Wednesday, August 31, 2011

Chemo #6 done...75% complete!

I am home and relaxing after finishing my 6th treatment (2nd Taxol) and I am 75% complete.  I can see light at the end of the chemo tunnel and it is calling me like a lighthouse beacon! 

Christine and Allison were with me today, and they made the 6 hour marathon go by quickly.  They went in with me to see the PA and he asked if we were all on!  We played cribbage, they went to lunch then brought back clam chowdah and homemade "no sugar added" apple pie from a nearby apple farm, and some iced tea (which turned out to be quite the hunt - the restaurant had no "to go" cups!)

We are thinking about "movie time" for the next session.  Popcorn, Milk Duds, and a chick flick should help pass the time.

Because I tolerated everything so well last round, they reduced the Benadryl from 50 mg to 25 mg.  I am not using the Scopolamine patch (unless I end up needing it) because I had zero nausea last time.  And so far, I don't have any significant neuropathy.

My White Blood Count was 3 which is pretty low.  It was 12 last time, so I didn't get Neulasta.  In theory, Taxol doesn't tank the whites.  But since I have just 3 left, I can only surmise that I would be in the "nothing left" category by my next chemo session.  And I don't want anything to delay Day One of PFC (Post Final Chemo or as many warriors like to say, Post F#$#ing Chemo). 

 And then, the ever-accommodating Financial Advisor, along with my chemo nurse, spent half the day trying to get approval from Anthem BC/BS to give me the shot tomorrow.  Anthem has no problem with me having the shot.  But they want DF to order it from a specific pharmacy who would overnight  the drug.  Then once it arrives they would dispatch a nurse to do the injection.  But...they cannot guarantee that it would arrive in time to get the nurse here within the 72-hour window when the Neulasta needs to be injected, in order to be effective.   Apparently, Anthem is the ONLY insurance company that DF deals with that cannot understand that the New Hampshire facility is a satellite clinic and not a hospital.  Let's hope this is the LAST Neulasta for me!

Monday, August 29, 2011

Chemo, Rads, Recon...lots coming up.

Chemo #6 is coming up on Wednesday and this will be the 75% completion mark.  Christine and Allison are going to keep me company, giving Rick a break.  I think Christine is looking forward to seeing me under the influence of drugs, especially when I described how I felt after they infused 50 mg of benadryl right into my veins.  I do intend to ask if they can cut that dose in half as I had no reaction from the first infusion.  Granted, one can develop an allergic reaction to anything at any time.  But they could always stop the infusion and give me the rest of the benadryl if that were to happen.  If they are not willing to reduce it, then I plan on taking a nice long nap while I have that 3 hour drip, that 3 hour drip!  I suspect there will be pictures and/or videos for posterity's sake...hehehe.  I continue to tolerate chemo much better than anticipated.  I do have a few side effects, and I have a pill for each and every one of them!  About the only one for which there is no easy fix is the fatigue, which seems to abate a little after the first week.  Chemo effects are cumulative, and I will probably feel a bit more fatigue as I get closer to the end of chemo.  But I can deal with that easily enough.  Well, with the help of another little pill!

And oh, I pill for the hair loss.  While I still have plenty of stubble on my head, and fuzzy longer hair on my legs (what's that all about???), my eyelashes and eyebrows are slowly disappearing.  I'm hoping I keep enough of my brows to figure out where they are supposed to be - eyebrow powder does wonders. I'm not going to even try to apply fake eyelashes, I'll let eyeliner and my glasses disguise that problem. 

I now have three appointments with the Plastic Surgeon for tissue expander fills.  The first is in about two weeks and will include another discussion about DIEP.  I've just about resigned myself to  "it's not gonna happen" because I haven't gained any weight on chemo and I'm not going to try to gain weight so I can have fleshy boobs rather than implants.  I've had some recommendations to get an opinion from the DIEP experts in New Orleans. 

 Center for Restorative Breast Surgery

The facility and doctors are some of the best in the country.  It's not covered by our insurance, though.  And the travel expenses would be excessive...and I'm not going to New Orleans unless I can have fun!  I will ask for a referral to a DIEP surgeon in Boston, and I am sure there is a good one somewhere within the fantastic hospital networks.  This question will get answered, once and for all.  If it's just not going to happen, I will mentally "move on" and have additional fills to get to my desired bra cup size. 

By the way, have I mentioned how much I really detest those expanders?  They are never comfortable.  Not ever.  They are omni-present, day and night.  I will rejoice when they are gone.  Seriously rejoice!  Every single woman who has to go through the expander process feels the same way.  Some day there will be a better way. 

And then there is radiation, the "complicated" radiation that will require a highly skilled radiation oncologist.  I posed my radiation question to Johns Hopkins, where a JH Nursing Professor responds to individual's questions about breast cancer treatment, options, etc.  I had sent an email to her because their website was malfunctioning and today I received a personal response.  This lady, Lillie Shockney, is a saint - you can only imagine the number of questions that are submitted via the website, never mind all the other methods of inquiry.  She confirmed my thoughts, and here is a quote from her response:

It will be a bit complicated because there isn’t good research yet to direct radiation oncologists regarding this. it makes sense though that since you had mammosite and therefore your axillary node area and intramammary node areas were NOT previously radiated that you should be able to get that radiation done this time, which is also where you need it most. If you want to come to us for an opinion about this call 410-955-8964.

The bottom line and current "standard of practice" is that you can only radiate an area one time.  Everything I have read confirms what she says.  I was not able to find any clinical trials in the US that seem to be working on this issue.  Well, we know what to expect, we know what questions to ask, and we need to find "the best of the best" radiation oncologist. 

By the way, we survived Irene!  She lost most of her punch by the time she arrived at the lake.  But saturated ground caused lots of fallen trees and lots of power outages.  Ours went out around 11:00 a.m due to a transformer blowing out, and was restored sometime between 5:30 and 8:30 (we left to go out for dinner with the family).  We were mighty happy to get home to tv, lights, and functional flushing of toilets.  I think we might have been on the search for a hotel room if we'd returned after dinner to continued darkness and no running water.  Not sure how much longer before Rick would have been displaying symptoms of tv!  And I am not sure how much longer I was willing to tolerate dumping a bucket of water into a toilet to facilitate flushing, not to mention the thought of not having a "certain" morning shower. 

It will be a very busy September!

Thursday, August 25, 2011

Free Kindle Reader application, Free ebooks

I was going to post this on the Blogger Babes site, but then I decided that some of the Blogger Dudes might be interested in this, too.

You can download the Kindle application for your laptop, iPad or smartphone, for free, from Amazon:

Then every day Amazon is giving away ebooks, you just download and read.   Sign up here.  You will need an Amazon account to do this, but that's easy.

I have been getting my free book notifications through Facebook.  You can do it that way or get an email, whichever you prefer.  There have been some highly rated books that they are promoting, and there is a wide variety of genres.  I know some of you like the smell and feel of the hard copy book, but it's hard to pass up free.

I hope you find something you like!  I've downloaded quite a few.  I can't read outside on my laptop due to the kids are already talking about getting me a real Kindle or other eReader for Christmas.  I've promised not to buy one in the meantime. 


Wednesday, August 17, 2011

Wow! I've had quite the hangover...

too bad there was no real partying involved, just a little benadryl.  Well, maybe, a lot of benadryl - 50 mg dripped right into my veins.  And that stuff scrambled my thoughts and slurred my speech!  I haven't felt like that in more than 20 years.  I guess the good news is that I won't suffer the "hangover" that would accompany a real drinking binge.  I wanted to sleep, I really did.  I think the chemo nurses were taking bets on when it would happen (I've never slept a wink during a treatment), they thought I slept because I had my eyes closed a couple times.  But nope, they were wrong!  Damn steroids!!!  I think there was a battle royal going on for control of my "inner sleep" and the steroids won out.  Joe and Rick were my company; and like a good hostess, I kept talking even when I had to close my eyes and try to slowly form my sentences. 

And oh, the thirst!  With all that benadryl, a claritin this morning to ward off bone pain, and a scopolamine patch, I am drinking everything in sight.  And I had a nice bowlful of grapes...after I slept.  Yes, once we got home, Rick went up to work for a while; I turned on the Food Network, and slept for about 45 minutes.  I woke up with much less fog but a bad case of cotton-mouth.  I ate a bowl of red grapes that were really delicious, nicely crisp (thank you Idylwilde Farms).  Rick brought me some dinner and I am still drinking.  

We arrived at the center at 10:00, they took me to the Infusion Center right away, then accessed my port and drew blood for the CBC.  Then we waited for a while - they were busy, the doctor was busy and it was after 11:00 before we saw Dr. Walsh.   She finally appeared and we talked about how I was doing (which is much better now that the horrible fatigue has abated).  She asked me what supplements I had heard to take, I told her Vitamin B-6, L-Glutamine and Acetyl L-Carnitine.  She nodded her head in approval and I asked her to see if she could find out how much ALC they were using in the ongoing clinical trial to determine if it prevents neuropathy (the answer she got is 500 mg 3 times a day).  Hopefully, these things will help keep those nerve endings nice and healthy. 

We talked about all the pre-meds including the anti-nausea meds that she would order.  I'm a big believer in "if it's not broken..."  I was happy to hear that the anti-nausea meds would all remain the same.  And there was no change in the Decadron - just 6 mg - which also pleased me.  In addition, I would receive Pepcid (apparently Taxol can cause some serious heartburn) and the Benadryl.  Taxol is one of the Taxanes (Taxotere and Abraxane are a couple others), which is made from the Pacific Yew tree.  Because of the solvent that is used with Taxol, it can cause severe allergic reactions almost instantaneously.  But like everything else so far, my body didn't overreact and seems to be tolerating the chemical onslaught fairly well.  I do think I'll ask for less benadryl next time around. 

We quickly discussed my "complicated" radiation situation and she set up an appointment with
 Dr. Matthew Katz   I'll be seeing him the week between my third and fourth Taxol treatment. 

And now...drumroll please...the numbers.  My tumor markers (normal is 38 or below) were 64 in April and are now down to 42, almost there!  My white blood count has recovered nicely and is once again just above the high end of the range.  And my red blood count is staying right where it's been, just below the low end of the range but not too bad.  Dr. Walsh said that she has  never had a patient's WBC tank enough from Taxol to need Neulasta, so I am very optimistic that I will get through the next three treatments on time with no issues.

For my diabetic friends or any others who are interested in the neuropathy clinical trials and might want to try Acetyl L-Carnitine, here's a link:  Neuropathy Clinical Trial

And last but certainly not least, I want to thank the Good Wishes Program of Franceluxe for the beautiful headwrap they sent me, at no charge, along with a greeting card personally signed by each staff member.   And my name and city is on the wall of their offices, along with that of each person to whom they have sent a free headwrap or scarf.  It's a fabulous program and they are providing a beautiful service.   Rick teases me because I said I would never wear a scarf or headwrap because I thought it made me look like a cancer victim.  But that headwrap is beautiful (thanks to all of you who complimented the wrap), and comfortable, and I am going to wear it proudly, especially when he is wearing one of his "comfy" but not my favorite tshirts.  You see, he told me that he prefers me in a wig or a pink ballcap; I told him I prefer it when he wears a golf shirt.  He has lots and lots of golf shirts and tshirts, I have one headwrap and a handful of scarves.  This could make for an interesting and fun wardrobe battle!!! 

Five down, three to go!

Tuesday, August 16, 2011

We missed the race, but we were represented!

They walked for me!
I don't remember exactly what year it was, maybe 1996 or so, when our friends John and Donna told us that Donna had breast cancer.  It was a shock, of course.  She was very young, not even 40 I think (sorry Donna, guestimating at some of this).  Shortly after, Donna asked us to walk with them in Kansas City's Komen Race for the Cure; and thus began a long tradition of friends getting up very early that Sunday in early August, the guys passing on their usual tee time, and along with a few other family and friends we met at the race location and participated in the Race for the Cure.  Donna and some of her family always did the 5k; some of us occasionally did the shorter version.  But we always did it - we started out together and we met up afterwards for breakfast.  It was a fun atmosphere, even though the reason was serious.  And it was even more serious when Donna had a recurrence and threw the proverbial "book" at her second bout.

 Donna became very active in the Komen Foundation and even walked in the Washington, DC, event which was ginormous by KC standards.  She had a lot to do with how the Kansas City event grew over the years.  She and her fellow volunteers organized a survivor event, which I attended with her last year after I, too, became a survivor. 


I got involved in small ways.  I volunteered to help distribute team race materials for two years.  One year I brought our friend Angie, who was a survivor and had never participated in the race.  By chance, she was interviewed by the local press as we walked the race and ended up in the local newspaper.   And I had a lady who worked for me - Bev.  Bev had been a Stage IV survivor for more than a decade and was not doing so well that August.  I wanted her to see how many people were out there, supporting the cause, to find a cure.  She didn't have enough energy to walk, but Bev and I climbed up to a crossover and got a view of more than 20,000 people that year.  And we did get her to the survivor parade.  She ALWAYS wore a smile. 

Breast cancer has taken both of these brave ladies. 

Some people complain about Komen, they think they've gotten too big, they think they've cheapened the brand by letting too many businesses use "for the cure" and they are spending too much money fighting a lawsuit to protect their brand.  I'm not sure how I feel about all this "political" stuff.  What I do know is that up to 75% of proceeds from local races remain in the community for breast health screening, education and local research projects. 
Kansas City 'Races for the Cure'

And these races give hope and put smiles on the faces of hundreds of thousands of survivors across this country.

Maybe next year!

Sunday, August 7, 2011

Farewell, my friend Janet

She always had a smile.  You could see it through cyber-space even when you couldn't see it in person.  You could feel it in her postings, when she talked about her family and even when she called me to tell me of her diagnosis and how she was ready to fight.  I can feel the warmth of her smile now, as she has completed her journey here on earth and is smiling down from the heavens on all her family and friends.

Wednesday, August 3, 2011

I am so lucky!

I finished AC #4 today, hitting the halfway point for the chemo part of this long journey.  Yes, it is long.  When I am finished with reconstruction sometime next year, it will be more than two years.  But I am lucky because my body has not failed me.  I have remained strong enough to be able to travel this road, despite my initial concerns about chemo and its ability to cause some pretty serious side effects.  Yes, sometimes I feel like my body has become a toxic waste dump because for every side effect, there is a pill! 

But at least I have the opportunity to put up a fight, to give it my all, and hopefully kick cancer's a$$.  I have a friend, someone I met through a diabetic blog that I have participated in for several years.  I've met this friend in person, twice, when I was in Florida.  The first time was a business trip that I extended for a weekend, and she drove to me and we had a great lunch.  The second time was this past February when we had a family trip to Disney World.  She and another lady from our blog met me in Orlando for lunch.  Each time we had lively conversations, as if we'd known each other for years.  And in a way, we had.  Diabetes may have brought us together in the first place, but sharing everyday life, family,  special moments...those are things that have made us a close-knit group who really, really care about one another. 

When my friend found out that she had a very aggressive cancer that had spread to her liver, she reached out to me.  She wanted my help to advise her on treatment options, to support her.  I was so honored to be among those that she was trusting, essentially, with her life.  It was a big responsibility, one that I took to heart. 

But the body is unpredictable and cancer can wreak unthinkable devastation before you even know it's there.  My friend's kidneys shut down this past weekend, and her body can take no more.  She can no longer fight this demon, the damage is too great and there is now nothing but comfort and support for her and sadness for her family and friends.  She is a wife, mother, and grandmother - a very proud one who took great pleasure in her family, especially the family cruises that she organized.  I remember her being thrilled that she had found matching t-shirts for the entire family, and she shared a picture of the whole family sporting their shirts on this year's family cruise.

She and her family are very strong in their faith and I am sure that trust in their God will help them as she goes through this transition.  It won't be easy, but they all have beautiful memories that will help ease the pain.

I am so lucky - I still get to fight the battle, win the war and make more memories.