another day, another dose of chemo

lost a pound, so I guess the monster was hungry. Speaking of monster, my original idea was to dress up like that character in Alien, you know, the one where the monster came bursting out of the guy's stomach? I was told that was too disgusting......besides, I looked and looked and couldn't find it anywhere, dang it! So, I will be sitting on my front porch wrapped in blankets, with candy on one side for the trick or treaters and a cooler of beer for the parents (Trick or Beer!)

Chemo went ok, I was really tired afterwards, sat in my chair, woke up several times and kept falling back to sleep, so never went to bed and never ate. I am really tired today, but feel ok. got my hair cut and colored back to its "natural" red, it's amazing how a trip to the hairdresser can make you feel so much better. Good thing, because I really needed it. I was having a severe case of the guilts the last couple of days with lots of tears.

It is really really hard for me to ask for help, so when people found out about my diagnosis and asked what they could do, I was at a loss as to what to tell them. I was overwhelmed at the generosity, but my appetite is such that making meals would be a waste of time, I really don't want people to do my laundry, etc. The most helpful thing to me was to walk my dogs and clean out the kitty litter. Because of my suppressed immune system I can't really handle the kitty poop, and 2 dear friends (who have also been keeping my yard the best looking on the street) have been coming religiously to empty out the boxes, (with 4 cats, that's a lot of poop!). I also have 3 or 4 neighbors who have been walking my dogs for me. I like to walk my dogs, but sometimes I don't always feel up to it, even when I do, I have never known a dog to refuse a walk! Anyway, one of my neighbors led me to believe that the dog walking was overwhelming everyone and that they would have to curtail. I was devastated. Not because of the no more dog walking, but because I got the mistaken impression that people thought I was taking advantage of their generosity, which is absolutely not the case. So, now I have cancer and guilt too! Anyway, all straightened out, only one person is overwhelmed, not everyone, so I get the impression that the dogs will be getting a lot of walks!

So, to the people who have made offers of help, thank you so so much, it really does make a difference. but if you can't help, or have been helping but can't do it anymore, don't worry about it and don't feel guilty, it's OK! Trust me, prayers are as much appreciated as any casserole or dog walk.

So far so good

had chemo on Tuesday and so far no severe ill effects, hooray! I'm a little concerned about the increased pain I have been experiencing, but as long as the medications can control it I am ok. The other thing that is driving me nuts and therefore making me whine is my weight. jeez, I could take in the same amount 2 weeks in a row and gain one week and lose the other. And of course if I gain or stay the same the doctors are all happy. I am the same weight I was when I had to go on Weight Watchers for crying out loud! The problem is that cancer completely changes your metabolism so it's hard to tell how much to eat. So they tell me eat what I want and what I can. oh well, elastic waist bands for me, or maybe muumuus. Hard to shop for clothes for the cruise, Kohl's had a great sale, bought lots and lots of stuff for the cruise, who knows if it will fit when I go, maybe I should bring a roll of duct tape just in case?

Fun but unimportant things I need to live for

This is completely tongue in cheek so don't be all shocked, but there are some things happening in the future (besides the important stuff like my son) that I need to stick around for:

Nordstrom is coming to Cincinnati!
IKEA is coming for Cincinnati!
100th anniversary celebration of the Navy Nurse Corps
Premiere of the "Sex and the City" movie

there will be more, but haven't had enough coffee yet. Chemo today, yippee skippee

ttfn

thecdr

Happy Monday

It's been two weeks since I've had any chemo and I have enjoyed the break! I've had a chance to build up my strength, which in turn has relieved the fatigue, which has helped with the depression. In other words, I FEEL MUCH BETTER! The only catch is that while not on chemo the cancer has a chance to wreak havoc, and I've been experiencing more pain lately. That is the Catch-22 with cancer, sometimes the treatment is worse than the disease, and vice versa.

It was a beautiful weekend. Luis played in his soccer tournament, he played so well! Unfortunately they lost, but the kids played their hearts out. I got hold of blue and green hair paint, so they were all decked out in blue and green hair, it was hysterical.

Luis's godfather was visiting for the weekend as well and a very old and dear friend is coming from Tampa today. It's been wonderful seeing old friends, and I am so appreciative that they understand that I can't entertain. It's been a win-win, Luis gets to play with his "aunts" and "uncles" and I get time to just sit and talk with old friends.

So, back on chemo tomorrow, but much stronger and with a much better attitude.

ttfn!

The Commander

What do I tell my kids?

Having cancer is no picnic, let me tell you, especially when you have kids. How do I tell them? what do I do? and I am sure many other people go through similar things? How do I explain to my kids that their friend's mother is sick? What do I tell them?

I can only tell you my experiences, whether they are right or wrong or apply to your own child I can't tell you.

When I was first diagnosed it was imperative that we kept things as quiet as possible (more about privacy issues in another post). WE needed time to process, and I needed time to tell my son. Here is what I experienced and learned:

Kids are smarter than we give them credit for. I tried a gradual approach with Luis, we didn't mention the "C" word for quite some time. I explained about the chemo, that sometimes medicines make us feel worse before they make us better. But, as things happen, he overheard me on the phone one day and heard the two words, cancer and chemotherapy. He got very upset, because he knew that cancer was really bad. One of his former classmate's mother died of cancer a couple of years ago. So, the inevitable question came: "Mom, are you going to die?" This was clearly not the time to sugar coat with the pat answer "we will all die someday bs", but no 10 year old should have to shoulder the burden of hearing that his mother is dying, at least not yet. So, we had a frank talk about cancer, about my particular kind of cancer and that it WAS very bad, but this was why I was having the chemo, so I could stay here with him as long as possible. It was heartwrenching, tearful, terrible, but in a strange way a wonderful experience as we lay in my bed for hours crying and holding each other and telling each other how much we loved them.

Children need to know they will be safe. God bless my sister and her husband who will be Luis's guardian. He knows that he will be safe, that he will have a loving family and a place to live, that he won't lose his friends or his school or anything like that. Losing your mother is bad enough, but to lose your life as you know it is beyond bad.

"I will always be your mother". and he will always be my son. I can tell you there are some days that are pretty horrible, that both of us say hurtful things to each other in the heat of an argument. This is no picnic, that's for sure. Emotions can bring out the beauty and the ugly. But we always end up saying this to each other "I will always be your mother, you will always be my son. No matter where I am, this is the truth. I will always hold you in my heart, and you will always hold me in your heart" We thank God for every day we have with each other, and say at the end of each day "Today was a blessing."

It's ok to talk about it, in fact it is therapeutic. One day in school when the kids were asked if there was anything they would like to pray for, Luis got up and said "I want to pray for my mother, she has a disease called cancer." Heartwrenching yes, but the fact that he could talk about it is a very good thing.

Cancer is NOT catching. Your kids are going to be afraid, "if Luis's mom is sick, will I or you get sick too?" Everything I have read and experienced tells me that it is not only good, but necessary to talk about this with your kids. On the right hand side of the blog are links to some great websites that tell how to deal with kids. I urge you to read through them.

"Luis isn't acting the same" no kidding. this is a great time to teach kids about empathy and understanding. Anger is one of the most common reactions for kids, and acting out is the most common way of displaying it, my kid is no different. The bargaining and rationalization that goes on in a child's mind is unbelievable. "if I act this way then Aunt Peggy won't want me to live with her, if I can't live with her then my mom won't go away and leave me" To a rational mind that makes no sense, but in a 10 year old's mind it makes perfect sense.

Anyway, as I have a tendency to do I am rambling. All I can do is encourage you to talk to your kids and find out how they are doing. Read through the information in the links: "What's chemo Mommy?", and the information from the Dana Farber Institute and the NYU Cancer Institute. They are applicable not just to families with the disease, but for kids who know families, and some great stuff on how to deal with it in the class room.

ttfn
thecdr

Another day and I still have energy!

Prednisone is a wonderful drug! I know I can't stay on it forever, but between that and a 2 week break from chemo I am feeling great! Thank goodness, I was really starting to get down. One of my biggest fears is not being able to be a mother to my boy. I mean, they do all this talking about maintaining my quality of life and all that, but if I can't take care of my own son, what kind of quality is that? so, these last few days have been a godsend, I've been able to see things more clearly and not through a haze of fatigue.

Speaking of my son (actually, I'll go more in detail in a later post) I thought you might enjoy some pictures of our little "family". Besides Luis, who is 10, we have 2 dogs, 4 cats, a turtle and assorted guppies. I've lost count of them, they're worse than rabbits!

Luis is the love of my life even when he manages to push every single button I have.

Then we have the zoo

Bailey the Golden Retriever and Maggie the Heinz 57, we think mostly border collie. Both are VERY enthusiastic and great guard dogs, they will bark at anything that moves outside, including moths! Nevertheless, they love us unconditionally and provide much comfort.

Then we have Harvey who loves to eat and guard Luis's homework If there is a can or package being opened, Harvey is right there!

Next is Buddy, my baby boy who loves to sit on my chest and purr away, and is also an intrepid hunter of turtles!

Tony is the "cool" cat, and is very vocal. When he wants something he will let you know. His favorite thing to do is to "stalk" q tips in the waste basket in the bathroom! Oh, and nap....

Lastly is our newest addition and only female cat, Allie. She is definitely a prima donna and will let you know when she wants something, and won't stop until she gets it!

And, as you can imagine, we have enough flying fur to knit another animal! They keep us laughing, which we all need! The other day my oncologist was examining me and noted that it looked like I was going to lose my hair. I looked at him puzzled, then looked at my shirt, it was covered in dog and cat hair, not my own!!

ttfn

thecdr

What a difference a day makes!

One thing that people may not realize is the physical toll that the treatments can have on the person. To give you a slight idea, the classic cancer treatment protocol is called "slash, burn and poison" in other words, surgery, radiation and chemotherapy, any or all of which are no picnic. Remember whenever they go after the cancer cells, heathy cells are killed in the process too. This is why you see the side effects, hair loss, nausea and vomiting and other lovely GI upsets, rashes, etc etc, and above all EXTREME FATIGUE. I can not even begin to describe how tired you can get, where it takes a gargantuan effort just to brush your teeth. you are too tired to eat, and because you are so tired you get very depressed. This is what has been going on with me. Crying at the drop of a hat, getting short of breath and breaking into a sweat just from carrying a basket of laundry downstairs. So, despite the great news I got yesterday about the scan, I broke into tears. What good is keeping the cancer at bay if I am going to feel like this? Is this the best I am going to feel? If I feel this bad today, what am I going to feel like in 3 months?
Fortunately my oncologist (cancer doctor) understood and we did a review of all my meds (you wouldn't believe the amount of pills I swallow each day, but more about that in another post). One of the pills I take every day is a chemotherapy agent but it causes very significant side effects. Since it is experimental in my kind of cancer we decided to stop that. We also skipped my weekly chemo to give me a chance to get my strength back. Then the other thing to start me on is prednisone, a steroid. Steroids can boost your energy which in turn can boost the appetite. I lost 6 pounds in 4 days! So, I've had 2 doses of prednisone and I can already tell the difference! hooray! I actually walked the dogs around the block without getting short of breath! keep your fingers crossed that this continues! I won't be able to stay on steroids forever, but it may be that if I can just get a jump start I will be ok.
oh, before I forget, on the subject of food. Many people will offer to make their special dishes etc. While I (and I imagine others as well) so appreciate the offers, please don't be offended when I say no thanks. My appetite is so up and down, and Luis's picture is next to "picky eater" in the encyclopedia. You all are doing so much for me and trust me, I learned quite a while ago to ask for help!
one other thing, if you see my sister Peggy or my mom (or any of my family for that matter) give her a hug. Peggy is my rock, my "cancer secretary", sheriff of my cancer posse. She does all that while still being a special education teacher for autistic children (commuting to Dayton!) and, with her husband (another rock) raising 3 kids under the age of 8! I won't nominate her for sainthood, I know her too well ;-) but I couldn't do this without her. Heck, none of us could do this without our friends and family, so thanks to all of you well! (((((cyberhug)))))

Test results

Good news!

My tumor markers are down (this is a good thing) and the results of my CT scan show that not only has the cancer not spread, but some of the tumors are actually shrinking! This was definitely news I needed to hear because I have not been feeling well the last few weeks. One thing I have discovered about cancer is that it saps every last bit of energy you have. I never knew a person could get this tired! So, the doctor has stopped a couple of meds and put me on a few more with the hopes that I can start eating (yeah, so, I was on Weight Watchers before, now all they want me to do is eat! I still weigh the same, go figure) and get some more energy. I start back on chemo next week, 3 weeks on and one week off, I'm keeping my fingers crossed that this time off will give my body a chance to recover and I won't have the same side effects.

that's all for now

B

My first post, welcome to my world of the big "C"

Well, here it is, my first posting! The purpose of this blog is so that I can keep everyone up to date on my progress as I go through this journey. If you haven't heard by now, this past August I was diagnosed with Stage IV cholangiocarcinoma, otherwise known as cancer of the common bile duct. Yeah, it was a complete shock to me as well. I had been feeling crappy for about a week and kept telling myself "if I don't feel better tomorrow I'll call the doctor." Well, I would feel better in the morning, but by night I would feel bad again. I finally went to the doctor and told him that if I could just get over the dizzyness I would start feeling better. I didn't. The next day I was supposed to go out with my sister to Weight Watchers and I told her I couldn't go. Naturally she thought I was trying to sneak out of it, so she came over to yell at me. Instead of Weight Watchers we wound up in the ER. I'll do anything to keep from having to weigh in! ;-) Many scans, blood tests, and a biopsy later I found out I had cancer. And not just any cancer. My cancer is apparently very rare, only 1 out of 150-200,000 people get it. I prefer not to call it rare, I prefer the terms designer cancer, or exotic! The unfortunate thing is that by the time people find out they have it it is usually too late, which is true in my case as well. The cancer had already metastasized to the liver and lymph nodes. It is not operable and it is not curable, so we move on and pray for whatever God decides is right for me. I am receiving chemotherapy once a week with the hope that this will shrink or at least slow the growth of the cancer and keep me around as long as possible. I certainly have not given up, but I need to focus on the day to day, taking care of my son, making sure his future is secure no matter what, give me a quality of life that is worth it, oh, and I still work for a living! Chemo isn't too terribly bad, no picnic, that's for sure, but at least I still have my hair! I give thanks every day for the blessings I continue to receive. Every day is another day I have with my son and the rest of my family. I am so blessed by the friends and neighbors who have all pitched in to do everything from walking my dog, building a fence, even a simple hug and prayers. Every day I am here means that I too am a cancer survivor. Despite the statistics I don't plan on checking out anytime soon! Keep checking back in, I will post whenever I have news, scan results, etc and let you all know how things are going. Meanwhile, keep the prayers coming!

Barb

Cancer is a word, not a sentence (phrase borrowed from a friend!)