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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.
  • 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.