Following Up

Sorry it has taken awhile for me to post again. It's been a bit of a whirlwind.

Let's start with the good news first: the brain MRI showed that my brain is doing great! So, that was a giant relief!

On the other hand, the PET/CT did not have such good news. Again, there was some progression and some new little spots. Argh! My family and I were so disappointed. At first, my doctor was talking about switching me back to another chemo I'd had in the beginning. However, after talking with her, she also recommended I switch to hormone therapy and a biologic. This would be the oral drugs Aromasin and Afinitor. I'd taken these early this year for less than a week when all that craziness happened with spots in my lungs that turned out to be related to my having the flu. Anyway, I've been happily taking Aromasin and Afinitor for about a week now and each day am gaining some strength back and feeling more human again.

That last chemo really took a lot out of me. I was pretty much in bed full time and was struggling to even eat. It was pretty brutal for me, though I hear that some people just sail through. Everyone is different and so treatment experiences really vary. It was really, really hard and I am SO happy to be on a treatment that is not debilitating anymore. My family and friends have been tremendous support during this really difficult time and there are no words to express how grateful I am and how much I appreciate them.

In the last week or so, I also met with a doctor of Chinese Herbal Medicine. I'll report more on that once I get going on my herbs, which I am expecting to be delivered today.

I'm also getting my tumor tissue analyzed by a company that will look at the cells and be able to recommend biological therapies that are consistent with the receptors of those cells. Let's hope there is a big list of possibilities.

Again, I am so thankful for everyone's thoughts and prayers.
I hope that when you think of me, you imagine me completely healthy, active and happy. That's what I pray for in my future. I can't say thank you enough for all of your support. The cards, texts, email, voicemails and phone calls are always a bright part of my day. I am so grateful for my incredible support system and feel so very blessed to be here every day!!!

Scanxiety

Tomorrow is a double day. On the one hand it is Marchus' and my wedding anniversary. I feel so blessed to be married to such an loving and supportive husband, and that is definitely worth celebrating. O. The other hard, tomorrow morning, I will have a brain MRI, as well as a PET/CT scan. After the last one, I can't help but have some fear and anxiety going on. At the same time, I have been praying and praying for my health and future. I hope that you will pray for me too - for scan results that show my health and well being. I will post again when we have results. But for now, prayers for perfect health are welcome and appreciated.
Thank you so very much.

Jumping in... Again...

So, we met with my oncologist and discussed a whole load of choices. Who knew there were so many treatment options?! She said that we wouldn't run out of options, it's more what each person's body can handle - which was good news to me cuz I'm planning on keeping my body healthy and strong!

So, after much discussion, I began on a clinical trial of Eribulin (which is fairly new and comes from sea sponges) and Cytoxan (which has been around for decades). Basically, I get both one week, Eribulin only the next week and then a week off. Then repeat. I'll have a scan in early September to check on how it's going (around the same time as my brain MRI. We started last Tuesday, and it knocked me down a bit for a few days, but my strength is gradually rebounding and I'm happy about that - elated actually! The fear and anxiety of how any new treatment will affect me is probably almost as bad as the treatment itself. Maybe someday I'll get used to it and be more able to roll with all the unknowns, but for now it makes me into a total stress case.

I'm lucky to be treated at UCSF and be involved in clinical trials. These are not the trials where they just throw stuff at you and see if it works. These are more set up for data collection for drugs or drug combinations that they have shown to be effective, but just need a broader statistical basis to qualify for FDA approval, which is a long, arduous process. So, it's great to have the opportunity to participate in cutting edge medical treatment. I'm banking on being a further reflection of their prior success. :)

Otherwise, we had an incredible celebration of my sister-in-law's and my birthday, as well as my in-laws 50th anniversary last weekend. It felt amazing to me to be surrounded by the love of my family and my dearest friends. It truly buoyed my spirits in a way I didn't expect. I can't thank everyone enough for such an incredible experience. I haven't danced that much since our wedding!!

After chemo this week, I'll get to spend some time with my mom, sister, niece and nephew and road trip it down to Southern California, where the boys and I will spend some time at the beach with my dad and Beth, my cousin and her family. Should be a great way to round out the summer with some relaxing family time.

Despite the roller coaster of the last two weeks (which feels like years), I know every day that I am so fortunate to live the life I live... I am learning more and more how to appreciate each moment, and as cliche as all this may sound, I am blessed to have my eyes opened to the beauty and love that greets us with each new day. Enjoy it!!!

Scan Results

Well, sometimes you get the results you want and, sometimes you don’t. This was one of those times when the scan results were disappointing, surprising, shocking and a whole lot of other things. Definitely NOT what I wanted to hear.

I was just so enjoying this summer with my family. We’ve fallen into a good groove together enjoying each other’s company and doing fun things. And now, we have to shift gears again and move into heavy duty fighting mode.

The scan showed some progression of spots that were already there, reawakening of spots that showed up previously but had disappeared, and then a few new ones just to round it out. Nothing is very big or is threatening an important organ or anything, it’s just that they are there and that there are more of them and they are active that is really upsetting.

Marchus has been wonderful – truly could not be more supportive. He’s amazing that he always knows the right thing to say. I’m really thankful for him.

So, I will post again once I know what’s going on with my treatment. I am so thankful for everyone’s prayers and positive thoughts. Please keep them coming since my fight is gearing up once again. Thank you.

A Happy Summer

Since they changed my chemo to Doxil in May, I’ve been feeling tremendously better. I’ve been able to be much more active and have enjoyed some really fun time with my family! This has been a great summer so far with family and friends visiting, as well as having the opportunity to travel a little bit to visit them. It’s really been heartwarming to be able to spend time with the people I love without feeling like I need them to look after me.

The kids and I just got back from a week visiting my sister and her family. We had a great time and my Dad and Beth arrived for the last couple days of our visit which made it extra special. I joyfully celebrated my 45th, yes, 45th, birthday while we were there. Feeling so blessed to have the gift of getting older. Funny how your perspective changes when dealing with life altering challenges.

I’ve officially retired from work. Well, disability retired, but we’ll call it retired. It’s weird to not have going to work and doing work as a strong presence in my life. I can’t remember not having the stress of work. I wondered how I’d fill my time, but it seems to be pretty easy. If I’m feeling good, I’ve always got something to do. I realized that we’ve lived in our house for 5 years and I never got it organized. May have something to do with having a baby a month after we moved in and then being diagnosed a year and a half later, while working full time. So, now’s my opportunity!!

I have a PET/CT scan next Tuesday, July 30, as well as an ECHO of my heart to see how it is coping with the chemo. I could use your prayers and good thoughts for fantastic results. I’m doing so well right now, I am hopeful that this track will continue.

Thanks so much for all of your support, prayers and love. It means the world to me. Hope everyone is having a fantastic summer!!!

A Healthy Brain Makes Me HAPPY!

Well, I was doing really well anxiety-wise until Sunday, and then it all flooded in like the dam had broken. So, I was actually feeling some relief when Monday finally came and I was heading back into the tube for the brain MRI. I kept my eyes closed the whole time this time to avoid the claustrophobia. Usually, when you are finished, they usher you quickly back out to the nurse in the prep area. This time, as I stopped to pick up my hat off a table, I noticed my BRAIN on the computer screen. I asked the tech if that was, in fact, my brain. Oh yes, he said and he scrolled through the image from the front of my face to the back of my head, and then quickly from the top of my head to the bottom. Now, I'm no radiologist, but I didn't see any glaring spots anywhere and that allowed me to breathe a little easier. I don't think they are supposed to do that, and they never have before, but I sure appreciated it!

Later Monday night, I got a text from my oncologist that the MRI looked great! As you might imagine, the flood of emotions was tremendous. My mom and I quickly got on the phone to call close family members and send out some text messages to get the word out. I don't think it really sunk in until the next morning when I awoke at 4am and couldn't get back to sleep because my mind was reeling - this time, in a good way. :)

So, the MRI report says that they can see only 3 of the original 12 spots, but those 3 spots are shrinking. These may be the original 3 that started all of this by showing up on a PET scan in January. I'm really happy that they are on their way out and that nothing new showed up. That was actually my biggest worry - and having sinus issues, related headaches and a few spins of vertigo recently didn't help relieve those worries. But, now that I know there is nothing to worry about, all of those things are going away as well. Irony, huh?

In any case, now we can plan our summer. The kids are out of school on Friday, and Marchus and I are going to sit down with a calendar and map it all out - keeping in mind my chemo schedule etc. I feel like my road back to health is getting clearer and with the support of my family and friends, I will get there. I'm on my way! Now, I just have to get rid of those other spots, which is next.

I really cannot thank everyone enough for their thoughts, prayers, good wishes and tremendous support. Knowing that each of you is out there cheering me on bolsters my spirit and warms my heart. Thank you so much! As I promised before, I'll continue posting more often...

The Next Chapter

I know, it’s been a very long while since I posted and I’ve made a resolution to do this more often. So check back and bug me if I’m not posting enough.

Well, it’s been another rocky ride to start 2013, and I’m finally starting to get my feet under me again. In January, I had a scan that showed that the liver lesion was back in action and there was another one that sprouted near my liver. To add to this, there was some kind of sheet-like cancer around my intestines and a couple spots on my spine. And just to make sure I was getting the message, there were 12 spots in my brain.

But no need to panic! In February, I had Gamma Knife radiation on the spots on my brain, which showed them all shrinking up in March. I have another brain MRI on Monday, June 3 and am holding strong prayers that it turns out with good results!

Unfortunately, when I had the Gamma Knife procedure, I was also getting that terrible flu and ended up with a 104 degree fever that got me sent from Gamma Knife to the ER, where they ran a bunch of tests, diagnosed me with the flu and had concerns that I might have fungal pneumonia. This meant we got to follow the night in the ER with a bronchoscopy a couple days later – which turned up nothing. And I got to take heavy duty anti-fungal medication for a month, which contributed to my month in bed with the flu. It was brutal.

Meanwhile, my doctor had changed my treatment and I had to go off of it because of the spots in my lungs that they thought were the fungal pneumonia. Turns out they don’t do CT scans on people who have the flu and it was probably just what happens in people’s lungs when they have the flue. When we went back for the scan to check out my lungs and everything else, where the lungs came out clear (thankfully), there was a bit more going on in the liver and intestine area. So, it was onto weekly chemo of Epirubicin, which I started in mid March and which sent me back to bed feeling awful for weeks and made my hair head south again.

Thankfully, my last scan at the end of April showed that things were calming down in my abdomen and I was switched to a different chemo, Doxil, which is every 4 weeks. This is a much more tolerable treatment and I’m actually feeling good enough now to get out and about. The biggest side effect is fatigue, but compared to where I’ve been, it’s nothing!

Through all of this, I’ve had a lot of time to think, and think, and think some more. Despite what seems to be pretty terrible news, which I realized as I typed it out, I’m feeling really positive about my future. I am planning to live a very long time – to be 93, to be exact. And I’m planning to be healthy in the process too. I am going to be here to raise my kids and to play with my grandchildren. I just know in my heart that that is true. One way or another, I will get through this. I’ve added some new dietary tools and am still doing acupuncture and reiki. My husband and family have been sweet, supportive and full of love, as have my friends, and that makes me really happy. It’s not that I haven’t had my dark moments, but that I am choosing to look in a positive direction.

So, despite having occasional anxiety, fear, worry and all those things, I also see possibility and healing in my future.

Please do keep me in your thoughts and prayers for good health and thank you for your support!! I’ll post again soon.