Small update, Lots of memories and Girls Camp 1984

  So I decided I'm going to use this blog as a journal/memory keeper of sorts. Not just cancer updates.  I want to save memories for my kids to be able to read in 20 years :).  I'm going to go back in time and record memories of my childhood, my children's births, wedding day ALL that I can remember.  I also want to ask a favor.  Use my email address lisaanniepants@gmail.com  and send me memories.  If you have a funny story, or any story that involves me I want you to send it to me. (PICTURES too please!!!) I am going to include those emailed memories in my blog. Not only will I get a kick out of it, but my kids will too. And it will help them know me better.

    So I have been having a big ol' pity party lately.  I guess I'm entitled because cancer and everything that comes with it really sucks.  Everyone is entitled to occasional pity parties as long as your life doesn't become a pity party. People that are in a bad mood or a "poor me" state of mind get on my nerves.  :)

    So I am feeling better emotionally (not so much physically, but I'm not going to go there right now).  I started taking my chemo pills again after taking a break for a few days.

   Part of my personality that really annoys me is that I have such a hard time asking for / receiving help.  No matter what kind of help it is.  I feel guilty.  Why is that?  Do I need help?  Yep.  But when someone actually does, it makes me cringe.  What is wrong with me?  I used to get meals. Gals would come over and straighten up the house.  I stopped it all.  Because I can do it myself.  I can cook, I can clean, I can drive myself to chemo. Even if I don't feel good most of the time I CAN DO IT.  I'd rather do it myself. It's not that I don't appreciate help. I really do.  I just have a hard time with it all. Always have. Any advice for me?  Why am I like that?

    Another thing that bugs me, is I am such a homebody.  It doesn't bother me at all to just be at my house alone. Don't get me wrong, I like being around other people (mostly my family). Being introverted bugs the heck outta me.  Such as...my wedding day was horrible.  Not because it was a horrible day, it wasn't. It was an awesome day.  But I hate being the center of attention.  And a bride is the center of attention.  All those people, and having to talk to them. EEK.  I just wish that I was the kind of person that could just go up and talk to people. BUT....once you KNOW me, and I feel comfortable around you, the real me comes out. And to tell you the truth I'm pretty much a weirdo. ;)


     So I was talking to my kids this morning and somehow ended up telling them a few stories about Girls Camp.  I'll share them with you.  Advanced warning....I have a weak bladder. Always have.  Especially when laughing.  We were lucky enough to be in cabins. I had taken a shower and had come out with a towel wrapped around me. My friends Jenni and Shannon were looking out the cabin door, exited about something.  I think they said a snake or a lizard. So of course I wanted to see it.  So to the door I went to have a peek.  They proceeded to yank the towel off of me, shove me out the door and lock it.  I was laughing, banging on the door begging them to let my naked self back in.  When they finally opened the door, all that was waiting for them was a puddle. :)  I had peed, then ran to the back of the cabin where there were towels and bathing suits hanging. I had to take another shower. At least I didn't pee my pants ;)

      Stephanie, Kara, Chloe, Jessica in their side of the cabin

(Jenni, Shannon, Susie- Girls camp)

   The last day of girls camp we have a "testimony meeting".  Anyone who wanted to would get up in front of the group and described what they had learned, friendships that had been made, lessons that had been learned etc. It was a very emotional meeting, where most of us girls were crying and listening intently. The scene was a half dome of stairs/seating with a fireplace at the bottom where the girl/leader speaking would stand. I was seated at the top of the stairs next to my friend Shannon. We were 12.  She started complaining that she was having cramps and thought that maybe she was going to start her period.  I chuckled a bit and whispered to her that it was probably gas pains.  Not more that 10 seconds later the quietness was broken with a very loud fart coming from Shannon's butt region.  Of course everyone turned around to stare.  Shannon proceeded to shove me and say "LISA!" Everyone thought it was me!  Of course being me I start laughing. I peed. Again. My urine started cascading down the stairs/seats toward others.  I spilled my hot chocolate on purpose, trying to cover the accident.  My friend Jenni went and fetched me a sweatshirt which I tied around my waist so I could go back to the cabin and change. I got back at her that night with shaving cream and toothpaste filled oreos,

                                                        Shannon waking up to shaving cream :)

Jenni, Suzie, Shannon, Jana....with our camp flag. We were the "Giving Pack Rats". Every cabin had their own flag and animal for their theme.

 Me on my camp bed.....this must have been about 1984?  Loved my Cool Ranch Doritos. Notice the picture of my cat on the wall?

Jenni on her bed.  Love the fact that she brought posters.  Michael J Fox and Rob Lowe.  Jenni has been one of my best friends for over 30 years and was my maid of honor at my wedding.

End of Summer update

  My last cat scan wasn't good. It showed growth in the tumors that are in my liver. We counted a dozen tumors and stopped there. Liver re-section is out of the question because of the amount of tumors I have and their location. So basically unless there is a miracle, I will just continually be on chemotherapy.

  Once the chemo stops working I am a candidate for Y-90 radiation (I think I explained this in an earlier post. But if you are interested you can look up the information on it here: http://www.sirtex.com/us/.

  When I first started chemo I brought home a fanny pack full of chemo that pumped into my body for 48 hours. This time I am going that again, except it is in pill form. I still go in every other tuesday and get an infusion of avastin. Then the pills (called xeloda) are 7 days on, 7 days off.  My insurance (whole story in itself) was being a pain in the butt, but I finally got them (can we say expensive?).  They aren't too bad. I take 3 pills in the morning and 3 with dinner. They make me tired and nauseated but that's it. I can take anti-nausea pills and usually I'm fine. (I did get sick once.)

  So my insurance was Blue Cross/Blue Shield of Oregon. Awesome insurance. Premiums were $520 a month, but they paid 100% after I met my deductible (which I did after my first appointment in January). Then come July 1st I got forced to switch to some federal  pre-existing condition insurance. My premium dropped to $417 a month, but this insurance sucks. They only cover 70%. When your medical bills are over $10,000 a month this leaves a mighty chunk left for us to pay. Not gonna happen. We would starve. So I do my best to ignore the bills. (Not the best way to deal with it, but at this point I don't know what else to do.) Plus I had to re-pay the deductible.   It's total crap. Luckily the insurance stuff changes come October 1st. I'm hoping to get back with BCBS. But that also means re-paying my deductible. (That will be 3 times I've paid my deductible in 2013 if you've lost count.)  It's just crap that people with cancer have to worry about all this financial BS when we should just be focusing on fighting this nasty disease.

  On a better note, I am going to Washington D.C. and Florida in October. Mostly paid for! (Colon Cancer stuff, more info later) I am so excited! I will need a little money.

  I am thinking about selling a few quilts to help out with the costs. I have a blog, where I have pictures of some of the quilts I have made/sold in the past. (You can see them here :http://raggedyanniequilts.blogspot.com/   If anyone is interested get ahold of me through facebook, or emailing me: lisaanniepants@gmail.com, or you can send me a text (541) 212-0606.  They make great Christmas presents!

  I'd like to thank everyone for your continued thoughts and prayers.

  

I'm a slacker...

So I've really been slacking with my blog. I'm going to try and be better about it because I know that quite a few people use this to keep up with what is going on with me.

Right now I'm still doing the "every 3 weeks treatment". My schedule for June is chemo on the 3rd, CAT scan on the 17th and chemo/CAT scan results June 25th.

I'd been not feeling too well. I have had 4 episodes of bad upper stomach pain that would last for a couple days, accompanied by nausea and an all around feeling of yuck. The first time it happened was March 30th (Saturday before Easter). I was sick all day Easter and finally went to the ER  Monday April 1st after getting the kids all in bed (didn't want to worry them). I had bloodwork done, and an EKG. Chemo can wreak havoc on your heart so that had me concerned. It can also cause blood clots, but all that was ruled out. They gave me strong IV heartburn medication which did nothing and sent me home.

We attended the NNU cancer awareness baseball game on April 20th. I got sick half way through the game with the same pain. It went away on it's own after a few days. When I went in for Chemo I was dehydrated and had protein and bilirubin in my urine. I got two bags of fluids along with my Avastin and was told to come back if my pain didn't go away.

To make a long story short, after several episodes of this pain, nausea and feeling like crap I did a lot of research because I knew it wasn't heartburn and I was getting scared and frustrated. When reading the side effects of all the medication I am on I came across Cymbalta (which I am taking daily for peripheral neuropathy, and one of the most common side effects is "Upper stomach pain, and gastritis". UGG. I hate the fact that I take one thing to help combat something and it seems to cause another issue which leads to another medication to help that issue etc. It's a vicious circle. So even though I knew from reading that there would be not-so-nice withdrawal symptoms from stopping Cymbalta cold turkey (mostly because it is also used for depression and anxiety) I quit taking it.  I have a little more numbness in my hands and feet but I haven't seemed to lose any motor function. I felt like I was losing my mind for a few days, but now....what a difference. No more chest/stomach pains! No more constipation. I feel like a new woman and things are looking up! Now as long as my scan results come back good I feel like I have a renewed hope. I was beginning to get really worried that something was just not right with my body and I thought something horrible was going on. I feel so much relief now, physically and emotionally. :)

My mom and sister came to visit for a week in April. We had a really good visit, but it is really hard to see my mom in the physical/mental state that she is in. She's in her 80's so I guess it is to be expected to some extent, but none the less I wish that she were in better health and it is hard to see a parent in that condition.

Not sure what to think.....

     Heard news I hadn't heard before. Everything is stable. No shrinkage, no growth. The same. The Dr. seemed happy. The nurses seemed happy. It wasn't what I wanted to hear but it wasn't the worst I could have heard. Keeping up the same regimen for the next 3 months then scan again. My red blood cells are almost normal (yay!) but my white blood cell counts were up a bit. Just going to keep a eye on things. My kidneys were hurting after my CT scan, so he thinks I probably had a small kidney infection that is clearing up on its own. (From the contrast stuff they have you drink before the procedure).

    I've been asked to give an interview for MSTI (Mountain State Tumor Institute) which is associated with St.Lukes. I think it's an on camera thing to promote the new hospital they are building in Fruitland Idaho where MSTI will be located in.

    Also they invited my family to a Northwest Nazarene University Baseball game on the 20th. It's a cancer awareness game. They will have activities for the kids, and a balloon release to honor those who have been touched by cancer. They are getting us t-shirts and hats to wear :) It should be an awesome experience.

Chemo #21

    Twenty One! Unless I have miscounted. ( Which knowing me I very well could have.) This week things went very well. When I went in for treatment three weeks ago, I had a lot of trouble with my port. They had need doing a lot of moves which made me look like I was doing Jane Fonda's workout. The moves did nothing but make me look like an idiot, and entertain my fellow chemo getters. :)  They put in some blood clot medicine, and after about 45 minutes in started working. It made me a little nervous, because if it didn't start working right I would have had to have a surgery done to put in a new port.

     In less than two weeks I have cat scan number five. And then on April 2, I will go over the cat scan results with my oncologist. I am still only on avastin which makes me really nervous for the cat scan results. Avastin is really easy on me.

The most common side effects of Avastin are:

Nosebleeds
Headache
High blood pressure
Inflammation of the nose
Too much protein in the urine
Taste change
Dry skin
Rectal bleeding
Tear production disorder
Back pain
Inflammation of the skin

     I haven't had any nosebleeds in a few weeks now.  My nose still hurts occasionally, which must be the "inflammation". I get tired easily, and get headaches on occasion. But other than that, I don't have any other side effects. Knock on wood. In my head I think because I don't feel like crap maybe the medicine isn't working. But my last cat scan I was "only on avastin", and it showed that my tumors in my liver were still shrinking.

     The neuropathy in my hands and feet seems to be getting better with the cymbalta. The negative side to getting the feeling back is that I have pain. The doctors are helping me manage it pretty well.

     One thing that scares me a little bit, Is the pain that I get occasionally in my upper right abdominal area. I'm sure it's my liver. I can only hope it's the pain of the cancer shrinking away.

   Anyone want to fork over a Hawaiian Vacation for Two in June? Jared and I will be having our 20th wedding anniversary!?!


   

   

The results..........

   I was happily surprised when the Dr. went over my CAT scan with me. The tumors are still shrinking!
So relieved :)

   I had another infusion of avastin. I will do just that for another 3 months, and then scan again.

   Another little bit of good news: I think the cymbalta is working (knock on wood). I can actually make a
fist, and I haven't had to take as much pain medication.

    Thanks for all the prayers/positive thoughts!

Another scan....

So now I have had 16 chemo treatments. I will go for my 17th on Tuesday.

Tomorrow morning  I have a cat scan. I am a little more anxious than usual, because I have only been on avastin since October instead of the cocktail of chemotherapy that I had been getting.  I'm hoping that it is doing a good job at keeping the tumors shrunk .

If the tumors have stayed the same size or have shrunk I think that I should be able to just keep on doing the avastin. Avastin is very gentle on me. It would be such a blessing. I am not sure what they will do to me if the tumors have gotten larger or if I have any new cancer.

I will find out what the results of my cat scan when I go in for chemo on Tuesday. Until then I am sure that I will be filled with anxiety.

Keep up the prayers,  please. I am doing my part and I hope that God is doing his.

Some good news...

NO new cancer, everything in the liver shrunk. Now I do chemo every 3 weeks instead of 2, and it's avastin only, which I tolerate well. I get to do this until January! Then another CAT scan. I'm so excited. I also got a prescription for my numbness in my hands and feet. I hope it works.
I have trouble typing so this is short. 

Frustration....

It seems like no matter what I try this neuropathy gets worse every day. My feet are 80% numb, with my big toe and the toe next to it totally numb. My fingers are 80% numb too. I can feel a little sensation, but not much. Things that I could normally do that I can't now.....Undo and do my bra, open lids, walk normal, among other things. I have trouble doing the girls hair, doing up my pants etc. It drives me nuts. My arms and hands are also weak. I have a tough time even making a fist.  I was so frustrated the other night I broke down and had a good meltdown. But on the upside, besides fatigue it is really my only other side effect that really bugs me.

A good note: My CAT scan was good. I will know more Tuesday, but I was told no new cancer and the tumors in my liver shrunk again. YAY! I should also find out if I am going to receive Y-90 radiation, and what kind of Chemo I will be on now. Lots of unanswered questions will be answered. Nervous but excited.

AND!....  I got my 40th birthday present early: Nice huh? I have always wanted one, it's my dream car.

Chemo #8

   So I get my Chemo ball taken off in a few hours.  It hasn't been too bad. Just a bit of light-headedness and some fatigue.
    I should be getting a phone call today from Dr. Handley's office.   He is the surgeon who does the y-90 procedure I talked about in a previous post. You can look him up here.... http://www.boiseradiology.com/Radiologists/InterventionalRadiology.aspx
He is last on the list.
    I will have a face to face consultation with him, and find out if I am a candidate for y-90.  I hope I am.  I would love to get it done, and finish my 12 rounds of Chemo, and maybe have some off time for the holidays.  I would love to go home to California and visit my mom and the rest of my family.  My mom is 81 and I really need to go see her. You never know what tomorrow brings.
     The kids start school on the 22nd.  Luckily we are all done with school clothes and school supply shopping!
     I am having a party on the 17th.  Scentsy, jewelry, pigging out, bunco.  Everyone is invited. 6-10 at my house.
     I am planning on having a coming off Chemo party in the future too!
    Thank you for all the prayers/ meals/ positive thoughts.  They help more than you will ever know.

Chemo Tomorrow....

Even though I haven't had a full dose of Oxaliplatin in a month, I am still experiencing numbness and tingling in my hands and feet.  I had a couple of times when I thought I was going to throw up.  Not sure if it is due to the Chemo or if I was coming down with a stomach bug, but whatever it was, my nausea medicine helped it go away.

I also had a reaction from my 5-FU that I have never had before....little blisters.  I had a few in my mouth, but not too many.  I also had them on the palms of my hands and the bottoms of my feet.  They were painful, but still not terrible. Usually I would have Chemo today, but this week it is Wednesday for some reason. I hope that I hear about the Y-90 procedure soon, and whether I am a candidate for it.

We were at the Oregon coast for a week.  The weather was wonderful, and we had a great time.  I'm glad to be home though.

CAT scan results.....

Nothing surprising, just basically the same as the summary I was given last week. No new cancer anywhere (YAY!) And the cancer in my liver is smaller. We compared the scan from March with the new one, and the tumors are definitely shrinking.
The Dr is sending my scans to a surgeon in Boise to see if I am a candidate for a procedure called Yttrium-90 Radioembolization. Y-90 for short. You can google it,  Or watch a video about it here : Y-90

I will know more about whether or not I will have this done in two weeks. I will also continue Chemo for 3 more months.

This time the Dr totally cut out the Oxylaplatin (this is the chemo that makes my hands numb, and makes it painful to eat or touch cold stuff.) The side effects are still with me even though he halved my dose last time. He does not want it to become permanent. I still got my 5FU + Leucovorin (IV+ 46 hours pump) and my avastin.

My iron level went up to 9.8...which is an awesome improvement. All my other blood levels are fine.

I am nervous for what is to come, but I am hoping that the Y-90 and the chemo will change my prognosis from non-curable to curable.

So things so far are going good. I thank everyone for their prayers :)

My first "Let's see what's going on" CAT scan...

My appointment was a 8am Tuesday the 17th. I met with the CAT scan lady, she gave me a nice drink (ick) of orange soda mixed with contrast dye. The dye makes structures and organs easier to see on the CT pictures. That was unpleasant. After a while they took me back to the room with the machine. Jackie was there from MSTI (Mountain State Tumor Institute) which is practically right next door to access my chest port so that I wouldn't have to have an IV (for more dye which is put right into the vein). She tried to access it twice. It wouldn't work. She left the second try in my chest so that I could get a chest xray to see why it wasn't working. So I had to get an IV :( but it wasn't too bad. The scan itself only took 10 minutes max. The IV dye makes you feel hot, weird and like you peed your pants. Luckily they warn you ahead of time so you don't freak out..LOL

I went and had a chest xray, and walked over to MSTI to wait for the results. I didn't have to wait long. It was in the right place. Now I was facing another surgery to have another port placed. The Chemo that I am on cannot be given with just a normal IV. I have to have a port. I was getting pretty bummed and nervous. One of the nurses, Mandy suggested that we try a new box of port needles. She had heard about some defective ones. As much as I didn't want to get jabbed again, I wanted to try. Anything to avoid surgery. Jackie took out the second needle and put in the 3rd out of the new box and TADA! It worked! I was so relieved, and so ready to go home.

So then the waiting started. Jackie said I could call MSTI the next day and they would have my results. I stalled and didn't call until Wednesday afternoon. The lady I talked to said I needed to wait until Tuesday when I had my next Chemo and my next appointment with my oncologist so he could review the results with me. Ugg. So then I started thinking the worst. Jared knew I was freaking out a little and called MSTI and asked to talk with Jackie. She pulled the results and read the summary to Jared. He handed the phone to me, and Jackie read the summary to me. The only things I remember and that actually made sense to me were "No new Mets" ( so no new cancer ) and the words "Significantly smaller". YAY! Not exactly the "we can't see any cancer anywhere" answer that I wanted. But very good news.

Tuesday I will get to get more detailed results from my doctor. But I happy with what I know so far. I hope that Tuesday will bring more good news :)

Thank you for all the prayers and positive thoughts. They are working!

I need to learn not to assume....

So I assumed because I was scheduled for a CAT scan that that meant the end of Chemotherapy for a while. I assumed wrong. I have 3 more months of Chemo. I was really bummed when I heard this, but oh well. I have no choice.

My neuropathy didn't fully go away in between treatments this time so they cut my dose of oxaliplatin. They also had me get Glutamine. It's a powder that I have to take 3 times a day. It should help with the neuropathy and possibly with the heart burn.

My CAT scan is scheduled for next Tuesday (the 17th). Then I have Chemo again on the 24th. Then again every two weeks until I have 12 completed.

Chemo hasn't been too bad this time. Probably because of the lower dose. But the last few times I haven't felt the effects fully until Friday. So we will see.

I will continue with what the doctor wants me to do. All I can do is put my trust in the people at MSTI (Mountain State Tumor Institute).

Sort of Normal Today....

I am finally feeling better today, except for chest pains brought on by acid re-flux. The chemo effects my stomach, and my intestines along with just about everything else in my body. So instead of the throwing up (which I am sooooo glad I haven't done, yet) I have chest pains whenever I swallow. It feels like I am having a heart attack. But I know I'm not. I went to the MSTI clinic yesterday and got a prescription for prilosec and zantac. It helps a little. Within a few days it is supposed to help quite a bit. I hope so, because I would love to eat without having a "coronary" every time I swallow something.

My neuropathy is still bothering me, but it is getting a little better every day. I'm sipping on a cold pop right now, and as long as I just sip... it doesn't bother me much except a little tingling in my lips and tongue. I should be able to eat ice cream, maybe by tomorrow.

I am so glad I only have one more treatment. I'm not sure my body could take many more doses of this potent stuff. But really I have nothing to complain about. It could be so much worse. And in 3 weeks I am going to have my CAT scan, where they miraculously won't be able to find a single cancer cell in my body :). Because my Father in Heaven knows that it isn't time for me to be with him yet. I have sporting events to attend for the next 10 years (at least).I have sons who are going to need me to tell them whether they have picked the right girl. I have daughters that need me there to help them get ready for Prom, and weddings, and make sure their husbands are treating them like queens. I have lots of grand babies in the future that are going to need a grandma. And I have a husband who would be lost without me. I can't go anywhere. Not for at least 40 more years. No negotiations.

Chemo #5

Getting Chemo isn't too bad. With the port I have in my chest, it really doesn't hurt at all. It is a little annoying sleeping with a fanny pack on for 2 nights, but I am getting used to it.

The effects from the Chemo get worse each time. It's Friday afternoon and I'm still not feeling too good. My hands are aching from the neuropathy. I just feel yucky, and tired. Nothing too bad. I can't complain too much. I'm hoping by tomorrow I'm feeling more like myself. At least I don't have all of the side effects. These are the main medicines I get along with the side effects that can happen: (Putting an * next to the effects I do have)

Side-effects of oxaliplatin treatment can potentially include:
*Neuropathy, (both an acute, reversible sensitivity to cold and numbness in the hands and feet and a chronic, possibly irreversible foot/leg, hand/arm numbness, often with deficits in proprioception)[8]
*Fatigue
*Nausea, vomiting, and/or diarrhea
Neutropenia (low number of a type of white blood cells)
Ototoxicity (hearing loss)
Extravasation if Oxaliplatin leaks from the infusion vein it may cause severe damage to the connective tissues.
Hypokalemia (low blood potassium), which is more common in women than men[9]
In addition, some patients may experience an allergic reaction to platinum-containing drugs. This is more common in women

FU-5 Possible side effects

Common

low white blood cell count with increased risk of infection
low platelet count with increased risk of bleeding
*darkening of skin and nail beds
*nausea
vomiting
*poor appetite
sores in mouth, lips, or throat
hair loss or thinning (may include face and body hair)
diarrhea
brittle nails
increased sensitivity to sun, with risk of severe sunburn
*dry, flaky, cracking skin

Less common:
darkening and hardening of vein used for giving the drug
headache
weakness
muscle aches

Rare:
trouble walking, trouble forming words, and poor coordination
irritated eyes
increased tears, watering eyes
blurred vision
heart problems (chest pain, heart attack, heart failure, changes in electrical conduction and more) that usually get better after the drug is stopped
confusion
*tingling, numbness, or swelling in the hands and feet
severe allergic reaction
death due to infection, bleeding, not being able to process the drug (DPD deficiency), or other causes

Avastin

*Scaly, peeling skin -- in up to 84 percent of people
High blood pressure (hypertension) -- up to 67 percent
Abdominal pain (stomach pain) -- up to 61 percent
*General weakness -- up to 57 percent
Infections -- up to 55 percent
Vomiting -- up to 52 percent
Upper respiratory tract infection (such as the common cold) -- up to 47 percent
*Fatigue -- up to 45 percent
*Loss of appetite -- up to 43 percent.

Constipation
*Nosebleeds
Diarrhea
Headache
Hair loss
Mouth sores
Muscle pain
Shortness of breath
*Dizziness
*Indigestion or heartburn
Changes in taste
Weight loss
Low blood pressure (hypotension)
*Nausea
*Weakness
Dehydration
Voice changes
Dry mouth
Skin sores

I'm pretty lucky that most of the side effects aren't affecting me.

My weight and my iron levels are staying the same, which is great.

I asked my oncologist what it next. I have my last scheduled chemo cycle on July 10th. Then a CAT scan around the 24th. Then we will go from there. I may be having surgery. Either to remove cancer from my liver, or I may be getting a radiation called Y-90. It stands for Yttrium-90 Radioembolization. It's basically little balls that contain radiation, that are put directly into the veins that feed the tumor. I think anyways. I haven't read about it too much.

My hope is that the tumors have shrunk enough to do a liver resection. I really haven't had any symptoms of cancer in my liver. No pain, no jaundice. If it wasn't for the CAT scan I would have no idea I had anything wrong with my liver.

I am hoping to have a little break from Chemo/surgery. But I have to do whatever I can to get rid of this.

Chemo #4

So I had chemo again on Tuesday the 12th. Which was my 19Th wedding anniversary. I actually felt pretty good afterwards and so Jared and I stopped at Brewsky's and had prime rib sandwiches.

Wednesday I felt ok, just a little weird. The thing that bothers me the most is the neuropathy. My hands can't touch anything cold, or it gives me a zap and makes my hands all tingly. I also can't eat or drink anything cold. It makes me feel like I am choking and makes my lips and tongue have the same tingly feeling that my hands get.

Thursday the fatigue set in. I could have slept all day. Baylee went with me to MSTI to get my beloved chemo fanny pack taken off. We stopped at Walmart to get prescriptions. First time since I have had my health insurance. It should have been way over $300 and it was $24 for 7 prescriptions. That goodness I have that insurance. It is expensive but well worth it.

Friday I started feeling better. My hands and throat are still bothered by the cold. I find that my hands, feet and my calves twitch. It doesn't hurt, it's just sort of bizarre.

Feeling pretty normal Saturday. Just a little more tired than usual, and not much of an appetite.

I have to say, Chemo has been relatively easy for me. It isn't pleasant. But it isn't that bad either.

Two more treatments, and then I have my CAT scan. :)

And on a good note, I was told that if my hair was going to fall out, it would have done so by now. Yay! Of course I chopped my hair thinking that is was all going to fall out. But oh well, I HAVE HAIR!

May 2012

My first chemo was May first.Jared took me, and my MIL Shari came for a while too. The people at MSTI are so great. It puts me at ease just to walk into the building. I didn't get the Avastin this time because it inhibits healing and I am not far enough from my surgery date.

I wrote this May 2nd, the day after my first chemo:
  "Chemo went fine. At first my port wouldn't work for taking blood, just giving meds. Had to have an x-ray. They finally put some blood clot meds in the port and then it worked both ways. I got anti nausea meds before, anti neuropathy meds before and after, steroids. Then my two different kinds of chemo. I also came home with a fanny pack full of chemo that will get removed tomorrow.

I feel OK. Haven't had to take any anti nausea meds yet (the ones they gave me yesterday are supposed to last for 48 hours). I just feel all around weird. My brain is in slow mode. My body is just tired and just off. I don't feel bad, and I don't feel good. I guess that is good news.

I have some neuropathy side effects. If I drink anything cold, if makes me feel like I have something stuck in my throat. Nothing with my hands or feet yet.

So I am just sitting/lying around today. I can get up for a while but then I need to lay down again."

May 11th was the night of my benefit dinner and auction.  I cannot express enough my thanks to my friends who put it on for me, and the people who donated items and money for me and my family. It was a totally awesome experience. I love living in a small town. People are awesome.

My May 15th Chemo went well. Pretty much the same as the first except I had my Avastin this time. No new side effects except for in my hands.  They freak out if I touch anything cold.

May 29th I went in for my 3rd round of Chemo. I was scheduled to have iron transfusions that would be twice a week for 3 weeks.  They always do a blood test first to make sure you are healthy enough to get the Chemo.  My red blood cells are getting better on their own, so for now my iron transfusions are on hold. YAY!  No new side effects.  Little nausea, a little fatigue.  The cold sensitivity in my mouth, throat and my hands were worse. But I can live with it. 

April 2012

     So we had to wait until Tuesday April 3rd to see my oncologist. I had an appointment at MSTI (they call it Misty) which is the Mountain State Tumor Institute, in Fruitland. I hated waiting to know more about what we are going to do. Or how bad it is.  When the Dr. talked to Jared after the colonoscopy, he said that he wants to do the surgery to remove a foot or so of my large intestines.  He said he wanted to do it ASAP so that I could quit bleeding, and I can get my blood levels back to normal (or close) before I start Chemo. I'm wasn't  sure if they would try and do something with my liver during the surgery or not.   I did know that my liver is still normal sized from the CAT scan.  My hope was that maybe the spots of cancer were all on the surface and that they could laser them off or something simple.  They told Jared also that when they do the surgery they will remove all the surrounding lymph nodes. They are enlarged,  so I  assumed they are cancerous because the Dr. said that Colon cancer follows a pattern normally that goes Colon, lymph nodes, liver, lungs.....

 I wrote this to a friend "So I applied for some insurance the hospital told me about. It is called the Federal Medical Insurance Pool. FMIP. They should accept me. My Dr. sent a letter to them with my application with my diagnosis, and according to the handbook they should have to accept me. It's pretty expensive ($450.00 a month, which is cheaper than the 750 that we thought the premiums would be) but it is actually pretty good insurance which hopefully will keep us from going bankrupt. With what I have had done so far, my bills are already over $10,000. And it's only been 8 days. HOLY COW! The insurance would sure help with my stress."

Jared worked Saturday and Monday.

Tuesday came.  We went into see the Dr.  I had googled stuff about my CAT scan earlier, so when he told me stage 4 colon cancer I wasn't surprised. I also knew what stage 4 meant.  Incurable. Death went through my mind.  Jared raising the kids by himself.  Pain. Sickness. Chemo. He showed us the CAT scan.  My liver was just full of cancer. Not what I had hoped for.  I hate what is written on my diagnosis sheet.
"Stage 4 Colon Cancer. Technically incurable, but we will treat you to help you live as long as possible.
Treatment: Surgery First
Chemotherapy: 5-FU
                          Oxaloplatin
                           Avastin
                          Given every 2 weeks. Combination of IV's
Port placed at time of Colon Surgery."

The next day they called me to schedule my surgery. It was the day after Easter.  I would have to do another clean out, so we had our Easter celebration and dinner on Saturday.

My friend Shelby came up on Sunday evening, and stayed until Thursday to take care of the kids.  It was such a relief to me to know she was there and that I didn't have to worry about my kids at all. I could just focus on me.

The surgery went well.  They took out the bad part of my large intestines, and put it back together.  Removed all the surrounding lymph nodes.

When I woke up I was in no pain at all.  A little bit of a sore throat from the tube they had running through my nose, down my throat and into my stomach. I had a pain ball, which was in a purse thingy, and it had two tubes coming out of it, putting pain medicine directly into the incision.

I'm having trouble remembering too much from the day of surgery, so I am posting an update that my friend Shelby gave to a bunch of wonderful friends I call my "Sista's"

"hi! So far, so good. I talked to Jared a few minutes ago. He said Lisa is doing well and is resting.

I'm amazed at the amount of love and support. She has gotten flowers and cards. The bishop's wife has called me a couple of times a day to make sure everything is ok here. The kids are doing well, considering all things and have been really really great.

They stayed home from school today and we went to the creek and skipped rocks, and then I came back home and made scones for lunch. I just painted cute Baylee's nails. They are really really great kids. Lisa has done an amazing job with them. I'm grateful to have been able to spend some time with them. I love them!

We are going to be heading in to the hospital to see her in about an hour. The kids are missing their mom, but have really just been so good. When we saw her yesterday, she was pretty wiped out (understandably so.) She was so good with the kids, though. It's no question that she is a GREAT mom all the way around. I'm grateful to be her friend.

Jared said that she was able to walk a little bit today, so this is good. And she is very hopeful to be out of the hospital in the next day or two. I don't know what the likelihood is of that. I haven't asked any questions.

Keep the prayers coming! I know I can feel them, I'm SURE that Lisa can."

The amount of support I got while I was in the hospital was overwhelming.  Like they say, you find out who your friends are.

I got to go home from the hospital Thurday around lunch time.  It felt so good to go home.

Sunday the 15th I pulled out the weird tubes out of my belly that were hooked to the pain ball. It was pretty nasty but cool at the same time.  It's amazing how far those tubes went inside my body. And it didn't hurt to take them out.

Moday I took out 3 of my staples.  I procrastinated and took the rest out Tuesday.

April 16th I wrote to a friend " I went to a genetic counseling appointment. They think I may have Lynch Syndrome. People that do have a 70% chance of getting colon cancer and /or uterine cancer. So if I have it, each of my kids have a 50/50 chance of having it also. Which means yearly colonoscopies starting at age 20. And also the girls need to have total hysterectomies as soon as they are done having children. Scary, but she thinks my chances of having it are only 20% or so. I will know more in about 3 weeks. They are testing the tumor first, then we will go to blood if needed. The appointment exhausted me, but it felt good to be out of the house for a little while.

Everyone who sees me says how good I look for what I have been through. That makes me feel good.

I'm still set to start Chemo on the 1st of May. I have all the information about the 3 types of medication I will be getting, but I haven't looked at them yet. I just want to give myself a few days of as little stress as possible before I start reading all the lovely side effects of the medicine.

Baylee's birthday was the 16th too, and all she wanted was for her and I to go shopping and go to lunch at Olive Garden. She is being a trooper, knowing that I can't do that right now. Hopefully next week. But I still feel guilty, like I ruined her birthday.

I love every little bit of help that has been sent my way. It helps more than any of you will ever know.

I haven't had one bit of blood in my stool since the surgery. Even thought the Dr. said I should expect it the first few times I went. I feel a bit stronger every day.

I love my kids and Jared so much. I am hoping that there is a miracle in my future. I just want to be here for my kids. My life is very scary right now." 

The testing they did on the tumor turned out to be normal, so the likelyhood that I do have Lynch syndrome is very small.  No more testing for now. What a relief. I was really scared for my kids.

I posted this to friends on April 24th: 
"So for about a week now I have felt really good. Better than I have in months. I am trying not to overdue it, but it just feels so good to feel good. I am going to try and en joy this week as much as possible. Chemo starts next Tuesday and who knows how that will effect me. I sure could use prayers that I may be one of the lucky people that Chemo is nice to. That would be a huge blessing. My kids do not need to see me sick anymore.

Yesterday in the mail, I recieved a letter from Blue Cross Blue Shield of Oregon. I have to sign something and send them something, but the line in the letter that has me so happy is this " You are eligible for an APRIL 1, 2012 effective date"! That means I will be insured. And that it will cover my surgery! I know that the hospital portion of the surgery all by itself is $30,000.00. What a huge burden lifted off our shoulders. Now I will only have to worry about things that happened before April 1st. The monthly premium, gas to go back and forth to treatments and appointments, and prescriptions....which with this insurance can be no more than $70.00 and as cheap as $5 or $10.

A great friend of mine is heading up a fundraiser for me, along with a bunch of other wonderful friends. They are doing a dinner/auction for me at the high school on May 11th.

Cancer sucks. Death hanging over my head by a thread sucks. But the blessings, the love, the help. Amazing."

March 2012, The month my life changed

So, I hadn't been feeling good for a while. I guess around the holidays. Night sweats, nausea, fatigue, running random fevers with no other symptoms
of being sick. I was having blood in my stool, but I had on and off for years. Freaked me out a bit but not much. I just figured I had a hemorrhoid or something. Kept feeling worse and worse.

I kept losing weight. Then more blood. Alot of times it was just blood and mucus. I tried getting on health insurance before going to the Dr because I knew it was something bad. But it didn't work, and open enrollment for Jared's work wasn't until October.


I finally got scared and sick enough to go in even without insurance.


So I went in Thursday the 22nd. As I told the doctor my symptoms I could see his face change. I could tell he was really concerned. They did blood work, rectal exam, pap, checked all my lymph nodes that they were able. Manually checked for masses. Couldn't find anything.

Set me up for the CAT scan for the afternoon of Monday the 26th. The doctors office called me first thing that morning because they had gotten my blood work back. Everything was very off. So they wanted me to come in to check my vitals to make sure I was stable. That freaked me out. The nurses tone of voice scared me. I had to call into work and tell them I wasn't coming in for the morning like I had planned on. I cried. And I'm not a crier. My red blood cell count was 6.2. Should be 12 or over. Talked about doing a blood transfusion but decided against it. My white blood cell count was off, my liver enzymes were off.

Went to Caldwell for the CAT scan. I hated drinking the bottle of contrast, but managed to get it all down. They also gave me intravenous contrast that made me feel like I peed my pants. Luckily the nice lady running the CAT scan warned me ahead of time or I would have freaked out...lol.  It only took 15 minutes or so.  They put a rush on the results, As soon as I was dressed they told me to go back to my Dr's office in Vale, that he had the results.

We got back to Vale, and the Dr. asked me what was the worst thing I though it could be. I said Colon cancer and he said I was right. Mainly on my left side. I'd Having pain there. And there were also a dozen or so spots on my liver. And the lymph nodes around that area are swollen. I wasn't sure if they are just trying to fight this crap off, or if they were infected with too. Didn't ask.

So I went and saw a surgeon the next day, Tuesday the 27th. Just had a talk. He scheduled a colonoscopy for Friday afternoon.

So Thursday I did the dreaded clean out.  The worst part was drinking all that crap. I'd been feeling sick for months now, and it didn't help.

Friday morning I felt absolutely horrible. Very weak. Light headed. Just all around bad.

Went to the hospital, and of course they were running an hour late. So I had to sit there and fret about things.

Took me back, blew out me veins twice. (ouch)

They finally gave me the drugs to make me loo loo. I guess I was moving during the procedure so they gave me more.

The procedure took about an hour. They let me wake up all on my own, so I was out for 3 hours. When I woke up, I actually felt good. Better than I had in days. It was really bizarre because I expected to feel like crap and be really tired. I didn't even take a nap at all after the colonoscopy, which for me these days is what I do alot of.

Stopped at McDonalds on the way home. Actually ate the whole thing except for a few french fries. Some friends of mine brought over dinner and I ate again, and had a big bowl of ice cream too. (Eating has been an issue for me lately so I was excited).

So I have pictures of my colon now. They were worried about being able to get all the way through my large intestines with the growth, but they were able to .

They removed several polyps (I have picture of those too, very interesting) and then took samples of the tumor which is about 2 inches and shaped like a horseshoe. It blocks off about 2/3 of my large intestines but things can still get past there. I have had alot of cramping though, which I'm sure is stuff sort of getting stuck there a bit. They sent the pieces of the tumor to pathology. (I have a nice picture of the tumor too).