Skip to main content

Posts

Showing posts from 2015

December 2015 Update

It's been a while since I've posted an update to my cancer progress. The road got very bumpy there for a bit. After my 11th round of chemo, I completely lost my ability to do anything for a week. I suddenly woke up one morning unable to lift my arms or legs.  It seems the peripheral neuropathy from the oxaliplatin affected me all at once. For the past few weeks I have been basically learning to walk again and use my hands. It is a very slow process. The doctor said it can take up to two years to get my hands and feet back to normal. And it may never go away.
My latest scan this week showed continued shrinkage of the cancer. I still have numerous (about 20) in my lungs. It will still be a long road before the cancer goes away completely, if it does it all. There is also still an 85% chance that cancer will return in my liver. But I stay positive and keep looking at what is good in life.
I'm still unable to type. I am using this voice transcriber on Google Docs to get my typ…

Thanksgiving

See all the individual photos on my Google+ by clicking below.

Latest Plan

The MRI and PET Scan showed continued shrinkage on places in the lungs and only a slight hint of the one on my liver. There was no problem with my spine, so the supposition is that the pain episodes were due to the neuropathy from the Oxaliplatin. The doctor decided to discontinue the use of Oxaliplatin so as to not make the neuropathy worse. He said some people end up in wheelchairs if their neuropathy gets too bad.

The plan is to continue chemotherapy with pills for another 6 months to a year. Dr. Brandes confirmed what Dr. Parikh said about the liver: There is an 85% chance of the cancer returning in the liver. So surgery is not off the table yet, just hoping we won't need it. Hopefully the chemo pills will keep it at bay.

I will have another portagram to determine if the blood clot is gone. If it is we will leave the port in temporarily for future infusions, if needed. If it is still there, then the port will be removed and another one inserted in the future, if I need it.

Al…

The Good, The Bad & The Ugly

The good news is that the MRI of my liver showed that the spot there is gone! The surgeon at Vanderbilt decided not to do the surgery and said this is a good thing.

The bad news is that my INR level was too low this time, so I started back on the Warfarin, but in a lower dose. Then on Friday my right arm started hurting very bad when I would use my shoulder to lift it. It was harsh pain too. It lasted all day and night. Then I woke up on Saturday with my left leg the same way. I was unable to lift my leg from the hip at all. And I mean using a towel to lift my leg to get into the car to go to the ER.

I had ultrasound and x-ray for blood clots or whatever else. They turned up negative. But they found an extremely low INR. So they prescribed the Lovenox shots twice a day. Now I give myself shots again twice as often. No reason for the arm and leg problems were found. The doctor said the best case scenario is that it is the neuropathy getting worse from the platinum-based chemo. I guess…

Ups and Downs

It has been a couple of rough weeks. It started with a portagram that showed a blood clot on the upper portion of my port. We had to discontinue using the port and start using Luvenox shots that I had to give myself in my belly. Then I started Warfarin pills to get rid of the clot. During my first blood test afterward, it showed my blood was too thin. I had developed bruising on my arms where injections and chemotherapy had been done (from not being able to use the port). The week was filled with chemotherapy, visit to the surgeon at Vanderbilt, and numerous blood tests. I think I was stuck 6 or 7 times in all.

Because of not being able to use the port my chemotherapy was cut to only Oxaliplatin, plus the pills that are taking place of the 5-FU. The Avastin and Fusilev was dropped a month ago in preparation for the liver resection.

The surgeon at Vanderbilt wanted more information before even discussing surgery. He wanted an MRI, which I had on Friday. He also wants all previous CT a…

6 Best Ways to Make a Friend’s Hospital Stay Better

1. Ask Before Visiting While many people appreciate visits, it’s not always possible due to hospital rules or how the patient is feeling. Call ahead to find out if your friend can have visitors and feels well enough to see you. 2. Help Out Without Being Asked When it comes to taking care of things back at the house, don’t wait for your friend to ask for help – they have so much on their mind. Just take care of the yard work and whatever needs doing. 3. Give a Goodie Bag & Small Gifts The most common advice: Give small gifts or a goodie bag to keep someone with a lot of time on her hands entertained. 4. Bring Reminders of Home Little pieces of home are a way to personalize a hospital room. Their regular pillow, favorite coffee mug, photos, or the local paper can help the new environment and schedule feel normal. 5. Feed Them A home-cooked meal in the hospital can be rare, so it’s extra-appreciated. For family of the patient, gift cards to local restaurants give them a change from t…

Cancer Updates

I had my second CT Scan after my 8th treatment. It showed more shrinkage in the spot on my liver and some of the spots in my lungs. The spot on my spine does not show up on CT scan, so that will have to be looked at later with a PET scan. So we are still moving in the right direction with chemotherapy; meaning we will continue on this regimen for at least 2 more months.

Some of the spots on my lungs are not shrinking. This could be due to their not being cancer spots. Apparently spots of debris breathed in from working so many years outside in the dirt get into one's lungs, according to my Oncologist. It seems particles of fungus and other stuff gets stirred up and settles in there over the years. We will have to eventually determine what those spots are.

I also might have to go into surgery, again, for a liver resection. The doctor will consult with my surgeon about that soon. If that happens I will need to stop the Avastin infusion 6 weeks prior. The surgery will have to be don…

Chemotherapy is Working!

It's chemotherapy week again. I got my Avastin today at the hospital and am staying the night. Tomorrow I get the rest of the chemo drugs and go home with the pump hooked to my "heart plug" (port). The port reminds me of the heart plug that Sting had in the movie Dune.

The good news is that my CT scan indicated that some of the 24 tumors are shrinking! This is great news. Things are moving in the right direction. It's going to be a long hard road ahead, though, with side effects getting worse and irreversible neuropathy.

Everything else is routine: Pump & Crash week, then slowly coming alive again, and 4 good days just before it all starts over again. I'm getting used to it. During the crash I keep my mind on the good days that follow. It's like the ancient warriors who fight an exhausting battle, then have a quarantine period to recover before returning to normal life; then doing it all over again for the next battle. Eventually those battles work to wi…

Smithville Fiddlers Jamboree

Chemo #5 Update

On the Way to Chemotherapy

Pump & Crash Week

It's pump and crash week. Chemo day was another very long day in the chair with all kinds of chemo infusions. I did not get my Avastin infusion this time, as the insurance decided that they will not pay for it at the oncology center. They will pay for it in the hospital. So from now on I will have to go to the hospital for my Avastin unfusion, then over to Oncology for the rest of my chemo. Sometimes I don't understand the insurance issues. That will make my days longer and with more running around and waiting.

This time I got nausea while still in chemo. I also got sleepy. The rest of the day I was down and out, came home and went straight to chair for the evening. Yesterday and today I feel better, but still with nausea. Insurance also denied my Zofran, so I'll have to rely more on the Compazine, which does not work as well. My pump gets disconnected today. The good part is that I don't have to drag that around with me for two more weeks. The down side is that my cr…

Notes for Caregivers, Family & Friends

Things other people do that help me:

During Chemo Days
Drive me to and from doctor appointments. It is sometimes too tiring to drive. When my pump is removed I crash right then and am unable to drive for several days, or even get up out of my chair.Sit with me during chemo to keep me company. Mine can last for 6 hours.During Crash:
Fix meals for me; either by bringing meals over or by fixing them ahead of time and putting them in individual servings for easy access. Actually bringing me food to eat at meal time and sitting or eating with me is most helpful.Offering a movie or some form of entertainment to help occupy my time. Even though I don't feel like laughing or smiling, it helps.Just having someone spend the day with me helps. They know I feel bad. They may do chores for me or just sit and knit, read or watch TV. Loneliness is worse when alone on crash days.During Up Swings:
Offering to do anything fun with me that I feel like I could do. Then realizing that I might get tired ve…

Pre-Crash Update

I get my pump disconnected today. It's a good/bad thing. The good part is that I get rid of the pump and don't have to drag it around again for 2 more weeks. The bad part is that I crash immediately after disconnect. That crash will last the rest of the week at least, maybe longer.

I also woke up with neuropathy side effects in my fingers. They tingle with no movement. They hurt when I touch things, like this keyboard, water glass, door knob, towel and everything else. The mouth thing is also back, making it difficult to drink enough water. I have to sip-sip all day very slowly. It's soups and stuff to eat for the foreseeable future. I also feel the tingling in my toes coming on. Seems like the side effects on this round are going to be a little worse. A new chemo med was added to my cocktail this round. That may be adding to the effects.

I deal with this by looking forward to my next good day, whenever that is. There will be one or two down the road.

Our local Relay for L…

Chemotherapy #2

For the love of mothers
As we got started with the IV tube into my port, I mentioned to my mother 'this looks freaky doesn't it'. In true mother form she replied 'No it looks completely normal'. I started laughing, then she added 'for a robot'.

All in all it was a good day at chemo. Of course having to get chemo is not good, I try to make the best of days when I feel good.

Be Strong, Fear Not
So the first person I met was sitting across from me. She was new (like I was 2 weeks ago) and getting it in her arm. I found out she is fearful of getting a port. So I showed her mine and expressed my same fears. I told her how it was for me and what it looks like when there is no needle in it and how the fear goes away, and the port does not hurt. The nurse there also did a very good education bit with her, showing a port example and all. In the end she was set up with an appointment with a surgeon to talk about it. I hope she decides to get one. She will be glad, as …

Happy May Day

Happy May Day!

I woke up this morning still tired and exhausted. I took two naps before lunch. Finally about 12 noon (48 hours after having pump disconnected) I start to feel a little more alive. I had the rest of the squash soup for breakfast. Later I opened a strawberry Boost. I finally got the feeling of nausea and could not stand the strawberry smell. So after one drink I threw it out. I took a Zofran this morning, but still felt on the brink of sick all day.

At 12:30 my dad came by and asked if I had eaten lunch. I told him no. He said he would bring something back from Rock Island Market, where he was going to eat lunch. He came back around 2:00 with a catfish dinner, fries, slaw and hush puppies. That is one of my favorite meals, so I desperately wanted to make it happen. I warmed it up in the toaster oven and decided to try the slaw in the meantime. I figured it had the least chance of making it down. It had warmed up enough on the way home that I was able to eat it. When the…

Pump You Up

Okay, pump experience - FREAKY!

Wearing a chemo pump around is not as easy as you think. There is always a cord hanging around. And one end of the cord is IN A HOLE IN MY CHEST. Sorry for cap font, but that's what it is like when I think it. It's hard to change clothes. It's hard to go to the bathroom. It's even harder to sleep. Between the chemo cord going off to my right from the bed and the CPAP cord going off to the left from my bed, it crazy. It's two days of thinking "am I going to get up to go to the bathroom and forget to drag the pump pack, jerking the needle out of my chest". I also came home with a chemo spill kit.

The pump thing has really hit me hard. I'm also still recovering from the port insertion at the same time. The big vein on my neck hurts. It had to be clamped or something for port insertion. So it has a healing cut. Then there's the cut above my port spot that is still healing.

As soon as the pump came out there was a sensat…

Chemo Day #1

Chemo YES!

At the doctors office we discussed the 2nd biopsy plans and chemo. I agreed with the doctor that having a 2nd biopsy would be painful and risky. It would also involve postponing my first chemo treatment for another week. So with the 95% assurance that my cancer is metastasized colon cancer in the liver and not something else, we chose to move forward with chemotherapy.

I was so elated I could have turned cartwheels down the hallway to the treatment room. I got a window seat for my first time. My mother was with me. It was an easy ride. The needle was inserted into the port inside my chest, and for the next several hours I sat comfortably. It was so nice to have someone there with me. It's hard to describe what it feels like to be so excited and fearful at the same time.

There were no sensations at all. I could not feel the medicine going in or anything. After the treatment, I was hooked up with a pump in a fanny pack. A tube went from the pump under my shirt and into th…

Port Insertion

I had my port insertion today. Loving Dr. White put me to sleep and when I woke up I had a port inserted into me. I also have another scar on my neck vein and the one from the hand IV. eeww

I'm tired and exhausted and on pain medication. Early to bed and late to rise this night. I'm a bit sore and hurt, but it's manageable. Totally easy compared to the liver biopsy.

I also got word that I will have another liver biopsy next Tuesday. Not looking forward to that. So far it's been the worst thing, though I know it's mostly psychological. My first chemo is set for Monday, but that might have to be rescheduled until after my liver biopsy results. That would be another week down the road. I am so ready to get that first chemo. Never have I been so excited to start something. But this is WAR, and I mean to go in running with all weapons drawn!

It sure was hard on my mother. I feel so bad for her, having a son with cancer and all. Only you mothers out there can understand …

Biopsy Again

My Circulating Tumor Cells test did not show anything. So I will need to get another biopsy. The doctor is going to see if the hospital will do it without charge. Sounds like he's asking for a miracle, but they've happened before. I'm still scheduled for the port insertion on Friday. My first chemo is supposed to happen on Monday 27. I think the new biopsy will put a kink in that. So I'm expecting for the first chemo to be rescheduled again for at least another week.

Now my anxiety turns to the expectation that they will have to cut more from my liver than they did the first time in order to get a good sample. And all in the same place as the previous, still healing cut. OOOHH. Not looking forward to that. Thank God for those girls distracting my attention with conversation during the cutting. I caused such a ruckus last time with the Dancing with our Stars stuff that they might not want to distract me. Ha. I may have lost friends or caused a divorce.


Chemo Not

Well my 1st chemo treatment did not happen yesterday.

My liver biopsy came back inconclusive. I gave blood for a Circulating Tumor Cells test to see if that brings any clarity to the situation. If it does, then chemo is a go for April 27, just 3 days after my port insertion. If it comes back unclear, then I will have to get another liver biopsy next week before the port insertion.

I'm really cheering for the blood test to show something tomorrow. That liver biopsy was so strange of a feeling that in my mind I can still feel it. There has been no other feeling about my body in my whole life like that. It was not a pain as much as something else. It makes me feel faint just thinking about doing it again. But if I do, then so be it. I go forward with gusto!

Having another biopsy also means 4 more days of rest after that. Not having one means I can get outside and work good and hard for a whole week before port insertion. I want and need that. I worked today until the rain came. I am…

Radiothon

I did 2 pre-recorded interviews at Peg Broadcasting last night for the Radiothon this Friday. They will be separated in time between 8am and 12noon. Listen in!

RADIOTHON
Friday, April 17
8:00am-12noon

Peg Broadcasting will be having their annual Relay for Life Radiothon on 960 AM.
Tune in your stereo or listen to live stream at:

http://www.960wbmc.com/

Guided Liver Biopsy

I had my liver biopsy today. I was at Saint Thomas Rutherford. As usual all the people that worked with me were kind, compassionate and knowledgeable. The biopsy was a very strange feeling. I could not feel the needle tool go in, but I could feel it inside of me when he touched the liver and made the cut. It was like an electric shock type of pain deep inside my body. It only lasted seconds, holding my breath. The entire procedure lasted maybe a half hour. Most of it was using the CT Scan to find and mark the spot precisely.

I came home and went straight to bed.

I made a big social mistake. I found out one of the people was from Rock Island. Then I got my names mixed up and thought she had danced in Dancing with our Stars for our Relay for Life Team. Turns out I was remembering the first name of one dancer and placing it with the last name of another dancer. I was talking to her as if she had surely danced. She must think I was spaced out. Hopefully she will realize what happened if s…

Chemo Class

I had my Chemo Class today. This was an orientation and education appointment to learn about what chemotherapy is like, what to expect, what the drugs are, etc. When they took me back, it was a shock to enter a room with over 20 cubicles with recliners. The walls of the cubicles were short enough to see everyone in the room as I entered. My first thought was "Wow, we all have cancer". There were some with IVs in their arms and others with IVs in their ports. I will be a port guy.

We went through a booklet about chemotherapy and information sheets on the drugs. Seems I will be in a chair of my own for up to 5 hours at a time in the beginning. Then I will wear a pump around for 2 days after that, with a tube that goes from the pump into the port in my chest.

They offer juice, water and snacks while there. They do their best to make everyone comfortable. Not much else to say at the moment. I have a lot of material to read and study up on.

Next step is liver biopsy on Thursday.…

First Oncology Appointment

My first oncology appointment confirmed my diagnosis: Metastatic Colon Cancer

The cancer has spread to my lungs, liver and spine. Plan of action involves:
liver biopsyport insertionchemotherapy As Dr. Seuss would most surely say, there is no time to delay, so we will start right away.
The chemo will last for months, with CT scans regularly. This summer will be a long haul. I look forward to continue working as much as possible in between my treatments.

I also took the weekend away from computer and Tower of Babel. My emails have stacked up, so I will try to answer each of them as I can get to them. There is still lots of work to get done outside, and I want to make the most of it.

To all my friends and family, my sister has planned a support quilt for me. This is sometimes called a signature quilt. Anyone who wants to make a note on it or sign it can contact her.
cheryl@curtistown.com


Benefit Fundraiser for Cancer Treatment Expenses

Benefit Fundraiser for Cancer Treatment Expenses
for Darryl Curtis
Friday, April 17, 2015
6:30p.m.

Hope everyone can come and join on April 17th for supper, dance and auction benefit to help Darryl Curtis with medical expenses.  Cost for supper and dance will be $10.  All proceeds from supper and auction will go to Curtis.  Come join us and kick up your heels to the tunes of the Gone Country Band.  If you can't make it you can still help out by donating items for auction or money.

John Henry's Music Barn
358 Norene Road
Sparta, TN

Trail of Tears Northern Route

This route goes directly through Curtistown. It comes out of the woods right behind the schoolhouse, that burned a few years ago, and then down to the end of Curtistown Road. From there it follows the old roadbed down the mountain below High Rock, then out into Irving College.

This has been a major hiking trail for me throughout the years.

PET Scan Results

I got my results from the PET scan.

The diagnosis is Metastatic Colorectal Cancer that has spread to my lungs, liver and spine. There are 22 spots on my lungs. One spot on my liver. One spot on my spine.

I will have an appointment with the Oncologist next week regarding any further tests and treatment plan.

It's going to be a long, rough road. I feel great knowing I have a fighting chance. That's all I have ever needed to make it back to the top.


Curtis' Second Round of Cancer

I got PET scan information today. It's the return of colon cancer and has spread to my lungs. We are also looking at liver and vertebral area. My next appointment is Thursday, when I will get the low down on the situation.

Remember the Trojans and
FIGHT  ON!


Happy St. Patrick's Day

March 2015 Checkup - Not so good

My March 2015 labs showed a rise in my CEA levels.  Now I prepare for more labs and CT scans.