Just amazing...

So as most of you know I have been slowly or quickly, depending on how you look at it, losing weight and mom and I went and did a little retail therapy at Coldwater Creek Outlet in Vacaville and I now fit into size 18 jeans. I haven't been this size since high school, we're talking over 20 years ago, just amazing. The funny part is that I seem to be more self conscience about my shape, the curves and bumps and lumps of me than when I weighed almost 400 lbs. I'm now somewhere around 235 or so and as chemo continues I will continue to lose weight.

So speaking of chemo I wasn't able to have treatment this last week because my levels were too low. My White Blood Count (WBC) was only .4 which means I don't have the greatest defense against getting sick. I have been very fortunate that no one around me has been sick and I haven't run into anyone being sick in stores and what not. I was thinking that Christmas shopping was going to have to stop and that the online option was it. But I've been out and feeling pretty good.

I have labs tomorrow so I hope that they are good and I can continue my chemo and get this over with. That means chemo on Tuesday and then that completes the first round. I believe I will then have another week off before I start the next round of 3.

This has been a relatively good week, only a little tired, but no bone pain, but achy like I have the flu without having the flu. So let's keep fingers crossed that after treatment that things will be ok and no bone pain, that's the only thing that seems intolerable.

Thanks to everyone for all the prayers and the hats I keep receiving it's very cool, I have quite the collection. I wish everyone a very Merry Christmas and a Happy New Year, may you all be safe and happy.

Until next time, maybe even next year,
Kate

Update on chemo

I'm not sure if you've noticed but at the bottom of the posts there's a label and it used to say My Journey. I changed it to Our Journey as I'm not the only one going through this and having to live with this crap. I've been a little angry lately that this disease has affected so many and changed so many lives, it just makes me mad. I am of course grateful that I have all the support that I do have I'm not sure where or how I would be without it. Thank-you.

So yesterday I had my second dose of Gemzar and I had to go to Vallejo for the treatment as they were understaffed in Vacaville. It was a very different experience. I was in a very tiny room with no windows and very gloomy. My mom was with me and she read to me for a little bit and then the meds kicked in and I was tired so I rested as she read to herself. Before I knew it, it was over and we got to go home.

Last week wasn't so horrible, but I did have 2 days of bone pain in my legs only and I was able to get to sleep with the wonderful Ambien. On Saturday I had a low grade fever and I'm not sure if that made me vomit or it was just the Gemzar rearing it's ugly head. I've heard this is one of the more easier chemo treatments to have, but it seems to kick me down a few times.

So on Sunday I was up early and we, Rob and I made Thanksgiving Day turkey, ham, stuffing, potatoes, sweet potatoes, greans and grean beans with onions and bacon. It was an awesome day, oh yeah we baked a pumpkin pie also. Family and friends came to celebrate and I did pretty good, I only had to lay down for a little bit.

The next day, Monday, was a stay in bed day, but I guess that's the price I payed for trying to do an all day event. But like my mom told me if that's the price to pay for a very good day, it's worth it.

So with chemo I had a headache last night and a small fever again, but other than that things are going well. Today I'm supposed to meet up with my old boss Dr. Dian Allen and I'm really looking forward to it. It's been along time since we've seen each other and I'll be picking up my things that I left there when I had to leave.

So that's it we're up to date again. Up and coming things are keeping an eye on my blood counts so that I can continue treatment and the losing of my hair. I'm thinking I need to let Rob buzz my hair again so I don't have all these little hairs everywhere, which will be annoying I'm sure as I've heard that from my dear friend Mary who is going through this battle also with cancer.

Thank-you for all the awesome thoughts and prayers that you all have been sending my way, we know that it's working without it doubt. I can't thank-you all enough.

Until next time.
Kate

The best news!!!

Happy Birthday to me without a doubt. I had my appointment with my oncologist today for the results of my PET scan and there is NOTHING glowing inside me!!!
WOOHOO
JUMPING UP AND DOWN
So this means that I don't have any growing tumors in my abdomen or anywhere else either. Dr. Huang said 1 cm. or bigger would show up, but we've read that PET scans show things smaller than that and still no glowing.
I'm so damn excited it was the best birthday present I could have asked for.
I start chemo again tomorrow, so I hope all goes well, but I had the Gemzar chemo in the beginning of this whole process and it wasn't so bad so I can only hope for the same.
Until next time,
(still jumping up and down)
Kate

It's been awhile...

So it's been awhile since I've written and although not too much has happened I do have a few updates. The most recent being that my Gramps' wife Marte has lost her fight with cancer this past Tuesday. She was in hospice care and wasn't doing well and then suddenly her fight ended. I'm very sad as she was an awesome person and someone whom I loved and cared about. We had said that we were in this fight against cancer together and I will keep fighting. I know that Marte was in a lot of pain due to the cancer so I'm glad she is now pain free and cancer free. My Gramps is doing ok although I know he is very sad to lose his wife whom he loved very much. I really wish I could be with him in AZ to help him through this, but Marte's kids are going to be there to help him through this difficult time.

I'm not sure if I had meantioned that I was going to have a PET scan done, but that was done on Tuesday. I didn't think it was that bad, but the liquid I had to drink was this thick milky banana flavored substance. Not bad going down but my system didn't like it one bit and I will definately have to take some digestive enzymes next time. I think it was way too much for my little pancreas to take.

I meet with my oncologist on my birthday, the 30th so I'll find out my results then. They better be good I'm not sure I can handle anymore bad news. But then if it is, I'll get through it and move on to the next step. I also have a radiology appointment also, not for radiation but just as a follow up appointment from radiation that ended earlier this month. I also have labs I have to do since I start chemo again on the 1st. So that will be the start of my 9 sessions of Gemzar. I'm really hoping that I am able to handle it well and get through the holidays.

I just got an invitation to meet up with some old friends from high school in January and I'm totally excited!!! I so hope that I'm doing ok and that when we meet in January I'll be able to enjoy our time together.

Well, I've enjoyed my month off from chemo and radiation, although I'm still tired from the radiation and tend to sleep a lot. But it's nice not being poked and proded.......lol Not too much has been going on but trying to spend time with family. I talk to my mom every day and we get to see each other on the weekends and it means the world to me that we live close together and have that kind of bond. I can't even express how awesome my mom is.........she's AWESOME! In fact I'm so lucky with the wonderful family and friends that I have I couldn't ask for more. My family has been so wonderful and supportive that there's no way I could be doing this well and staying this strong without them.

As far as how I'm feeling I'm doing pretty good except for the being tired, but I'm hoping that that will go away soon. I do have a little more pain in my abdomen that scares me a bit but it just could be my body reacting to the radiation. I will update again after my appointment with the oncologist and hope to be bringing good news.

Thanks to everyone for all your prayers and positive thoughts. I love you all and wouldn't be able to do this without all of you.

Until next time,
Kate

Some great news

Yesterday started out with getting rid of my chemo pack that was attached to me......woohoo, that alone was exciting.....I'm FREE. I didn't have to worry about when I would get up and go somewhere that I would get reminded that I had a pack that I had to take with me. I looked at my port in my chest and it looks like a bruise. I'm not sure if that's because it is a bruise or that my skin is so pale that you can actually see the color of the port under my skin. The port is purple. Kinda weird.

Next, I had my appointment with my oncologist and Rob and my mom accompanied me so that they could ask questions if they wanted to and to hear what she had to say. We talked about taking some digestive enzymes to help me out with digestion. Digestion is a little harder without my gallbladder and missing apparently a very large portion of my pancreas. Dr. Huang showed us a comparison of CT scans of my pancreas before and after surgery and it's almost half of what I started out with. But everything seems to be working well and it's a good thing I'm not so into sweets these days, might be a little rough on my little pancreas.

Then, Dr. Huang told me that there was one good thing that she saw on my last CT scan when I was in the hospital and it was the margin of the mass inside me and that the margin was shrinking. IT'S SHRINKING!!!! I about busted out of my skin, did a little a dance (I'm dancing, I'm dancing). All I can say as I sit here softly crying is that these are tears of joy and thank-you thank-you for all your prayers because they are working!!!! We will make it through this, without a doubt. I have no doubt!

Now for some more cool news is that I have the entire month of November off from Chemo. I asked Dr. Huang if we can do a PET scan (this scan messures the growth of cells by lighting up the glucose they use to divide and create new cells) and we'll be doing the scan but I have to be finished up with radiation first or it messes up the results of the scan. So I finish radiation on Nov. 6th and then we're going to do the scan the 23rd or 24th of Nov. Then I have a meeting with the Dr. on my birthday (the 30th) and then I start Gemzar chemo again on Dec. 1st.

I was wrong as to how the new sessions of chemo are going to progress, but I get it now. So I still have 9 sessions of Gemzar to go. So it's 3 weeks in Dec. and one week off then another 3 weeks and one week off and then the final 3 sessions. So if my body can tolerate it all and I don't have to skip any weeks I'll be done with chemo on Feb. 9th, 2010. The Dr. did say that this is going to be a little harder on my system and we'll be looking very closely at my lab results, which right now btw ARE AWESOME!!!! So if my counts are too low then we would skip that week and then try again the next week.

I have been so very fortunate to have so little issues compared to what could have happened that this will be the real test of how my body can handle this.

I'm proof that positive thoughts and all your prayers are working so please please don't stop, I love you all so very much and can't say thank-you enough. We are so very blessed to have such awesome family and friends and we wouldn't be in such a great place without all of you.

Until next time,
Kate

Just a little update

Things are going well, my energy is pretty good on most days and all my levels are very good. The only thing that is a little low is my platelets, but they are still ok. Most days I'm up in the a.m. and just get through waking up, taking meds and vitamins and getting ready to get picked up to go to radiation can be quite the chore. As of my last check up with the nurse I'm weighing in at 255 now and I'm pretty sure that's what I weighed when I met Rob in 1999. Amazing huh. It feels awesome even though everything isn't quite bouncing back like I thought it all would. Guess the weight came off too fast. Regardless it makes me happy.

I don't really have any secrets as to how the weight has come off, but I do tend to survive on cheese quesadillas. There's enough cheese in there to make the two sides stick together so pretty low on calories. But they are one of the things that doesn't bother my system and I don't have to take anything. It's kind of an on going joke with mom and I since she thinks I should eat things that have more nutrician in them. Moms.........lol But seriously, it really has to do with portion control and I just have a much smaller stomach, so it decides when I'm done even though I would love to eat more, I just can't. Old habits try to sneak in, but I do my best to stop them.

On Tuesday the 27th I was going to be done with radiation and chemo together but I found out yesterday that I have to do so more radiation, an additional week and a half. I guess it's good to do it now, just to keep the process going, but I was really looking forward to it being done. But if the Dr. thinks that I need more who am I to complain.

So that's the latest update. I don't start chemo again until Nov.17th and that's the Gemzar again and possibly another chemo agent. I'll be talking with my oncologist on the 27th to see what the plans are and also get her to give me a PET scan. I would really like to know what's going on in my body rather than all this speculation about whether or not the cancer is back and where it is. Just need to know.

Thank-you, thank-you to everyone for all your prayers and wonderful positive thoughts, we wouldn't be able to get through all of this without all of you.

Until next time,
Kate

How things are going....

Surprisingly enough, things are going very well. I've just started my 3rd week of chemo and radiation and I haven't had too many side effects happen. My abdomen is a little sore where the radiation goes, but no outward signs of burns or anything like that. My blood counts are awesome, just like a "normal" person, which all in all is awesome to say the least. Going to radiation everyday is getting a little annoying, but what can ya do, it's not going to last forever.

Carrying around my chemo everywhere with me is kind of drag, occasionally I forget that it's there and try to walk off without it. I get a friendly reminder that I'm attached to the machine and it drags me back. The 27th is my day of freedom from the chemo/radiation and then I'm supposed to have 4 weeks off before we start with the Gemzar again, but that may be up in the air. My oncologist may want to add another chemo agent to add to the Gemzar and I'll know more about that when I see her on the 27th.

All in all things are going well.

Thank-you everyone for you help and support I don't know what I would do without all of you!!!
Love you all,
Kate

Wigs!!!

So what be the fun of having no hair if I didn't have any wigs. We have only named one, if you have any suggestions for the other 2 let's hear 'em. The very top one has a name and that's Lola. Not sure why, but it seems to fit. Lol. I must say that my head is not bumpy at all and it's a pretty good shape........lol And let's talk low maintenance shall we??? Not that I fussed a lot about myself before, but this put a new spin on low maintenance.

Hair Day!!!!

Ok, so here's the long awaited pictures of "The shaving of my head"!!! It was actually very relaxing, very different experience, but one that so needed to be done. Rob did an excellent job and he'll be in charge of the up keep. Right now with the chemo that I'm on, it's not attacking my hair follicles like the Gemzar did so I actually have some hair growth. Enjoy the pictures!!!

Another step has started.

A few things have happened as of late. Mom and I had a good "retail therapy" day on Sunday. We went to the outlets in Vacaville and went to Coldwater Creek. What a cool store, very earthy and all those browns, how could I resist and how did I not know about this place earlier??? It is official, I'm wearing a size 24 in jeans now, I can't remember when or how long it's been since I wore that size, heck I may have even skipped that size, just don't remember. After Vacaville we went back to Fairfield and went to Lane Bryant and I got one of those bras that was shown on Oprah, the one that doesn't give you lines on your back. It's very cool and super comfy. Mom of course remembered that I needed to have labs done before chemo so we raced to Vallejo so I could get my blood drawn and I was ready for Monday.

Monday came and went. The radiology/oncology dept. called me and said their machine was down, so I wasn't able to come in and start radiation. Since I wasn't able to start radiation they didn't want me to start the chemo either. So now it's Tuesday and Rob and I went to radiation. It's just a big x-ray like machine that rotates around to do the top and bottom of my body. Didn't feel anything, just layed there. I've heard that there's a cummlative effect and that it's like a bad sunburn. Oooohhh something to look forward to........lol

After radiation Rob and I went to Vacaville to get my chemo. I've started the 5-FU and it's being infused. That means that I have a little pack that's attached to me with a dispensing unit that gives me small doses of chemo. At first I was told that I would have it for 5 days and then I would get disconnected and then hooked up again after the weekend. Not my luck. I'm doing 7 days of chemo, so every Tuesday I'll go in and they will just change the dressing and give me a new pouch of chemo. Oh yeah, so I can't get any of this wet, so showering is going to have to get creative. So far I'm not feeling any effects of the chemo, which is good, but it could be cummlative also, but I'm hoping since it's going in so slow that my body will be ok with it.

It's time. This weekend Rob is going to shave my head, or I should say, buzz my head. Miss Emily will finally get to play with my hair and give me a mohawk and we'll spray it pink. Yes there will be lots of pictures taken, before and after. I think it's time to model my wigs too, so there will be pics of those also.

I know this gets repetitive, but I can't thank everyone enough for all your thoughts and prayers, it really means so very much to Rob and I.

Love you all,
Kate

Another trip to the ER you say???

Wednesday night Rob and I had dinner and I felt like I had over eaten, but I hadn't, and I figured it would just go away. So when you know you've over eaten and then your abdomen gets even tighter and hurts more before it gets better, well it never got better. I made it through the night thinking by morning my body would process and all would be well. Not my luck this time, I could barely bend and getting out of bed was extremely painful. I texted Rob and then I called the advise nurse and of course they say come to the ER immediately.

So we get to the ER immediately and I was checked in within 30 minutes but then sat in the hallway on a gurney for about 6 hours and that's how long it took to get pain medication also. Finally, a wonderful nurse was assigned to me and got me on IV fluids and got pain medication and I had some relief. They did a chest x-ray, CT scan with contrast and then because they couldn't control the pain they admitted me to the hospital. After about 17 hours from the time I got to the ER I finally was in a room and getting constant care.

Shortly there after they took me do an ultra sound and then Dawn from Radiology came over to see if I was up to still getting my port put in. Of course, let's put in the port, I'm here. The port being put in wasn't so bad, hurt a little but over all was ok.

I then spent the next 6 days in the hospital and I saw my oncologist and she believes that my cancer is back and is attacking my liver causing it to enlarge which causes pain. So, our plan is to continue with the treatment we talked about and possibly adding another chemo agent after I'm done with chemoradiation.

I start chemoradiation on Monday and today I have to go in for another CT scan for my radiologist to ensure they are hitting the right spots when I start radiation.

Exciting news: It's nails and toes day!!! Woohoo!!! Mom and I are getting our nails and toes done and spending some time together today. It's a good day!!!

So we got some crappy news and I really haven't digested it all yet, but this damn thing will not take me down, not an option.

Thank-you everyone for all the prayers and positive thoughts, please keep them coming as this journey may have gotten a little longer.

Until next time,
Kate

3rd Chemo Treatment - Last one this round

Hello everyone, here's an overview of the last week. The 2nd chemo treatment wasn't too bad, only one bought of a fever but it only got to 99, so that wasn't bad. Only a few times did I get bone pain, but it wasn't bad either. More nausea seemed like this time, but was controlled with Compazine, so no vomiting. So all in all, not a bad week.

Spent time with the Hollands on Sunday and Emily and I made brownies and had our own girls night with myself, Miss Moomoo and Krystal. Granted the boys were here too, David and Derrick, so it wasn't completely a girls night until they left, but then we went to bed shortly there after. But the next morning I had to go do labs for my chemo appointment on Tuesday so Miss Moo and Krystal went with me to Vallejo. Miss Moo went back into the blood draw room and asked what the tubes colors meant and what was the stuff in the bottom of the one tube. She's so fascinated by all medical things and especially when it has to do with me. So we let her know that the teal topped one was for my coumadin levels, which is how thin my blood is. The Red topped one tests blood chemestry and the yellow one does the CBC panel and the stuff in the bottom of the tube stops the blood from clotting. Miss Moo watched as the tech put the needle in my arm and asked if it hurt, and I told her it felt like a pinch. I told her the tech held the needle against my arm as she took the tubes in and out so that the needle didn't move in my arm and hurt me. She was just so fascinated, it just makes me happy that all this medical stuff doesn't scare her and she can be involved in what happens to me. Although she is a little too excited for my hair to fall out in patches so we can do mohawks and color them, but that's ok, that day will come eventually and she just has to wait.

Tuesday was my final Gemzar treatment for now and mom was there to hang out with me. We set up my next appointments for when I have my 5-FU infusion and I found out that it will most likely start on Sept. 21st and I come in and get the pump hooked up to my port and then I have it in for 5 days and on Fridays I'll get disconnected, so I'll be pump free over the weekends. Then I repeat that process for 5 weeks. During the same 5 weeks I'll be getting radiation everyday, Mon. thru Fri. and my hope is that I don't get the burns and soreness until much later in the process, but I know that it will happen and I'll get through that too regardless of when it starts to hurt.

After we were done mom and I went to Subway and shared a BLT sub for lunch. I've been so very fortunate that my appetite hasn't been too affected by the treatments. Granted I still can't eat very much, but that works to my advantage. At my highest weight I weighed 383, I know, amazing huh? As of yesterday I now weigh 260 almost the same weight I weighed when I met Rob over 10 years ago. I must say it feels wonderful although all my clothes are a bit loose, but I'm ok with that too. The only thing I don't like much is that I get cold pretty fast and easily, but I just bundle up and move on. Yes I will post pictures hopefully today.

So I meantioned my port of which I don't have yet because no one told me to stop taking my coumadin and my INR (clotting rate) was way to high for a surigical proceedure. So I'll be getting my port this Friday. I stopped taking my coumadin and started taking Lovenox injections, which of course aren't that bad, but leave little bruises on my abdomen.

All in all everything has been going ok. I do get tired often and sometimes just spend the day in bed, but when I have the good days I manage to get quite a bit accomplished which is very cool and makes me feel "normal" whatever that means.......lol

Thanks for everyones support and help through this process and journey, it is greatly appreciated!!!! Rob and I can't thank-you all enough for the prayers and positive thoughts.

Be well,
Until next time,
Kate

2nd Chemo treatment

Today was my second treatment and Rob went with me this time. I had an awesome view of the mountains (hills) this time and I-505. I had a different RN, his name is Sam, but Danielle did come over to see how I was doing, making me feel very comfortable, it was very nice.

So I've lost another 3 lbs. since last week, so not too bad. Treatment started like it did last week and I got the anti-nausea meds. and started an IV in my other hand. I'm so happy I'm getting my port tomorrow, no more poking and pain putting IV's in my hand. Sam did a wonderful job, he minimized my pain which of course is always good, and got the vein on the first try. My temp was at 99 so he called my oncologist and checked to make sure it was still good to proceed since all my labs came back in really good shape.

Here's where just a few of my blood levels are at:
Last week: white blood count 7.2, hemoglobin 11.4, and red blood count 4.37
This week: WBC 3.7, HBG 9.8, red blood count 3.74

Once again the Gemzar started and Sam cut it down with saline since it was burning again. Then to completely get rid of the burn he put a cold compress on my hand, worked perfect. So Rob and I hung out and talked. I did get a little tired and nauseated towards the end so Sam gave me some Compazine and it knocked it out.

We then went to Big and Tall and got Rob some pants and a cool Wolverine Marvel t-shirt, very cool and then we went to Avenue, because I was in serious need of a belt and found one, YEAH, and then for lunch we went to Bay Sushi!!! I had the tempura shrimp and veggies and then a Reno Roll.

I am happy to report that I have had an awesome day!!!! I was a little tired so I layed down and took a little nap, woke up with a little headache, but not bad. So far no bone pain, no nausea, nada!!! I love good reports.

I want to thank all of you for your support, calls, emails, positive thoughts and prayers. I can't even explain how important it is and means so very much to Rob and I that everyone has been incredibly supportive. Thank-you so very much.

Until next time,
Kate

Me and the ER

Yesterday I had been feeling not so great and spent my entire afternoon in bed. At some point I realized that I was really warm and took my temp. 101.6. My usual temp is 97.6, so 4 degrees was a big deal. I call my friendly Kaiser advise nurse and the ER Dr. said I need to come in and have some blood work done to make sure I don't have an infection brewing somewhere.
The ER. It's the place I hate the most, not that anyone likes it, but from my past numerous experiences, it has been a pain in the ass. Sitting in the waiting room for hours and then sitting in the ER bed for hours, which usually ended up lasting over 12 hours. Granted the last 4 times I was in the ER I was also admitted to the hospital and I knew this time that wasn't going to happen for a fever.
I had taken some tylenol and my temp. had gone down a degree but we drove to Vallejo anyway. Side note, I can't wait for the ER in Vacaville to open!!! (for those that don't know, it's closer and just a nicer town to go to) So we're sitting outside of the ER and I check my temp again and it's gone down another degree. I figure what can I lose, I'll call the advice nurse again and maybe I can avoid this whole senerio. Needless to say they still wanted to do blood work.
I check in and ask for a mask since I had forgotten one of my own and I sat in the waiting room for less than 5 minutes and was called into triage. And then it happened......I didn't have to go back to the waiting room, I went immediately to a bed. Yes, it's sad to say, but I was so excited, that right there cut 4 hours out of our long expected stay. They took many viles of blood and a urine sample, good thing I had to go, and then I waited. I'm not sure where these tests go, but it sure did take a long time for the results to come back. While waiting the nurse had put in an IV and after all was said and done I didn't even need it. My results were all good, white blood cell count was good......woohoo.
So the ER Dr. came in and said that it all was good and that I may be a little dehydrated would I like some fluids (through the IV) I said nope I'm good let me out of here. He responded with not a problem.
We got to the ER around 9:30pm and left at 1:10am, it's a new ER record!!!

Just an update of what happens next:
Monday I have my 2nd chemo treatment.
Tuesday I have my port put in.
The following Tuesday I have my 3rd chemo treatment and then I have 2 weeks off.
I'll update after my next chemo treatment.
Til then keep those prayers and positive thoughts coming!!!
Love you all,
Kate

1st Chemo Treatment

My day started at 6am, not that I wanted to be up then but wasn't able to fall back asleep. I thought a lot about how the treatment was going to go today and whether or not I would feel any of the side effects or if this would be my freebee week and I wouldn't feel anything at all.
Mom picked me up at 8:30 and we were off to Vacaville to the new building B, 4th floor. Since it's a new building it was very quiet and seemed very empty. We checked in and they took me back to the where all the chairs were for the chemo patients and everyone has this wonderful view of the mountains and I-80.....lol, but a nice view non the less. My nurse today was Danielle and she was wonderful. I had some anti nausea meds first and then she put in my IV and started some saline. She asked why I wasn't going to have a port put in and having a PICC line as that would have to go in and out and she said that she could ask my Dr. about having a port put in and I said yes, I would prefer it. A port is put in surgically into my chest and will be there permenantly until they remove it. What it does is give immediate access and I won't have to be poked repeatedly for IV's and when I have my infusion of 5-FU, which will be coming home with me, it will be easier than having the PICC line coming out of my arm. So Danielle called my Dr. and she put in a referral for that to happen.
Danielle then gave me all sorts of support information and numbers to call should I need to talk to someone and reassured me that I was not alone in this process. She also told me that I would lose my hair with in 2-6 weeks. We had to wait for awhile as the lab was taking it's time making up my Gemzar. Finally it arrived and Danielle hooked it up and said that it might burn going in and to let her know. After about 30 seconds, indeed it began to burn and she ran saline with it and it helped a lot.
Mom and I then played a game of cribbage. She kicked my butt of course........lol But we only had time for one game as the Gemzar is given within a 30 min. time period. So after that was done we were all good, I was feeling good, so we ran a few more errands at Kaiser and then we were off to the Olive Garden for lunch.
Olive Garden of course was awesome. Mom said that I needed to try the Shrimp and Chicken Carbonara. OMG!!! So rich and creamy......everyone must try it!!! I also had their peach tea and they put slices of peach in it, was also very good. We made it back to my house and mom hung out until I was ready for a nap around 3.
I went upstairs and slept for about an hour and woke up with chills and a headache. I took some anti nausea and pain meds and it didn't work. I can't explain, all over body aches, couldn't get comfortable, it was just awful. Around 6pm or so I finally gave in and vomited which of course is just gross but my body felt a little better and I fell asleep for a little bit. When I woke my head was about to explode and my legs felt like I had run a marathon and all the lactic acid was built up and wasn't going away. I just couldn't get it to stop. I took more pain meds and I finally fell back asleep around midnight. Phew, I survived. Man, if this is what it's going to be like after each treatment, I would just rather sleep right through it. Well no one said it was going to be a walk in the park, but wouldn't that be nice???

Girls Night

This last Friday was very exciting and packed with all sorts of things.
It started out with mom picking me up to have my labs done for coumadin levels and all my other levels for chemo on Monday. From there we went to Black Bear for breakfast and even when I ordered from the "lighter side" of the menu it was still way too much food. Guess I'm just going to have to get used to that.
Then we went to Beauty Etc. in Suisun, it's in the Raley's shopping area next to the tanning place. Never knew it was there and holy cow do they have everything you could possibly want in wigs and hair pieces and everything to do with hair. So I tried on a few wigs, which was a little weird but as I had them on and got used to the different look, it was pretty cool. So mom was awesome and said do you want to get these and I said yes and she bought my new hair for when I lose mine. Very cool!!!!
We then made a trip to costco for a few items for the girls night and the best part was that I had the refund check from having the black premium card from costco and it didn't cost me a penny. Woohoo!!!
Mom dropped me off at home and Rob was home around 1 and we went and picked up moomoo from school. She was very excited to see us and we brought her back to our house where Krystal and David had already arrived. Then the cleaning began.......it wasn't as bad as I thought but it was quite exhausting. I made my famous taco meat and cut up tomatos and onions so everything was ready for tacos for dinner.
People showed up around 6 and there after drifted in and it was a good night. I showed off the wigs and everyone liked them. Tami bought all of us girls bandanas for those days that I'm not going out and just being at home that I have something to put on my head. On girls night we will all be sporting our bandanas and I have extras for those that weren't at this first one. It was very nice to have friends and family at my house. Granted it felt like I had done a marathon that day, but it was good all the same.
I look forward to our next girls night next month. As of yet, nothing has been scheduled but will let the girls know when the next one is.

Telling Emily

As some of you may or may not know that I have a 6 yr. old niece, Emily. I affectionately call her Miss Em, Miss Moomoo and just Moomoo. I have no idea where moomoo came from, it just happened.

So tonight we decided to tell moomoo that even though I'm not in the hospital, that her auntie isn't better yet. I drew the shape of a body on a piece of paper and I put little smiley faces and angry faces around my abdomen area. I told moomoo that auntie has cancer, and then I asked her if she knew what cancer was and she shook her head no. I explained that I have these angry cells in me that can make me sick and that I'm going to be getting some medicine called chemo that's going to help get rid of it. I showed her that the chemo would get rid of the angry faces but that it would also get rid of the smiley ones too. Moomoo asked why it was going to get the smiley faces and I told her that the medicine doesn't know the difference between the smiley and angry faces.

So far so good.

I then told her that when the medicine gets rid of the smiley cells that some of those smiley cells are aunties hair and that auntie will most likely lose her hair. Em put her hands over her eyes and said, "no, no, no". This is when I lost it and she asked why I was crying and I told her that I didn't want her to be scared of auntie. She said, "I don't want you to lose your hair". Krystal and I reassured her that after the medicine was done that my hair would come back and that I would be getting some wigs to wear when I was out in public. She continued to cry and shake her head that she didn't want me to lose my hair and that this has never happened before. I held her and let her know that it was going to be ok. I also let her know that there will be times that I can't be in public or large groups of people because I could get sick so I'll be wearing a pink face mask. I let her know that uncle and I ordered some pink face masks for us to wear. After a good 15 minutes or so we were ok and I asked her if she was hungry, she said yes and we made pizza. Pizza solves all our worries doesn't it??? Well, it did tonight, at least for awhile. Em wanted one of her favorite movies in so we watched "Spirited Away" while we had pizza.

Em and Krystal went and played on the computer after we put the pizza in the toaster oven and I went upstairs to pull myself together. Cancer sucks!!! I hate that it has to effect everyone around me as it just hurts to see family and friends hurt. It's just not fair. But I'm not the first to go through this and I'm sure won't be the last. A few days ago my mom told me that my Gramps' wife Marte has bone cancer and is starting radiation immediately as it was found in numerous areas of her body. So when you have those prayers going out Marte could use some too.

I wrote my oncologist today to find out my schedule for chemo and radiation. Holy cow!!! Here's the schedule:
Starting on the 24th, one treatment of Gemzar for each of the next 3 weeks.
Then I'll have 2 weeks off to recooperate.
Then chemo (5-FU) and radiation congruently. I will have a PICC line put in as I will be getting the infusion of chemo over a longer period of time. At least I've had 2 PICC lines and know what to expect. I believe this will go on for 5 weeks, at least I know the radiation will.
I'll have 4 weeks off to recooperate.
Gemzar for 3 weeks.
4 weeks off.
Gemzar for 3 weeks.
Treatment is over.
So by my calculations that's 24 weeks.

Well, that was enough for one day. Thank-you for your positive thoughts and prayers.
Kate

It's a new day and a lot has changed...

It's been a very long time since I've blogged, but a lot has changed and I will be doing my journaling and updating here. If you would like to receive notices of when I post please subscribe to my blog.

This journey started in January of this year when my skin began to itch uncontrollably. I asked my physician to order lab tests for bilirubin as I had this same condition last year and I had a blocked common bile duct. The tests showed that my bilirubin and my liver enzymes were very high and I was referred to the GI dept. at Kaiser. This process of course was very slow and no one knew why I was having these symptoms.

In March, eating solid food began to hurt and ultimately stopped passing through my system forcing me to vomit. Poor Rob after sitting with me at the ER all night had to come back to a mess as I never made it to the bathroom. Go Rob!! I was admitted to the hospital and stayed for 12 days, still not able to eat and now vomiting bile. I was referred to Dr. Binmoeller at Cal. Pacific Med. Center in San Fran and 2 ERCP's were attempted. The first time there was still food in my system and they had to stop and the second attempt they couldn't get the scope past the duodenum.

I was sent home and I believe I was only home for about 5 days and I was vomiting again and in severe pain on my right side. So we're back in ER and finally admitted to the hospital after 12 hours. I believe this time they attempted another ERCP and a stint was placed in my common bile duct and I was sent home. Once again things went wrong and I woke up at 4am with violent chills and severe pain on my right side. We called 911 because I couldn't handle sitting in the ER and not being seen. This is now the 3rd visit to the ER and admission to the hospital and still no one has any answers. They had to replace my stint twice as it became blocked and my liver enzymes were extremely high. They placed a drainage tube that went in my right side through my liver and into the bile duct. This process was awful!!! I think something went wrong because I was under local anesthesia and I woke up and felt everything as they were still putting the catheter through my side. The nurse there had to physically hold me down because I was trying to get off the table, the pain was indescribable.

Once again I was sent home with this catheter and 5 days later I again was in extreme pain. We called 911 and I was back in the ER. The nurse said at one point that they were going to release me and I about lost it. I was like WTH... needless to say I was admitted for the 4th time. During this visit I experienced fluid around my right lung, very painful, and they tried 3 days in a row to remove the liquid around my lung. This requires an ultra sound, a very long needle and not nearly enough numbing medication. They put the needle in between my ribs and then they remove the liquid pocket but not much was coming out. Thankfully my body began to reabsorb the liquid and they didn't have to do a more severe procedure.

They also put in a PIC line which is a more permenant IV access, since every three days they would have to remove the IV and find a new spot. I was running out of spots, from my arms, forearms and hands. I even had an IV in my shoulder at one point because they couldn't get a line in anywhere else. They have also started me on TPN which is liquid nutrician since I couldn't eat and I was losing weight quite rapidly. So after 3 weeks in the hospital it's been decided that surgery in necessary and that I'll be transferred to Walnut Creek.

Once at Walnut Creek I of course had one more CT scan and prior to going there I was transported to have an MRCP done in Vacaville. My surgeon Dr. Fuchshuber (Fook-shuber) is a world renouned in biliary surgery. He believes that my panceas is malformed and has wrapped around my duodenum causing the blockage and inablility to eat food. I'm still vomiting bile every 2 days or so and he orders an NG tube. That's a tube that goes through your nose and into your stomach. I can't even explain how painful this procedure is and how uncomfortable it is. For the next 2 days I barely slept, could barely talk and my head felt like it was going to explode. Dr. F ordered another CT scan and saw that the end of the NG tube had folded on itself and wasn't doing what it was supposed to anymore so he ordered it to be removed and replaced. I thought putting it in was bad, taking it out was just as bad. At this point I was like I do not and will not allow you to put that back in my body. Thankfully I had stopped vomiting because of a new medication and as long as I didn't vomit, I didn't have to have the NG tube put back in.

So now it's surgery time. The first one I've ever had and it was exploratory since he really didn't know what he was going to find once he got in there. We knew that he would definately take out my gallbladder and probably the common bile duct but beyond that it depended on what he found. What we didn't want was a "whipple" procedure. This surgery is very extensive, invasive, long recovery and it would mean taking out my gallbladder, common bile duct, duodenum, part of my stomach and a sliver of my pancreas. Unfortunately Dr. F performed the whipple procedure because he found cancer in my duodenum. The blockage was a tumor that engolfed my entire duodenum.

This surgery took 5 1/2 hours and I remember being put on the bed as they rolled me with a sheet, again nothing to compare the pain to. I had an incision 10inches long on my upper abdomen from right to left. There were 35 staples holding me together and he did an awesome job closing me up. I had 2 JP drainage tubes coming out of my right side to collect fluid. I have another NG tube in, but this time it's not nearly as painful as the first one except when the nurses would try to move it. I also have a urine catheter, so I have tubes coming out of everywhere at this point. At the time it seemd as though I couldn't get enough pain meds to stop the pain entirely, but I was on a lot of IV Dilaudid. I had a pump that I could administer more Dilaudid every 10 minutes and I could get a bolise every hour.

The morning after surgery Dr. F came in and told me that they performed the surgery and that they found cancer. I don't remember if he said anything after that, I just remember saying "wow" over and over again.

The best road to recovery is of course getting out of bed and walking. I was like you have got to be kidding. The day after surgery I didn't get out of bed but I believe on the second day I got out of bed and sat in a chair for 30 minutes. Each day got a little better, but having all the tubes coming out of me made walking a very interesting situation, but I still did it. After one week the NG tube and the catheter were finally taken out. This of course meant I had to go to the restroom on my own now and that was such a foreign experience because I couldn't bend and my legs felt like jello.

I stayed in the hospital for 4 more weeks after surgery, there were some complications like high white blood cell counts, so fear of infection and at one point there was a pocket of fluid that Dr. F though he would have to go in and drain it. Thank God that my body took care of it on it's own and no more procedures were needed. I did end up with 2 blood clots in my right arm where the PIC line was so they had to remove it and put in another line. This also meant that they started giving me coumadin and lovenox. I will be on coumadin until the end of the year and boy does that suck.

After about 3 months of not being able to eat solid food and being on TPN and then clear liquids, I'm not sure that I will ever eat jello again, then full liquids and mechanical soft food I finally get to eat solid food. You just never know how much you miss chewing until you can't eat anything solid. It was awesome!!! My stomach at this point has shrunk and I can barely eat 1/2 cup of anything. I've lost 50 lbs. or more from Jan. to June. I haven't weighed this weight since I can't even remember when. Very, very bad way to lose weight, but it has been a wonderful benefit.

During my recovery and each hospitalization my family and friends were/are the most supportive and have always been there for me. There were many times that I broke down just from being tired of being sick and no one knowing what was wrong with me. All the prayers and positive thoughts have helped me through this and continue to help me every day.

June 4th is when I had surgery and my recovery has been long but has also gone much better than Dr. F ever thought it could. Every day he came in he had a smile and was so happy that things were well that my recovery was better than he could have anticipated. Rob has been such an awesome support and I know this has and continues to be very hard for him, I can't tell you how much he means to me and I'm not sure I'd be where I am today without him. I couldn't have asked for better family and friends to help me get through this, everyone has helped me when I'm down and have just been there so I wasn't alone. My mom has been there with me everyday and she is without a doubt the best mom in the world. Krystal stayed at the hospital over night on numerous nights just to be there with me and that was priceless. Visits from family and friends was great even though they saw me at my worst but of course were/are extremely supportive with positive thoughts and prayers.

I've had an oncology appointment and it was decided that the best route is to do chemo and radiation. Since duodenal cancer is rare, not much research, if any, has been done to know the best course of action to take. So we're doing everything we can to ensure the cancer doesn't come back. This last Thursday I had a radiation appointment to put the markers on me and do a CT scan so they have a baseline to work with. They had told me that they were going to "tatoo" me at this appointment and my take on that was that they would use the purple surgical marker to mark me since that stuff takes forever to come off. No, they literally tatooed me, prison style. The nurse marked me with "X's", 3 down my abdomen and one on each side, right and left. She then put a drop of black ink on my skin and used a needle to get the ink under my skin. There goes the bikini I was looking forward to wearing....ha ha ha. She said I could have it made into something prettier once this was over. I think not. I don't particulary want a tatoo down the front of me like that.

My first chemo appointment is on August 24th. One of the common side effects is loss of hair so in preparation, mom and I went and had our hair done today. I believe this is the shortest I've ever had my hair in a very very long time. Very liberating and different. Over the last months I've been losing large amounts of hair due to stress so this helps with the transition of having no hair at all. I'll be posting a new picture soon as I don't look like the current picture.

I want to thank everyone for all your support and prayers and keep those prayers coming as this journey continues towards recovery. I can't express how much you all mean to me, your love and support is overwhelming and greatly appreciated.

I will continue to journal and update you about my experiences and the process and progress that is to come.

Until next time
Kate