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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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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