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Time for an update


TracyD

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I know I have not been around much lately, but life has been a bit crazy the past few months. I know that my last post left some of you wondering how I am, I can say that me, and my family, are now okay. We went through a really rough time that I don't really want to share right now, but the good news is that things are better and we are a stronger family for it.

As for my treatment, I had been on a clinical trial of the drug IPI-504. I had a good response to it after the first two cycles, but I had some progression after the fourth cycle so I was booted out of the trial. It was probaly for the best as I had developed some spine mets which have been causing me incredible back pain, to the point where I was not able to walk for more than a few minutes. Radiation was not an option as long as I remained in the trial. I am currently using a wheelchair to get around if I need to go shopping, or any other place where walking is involved.

My mother and I took my 14 year old daughter out shopping for a graduation dress this past weekend. It was very difficult for me to use the wheelchair as I feel that my quality of life is being taken away from me. However, I realized that in using it some of my QOL has been given back to me. I could either use the chair and enjoy a wonderful day with my daughter, or not use the chair and miss out on a wonderful day. I decided that the former was the way to go.

Today I had my 3rd round of radiation, so far so good, other than some fatigue. I didn't experience this last time I had radiation, so I was taken by surprise. Although, it is a great excuse to lie on the couch in the afternoon and watch movies.

I have a meeting with onc. on 6/12 to start the next treatment, which will probably be the chemo navelbine. I was hoping for another clincial trial, but I don't think that's in the cards right now.

So, that brings me up to date. I am doing okay, other than the back pain and some SOB which comes and goes. I continue to stay involved in the kids activities. I've said all along that they are what keep me going, and that remains true today. Sometimes, spending time with them, when all I want to do is climb into bed an pull the covers up over my head, is the best medicine in the world.

Tracy

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Tracy,

You're a brave and wise young woman. I'm sending you hugs and healing thoughts. Hope the balance of the radiation does the trick for the pain with minimal side-effects. Glad to hear when you get tired, you lay down and watch movies. Makes sense to me.

Judy in Key West

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Tracy - I am so glad to hear that your family came out of adversity stronger than ever. I so admire your attitude at looking for the positives in difficult times, although I expect that you have moments where it is difficult to see the positives. Thank goodness for the kids to keep you putting one foot in front of the other and not hide under the covers (at least not too often-once in awhile a good hide is just what is needed).

I am so sorry to hear that you are having such pain though. That is such a terrible thing because it colors everything black. Praying that the radiation smartens that up in a hurry. You and Sandra will be the Navelbine twins and it should be the golden ticket for both of you!

Thanks for the update - I think of you often and keep good thoughts for you always.

Hugs,

Linda

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Tracy-

So glad you posted - you have been among the missing here lately.

I am sorry to hear about your pain - I do so hope the radiation helps. Being in constant pain is so draining on a person.

This is such a difficult road, and one thats even harder when we have kids at home. Sometimes the only reason I get out of bed is so that Nick won't know that I don't feel well.

Just to let you know - I have been on Navelbine for several months now, and my last scan actually showed shrinkage - the first time in 2 1/2 years!!!!! I hope and pray for good results for you with this drug!!!! It has few side effects; I understand that some people have some pain in the arm that they receive it in altho it has never bothered me. Its a 10 minute "push" so the chemo session goes pretty quickly. Only problem is it is weekly for three weeks, then off 1 week.

Good luck and please let us know how the radiation and the chemo goes.

Hugs - Patti B.

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Good to hear from you Tracy. I certainly hope that your upcoming treatment eases your pain and discomfort. Praying for you and wishing you the best.

Carol

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Glad to see this update Tracy. I hope the pain subsides soon and the effects of radiation aren't too taxing. I also pray that your next treatment plan will be a total success. Keep us posted. We are here for you.

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My dear friend Tracy. I too am praying that your radiation does the trick for your pain. There is nothing worse than living with horrible back pain.

For me too, it is my kids that keep me going. I make efforts everyday that I would probably otherwise not, if it were not for enjoying spending time with them and to keep their spirits up. We all know this is not fair to anyone, especially our kids.

I use a walker when I go out and about. So am making choices similar to you with your wheelchair. Hey, I bet we would make quite the stir in the mall with our daughters! Two hot moms shopping it out with their daughters wheelchair or walker be darned! Get out of our way or we might need to pull our canes out next!

I like Linda's idea of us being navalbine twins! Watch out K-Mart shoppers! We have spotted a couple of hot moms on some kind of new drug!

Seriously, I will pray for your success on navalbine and even harder for back pain relief in the short term. We both need to live long enough to have earned our wheelchair and walker!

And oh yeah...just writing this post has made me a feel a bit better tonight.

Thanks for being my friend

Sandra

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Tracy,

Just dropping in to say that I wish you, Tracy, and all of you on the regimen much success on the Navebine (Bill has been tolerating it well and he is a bit "older." :wink:

The only outstanding side effect has been some fatigue.

Keeping all of you in my prayers for good outcomes.

Barbara

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Ladies,

I just finished "Kitchen Table Wisdom" and one of my favorite bits was when she talked about a new sampler "If something is worth doing, it's worth doing half-assed."

You both seem to be doing a lot more than 1/2, but it is an interesting idea. Rather than worry about what we can't do, go ahead and do what we can, and if we leave a movie half way through, so what? Or, if you gotta use a wheelchair to shop, so what? I tried to do some shopping last weekend and could barely lift my arms to move the clothes on the rack. Kind of wished I could just sit down. Actually ended up with a pair of jeans and a swimsuit! Two of the hardest things to buy though I was looking for some tops (last year's that show some chest just don't feel right with the port a cath wounds and radiation burns...) Now we will see how long it takes me to get into a pool. Rambling here.

I think you are both amazing and wish you and your families all the best.

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Tracy~

I have been thinking of you and I'm so glad you posted. I am glad that the family issue is resolved and all is well there. My family also went through a hard time during John's illness and we came through it stronger so I can relate to those issues. As a caregiver, the mental stress is so overwhelming that you're just not in your right mind half the time. I look back and realize now that I should have been in therapy during John's illness.

I hope this drug is your magic bullet and you are able to enjoy graduation and all the upcoming events with your kids. I think of you often and wish you well~

Rochelle

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(((Tracy))),

Hugs to you and much admiration for your attitude toward the challenges being thrown at you. You are truly an inspiration and by posting you give a gift to others who may be faced with hurdles in their battle . I'm sorry that the clinic trial is no longer working for you and I'm sorry you are experiencing back pain. My prayers are with you and your family as you go through the radiation and start on a new treatment. I'm glad to hear that the problems that you hinted at earlier are now resolved . Keep up the great attitude and enjoy all those special times with your family. You remain in my prayers.

Hugs,

Sue

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As others have said, I too think of you often. I was hoping that since we hadn't heard from you, that life was moving forward and the trial was working wonders.

You are a strong, amazing young woman. But you don't have to be Hercules. I believe that your children would benefit if they understood a little more the emotional roller coaster you are on. Smile and laugh a lot but cry a little too, you deserve that.

Hope the Navelbine is the magic bullet. Enjoy your family and your summer.

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glad your doing good Tracy and a Big Thank You for the trial. You are a Pioneer in cancer research, now!!!!!!

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Dearest Tracy,

I like many others have been wondering how you are doing. I am so glad you posted with an update.

I am so sorry for all the pain you are going through. But you are an amazing woman who is so strong with an incredible attitude who pushes herself to be there for your beautiful family even though "you feel like pulling the covers over your head"

I have had back pain before and was out of work for 6 weeks so I can relate somewhat to what you are feeling. I was bed ridden most of the time. But Kudos to you young lady for getting out there for your family! It takes tremendous will to do that.

I pray that the navelbine works for you and that your back pain will become a thing of the past.

Just want you to know that I admire you and will pray for you to be pain free. Stay strong and know that we are here for you.

By the way, the picture of you and your family is PRICELESS.

Maryanne

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Tracy,

So glad to hear from you. I hope the radiation takes care of the back pain. It did wonders for my mom, so I hope it will for you too. I love the fact that you aren't going to let this stupid disease stop you from enjoying time with your family. I'll be saying a prayer that you get a great response from the new chemo!

Susan

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Tracy,

I always look forward to reading your updates. Thanks so much for posting. Sending prayers for big success with your new treatment. You are such a wonderful inspiration to every one of us. Keep the faith! And a big congrats to the graduate!! Ellie

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Tracy.... It was so great to read your post and as usual, I'm thinking what a remarkable young woman you are. I so admire you and the great attitude you always manage to have, even when things aren't 100%. Please know that you are in my prayers and I will be right here, thinking of you and praying you through this rough spot. So very good to hear from you!!!

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