Friday, June 29, 2012

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.

Saturday, June 16, 2012

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!

Sunday, June 10, 2012

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. happy.gif

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 happy.gif.

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).