Saturday, January 29, 2011

Happy News

That picture right there...that was how I felt after I spoke to my mom this doing the Snoopy dance.

These past couple of months have been challenging and full of bad news. The whole brain radiation was very difficult on Mom. She lost a lot of weight in the month that she was off chemo. Then, she needed a blood transfusion. Then, she got a bad result on her CT scan. In the month that she was off chemo (due to the radiation treatment), the cancer seemed to spread like wildfire. There was significant growth in her liver and stomach, she had new tumors in her pancreas.

So, the Dr. put her on yet another chemo regimen. As these things progress they get more and more toxic. Now she gets an IV infusion of Oxilaplatin and needs to take two pills, twice a day, of Xeloda. She goes one week and is off one week and started an on week the Monday before Christmas. And, Xeloda needs to be taken on a full stomach. Mom had been having trouble eating since the radiation (every Dr. appointment measured a loss of 2-5 pounds). So, every breakfast and dinner was filled with anxiety and tentative eating and usually having to try several different things before she could get something to stay down.

Almost every moment of the holidays, I worried that this would be the last Thanksgiving and Christmas I would get to spend with my Mom. Every time I saw her, she was weaker...not of mind but of body. And, maybe, just maybe, a little spirit. It's got to be hard when you feel like you're wasting away. Add getting violently ill several times a day...just the thought of it brings me to my knees.

So, she was on her 2nd week of this new chemo when we all went to St. Croix to celebrate my Aunt and Uncle's 50th wedding anniversary. When my parents originally booked their tickets, Mom had to come back on the 9th because she was scheduled to have chemo on the 10th. When that changed, and she wasn't having chemo again until the 17th, I tried to convince her to stay in St. Croix longer. I think that appealed to her but Dad was worried that the new chemo was going to make her sick and he didn't want to be that far from her doctors if she had a bad reaction. So, they planned to come home Sunday night with the rest of us.

But...when I got down there on Thursday (they had been down since Tuesday), she looked practically like another person. She hadn't gotten sick since she arrived in St. Croix; she was able to eat a lot more and her appetite had returned; she didn't have that deathly pallor she'd been sporting for a month or two. (And, this was an ON week for chemo. She had chemo via IV on the 3rd and started the Xeloda then too. She was taking four of those pills a day while she was down there.) Do not let anyone tell you that the sun is bad for you. Yes, you need to cover up. And, you should always have sunblock on. But, oh my, I am convinced that being in the sun and warm weather was responsible for her big turnaround. So, I made it my mission to convince them to stay longer. Finally on Sunday (about a half hour before they were to check out), Mom decided to stay until Thursday. They ended up leaving Friday morning (I changed their flight again because I didn't want them standed in the Puerto Rico airport due to the snowstorm).

So, now Mom's had 3 treatments (over a 5 week period) of this new chemo regimen (1 course) and was scheduled to have a CT yesterday. It was postponed until this afternoon. She has her regular appointment for chemo on Monday and we expected to hear the results then. But, her Dr. called late this afternoon. I am sure that her heart stopped when he called her. I know mine did when she called to tell me at 4 today. She said, Dr. B. called to tell me the CT results. And boom. Heart stoppage. I thought for sure it was going to be, the chemo's not working, we really should stop treatment. I almost couldn't concentrate on what she was saying. And, actually made her repeat it.

All the tumors in the liver, pancreas, stomach, esophagus, show a marked decrease in size. No new growths.

We'll get the full report on Monday, but there it is. Thank God. This nasty, awful, nightmarish chemo is working.

Everyone, do the Snoopy Dance. I know I am.

Wednesday, December 8, 2010

Feeling Emotional about Elizabeth Edwards

I have to admit that when Elizabeth and John Edwards announced the recurrence, with mets to the bone, of her breast cancer, I was one who said, why doesn't he just drop out? I railed that they had young children and should be focused on them. Not campaigning.

But who am I to judge? I think it was easy for me to sit in the comfort of my own home and think I knew what was best for her and her family. I know for a fact that my mom does not want to be treated like an invalid before she must. And, she is determined to have as full a life as she can while she still can. I imagine Elizabeth thought much the same. Back when she still thought her husband was an honorable man, even if she did have questions, I guess she thought he would have been what was best for our country. And, perhaps, she thought getting him elected could be her legacy.

I was so sad when I heard about her death yesterday. It hit me much harder than I ever would have expected. When I think about her children, I break down.
There are lessons to be learned in how Elizabeth handled her disease. She treated each day as a gift. I understand that she was writing a letter of life lessons to her children during these past three years. Good for her. I am certain her children will treasure it.

Dignity. Courage. Grace. All under the ever watchful eye and glare of the media. We can all learn from that.

Rest in peace, Elizabeth.

Thursday, November 25, 2010

Radiation done...Chemo to Restart next week

It took 10 days of radiation to do what 10 months of chemo didn't do. Make my mom look sick. When I saw my mom this weekend, the only thing I thought was...Damn. She looks like she's sick. And, the damn radiation makes her sick. Friday and Saturday were bad days. She really couldn't keep any food down. And, she's losing her hair. We're shaving it this weekend. I think. It sucks.

But...we're a year into this thing and today is Thanksgiving. Mom's hosting dinner - it was originally supposed to be 10 people but somehow we got up to 20. I'm so thankful for my whole family and for this year with Mom.

Sunday, November 7, 2010

Whole Brain Radiation last post was about the results we got from the last MRI Mom had. Before the appointment with the radiation oncologist, Mom was almost certain that she didn't want whole brain radiation.

Well...after her meeting with the Doc, she changed her mind. I was a little worried that the Doc pressured her into having it. But she says no. That while she did go into the appointment thinking that she absolutely did not want whole brain radiation, she agreed that she would listen to the Doc. I think part of the reason that she decided to get it is that she trusts and likes this Dr. She was able to allay many of Mom's fears about her quality of life after the radiation. Biggest side effects will be short term memory loss - permanent in all likelihood - and hair loss. Also, let's throw in some more nausea.

Mom had her final two chemo sessions in the last two weeks and got fitted for her head mask last Wednesday. She starts radiation tomorrow. She'll have 10 treatments and then be off chemo for another two (or so) weeks after that. No chemo until December 6, at the earliest. So, while we treat the brain, that pesky met in the liver will have some time to grow.

I wish I had some of my Mom's strength and grace. She's the one who's sick but I'm the one who's pissed. And, scared.

I'm asking for your continued prayers for Mom. That she handles the radiation well. That it does what it's supposed to do and gets rid of the recurrence in her brain. That the damn liver tumor doesn't grow while she can't have chemo. That the side effects of the radiation aren't debilitating. That her daughter is able to hide her fear and anger.

Thanks to all of you, I couldn't have made it through this last year without you. Heart thingy.

Tuesday, October 19, 2010

Test Results...

I went to LI to visit Mom this weekend...we had a fantastic time. Saturday was spent doing our album for our Ireland trip on Shutterfly, then we went to see The Social Network (GREAT movie!), then shopping! And, since it was for boots (and not clothes) it was quite successful. Then, we went to Baby Bro's restaurant for dinner with Big Bro, SIL and my two fabulous nephews. Then, Sunday I had a great time at Baby Bro's restaurant watching the Jets slaughter the Broncos (ok, maybe not slaughter, but whatever, a win's a win).

Then, today came. I took today off work because I wanted to go to the Doc with Mom and Dad for the CT/MRI results. Bit of a communication problem at the premier cancer treatment center and Mom received a call this morning - BEFORE going to the Doc for the results - from a secretary wanting to schedule an appointment with the radiologist. Shouldn't happen.

Anyway, we had a heads up that the MRI results were disappointing. Found out at the appointment that the small spot that was seen on the last MRI was now several spots and there was additional swelling where her surgery was last year. Not good. I guess we'll hear more on Thursday about treatment options but it sucks. Also, the CT results were ok..not great, not awful...but, the liver tumor is a little bigger than it was the last time. For now, the Doc isn't changing her chemo regimen - she's going to stay on the Taxol - but it doesn't seem to be as effective. Plus, she'll go off the chemo while she's undergoing radiation for the brain tumors.

Mom is worried that this is the beginning of the end...I hated typing that last sentence but it's true. If the recommendation is full brain radiation, she's not going to let them do it because, in her words, she doesn't want to be a babbling idiot. She's trying to convince me that I don't want that either. I told her I'm not sure about that. I just want her around. As long as she's not in pain, I wouldn't care if she didn't know who I was.

Because my mom is a nurse, we used to talk all the time about what we would want if, God forbid, something awful happened to either of us. We agreed - no heroic measures. We wanted to die with dignity, blah, blah, blah. Do I still believe that now? For me, sure. But for my mom? When the very real possibility is staring me in the face every day now? When additional treatment may rob her of her speech, her memory, her ability to recognize us, her ability to take care of herself? But, could give her an additional 6 months or a year? Hell, no. I want EVERYTHING done.

But, this is her life. And, no matter what she decides, no matter what, I will support her. And, I will try to hide my pain from her. Because that's what she deserves. Because I promised her a long time ago - before she was ever sick - back when these promises should be made - when cooler heads prevail - when it seemed she was going to live forever - that I would respect her decisions and the way she wants to live and to die.

Sunday, October 3, 2010

Feeling Kinda Crappy...Me and Mom

My mother cries every time I speak to her on the phone (and we talk almost every day). Every single time. Sometimes it's for no reason at all. Sometimes it's because she just feels like hell. But sometimes, just sometimes, it's because of something that I've done.

My parents went to Vegas last weekend - they saw Terry Fator and Cher. And, while she's telling me about the Cher show, she's telling me that Cher used to be married to Sonny Bono. And how they used to have a show. And then, after they got divorced, they still had a show. Now, I KNOW all of this. About Cher - no idea where Mom's going with this story. But, the truth is she's babbling a little (thank you, steroids!), and I'm at work. I don't have an unlimited of time here. (Yes, these are all excuses for what comes next.) So, I say something like, yes I know. And she gets all upset. Because she is sure she did not tell me this story - she only got home from Vegas late the night before. (She hates the "chemo brain" that makes her repeat things that she already has told someone, but even more than that she hates being told that this is repeated information. And, I know this. But most times, I can't help myself. It's hard to hear the same things over and over again without saying that you already heard this.)

Anyway, as she is getting upset, I'm trying to explain that I know this because I know this. The Sonny & Cher stuff isn't exactly top secret. And, the shows happened during my childhood. I had a Sonny & Cher stage and the dolls for crying out loud! So, it degenerates from there, she is upset that I'm interrupting her story with all kinds of "I knows" and I'm upset because I am yet again upsetting her. We eventually hang up, with Mom hysterical crying.

So, Mom is right on the emotional edge these days. Mostly, I think, because she's had really bad nausea for about 3 weeks. I guess we've been lucky to date because while there's been nausea, she's been able to deal. And, now, she really can't. The anti-emetics have worse side effects than the actual nausea so she refuses to take them. With the result that she feels like crap almost all the time. I'm pretty sure it's because of the cumulative effect of chemo (did you realize that I picked up my M.D. over the past year?). And, she hasn't had a break. Nonstop chemo since January.

But, I think Mom thinks it's because the cancer has spread more. And, that scares her. Who knows. She goes for her CT/MRIs the week of the 11th and we'll find out on the 18th how the cancer's doing.

Moral of my story for me...try to act like everything my Mom tells me is brand new information. The last thing she needs is for me to make her feel worse than she already does.

Thursday, August 26, 2010

One Year...

Next weekend is Labor Day weekend. Labor Day weekend last year is when I found out that my mom had not been feeling well for six weeks and when Mom finally decided to see a Dr. about the headaches, nausea and balance issues that were getting progressively worse. (Nurses make the worst patients!) It was a few days after that when we found out that she had several tumors in her brain and received her original diagnosis of kidney cancer with mets to the brain. And that was the beginning of this scary journey.

After my mom's cancer diagnosis, we had no idea where we would be in a year. We were all terrified that she wasn't going to be around and that it was going to be an awful, scary, harrowing year. While it has been scary at times (especially those times right before her scan results come back), it's also been wonderful. And, something of a miracle to us.

We have had a year of Mom. A year of Mom's original tumors going away. Yes, a new one appeared, but it's smaller now than it originally was. A year of Mom in fairly decent health. Well, other than those cancers. ;) A year of Mom not suffering too many side effects from the poison they pump into her every week. A year of honest talks about how she wants to live her life with cancer. A year of realizing that no one knows how much time they have and everyone should be grateful for the time they're here.

And...most recently...Mom, T3 and I had a wonderful week in Ireland together. When she was diagnosed, she wasn't sure she'd be able to come with us on our spin around the old country. But she was determined that we would go - no matter what. We went and she came and T3 spent a special week with his Aunt and his Memaw. I've attached a picture of us at Newark waiting for our plane. Look how amazing and beautiful my Mom is.