GOOD NEWS!

My last PET scan was CLEAN.   The CT showed minimal activity in my bones and liver but it was much better than I thought it would be! 

I now receive treatment every other week and the chemotherapy (the most difficult drug) is no longer part of the plan.  I'll continue with the bio-therapy, Avastin. It has mild side effects but I've tolerated it well from the beginning. 

I'm replacing the chemotherapy with a hormone treatment, Tamoxifen, a daily pill that I take at home.   This will reduce the estrogen in my body to almost nothing (my type of breast cancer likes estrogen).   I'm starting to experience some of the side effects, but I'm taking it one day at a time and hoping it's a manageable treatment for me.  I was under the impression that Tamoxifen was only a "place holder" and wouldn't fight the disease but I learned that some tumors respond better to this type of treatment.  It's possible that the remaining active tumors will continue to decrease during this phase.  There's no reason to think this won't work for me, but I'll feel better after my next scan (in three months).

My body, mind and spirit feel lighter.  I know I'll slowly start to feel better and that for now, the worst is over.  It's likely I'll have chemotherapy again but hopefully that won't be for a long, long time.

I've come much further than I believed possible and I know we wouldn't be where we are today without the love, prayers and support of all of you.  I truly believe that you've made a  difference. THANK YOU ALL! We are truly blessed. 

Read more...

Life with Cancer is Hard, Part III:  Stuff isn't getting done

Although my physical symptoms are difficult and tiring, the schedule and fatigue are harder. I was talking to someone recently and mid-conversation she said, "I just realized how much time you lose every week. I feel behind when I have one busy week."  Yep, it's tough.

It took me a long time to understand why my "to do" list wasn't getting done.  I finally realized that between being at the clinic, not feeling well, and not having much energy, I've lost a lot of time this year.   I finally did the math and over the last 11 months, I've lost approximately 99 days (3 days a week, 3 out of every 4 weeks), which is almost 1/3 of a year.   No more wondering why I rarely get together with friends, didn't finish any projects this year (including fun ones) and couldn't even consider joining the PTA.

Even simple things take me a long time.  I think it's sad that I'm proud of myself for doing mundane tasks like scheduling a dental appointment or taking the kids in for their check-ups.   I feel bad when I think about the things that aren't getting done, like taking poor Katarina to the vet.  It's on the list, but other things have to come first.

I took my Christmas thank-you notes with me everywhere for two months, thinking I'd find a few minutes to write them.  I finally had to accept that they weren't going to get done.  I know everyone understands but it was hard to let go of something that I've done since I was a child.   My list of "what's not getting done"  is getting longer and it sometimes feels out of control.  I'm smart, I'm organized -- why can't I figure this out and make it better? Most things can't be done by anyone else, and although it's helpful when I delegate or let go of chores, it's not enough.

Those who know me well (or even not so well) understand how much this bothers me.  Both because I like being organized and because I put a lot of pressure on myself to "get it together".  My rational side understands that I need to give myself a break but I don't. Even though my current schedule is probably ending soon, I'm wondering if I'll ever catch up because it might take a year for me to feel better and get my energy back. 

My schedule has also had a profound effect on James.  Because of his added responsibilities, he never sleeps more than 4 or 5 hours a night. One day he said, "I don't think I've slept more than 3 hours all week".  I don't know how he does it. I try to give him a break when I can but he rarely takes it.  I know he's driven to do everything he can to help our family but I worry because he's not taking care of himself.  And it's hard to argue with him about some things. For example, we have a friend who's willing to bring Olivia home from her swimming lessons (she already takes her there.....thank you, Callie!) but James goes to her lesson after work because he enjoys watching her swim and Olivia loves having him there. He's an amazing husband and father, even under these difficult circumstances.

We've been coping as well as we can but we're both feeling the strain and I know we can't go on like this for much longer.   Even if I continue to be tired for a while, it will be a blessing not to be tied to the chemo schedule and slowly have the aches and pains decrease.  I don't know if our lives will ever be like they were before I got sick but I do believe even a small change will make a big difference.

Read more...

Life with Cancer is Hard -- Part II:  My Week with Chemo

First of all, thank you for the support and positive feedback I received after my last blog. It certainly answered the question, "How much do you really want to know?"  

I've decided to write this in 3 parts, rather than 2, because I'm realizing that it's a lot of information.   If I tried to write it all at once, you might not get the next installment until June!

Here's what a typical week looks like:

Monday: I consider this a lost day because I'm at the hospital for most of it. What should take 5 hours usually turns into 6 or 7. Sometimes there aren't enough nurses doing blood draws (it takes longer from a port and only nurses can do it) and sometimes Dr. Kaplan is running behind, but most often there's a delay in getting the chemo drugs to the clinic. Occasionally all three happen which makes for a long day.

 

One of the many things I put under the category of "adding insult to injury" is that the steroid I receive to help with nausea also winds me up -- starting at 9pm. I often don't fall asleep until 1 or 2am.

Day One of not getting enough sleep.

Tuesday: Tuesdays go quickly because I volunteer in Olivia's class while the boys are in preschool. I feel pretty good until late afternoon/early evening, when I start to get tired and a little achy. Knowing that I literally won't do anything on Wednesday, I stay up late getting as much done as possible.  My goal is to help Wednesday evenings go more smoothly for James when he's on his own.

Day Two of not getting enough sleep.

Wednesday: I feel tired, achy and "drugged". I often can't focus enough to even watch TV, so I spend a lot of time listening to my iPod (Podcasts are my friend, if anyone has any suggestions). I sleep a little but I'm often restless. I don't have the energy to get up but not I'm not tired enough to sleep. I'm often wide awake at 3am and sometimes I'll get up to brush my teeth and take a shower.  I don't feel better at that hour but the drive to do SOMETHING usually wins.

My sleep pattern is a mess by Thursday and it takes me a day or two to get back on track.

Thursdays: I still feel slightly drugged, although it's been better the last few weeks because I asked Dr. Kaplan to reduce the amount of steroid I receive (at the suggestion of a nurse). I still don't feel well, but I'm not as loopy. The downside of the decreased steroid is I'm more nauseous but I have meds that help and I think it's a good trade off.

A chemo side effect I haven't mentioned is weak and achy legs, which I notice a lot on Thursday and it continues through the weekend to a lesser degree.

On Thursday morning I can write a couple of e-mails, get the boys dressed and eventually get them to school but that's about it. I feel better by early afternoon but start to slow down again around dinner time.

Friday and the Weekend: I don't feel 100% on Friday but I'm getting there. I usually feel relatively good on the weekends, although the last two have been harder. My body has done a great job tolerating chemo but I think it's finally tired of being poisoned and I'm not rebounding like I used to. I appreciate my weeks off but I don't get my energy back like I did at the beginning. I'm starting to get a little depressed about it and there were a few tears last weekend when my energy hit an all time low.

I didn't see Dr. Kaplan last week but I did talk to the nurse about my fatigue and she had two thoughts. The first was that the medication I'm on eventually catches up with you in a big way (ugh). She also suggested increasing my protein and water, which I did, so hopefully I'll feel better in the coming weeks.

Next time, Part III: Stuff isn't getting done 

Read more...

Life with cancer is hard.

I've been thinking about that a lot lately.  Although the shock has worn off and we're somewhat used to our new routine, life isn't getting easier.  I've been encouraged to talk about this more and at first I wasn't sure I wanted to.  Two recent conversations led me to think it might be helpful for everyone (including me) to have an honest discussion about the reality of our life.

My friend Caroline took me to treatment a couple weeks ago and the nurse asked about my nails. I told her they were painful and ugly. I didn't think twice about it but the first thing Caroline said when we left was, "I didn't know about your nails".  My reply was something like, "It's just one of the many annoying side effects from chemo.  If I talked about all of them, you'd be bored silly."  She didn't see it that way and wanted to know more.    

I also had a conversation with Mary.  She mentioned that sometimes she asks me how I'm doing and I change the subject. I had no idea I did that!  I think of myself as an open book, willing to answer any question.  But I'm also careful not to talk about myself too much. I don't want anyone to get tired of hearing the same complaints and I also want to present myself as the perfect cancer patient, whoever that is.  And really -- do you want to be reminded that even though my emotions are more manageable, I still have many fears and sometimes start to cry when I look into Olivia's eyes? Or just because I pull myself together and don't look sick, I still struggle physically every day?  In my mind, you're looking to me for strength and reassurance.  If I'm presenting myself in a positive way, then you'll feel that way, too.  However, this does get tiring and I sometimes find myself saying, "They just don't understand'.  I realize that people won't understand if I don't tell them what's going on, so I'm going to start with, "Ricci's Chemo Side Effects 101".

I'll address this in two parts.  First, I'll talk about the side effects I deal with everyday.  Next time I'll focus on what a typical treatment week looks like as well as the profound effect my chemo schedule has had on our family.

I'll start from the top (literally):

HAIR: You all know I wear a wig and have lost most of my eyelashes and eyebrows. It takes some make-up magic just for me to look "normal".  And as easy as it is to wear a wig, I'm getting tired of it.  I try not to think about it too much because it will take time for my hair to start growing after I stop chemo (the next step won't involve hair loss) and even more time for it to be long enough to go out without a wig.

By the way, I'm on look number 4 -- another lesson is that wigs don't last forever!

You might be surprised to learn that I've also lost most of my nose hair.  That means I don't have much of a filter. To compensate for that, my nose runs ALL THE TIME and I sneeze frequently.  That got old fast.

EYES: My eyes water a lot and I've had vision changes that aren't completely corrected by my glasses (that should go away once I stop chemo).

NOSE: I have sores in my nose which sometimes bleed and occasionally make it hard to breathe.

TASTE:  Many foods don't taste the same. Some foods taste bland, others are too sweet or salty.   The only time it bothers me is when I've been craving something and it's just not the same, or sometimes not good at all.

NAILS: My nails are discolored and painful. I've been lucky not to lose my nails but they're extremely sensitive.

FINGERS:  I often drop things because the tips of my fingers are numb or tingly (mugs, frames and assorted household goods have been broken over the last few months).  My toes are affected, too, especially at night.  Some patients have to stop this particular treatment because this side effect (neuropathy) is so severe.  I'm "lucky" to be tolerating the treatments as well as I am.

PORT-A-CATH (where the chemo is infused): My port drives me crazy.  I don't always notice it but the skin around it is pink and it sometimes itches from the inside. There are days I want to yank it out but of course I can't.  As long as it's not infected, it's the safest and most effective way to receive chemo.  It's possible I'll have it the rest of my life, so I'm trying to find ways to make it more comfortable.

BACK/NECK: My back and neck are very stiff and some movements are difficult (getting in and out of the car, looking at something behind me) and there are times when I”m quite uncomfortable. 

DIGESTION: I have various digestive issues, including reflux

HORMONES:  My chemo is hormone based and has basically put me in to menopause, hot flashes and all.   This is annoying but I'm dealing with it.  It was going to happen at some point, right? The hormones and pre-treatment steroids (which help with nausea) also affect my mood. 

CHEMO BRAIN:  And then there's "chemo brain".  It snuck up on me and it's one of the most frustrating things I'm dealing with.   I often have word finding problems and once in a while I can't put a sentence together properly.  I also have trouble focusing and following through on things. It's more important than ever that we're organized and it's getting harder for me to plan and think ahead because my brain is so muddled. This is also related to my fatigue, which I'll address more next time.

To be continued.....

Read more...

If I have a choice, I won't have a PET/CT scan during a treatment week again.  I thought it might make a small difference in how I felt but the pre-diet was tough (I was still slightly nauseous that day so nothing I could actually eat sounded good) and I still felt weak on Friday (probably because I hadn't eaten much Wed and Thurs!). But I made it through and got the results today.

Although the progress has slowed (which is typical at this stage), the change from 3 months ago is statistically significant, which is a good thing. I even got a hug from Dr. Kaplan, who seemed sincerely happy with the results.  He said he wishes he could give me a break but as long as progress is being made, you stick with what works.

The plan is to continue with this schedule until the middle of April when I'll have another scan.  At that point I'll have completed 36 treatments (12 rounds).  That sounds like a nice place to stop, doesn't it?

When the time comes for a change, the next step will be a hormone based oral treatment that I'll take at home and monthly trips to the clinic for zometa (the bone strengthener) and avastin (the bio-medical treatment, not a chemo).  That's something to look forward to!

I'm almost done writing my next post, which talks more about how the last 29 chemo treatments have affected my body and life.  It will give you an even better understanding of why I was hoping for a lighter treatment schedule.  

For today,  I'm happy with the continued progress as well as the love and support from all of you!

Read more...

I was scheduled for a PET scan last Thursday but received a call that morning saying the machine was broken and I'd need to reschedule sometime this week.  I realize there was no way I could have known this ahead of time but I was still annoyed that I had spent the last 24 hours on a very restricted diet. And if I had more notice, I would have planned lunch with a friend or something else fun!

Dr. Kaplan had called earlier in the week with my cancer marker blood test results and I was actually disappointed with them.  They do show progress (less cancer) but the difference from 3 months ago is minimal.  This made me wonder if there was enough change to warrant a reduced treatment schedule.

I talked to Dr. Kaplan this morning and he said the blood test really only tells him if there is more cancer or less cancer, not how much change there has been. So I still need the scan, which I've scheduled for Friday.

 Another incorrect assumption I made was that if the scan showed a certain amount of improvement, my treatment schedule would be reduced.  It's actually the opposite.  If Friday's scan shows any improvement, I'll continue on this treatment schedule because the current drugs are still working.  If we've hit a plateau (which isn't likely, based on the blood test), I'd be put on a new medication with a less intense treatment schedule.   That's not intuitive, is it?  But that's what it is.

So, although I'm disappointed that I won't have less treatment any time soon,  I guess it's a good thing.

Read more...

The "sore throat and cold" I mentioned last month turned out to be a nasty virus. It started 10 days before Christmas and I didn't have much energy until New Year's Eve.  Just as I started to feel better, I got an ear and sinus infection. I'm thankful that James and the kids stayed healthy.  It would have been too much if we were all as sick as I was.  

I went to Urgent care the first week because I was sure I had strep throat.  I didn't have a good experience (not one staff member smiled) but at least I found out it was "only" a virus.   The doctor told me I was just like the 20 other patients he had seen that day and he didn't seem concerned that I had been receiving chemo for 8 months.  My favorite line was, "I hope you feel better soon but I doubt you will".

Nice, huh?

I saw Dr. Kaplan two days later and told him about my experience.  He gave me a more thorough exam and said next time I need to call him so he can remind me about signs of a secondary infection. He also said he would have been nicer to me.  I have no doubt.

I thought I was going to have another PET scan at the beginning of the month but I'll finish one more round of treatment first.  I really don't know what the results will be. It might look the same as it did 3 months ago, be marginally better, or a lot better.   Whatever it says, you know what I hope the outcome is -- less treatment!

Read more...