It's Really the Mirror that Sucks...

...because every time Nanc looks into one, she is reminded once again of the fact that she has cancer. And at this point in her treatment, as I've been telling you, it's like - "Okay - I'm done now. I am ready to go back to the way it used to be..."

Will it ever be exactly the same as it used to be? My gut tells me that it won't. (Duh!) I don't see how it could given all that she - and all of us for that matter - have been through these past months.

I remember when my dad passed away in 1997 and I realized that inside, I would never be the same. These types of life experiences have a way of ripping out parts of your life as you know it. Then it mixes all that up so that when it's done with you, you have a different view of things. Not better, not worse, just decidedly different. Some would probably argue deeper. Who's to say? If the accumulation of life experiences makes life more meaningful, then we've just been given a pot full...

Looking forward to a week off from chemo and getting ready to start round 6 a week from Tuesday. If all goes according to plan, she will have her final treatment on October 16, her mom's birthday, right on schedule. Which is really saying something given the demands of the protocol, etc. Keep your fingers crossed.

xoxo

"I think I'm better..."

Okay, so Nanc has more energy and definitely more color in her cheeks but really can't enjoy it too much right now as she is currently in day 3 since her last treatment. And her last treatment being Taxol, the neuropathy has been particularly bad the last 2 days. Not so that it's debilitating like it has been in the past, but enough to sort of ruin the extra lift she got from the transfusion.

Just a quick update...

xoxo

That Was Weird...

Understand that this is all second hand. I had to work today and was not able to be there for the transfusion. However, as it was relayed to me on the way home (you figured it out - I picked Nanc up) the whole experience was a little bit overwhelming and emotional. Plus, the idea of having blood put into your system is a little creepy if you ask me. I got a little creeped out when I walked in and saw the unit of blood hanging on the hook and the red line going into her IV.

Danika's reaction on the phone when she called was "eeewwwwww..."

However, they say it's supposed to make her feel a million times better. So far, she's totally exhausted from the experience and can't tell. She tried telling me tonight about all the forms, and the risks and that they have to observe you closely for the first 15 minutes in case you have a bad reaction, etc. She didn't get too far into describing the day before she just couldn't go on. So, that's all I got.

I will let you know how she feels tomorrow. I expect at least some gardening, a couple of loads of laundry and the dishes done...

xoxo

A Transfusion?

Yup. Especially with low red blood and platelet counts. (I think I missed that point earlier today.) This kind of thing is fairly common the further you get into your treatment. They tell us that it will make her feel a million times better in terms of the fatigue. And with that, what the hell? It's certainly worth a try.

So they did a cross and type today and ordered 2 units for tomorrow which will turn her 2 hour infusion into a 6 hour extravaganza. Time to stock up on junky magazines and iced chai lattes....

This explains some of the real bad fatigue and shortness of breath. They did tell us today though that when it gets to when she can't get a breath, it's time to come in and get checked. Good to know don't you agree?

So here are some more angels - three today. First let me introduce Erin Bixby. I called her Bixby today and stopped her in her tracks. "No one has called me that since I moved here from back east," she said. I figured Bixby is way cooler than just plain Erin, and being from that neck of the woods, it seemed only natural.

Anyway, Erin is quite a nurse - one of the real calm and confident ones, super nice and finally decided to make southern California home. Put her house in Ohio on the market and is taking the plunge. And did I say cool - I mean she is an east coast girl after all!

Next we have the two hottest nurses this side of Seoul, Grace and Yoomi. Grace has taken care of Nancy a couple of times and Yoomi did the honors today. I've been chasing Grace all over the center the last couple of weeks (It's not what you're thinking!) and finally got her to let me take this shot today. But be careful with these two, they'll start speaking Korean and you won't know what they're saying. And knowing how much they like to horse around, well - be careful is all I can say!

Seriously though, I can't say enough about how great the entire staff is at the center. If it weren't for the gentle caring, the sense of humor and the knowledge and skill of these nurses, the nurses aids, the schedulers, pharmacists - the entire team - this could have been a real nightmare for Nanc. I can safely say that we will be forever grateful for the work they do and how they have helped her through this thing.

I need to get a shot of Cheryl who runs Leuchter's clinic days for him. She has gone beyond the call of duty many time recently helping me get prescriptions called in and filled, answering questions, chasing down doctors - and never gets impatient -0 no matter how busy she is. Picture to follow on my next trip over there...

xoxo

News from the Enzyme Front...

All counts are now normal, or as close to normal as they can be given all the chemo Nanc has gotten since June. So her treatment today is proceeding as scheduled and she's already about 1/3 of the way through her 15th infusion with no major pain like she had a few times previously!

15 down and 3 to go...

Updated liver enzyme scores to compare to last week's:
ALP 125
ALT 70

Cedars labs use different thresholds than what I posted yesterday. They like the ALP to be <125 and the ALT to be <53. So you can see they're a tad on the high side but certainly less of a concern as they were last week.

On another note, Nanc was asked to participate in a Quality of Life Study for ovarian cancer patients. The study is designed to help women manage the physical and emotional issues related to ovarian cancer and after-care. Not sure if she'll do it yet

It's interesting to start hearing words like after-care and remission all of a sudden. I say interesting but that doesn't do it justice. Having been through so much these past months, it's almost unbelievable to be hearing words like that.

I am not sure either of us trust them just yet though. I know Nanc doesn't for sure. It's the other foot syndrome if you know what I mean. You get so used to just trusting the present moment that anything else becomes a huge 'whatever'...

In other words, that's good news but I'll believe it when we get there. Not that she will work any less at getting better or fight any less. There is hope and there is faith. But most if that is here and now, not tomorrow, next week, next year or 5 years from now.

Does that make any sense? I hope so cause it sure makes sense to me ;-)

xoxo

Murphy's Law of Cancer Treatment

If there is a side effect to the chemo, you will get it. Or at least Nancy seems to get them all...

So the latest is that her liver enzymes are somewhat elevated. This was mentioned last Tuesday but both doctors commented on it during the week and want to take more more tests this week. Certain types of chemo will do this it seems. From www.chemocare.com:

Liver Enzymes (normal values)

Alkaline Phosphatase (ALP)	20-120 U/L
ALT	5-50 U/L
AST	7-40 U/L
Lactate Dehydrogenase (LDH, LD)	100-220 U/L

During our visit on Sunday, Deanna printed out her history since June of her ALT and ALP, 2 important enzymes that they monitor during chemo. (They can print out a history of each and every test complete with scores and a graph so you can see the history over every blood test - way cool stuff.) Her ALT started out at 75 in June and has fluctuated from a low of 10 to a high of 341. It is right now at 101.

Her ALP started out at 101 and has fluctuated between 95 and 243 which is where it's at right now. So they want to monitor it closely and we will have more to report after tomorrow.

Did I mention that tomorrow is the last of round 5? To be honest, she just isn't too excited about it for all the reasons I mentioned the last few posts. In particular, once it's over, then the waiting starts. I have to remember to remind her that she always feels better after talking to the doctors. Maybe I'll just schedule a couple of appointments a week just so they can pump her up emotionally. Could get kind of expensive though...

Tomorrow's entry from the infusion center if she lets me type...

xoxo

Leuchter was right...

...when he said that rounds 5 and 6 are the toughest of this protocol. Even with all the adjustments, the hydrations, the supplements, the injections, the medications, and on and on - it's obvious that Nanc is tired and is oh so ready to be finished. Don't get me wrong - she's not giving up or wanting to take short cuts. She's just plain exhausted from it all. I think if she ever has to look at another pill with her breakfast when this is over, she'll probably gag just having it in front of her.

Another reason I think he said that is because on the one hand you can see the end, anticipate that the treatments will be over. And on the other hand, then what? Your life is no longer consumed with all the concerns of the side effects and appointments. There's a certain letdown from it all coupled with a nagging uncertainty of what's next in your battle with the disease.

Did the chemo do its job? Will it come back?? Is that other foot going to fall??? Nanc hasn't used these exact words, but has certainly expressed the feelings.

Be here now...

On a different note, one good development recently is that the nausea has really taken a back seat. They changed her from Compazine to a patch called Scopolamine. The Compazine was making her very restless and once they took her off, the results were almost immediate. At one point a while back, even though she was tired, she just couldn't sit still. One of the side effects of the drug is a condition called akathasia. It is "an unpleasant subjective sensation of "inner" restlessness that manifests itself with an inability to sit still or remain motionless." No kidding. It was pretty intense at times.

Anyway it was definitely a good move. She's now sleeping well and I think it's made a huge difference in how well she's been doing lately.

So, Tuesday is the last of round 5. That's 15 treatments, 20 hydrations and who knows how many needles, soft boiled eggs and sherbert shakes.

Just stay in the moment....

xoxo

PS. - If I don't post for a few days, it is safe to assume that everything is pretty much unchanged since last post. I seem to have less and less to say that won't be more of the same stuff I've already told you about. I will post again Tuesday from the hospital....

"I don't want to go..."

I wouldn't either, would you? I mean who would "want" to go lay in a hospital bed for 24 hours and get pumped full of chemicals that make you feel like total crap for a week? I can't blame Nanc for having certain 'reservations' about coming today. But, here we are, nonetheless, getting the first of round 5.

I keep thinking of Pavlov's dog when trying to explain to people what dragging yourself to yet another round of chemo must be like. I think I relayed to you all that Leuchter said rounds 5 and 6 are the toughest because you just want this thing to be over. This feeling was heightened for Nanc this week because she was feeling so good all week.

So, back to the dog. Imagine if someone takes your finger and sticks it in an electrical socket, if even for a second, and then tells you that it's going to make you feel better. You might be able to take it for a while but before long, all you have to do is look at the electrical socket and you'll start to feel the electricity flow through you. You might even experience the physical effects of it. We know a woman who is now a few years out of treatment who used to throw up on her way to get her treatments just thinking about what was going to happen.

Nanc didn't get sick on her way over here today but a tear or two appeared in anticipation. Or was it my driving. Hmmmmm - I'll have to check and report back on that one...

So the chemo has started, blood work is good with the exception of her red blood cells. Anyone remember what she gets to raise red blood counts? No it's not Neupogen or Neulasta. Those are for low white cell counts. Those are high right now as a result of her last Neulasta injection 2 weeks ago but will drop rfeally low by next Tuesday.

So, anyone?? Boy, you guys have so not been paying attention......

It's Aranesp! If you guessed correctly, you win a free

xoxo

A Shift in Perspective...

It wasn't a sudden shift but it was certainly a shift. It was one of those time released attitude shifts that you just sort of notice one day. You're in the middle of a conversation and it just sort of goes a different path - one that is not familiar but one that you just know is right because it feels good. I am not talking epiphany level stuff here. Just a slow, gradual but very definite change in the way Nanc is approaching her cancer.

Some of the signs:
1. If there is a show on TV that has someone dying of cancer, it gets shut off immediately.
2. If there is a news segment on early detection or a story about somebody's fight with cancer, it gets turned up and nothing else can be said during the report.
3. She will not talk about what's occurred in the past with respect to her treatment, especially the hard days. She is just all of a sudden concentrating on staying in the present and doing what she needs to do to get through this thing.

It's been an amazing thing to witness and to be a part of. (How are you not supposed to end a sentence like that without a preposition. Hence why I always got D's in English in grade school.)

This has been a very good week physically. There is still the fatigue and neuropathy but the appetite has been very good, she's been sleeping well, walking and getting out on errands a bit as well.

Tuesday starts round 5! It's hard to believe that there is that much behind and only 2 to go...

xoxo

It's All About the Journey...

Or is it? I don't know but it sure sounded good when I wrote that to a friend in Texas who just read all this yesterday. This is what I wrote in response to her reactions on reading the blog for the first time:

"It's really all about the journey and how Nanc and I have learned to live in spite of it all. It becomes part of who you are when you're in the middle of it and if you try and deny that, I think it makes it much tougher. The people who have impressed me the most are those patients who can do that. They have a life beyond the cancer but cancer is a big part of it when you're in treatment. "

So we had a visit with Dr. Leuchter today. (That's him on the left as if you couldn't guess.) I was comparing our first visit to his office and how intense and scary it all was. Here we are, 3 months and 4 treatments later and the feeling in the room today was so much lighter but no less serious. There is such a different bond there between patient and doctor and patient and nurse having endured all that has been endured up to this point. It's the shared experience, the shared journey that is the cement of those bonds. And it's also what allows the laughter into the discussions now.

I was also thinking of how strong Nanc was today, how well she's doing this week, and how she really has become even more of a fighter and survivor of this disease....

So, round 5 next week, 5 of 6, 4 down and 2 to go. Leuchter did say today that 5 and 6 can be tough mentally because you're so ready for it all to be over. I think Nanc will do great. She is so much more prepared for all of it than she was even 3 or 4 weeks ago. I promise to keep you updated.

We also talked about the neuropathy and that it can take up to 6 or 12 months to subside. He keeps reminding Nanc that he treated a concert pianist using the same protocol and she is performing full time. He seems to think she'll have no problem with the keyboard.

We also got to see Jen - Dr. Lang who dropped in half way through the appointment. It was really nice to see her as we hadn't seen her in a few weeks. Nanc was recounting that horrible weekend around the holiday a few weeks back. She got a few sentences in and started tearing up just thinking about it and didn't want to talk about it anymore. It's done now and we are moving forward...

xoxo

Not too bad actually...

Really, considering how last weekend was, this past weekend was a breeze - that chemo relativity theory again. I say a breeze but as usual, Nanc has a slightly different slant on things - duh.

We actually went out and did a bunch of errands yesterday. Of course she was totally wiped out by the time we got back but she did it. Her biggest concerns these days are the neuropathy (will it be permanent, how much, when will it go away, will it go away, etc.) and the fatigue. She describes the feeling in her fingers and feet like a tingling but painful and the fatigue like you are so tired you can't breathe.

I love it though when she asks, "Why do I feel this way?"

Well let me think honey. You have cancer, you've had four rounds of a very tough protocol of chemical therapy that would debilitate most people. So - gee - I don't know. What do you think it could be?

I will admit that the neuropathy can be pretty consuming and painful. She's been taking neurontin for about a week but it takes up to 2 weeks to have any real effect. So in the meantime, you just have to grin and bear it. We did find out though that if you extend the IV taxol, it lessens that side effect. We will be discussing stretching out that treatment to 12 hours or so instead of 2 for the last 2 rounds. I know. I just said "the last 2 rounds...."

So, all in all, not too bad the past couple of days. Today is day 6 since her last treatment and we could be looking at a fairly decent week maybe. I will keep you posted.

xoxo

4 Down, 2 To Go...

or Not Too Bad Actually...
or Two Thirds Done!
or Like Night and Day
or At Least I'm Not as Sick as That Guy
or How to Waste 6 Good Titles on One Post...

Lots of good stuff to report so where to start is the problem. The last few days are a total 180 from Saturday and Sunday. The pain just sort of lifted, a bit of an appetite returned and a lightness that had been missing reappeared (in my opinion as a result of hearing the CA125 test results.) Nanc even admitted again tonight that even with the side effects, it's like a no-brainer - just finish the protocol. Seriously, how can you argue with those results?

Four down and 2 to go -or- 12 infusions down and 6 to go. We were talking last night - actually I was talking and she was crying because she has trouble seeing the light at the end of the tunnel sometimes. She admitted that she'll see more light at the end of round 5. It's kind of tough arguing with the person going through the treatments if you know what I mean.

So my sister Candy was here for the last 6 days and was such a huge help that we tried talking her into staying. I mean who really wants to do their own dishes and shopping and laundry - even the dogs got used to having her around. And oh yeah - the homemade pound cake wasn't too bad either. It has become a breakfast staple - just spread a little butter and toast in a warm pan. Serve it with a 7 minute egg, some fresh peach and voila! Nancy's breakfast - served daily from 7:30 am until 11:00 am - 8:00 am until noon on weekends...

About the guy mentioned in title 5 above. They wheeled him into the infusion center just as we were leaving Wednesday afternoon. It looked as if he had just come from radiation therapy and was having trouble sitting up straight. And was he sick. I mean I haven't heard retching like that since my last nightmare before Nanc's treatments started. I was hearing it and feeling it all day Thursday. And the nurses were a little upset that he hadn't been taken care of before they transported him to the infusion center. The guy was sick, alone, cold - it was every nightmare you hear about cancer treatment. Quite a brutal reminder of how bad it can get sometimes. All things considered, it could be a lot worse...

xoxo

Chemo after all...

So here we are, back at Cedars, getting the last of round 4. How did that happen after such a horrible couple of days that left Nancy swearing she wouldn't get another drop of the stuff if it was going to be anything like the last few days? How in the world did she agree to move forward with the Taxol after experiencing such painful neuropathy and myalgia. you ask? I mean the neuropathy is bad enough but couple it with the muscle pain from the myalgia and you've got one hell of a way to spend a weekend...

So to answer that question, right when we pull into the parking lot this morning, we run into Erin, one of Nancy's angel nurses who walked her down into the treatment area. At one point, Nanc looked at me and said there was no way she was going in until she talked to the doctor about the last couple of days. She even cried getting into the elevator just in anticipation of what lay ahead for the day. And that's when Erin stepped in and took over while I went down the hall to try and find Dr. Leuchter. And she was just on her way into work for the day. Serendipity steps in to save the day once again...

Cheryl from Leuchter's office came over and talked with Nanc along with Deanne, a nurse who has worked here for over 7 years now - more on her later. The argument to continue or not was discussed at length. The option to change from the Taxol is a very real option but - and this is a huge but - her CA-125, the marker test for ovarian cancer, is now down to 3 with her treatments so far! It was over 4,000 before the surgery!!! Single digit results are what you want and you just can't ignore that kind of result when you're thinking about dropping a protocol. She has come too far in terms of her progress as indicated by the test results that any decision to change course should be considered very carefully. This is not a decision you make lightly...

AS the nurses explained, you only get one shot at a first round battling cancer and you just have to go through some stuff as it were if you are going to make it stick. Given those results, Nancy looked at Cheryl, Deanna, Candy and me and said, "Well I guess I'm going ahead with this today."

Looks like it honey...

So the plan is to move forward and re-adjust what we are doing for the side effects with the pain management team. It's getting a bit more complicated by the day and my spread sheet is getting longer for sure, but again, you just can't ignore results like that.

So it's about 2:00 and she's sleeping through today's treatment. I think her battle with the weekend took its toll and she's sleeping it off. That plus the benadryl. She did have a moment or two before falling asleep - those moments when it seems that her life is a dream and she can't believe she has cancer. "Is this really happening to me?" They still pop up once in a while even after 4 months.

Okay - nurse Deanna. Very, very pushy but in the best way possible if that makes any sense. Like I said, she's been doing this for over 7 years, is a mother of 2 and has no problem explaining how to properly insert a suppository. She was one step ahead of Nanc the entire morning and helped her relax in so many different ways. She just knows what she's doing and doesn't mess around one bit. So the pushy thing is just another way of saying that she knows what she's doing and don't stand in her way, really!

xoxo

New favorite song

This Goo Goo Dolls song speaks so much of the kind of hope Nanc and I talk about so much these days, that I thought I'd share the lyrics with you. We could all use a little extra hope these days. Click here to see the video....

Better Days

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cuz I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

And it's someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we're alive
And the one poor child that saved this world
And there's 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again
Cuz tonight's the night the world begins again

xoxo

It's Been a Rough Couple of Days

It's really been tough the last three days for Nanc. The neuropathy seems to have rocketed to a whole new level. So much so that we called the center today and talked with the Dr. on call. He prescribed Neurontin for the pain.

Did I not mention that it's very painful? And then, to top it all off, she is schedule for a treatment tomorrow and has had a zero break this time around. So, we have a call into Leuchter's office for an evaluation before we start the chemo tomorrow. The nurse we talked with today said it's not unusual to postpone due to problems like this. I don't want to imagine what pouring more Taxol into her tummy would do to her condition. Ouch...

Nanc is threatening to go on strike if it doesn't get any better.

My oldest sister Candy has been here since Saturday and has been a huge help with cooking, cleaning, dishes, walking the dogs, etc., etc., etc. She gets grilled skirt steak and fresh white corn on the cob for dinner tonight, just for the asking.

That's about all the news that's fit to print. It's cooled down today to 107. A break from yesterday's 108...

I'll bring you updates on the chemo, etc. tomorrow.

xoxo