighbor of ours here at the campground.  He was an older guy – seemed kinda lonely – and he came over to our picnic table a couple of weeks ago when we were sitting outside visiting with Robin and Bunny.  He looked at me and said, “You have cancer, don’t you?”  I guess he astutely figured that out by my bald (although I had a bandana on) and boobless condition.  He proceeded to tell me that his wife died of breast cancer in October.  She was in the hospital for 5 months before she died.  Etc. etc.  I’m really not sure why people feel the need to tell people who are battling the disease about “failures.”  I told him I was sorry for his loss.  And I really wanted to tell him that if the story doesn’t have a happy ending, I don’t want to hear it.  People just don’t seem to understand that when you are on this particular journey, it is not helpful to us for them to share their sadness.  I know it’s a fact, and my heart aches for all the people who have lost loved ones to cancer, but I’m bound and determined to beat it, and I can’t handle hearing about the people who lost the battle……especially to breast cancer.  At this stage of the game, I need to hear the success stories and the stories with happy endings.  And the plan is for my story to have a happy ending!! 

So, on that note, I will sign off for today and go sit outside, enjoy the breeze and scenery, and read a book for a little while.  LOTS OF HUGS TO EVERYBODY!

Happy 4th of July weekend!

In the business world, the rearview mirror is always clearer than the windshield.  – Warren Buffett

Hope you all are having a relaxing 4^th of July weekend.  I know we are.  I’m actually sort of on vacation right now because the doctor’s office I transcribe for is closed all next week.  Unfortunately, we can’t really go anywhere because I’m supposed to start my next regimen of chemo on Wednesday.  And the very last shuttle launch is scheduled for Friday, so we don’t want to miss that.  However, it will be really nice to have a relatively stress-free week without work hanging over my head. 

I just realized that I haven’t written in my blog for awhile, but I guess that’s because there really isn’t too much to report.  I’ve been feeling really good this week except for fatigue.  I did have another blood draw on Wednesday – had to wait an hour because the place was packed, and “my girl” was not there (she told me she’s only off on Mondays; where was she?!), so it took 2 sticks with the girl working that day.  I had warned her (as usual) that I was a tough draw, and she told me that she has a rule that she won’t stick unless she’s sure she’ll get blood.  Guess what?!  She stuck and got no blood!  So she went to the back of the hand and got a tiny bit – enough to run the tests, fortunately.  I’m beginning to sound like a broken record with my tortuous weekly blood draws.  Anyway, I picked up the results on Friday and was very distraught to see that my white count had dropped again – it was down to 2.98 (range 4.3 – 10).  Waaaahhhh!   Fortunately, I was feeling fine, but I was still a bit worried about it.  Knowing the long holiday weekend was coming up, I decided to call the onco office to see if I needed to be worried.  They said they don’t start worrying about neutropenia until the white count drops below 1.5.  So, if they weren’t worried, I was going to try not to worry.  I did talk to my good friend/chiropractor/clinical nutritionist, however, and he gave me some good advice on things to do to boost my immune system.  He always has good advice! 

I also picked up a copy of my hospital records last week.  The type of infection I had was never determined; I guess the antibiotics wiped it out before they could figure out what it was.  In addition to the unknown infection, I was noted to have neutropenia/leukopenia (low white count of 0.5), anemia (low red count of 8.4), thrombocytopenia (low platelet count of 26), and hypokalemia (low potassium of 3.0) – presumably caused by the chemo and/or the infection.  Those levels have since normalized (since I was transfused 2 units of packed red cells, 1 unit of platelets, and given IV potassium), except for the drop in the white count again. 

At any rate, I’m feeling good now.  I’m just hoping my low white count doesn’t postpone the next chemo regimen again.  Not that I’m looking forward to putting more poison into my body, but I AM looking forward to getting all this stuff behind me.  No more delays, please. 

Last night we walked down to the river here in the campground and had a great view of the Port St. John fireworks display.  It wasn’t one of the best displays we’ve ever seen, but it was quite good for a small town, and the best part was that we didn’t have to deal with any crowds or traffic! 

It’s time to go for a walk and maybe a swim.  Yesterday morning I did my 30-minute walk followed by 30 laps in the pool.  I’m going to try to keep that up this week.  The only pool deterrents are thunderstorms (every day last week) and/or lots of screaming kids.  I tried swimming laps one day when the pool was full of kids; it didn’t work out too well. 

Happy 4^th of July, everybody!  Enjoy the holiday weekend!