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Linda/ Update?

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Linda, How are you after your second chemo? Did your port settle down and were you able to use it this time? Miss hearing from you. Hugs and Holiday cheers.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

go down less than ten posts to:
Ah, Linda. How was your appointment yesterday.

She tells all there

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I don't want any one to be worrying about me, so I popped in to let you all know that I am not staying awy because I am feeling sick or sad or anything. I have just been so CRAZY buzy that I can't even SEE straight! I have a December 31st deadline for a federal grant proposal for a municipal client and so many key players will be off for the holidays that I have to get it done NOW or all my efforts thus far will be for naught. Thrown in to that is my friend Carol and her car accident, and her daily calls to see if I can get her something to eat or pick her up and take her to the doctor, insurance agency, car rental.....and I want to be there for her when she needs me. And I had a Christmas breakfast with the bank board I sit on, followed the same day with a Christmas lunch with my longest standing client, and the end of the year is when so many contracts must be re-negotiated and presentations made to Boards of Directors. Presents to get wrapped, cards out, TONS of holiday company coming, many staying 4 or 5 days. And then, the biggest time-killer of all: chemo every Monday, nutritionist appointments, port surgery and follow-up, CANCER eating up my valuable hours!. I have NOOOOOO TIME!!! About 5PM every day I could simply lay my head down and cry because I get so tired. But instead I lay down for 20 minutes and then get back to work until about 10 PM. I feel so guilty to not have baked a single Christmas cookie with my grandchildren. I won't die of cancer; I'll die of exhaustion!

But I'm okay. Back to work. I'll pop in when I can. Love you all.

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

...and I thought "I" was busy!! LOL.
Thanks for the update. Don't forget to breathe!
Thinking of you and all my new sisters and sending much positive energy your way!
Hugs,
Cecile

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

You are so busy doing for others.....remember to take time for yourself. Hope you get the energy to complete all the things you need to do before the end of the year, and maybe some of the other things don't really need to be done. You need to enjoy the holidays and not be so exhausted. Take care of yourself. In peace and caring.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Linda you are doing wayyyyyyyyyyyy toooooooooo much. You have people to help you. DELEGATE!!! Please think about what you are doing and ask yourself that a year from now "will what I am doing really matter" ?? and if what you are doing isn't going to matter a year from now .... then you know that what WILL matter a year from now is YOU not what you are doing!!!! It is difficult to do, but delegate or don't do it at all!! It may be best for others to start stepping up to the plate for you too in the long run. Let them be taught by a pro!! Stress is not good for anyone and we all have a lot of stressers in everyday activities. Step back and breathe!!! You should only be doing what you want to do. Sorry if I sound mean, but you really have a lot going. You really need to keep up your strength for the big fight... the fight that you are going to win. Cures are coming .... we need to ride that surf until that cure can reach us girl!! Happy Holidays... rest and relax. Remember the reason for the season!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I finally took a minute to call and get my CA-125 from last Monday's blood draw. It dropped from 145 to 115, still much higher than the 35 or less it needs to be, but a good drop for having just 1 weak chemo dose in me when it was taken. If my CA-125 continues to drop each week, perhaps I can stay on this 'easy chemo' (1/3 strength taxol, weekly). The only bad news in the call is that the chemo nurse said that Dr. White mentioned wanting me to start getting Neupogen if my white counts drops further at Monday's labs. I asked about getting Neulasta instead and she said you have to have at least 2 weeks between chemos to get Neulasta, since it is time-released over a period that long. So with weekly chemo, I woud need to come in and get a Neupogen shot daily for 3 to 5 days after each chemo. With a weekly chemo infusion schedule, I'd be there all the time!!! I'll have to see if I can get the Neupogen and learn to give myself the shots. Apparently, whether I'd be allowed to do that has to do with how my insurance coverage is, as some insurances only pay when the shots are administered by a clinician. I sure hope my WBC stays okay!

Peggy, I hear what you are saying, and I love you for it. I promise after January 1 to get this insanity under control. I have so many obligations I need to extract myself from. It sounds like I'm going to be FORCED to back off, if I have these daily doctor visits coming up. I'll let you all know how I make out on Monday. I thought you;d all be interested in why Neupogen is subscribed instead of Neulasta sometimes, as this was new information for me. ((((HUGS))))

deanna14
Posts: 738
Joined: Oct 2008

And try to make some time to enjoy the cookie making tradition with your grandkids :)
January 1 is not that far away. Glad to hear your CA dropped! I have heard of people giving their own Neupogen injections. I asked about it, but was told that they couldn't do it because Neupogen is soooo expensive! Hopefully you won't have to worry about it.
I had routine bloodwork done a few weeks ago and my white blood cells were slightly low and red blood cells and hgb were just barely in the normal range. When I asked the doctor about it he said that because of the radiation the "normal" for me would be slightly lower from now on. The important thing is that in the event of infection, "you can still elevate your WBC." Meaning that my body will be able to fight infection. I didn't realize that after you have radiation, some of the blood counts would probably never return to what is normal for most people. He mentioned that something to the effect that the radiation effects "about 25% of the bone marrow." Wow.... kinda creepy! A real blow to the immune system!!
I noticed that you mentioned you are seeing a nutritionist. Would you mind sharing? Curious what recommendations they have...
Stay strong!

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Deanna,
I didn't know that about the effect radiation had on the bone marrow. Might mention to your doctor that that would be a great thing to mention prior to the radiation treatments for future patients.

Ah, oh yeah, about the diet, I put a book recommendation on another thread that is fantastic not only for diet advice, from a doctor who had brain cancer and did oodles of research, but also for a whole life modification plan that can and did make the cells in the body that fight cancer increase immensely. I am just in the beginning of reading it and have thus far only skimmed other parts, but it looks really hopeful for getting your body involved in fighting the cancer with all the chemo and radiation that you are already doing or not doing. He talks about being on the long end of the median curve as far as living a long life goes. I can't give any advice on it, would just like to suggest that everyone read it for themselves and make decisions about what might they be able to incorporate into their lives and life styles to live a longer fuller life. Amti Cancer diet --It's the middle of the night, I'll go find the rest of the title and put it up later. Anyway--

I wish for us all to live a longer fuller life than we may currently feel we have. All of us.

Here is an odd suggestion coming from me, as am not quite able to feel I am smart enough to answer the question of whether there is or is not a God outside of our internal one, I do believe in the power of communitive thought, (I may have just made that term up, but I think it aptly conveys what I mean) and think that everyday we should take a few minutes to think about one another, and focus on each wishing the others to get well and live long happy, productive lives, without cancer. With a heartfelt amen at the end.

My love and gratitude to you all,

claudia

Linda,
while I realized you were doing more towards the end of the year, I also knew that due to recent developments, you were gearing up for you sons,plural? to take over your business with the coming of the new year. I believe that you are brilliant and will take excellent care of yourself, as you would not want to do anything to make the time spent with those that love you shorter than it might be. Love and kisses little red haired girl. Here's my healing thought for you.

It's here, you just can't see it.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Claudia,

I think your suggestion of ALL OF US CONNECTING WITH EACH OTHER is very powerful.

I believe so much in guided imagery. It talks about all of us sharing energy fields. I used this while I got treatment and so far my outcome has been good (still got my fingers crossed) - no neupogen needed, etc.

I agree that we should tune into each other and a set time and think positive healing thoughts. Anyone else want to do this? If, so what time is good?

Mary Ann

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Just sorta kidding. First, I didn't know that it had to be orchestrated, thinking those healing thoughts, and second, there is math cause we're in all sorts of different time zones, n'est pas??

Central here.

Claudia ; - /

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

The name of the book I refer to is Anti Cancer A new Way of life author David Servan-Schreiber, md phd

Also, if you a long time to read, The Secret History of the War on Cancer gives a good accounting of how we got where we are in the fight against cancer and more than a bit of the why's.

enjoy both, let me know what you think.

claudia

culka's picture
culka
Posts: 158
Joined: Oct 2009

I got radiation too and my hemoglobin is 135g/l (range 120-160)
RBC 4.51 (range 3.80-5.20)
WBC 4.0 (range 4.0-11.0)

White blood cells are little low, but still OK. All my life I was little anemic, now with these green infusion or chlorophyll infusion (I mean lots of green smoothies and green salads and green whatever you feed your blood. Difference between hemoglobin in our blood and chlorophyll in greens is molecule of iron in blood and molecule of magnesium in chlorophyll.) my hemoglobin is excellent. This blood test I got 1 year after radiation.

More info about this you can find on www.greenfamily.com or look for Victoria Boutenko books.

And for Linda soak yourself with vitamin C. It save and easy and every cancer patient is vitamin C deficient. I was taking 12g after surgery and during radiation and 10g after. I stopped taking it about a year ago, now I am back with 6-8g a day. It is experiment with my radiation induce hips and tailbone pain.

Jana

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I want to climb into bed before my Benedryl wears off, since I need to get some sleep before the steroids take over to keep me up all night. But I wanted you to get my GOOD news: my CA-125 dropped to 64.4! Under 35 is considered normal, so I’m getting there!
CA-125 history:
• was 11 when I finished my radiation
• was 155 when I had my 4 month checkup in November
• was 145 right before my 1st chemo, so 145 is my ‘baseline’ for my chemo treatment
• was 115 after 1st chemo
• was 90 after 2nd chemo
• was 64.4 after 3rd chemo
and I had my 4th weekly chemo today but won’t know what good that did for me until next Monday when I have blood drawn right before my chemo.

I am a little anemic but not enough to need a transfusion yet, and my platelets are holding up. My white blood count is better since I started getting the daily Neupogen shots (just 3 this week), and since this is again a holiday week, I will again have only 3 (tomorrow, Wednesday & Thursday) before next Monday’s chemo. The plan is to take that up to 5 Neupogen shots weekly once the holidays are over if my white count continues to drop with each chemo.

The oncologist said that I will stay on this taxol dose for 4 more weeks, as long as the CA125 continues to drop, and then will have a CT-scan after those 4 weeks to see what is going on with the size of those lymph nodes. Then we’ll make a plan based on what we finds out from the CT-scan. If my CA-125 rises 2 weeks in a row, we would cease taxol and do the CT-scan in 4 weeks, but Dr. White says 'that isn't going to happen!"

That’s my report! Naptime for me! ((((HUGS)))))

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

So happy to hear the CA 125 continues to drop. Glad to hear that your Neupogen shots continue to work for you also. Hope you can continue to get by without the blood transfusion, too. How is the numbing cream working for your port? I bet you are happy you have the port so you don't have to get stuck multiple times. Hope you got some rest from your Benadryl. I pray for good results in your future CAT scan. In peace and caring.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Thinking of you back in treatment and the holiday hustle. You sound like you handled it better than I did. I too can't keep the tears in check when my daughters are here. I kill myself trying to get the perfect Christmas when we should just be relaxing and being together even if it means ordering a pizza! But no, not me. I have to have special salmon stew, christmas tree cake, special snacks, Christmas day brunch and dinner. I turn myself into a worn out crab. You would think I would learn!

I enjoyed the tree more than ever though. And I loved our candles in the window. I am ready to move on. We are going to the Rose Parade for New year's! On New year's I always say, someday I am going to the Rose Parade. My daughters said this year you are going! The parade goes right by my daughters apartment. I will also get to see the lab were she works so diligently on how algae makes vitamin B and cyanobacteria. A good way to start the New year I think! And Emily and I did our research on coloring hair and I colored it lightly and it looks good. I wish I could have that beautiful gray look but somehow I just don't. I am having fun though.

Love and miss you all!
Diane

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

2 years ago we went to the Rose Parade and it was wonderful. We even signed up to help with a float. We got to go on a Behind the Scene's Tour to see many of the floats up close. I loved every minute of it. It was amazing to see how the floats progressed in a couple of days. I am glad you are going to experience the Parade.

Glad you are happy with your hair coloring. I think that you need to do things that make you feel good. Are you going to post a picture with your new hair color? I would love to see it. In peace and caring.

deanna14
Posts: 738
Joined: Oct 2008

Linda, I am so happy to hear that your CA in consistently dropping! I hope the Neupogen injections are not causing you any bone pain! Eat lots of leafy greens, hopefully you can avoid the blood transfusion. Praying that the next for weeks will pass quickly and uneventfully and that those lymph nodes will be back to normal on the follow up CT. I think of you often and my heart aches that you are having to go through this. Stay strong my sister!

Diane, sounds like you are having a great time with your daughters! Enjoy one glorious day at a time!! Glad to hear that you like your new hair color. I dyed mine when I saw all the grey coming in, but I think the grey was growing in faster than the brown. Now that it is getting thicker, the grey is not as noticeable. My hairdresser wants to do highlights in the spring. I am still feeling rather cautious about getting invested in my hair...
Enjoy the parade!!

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Great news about how you are progressing...

Keep up the great work!

I am in Week 4 of 6 of external radiation....plus doing the Chemo concurrently...
This pelvic radiation is killing me from the Bowel perspective and now I have developed a Hemmoroid...which is not pleasant at all...grrrr...

My next Chemo is on Monday the 4th...I am scared this time will not be like the last time, which was pretty uneventful...one can only hope it will be.

Stay well!

Laurie

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