All I want for Christmas...

...is a full head of hair! But we are making progress!!!! Check it out...














Wishing everyone a very Merry Christmas and a healthy New Year. We have much to be grateful for. Let's not mess it up...

xoxo

5:00 Shadow

That's about the most fitting description of Nancy's hair right now. Traditionally, "a five o'clock shadow is beard growth visible late in the day on a man whose face was clean-shaven in the morning. The term comes from the traditional nine-to-five workday hours."

So maybe this would be better termed a "6 month shadow." Whatever we decide to call it, the good news is that it is real hair, very short, very soft but hair nonetheless. She is certainly making progress in that area. I am trying to get a picture posted here but that may be a bit tough. She's very protective on certain things....

Not much else to report. The neuropathy is still as bad as ever and we met with the pain team yesterday. They are going to try a different approach as the Lyrica doesn't seem to be doing much. So we'll give this new approach a month and see if she gets any relief.

During our visit to Cedars yesterday, we always like to stop by the infusion center to see the nurses. They like it when patients stop by so they can see them when they are mending as well. It does their hearts a lot of good to see the positive results sometimes.

Yesterday we ran into someone at the infusion center that I have seen around here and there. We sort of looked at each other like I know I know you. Once we got past the obligatory pleasantries, Nanc and I found out that his wife is back for her second round. Not second round as in second round of her current treatment. She's back for her first treatment of her second time around, as in her cancer has come back.

Nanc doesn't like talking about it but it is a realty. My heart just about broke watching them as she was going to get weighed in, knowing what was in store. You could sense the dread in her steps.

Once she heard that, we were out of there in a flash.

xoxo

So why so few posts lately?

I'm not sure if it's out of guilt or not, but I feel like I owe everyone an explanation as to why the frequency of the posts has slowed considerably since Nanc's treatments were done. You may not feel like you need one but I feel like I need to give you one anyway...

In a nutshell, it's because it's all about the recovery process now and like I told you last time - it's similar to watching grass grow. To say that Nanc gets frustrated with her progress would be an understatement...

So - rather than run the risk of being majorly redundant, I am waiting until we have some real news to report. That plus I am trying to get caught up at work...

xoxo

It's Official - We have Peach Fuzz!

I verified that fact last night. And it didn't require a magnifying glass either ;-)

It's coming in very evenly, very light in color right now and peach fuzz is just about the best phrase to describe how it feels. Her eyebrows are beginning to come back and a few small eyelashes were spotted as well making their appearance. You could almost hear Stravinskiy's Rite of Spring in the background....

And Erin Carr - thanks for posting a couple of weeks ago. It's good to know you're doing well. Erin was one of Nancy's angels at Cedars who is now doing a stint at John's Hopkins. Click here to see her picture in case you don't remember her.

I really which that there was more to report after such a long absence but this part of her recovery is like watching grass grow sometimes. Each day seems to bring very small advances overall. she is still experiencing pretty bad neuropathy and fatigue. It's funny how you get used to taking 2 hours to just eat and shower in the morning but that's what it's like these days. With little or no feeling in her hands, be careful if you sit next to her while she's eating. You just never know when her fork might just fall out of her hand. We are staying away from soup for the time being.

So, that's all the news that's fit to print. Say a prayer if you think of it for all cancer patients who may be struggling with their disease...

xoxo

One Small Step for Nancy...

...one giant leap for her recovery. (I don't know. Maybe a bit corny. Maybe change it later before you publish it.)

So on my way home, in the middle of what seems to be coming a regular 90+ minute commute and an endless stream of Springsteen on my iPod, Nanc reported feeling "peppy." Now that's a new one. I can't remember her ever using the word peppy before. But hey, I am certainly not going to argue over the word choice. I'm tickled pink that she's "peppy." That means she's making progress.

You can hear it in her voice.

So, it may be a little thing, but it's pretty huge if you think about it a bit and put it into perspective over the last 5 months. She certainly wasn't feeling any too peppy back in the middle of July...

xoxo

A New Normal

I know, I know, it's been a while. Consider it a good thing, generally speaking. For me, I have been trying like mad to get caught up at work so I have not had too much time to sit and type. For Nanc, she thinks she should be feeling better by now at 4 weeks since her last treatment.

So what about this "new normal" thing? I heard it said that living with cancer, no matter where you are with it in terms of your treatment, your recovery, your whatever, you have to get used to the devil sitting on your shoulder - you have to make friends with it...

I'll let that sink in for a minute - I had to think about it for a while when I first heard it.

Right now, Nancy's biggest battle is with the fatigue and the neuropathy. So what exactly is peripheral neuropathy?

"Peripheral neuropathy describes damage to the peripheral nervous system, the vast communications network that transmits information from the brain and spinal cord (the central nervous system) to every other part of the body. Peripheral nerves also send sensory information back to the brain and spinal cord, such as a message that the feet are cold or a finger is burned. Damage to the peripheral nervous system interferes with these vital connections. Like static on a telephone line, peripheral neuropathy distorts and sometimes interrupts messages between the brain and the rest of the body.

"Because every peripheral nerve has a highly specialized function in a specific part of the body, a wide array of symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness."

I think I've mentioned a couple of times before that Nanc has been experiencing this for quite some time. Sometimes she can't even pet the dogs because it feels so weird. The difference is that now it seems to have rocketed to some new dimension that makes it difficult to button shirts, put on a necklace or stand in one place without wobbling. Try walking without any feeling in your toes sometime...

That pretty much describes it. They can't predict when chemo therapy induced neuropathy will reverse itself. the time it takes varies widely from one person to another. So we've been in touch with the pain team in terms of the medication for it and we just doubled her dosage and will see how that goes for now.

And colder weather has a way of magnifying it quite a bit. Sunday was a chilly day by LA standards - maybe 60 - and she was in quite a bit of pain versus a day like today at 85 or so.

And the fatigue. I am almost jealous how she can sleep 12 hours at a clip. I haven't done that since staying up for 2 days straight many, many years ago. But each day lately, it seems to get just a tad better.

So anyway, we had an appointment at Cedars today for her first port flush. You need to access and flush the port so so it doesn't get clogged up. Kind of like an oil change which needs to get done once a month. We stopped by the infusion center and said hi to a few of the nurses. They all commented on how good she looked. So, no matter how she feels, the experts say she is looking very good....

I happen to agree with them.

xoxo

Hair Debate Rages On...

Not that I want to down play the fact that things are changing - don't get me wrong. But Nanc and I seem to completely disagree on exactly how much hair has come back so far. One thing we can certainly agree on however, is the fact that the going is definitely slow. Today is day 19 since her last treatment and the longest she has gone since June without an infusion. So, one would expect things to change, even if just a little.

However, I am just not sensing the same hair growth that Nanc is saying that she feels. Now I am just as much an idealist as the next person and I have admitted that it is softer than it has been since she shaved it. But, (and I know she would tell you differently, but once again I have the keyboard,) it's awfully hard to see...

Hair debate aside, the neuropathy lingers with some small changes. Last night she mentioned that her hands felt better but the feet still hurt quite a bit. That makes her unsteady on her feet and leaves her legs weak. She got down on a knee in the pharmacy the other day and collapsed to both knees and had a hard time getting up. Sure makes shopping a real adventure...

She's been complaining of some pain in her abdomen which from her description is the peritoneal area where they dumped all that chemo - 12 treatments but who's counting? We will watch that closely over the next couple of days and see if it continues. Ipubrofen seems to help - Aleve doesn't touch it.

Anyone want a nearly full bottle of Aleve, cheap??

xoxo

Is that hair I see?

Or more to the point, that Nancy feels. "Here, come feel my peach fuzz..." It's a big deal really! Hair growing on her head for the first time since June...

Today was about the best day emotionally in a while. It has been hard, even harder than we thought it was going to be. It's hard to remember that there is a certain period of detoxification that has to take place and that alone can make a person feel very out of sorts - not to mention make you want to climb out of your skin! Felicia from the pain team told her to go easier on herself and to give it time. Try to remember what you've just been through and don't expect quick improvement. Chemo therapy just isn't that way....

There was some joking around tonight which felt really good. Even if I was the target tonight - who cares. To hear her laugh was a relief given what the past couple of weeks have been like emotionally. So I'll take it any way I can get it.

I am happy to report that the Springsteen concert last night at the LA Sports Arena was, well, electrifying as always. Old school audience pushing for the old stuff but he did a lot of the new stuff and I prefer it live to be honest. The song list really highlighted things like truth and honesty, integrity, broken dreams and love - always love. Next time around, I'm doing both nights - or better yet - do the opening night in Asbury Park!

Today would have been day one of round 7. If I was a betting man, I would give you even odds that by this time in a couple of weeks, we will begin to see marked improvement in the neuropathy. But heck, I'm just a cook...

xoxo

Blinders needed...

blind·er (blndr)

n.

1. blinders A pair of leather flaps attached to a horse's bridle to curtail side vision. Also called blinkers.

2. Something that serves to obscure clear perception and discernment.
3. Following Dr. Leuchter's advice to look straight ahead. Do not look to either side. Let him worry about the cancer and you move straight ahead and live your life.

So much easier said than done - but necessary nonetheless.

That is the short version of our visit with Dr. Leuchter yesterday. The long version was Nancy telling him that she didn't like the 70/30 odds and him telling her not to think about chances or odds or anything but getting better. We re-adjusted all her medications, cut out 5 or 6 things now that chemo is over, kept a few and made appointments for a scan and a port flushing.

Her catheter port needs to be flushed monthly and fresh heparin added to keep it from getting clogged up. We will have to get this done monthly for as long as the port is left in. And you will remember that they like to leave it in as long as possible, just in case...

Some people have these things for years from what I understand. It certainly makes infusions and blood draws easier that's for sure. We found out that they will plan blood tests from now on to coincide with the flushing so she only has to get stuck once.

So, we wait and see what happens with the neuropathy, wait for the hair to grow back and try to keep up with all the new TV shows. I much prefer those options to what we were looking at just a couple of weeks ago...

xoxo

Next!!!???

Good question and I'm glad you asked....

So, the last treatment is now but a not too distant memory and Nanc is left "holding the bag" as it were. They told her early on that if it became difficult to button her blouse or jeans, that would be the point they would stop the Taxol and move her to a straight IV protocol. Well guess what, that came about this weekend. Damn if they didn't know just how much to dump into her system at just the right time.

So, phase 2 is now officially about getting her put back together so she stops dropping everything and can be trusted with carrying anything breakable across the kitchen. And driving. Nanc tried driving on Friday and nearly rear-ended somebody. We are in search of a pair of shoes that will not make her feet hurt so much but will allow at least enough feeling so she can tell the gas pedal from the brake pedal...

Our next appointment is with Leuchter this Wednesday to discuss exactly what we do next. They will definitely be taking some blood as her platelets were so low last week. It they are not up to a decent level, she will have to have a platelet transfusion.

Based on the topics of a lot of our discussions lately, I have a feeling that our lives will become much simpler in the months to come. We have been discussing making a few changes based on some "shifting" priorities. One of them will more than likely involve getting into a smaller house. It's at the discussion stage right now but the idea of a smaller mortgage sure looks attractive...

Stay tuned....

xoxo

So what is a platelet anyway?

Or why would we have to ask that question in the first place?

10:15 am
Arrived a little late this morning but made it just the same. There was some anxiety, a few tears, but we got the day going, port accessed and took blood. They always test before proceeding with chemo. Results today show good white and red cell counts but very low platelets. We can't proceed until we get the rest of the results back and talk to the Dr. So far in her treatment, it's about the only side effect of the chemo that hadn't shown up so far. I guess it was waiting for just the right moment and then take center stage right when we had everything else in order...

So, what is a platelet? From wikipedia:

"Platelets or thrombocytes are the cell fragments circulating in the blood that are involved in the cellular mechanisms of primary hemostasis leading to the formation of blood clots. Dysfunction or low levels of platelets predisposes to bleeding, while high levels, although usually asymptomatic, may increase the risk of thrombosis. An abnormality or disease of the platelets is called a thrombocytopathy."

"A normal platelet count in a healthy person is between 150,000 and 400,000 per mm³ of blood (150–400 x 10⁹/L). 95% of healthy people will have platelet counts in this range. Some will have statistically abnormal platelet counts while having no abnormality, although the likelihood increases if the platelet count is either very low or very high."

Nancy's count was 75,000 this morning. Chemotherapy is famous for having this effect. So we sit and wait....

10:40 am
It's a go. A normal count for chemo patients is 100,000 we were told, so Nanc's 75k is not so bad that we have to delay. Grace started her pre-meds and should start the chemo by noon or so. They will however monitor the count in a week and depending on the result, may or may not have to order a platelet transfusion.

One of the more difficult things that some cancer patients have to deal with is the emotional fallout of having a life threatening illness hanging over their head. It is a challenge some days to stay positive when there's so much negative in the news, on TV, etc.

And someone explain this one to me please - why do people always want to share their nightmare stories with you when you are going through a life changing experience like this? It happened when Nanc got pregnant the first time. "I remember my first pregnancy. It was a total nightmare! I gained 75 pounds, had a 72 hour labor and then they wound up doing a c-section..."

It is so important to stay present and positive - I can't even begin to tell you how much...

12:05 pm
IP port accessed and Paclitaxel is on its way. Nanc rests while I try and get some work done.

1:30 pm
Chemo almost done. Should be drained by about 2:00 is my guess. I got a buck that says 1:55.

2:05 pm
Damn - missed it by 10. Oh well, so much for my gambling... BUT - that's 18 in the bank ladies and gentlemen!

2:15 pm Half of an egg salad sandwich and a few Sun Chips for lunch, 500ml of hydration more and we get to go home.

3:30
Said our good-byes. Lots of hugs and encouragement for Nanc from the nurses. On the way home she did admit that a weight was lifted today but not until we walked out the door. I don't think she appreciates the magnitude of what she just finished. Is the right word accomplished? It could be. She came through a very, very tough protocol, still standing. Not steady all the time, but standing and willing to help the next woman in line. Don't anyone ever let tell you she's not tough....

I didn't get a picture of everyone stuffing their faces today but the sure did enjoy the cupcakes. I offered one to the nutritionist and wish I had a picture of her reaction. She's a vegan...

6:00 pm
Nanc is resting and Atley and I are watching the news and getting dinner ready. It would almost seem like a normal night if it weren't for what has gone on for the last 5 months and what will be with us for a very long time. The trick is to not let the cancer run your life. And just like that, we now have to go about the business of living life...

xoxo

Chemoed Out

Or is it chemo'd out? Whichever way you want to spell it, it is the one word that best describes how Nancy has been feeling the last couple of days. General fatigue still, (hell - she slept 14 hours Friday night!) and all the rest of the usual side effects all rolled up into that general feeling that she summed up as "chemoed out." And those are her own words by the way...

Back at Cedars Saturday for the last hydration of the week. Last chemo this coming Tuesday, 2 hydrations on Wednesday and Thursday and that will bring this protocol to an end ladies and gentlemen.

More to come on that later. I was thinking today about the future of this blog once treatment ends next week. I will for sure post updates on scans and blood tests. I am hoping Nanc will post once in a while as well. It has certainly been a huge help in keeping everyone updated and saved us countless phone calls these last 5 months. I am looking forward to getting back to some sort of "regular life" - whatever that may be post-chemo. I can't say "post cancer" for at least 3 years I am told. I have also heard some mention that you're not officially cancer free for 5 to 10 years. We're going with Leuchter's time line of 3 years.

It's going to be interesting to see what effect all of this has on how we live our lives in the months and years to come. Maybe I'll start writing about that. On second thought, how boring. It will remain Nancy's cancer blog and all that it entails, pre, post, in the middle - whatever...

All that aside, I am finding it hard to believe that we are at the end of this phase. It seemed at times like it would never end, that there was no way she was gong to get through it. Hell, 5 months later, we are both still finding it hard to believe that all of this happened in the first place!

More updates to come from the infusion center on Tuesday with a picture or 2 of the staff and their cupcakes. We are taking cupcakes to say thank you. It's a very small way of trying to say thank you for such a huge help they all have been. I can't imagine what it would have been like if she had gone anywhere else...

xoxo

I Lost the Title

Somewhere on the ride home. I had it but it flew out the window somewhere between downtown and when I stopped to get gas. And it was a perfect lead in for what went on the last few days. I am going to have to start writing this stuff down....

Anyway, 'whoa' is a word that seems appropriate. Fatigue - big time. The cumulative effect of all that chemo seems to have kicked in and has had Nanc down for the count yesterday and today. Even her last overnight stay and the two treatments took more out of her than it has before. She also complained tonight of some nausea which hasn't happened since I don't know when. Complain isn't quite the right word - maybe 'mentioned' is a better way to describe it. Yeah - she 'mentioned' in passing that she felt like crap...

However, you can now count the remaining appointments on one hand. Of course that doesn't mean squat to her when she's feeling like this. But we know it will pass eventually.

Say hi to nurse Cheryl. Cheryl pretty much runs things over in the clinic area for Leuchter. I think I mentioned before that if I am having trouble with getting a prescription filled or with and appointment time, Cheryl knows how to get things done! She always has a big smile and hugs for her patients.

Right after I took this shot, at least three other nurses came by and wanted a piece of the action. It's amazing the sense of humor in the face of all that disease. I guess you have to have it else you'd go crazy working around it all the time. I know I would. Hell a good cancer joke now and then lightens up the heaviness! Did you hear the one about....

xoxo

On Your Mark...

Get set...

GO!

And she's off.

Round 6 started this afternoon and will finish up next Tuesday. What more can be said about that?

Well now that you mention it, I will say one thing. There is just no way that Nanc could have gotten through this without each and every one of you. That includes the meals, the rides, the calls, the cards, the encouragement, the prayers, the laughter and the hugs, the advice, the tips, the commitment to care, the quiet confidence, the quiet visits, the quiet thoughts, the sure hands, the warm smiles, the concern, the love... So how do we ever begin to give some of that back? Well, it started today.

We have a friend who recently found out that he has squamous cell cancer. It is a form of skin cancer that got into one of his lymph nodes. They got all the cancer during surgery but don't know the source. So he will be undergoing radiation and chemo for 7 weeks starting in about 2 weeks.

So, we gave him and his wife a tour of the cancer center today and introduced them to a few of the nurses. I think it helped break the ice for them and gave them some hope. I remember how desperate you can feel when you are first given the news and how muck like a deer in the headlights you feel like when you have to come into a place like this for the first time. I think they left with a little less fear of the whole process before he has to start.

So that's how we are going to start giving something back. Nanc said today on the way into her treatment that she is ready to start reaching out to some women who are having a hard time. She wasn't ready up until now as she was just trying to get through her own hard time.

And once Nanc puts her mind to something, well you know...

xoxo

Untitled

I was trying to think of what to title the post that introduces Nanc's last round of treatment and this was the best I could do. So much has been said, so much has happened and so much water has passed under the bridge that the best I can do is just say that we will all be relieved when this is over....

So tomorrow at 4 starts round 6. We are officially no longer the newcomers. Just so looking forward to the end.

I will bring you all updates as the treatments progress over the next 8 days. And I have to remember to get a picture of Cheryl!

xoxo

A Visit with Leuchter - What Now??

So, with only one treatment left, what's next? That's what was discussed with Dr. Leuchter yesterday at our between treatment appointment. After all, next week starts round 6 and then Nanc's last chemo treatment is scheduled for October 16. Cheryl calls it "Graduation Day." (I keep forgetting to get her picture. I have found that if I really need to get something done - Cheryl is the one to call. And she always does it with a smile...)

Okay - so here's the deal as laid out by Dr. Leuchter yesterday. They will monitor Nanc after the chemo is done with scans, blood tests, etc. First at 2 or 3 months and then periodically for 3 years.

Here is where the oncologists are so sneaky - they tell you just enough to get you through each phase of the disease. When she was first told she had a growth they said, "Oh it's probably nothing. We'll go in, take a look, it's more than likely benign." Then when they confirm it's cancer, they admit they had a suspicion, probably even knew it was cancer, but again, they tell you just enough so you can survive each phase.

So then they told her that she has an excellent prognosis for a complete cure based on the surgery and the chemo protocol. No problem - that hope certainly got her through the last 4 months of hell. What they didn't tell her is that there is also a 30% chance that it will come back. Of course they wait until the end to tell you this stuff and I get why they do it that way. There is just no way she would have put up with half the crap she put up with these past months if she had an inkling that there is a 30% chance it'll come back.

So, will the glass be half empty or half full? Last night it was half empty for minute or two. I know it's weighing heavy on her mind right now. It still hasn't fully sunk in for me yet. So I'm still in the full recovery mode and hoping I don't hear echoes of that other shoe coming my way...

One would think - just think positive, right? It's not that simple or easy to do all the time. Those uncertainties are going to creep in and take over sometimes. The good news is that this course of treatment is almost done and she is doing very well all things considered. Once again it comes down to staying in the moment - all is good right here, right now and we have much for which we can be grateful...

xoxo

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

They're back......

The side effects. Mostly the fatigue and nausea today. But they are back. So it's down into that hole again for a couple of days. I still find it hard to believe that there is no other way to kill the cancer other than almost killing the patient in the process. Makes me wonder if I am doing enough as an individual to support the research.

Without further adieu, let me introduce Nurse Erin. Erin is what one might call, well cool is about the best word that I can think of to describe her demeanor. She is a no BS angel, but oh so good at what she does. Her contract is up at Cedars in a couple of weeks. After that, she's off to John's Hopkins do0ing the same kind of work in the cancer unit there.

Erin is I think what hey call a contract nurse. She travels from state to state and is working her way through as many as she can, while she can. So I asked her why one day. "I'm from Missouri" sje said.

'Nuff said. (It could have been Iowa, but to me, either one is reason enough to leave...) ;-)

We tried talking her into staying but she's got that need to see what the rest of the country has to offer. Nanc and I both think the world of this team of nurses. We will miss them when this is all said and done. I guess we'll just have to have them all over for Sunday dinner once in a while to catch up...

In case we don't see you Erin, good luck and thanks for being so kind and helpful to Nanc. We will miss you and hope you keep us updated on your travels...

xoxo

"If it weren't for an excellent prognosis...

...I don't think I would continue with the chemo treatments." It seems to keep coming up. This is hard stuff. And I can totally understand sitting next to her, watching as she goes through this, it would make total sense if it weren't for the excellent prognosis. We were talking about that young boy we saw yesterday and hoping he too had a good prognosis given what he has to go through.

Anyway, today's treatments are going well and quicker than we had anticipated. So we will get home early today. Which is always a bonus considering all the things that could make the stay longer than it really has to be. Hence why we always pray for good blood counts and a high output of fluids.

Nanc got to chat with 2 other women today with the same cancer. One I think I told you about is Virginia. We see Gini see around campus on occasion. Nanc has talked with her before a couple of times and they swap war stories though Virginia has had a different experience with the same exact treatment as Nanc's. She's lost her hair and suffers some neuropathy but not the same issues with food. Today was her last treatment so we were able to trade some high fives, some hugs and made some plans to check in with each other in a few weeks.

The second lady, well that was my fault. Me and my big mouth...

I was walking through the center and this woman came out from one of the rooms through the curtain and we nearly collided. She sort of freaked as she thought I was taken aback by her hair. I told her that I am quite used to it by now as I have been living with a bald wife for some time now. We both smiled and she demanded to meet her. So she immediately came over to Nanc's room, sat down and started chatting it up for a few minutes until her nurse came looking for her. She was admiring Nancy's head - she doesn't like the shape of her own head but was quite impressed with Nanc's .

It seems we made everyone late this morning but the women had a nice morning chatting before they had to retreat to their rooms to get hooked up. We got her name and number and Nanc promises she'll call her when she's up to it. I hope she does. She always feels better around women going through the same thing.

Oh yeah, her name is Jan. It was tough seeing the three of them so up and cheerful early in the morning and then to see the immediate effect of the chemo by 1 in the afternoon...

Our next angel hails from Motor City if I remember correctly. Meet Karen, who was Nancy's nurse on her first day of treatment. I think I told you a little about her before so now you can put a face to the name. I can picture her in patched jeans, cotton peasant shirt and sandals in 1969 doing what we all did back then. she may totally disagree with my impression but too bad - I'm writing.

She still carries a little of the times with her in her compassion and caring. She really makes Nanc comfortable in a motherly kind of way. She's alway ready with a remedy or trick to help with the side effects or just to make her feel at ease.

At the end of the IP treatments, you have to sort of roll around to get all the chemicals distributed in the abdomen. We had a little fun with that today. I don't think we would have attempted joking around like that 6 weeks ago. It's a testament I think to the fact that 95% of life is just showing up....

xoxo

Correction, It's not the chemo that sucks...

...it's the cancer that sucks. It's an indiscriminate, equal opportunity killer. I saw it again today in a 5 year old losing his hair. We all know that the chemo is necessary so that he'll get to see a bunch more birthdays and Nancy gets to see 60. (Did I just say 60?!!!) It's just that the fatigue, and the pain, and the hair loss are necessary to rid your body of the cancer. And it has an effect on so many innocent bystanders. "Peripheral damage" is the term I think they use in military speak. It just has such a ripple effect though people's lives that I never realized before. And not just because of what is happening to Nancy. It's when I see kids and others in the Cancer Center and see the relatives, and the parents, and the children, and the friends, etc., etc., etc.

So, from now on chemo does not suck, cancer sucks. Everybody now, "Cancer Sucks!." (That was so Country Joe McDonald.)

So here we sit, one more round of chemo, the benadryl has kicked in and Nanc has dozed off and will remain so for at least 6 hours. She'll sleep through her IV Taxol, a liter of hydration with electrolytes and wake up all bright-eyed and bushy-tailed for her IP Cisplatin. (Right...)

The fact that they are going ahead with her treatment is good news though. Her blood counts were not too bad. Her electrolytes were good thanks to the daily potassium and magnesium. Her white cells were really high due to her Neulasta injections last round and nothing to worry about we were told. The chemo will take care of that in short order. But her red cells are a tad low so she'll be getting a shot of Aranesp this time around.

Meet Elinor, Nancy's nurse today and our latest addition to the official list of Nancy's Angels. Elinor has been in Nanc's corner a time or two in the past and each time has impressed me as a total no-nonsense type who enjoys Chinese food and 3 day weekends. You do not want to tangle with her on any issue. I do not speak from experience, it's just a hunch. Forewarned is forearmed...

On another note, to say that the last couple of days have been hard would be like saying that having your best friend move 3000 miles away is an easy thing, cause that's pretty much what happened Sunday. Danika has been a real help to Nancy with the work stuff yes, but mostly on an emotional and spiritual level. You just can't hang out and watch the entire season 1 of House with just anybody.

So Atley, get ready to watch some corny TV and run tons of errands when you get back from NY. And Cathy, we are all hoping that Eddie continues to get better. (For those of you who don't know Cathy and Eddie, you can just skip that last line.)

xoxo

Congratulations, Good Luck and Happy Birthday!

All in one party, yesterday...

Just in case you didn't make it, the yard looked great, the weather cooperated nicely as it wasn't too hot - we actually had some real weather come to think of it. It drizzled a little bit and there were some clouds all afternoon. Oh yeah, and the cupcakes. Oh the cupcakes...

We celebrated Danika's graduation finally and to send her off to grad school. Her plane leaves at 9 tonight as a matter of fact. We also snuck in a happy birthday for Nancy as she turned 54 yesterday. It turned out to be quite a nice day and a good time was had by all...

Our little girl is off to graduate school! She will be missed a lot as Nanc really came to rely on her this summer both for business and because the girl has such a big heart. Atley moves in this week to help out for the next couple of months so that will be a huge relief.

I know he's awfully white for being a southern California boy but what's a parent to do? ;-)

So this leaves us with the hard reality that round 4 starts Tuesday afternoon. I am a little worried about her energy level lately. She did much better last round at this time and is really fatigued most of the time.

The symptoms could indicate low electrolytes, low white and red blood counts, etc. When we visited Leuchter last week, he didn't seem to think a blood test was in order. I hope she's in good shape next week and they don't have to put off her treatment. That would definitely suck. She reallywants to get this thing over with. We had a moment tonight after dropping Danika at the airport. There were tears and frustration over 3 more rounds of chemo and the fatigue and the hospital visits, and on and on and on. It is so hard to stay in the moment sometimes when you feel like that, especially with your daughter moving 3,000 miles away.

I will try and bring you more frequent updates the next couple of weeks. And I really need to take more pictures of the nurses and doctors. Not just to post here but I really want more of a record of this thing. I think it might help someone else someday if they ever have to go through what Nanc is going through right now if they see that she made it even though it was tough.

And she will make it. Even if it is tough. And we know why....

xoxo

The Inking of Round 4

It's hard to believe that we scheduled round four today. We visited with Dr. Leuchter and he was his usual nonchalant self, calm and reassuring. We talked a bit about the neuropathy, how long it takes to dissipate after chemo, the chances of permanent damage, etc.

And as is the case with cancer treatments, it's different for every individual. He told us of a piano player who had 6 treatments of taxol and 3 more of another similar type of chemo who is playing piano after all her treatments. And she had a lot more than Nanc will. That's the encouraging part of the discussion...

We talked about the lack of appetite and he said she'll gain her weight back, not to worry about that. It might take 4 to 6 months but her appetite will return.

I know we talked about more but it all seemed like a dream today. It's almost getting to be too routine if that makes any sense. Like we are now veterans of this fight and have been numbed somewhat to the environment at the hospital. Who would have thunk it??

I will share a moment with you that happened tonight that will give you an idea of the effect all of this can have on Nanc at times. She was laying on the couch with Danika as I was making dinner and Dani called for kleenex - "She's crying." So I brought kleenex and sure enough, she was crying.

"I just don't want to be me right now." She said she just wanted 30 minutes when she didn't feel like a cancer patient...

I wish there was some magic pill or something but we all know the answer to that one. I will hearken back to the acceptance quote from the other day. It's truly one day at a time, one hour at a time, one minute at a time. And here we are, half way through...

I know there's more but I am tired and need to get to bed. I just wanted to bring you current and let you all know we appreciate the prayers, the calls, the help and the love. You are all part of her fight and she wouldn't be able to make it through without that knowledge. So big hugs and kisses all around.

xoxo

Acceptance

So, it's been 5 days since I last reported any news and I don't know if that's a good thing or a bad thing. But it is a 'thing' nonetheless.

So, how is Nancy doing? That depends on who you ask and when you ask. If you ask me or one of the kids, we will tell you that she is doing quite well the last couple of days. I won't deny that the last IP Taxol treatment hasn't been tough on her, because it has. She's been in some pain and discomfort from the neuropathy and the general, overall horrible feeling from the cumulative effect of all the treatments.

It gets a little old and tiring on her. She admitted tonight that if she didn't have an excellent prognosis she probably wouldn't want to go through what she's gone through this past week any longer. And I can't say I blame her either to be honest.

However, I am grateful that it's something we don't have to consider. She will finish her treatments. She may try and tell Dr. Leuchter that she won't. But he'll give her that fatherly gin, put his hand on her shoulder and she'll turn into silly putty in seconds and she will go on. The alternative is just not an option right now...

So, to get back to the original question, how is Nancy? If you ask Nancy how Nancy is doing, you might get an "okay" or a "not bad." Being in the funk of chemo, it's hard to tell - it's that chemo relativity thing again. I think it's because she wants to feel, or at least is expecting to feel like she used to feel. And that ain't happenin' right now...

But more than just the yucky stuff and the pain and the discomfort, acceptance of the disease and her condition would make it easier to swallow. She even admitted to that tonight on the way home after a little spiritual hiking in Sherman Oaks...

"And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing or situation -- some fact of my life -- unacceptable to me, and I can find no serenity until I accept that person, place, thing or situation as being exactly the way it is supposed to be at this moment.

"Nothing, absolutely nothing happens in God's world by mistake. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes."

And we think that applies to the cancer as well...

xoxo

It's Official!

Nancy declared herself half-way done with her chemo this morning!

No film at 11 today but more news to follow in the coming months as she did mention something about a party in October once this is all over and done.

Yesterday wound up very positive by the time we left the hospital. The 80 meq of potassium can do wonders when you're as depleted as she was. More hydration today and tomorrow and then 11 whole days off. The bad part is that I have to go back to work...

xoxo

Stuck in Them Electrolyte Blues Again

Live and learn, live and learn....

Being tired, fatigued, being cold all the time, not much energy, everything is a big effort, these are some of the common side effects of the chemo but they are also indicative of low electrolytes. (Click here if you've forgotten your electrolyte lesson.) My first reaction was "What did we do wrong to let this happen again?"

Nothing really. We found out today that this will show up about 6 or 7 days after chemo and her last treatment was 6 days ago. Her blood counts were just okay too. White blood cells a little low but not enough to delay her treatment today.

The day started out with a mild level of anxiety in anticipation of the treatment to come. Nanc was just a little nervous about the day thinking about what happened during the last IP Taxol infusion and all the pain she had to endure. Anxious to the point of nausea is a better way to describe it...

So they started the IP Taxol a little after noon and damn if the same thing that happened last time didn't start all over again. Intense pain in her arms and legs that made her just absolutely nuts! She tried to describe the pain but the best she could do was "It just feels like I want to rip my arm out of it's socket."

So they suspended the chemo infusion and called the Dr. and the pharmacy to find out if this is related to the chemo or wtf? It turns out that it more than likely is not related to the chemo because it started only 30 minutes after the IP infusion started. That is not enough time for the chemicals to enter her bloodstream and cause that type of a reaction. They concluded that it was probably one of her pre-meds that caused the reaction - all of which are delivered IV - directly into the bloodstream. Now we just need to find out which one.

So much for a smooth day at the old infusion center...

So at 2:00 PM PDT, the infusion is back on, Nanc is resting comfortably, nurse Cindy is back at lunch and Dr. Lang is still in surgery.

Film at 11...

xoxo

Things to Get Excited About These Days

Good blood counts
No wait at the doctor's office
No wait for the bathroom at the doctor's office
No pain during chemo infusions
No pain at all
A quick visit to the infusion center
No visits to the infusion center
A good night's sleep
Regular movements
A nurse who doesn't say "I'm not real good at this, but let's give it a try"
Working taste buds and food that actually tastes like you remember
Having the Dr. one day say "You're cancer free."

That's the short list. Some of the other stuff I can't post for fear they'll ban the blog...

So the fog sort of listed this afternoon just in time for day 8 tomorrow. Nanc says she'll consider this thing half done on Friday.

She also said she wasn't going in for treatment tomorrow. (Yeah, and Roger Mahoney has nothing to hide.)

Watch this space for an official declaration later this week as Nanc declares herself officially half way through her treatments.


xoxo

Side Effect of the Week

Bone pain.

From the Neupogen web site:
"In clinical trials, the most common side effect was mild to moderate bone pain, reported in approximately 22% of patients. In most cases, bone pain was controlled with a non-narcotic pain reliever, such as acetaminophen."

Mild to moderate, right. That's like when they tell you in birthing class that you will experience "discomfort" during labor. I remember when Nanc was in labor with Atley and he was coming out head first but he was facing up rather than down. "Sunny Side Up" it's called. Anyway, it can cause fairly painful back labor. She looked at me at one point and said something like "Discomfort, hell. This f*&$ing hurts!" She may argue the exact wording but the sentiment is right on. Trust me. I was there and remember, I have a better memory than she does.

To visit the relativity theory again, on a scale of 1 to 10, one person's 5 could be another person's 9. Nanc was pretty high up there last night and this morning. So we finally called Dr. Lang and it seems she was supposed to be taking Loratadine (Claritin) which helps that particular side effect. We thought she was only to take it if getting an injection of Neulasta, which is the longer acting version of Neupogen. They both help raise the white blood count so that you can stay on schedule for your chemo treatments. This is doubly important in her case as they are also trying to gather more data on the protocol at the same time.

Needless to say, it hurt like hell and added to the nausea the last couple of days. Obviously we are still learning as we go on. I figure we'll have this thing nailed out by the time it's all over and we're eating proscuitto and figs somewhere in the Tuscan countryside....

xoxo

Whoa...

cu·mu·la·tive
Pronunciation: 'kyü-my&-l&-tiv, -"lA-
Function: adjective
1 a : made up of accumulated parts b : increasing by successive additions

It's the 'b' definition that will give you an idea of what the last two days have been like. Nanc is definitely feeling the cumulative effect of the chemo, particularly the nausea and fatigue. She still has an appetite but is very nauseous all the time. We are staying on top of all her anti-nausea meds but, whoa, this is some serious stuff.

Yesterday was a hydration day and when she got home, she got back into bed around 6 and pretty much stayed there until I got up at 6:15 this morning. She will climb out of the hole in the next 2 days or so, but the hole has certainly gotten deeper this time around.

More hydration is scheduled for today and tomorrow, which she's fighting because the trip to and from Cedars is so draining. But Danika and I keep reminding her of the payoff at the end of the cycle and how good she felt last time. That pretty much stops the complaining...

I have been neglecting to introduce you to a very important member of her team at Cedars. Arden is a social worker who spends her days wandering around the cancer center, holding hands with patients and family, offering support, steering people to pain management and other psychological help if needed. She is part of the total care that they provide that helps turn a potentially total nightmare into something one can actually handle. I just can't imagine anyone having to go through something like this having to put up with the red tape of a big HMO. We are very grateful to have the coverage we have.

We ran into her one day in the hallway when Nanc was having a particularly bad day, nothing was going the way we had planned and she was very frustrated - ready to walk out and just quit the treatment. And who should happen down the hallway but Arden. That serendipity thing again!

Anyway, her calming effect was almost immediate and everything worked out, obviously. We just don't know where we'd be right now without people like her and all the angels at Cedars and beyond. Help comes from so many unexpected places it continues to amaze...

xoxo

Anticipation...

Can you hear Carly Simon singing? It's the first thing that popped into my head when Nanc described her feelings about round 3. When I got home from work and saw the anxiety in her shoulders, I knew she wasn't what you would call "excited" about the proposition of two chemo treatments in a 24 hour period. Imagine that!!

Anyway, once we got here, got the scheduling conflicts worked out, got settled with Erin, one of her
favorite nurses, (I need to take her picture!) the first IV treatment went just fine. Especially after the IV Benadryl!

So Wednesday morning brings the IP treatment with the platinum drug. There is still some muscular discomfort that we think is a hold-over from the surgery that pops up when they start the IP infusion. It takes some maneuvering to get comfortable but some pillows and a silly romantic comedy seem to help.

Allow me to introduce the next of Nancy's angels, nurse Cyndy (not a typo.) You want to talk about a nurse that can make you feel at ease and comfortable, she is the one! A very cool mother of three, she's been doing this a long time and is just amazing at dealing with curve balls and sliders. Her abilities went a long way in making today a much better day than it could have been. Nanc used the term "motherly" to describe her and then broke into tears when she started thinking about her own mom and, I am sure, her battle with cancer...

So we got home early and are awaiting Sara, the acupuncturist, for treatment #2. Atley called from the Dr.'s office himself today and has a fever of 102 and a nasty case of pharyngitis. Guess he won't be visiting any time too soon...

So I started this post at about 10:15 this morning and it's now almost 8 pm. That's how the days go sometimes...

More tomorrow.

xoxo

Nearly half-way there!

I know - it's been a couple of days. Remember one thing though - "No news is good news."

That means, in Nancy's own words, "I almost feel normal!" She said that Friday afternoon, or was it in the morning, I can't remember. The important thing is that she has felt half-way human the past 4 days or so. I can tell she's feeling better as the amount of specific direction increases in direct proportion to her level of comfort. I seem to do OK when she's really down from the chemo but seem to slack off somewhat in my duties when she's feeling better. How exactly does that work I wonder...

So tomorrow starts round 3. In about a week, she will be half-way done! We are more ready for this round than the previous 2 given what's been learned, even down to making sure that certain medications are pre-ordered so she won't have to wait in case she really needs them.

She is starting acupuncture with someone different this afternoon, she is eating well right now, getting some exercise walking and even putting in a few hours of work. The first appointment is at 4 tomorrow and she'll be in overnight for the IV treatment. Then they'll start the pre-meds for the IP treatment at 8 Wednesday morning. Barring any complications, we should be home by 4 Wednesday. I'll keep you posted....

xoxo