Thursday, June 20, 2013

Lunch today at Max's Autodiner

Hoping to see some of my KC friends at Max's Autodiner at 80th and Wornall today.  I'll be there at 11:45.  If you've never been there, it's a little place where you order inside then eat out on patio tables.  It's very inexpensive but the burgers are highly rated.  There's a big parking lot next door. 

Sunday, June 16, 2013

Going to Kansas City, Kansas City here I come!

We should arrive Wednesday mid-afternoon if everything goes as planned.  We are leaving NH, tomorrow morning and plan to drive to Bedford, PA.  Rick has made hotel reservations so we won't be hunting for a hotel at the last minute.  Tuesday's destination is just outside Indianapolis.  You can tell we are getting older - in the past we would aim for 12 hours of driving.  Now that we can take our time, 8 hours is the goal.

I had chemo last Wednesday but I needed a transfusion on Friday.  My next treatment is scheduled for 6/26 but we'll likely push it off for a week.  I could use the break, to be honest.

Thursday, June 6, 2013

Tumor markers...

188.5!!!   Loving gemzar, tumor markers down from 275!

Wednesday, June 5, 2013

Another Wednesday, another treatment

We showed up at 8:30, on time for our appointment, I had taken my pre-meds, and my blood draws were quick.  We met with the PA and were out of his office at about 9:45 but the chemo wasn't administered until about 10:45.  I don't know why it takes so long but it makes me crazy.  The chemo takes 30 minutes.  So we spend a lot of time sittin' and waitin'. 

I requested a prescription for Marinol as there has been a lot of recent press about it being very effective.  So we 'll see how that goes.  I've tried other variations of MJ and really haven't liked any of it.  And then there's the part where it doesn't seem to have any real effect on me.

We picked up my sister and went to lunch at the British Beer Company.  I had half a reuben, and Rick and Mona shared a pizza that looked pretty good.  We'll have to go back when I'm in the mood for pizza. 
That's about all the news until I get the results of the CA27-29 tumor markers.  If you remember, they were 275 at the last check.  With any luck, they will drop another 50%...a girl can dream!  I'll let you know when I hear.

Wednesday, May 22, 2013

33rd Anniversary Chemo!

Nothing like celebrating your anniversary while getting your chemo!  I had mentioned on the way to Dana Farber that today was our 33rd anniversary.  Rick had not realized that today was 5/22 so while I was waiting to be connected to the Gemzar, he went out to the local Hallmark store, bought a balloon, card, and truffles.  He's pretty special!
We had a little pre-treatment surprise - while my red blood count was OK, my white count was well below the safe range. So we had to discuss whether we'd delay or skip treatment.  Or I could have treatment and come back tomorrow afternoon for a Neulasta shot.  I did choose this last option as I really didn't want to skip a treatment that has been highly successful.  Having the Neulasta shot means I will need to take Claritin for a few days to ward off the bone pain it causes when it stimulates the bone marrow. 
Hope everyone enjoys the Memorial Day weekend.

Friday, May 3, 2013

Beautiful weather and beautiful results!

The weather here in New Hampshire is fabulous - sunny skies and temps between the mid 60's and low 70's.  And to go along with the gorgeous weather, I have more good news - my tumor markers dropped from 500 on 4/11 to 275 on 5/1!!!  When you find a chemo that works, the results can be dramatic!  And the better news is that this chemo is not too harsh with its side effects.  My blood counts are a little low, but not so low that I couldn't have treatment on Wednesday and I have my week off so now I've got two weeks for blood counts to rebound. 

And did I mention that I went on another little San Juan with my sister!  We spent six days oceanfront and by a nice pool enjoying the sun and 80 degree weather, and maybe a cocktail or two :>)  We had a really great time despite a few service issues with the hotel (Marriott).  She got really lucky in the casino and came home with all her money...I, on the other hand, was not that lucky.  But it was fun hanging out with her and it's a good thing she has a strong grip - she had to open every single water bottle because I had no chance.  Those caps were ridiculously tight.  And she treated me to a great meal for my birthday in Old San Juan.  We both came home with fabulous tans - we were at the pool in our favorite sun-worshiping position by 8:30 every morning!

And one more piece of good news - I have a new great granddaughter. Katie and Deven (Ron's Christine's son) welcomed to their family Miss Lilyana Regina, 7 lbs 14 oz  this past Tuesday.


Thursday, April 18, 2013

Happy Dancing is in Order!!!

My oncologist sent me this message a short time ago:

Hi there,

It looks great. The report says there is a new spot in the liver, but that is compared to December. We don’t know what that looked like before we started the gemzar. The chest looks fantastic, and the adrenal lesion is no longer active.

So, let’s keep going with the gemzar!
Actually, I think the liver met was there according to my CAT scan in January.
So what we have here is significant regression!  Woohoo!!!! 
Gemzar is my miracle drug!

Friday, April 12, 2013

Unbelievable - Gemzar has worked a miracle!

I just got an email from my oncologist - my tumor markers have dropped from 1525 or so to ... 500!!!  Unbelievable - 1000 point drop.  I guess Gemzar is the drug for me! 

I have scans next Wednesday, and I am planning on seeing lots of regression!

Tonight we celebrate!

Wednesday, April 3, 2013

Carefree was fun and now it's back to business

We had a beautiful six days in Carefree, AZ, with brilliant sunshine and temps in the 70s.  Rick's golf buddies flew in on Friday morning and the three of them played golf every day through Monday.  They chose courses nowhere near the resort, so they had long days and I had lots of time to enjoy the pool.  On Monday I had a hot stone massage, which was heavenly and I won't be waiting years for the next one!

We enjoyed some great dinners and conversation after golf.  I must admit I was lucky that the restaurants I picked were pretty good and I think the guys were happy to let me make the dining decisions.

The Carefree resort was nice and a good value, the suite was big and nicely furnished.  I wouldn't hesitate to go back.  But all good things must come to an end and we flew home on a Jet Blue red eye that arrived at 5:30 or so in Boston. I actually slept on the flight - the beauty of a good sleeping aid - and then took a couple naps during the day. 

Today was chemo day so we showed up at 8:30 but the medical team was running behind so despite my efforts to speed up the process by taking my own pre-meds, we still didn't get out of there until 11:15.  The chemo is a 30 minute infusion and it amazes me how much time we spend in "wait" mode before it can be started. 

After finishing, we picked up my sister and went to lunch at Olive Garden.  I haven't eaten there in years but I must admit the soups are good.  I had pasta fajioli and caesar salad, Mona and Rick had zuppa toscana and the house salad...and the breadsticks.  I ordered the little zeppolis for dessert.

My labs were mostly in the good red blood count and hemoglobin were a litle low but platelets were good and my white blood count is good.  It appears the 50% reduction in the chemo is the right balance to keep my counts in the safe range.

Friday, March 15, 2013

Good's working!!!

I got my CA27.29 score and my tumor markers have dropped from 1826 on 2/20 to 1578 on Wednesday.  That is the first regression I've seen!  And I am feeling better - the cough from the lung mets has completely disappeared.  Of course, a scan will be more definitive and I think that will happen after I finish the 3rd cycle.  Hopefully, my blood counts can hold up to the 50% dose. 

I am feeling a bit better and my appetite seems to be making a comeback so my optimism (and my family's) has been boosted this week. 

There's a little fun in the works - we are flying to Phoenix next Wednesday evening (after my treatment).  Two of Rick's golf buddies are also flying out to play golf with him.  He needs the break and I know the guys will have a great time while I soak up the warm Phoenix sun, sitting by the pool.  And for a change, it looks like the weather is really going to cooperate!

Thursday, March 7, 2013

Required a transfusion

This particular chemo - Gemcitabine (gemzar) is notorious for knocking back your blood counts. Really, any chemo can cause low counts, some are worse than others, and we are all different so what knocks mine back may not do the same to someone else.

Last week my counts were low and so they gave me just 50% of the standard chemo dose. My white blood count was 1.76 with the low end of normal at 3.98; my red blood count was 2.4 with the low end of normal at 3.93 and my hemoglobin was 8.2 with the low end being 11.2.

We were pretty sure that even the 50% dose would cause even lower levels, which is why I was scheduled for labs yesterday. And that is what happened - my red blood count went down to 2.21 and my hemoglobin dropped to 7.6. My platelets were down to 51 with the low range at 150. So there was no question that I needed the transfusion - I think hemoglobin below 8.0 is the criteria. And I couldn't walk even a few steps without being out of breath, so it was a no-brainer decision.

They called the blood bank and requested two units and the blood was couriered over to Dana Farber. It arrived about 1 p.m. and it took about 3 hours for the transfusion. I have to say I felt much better after the treatment. When they started the transfusion, my bp was about 102/47 and it was up to 112/65 when it was finished. And my heart rate was 100 when we started but went down to about 78 afterwards.

So that's the story. My next dose (next Wednesday) will probably be at about 80% of the full dose - I'll not be able to have a 100% dose again because it would be dangerous.

The good news is that I think it's working. My cough ( probably from lung mets) is pretty much gone. We were thinking about adding abraxane to the mix but we're going to hold off as it would add to the blood count problem. 

Thursday, February 28, 2013

Unwelcome Posters

I have deleted some Anonymous comments because they seem to be spammers.  In the future, please put your first name or your initials at the end of your comments if you are not using your Google account or something I will recognize.  I'm going to delete comments from posters who don't seem to be authentic.

It's unfortunate that this occurs, but it's a big world out there and there are those who think it's ok to spam.

Thanks for your help!

Saturday, February 23, 2013

Our trip to Kauai

Sunset from our cottage on Nawiliwili Bay

We spent 11 days at a small cottage overlooking this bay.  The next morning the Sapphire Princess arrived in port.  It remained until mid-afternoon on Thursday.  It's really quite a sight watching it come in and out of port requiring some expert maneuvering.  You can see the tugboat guiding it.

View of Kilauea Lighthouse, which was cordoned off for restoration.  There will be a centennial celebration in May.

The area is also a bird sanctuary but unlike when we were last there in May 2010, there were few nesting birds.  It is winter and perhaps too early and maybe too chilly for nesting.

Overlooking the marine wildlife sanctuary and Bali Hai in the background

North shore view


    Note that while everything was green, flowers were scarce.  We figured out that the plumeria trees drop all their leaves at some point during the winter, then bud out from the top of the branches.  The bare trees look "dead".

    Plumeria tree - pretty bare

    Starting to bud out

    And this is what they will look like in a few weeks - this picture is from May 2010.

    The same is true of bouganvillia and most of the other flowering shrubs.  They were all just starting to show color.

    My advice - if you want to see and smell flowers, don't go to Kauai in early February!

    Time is getting away from me, and Rick and I are going to the movies so I can say I've seen at least one of the Oscar-nominated films.  So I will leave you with a link to all the pictures, including the ones from 2010.  We didn't take as many on this trip but between the two, you should get your fill!

    Kauai February 2013

    Kauai 2010

    Friday, February 22, 2013

    Ah, back to reality...

    We had a great time in Kauai and I promise pictures and the story real soon.  First, a little update on me and how I am doing. 

    I had a lot of nausea while on carboplatin and my reward for putting up with it was nothing good.  The tumor markers, as I mentioned earlier, are up over 1000 and the CAT scan from yesterday shows lots of progression, including into the liver.  I was sure hoping it never got to that point but this cancer is so damned aggressive and nothing, so far, seems to slow it down. 

    So I am now on Gemzar (gemcitibine) - two weeks on, one week off.  I had my first treatment on Wednesday and I seem to be doing ok.  No nausea so far and I've been able to eat full meals.  After a couple cycles, we'll be checking the tumor markers to see if there is any sign of regression.  This chemo is known to be tough on blood counts, and I am already anemic so I'm sure I'll be watched closely.  My oncologist doesn't like to do transfusions, and I think I agree with her. 

    In the meantime I have located a lab that will take my tissue from a fresh biopsy and perform 96 test assays to uncover a chemo that looks promising.   If the website is correct, the cost is $510, probably  not covered by insurance, but worth every penny if it comes up with the "killer chemo" that I so desperately need.

    Speaking of insurance, why is it so hard for everyone to figure out that my Blue Cross Blue Shield is primary and Medicare is secondary.  The rules are clear - if your employer (or in my case my hubby's employer) has more than 50 employees, then the employer's insurance is primary.  I think this is going to be an ongoing battle and I am ready to ask BCBS for a nurse case manager to help us with this stuff.

    Wednesday, February 6, 2013

    Must there always be a spoiler???

    Ready to go tomorrow morning at 3:45 am for our 6 a.m. flight to Cincinnati, then on to LAX and finally to Kauai.  I'm almost all packed - just a few toiletries and electronics to organize, the meds are all set and head coverings are clean and ready.

    So what's the hitch, you ask?  Tumor markers...that nasty CA27.29...has risen dramatically in the past few weeks, now topping 1000.  Carboplatin appears to be a bust, the generic Actos has not made it work better, and so we will be creating a new plan for when we get back from Kauai.

    The current thought is weekly Abraxane and Gemzar, same as the carbo - 3 weeks on, 1 week off.  I will have a CAT scan either the 21st or 22nd to set another baseline.  Dr. Walsh will discuss this with Dr. Chen.  I think this protocol will mean what little hair I do have is soon gone, along with eyelashes and eyebrows...boohoo. 

    I am going to lobby for some chemo sensitivity testing on my tissue samples.  Surely there is a chemo that my tumor cells will detest, I'd like to discover which one sooner rather than later.   I feel like we are throwing darts, hoping something sticks.  There are still lots of chemos that could be the right one. 

    In the meantime, we are going to have a fabulous trip and forget about this nastiness as much as possible.   Soon to be entering the "no cancer" zone!

    Aloha, friends!!!

    Wednesday, January 30, 2013

    Our Road to Kauai

    Little kitchen - sitting area
    Beautiful seashore

    Our suite with lanai over looking the Bay

    We were planning to go to Hilton Head or some other warm location along the eastern seaboard but the extended forecast for now through the 18th promised lots of temps in the 60s unless we went all the way down to Miami, which would require tickets and $300 a  night accommodations if we wanted to have an oceanview hotel room. 
    Well, guess what?  It's not that much more to cross the Pacific and head to Hawaii.  The accommodations are half the price and who wouldn't rather be in Kauai than Miami?  And Rick will get to play golf so he is one happy camper. 
    And today I finally got the super drug that should mean the end of the nausea that I've been putting up with since starting this chemo protocol.  Emend is a wonder drug and if it works as well as before, I am finished addressing the porcelain goddess.
    So off we go on 2/7 and head to our favorite island.  The details are almost complete.  The tickets are purchased, the car is reserved, the cottage is reserved and I just need to reserve our ride to the airport and PACK!!!
    And I can eat potato chips!!! First time in many weeks that a chip taste good to me and I can swallow them.  Can popcorn be far behind?   Thank you, Emend!!! 

    Monday, January 28, 2013

    Mets are melting!

    Like the wicked witch in the Wizard of Oz, it appears those pesky brain mets are actually melting away!  My PA panicked us last Wednesday after he looked at the brain MRI, but apparently all was not as bad as it seemed.  I saw Dr. Zhou, the Radiation Oncologist, this morning and she showed me the pictures.  There are 5 remaining mets, the biggest is 1 cm.  It has a little swelling around it so I will take 2 mg of decadron to hopefully eliminate it.  She thinks my occasional nausea is coming from the chemo and not from my brain mets.  I'll keep taking the anti-nausea meds as needed and monitor the situation.   Apparently the radiation continues to work for several months after the treatment, so we will be expecting them to disappear over time.

    And the best news is that we can plan another little junket after I finish this cycle of chemo.  We are thinking about Hilton Head, but the weather may not be cooperative.  It needs to be in the 70s for me to think about enjoying the sunshine on a beach.  So I am looking for alternatives, maybe an island like St. John's or St. Thomas.  I think we want to keep it "American" and not an excessively long plane ride.  And there must be golf for Rick!

    Wednesday, January 23, 2013

    Loved Florida, but it's a big dose of reality today

    We got back on Sunday from ten days in Florida - glorious warmth and sunshine, at least most of the time.  We spent our first few days with our friends Bob and Joyce at their wonderful home in West Palm Beach.  Enjoyed a couple of nice dinners including at Seasons 52 - one of my favorite Florida restaurants.  All the entrees are less than 450 calories and the desserts are presented in double shot glasses - just enough to satisfy your sweet tooth without wrecking your waistline.

    Then we moved on to Marco Island, one of the nicest beaches on the gulf side.  We spent three nights there, and I have to tell you that Rick spent six hours in a beach chair under an umbrella.  I can't even imagine the last time he did that.  He would normally go play golf and then meet up with me later on the beach.  But it was exceptionally relaxing and he enjoyed every minute!

    We then drove up the coast to Lutz, north of Tampa. He played golf with the guys, my friend Ann and I met a couple of blogger friends for lunch, and walked around the mall a bit.  The temperature was heading downward so we didn't get to enjoy their pool.  As a matter of fact, I was wrapped in a blanket most of the time.  The tile floors gave off a chill that I couldn't shake. 

    And I wasn't feeling so great through most of the trip.  Daily nausea attacks and limited appetite made me a very fussy houseguest.  There's not a whole lot that tastes good these days, although I did discover ice cream, mashed potatoes and gravy, scrambled eggs and mac & cheese.  And...Rick is off to the store to get fixins for Chinese Pie.  I think it's something I will enjoy and it will be fun to watch him whip it up!

    Yesterday I endured a brain MRI - and endure is the word.  I've never had one and it has to be the most uncomfortable test ever.  The pounding of the magnets was matched by the attempt to listen to music through headsets.  All in all, it just sounded like a cacophony and I couldn't wait for the 45 minute test to end.  Afterwards, we went to Friendly's because I had earned a treat - a "happy endings" sundae with chocolate and coffee ice cream, hot fudge, whipped cream, nuts and a cherry!  I almost licked the dish - it was the best thing I tasted in days.

    Today I started the second round of weekly carboplatin treatments.  We were there at 8:00 promptly to try and minimize the waiting.  But alas, our PA was late so we were there for 3 hours for a 30 minute treatment.   Labs, exams, just takes time.  And the PA noticed one of my pupils was smaller than the other, he went and looked at the MRI pictures and the brain mets are back, or were never gone completely.  I'm back on 2 mg of decadron a day and I'll find out next week what's next as far as treatment for the mets.  I didn't have a discussion because there was no formal report and the Radiation Oncologist wasn't on site.  Next week...

    Tuesday, January 8, 2013

    Maybe, a reason

    When you get diagnosed with breast cancer, you can't help but wonder what caused it, why me, is it genetic...  In my case the BRCA testing didn't reveal anything genetic.  But this article got me thinking...I may have been given DES during my second pregnancy.

     Some of you know that my first pregnancy ended at 6 1/2 months and resulted in the birth of a premature little girl who died three weeks after birth.  That was a troubled pregnancy and I am sure I was given something to prevent early labor, as I had bleeding and cramps.  When I got pregnant again several months later, I clearly remember being given a prescription for "hormones to make sure it doesn't happen again."  It would be almost impossible to go back 43 years and find a record of my prescriptions.  And I doubt the OB/GYN would even be alive at this point.

    Fortunately, only one of my children was probably exposed to oldest son.  Unless...we all got it in our beef:

    I'm not going to fret over it because what's done is done.  But it does show, once again, that we never REALLY know about long-term consequences of drugs until millions have been exposed and the harm starts to appear. 

     One word of advice - keep track of the drugs you've taken...forever.

    Wednesday, January 2, 2013

    Things are running a little slow here today

    We arrived at Dana Farber at 10:15 and it's now 12:30 and I'm still not hooked up.  Ugh!  The impact of the holiday is taking its toll.  I did just now get my pre-meds and the saline is now connected.  Everything is just slow and my laptop, which has a fairly extended battery life, is going to die before I'm done. 

    My labs look good although Red Blood Count is a little below the range.  My whites are fine, my hemoglobin is teetering on the low end of the range, and my lymphocytes are way low.  My glucose was 105 (go me!)  All that said, chemo is a go for today.  Dr. Walsh reduced my decadron from 6 mg to 4 mg.  Maybe by the time I've had a few more treatments, we'll be able to eliminate it completely.

    I lost two pounds since last week, probably because nothing tastes particularly good (except the Popeye's chicken and mashed potatoes I had yesterday) and many foods are too dry for me to enjoy.  The weight loss is making up for the pound a week I gained last summer when taking Xeloda.  I hated to see a chemo fail, but I would have been a blimp if I had continued on it for much longer!!! Even my beloved popcorn seems to be hard to swallow, as do other salty foods.  I'm beginning to understand my good friend's preference for sweet things.  Maybe I can jazz up that popcorn to make it more appealing!  Or I'll just have to eat all that sugar-free chocolate I got for

    I had some mild nausea after the last treatment - a little like morning sickness.  A little compazine and some food usually took care of the problem.  Hopefully this treatment will be no worse.  I'm counting on it being uneventful - we have planned a trip to Florida after my next treatment (we are leaving on the 10th for 10 days).  I am looking forward to some nice warm sunshine and beach time.