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Thursday, April 30, 2015

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 sensation of something. I don't know what it was - being disconnected or something. On the way home I could hardly stay awake. I was light-headed and overly exhausted. I didn't sleep well last night either and still feel exhausted. I am going to try to walk some out in the yard today. I'll use a stick or walker to help me keep balance and see what happens. I can tell you now, I won't go far.

My mother left for Houston today. She has been my helper during the day and staying with my sister. My dad and sister have also been coming around. My dad is back and forth all day between here and there. He is too deteriorated to really help me. But somebody nearby is comforting. So today is my first day totally alone. I have to admit I'm a bit nervous about it, considering the sudden, unexpected changes after the pump was removed. I do remember a man on Monday looking over at me and asking "does it just drain you completely after your chemo". I didn't know at the time, but "yes it does mister".

My mother will return in a couple of weeks. My sister will be around to check on me this evening. My dad will call periodically to check on me. I have emergency numbers if I have questions. I will be fine.

I have found that the homemade chicken soup my mother made is one thing I can eat well and has a good taste. So I had some for breakfast. The books say to eat what you can, so I'll eat chicken soup for a few more days. There is plenty in the refrigerator that I can heat up by the bowl in the microwave. Thank God for mothers! My sister has taken to the new cookbook that was sent to me by one of the drug manufacturers. She also provides meals for me that work with my treatment. Thank God for sisters! My dad cannot do much at all for me, but he does keep a check on me and keeps a roof over my head. He's the kind of person who has always helped others when in need and expects nothing in return. Thank God for dads! What do people do who have no one. I am so fortunate to be born in a family that rallies around and helps.

I'm now on 8 medications at home. Have to pay full price. I still owe $800 on the PET scan. I owe $4,000 on the liver biopsy. I owe who knows how much on the chemo. And the $4,000 to the anesthesiology. I can't remember the rest. I think I'm up to about $10,000 or $15,000 in debt right now, and I've only completed one round of chemo. It's going to be a long haul.

I just warmed up some squash soup my sister made last night. It was so good. I have an avocado with sour cream warming up on the counter to eat when I can get the gumption. I've never had trouble drinking plenty of water, but it is a struggle now. I keep on sipping and try to get at least the minimum amount. I've been so exhausted all day.

Thinking back to last summer and this beautiful plate of homegrown tomatoes. No more of those for a while. This is the second year I have been barred from eating tomatoes, both times due to cancer. They are one of my most favorite foods. Look at that plate.

I cannot eat these!

Monday, April 27, 2015

Chemo Day #1

me age ?
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 the chest port. That is to be worn for 2 days at home, and then a return trip to have it taken out. Still there is no sensation or feeling of medicine going in.

Changes

I was warned again about side effects of one of the drugs, Oxaliplatin. I was told I would experience electric pain and sensitivity to cold in my mouth and hands and feet. I either forgot or didn't think it would happen so soon. But as soon as we left I took a drink of cold water and realized what electric pain means. It hurt. No more Sonic slushes for me this summer. Anything I eat or drink has to be as warm or warmer than room temperature. I also found out that very tasty food hurts in its own way. I ate some berries that tasted so tart it hurt too. Even drinking water slowly feels like trying to swallow with tonsilitis or strepthroat. Touching things in the refrigerator hurts my fingers.

Another change was psychological. For the first time I was hit in the face with just how bad my cancer is. I am Stage IV Metastatic Colon Cancer. I am on Chemo. This is serious. But I also felt pumped up (play on words here). I managed to go to a Relay for Life captains meeting and arrived home exhausted. In all I notice a fine line between warm and cold. If I move my hand or foot from a warm spot in the bed, it feels super cold in the new spot until my body warms it up.

I go from cold to warm all day and night. I have to stay out of the sun, yet try to walk some everyday. I wish I could go outside and work in flower gardens or the yard. It's been so long since I have been able to do anything like that.

I'll talk about the pump experience after having it removed.


Friday, April 24, 2015

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 where she's coming from. Even at 53 a child is a child, and no mother wants them to hurt or suffer. She's a real trooper!

Still  FIGHTING  ON!


Wednesday, April 22, 2015

Biopsy Again

high school senior photo
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.


Thursday, April 16, 2015

Chemo Not

my sister and me (age 1 1/2)
Cheryl & Darryl
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 sore. I am tired. I feel great! Getting fresh air and sweating it out gives me strength and life force. Thank God I can do it.

I will keep writing about my experiences and intend to journal my chemo experience from my chemo chair. So keep up with me if you can.

Remember the link to share is darrylcurtis.com

FIGHT  ON!


Tuesday, April 14, 2015

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/

Thursday, April 9, 2015

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 she ever goes to curtistown.com and sees the video. They had given me a benzodiazepine. I was loopy.

Now I rest only and do nothing for 2 days and then take it easy for 2 more. Next step: port insertion. Then chemo.

All in all the experience was not as bad as expected. Thank God for my good care, good support system and wonderful professionals.

FIGHT  ON!

me the pirate, age 10

Tuesday, April 7, 2015

Chemo Class

me age 10 . chicken boy in a sailor hat
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. I dread the biopsy a great deal. It's going to hurt. But when it's over, it's over and I will move on to a steady routine of chemotherapy and CT scans.


Thursday, April 2, 2015

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:
  1. liver biopsy
  2. port insertion
  3. chemotherapy
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

my high school graduation photo

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