Ugh.

I had a scan in August which showed that two of the tumors had responded to Xeloda, but the other two hadn't.

Dr. Kaplan, James and I had a long talk about my options. Dr. Kaplan again said his first choice was for me go back to my original chemo, Abraxane. I was open to that, but he also presented two treatments that were more appealing. I chose the I.V. chemo Navelbine, which has fewer side effects than Abraxane. They include:

-Decreased white and red blood cell counts, so I'll likely be giving myself shots again 

-Bone pain

-Nausea

-Hair thinning (20% chance of hair loss)

-Fatigue (of course)

There are others, but those are the most common.

I got a new port-a-cath and started treatment on September 6th. I didn't want a port, but I'm actually okay with it. I appreciated that the surgeon took the time to remove some of the scar tissue and put the new port on the same side as the old one used to be. The surgeon said he preferred to keep the scars on the same side (I'm not sure why - maybe in case another procedure needs to be done on the left side?) and I'm happy that I don't have a matching set of scars.

My first treatment went fine. I had two of my favorite nurses, which made it easier to return. I got some hugs and one nurse said, "Its great to see you, but I'm sorry I have to see you", which sounds about right. Navelbine takes 30 minutes to administer (including the pre-treatment med and the saline flush), which is great. My last treatments alternated between 90 minutes and 2 hours. Navelbine is given by "push", which means the nurse uses a syringe to directly put the drug in to my port. Abraxane was a "drip", where the bag was hung and the drug dripped through a tube in to my port. There will still be days of long waits at the lab and longer waits at the treatment center, but treatment will go quickly once I get started. Sounds good to me!

I'm thankful that I asked the nurse how much of the pre-treatment steroid, Decadron, I was receiving, because she said twice as much as I used to get. Decadron helps with nausea, but also caused my weekly "down days" (36-48 hours) and I couldn't imagine getting twice as much. It took a while to reach Dr. Kaplan, but it was worth the wait because he reduced the dose. I was queasy and a little "off" for 2 days, but I think that was a good trade off for receiving less of the steroid. I was proud of myself for being assertive and getting (less of) what I needed. Dr. Kaplan said if I do well at this dose, he's willing to reduce it again. That would be nice!

Something I forgot about was that I can't sleep after I receive the steroid. I got some chores done at 2am, but eventually it wasn't fun to be wide awake in the middle of the night. Dr. Kaplan suggested Tylenol PM to help me sleep next time, which should help without giving me a "sleep med hangover" the next day. I also forgot about the odd leg pain I get, which has already started.

When we talked to the kids about my treatment, they seemed to take it in stride and only have a vague memory of the last time I had chemo. Olivia was relieved that I wasn't going to lose my hair (knock on wood), because she equates that with being "really sick" and she made no secret of the fact that she didn't like how I looked, even with a wig. The boys said, "Okay" and moved on. I was happy when all three kids asked questions later, because I was afraid they were going to internalize it or be afraid to talk to me about it. In some ways its good that they're older and in school full time, but they also have more activities, need more help with homework, etc. I'm sure we'll figure it out.

Dr. Kaplan doesn't know for sure, but there are two potentially worrisome things about this latest development. The first is that it appears that my "hormone receptive tumors" have already become hormone resistant, which removes an entire class of good drugs that I can benefit from. Its also possible that only some of my tumors mutated, which is why I had an uneven response to the Xeloda and could make the tumors hard to control in the future. On the other hand, they might not have changed at all and Abraxane happens to be one of the drugs that all of the tumors respond to evenly (which is why it's been Dr. Kaplan's first choice). I'm not going to play this game much longer (and I suspect Dr. Kaplan won't let me), so if the Navelbine doesn't work, I'll probably go back to Abraxane.

One step at a time.......

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Here we go again....

I had a PET/CT on May 1st, which showed 4 small active spots on my liver. Dr. Kaplan described them as the size of "salt and pepper". The good news is they're small, and the bad news is the hormone treatment I was on didn't work, so I'm back to chemo.

Even though I wasn't surprised (because my cancer marker numbers have been going up), I had a small tantrum in Dr. Kaplan's office. I told him I didn't want to go back to chemo, but if I had to, I'd like to wait until the kids go back to school in the fall (I knew I was being silly, but Dr. Kaplan didn't think it was funny).

He gave me 3 options. The first was to go back to abraxane because I did so well on it the first time. I stopped receiving it because I didn't need it anymore, not because it wasn't working, so it will likely work again. I understand that, but I didn't like that option because I'd need a new port-a-cath, plus I'm well aware of the side effects and I'm not ready to go back to them. And I kind of like my hair.

The second option was also an I.V. chemo that has fewer side effects, but being "down" a couple days a week and losing my hair are on the list.   Next, please......

I decided to start with Xeloda, which is an oral chemo I take twice a day at home. Its an interesting drug. It doesn't become active until its gone through the blood stream and "finds" the cancer cells.  Once inside the cells, it converts to 5 FU (no kidding - it stands for Flourouracil) and attacks the cancer cell's production of DNA and RNA, thus (hopefully) killing the cell. It does affect other cells, but the effects aren't as widespread as with I.V. chemo.

As expected, the main side effect of Xeloda is fatigue, which will get worse with each cycle. Another common side effect is "hand/foot syndrome" which causes burning, redness and peeling. I'm taking megadoses of vitamin B6 and have lotions which are supposed to help, but unfortunately I did get painful blisters on my feet at the end of the first cycle. As a result, I'm already on an extended break from chemo (an extra week) while my feet heal. When I start taking it again, I'll be on a lower dose. I'm hoping that allows me to continue on this track.

Because I take it every day for 2 weeks and then have one week off, the effects will increase over those two weeks and my week off will be a true recovery week. One "good" thing about abraxane was that I felt pretty good at the beginning of my week off, because it had already been 7 days since my last treatment. On the other hand, if the side effects aren't as bad with Xeloda, I won't need as much recovery. Time will tell.

My next scan will be in August, but I'm not sure what will happen if my cancer marker number continues to go up. Dr. Kaplan did say we have time to figure it out because the tumors are so small. If the Xeloda does its job, I'll probably take it for at least 3-6 months after the scan. If it's not working or I don't tolerate the new dose well, I'll switch to "Plan B", whatever that is.

To be honest, I'm not happy. I'm not happy that it's only been 2 years (a little less) since I stopped chemo and the first remission is usually the longest. I'm not happy that the side effects may impact our summer. I'm not happy that I have to tell people the cancer is back. Even though this is a "lighter" version than the first time, it's not news that anyone wants to hear and I don't like putting people in the position of figuring out how to react.

I've been struggling with these emotions and trying to figure out the best way to handle them (and the recurrence in general).  Dr. Kaplan asked me how I was doing and I said, "Better, but I'm still questioning my treatment decision and wondering if I should be complaining about blisters as long as Xeloda does its job."   He told me I'm doing everything right and he knows that I'm a Warrior who pushes through as much as I can. I'm not sure I believe that, but it was just what I needed to hear.

I did cross Occupational Therapy off my list last week. I still have some things to work on, but I can finish the final steps at home. I saw the orthopedist last week and he said, "It's hard work to get over a broken wrist, isn't it? But you did it and there are worse things." Yeah, I know.

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The fun never ends.......

After 9 weeks in a cast and 2 weeks in a brace, I finally have my arm back. Mostly.

I had the pins removed in the doctor's office, and although the first two came out easily, the doctor said the third one was going to be difficult and we could either go back to to the operating room or he could continue and it would hurt. It did hurt and I still have mild-moderate nerve pain in my thumb and through my palm and wrist. By the way - he gave me the "pins", which look more like nails. No wonder they bothered me!

I have some mobility back, but my wrist is weak (I can't carry a cup of tea with my right hand) and there are things I still can't do (turn a doorknob, use a spoon correctly). I started Occupational Therapy two weeks ago, which is helping. I'm thankful that the clinic is close by and I like the therapist.

In medical news:

My cancer marker numbers have been creeping up, but they increased even more over the last three months. Those numbers, combined with my last scan which showed a "questionable" spot on my lymph node, led Dr. Kaplan to change my oral medication from Tamoxifen to Arimidex. Arimidex is still a hormone treatment, but it works in a slightly different way than Tamoxifen. It has been shown to work well for women who are exactly where I am now (were on Tamoxifen and then had a recurrence), which is reassuring. The major side effects are bone thinning/osteoporosis and increased cholesterol, which will be monitored. Minor side effects are fatigue, moodiness and sleep disruption. I'm still adjusting to it, but I have fewer side effects than when I first started taking it (I'm on month 2). The drug takes 9-12 weeks to work, so my next scan is scheduled for May 1st.

I'm a little concerned because Tamoxifen usually works for at least two years, and sometimes much longer (10 years!). I'm short of that at 21 months, but Dr. Kaplan said that's not an indication of how well I'll do on other treatments. To be honest, I have trouble believing that. I find my mind wandering to "what ifs" and making (not-so-funny) jokes about hoping I won't have to go back to chemo until September, because it will be easier when the kids are in school. And saying that I can't go back now because my hair has just reached a decent length. And I don't want matching port-a-cath scars. I still have a red line from my port removal a year ago. I know I have to trust Dr. Kaplan and continue with my mantra, "Today is Good". Because it is.

The kids are doing great and enjoying school. Olivia loves gymnastics and the boys started swimming lessons again. We're going to a Mariner's game this month, which will be the boys' first "big game".

Happy Spring to All!

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Although a lot has happened since I last wrote, this will be a short update because I'm typing with my left hand. Many of you know that I went for a walk on the 31st, slipped on an icy area and broke my wrist. I had surgery on the 18th because it wasn't healing properly. I know I'll be happy I did it, but who knew 3 little pins could cause so much pain?

From the beginning, I've had a cast that goes past my elbow, which limits what I can do. From big things like driving, to making myself pretty with hair and make-up, to taking the cap off the toothpaste. I think (hope!) everything will be easier when I get a short cast on January 28th.

I stopped receiving Avastin in December because my kidneys needed a break. I now go in for blood work and see Dr. Kaplan every 6 weeks and I'll continue to get scans every 3 months. As I told Dr. Kaplan, "Its great that I won't have that strong drug in my system.            But, its also nerve wracking!"

I wasn't sure if I'd be able to have my January PET scan with a bulky cast and continued discomfort, but my wrist felt a little better (pre-surgery!) and I was able to have one in mid-January. There's a small spot on one lymph node, but it's unclear what it is, so for now it will be monitored. Everything else looked good. If Dr. Kaplan isn't worried, then neither am I.

I'll write again when I can use both hands!

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First, the good news:   My October PET/CT looked good.  Dr. Kaplan called with the results and I knew immediately from his tone that all was well.   I appreciate that he always says, "WE'RE doing great" and seems genuinely happy that I'm doing so well.

I still go to the clinic every other week for Avastin and take Tamoxifen every day.  Based on my recent kidney function test and other symptoms I'm having, it looks like my days of tolerating Avastin are coming to an end.   Dr. Kaplan can't predict if it will happen in one month or a few months, so I'll start getting tested more often.  In related news, I've been having sinus problems for a long time and when I finally mentioned it to Dr. Kaplan, he said that's probably another side effect of the Avastin.  They just keep coming.....

An update on my dental woes:  I had two lower teeth extracted followed by a bone graft to repair the damage caused by osteonecrosis.  The extractions and recovery went smoothly and I'm scheduled for an in depth follow up this month, including a CT scan of my jaw.  I also had an emergency root canal last month, and with no insurance left this year, that one REALLY hurt!

I've recently fallen in to the role of "cancer buddy".  Last month I was contacted by a fellow mom of twins who was diagnosed with early stage Breast Cancer (so early that she may not need chemo or radiation).  I don't know her well, but she's very sweet and brought meals to our family when I was first diagnosed.  I'm glad she reached out to me and was comfortable talking about the sadness and confusion she was feeling.  I remember those early days well, and she appreciated knowing that things do get better.

A friend's mom was diagnosed with lung cancer and although her experience has been different than mine, she still appreciates talking to someone who has walked a similar path.

And closer to home, a friend had a breast cancer scare.  At first, I was so afraid to say the wrong thing, that I didn't say much at all.  I wanted to be positive, but also respect her fears and emotions.  It was a reminder that sometimes its harder to know how to help those who are closest to you because your own emotions get intertwined with theirs. 

One "side effect" of hearing other people's cancer stories is being reminded that thanks to early detection, the women I know with breast cancer will have the word "cured" in their future. It frustrates me that after 2 1/2 years, I can't even say that I'm in remission (although my last PET/CT looked darn close).  There are many days that I still feel sad, but I try to remember how far I've come and how much better life is now, even compared to a year ago when I was still recovering from chemo.

For the last year or so, I've been trying to think of ways that I can use my knowledge and people skills to help others with cancer, as well as their family and friends.  My recent "cancer buddy" experiences have led me to think about it more seriously.  I know what my strengths are, I just need to figure out how and where to use them.   I just left a message for the social worker at the Swedish Cancer Institute and I'll also call Swedish's liaison to the American Cancer society.  I'll let you know where they lead me.

We hope you all have a wonderful Thanksgiving! 

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"Always something" has been my unwelcome mantra lately.   Here's an update on my port-a-cath removal and the latest news:

After two ultrasounds showed no infection and decreasing scar tissue at the port site, I finally heard the phrase "you're done" at the wound clinic.   Thank goodness.   The area is still red, but slowly healing. I appreciate not having a port (I'll get a new one eventually), but I feel bad that the nurses have a hard time finding a good vein for treatment.  It doesn't bother me -- lidocaine (similar to Novocain) is my friend.

After finishing at the wound clinic, it was time to make a decision about my dental work.  I've put it off mostly because of the cost but beyond that I wasn't happy with the two professional opinions I had received.  I heard a lot of "maybe", "might" and "it depends",  which made me doubt their experience with the dental side effects of chemo.

A month ago I noticed a rough spot on my gums, which turned out to be jaw necrosis.  A piece of bone had died, broken off and was making its way to the surface.   This is a very rare side effect of Zometa, the bone strengthener I received monthly for a year.  Dr. Kaplan was surprised and sad when I told him, because he's only seen this twice in his career and the first time was before the side effect was well understood.   Lucky me.

With this new development, I chose to go to one of the best oral surgeons in our area.  His fees are considerably higher than the other oral surgeons I saw, but as soon as I walked in the door, I knew I was in the right place.  The diagnostic equipment was impressive and Dr. Johnson quickly knew what he was looking at and how to proceed.  I didn't hear, "Maybe, I think" from him!   Once again, I've been blessed to find the right professional to take care of my needs.

He's concerned that a smaller piece of my upper jaw was affected earlier this year.   Its almost unheard on for that area to develop necrosis (again, lucky me). I'm not having symptoms and I'm managing to keep it clean thanks to using a water pik with prescription fluoride. Dr. Johnson is going to keep an eye on it, but for now we're going to let it go.

This week I"m going to have two lower teeth extracted and get a bone graft to repair some of the damage.  One interesting thing he'll do is take some blood, spin out the plasma and mix it with the bone graft material.   There's a high probability that I'll have difficulty healing and this should help.  

I'll probably be uncomfortable for a couple days, but hopefully the healing will go well and we'll decide the next step in 2-3 months.

The good news?  The dentist "prescribed" a few sips of red wine each night to help with blood flow to my jaw.  I can do that!

And finally...

We had a wonderful time at Cannon Beach, but I started feeling dizzy and nauseous on our last day.   This continued through the weekend, so I talked to Dr. Kaplan about it. After doing a couple of balance tests, he thinks it's most likely labryinthitis -- a swelling of the inner ear caused by bacteria or a virus.   There's been a significant increase in labryinthitis  in Washington and when I mentioned it to a friend in CA, she said her family has it, too.  Very odd.

To be safe, Dr. Kaplan sent me for a brain MRI (even less fun when you're dizzy).  The good news is, the scan was clean.  The bad news is, labryinthitis can take 2-6 weeks to clear up.  I'm already tired of feeling "car sick" all day, so the 2 week version sounds good to me.

I'm hoping there won't be any more medical/dental surprises this year.   I had a clean scan at the end of July, which is the most important thing, right?  I try to remember that as I get discouraged and feel sorry for myself over the continuing "post chemo" problems.   My usual pattern is to feel sorry for myself for a couple of days and then move on.  What else can I do?

In other news, I'm getting ready for the beginning of the school year and having all three kids in school full time. Its an exciting time, but also a time of transition and re-defining my role as a parent.   But, I can't think about that now.  Like Scarlett O'Hara, I'll think about it tomorrow.......

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Updates:

My latest scan results were good. The report says, "decreased activity in the liver, consistent with response to treatment", which means that the Avastin and Tamoxifen are continuing to work. Each scan has shown small changes, but they're significant enough to show up on the scan, which feels like a "win" to me.

I admitted to Dr. Kaplan that I was more worried than usual about the results because my cancer marker numbers have been creeping up. Earlier this year they were in the 30's (normal), then the 40's and the most recent test was 50. Darn it! The number isn't reflected in the scan, which is the most important thing. But it does add extra stress, which we don't need.

In other news.....

My port removal wasn't as easy as I thought it would be. The surgical site got infected so the stitches were removed and the area was cleaned and packed. Which hurt. A lot. I didn't think I'd need the prescription the doctor gave me for painkillers, but I sent James to the 24 hour pharmacy that night.

I was referred to a wound clinic because the area wasn't healing well. That was a tough day for me and I felt quite sorry for myself. I didn't want to add another medical appointment to my week, especially one that would likely continue for a few months. It was also discouraging to know that the wound wasn't healing well, probably due to lingering chemo side effects.

The wonderful nurses at Swedish gave me a lot of support (and hugs). I admitted to one that I had a difficult weekend and she said, "It's good that you acknowledged how you felt and got it out. That's why you're here today with a smile on your face". She made a good point that helped me through the rest of the week.

Even though I didn't want to go to the wound clinic, I quickly realized that I was in the right place. The doctor cleaned the area more thoroughly (ouch!), put in a different type of dressing (including medicinal honey) and took a culture to make sure the infection was gone. She wanted me to come in for dressing changes 3x/week but James learned how to do them, so I only go to the clinic once a week (thank you, James!). After 5 weeks, the area looks and feels better.

Initially the doctor was concerned that some calcifications above the wound would interfere with healing. They're a rare reaction to the trauma of the initial surgery and they've been there since I had the port placed 2 years ago. She sent a sample to the lab and it came back benign (rather than a medical name I can't remember), but just last week she said that one area is healing slowly and if that doesn't change, the calcifications may need to be surgically removed. The procedure is "involved", which sounds like a fancy word for "painful with a significant recovery time". I'm really hoping I get a break on this one!

The good news is that Dr. Kaplan isn't in a rush to have a new port put in. Avastin is a bio-therapy, not a chemo-therapy, so my veins can tolerate it for a while. That means a little more work for the nurses (my good veins can be hard to find), but I'm hoping to have some time without a wound and without a port.

As always, thank you for the continued love, prayers and support. Even though I'm doing better, we never forget how blessed we are to have such wonderful people in our life.

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