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