Tuesday, August 18, 2009

Busy Week

Chemo #15









Not sure what I was doing here when Patrick took the picture!!! Think I was talking to the new patient.

It has been a busy week medical wise!!! And heat wise - the heat wave has hit again. But no one had better complain!! We had a wee bit of rain last week and some cooler and much appreciated temperatures. Though the PNE starts on Saturday and that could mean a change in the weather!!! I am going Monday or Tuesday with Meghan and Ryan - thinking more Tuesday -as VanCity members and one guest get in for $5 - so that saves $20! I like that!

Monday, Brian and I both had an appointment to see our family doctor. By the time we got out of there, we had 6 Rx between us plus I had one waiting at the pharmacy I had called in earlier - so 7 in total! Thank goodness we have insurance and BC Pharmacare or these would have cost us close to $600!!! In the end $34.

Tuesday, it was time to see Dr. Pansegrau. Nothing out of the ordinary with this visit. The liver is looking ok - harder to see of course with an ultrasound, but keeping in line with my tumour markers. He has said that I will be having the pre-meds before each chemo session so as not to have the allergic reaction with the eye again - so that will add about half an hour to the session -but that is better than having a reaction. I did forget to tell him about the ringing in the left ear which is now constant and a bit of ringing in the right ear which comes and goes. Will have to write it down for when I see him in three weeks. I will be having a CT scan before cycle 4 to see how this set of drugs is working and more than likely an ultra sound of the liver as well.













Relaxing after the premeds - they made me sleepy and cold this time.

Patrick came today for my chemo appointment as he may be gone shortly to join the Armed Forces. At least with me having the port in, he will be ok - he hates needles!!! I didn't make him come into the room where they put it in! And Meghan stopped by to say hello.




Patrick and I.......


I had Julie today - and she was quite nice and not quite as chatty as the other gals but a very good nurse. I mentioned it to her that I had forgotten to tell Dr. P about the ringing in the ears. She asked how bad it was, and Leslie picked up on it as well. Told her it is 24/7 in my left and about half that in the right. She called Dr. Johal (Dr. P is on holidays) and he changed one of the chemo drugs - took me off the Cisplatin and put me on a sort of sister drug to it - Carboplatin which has very few side effects - wahooo. So that took a while to sort out, the file had to go down to him and he had to physically change it and then the file went to pharmacy and eventually it came back to the chemo room. Once that was all settled, then Julie started me on the pre-meds for allergies and that takes about 25 minutes - then had to wait about 20 minutes after it finished to get it through my system. Then started my two chemo drugs. At one point, when Julie was at lunch, I asked Leslie what my numbers were. The red count was good 131 but my white count - I just about didn't get the chemo done - I was 1.0 - so now I have t be very careful with my health and checking my temp more often. Don't want to end up in the hospital. My chemo drugs are already at 75% because of the allergic reactions. And ya know, twice in hospital in a year is enough!!

Julie and I
People keep asking me how I am so upbeat all of the time. For the most part, I am, but there are times when I am down - I usually try and not show it. My friend "Pink Lady" asked me about it the other day and what about the depression. It is there, it is hard not to have it. There are the meds I take and they do help. When I am not as spunky as I normally am, I will be reading - more than usual - and will just find a place and read. And if it is a good book, then it is finished quickly! Or I just go very quiet. I find night time is the worst - when I go to bed, more so after I have had tests done - it is the what if factor that kicks in. And there is nothing you can do about that - it is there and in your head.

My hair started to come back and now it has stopped growing again - and it comes out hair by hair - it won't all go, just thin out. And I don't like it - I want my hair back and my eyebrows (they are sort of there, but blonde) and the eye lashes (same they are there but thin and light - and damn it I need a 7x mirror to put on mascara!!!). I know, greedy aren't I!! I really want to know what the final colour and texture will be in the end!!! Any wagers?? And damn it, have to shave again!!!

I have been on chemo for a year now - give or take a few weeks. I thought I would be back at work in August. Now it is looking like at least next year. 2010 - seems like such a long time. I miss working and I miss the people contact. And I would not be honest in that I miss the money!!! And my train friends! Morning and afternoon ones!

Well that is it until next Thursday when I have my next chemo appointment. It should go a lot faster - the regular time which should be about 90 minutes!!

Caio and feel free to leave a comment - I love to get them and read them.... and I have changed it so that you don't have to put in the "verification words" - so that should make it a bit easier.


Roni

14 comments:

Cristiana said...

Thanks for the update Roni, when are you going to come by and visit like you said? Or do I have to come by there again?!? I haven't started driving yet but I am determined to do that within the next 2 weeks.
Hope to see you soon and give me a call when you feel like it sister.

Love you lots,
Cristiana

Cristiana said...
This comment has been removed by the author.
Anonymous said...

Hi Roni
Wow - what a lot of meds for you to be on!!! So glad you have some health insurance that can help with that so that at least that's not another stressor. You have enough already. It's also ok to tell us when you're down - i know I could not have handled this with the grace and fortitude that you have. I have so much admiration for you, I can't even begin to describe that. Of course it's been hard on Brian - and on your kids. No one can imagine how hard unless they've been through it themselves. I'm thankful that you have a close and loving family to support you. Take care of yourself and rest as much as you can - all the rest will fall into place in it's own time. HUGE HUGS to you and yours
XXX Mavis XXX

Niki G said...

hey ronikins

i've been out of the loop for a bit but i'm back. thanks for the update. i'm wondering, are you allowed to henna your hair?

Roni said...

Answers and Such:

Cris - I am coming over, left message on FB - Friday (ie Aug 21)

Niki - will have to find out on the henna...... and personally that stuff stinks!!!

To leave a message - type it, then type in your name where it says name and then click publish.

Thanks!!
Roni

Anonymous said...

Thanks for keeping us updated Roni,I wish all goes well for you and hope to catch you soon on Facebook again!
Love to all the family and good luck to Brian for his new job!
Loads of love and hugs,
Sandy,Portsmouth England.

Anonymous said...

Counting coup
From Wikipedia, the free encyclopedia
Counting Coup refers to the winning of prestige in battle by the Plains Indians of North America. Warriors won prestige by acts of bravery in the face of the enemy, and these acts could be recorded in various ways and retold as stories.
Any blow struck against the enemy counted as a coup, but the most prestigious acts included touching an enemy warrior, with the hand or with a coup stick, then escaping unharmed. Counting coup could also involve stealing from the enemy. Risk of injury or death was required to count coup.

I cannot begin to share with you all the number of times I have witnessed these acts of extreme heroism over the last year. When many would have simply laid down and surrendered there stands Roni screaming ‘Bring it on cancer, I can take all ya got!!’ Her determination to beat this disease and to shelter her loved ones from its effects, simply put, goes far above and beyond. Roni, unknowingly, by her actions, her courage and determination keeps Team Roni motivated to carry on.
When we go to see Dr. P and he has no bad news…that is great news…count coup! As of the last set of test results the tumors are being held in check; they are not growing. This is good.
Make no mistake; it was made abundantly clear to both Roni and I, and thereby the Team, that at this time, they cannot cure what Roni has, but they can slow it down.
Through the money raised by the Country Dancing Boobies and other groups the cure may happen tomorrow or next week, it may be in time for our cherished Roni or ….
A year ago, when this chemo all started, Roni volunteered to be a guinea pig. Her reasoning was. “That if they cannot cure me maybe I can contribute so other women do not have to suffer this.” Unfortunately other medical complications prevented Roni from testing new drugs or procedures.
Last night Roni and I had dinner with a very interesting man and his family. Mark is friend from Roni’s long past; back in their 20’s. Mark and his family now live in Egypt, which is a far fetch from Fort St. John, where he and Roni met. I observed the interaction between friends who had not seen each other in nearly 30 years…home coming week. It was very easy to see the deep, deep respect Roni and Mark have for each other, I was humbled.
During the course of our evening Mark mentioned that his Dad had recently passed and said something that really stuck with me. Being the ‘strong one’ in his family he had to tell his siblings that is was alright. It was alright to feel sad, it was alright to feel confused, hurt, helpless, resentful, or whatever one was feeling… it is alright…each of us is entitled to our emotions! More important each of us is entitled to share those feelings and to have others respect those feelings.
It is alright to invite Roni for coffee and share. You can tell how sad you are that she is going through this. You can share how proud you are to have a friend like her. Whatever you feel; Roni will not be hurt or offended by what you reveal. Hell, you can even tell her how lousy she is at picking men. What is important is that you stay in touch with her, do not abandon her. You don’t have to even mention her, talk about anything but let her know your thinking of her. It is alright!

Brian

Beating cancer is a team sport…get on a team!

Anonymous said...

I almost have no words, you are beautiful and strong and Brian is wonderful, you both inspire me.

Anonymous said...

p.s. forgot to put my name on above, sorry. sandra erickson

Pam Hughes said...

Awwwwww.......... Roni, that is so beautiful. I'm so glad you mentioned that we should read what Brian wrote. We're learning so much from your journey. I'm so glad you're on my Facebook Team!

Love and hugs
Pam Hughes

Anonymous said...

Brian I thank you again for you sharing and support as much I thank the rest of the gang and Roni for this blog.

From someone who has walked a part of this journey (no recurrence thus far and hopefully I can keep that track record) I concur with Brian's comments totally.

Roni - the nights for me were the worst. The "what if's" can drag you down. It's okay to have them and wallow in some crud from time to time (god knows you're entitled) just try not to let them keep you shackled for too long.

Feelings are neither right nor wrong, they just are. I wish for you more bright, happy ones then dark and gloomy (Vancouver weather usually has enough of that without adding to the mix. LOL

Love you my Angel friend. I wish you good days, Pink Lady a.k.a. Bonnie in PG

BCSugar said...

Hi Roni,

I'm a wee bit later (retarded?) at commenting about your post this time around... (lol), but I'm sure you already knew that I'd be here with my 2-cents worth, sooner or later!

I'm so glad to know that your tumors are static this time around, and hope that they remain that way for the future tests, as well. It means that something they're doing is working for you, and that makes us all happier.

Great comment, Brian! You have a way with words that many of us envy, and they're hard to follow...

As part of your 'family', I'm so proud to be a part of your team, and to share in your life, whether the times are good or bad. It seems that all the times we spend together are good, and I cherish them...

Take care, my dear friend, and I'll see you soon. Keep your chin up - you have an army who've got your back!

Anonymous said...

Hi Roni, Just back from our trip and wanted to check the blog before I did anything else. Glad to hear there is no growth of the tumors but wishing there was more growth of the hair... You have a great plan if you only pay $34 for all of your meds... although I wish you didn't need any of the meds.... I will catch up with you soon I hope and we have a dinner we need to make up as I recall.... chat soon my dear friend, love Rae

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