Thursday, May 24, 2012

Sharing The Journey


If you want to post it that's fine with me, hope it's not too much extra work.  
Hope each day is a little better, you are doing great!!

Sent from my iPhone

On May 23, 2012, at 9:33 PM, Susan Ward <susanpi@aol.com> wrote:

> Hi Mary- Thank you so much for your words of wisdom. for sharing your story. 
If you don't  mind I would like to post your message on the blog.  I have had a 
really rough 3 days. I have not been able to sleep and my whole body aches. It 
is nice to hear your caring words. A lot of people are reading the blog  and  as 
cancer survivors  I think it is wonderful to share our journeys .
> 
> Let me know xo
> 

From: Mary Brink <brinkmary@gmail.com>
Date: May 22, 2012 5:25:44 PM EDT
To: Susan Ward <susanpi@aol.com>
Subject: Treatments
Hi Susan,

I saw your post about the 4 versus 6 treatments, and had a thought.  I went to Dr. Cody who is in the same practice as Dr. Bhandri, just in the Norwood office.  Would it make you feel better about this choice that is coming up if you also had a second opinion?  Dr. Cody is great, very knowledgeable about breast cancer, and also always on the cutting edge of new information.  He had considered extending one of my medicines for a second year but the findings were not conclusive.

I can tell you that for me, the last 2 treatments left me more tired for a day or two longer than the first 4 treatments, so I think they do take more of a toll.  Towards the end my fingernails were affected, but I think that had started around the 3rd treatment.  I didn't lose any of them, but they were sensitive and darkened.  (Tea Tree Oil was stinky but helped, and so did soaking them in a solution of hydrogen peroxide and water.)  The tiredness was the only change I noticed, but there was a change, so maybe that's why there is research being done to determine if a full 6 treatments give a good return on the investment?

Of course, I know that you will make the right decision, I just had these couple of thoughts that I wanted to pass along, certainly don't want to cause any problems.

I think of you often, I admire your spirit so much!!!!

Mary
___________________________________________________________________________


Sue, Hi!! You sound great. I never could do the recommended because my body can not take the taxol. I get horrible reactions. I had my pet scan and mammogram and ultrasound and they  can't find any cancer. That was a good day. I can never take any chemo because of my heart condition. so every day is a blessing. He wakes me up every morning. Just enjoy and trust the Doctor's (that is all you can do anyway). They still know more than you do. Enjoy today.


Love, Linda

Tuesday, May 22, 2012




Monday May 21, 2012
2:45 PM
 Chemo
Appointment 11:40 AM
I just got my IVs started I expect get out of here about seven o'clock tonight I slept four hours last night and I'm still taking steroids and I'm a little wound up. They are giving me more steroids in the IV. Great!
I fnally  talked to DR Bhandri- 3:30 PM. He is probably
 going to stop the Chemo after the next treatment. The medical community has a conference  at Ohio State Medical Center next week they are redoing the guide lines on how much chemo is necessary.  This is a research 
 hospital (the  same hospital which is treating Robin) The concept or question, my question is are four treat  all  that are needed? He  thinks this might be so. I had a red flag go up - is it enough? I know that six the  treatments - maybe to dangerous for my body. But so is the return of cancer.
 
Dr Bhandri - is an incrediable Dr. he knows everything, he is so intellengent
you can understand what he knows and what he is saying. He is on top of the constant changes that are happening daily in cancer, treatments that allow people to live a  long healthy life. He is attending a conference on the newest proceedures on chemo for breast cancer. But this is my body and my goal is no more cancer!
 
 He is going to review my case at this conference also the family cancer history with the genetics family at Ohio State next week to determine what is the best route to take.
 
8:30 PM
I am finished with my chemo for today - it has been a very long day.

Tuesday May 22, 2012
3:00 AM
I can not sleep! 


8:25 AM
I have taken my steroid for the morning and drinking  coffee feeling OK!
.








Sunday, May 20, 2012

I should be rolling on the river tonight

OMG I have not stopped all day. I have cleaned the kitchen, laundry, changed the sheets on the bed, watered all my flowers , put water in the fish pond and pulled some weeds. Spent hours on You Tube learning how to be a better yarn spinner. Packed all the left over groceries that Alex did not eat so he could take them home with him.  I thought this would be easier as they cut back the dosage of the steroids!!!:)

Feeling Good - KY Sheep and Fiber Festival, Cemo Tomorrow

Friday - May18, 2011
9.58 AM
Today is a great day:) I feel really, really good. Last night we went to an outdoor concert at Newport on the levee. The weather was perfect the sky was clear,  the lights of the city were beautiful, music was fabulous! Newport, Ky sits across the Ohio River from Cincinnati, OH. The view  is amazing.

 The band was Soul Pocket . They did a tribute to Donna Summers who passed away today from lung cancer.
This is the first time I have gotten together with my BF's in  along time. Had a wonderful time:)

My Grandson Alex is spending the weekend with me, we are going to the KY Sheep and Fiber Festival in Lexington, KY. So I went to the store and got all his fave foods and drinks. (not to much food as I still have the  eating issue and do not want food sitting in the refrigerator)

****************************************************************
Sunday May 20, 2012
12:09 PM
 We had such a good time yesterday, got some roving to spin and some yarn for a sweater. Alex got a small loom to make pot holders. Guess what ? I know most of us learned how to make pot holders as children, remember?  Nothing has changed , same loom , same hooks. He also got a T Shirt! He was a happy camper. I was extremely tired - but I did it and it was fun. There were lots of sheep, goats, angora rabbits and dogs. ( Alex wanted to take Suger thank goodness they do not allow dogs on the bus, because Suger would not have behaved. She loves people and would have thought they were all there to see her)  Alex made a video of the sheering of a sheep. He loves hanging out with all my knitting family. Of course we are a lot of fun and other preteens and young teens were with us!


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Sunday May 20. 2012
12:45 PM
I started the steroids early this morning and I have chemo  tomorrow starting 12:30 PM

Saturday, May 12, 2012

My last 13 days Hat of the Day Wig Story

A gift from Syd and Tasha:) very creative.

Happy Saturday Everybody,
My last chemo which was on April 30th - it really really slowed me down and zapped all my energy and ability to eat. I pushed my self and Poopy dog aka Sugar we slowly walked to the stop sign and back most days. The good thing is I am feeling much better after 13 days. Eating is still an issue - I don't want any food in the refrigerator, except Ensure. For a few days I hated the smell of the Ensure. Now, I eat the egg McMuffin early in  the morning, because I have to. My sense of taste is coming back:) The food of choice is spicy pizza I know how it taste and if it is spicy I sort of taste it. I am allowed an occasional beer. SO I tried a beer (Bud Lite Lime) on Thursday at the pizza parlor. I took a sip and cheered OMG I can taste the beer. ya!

I am ready to go to the  Kentucky Wool Festival  a week from today:) Than I have a chemo treatment on the 21st.

++++
I have been asked about my wig- which I have not worn. I am sure I will wear it, right now my head itches and I have just been wearing the hats my GF's have knitted  for me. It is a comfort thing.
 I do have a wig story and it might reflect part of the reason I hesitate to put the wig on. The main reason is, I do not care for fake hair-  I am more what you see is what you get type person.

Many years ago, some time in the past, early eighties - my Mother Betty was really into wigs. The late 70's/80's it was like a revolution. Women had a choice, go to the beauty shop once a week have your hair washed, styled and sprayed stiff and in place with hair spray, enough hair spray so the do lasted for a week or they could buy a wig and look glamorus with the hair sprayed wig. 

Mother was visiting the kids and I and my x husband came for a visit.  It was a reunion of sorts. We were all standing in the foyer Betty and Rod shared a hug. Then he sort of tugged at her wig and asked "what is this?" I don' think Betty responded but I do know she never wore the wig again! Very funny. I am sure she was mortified. LOL
 
Personal Email to share: Scroll down.
Sue, Hi!! I had 6 the first time. Was suppose to do 8. The second time I had 5. My body is allergic to the Taxol and taxafere is still a cousin to it so I only took 1 session of it. The AC is what they think gave me the congestive heart failure. I finished doing chemo in April of last year and the chemo kept working. The longer it worked the worse my heart got. Unfortunately no one caught it. Make sure you have an echo when you finish the chemo and see how your heart is. I work out 3 days a week and I am alot stronger than I was. The dr. is amazed by my progress. Brian told him I sleep flat on my back and he said that was not possible. I should not be able to breath. When I wake up in the morning I am on my back and I have no problems breathing. The only problem I have is humidity. The higher the humidity harder to breath. Not a great place to be in the summer. I am planning to go somewhere this summer or right after summer. I will either go to San Francisco to stay with my Aunt or go away with Brian. It is up to him. The only hassle with going away is the Dr. will not allow me to go without oxygen. I don't ever use it but that is the stipulation on going away. Keep up the good work. You will beat this and be fine. You will get exhausted just remember to listen to your body. If it needs rest just do it. Take care
Love, Linda
-------- Original Message --------
Subject: RE: Blog updated and we have a nest of raccoons
From: Susan Ward <susanpi@aol.com>
Date: Mon, May 07, 2012 9:14 pm
To:


Hi Linda... It really is a learning adventure haha.They say we have to keep learning new things to keep the brain  young. I already have the think going on with my mouth It does not seem to be going away. I lost four pounds in a week. Oh well. I have only had 2 sessions. I am suppose to have a total of 6 three weeks apart. I hope my body can handle it. Other than the cancer part I am am strong and healthy. Today I am not so confident, I understand now why he is using 4 sessions as a regrouping time. Than I have to go the  specialist at the University of Michigan.
 At what point did you start having a problem with the chemo I know they stopped yours for a while . What happened before you had the congested heart failure?
You know I had BC in 2007 I had partial mastectomy and radiation then. then I had growth in my uterus  December 2011 and had a hestramectmoy.
I am thrilled that you are cancer free, I am sure you will have and so will I have lots of body scans as we move forward.
Love, Sue

Monday, May 7, 2012

The Raccoon Family and Chemo Head


The weather is very nice my wisteria is blooming and everything is so green in 
Northern Kentucky what great place to live, I know brother Tommy it is great place to live 
great community!  
I definitely feel I have chemo head. I thought those two words were hysterical when my 
brother Bob sent me a living with cancer newsletter. I have this dictation program on my 
IPhone and I have used it many times, it always has to be edited as it speaks several 
languages. Today I have been trying to figure out how to record my thoughts on my Dragon dictation! Not going well. 

I do not want to eat! The food thing is big deal now the Ensure is starting to smell to 
me. I know this will get better:)   The good thing is I have not lost any weight! Which is a good thing! So I have  been kind of existing on Ensure and bites of food here and there. Peter got  me an egg McMuffin this morning! 
 Yesterday I went out for a lunch with some friends. ( we ate outside)  I was trying to pay the bill and I was leaving a $2.50 tip I got the $2.50 down down but couldn't add the $ 2.50
 to the Bill. I just literally could not do the simplest math, someone had to help me. Oh my, the confusion is part of chemo head    and also I apparently have chemo fever because I am continually running a low-grade fever. All kinds of fun. However I will be at the Kentucky
 wool and Fiber Festival in Lexington May 18th! 
http://kentuckysheepandfiber.com/

My dictation is now working! I guess I should say I figured it out! 
Last week we noticed that there was a small hole in the wood gutter of our garage
A few weeks before Peter discovered a nest of raccoons in an old furnace pipe in the basement
behind the furnace. He evicted the family and recapped the pipe  and they were gone! Last 
night right before dusk I was letting the cat in and I noticed an animal on the garage roof, exactly where the gutter was damaged. Guess what? it was the mother 
raccoon OMG
The big discovery was that the raccoon was climbing out of the hole ! I did not have my glasses on - which I retrieved, by this time this creature had made a trip to the other side of 
the roof, grabbed some limbs from a tree and was squeezing her ass into the hole in the 
gutter.
OMG it was very boldly enlarging the hole (it was not even dark out) apparently it has 
moved the  family into the garage. Raccoons  are so destructive!  I wish she had just moved a
few more yards  away from my house. So Peter's days off this week can be spent trying to get the dear little family out of the garage! 
Than you for reading my sometimes rambling blog:)
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Hat of the Day
This is a very cute hat :) A gift from a GF.