The Week Since I Got Poisoned

There are lots of details here so feel free to skim over it or go to the end and see my hopes.

Wednesday, August 25

Wednesday night, after my infusion, I felt fine....but I could not get to sleep due to the Benedryl that had been pumped in prior to the chemo. I was wired. At 3 AM, I took an Ambien and went right to sleep. Woke up @7 and most of the day was fine. My face was really red and my port site ached, so I e-mailed my nurse and she told me this was normal....flushing was from the Taxol, and the port had been secured with 100 stitches, so it would ache for a few days.

Thursday, August 26

Laura and I just hung out most of the day, she took Charlie on errands...I was fine. We went for a short walk at 4, then came back to her house and I made homemade chicken fingers for Charlie, then sat down to read --- and five minutes later I fell apart. I felt like I had been run over by a bus. This came over me so suddenly! 

I spent the next 2 hours in agony, could not even think or talk. BUT I was not nauseated since I started on the Zofran at 3:30. I went upstairs @7:30 and laid in bed, watching a stupid movie. By then it was 9:30 and I decided to stay awake and take the medicine a half hour early. Laura came in with me and we just talked until 11 when I took the nausea med, an Ambien, and Colace. I cannot believe what I am putting into my body. I am someone who took only vitamins and one pill a day for thyroid!

I fell asleep right away then awoke at 5:30 with the worst headache I have ever had, like my head was in a vise. I called the on-call doctor at Hopkins and she called me back in 5 minutes. I had been told to not take any Tylenol or Advil without checking with them first, and she told me to go ahead and take two Tylenol. Within a half hour it was gone, thank goodness.

Friday, August 27

I had to wake up at 7 for the nausea medication (you are told not to miss even one dose and take it every 8 hours without fail), got up, had a cup of coffee and toast while Charlie had breakfast, then went back to bed at 8 and slept until 10. I felt like a new person. I planned to take it easy, start a new book, take a shower, and maybe take a short walk.

I took a 2-hour nap Friday afternoon and got up for dinner, which Laura’s dear friend Carron had made for us. I was able to eat delicious chicken-rice soup/stew, a roll and some watermelon. After dinner, Laura helped me get bandages off the port site and I took a shower….it felt so good. I went to bed at 10 as soon as I took the nausea medication and slept for a short while ----- until THE PAIN arrived. Pain everywhere, especially the tops of my feet and hands, legs and arms. I have never felt anything like it. I took Tylenol but that did not give me much relief. I did not sleep very well.

Saturday, August 28

Today was a fairly good day, relatively speaking. I started a new book, went for a walk in the afternoon, and then we all sat in the yard watching Charlie play in the sprinkler. He made me laugh. Isn't he the cutest???

 

We had BLTs for dinner and then Laura and I watched 50 First Dates until 9:30. I was really tired but not sick or achy. Got a few hours of sleep.

Sunday, August 29

Laura and I met Bob halfway between our houses at 10:15 and I came back to PA. I think the trip was hard on me because I felt bad all day. To get a bit graphic, constipation does not help.

I had terrible gas pains all night long…got almost no sleep. The next day, I e-mailed my nurse and she said the only way to get rid of gas is to walk. I will remember that the next time. Meanwhile, I am going to have to be wary of what I eat. There are a lot of things that cause gas and many of them are things I am supposed to eat!

Monday August 30

Started the day feeling okay, thank goodness. Went for my weekly blood work and then Bob and I walked for a few minutes at a park near the library. It was over 90 degrees and that is all I could tolerate.

I came home and had some of Carron's yummy sweet potato soup for lunch.

The rest of the day was spent reading and making lists….I am famous for doing this!

Debbie is in Minnesota with Lynn and I miss her so much. I dread when she leaves for 12 days to go out west on the 10th.

We had chicken salad and macaroni and cheese from Doc’s (the local butcher shop which has a woman who makes prepared food) for dinner. Bob got me Dole fruit in jars and it was delicious. Stayed downstairs until 9 PM!

Tuesday August 31

I got about 8 hours of sleep and woke up feeling great. Took my last Zofran at 6 AM and hoped that I do not get nauseated, but I do have an alternative to take as needed.

I did a load of laundry, had a waffle, and unpacked some stuff that I brought home from Laura’s.

Bob went out for lunch and then got us veggie lasagna for dinner from a little local restaurant. We are so lucky to have so many places nearby where we can buy prepared food, reasonably. I do want to try doing some cooking this weekend if my energy holds out. Many people have offered to bring us meals, but I am not yet sure what I will be able to tolerate. At this point, I really have to force myself to eat. I try to have several small meals each day and that is a real effort.

I took SEVEN short walks today. Hope that wards off the gas.

I do not know where the time goes, but I am moving very slowly and am really tired all the time. It is 11 PM now and I have had no nausea. Hooray! I just talked to both kids and that always makes me feel better.

I have a busy day tomorrow. Yes, I made a list! I find I do better when I set goals.

And WATER - I must drink 64-80 ounces of liquid a day, and I drink mostly water with lemon juice. Any decaffinated beverage counts, as does jello, milk (needed for protein), popsicles, etc. I try to have one malted milk drink a day.

          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am hoping that there will be a pattern to this treatment --- 5 days of hell, then 16 days of almost-normal, except for being tired. I am lucky that I can just drug myself and go to bed for those 5 days. Well, except for my walks!

The worst part is waiting to feel awful, so I hope I can get over that anxiety. I have been told that my body will adjust to this poisoning, and I am hopeful that is the case.

I am feeling very positive, that I can beat this devil, as my friend Cissie calls it.

Thanks for visiting. My hope is that being honest about my experiences can help someone else who needs information, whether it is a person having chemo or who wants to help someone going through this .

I also know that I will never be the same.

Yes, I cry. A little less each day, but some. And this is okay.

Comments

[Linda]

I think I would be the same way-the waiting for what's coming. You sound like you are doing great and have a wonderful support system. I hope you will keep posting-but only if you feel up to it.

[diane]

It's unbelievable how many different kinds of chemo regimen out there. I never knew anyone who had that built in port -- 100 stitches?? OUCH

Good for you for taking advantage of the feeling good times JoAnn, I am depressed just thinking about what you are going through. HUGS

[Barb]

Followed a link from Laura's blog. . .
I am so sorry this is happening to you, but I want to thank you for taking the time to share your experience through writing. I know many people who have battled cancer, and hearing about your experience helps me understand how to be supportive of something that will always be a part of them even after it has left their body.

[Melissa (Betty and Boo's Mommy)]

You were on my mind this morning, so I am so glad to see this update.

You CAN beat this poisonous devil.

Love the photos of Charlie, as always.

[Pat Farren]

My dear friend,
Thank you for keeping us all up to date, at least for me it helps immensely. Never stop fighting, you are so strong & have such a determined will to beat this devil which you will.
Jo, LOV the pictures esp. of your angel (Charlie), but I can not get over how much your daughter looks like you did in high school, beautiful.
Hugs

[Morty]

JoAnn

Sounds like each day got a little better. I hope that trend continues. If you need my recipe for lemon/lime green jello knoxblocks, just let me know. They're the reason I look forward to my colonoscopies.

Morty

[Jean Austin]

Good hearing from you. I've been thinking of what it was like for patients going through what you are suffering through when I worked at Associated Internists of Danbury (AID- terrible acronym but it was in the 70's-80's) many years ago when I lived in Ridgefield CT and delivering chemo to cancer patients with syringes in their arms. I know you won't believe this but it is so much better now with the anti-nausea drugs, the portal-shunts, the more effective chemo drugs, and the care and understanding we have now for the patient than then. Keep up the fight. jean

[Di]

I want some of that Sweet Potato Soup. I would say that I wanted the recipe, but let's face it...I'm not going to make it. So I just want Carron to make me some!

It is miraculous how far cancer treatment has come in the last 20 years, especially in terms of controlling the potentially debilitating side effects. 20 years ago when my dear mother-in-law had cancer it was the constant nausea and vomiting for weeks after each chemo that really wore her down. I think she would have stayed to fight longer if they had the kinds of things they have now.

You look terrific in the picture. I hope your beautiful hair decides to stay on your head! If not, there are some really fun hats to knit. Kim couldn't stand wigs because they were just too hot, but she had an impressive collection of hats...but usually wore her Boston Red Sox hat.

[Leslie McLeod]

Love getting updates from you, Jo. Sounds like you are fighting this battle with a lot of strength and grace. Isn't "I WIll Survive" a Donna Summer song? I may have it wrong but if not, I think it would be fun to sing it every day! Also how wonderful that you have your precious Charlie to keep your spirits up and to dote on him.
The sweet potato soup sounds delish., but I still think you need to let people bring you food :) Someone (Bob?) will eat it.
Keep your spirits high!

[Margaret]

So glad to get the update and all the information. Glad you are having more days of feeling good, even though tired. Love the pictures and from one who knows, the boy can make everything better :) Also, my kitties always play "nurse" when I'm sick - how is Isaac handling all of this? Keep fighting and posting - that poison is going to work!

Margaret

[susan ostaseski]

Keep your smile and you DO look beautiful in the picture. Charlie would light up any world. I am glad you are having some good days and yes, you will get into a rhythm with this. Eat what you want, but so far the soup, lasagna, and other goodies sound yummy. If someone brings a dish, freeze it for when you feel like eating. Keep walking! Healing thoughts are with you. love, Susan O.

[Nancy]

I love your detailed diary. I would think this would be so helpful to someone else going through it. It's especially helpful to all of your friends as well. You're simply amazing.

[gail mealey]

Joann,I love your blog.....It's so good to keep everyone informed. Because talking about it is just draining...Although, it would nice justto hear your voice....It sounds like you are doing great defeating the "devil". Keep up the good work.....Hell of a way to try all the restaurants in the area. Enjoy it.
Love the photo....You look great AND very happy. So glad you have Charlie. Can you believe that my oldest child is 42 today. OUCH... Keep up the good work.....you're the best.....I'll be sending you something soon....Will send to PA.

love, gail

[JoAnn Kirk]

I cannot believe Shannon is 42!!!!! EGADS. But since you had her when yooou were 14, that makes you very young.

A lot of the things I am going through must be familiar to you.

Every time I talk on the phone I cry, except to Laura and Debbie. Today I was buying a gift certificate for Laura on the phone and the girl asked what I wanted to write on it and I said To my Laura, for all that you do and are. I started crying after the second word. Poor gal did not know what to say.

L,J

[Joe Forester]

Great hearing from you. Sounds like you are getting into a pattern wih this. Keep strong and keep your positive outlook. You will beat this. You have so many people keeping you in their daily thoughts and prayers.

[Grace Kirk]

Thanks for the update and daily reporting on how your spirits are
keeping you positive. Oh,but the"grands"make everything special.
You are in my daily payers. Grace

[Arda Swift]

EGADS!?!?!?! Back in the stone age (the 50's) this was my favorite expression. Until my parents ganged up on me and threatened me with extinction, banishment, bamboo sticks under my fingernails, etc., if I didn't stop.

I can only add my "dittos" to all the posts above. You are truly amazing. As for Charmer? All four of my babies respond to my moods; I don't know what I would do without them. By all means keep Charlie, Laura, Debbie, and BOB close to hand.

love ya,

ardamay

[melanie]

Thank you for the honest and detailed updates - it is a real help to those who care about you and think about you and pray for you. You are amazing!

[alan shapiro]

wonderful that you seem to be dealing with your issues so gallantly! cheering for you every day. i know what your going through! keep it up.love, beez

[Carron]

I'll make you more soup whenever you want!
Love that photo of you three.

xoxo

[Rosely Robinson]

Thank you for keeping me posted. I look forward to your blogs. You are an amazing lady. Love Charlie's photo.
Your friend, Rosely

[Linda]

Thank you, for giving such a detailed update. You have been in our prayers...and it is GREAT to see what a wonderful support system you have...and to watch the courage with which you fight to defeat the big C.

The photos of Charlie...are simply precious!

[Tami]

I am not very religious but when I run I feel like that is my time to think and I thought of you the other day. Sometimes when I am running and it gets "hard" I think of you and others who are struggling through something that IS really hard and I push on, and I know you will too. I am running a marathon in a few weeks and you will be on my mind.

[Paul Bleiberg]

I saw your brother and sister-in-law at Mytle Beach. We had a nice conversation mostly about you. May you contimue to get better.