I had my "six months post chemo" scan and all is well.   Dr. Kaplan went over the results in detail because he knows I'll re-read the report several times and get stressed if there's something I don't understand.   He always tells me I can call with questions anytime, but he also knows that I don't. 

The report says that there's some activity in my liver, but it looks like either scar tissue is forming or it could be liver regeneration.   A line I didn't like was, "Not likely a recurrence".  Not likely? How about just, "NOT"?  I let go of that worry quickly, because I know if there was even a small possibility that my current treatment of bi-weekly Avastin and daily Tamoxifen weren't working, Dr. Kaplan would change the treatment plan. 

I'll write more soon about how I'm feeling, but I wanted to get the good news out!

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More good news!

Every month I get a cancer marker blood test, which measures the amount of a certain protein that is only produced by tumors.  A normal test result is anything under 39.  Before treatment I was at 1580 and in recent months it's been fluctuating between 60 and 70.  I was thrilled with this improvement and never expected it to be normal. However, my most recent test was 36!  

This test is used as a scale to see how things are going, but doesn't give exact information.   Because of this, Dr. Kaplan said the number might fluctuate a little, but I shouldn't worry if it does.

I'm still dealing with old and new treatment side effects, but I'm thankful that I don't have the more extreme side effects of Abraxane anymore.  I'm getting used to the Tamoxifen side effects, which include daily hot flashes (mostly mild, sometimes annoying) and anxiety. Patients on Tamoxifen are often given anti-anxiety medication but I decided to look into more natural ways to combat how I was feeling. I'm not against these medications (I was on some a few years ago for "post partum blues"), but my system has been through a lot this year, so I saw a naturopath and started taking some supplements, including mega doses of Omega 3's. It took about a month but I believe they're taking the edge off. I'm slowly implementing some of her other suggestions for chemo recovery and general health. 

Although I've been on Avastin from the beginning, my blood pressure suddenly went up a couple of months ago. In fact, it was high enough that I had to skip treatment that week. I'm now on a low dose of blood pressure medication which I will continue taking as long as I'm on Avastin.   Dr. Kaplan gave me 12 refills, so I'm thinking Avastin will be part of my life for a while!

Speaking of Avastin, you may have heard that the FDA removed the approval of its use for breast cancer. We've contacted our insurance company several times but they're still deciding what they're going to do. We do know that Medicare will continue covering Avastin for breast cancer and most insurance companies will follow their lead. We're going to stay on top of it because we don't want to be presented with that bill! We had a scare recently when we received a letter from Dr. Kaplan's office, stating that a bill hadn't been fully paid by our insurance company and we needed to look into it or pay the $55,000 balance. No thank you! We don't know why there was a delay in processing, but it ended up being covered at the rate we're used to. 

Although I feel much better and have more energy, I still get tired more easily than I like to admit and I have to pace myself or I "crash", usually at an inconvenient time.

The arthritis I mentioned in the previous post seems to be getting worse. I'm hoping it stabilizes or I find a way to manage it. Each of these side effects finds me saying the phrase, "adding insult to injury". As if things haven't been tough enough, the arthritis makes me feel much older (Olivia tells me I sometimes walk like Grandma, who has knee problems) and the Tamoxifen makes me crabby. But, it's better than chemo!

My eyebrows and eyelashes have started to come back, which has been fun to see. Although they aren't where I'd like them to be, I feel a little better about how I look without make-up.  And my hair is slowly growing back. Some of it is grey and some of it is my natural color (I've been asked about that). We'll see if it's as thick as it was before -- right now it's hard to believe it will be, but you never know. I"m hoping to stop wearing my wig by early next year. Maybe sooner. 

We're trying to enjoy these last days of a very good summer.  It's hard to believe Olivia will be in 2nd grade and the boys will be in Kindergarten. We're looking forward to the year ahead, which hopefully will include more good news! 

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Quick Update:

I had a scan last Friday and because it was the first scan since I stopped chemo and started the new treatment, I was anxious to get the results on Monday.  It didn't help that I've had some aches and pains in my bones and an odd sensation in my liver.  The (very) good news is my scan was stable and I'm breathing easier today.  There's still one stubborn spot on my liver, but it's small and hasn't changed in a long time. Thank you for all of your prayers and support.

I probably have chemo related arthritis and I'm likely feeling scar tissue in my liver.  It's funny how your perspective changes -- that actually sounds okay to me!  I wouldn't choose it on it's own, but it's much better than hearing my tumors have returned. 

I was thinking last night that if I had to go back to chemotherapy this soon, it would be really hard.  Among other things, my eyebrows and lashes have just started growing back and my hair has barely had a chance. How unfair would that be?

I also realized that even if the Tamoxifen wasn't working, I wouldn't be back to "square one" and probably wouldn't go back to the intense treatment schedule I was on.  Thankfully, I don't need to worry about that for a while.  Good thing -- I'm ready to get back to our busy summer. 

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I started writing this in May, close to one year after my diagnosis and the start of chemotherapy.  The true anniversary has passed, but it still feels like a good time to reflect on the most intense year of my life.  James and I haven't talked to many people about those early days, so I'll start from the beginning. 

Looking back, there were subtle signs that something was wrong several months before my diagnosis.  For example, even though I'd been taking the same exercise class for a few years, it became more difficult.  At first I thought it was because I had a new instructor who used different equipment, but now I believe the tumors on my bones had decreased my range of motion and made the movements more painful.

In April, I started having what I thought were problems with my gall bladder.  The doctor wasn't sure and thought it might be 'tummy troubles", but she also scheduled an ultra sound. I think what she initially felt was my enlarged liver but she didn't realize it.  Given my symptoms, I know that many doctors could have come to the same conclusion, but I've decided not to see her again.  When I finally did have an ultra sound, it showed that my liver was so large and full of tumors, it had virtually flattened my gall bladder.  Before the results, I remember thinking, "It will be so inconvenient if I have to have my gall bladder removed."  Now that sounds like a picnic! 

My doctor was out of town when the results of the ultra sound came in, so I saw a doctor I had never met before.  I know she couldn't have presented this as good news, but because she was young and obviously hadn't done this before, she made it even worse.  I left the office thinking all was lost and I was to blame.  As if things weren't bad enough! 

About that time, my physical symptoms increased dramatically.  My bone pain became unbearable and I couldn't sleep, turn myself over in bed, get dressed by myself or walk very far.  James later said he thought he was watching me die.  I recently found the lists I made during that time, one of things I wanted to get done and one of information I thought James would need to know when I was gone.  The lists are far from complete but I don't spend much time thinking about them. What a difference a year makes. 

The first oncologist I saw seemed to know what she was doing but I felt like a "case" and not a person.  She also said, (are you ready?), "I see people live with bone metastasis for 10 years. Of course, you came a little late."  James and I looked at each other, thinking, "Did she really just say that?"   The truth is, she may be right, but neither of us could believe she had said it out loud.  And Dr. Kaplan said he's seen women do well on Tamoxifen for 20 years, even with as many tumors as I have.  We do have to be realistic, though, because the average amount of time it works is two years.  The good news is there will many options for me after Tamoxifen.  That sounds a lot better than, "You came a little late!"

I knew I should get a second opinion, but my friends also encouraged me, and for that I will always be grateful.  Changing doctors was by far the most important decision I've made.   I'm getting a little emotional as I'm writing, because I know that whatever the future brings, my life is going to be better than it would have if I stayed with the first oncologist.

We were told by one nurse that a second opinion wasn't needed because there's only one accepted treatment plan for Stage 4 cancer.  She even showed me the large book of treatment options that many physicians use. We now know that she was wrong.  Her statements led us to be very surprised when Dr. Kaplan proposed a much more aggressive treatment plan. We already knew he had a reputation for being a fabulous doctor, but we quickly realized we had met someone who truly cared about us.  The day we met him was the day hope was born.

As you can see from this brief essay, we received a lot of bad information and weren't always treated with respect.  Looking back, I can't believe how horrible that was and how much stress it added to an already unbearable time.   That's why when I hear someone has been diagnosed with cancer, I want to help them.  Even if they have a different kind of cancer, even if they're a daughter and not a patient, even if they have a good support system.  I found that there was nothing more reassuring than talking to someone who had been there.  I hope that none of you are faced with this yourselves or with someone you care about, but if you are, please feel free to contact me. 

Within a month of starting chemo, my pain subsided.  It's been a long road and I'm still dealing with some side effects from chemotherapy and adjusting to the tamoxifen (more on that next time), but thinking about the past is a good reminder of how far I"ve come.   I know we should do a little more planning for the future, but after the year we've had, I just want to live for a little while. 

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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. 

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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.

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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 

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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.....

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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!

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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.

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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!

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