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

Tweaking and the art of cancer treatment

So we met with Dr. Lang yesterday. I want to call her Jennifer which I can do in person, but when I write, it keeps coming out with the Dr. title. Someone please 'splain that to me...

Anyway, to see Nancy's treatment schedule for round 3 which starts next week, in comparison to her first round of treatments, gives one an appreciation of how the art comes into play here. She is scheduled for a total of 9 visits to the infusion center over the 2 week period surrounding her treatments. These include three chemo treatments, 5 hydrations, 4 or 5 white blood cell boosters (neupogen and neulasta) and one blood test. This was all tweaked since her first round, which was only 3 visits and, you will recall, pure hell...

One of the things we we have discovered is that different patients can have widely varying reactions to the same exact chemo protocol. The art of the treatment is when the team analyzes and adjusts for the reactions and side effects.

The results of that tweaking were displayed yesterday as our visit was so much easier and calmer than other visits. Nanc was totally exhausted by the time we got home, but as I keep saying, the difference is like night and day. Plus I think the routine has taken over for us even more now.

She of course doesn't feel the difference as much as we see it. That is because it was still like being in a "shit-hole" for 5 or 6 days as she likes to put it. What it comes down to right now I think, is that she is now a full fledged, arrow packing, gun toting cancer warrior.

I need to take some pictures with her blue scarf, white knit top and beads. She looked very good if I have to say so myself. I would say more but know the kids would get grossed out so I will keep that between Nanc and me.

xoxo

I almost forgot!

Dr. Lang finished her first marathon on Sunday in a time of 4:20:29. Now I'm not much of an expert on marathon times, but having attempted similar things on the bike and recently in the pool, I am impressed that she not only finished but finished 416 out of 1454 women and 1879 out of 4275 overall!

Congratulations to Jen and here's hoping you all sent in your checks ;-) You forgot? Go back to this post in case it slipped your mind...

I am skipping days here lately because there's not much to report in the way of treatment, complications, major side effects, etc. All in all, like I said on Monday, the week has been very good relatively speaking.

The difference between rounds one and two is seriously like night and day. Nanc's taste buds are still a little slow coming around - things are mealy but getting better. She's gotten out to two meetings and is planning on more outings as her energy allows. She has been experiencing some abdominal pain that Dr. Lang thinks is from the chemo. We see her later today and will report back if she says anything different.

The biggest development to report is that she finally hired someone to come in and help her take care of her clients! We got a call last Saturday from an old friend named Sean who used to do a little work for her years ago. She heard about Nanc's situation and was just calling to see how she was doing. Sean is a cancer survivor herself and has been cancer free for quite a few years. They were comparing catheter port scars in the kitchen last night. Sean was jealous because Nancy's surgeon did a better job...

Anyway, Sean has been working doing books for quite a while and has just gone off on her own and had some extra time. The current plan is to have her come in twice a week. To say that she blew through the input yesterday would be an understatement. The girl is fast...

Serendipity strikes again...

xoxo