Where have I been

my sincerest apologies for not posting in so long, no real excuse other than the obvious. I am pretty much stuck to my bed and have lost an incredible amount of weight since this whole thing started. I have to have a full time home health aide as well as a family member with me at all time. Sometimes I resent the invasion of my privacy but mostly I treasure the time with my family, talking about old times and learning about my family. I had a fun time this morning with my mom, talking about the crazy hair styles of the 40s and her dating. Luis came over today as well, had a great time with him, he is growing up so fast, I am so proud of him!
Well, that is it for now, but I promise I will post more often!

Happy Birthday! Happy Birthday! Happy Birthday!

Today in our family we celebrate 3 birthdays in one day! So, Happy Birthday to Mark, Arthur, and Patrick were all born on the same day in june. Big family dinner at Mom and Dad's. I will be there in spirit, of course.

A great big THANK YOU to my Aunt Jessie and Cousin Ed for the yummy chocolates! Lindt sent by FEDEX no less! I love candy that comes with instructions inside, lol.

Sunday

The way I look at things, Hospice isn't a matter of dying but a matter of controlling my life as long as I can. I am at peace, more so now than I have been in a long while. Stopping chemo was a personal choice but one that I am at peace with. I have 24 hour care because I am pretty much stuck to my bed or a wheel chair. especially since I sprained my ankle trying to go to the bathroom by myself! My pain is tolerable and they provide me with anything I need. The hardest part was realizing that I could no longer care for my son, so he is now living with my sister (his guardian). Fortunately she just lives down the street and I see him almost every day. She has been an absolute godsend, has have my other relatives, friends and neighbors, but Peggy is special and I thank God everyday for having her as my ally, my rock, my sister, my caregiver and my good companion.
I am having problems lately with my short term memory, I will be mid sentence and stop, not remembering what the heck I was talking about. It is very frustrating for someone who is as talkative as I am!
That's it for now, I find that I get very tired easily so I don't stay on the computer too long. I'll see you next time, in the meantime keep me in your prayers

The latest

Well, it's been quite a while, but a lot has been happening, so I will try to summarize. I had my transfusion and then got pretty sick over the weekend. Went to the Emergency room and found out my blood count was down to 16. I was admitted to the hospital and given multiple transfusions. Unfortunately no one could find out a cause of the bleeding. After I was discharged they found that my ammonia level was very high then still higher a week later. The bottom line is that there is nothing more that can be done and my liver has shut down. So, no more chemo, no more treatments. A feww days later I became extremely ill and Hospice was called in. Right now I am comfortable and plan to remain so. Will I die tonight? maybe, maybe not for months. The plan is to keep me as comfortable as possible. As I get sicker my posts will get fewer but my sister Peggy will keep you all updated.
I am ok with this, I have asked God to give me strength as I continue down His path. So, meanwhile keep me in your prayers and I will keep you all in mine. God bless

Where have I been?

no, haven't disappeared off the face of the earth, I've been in the hospital, All the nausea and vomiting had really taken their toll, plus I had gotten a transfusion that week, my blood count was 22.So, went the ER, my blood count there was 16! (normal is around 36). I have been receiving blood ever since. Fortunately it looks as though i will be making it home tomorrow (Wednesday), keep your fingers crossed. no known reason why my counts are low, maybe just not making enough blood? Anyway, the docs want to make sure that I can get along on my own, well, with a walker but without passing out or tripping!

Flying Pig

For those of you who don't hail from the Cincinnati area, we have a marathon each year called the Flying Pig. Standard 26.? miles the whole nine yards. This year's was just held on Sunday and my wonderful brother Mark ran the whole thing in 3:40! not bad for someone who is just coming up on 50. But the most wonderful thing he did was to dedicate his run to Luis and me. Talk about bringing on the tears! My sister in law had a shirt made for him with a picture of Luis and me and "This run's for you" on the top! Once again I find myself giving thanks for my wonderful family, no one could have it better than me! Or maybe it's that some people don't recognize their blessings. Take my advice and take a look at your family, warts and all, and tell me that there is not at least one thing that makes that person, that family, that makes them special to you, and then give thanks that you are blessed with your family.

good news bad news

fairly uneventful week, the good news is that I was actually keeping food down, until today, I knew it was too good to last. Oh well, the side effects of chemo I guess. I am careful about what I eat, don't want to upset the apple cart, so to speak.
The bad news is that I am experiencing quite a lot of pain, feels like someone is stabbing me with a butcher knife. But this could actually be good news, because it could be a sign that the chemo and the sirspheres are doing their job and killing the tumors in my liver, so, my doctor upped my pain meds and we're all keeping our fingers crossed that that is the case.
My blood work didn't come out so great, my white blood count is down, white blood cells are what helps fight infection, so I have to be careful. My red blood count is down as well, so I got yet another shot (OUCH OUCH OUCH) of stuff that is supposed to encourage red blood cell production. If that doesn't work by next week, I may have to get a transfusion. I've given enough blood over the years that I think I deserve a little of it back, don't you think?
The weather is beautiful, I just love spring! My wonderful neighbors planted my impatiens and put up my decorative fencing,, so my front yard looks so pretty. The irises are blooming and beautiful, and my knockout rose bushes are HUGE!
Yesterday my nephew received his first communion, plus lots of birthdays in the family this week, nice party at my sister's house, her birthday too, the big four oh!
Hope everyone has a great week!

who knew?

so, I have been feeling just great! NO NAUSEA!! lots of energy. The nurse from my radiologist's office and I sat down to try to figure out why I felt so much better after having the procedure done. The only thing we could figure is that I had not been given benadry pre procedure before, and I felt great the day after. Something in the benadryl? maybe, whatever it is, I'll take it. So I am taking one benadryl cap every 3 or 4 hours, makes me a little sleepy for a short period, but I get through that and feel fine the rest of the day. hooray!

Feeling great

today is a good day! have lots of energy and NO nausea! Had my sirspheres yesterday, maybe it was the drugs they gave me yesterday, I don't care, I am just going to enjoy the moment!

I lost a dear friend yesterday

Got the call this morning, my dear friend Melissa died yesterday after a heroic battle with colon cancer. I HATE THIS DISEASE!!!! Fortunately she passed peacefully in her sleep. Melissa has always been my hero, even through the way she handled this biggest challenge. Two years ago the doctors gave up on her and told her to go be with her family. She refused to give in and had another two years with her family that no one thought she would. Melissa, I am going to miss you so much!

no news

went for chemo today and to try to figure out why I still can't keep food down. My onco thinks that perhaps my stomach and intestines are moving food along as fast as they could, so trying more of a medicine that I have been taking, Reglan. Now instead of twice a day I will be doing it before meals and see if that will work. It was pretty depressing today since I was in quite a bit of pain and couldn't keep my dinner down.

update

well, I've had all the tests and they can't find anything, considering some of the things that could have been wrong I guess I am lucky. They are saying that the cause of all the nausea and vomiting is probably the chemo and radiation. I was having a fairly good week, ate and kept everything down, until this morning when I woke up at 4 am with terrible nausea and dry heaves. It really gets to me sometimes. I can't say I'm not happy with my present weight, I haven't been this thin in some years, but I don't like the cause and I don't want to lose anymore. Cancer just sucks.

Still losing weight

seven pounds just this week! So, today I have a barium swallow, yippee, I get to drink chalk!, and on Friday an EGD with is a fancy way of saying that they will be putting a tube down my throat for a look see. There are all sorts of possibilities, some major, some minor, I just want the nausea and vomiting to stop!

Went to IKEA yesterday with my sister and her friend. 2 1/2 hours in a wheelchair on my now bony butt, painful! but it was fun, next time I'm bringing a pillow!

Old friends

my friend Alice and her daughter Liann just left after a 4 day visit. Alice is an old Navy friend who I have known for nearly 25 years. They didn't care if I just laid on the couch all day, they just wanted to see me and help out where there could. And they did! They cleaned out my refrigeratior, how embarrassing, there was probably stuff in there from the first Bush era (just kidding)! They entertained Luis and we had some great talks. Liann and Luis got along great, there were some pretty fierce battles on the Wii!

I know I am repeating myself, but I am so lucky to have such good friends. I think often times we tend to take friendship for granted, take it from me, true friendship is a blessing.

Happy Easter Everyone!

Hope the Easter Bunny was good to everyone. I have had a busy several days, Luis's godfather was visiting from California and we went to Great Wolf Lodge for Luis's birthday (11!! they grow so fast!). Had a great time, the place is amazing. Luis and Bruce got the gloves out and tried out Luis's pitching arm, 40 mph! not bad for this early in the season and the weather being cold. His coach says he'll get him up to 50!

Today is Easter and we had a nice family dinner at my sister's and also celebrated Luis's and my niece's birthdays. Luis got his favorite color (green) and is plotting what to do with his newly found riches. He also was outfitted by his generous godfather with a new glove and cleats so he is all ready for the baseball season. He is also playing volleyball and they have their first game of the season a week from tomorrow.

I have had a rough patch physically, still losing weight and have a hard time keeping anything down. Needless to say my energy is sapped and I don't have much of an appetite. Had my CT scan last week and get the results tomorrow when I go in for chemo. And through all this I still have my hair so I count my blessings!

Once again thank you doesn't quite cover it

So, it's been raining cats and dogs and last night my neighbor knocked on my door and said "you know your sump pump isn't working" which of course means my basement could flood. I called my brother in law and God bless him he was out until 8:30 in mud and a cold rain installing a new sump pump, with my 82 years young neighbor supervising and giving running commentary and fortunately providing all the tools. I am not surprised that Ray would do this, he is that kind of guy, but it still overwhelms me how lucky I am.

On the health front I am still feeling fatigued and having a hard time keeping things down. I had a CT scan today so we will see what that shows when I go to chemo on Monday. I could find out tomorrow but we are going to Great Wolf Lodge (a waterpark resort) and my friend Bruce is flying out, so if it's bad news I don't want to put a pall on the trip. I am hoping for good news especially from the sirspheres, so keep those prayers coming and fingers crossed!

Feeling better

thank goodness! I was really starting to get down, sick and tired of being sick and tired. but today is the first day in several that i haven't puked (tmi for some). Every day is a new one, and although I am tired, I am glad today is a decent, if not good, day

Well no wonder!

I've been feeling really lousy for the past several days and I found out the reason yesterday. It was not really surprising, it was side effects to the xeloda, one of my chemo drugs. My blood counts (like platelets, white cells, etc) were off whack, in fact my platelet had dropped from 149 to 72 (142 is low normal). my doctor took me off the xeloda (hooray!) and gave me a new drug for the nausea and I am feeling MUCH better this morning. one day at a time, that is my motto

not feeling great

or very good for that matter. It's been building up for the past few days and emotionally and physically I feel like I've been run over by a Mack truck. Nothing specific, well, pain and GI upset, but overall I just feel like crap. I am sick and tired of being sick and tired.

I love my son

but there are times when I don't like him very much, like today. We are in the middle of a snowstorm and he just pitched a fit because I wouldn't go out to buy him snow pants (my jeans will get wet and my legs will be cold!). So, in his eyes i am the worst mother in the whole world.

Hitting the "wall"

yikes, Kristin and I spent (mostly Kristin, what a worker!) several hours cleaning Luis's room yesterday and I am exhausted! bags and bags of stuff for Goodwill and just trash, I mean, how much stuff can a 10 year old have? a LOT! I get so out of breath with such little effort that there is no way in hell I would have been able to do this at all, so Kristin, you are amazing and I thank you so much! It started with Christine helping me move the turtle and the fish down to the rec room, much better place and I will say that the room is starting to shape up. Once again I am reminded how blessed I am to have such good friends. Think about your friends and if you get a chance, tell them thank you, there is nothing like a good friend. And of course I know that Kristin has been wanting to get at Luis's room for the longest time and I was glad to oblige! So Luis has a clean room that is mostly clutter free, adorned with many many sports posters (of course!) and there are three exhausted women who have accomplished the impossible! Again I say there is no way I would have been able to do this without them so Christine and Kristin a big hug and a thank you!!!

how refreshing to write a whole entry without mentioning chemo, symptoms, etc etc. it gets boring after a while, you know?

still feeling good!

amazing! Yesterday I was full of energy, just love that decadron. Today a little more pain but still have enough energy to tackle Luis's room. So that is what my friend and I are going to do. Cleaning a 10 year old boy's bedroom, fate worse than death if you ask me, but it's got to be done!

Chemo, Round 3

Started my third round of chemo today, I am feeling pretty good, much better than I did this weekend where I spent most of my time hugging the porcelain. Of course the worry is that I am obstructed, but I think it was just a stomach virus because Luis woke up puking this morning and it has been making the rounds at school. So, they took more blood and I haven't gotten any phone calls yet so I am assuming that I am in the clear. I am not yellow which is a good sign. I am working on the Decadron high, which unfortunately makes me think I have more energy than I really have, so I get overtired because I do too much like an idiot. Oh well, that high will be over soon and I will be feeling like crap for a couple of weeks.
I am scheduled for a CT scan in 3 weeks to see how I am progressing, to see if all this puking, radiation, beads, etc has made any difference. Let's hope so.

a sonic day

I don't know why, and I am not going to question, but for some reason I had a hankering for a Sonic Burger! My appetite of late has not been good at all, so for me to have a taste for anything is nothing short of amazing. So, I called my friend Christine and we went to the local Sonic Burger. It was just as good as I wanted it to be! I didn't make it through the whole thing but I did a respectable job at eating about 3/4 of a double cheese. Maybe this time the scale will not be so harsh. I don't know, sometimes you just need to have grease I guess!

I am fine, just exhausted

Even standing for a brief period of time makes me lightheaded and out of breath, I'm no more anemic than usual, but oh my word so so fatigued. It's a side effect from all the radiation of the sirspheres, so I hope they are doing some magic!

Gratitude

I am grateful for so many things, I give thanks everyday that I live where I live, have the family I do and am blessed with so many friends. I have been touched lately at how gracious my friends have been with my son, encouraging him to come to games with them, letting him spend the day or have dinner, giving him a semblance of a normal life. While I love the fact that he wants to spend time with me, I also know that he needs his friends and all those activities that boys like to do. So, to John, Christine, Rob and Sue, thank you from the bottom of my heart.

PS, I don't know if you said anything to him, but I finally got him to take a shower tonight, wahoo!

Does my pee glow in the dark?

I bet that caught your attention! Had my sirspheres procedure yesterday and so far I am feeling pretty ok, not even as sore as the angiogram, go figure. keeping my fingers crossed it keeps up. As far as the pee goes, for what ever reason they tested it when I went to the bathroom at the hospital yesterday and you could hear the geiger counter down the hall! They don't know why. I am not a danger to anyone, just have to keep the cats and Luis out of my bathroom and flush twice. I am sure this is getting into the realm of TMI. Anyway, I am feeling pretty good, going to take things slow but I am back at work while Luis sleeps (snow day).

Feeling a little better

thank goodness! and highlight of the day was Girl Scout cookie delivery!! woohoo! Thin Mints and a cup of tea, that will get my appetite going! I'm hoping that I feel even better Wednesday, it would be nice to have a really good day before the Sirsphere adventure.

As far as my weight loss, I had to laugh, I had quit Weight Watchers for obvious reasons, duh, but now am almost at my goal weight. What comes in the mail today but a thing from WW on tips for weight loss, and a special to get me to rejoin. Uh, I don't think so. I don't want to lose any more weight, so I am hoping the Megace will do the trick. The toughest thing for me is not being able to drink cold fluids, I never thought that would affect my appetite so much, but it does. One of the side effects of the oxaliplatin is extreme sensitivity to cold, including my lips and tongue going into spasm and the feeling that I am swallowing a brillo pad. Not very appetizing for sure. So the week before the next dose of chemo is when I really load up on my cold stuff, Greaters Double Chocolate Chip Ice Cream, ice water, my needs are simple! Then it starts over again. So, a three week cycle goes something like this. Week one, feel like crap, can't eat, nauseated, diarrhea, nothing cold, can't breathe or touch anything cold. Week two, feel a little better, nothing cold to eat or drink, and just have to be cautious with the exposure to cold. If I breathe cold air through my nose I go into fits of violent sneezing which really HURTS, and if I breathe cold air through my mouth I feel like my throat is closing up. Very pleasant. Week Three is when I feel the most normal, finally some energy.

Stamina is what I am lacking for sure. I used to be full of energy, walk 5 miles with the dogs, blah blah blah. Now I am out of breath just walking up the stairs from the garage, and I'm not running up those stairs for sure. The fatigue and lack of stamina is often when I realize that I am truly sick, because it is so permanent. Nausea I can deal with, there are pills. But I don't think I will ever get the energy back, so I just have to face it.

I started this post on a positive note and I will end it so as well. I am feeling MUCH better today and will feel better tomorrow. I still have my sense of humor and plan on keeping it. I can't wait for the weather to get warmer so I can at least sit outside on the deck and enjoy the sunshine. I think we're all a little tired of winter! Baseball season is coming soon and I can't wait until I can get out there and watch Luis pitch again. Did I mention he is a great little pitcher? At least this proud mom thinks so!

just a short update

thanks to all who have been calling and asking about me, and my apologies for not answering the phone. There are times when I just am not up to it, and lately this has been that time. I have not been feeling the greatest, nausea, vomiting, etc etc. chemo is not a fun adventure for sure. I have no appetite lately and have lost 12 lbs in less than a month. When I was on Weight watchers I would have been cheering, but now I am just sick to my stomach. I got my flu shot but I still feel like I have the worst flu I have ever had, and I haven't even gone for my sirspheres yet. This is the time when motherhood is the most difficult, i don't feel good and Luis needs me, nothing major, but the little things are what really get to you, like homework and dinner! UGH!!!

angiogram

had my angiogram yesterday and things went well according to the doc, so I am set for the sirspheres on the 21st. I won't say the procedure was a piece of cake, laying flat on my back was no picnic when you consider that I have tumors in my spine, but nothing I couldn't handle. So, right now I am limping around like an old lady but doing fine.

The kindness of strangers

2 posts in one day! This one is special. Today I received in the mail a beautiful small quilt from someone in New York state representing an organization called the Prayer Quilt Ministry. With it came a card which read in part "Each knot on this quilt represents a prayer that was said specifically for you." I was quite touched.

So, to Jo Ferretti, the Prayer Quilt Ministry, and the person or persons who sent along my name, thank you very very much.

even without cancer, parenting is frustrating

to say the least. Here is what I think:
1. Helping with homework, especially math, is cruel and unusual punishment
2. "Whatever" when used as the response to a question, command, etc should be banned
3. Don't these kids know that if they keep rolling their eyes they will get stuck that way?
4. I refuse to clean my son's room, however, I will be happy to post a "toxic waste dump" sign on the door
5. why is it that as soon as my kid needs a new winter coat the stores don't have any? Same holds with school uniforms.
6. I think my son thinks that instead of "mom" my name is "mom can I" or "Mom can I have"

I am quite sure there are others, feel free to chime in ;-)

I'm so tired

I know I've said it before, but I'm saying it again, I am SO tired! Cancer, chemo, radiation do not mix with trying to raise an active and often very silly 10 year old boy, that's for sure! It's not a fair fight. Well, one week of radiation down, 5 more treatments to go. Angiogram next Friday, then the SIR Spheres on the 21st. I am hoping that by mid April I might be able to settle into some kind of routine and get some of my energy back. We'll see. Meanwhile I am feeling ok other than the fatigue, so if you see me nodding off in church or anyplace else, just nudge me.

OY VEY!

Well, the first week of the new chemo regimen is drawing to a close, thank goodness I am starting to feel normal! It was rough going at first, I was pretty much flat on my back over the weekend, but started feeling better yesterday and today. I just never realized what true fatigue is, the kind where you can't get out of bed to brush your teeth, at all. I started radiation yesterday which leads to more fatigue, but fortunately I just have 10 treatments and i will be done. On Friday the 8th I go in for an angiogram in preparation for sir spheres (Selective Internal Radiation Therapy), the little radioactive glass beads. So, radiation for the tumors in my spine, sir spheres for the ones in my liver, and chemo to give them all a big whack. suffice to say the next 8 weeks or so are not going to be pleasant, but it's all for a good cause, right?

Cancer is busy!

and you never get a day off! I have spent the morning arranging/rearranging appointments. I will be meeting with the radiologist today about radiation, then tomorrow morning to talk about theraspheres, then start chemotherapy tomorrow afternoon, then the support group for my son tomorrow evening, then my counselor on Thursday morning, phew! Naturally the side effect for all of these treatments is fatigue, heck, I'm fatigued just thinking about them!

The bright side

one of the bright spots about this whole experience is that old friends and relatives have been coming out of the woodwork to make contact and catch up, especially my Navy friends. I retired 10 years ago yet people are still able to track me down and call me. It's been a constant old home week, exchanging wonderful conversations, emails, letters and sometimes visits with people I haven't heard from in years. My relatives have been fantastic as well, keeping up through phone calls and letters. I enjoyed a visit from my two favorite aunts and uncle this weekend, no sadness just joy.

I hate that this is the reason for the reconnections but you know, I'll take them any way I can get them!

keeping my fingers and toes crossed

so, starting Wednesday I will be starting a new round of chemotherapy drugs, oxaliplatin and fluoruricil (5 FU). The oxaliplatin will be given IV every 21 days and the 5 fu is a pill I would take every day for 14 days on a 21 day cycle. I will also probably be getting radiation therapy for the tumors in my spine so I don't collapse my spine, that wouldn't be good ;-).

I also got a call from the interventional radiologist at UC, they want to see me after they look at my CT scan CD. There is a possibility that I would be a candidate for something called "Theraspheres". These are little glass beads filled with radiation that would be inserted in my groin then travel to my liver and directly to the tumors. This would be a good thing, so I am keeping my fingers and toes crossed and praying that they will accept me as a candidate for this procedure. So, we shall see.

two posts in one day!

well, heard from the liver specialist who wants to see me on Wednesday, I am hoping that this is a good sign. Meanwhile, had my MRI of my hip and back tonight, as a lovely parting gift they gave me a CD of the MRI, I could actually see the tumor in my back, the hip, well, all I can say is that it looked like a picture of a steak to me! Keep your fingers crossed and your eyes up to heaven for good news on Wednesday!

update

so, I may end up glowing in the dark. I have an MRI scheduled today of my back and hip to see how much involvement there is and where they would need to do radiation if it comes to that. The fear is collapsing my vertebrae, a very scary thought for sure. Then tomorrow another CT scan, this time of my lungs to see if the cancer has spread there. In the mean time no chemo until we talk to the liver specialist, who of course wasn't in the office today, just my luck. my spirits are good, just wait and see. surely a test of anyone's patience!

It's not always good news

I had a CT scan this past week and got the results back today, the news is not good. In a nutshell the cancer is spreading. I have four more tumors in my liver, more lymph node involvement and now it has spread to my spine and hip. Not the news I wanted to hear but I had a sneaking suspicion that the report was not going to be good. Fortunately I am feeling good, and at least I know why my back was hurting! Haven't talked to my oncologist yet, that comes Monday. My hope is that we can find more aggressive treatment and slow this sucker down! I feel fine and I am not licked yet! So, keep the prayers and good wishes coming!

Happy New Year!

Well, 2008 is starting off great! After a 30 lb weight loss I am finally getting my appetite back! Now mind you, I could have stood to lose that much weight and a bit more, but this isn't a diet I would recommend! After feeling like crap for weeks and weeks I decided that one of the drugs I was taking, Tarceva, just wasn't worth it. To paraphrase one of my favorite lines from Steel Magnolias, I would rather have 6 months of normal than 8 months of misery. My doctor also put me on a new drug to stimulate my appetite and for the first time in months I actually feel normal! I still have pain and get tired easily but I can manage.
I hope you all had a great new year, Luis and I were invited to a couple of parties, but after watching Shrek 2 he went to bed and I fell asleep on the couch. They call in amateur night for more than one reason! My days of partying until I drop are long over :-)
My hope for myself and everyone else is for a safe, HEALTHY and wonderful New Year!