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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Always something.......

When I saw Dr. Kaplan three weeks ago, I mentioned that I'd been having some tightness in my chest and thought it might be anxiety. He said it could be but he wanted to rule out a couple of other things, including a blood clot (which can be a side effect of tamoxifen) and a tumor in my lung. WHAT???   I think I stopped breathing for a second because the possibility of a new tumor hadn't crossed my mind.  I immediately said, "No, I had a clean PET scan two months ago. That's not possible".  As if I knew better than he did!  I quickly realized that anything was possible, which was a reality check I wasn't expecting that day. He said he thought I was fine, but he needs to take all of my symptoms seriously, no matter how mild.   And I think we all appreciate that! 

The CT was clear and I'm feeling better. We're still not 100% sure what was going on. It could have been anxiety or perhaps asthma (I now have an inhaler). 

This experience reminded me of a friend of a friend who lived in a small town (in another state). She had battled breast cancer and was in remission.  When she developed a chronic cough and other symptoms, her regular doctor didn't think it was even worth getting a chest x-ray.   By the time her cancer was found,  it had progressed significantly and the treatments weren't successful.  I mention this because although I was concerned about my test results, it was comforting to remember that Dr. Kaplan won't let that happen to me.

I also decided to finally ask Dr. Kaplan a question that had been on my mind for a while:  "Am I in remission or not?"  My PET scans have been clean, but the CT has continued to show some activity in my liver. There are two possibilities. The first is that I'm in remission and the activity that shows up is scar tissue forming, or the regeneration of damaged liver tissue. The second is that the PET scan can miss trace amounts of cancer (which is why it's done in conjunction with a CT). If that's the case, then I'm in the "best partial remission you can be in with a very small amount of active disease". That seems like a long explanation when someone asks me how I'm doing, so I usually say, "I'm doing pretty well". I'd prefer to say I'm cancer free, but I'm happy to be so close.

When I went in for treatment last week (March 12th), the nurse said she couldn't access my port because the skin around it looked necrotic. Great. Dr. Kaplan had mentioned that scar tissue was forming and at some point the port would need to be moved or changed. I guess now is the time (specifically, March 16th). It's easier to take it out than to put it in, and I'll probably only be sore for a day or so. The person who scheduled the appointment said I'll be lightly sedated and "loopy in a good way". I'll let you know what that means......

The safest thing to do is let my body and skin heal before placing a new port. It would be easier to replace it at the same time and I'm not looking forward to another procedure in 6-8 weeks, but I am looking forward to having a break. My system has never liked the port and I was often itchy and uncomfortable. I don't know if it will be any different with a new one, but having it out for even a short time sounds good to me!   In the meantime, I'll get Avastin through a vein.  I can't do that long term, but for now it's fine. 

I'll have another scan in early April. Hopefully, nothing else will happen before then! 

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My latest scan looked great -- that's 4 in a row! I'm still hoping for 40......

The most stubborn tumor in my liver (the only active area) looks better and everything else is stable.

I was surprised that my dental problems showed up on the CT. Some radiologists only comment on tumor size and activity, others also comment on how my bones are healing and some list everything they see. The final recommendation on this report is, "Continue current treatment and see a periodonitist". That was new!

Dr. Kaplan was pleased with the results and said he has a good feeling about how things are going. I'm just guessing, but his "good feeling" might be based on the liver tumor continuing to change, even though I haven't had intense chemo for 8 months. It looks like the Tamoxifen is working its magic.

I admitted to him that I still get a little nervous before each scan but I'll be really worried in May 2013, because Tamoxifen works an average of two years. He said, "You never know. I've seen it work for a lot longer and this morning I saw a patient who was diagnosed with breast cancer and had extensive liver tumors. We've had to change medications a couple of times but it's seven years later and she's doing great."

It's never far from my mind that each scan could be "THE SCAN" that shows a negative change, but most of the time I realize that anything is possible. Not only from the grace of God (keep those prayers coming!) but medical science supports that as well. I'll take it all.

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Happy New Year! We continue to be grateful for the support we've received this year. All of you have a special place in our hearts and we never forget everything that has been done for us.

I am now 7 months post-chemo and dealing with the more long lasting side effects. As I mentioned in a previous post, the Avastin I receive every two weeks has caused my blood pressure to go up, so I'm on a low dose of blood pressure medication. There are also signs that my kidneys are starting to be affected. It's possible to stay at this stage for a long time but it could also get worse, so a new monthly test has been added to my routine.

Although the FDA no longer approves Avastin for breast cancer, Dr. Kaplan still strongly believes in it and thinks the statistics used to discredit it are misleading. Our insurance is still covering it, but we check with them frequently.

I'm not sure what "Plan B" will be if I stop receiving Avastin. At the very least, I'll continue taking Tamoxifen, which is a miracle drug for some patients. Why not me?

Here is a summary of my current side effects and an update on the old ones:

Hair: My hair is growing back and I've even had two haircuts. I don't like wearing my hair this short, and it's not as thick as it used to be, but it's very freeing not to wear a wig (although it takes me longer to get ready to go anywhere). My eyebrows and eyelashes are slowly coming back, too.

Eyes: The problems I was having with tearing went away pretty quickly and my vision has improved.

Nose: I have one stubborn sore that won't heal and drives me crazy! I still sneeze a lot, but not as much as I used to.

Dental: Over the last few months I've had significant chemo-related dental problems. It's been frustrating because in addition to the discomfort, time and money, I'm at risk for something called "jaw necrosis" (which is as bad as it sounds). Unfortunately, that means that the most effective treatment isn't an option. I'll be seeing a periodontist and an oral surgeon because they're quite knowledgeable about the side effects of chemotherapy, but that doesn't mean there will be an easy answer.  My regular dentist thought she saw jaw necrosis on an x-ray, which had me freaked out for a couple of days (it usually gets worse and there's nothing you can do about it), but the endodontist said that although there has been some bone loss, it's not necrosis. I was quite relieved. Amazing what I think of as "good news" these days!

Hands/Feet: My neuropathy and nail problems have decreased significantly, although my nails are still brittle.

Taste: I still have some difficulty with certain tastes and textures, but I've seen improvement there, too.

Arthritis/stiffness: My neck and back are still stiff, but added to that is wrist, finger, hip, leg and ankle pain. At this point it's not constant or bad enough to warrant medication.

Port-a-Cath: In addition to the redness and itching I frequently experience, Dr. Kaplan is starting to be concerned about the scar tissue developing on the skin that surrounds the port-a-cath (which looks like a big button under my skin). Every time I go to the clinic I get a shot to numb the area and the treatment needle is placed next to that. Over time, this has resulted in a lot of needle pokes in a small area. If the scarring gets worse I'll need to have the port moved and placed under healthy skin. That's minor outpatient surgery, but I'm still hoping to avoid it. For now, I put numbing cream on the area before I go to the clinic (which doesn't work as well as the shot but it helps) and I ask the nurses to try to find a new place to put the needle. It's a small area to work with, but so far they've been able to do it.

Tamoxifen/Hormones: I'm still struggling with the hormone/mood swing side effect of tamoxifen. I think the mega doses of Omega 3's/Vitamin D/Vitamin B complex have taken the edge off but if there's any added stress in my day, I have trouble managing it. Just ask my kids. Something I haven't mentioned is that taking tamoxifen makes it easy to gain weight (WHAT? Where did this come from?) and harder to lose it. I've been exercising more but I need to get serious about a long term plan.

Chemo Brain: I still have word finding difficulties and often lose my train of thought. When I'm helping in the boys' classroom, I sometimes have trouble processing the teacher's directions. I feel like saying, "I have a master's degree! I used to be good at this stuff - it"s the chemo!" I'm feeling less and less organized and trying to compensate by writing more and more lists. This helps, but I still don't feel like myself. I'm doing better in so many ways, but it's hard to feel normal when my brain isn't working like it used to.

Fatigue: My energy is much better than it was 7 months ago but I still get tired more easily and if I have a busy day or two, I'll "crash" with a headache, nausea and general aches and pains. No surprise -- that happened a couple of times during the busy month of December.

My next scan is scheduled for the second week of January and I should get the results on the 16th. I'll write another update then.

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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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