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Thursday, December 17, 2015

December 2015 Update

Teen Cookie Day at Cher's
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 typing done. I have pencils that I use when I need to touch the keyboard with hands. It hurts for my fingers to touch the keys. It is a threefold barrier. 1- my fingers hurt to touch things. 2- my dexterity is still very bad. 3- My fingers are too weak to grab and hold things. It will be a long time before I can do things normally again. For example if I stick my hand in a pile of potting soil, it feels like I'm sticking my hand in a bowl full of thumbtacks.

All of my trips into town are medically related. Because I live in a rural area, I couple my medical appointment trips with grocery store trips and other things I need to do while I'm in town. That usually also involves eating lunch somewhere, because I'm out all day. I'm also very slow in my walking, so what used to take a couple of hours now takes all day.

I went to Gondolas for lunch before my doctors appointment. Gondolas is one of the few places in town I will eat, as I do not go to fast food restaurants, other than Sonic. I did not recognize any of the staff there. They all seem to be new. Or maybe it was just a different time than I normally go, and the normal waiters and waitresses were off shift. I don't know.  I went to eat on their buffet. After being seated no one came to the table to get my order, so after about 10 minutes or so I went ahead and got a plate of food. Of course I eat slowly to because of my hands.  I ate my salad and then went back to make the plate for my entree. It was as I was halfway through that plate that someone finally came up and asked if I wanted something to drink. I asked for water. Later another waitress came up and apologized for me not having a drink. She said Kevin got busy and could not attend to me. Then she asked if I wanted something to drink. I asked for water. By the time the water came I was finished feeding. So I went to the cashier and paid without leaving a tip. I feel bad for not leaving a tip, but there was no one that earned a tip that day. Normally all through December I leave extra large tips everywhere I go. I did not complain, because I believe that does not help. I usually just never return there again. I miss the old staff that was there before when I would go eat at Gondolas. they were always attentive and talkative to me. Maybe the new people will learn to do better soon.

Meanwhile I still have my favorite restaurant, J’s in the mall, Captain D’s, and Sonic. Life is good!

Monday, November 30, 2015

Tuesday, October 6, 2015

Latest Plan

Sodoku Puzzle Quilt, Top made by me, design by my sister and hand quilting by my mother.
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.

All in all things are continuing to get better, but it will still be a long haul. The pills cause the same symptoms as the infusion of 5-FU, so the crashing continues.

On the up-side, I have been off the platinum for a month. So today I had my first cold item to eat/drink in 6 months: a vanilla milkshake from Sonic! Ahh, and so begins my Summer!


Sunday, September 27, 2015

The Good, The Bad & The Ugly

Quilt made by my great grandmother Malone
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 my oncologist and I will hash all that out tomorrow and come up with a plan to find out more.

I finally got to the point where I can lift my leg and arm again today. Tomorrow is a hard-to-work-out transport day, so I figured I could drive the truck myself. I got in and did a practice run around the parking lot, but the air conditioner fan is broken. It makes me nervous to drive it, thinking something else might cause it to break down on me, but it might be alright. I don't know. So i guess I'll work out what I can with family. If I need to sit around a few hours, that's okay. But I don't want to put anybody else out. I'm running my sister too much.

I won't get into the ugly side of chemo side effects this time. Needless to say, it was not good. Those 4 pills, twice a day, for 7 days did a number on me.

Sunday, September 20, 2015

Ups and Downs

One of my tee shirt quilts, made by myself, my mother and my sister.
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 and PET scans. I have to go back to see him on Tuesday. I will have 2 different blood tests that day also.

The new pills cause me to crash over and over. I take them for 7 days, so the crash will last at least that long. Without my sister I would not be able to drive to appointments. I would be asleep and in an unreliable vehicle on my own.

During this time my aunt Carol Herman passed away from her cancer battle. Also my neighbor, Veronica Stewart passed away from her cancer. I was unable to go to either funeral due to my own battle.

Seems my routine for the past 6 months is over and now I am in chaos. I believe my surgeon will want a lung biopsy before surgery also. I hope they put me to sleep for that. The liver biopsy was the worst thing I have been through during this whole thing, due to being awake and feeling them cutting away at my liver.

Wednesday, August 19, 2015

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 the hospital cafeteria.

6. Offer Notes and Well Wishes

Whether it’s a card in the mail or a message on a CaringBridge website, encouraging words can go a long way to boosting someone’s spirits.

Cancer Updates

My parents & all their descendants together for the first time!
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 done at Vanderbilt Hospital.

My symptoms are are still manageable. I am happy about this, though they are not easy to deal with.

I still have super intolerance to cold. I wear polar gloves to get into the refrigerator and can only drink and eat warm or hot food and liquid.

I have the pins and needles in my fingers and toes as part of the irreversible neuropathy I am developing. My legs are weak. I can still climb a few stairs, but going down is rough. My legs become shaky and have no strength. I keep walking for exercise. Some days I walk well and others I don't. My legs hurt to the touch, maybe due to loss of strength or maybe due to neuropathy.

My nose hurts like crazy when I touch it. Blood comes out when I blow it.

I have very high blood pressure, especially when I try to become active. And I get tired from just walking around the yard.

Unlike most cancer patients, I keep gaining weight. I have not lost my appetite at all, but have little to no activity. This leads to my weight gain. It also plays into my increased blood pressure and fatigue.

I'm sorry about my phone situation, for those of you trying to call me. It only works when I'm in the city for medical appointments. That's just part of live in rural areas, so reaching me through email or google hangouts is still the best alternative.

Monday, July 6, 2015

Chemotherapy is Working!

My Mother & I at Smithville Jamboree
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 win the war. And thanks to the gift of Netflix from Jeff, I have expanded entertainment options during the crash. On there I can watch any Star Trek I want over and over.

Well, that's the good news for the day!
FIGHT  ON!

Friday, May 29, 2015

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 crash will begin right after disconnect.

I'll be sitting and laying around all weekend, and more. It's a long, hard crash, but I try to keep my mind on the hope that it starts to get better after a week. My friend Rebecca came all the way from Murfreesboro with loads of food, all put in individual containers and put them in the freezer. They are all foods I can eat while crashing, as she took special care to fix only what I can eat on those days. Then she came back the next day and hauled me around to doctors appointments all over McMinnville. I think she was shocked at how rapidly I crash and how easily fatigued I get, like just walking from the car into the house.

My dad and sister will keep a check on me all weekend. My dad is going to bring some biscuits and gravy over for me to have for breakfast this morning. If I can hold that down, I'll be good to go get my pump out.

Hair is still coming out. I should be bald within a few weeks. I've also learned that I can drink water more easily if I hold my head up like a baby bird trying to get food from it's mother's mouth. It freaks people out to see it, but it's the only way to drink. I have been eating lemons when I can get them. They taste sweet to me nowadays and seem to sooth my throat some.

I've been thinking lately about how much I miss Mexican food. I normally cook it often, but cannot tolerate the spices anymore. I'll be glad when I can have a big ole Mexican meal again. When this chemo is over I plan to have my favorite Mexican meal:  a giant Mexican shrimp cocktail, authentic tacos de carne asada with tomatillo salsa and jalapeƱos, with refried beans and rice and an ice cold Dos XX. YUM.

Wednesday, May 20, 2015

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 very soon after that and bringing me back home. 
  • Working on projects I want done. Helping me with hobbies that now make me tired quickly. I cannot do my yard work, but I can be out there and direct someone to do it.
Anytime:
  • clean something
  • do dishes
  • mop a floor
  • do laundry
  • any housework
  • any yard work
  • grocery shopping
  • doing all the cold chores, like cleaning the refrigerator or taking out food to warm up on the counter
  • Offering to rearrange the house. Because of the port in my chest, things had to be lowered from high places (clothes, towels, kitchen). I cannot reach up so much. I also use a walker during my crash and need room to get it around the house and by my recliner. Then offering to re-rearrange the house again as I learn what works and what does not.
Other Notes:
  • I eat normally on up swing days, but on chemo and crash days I eat 5-7 very small snack meals.
  • The food I eat during each of those periods is different from all other periods.
  • Up swing days are regular food, except for nothing cold. Cold hurts in an electric way in my mouth.
  • Chemo days is bad taste, hard to find something good, hurts more.
  • Crash days hurts my mouth the most. I might pick one thing and eat it all the time. Some smells can make me nauseous. Those smells change each time. Crash days are lots of soup or other soft stuff buried in sauces or gravies.
  • I cannot drink or eat anything cold ever. I have to handle refrigerator and freezer stuff while wearing winter gloves. Cold hurts. The "electric pain" is like hundreds of static electric shocks happening in one spot over and over.
  • Because I have never had chemo in the past, I am also learning how things are, how they change, what patterns are developing, etc.
  • I ask for help, but not everybody does. Asking and getting a no response doesn't help you or them. Try to predict what they might want or need, then say "I'm gong to come over and do such-and-such for you today, is that okay?" or "Can I take you to chemo one day and sit with you?" or "I'm bringing over some mac and cheese. Is there something you would like to have with it?"
  • From Curtis the psychologist: If you know someone who might be avoiding company, because they don't feel like entertaining; let them know you are not coming over as a friend looking for a good time. Tell them you're wearing your nurse hat, handyman hat, gardener hat or maid hat today. Then go about your business while they rest. 
Having a grab tool to pick things up off the ground or close the curtains is a huge help.

There is a great cookbook that was sent to me by one of the drug companies from my chemo infusions. It has doctor notes and lots of info on different recipes for different symptoms, like sore mouth, constipation, nausea, etc. It has a whole chapter on recipes for friends and family to fix ahead of time and bring over in individual freezer containers. The photo above is the front of the book.


Wednesday, May 13, 2015

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 Life Survivor Dinner is tomorrow. I hope to make it there. If all goes as it did last chemo round I will not be able to go. On the last Thursday after pump disconnect I was really unable to do anything. And that lasted for the whole rest of the week afterward. That was one full week of lost ability to do. Even going to the bathroom is difficult and tiring.

As for now I will spend the morning preparing for my return from disconnect. I got my walker ready, grabber stick, blankets and pillows on the recliner. I'm trying to get laundry done, but don't know if my fingers are going to let me get the clothes out of the washer. The cool water hurts to touch.

Make me feel good. Have a slush this week. Take a photo and post it in my comments below or on my Google+ or Facebook page. I was counting forward. My next hopeful chance of having one will be in September.


Monday, May 11, 2015

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 I am. The chemo in her arm hurt and gave her a burning pain.

Well Here's to You Mrs. Mr. Robinson
Then I met Mr. Robinson. He is an older me. This is his second cancer diagnosis. Stage IV colon cancer after 4 years since his first time. He started his chemo in December, and it is working! That gave me comfort. He has all but his dissertation complete on his aerospace engineering degree (which makes him a doctor in my book). He also worked at the base in Tullahoma and is now retired. I could tell right away he is an old pro at chemo. He showed me the ropes of how to manage myself better while in the chemo chair and at home with the pump. He plays in a band at the Bell Buckle Cafe, but is temporarily unable to do so. He reminds me of me in that he is a highly social person who wants to get to know everyone and hear their story. Kudos to Mr. Robinson. We're chemo-buddies.

Doctor Who
I also met Dr. McPhee. He was with his wife. She was in the chemo chair. A true belle of the ball, dressed beautifully with a grand hat. She reminded me of Senator Thelma Harper in her beautiful hats. Dr. McPhee is a nice man with a very amiable personality. Turns out he is my sister's ultimate boss. His degree is in psychology, as is mine. I would love to talk with him more. If I can get to know him I will ask if he can dance (with intent to enroll him in our Relay for Life team's Dancing With Our Stars fundraiser in November). Ha. A person in his position can bring in a lot of donations.

The staff there is wonderful. The doctor is wonderful. I am so happy to be working with so many people doing such a great job with me. God bless all of them and lift them up with love and compassion.


Friday, May 1, 2015

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 dinner got hot I ate the entire thing. It was the most I have eaten since leaving the hospital Wednesday midday. I feared that all the fried food would hurt me, but now 2 hours later, I feel even some better. That meal was so good. Finally able to eat more normal today. Most of the mouth pain is gone, but I can feel a small sore in the upper back part beginning to develop. I guess when the exhaustion starts leaving, the nausea starts arriving. But so far so good.

I grabbed my staff and put on my cape and went outside for a walk. Yesterday I made a round through the backyard. Today I wanted to go a little further if possible. I went around the entire yard and almost to my sister's house next door. I came back feeling tired, but better, breathing better, but with a slight headache. It was nice to walk by all the flowers and get close to the Ash tree.

I have lots of flats of flower seedlings that my mom and stepdad planted for me. Anybody who wants a chore can come visit and I'll have you plant them. ha. Two Aloe plants are in full bloom. They should go into the yard around mid May, as well as the Sago Palms.

My sister called a few minutes ago and asked what I want for dinner. I decided on macaroni. I feel bad that she has worked all day and then comes home to do all her chores as well as cook my dinner. Last night she hauled me up to her house for a shower/bath. I cannot get a shower chair into mine, and had to travel to clean. She's over worked and under paid (figure of speech as I do not know how much she gets paid). Sometimes I feel like such a burden. Maybe tomorrow I will be able to get around better and cook something for myself.


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

Monday, March 30, 2015

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.

Friday, March 27, 2015

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.

2nd Grade

Monday, March 23, 2015

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!

1st Grade

Tuesday, March 10, 2015

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.

me as a little boy