Feeling frustrated...and chemo hasn't even begun yet!

Jobi

I had my mastectomy on Dec. 22, and chemo starts next Thursday. For the past week, I have felt like a human pin cushion. I have had blood tests, bone scans, CTs, and more. I have been very positive up until now, and I am grateful that I have a good prognosis, but I am already tired of the constant doctor's appts and needle sticks. I am avoiding saying this to friends and family, because to them it sounds like I am whining or not interested in getting better when that cannot be further from the truth. I am just tired.

I have gone to a support group, which was helpful, but there were no young mothers there who could relate to my struggle; the average age of women was 60. I am 39 with three kids, 11, 6, and 5. I want to talk to women who can relate to struggling with the treatment, appointments, and everything else while trying to raise kids.

Today is not a good day.

jessiesmom1

Not Having a Good Day
Hi Jobi,

I got my breast cancer diagnosis in about 1/2011. I had a right mastectomy with a tissue expander put in, a medi-port implanted, 4 rounds of A/C, 12 rounds of Taxotere, expander exchange surgery and finally on 12/22/2011 revision-reconstruction surgery. I did not have any radiation. At the time of my initial diagnosis my daughter was 16 and my son was 18.

I think only those who have been through a cancer diagnosis can really relate to the frustration of the seemingly endless number of doctor appointments, blood draws, scans, procedures, etc. My daughter was a high school senior at the time of my diagnosis. A lot goes on in the life of a senior and I truly did not want to miss any of these milestones. My daughter was a varsity cheerleader. 3 days after my mastectomy the seniors were being honored at the last basketball game of the season. Even though I still had a surgical drain, I put on my biggest bulkiest sweater (to cover the tubing) and I went. The other cheer moms knew what was going on and were amazed that I was there. Prom was coming up and it was time to shop for a dress. Off we went to the mall - she did drive though. We shopped for a couple of hours. I do not think I have EVER been so tired in my life. I dragged into the house and collapsed on the living room couch. I remained there for three hours. I did not even have the energy to get to my bedroom. I wouldn't have missed it for the world and will remember that day always. I was also present for graduation and move in day at college. The only event of significance that I missed was the college orientation since that was in the midst of chemo so my husband went to that my himself with her.

You can do this. You probably will not feel 100% on many days but you just do the best you can. Ask for help from family and friends and church members. You are still their mom and they need to know you are trying to be there for them but may not be quite the same mom for a while. Come here to vent and whine. We are always here.

IRENE

Double Whammy

jessiesmom1 said:

Not Having a Good Day
Hi Jobi,

I got my breast cancer diagnosis in about 1/2011. I had a right mastectomy with a tissue expander put in, a medi-port implanted, 4 rounds of A/C, 12 rounds of Taxotere, expander exchange surgery and finally on 12/22/2011 revision-reconstruction surgery. I did not have any radiation. At the time of my initial diagnosis my daughter was 16 and my son was 18.

I think only those who have been through a cancer diagnosis can really relate to the frustration of the seemingly endless number of doctor appointments, blood draws, scans, procedures, etc. My daughter was a high school senior at the time of my diagnosis. A lot goes on in the life of a senior and I truly did not want to miss any of these milestones. My daughter was a varsity cheerleader. 3 days after my mastectomy the seniors were being honored at the last basketball game of the season. Even though I still had a surgical drain, I put on my biggest bulkiest sweater (to cover the tubing) and I went. The other cheer moms knew what was going on and were amazed that I was there. Prom was coming up and it was time to shop for a dress. Off we went to the mall - she did drive though. We shopped for a couple of hours. I do not think I have EVER been so tired in my life. I dragged into the house and collapsed on the living room couch. I remained there for three hours. I did not even have the energy to get to my bedroom. I wouldn't have missed it for the world and will remember that day always. I was also present for graduation and move in day at college. The only event of significance that I missed was the college orientation since that was in the midst of chemo so my husband went to that my himself with her.

You can do this. You probably will not feel 100% on many days but you just do the best you can. Ask for help from family and friends and church members. You are still their mom and they need to know you are trying to be there for them but may not be quite the same mom for a while. Come here to vent and whine. We are always here.

IRENE

We have young mothers here
who will give you strength and support. The reason most women in your support group were in their 60's is because that's when most women get breast cancer - and the younger women don't have time to come to support groups, they have kids to tend to. I hope you will find the understanding, advice, and support here. Some one's always here just about 24/7.

Suzanne

mom62

Me Too
Jobi,

When I was first diagnosed in 2003 my kids were 11, 7 and 5 years old so I know what you are going through. I'd like to tell you the appointments and pin cushion feelings will go away, but it will be a while. When going through chemo you will have to have blood tests before every chemo to make sure your white blood cell count is high enough and that you are not anemic. Appointments will consume your life for a while. I just tried to keep on track with the kids and not waiver from the life they knew except that mom would be tired and cranky sometimes but we were getting rid of the bad cancer inside me. I have rhumatoid arthritis and diabetes too so I am constantly at the doctors. I found therapy to be helpful (of course it's another appointment). Best of luck with your chemo and we are here for you.
Terry

Gabe N Abby Mom

One of the most important
One of the most important things you can do is accept help when it is offered. People will say things like 'let me know if I can help' because they don't know what else to say or another way to respond. Ask them if they really mean it...and if they do, ask if they can bring dinner, do the laundry, take the kids to the park, come to the house and play with the kids while you nap, clean the bathrooms, mow the lawn, whatever.

Also, put yourself and your family first. You can't take care of the kids if you are too run down, and dust can wait.

Find ways to play with the kids that can be restful for you...who can make the tallest stack of legos while you are resting on the couch? Can the oldest read to the younger ones while you all lay together in bed? Go fish or Old maid anyone?

When you are tired/grouchy/sad/frustrated, let the kids know that it's the medicine...and the medicine is killing the cancer. Look for reading materials that are age appropriate that will help the kids understand your cancer. If your cancer center has a social worker, they might have some suggestions...ask at the local library too.

My kids were 14 and 9 when I was originally diagnosed, I was 48. I hope this helps.

Hugs,

Linda

zahalene

Just so you know....
My kids were 1 and 12 when I was first dx. I had a total of 3 cancer dx over a span of 10 years. Lost both breasts somewhere in the shuffle, went through chemo two times for 10 months each, had daily rads for 5 weeks. Took meds that were almost worse than the disease (as it seemed at the time). My marriage also bit the dust after the crisis was over and I thought all was getting back to normal.
But here's the bottom line: I was 38 when all this began. I am now 63. Do the math. IT IS WORTH IT ALL!
I am in stable health, living as well as most, and better than many women my age, and with a man who really cares about me, in spite of my 'breastless' state (chose not to have recon).
One foot in front of the other....make it through the next 15 minutes....let others be involved in your race for life and then share the victory with them.
God bless.

aysemari

Hi
I didn't have kids but I too was a younger woman in most support
groups I attended. But I continued going and eventually met younger
women and became great friends even with some of the older women.

While the circumstances may differ, we can all still relate.

For me there came a time, when I stopped resisting and just gave
in to my new situation and accepted that I had to take it easy on
myself, no pressure, no fears to hold me down. I just treated myself
like the ill patient that I was. And that was the turning point for
me. Your children will have to come second.. you are your first priority now.
Take good care of yourself.

Hugs,
Ayse

Stephanie S.

Better days
I am also 39 with two daughters 13 and 17 and was diagnosed on Aug. 25, 2011. It will get easier. The appointments will lessen. You are going to have some bad days and it is ok. Just make sure your good days outnumber the bad. I have 6 more treatments to go and am counting the weeks. Wish you luck with your chemo.

SIROD

To Jobi
You have had a lot of wonderful advice here. I had a son who just started high school and one that started college at diagnose. I worked full time and learned to cut out all that was not important and necessary in my life. I accepted help from who ever offered it, be it a pizza, a ride home for my son (sport practice) anything that came my way.

When your newly diagnose, the appointments, tests can be overwhelming. Many of the tests are for staging purposes. Unless you have other complaints while in treatment that will require another scan, it should be only blood tests.

I waited until treatments were over before joining a support group.

Wishing you well on this journey.

Best,

Doris

Jobi

jessiesmom1 said:

Not Having a Good Day
Hi Jobi,

I got my breast cancer diagnosis in about 1/2011. I had a right mastectomy with a tissue expander put in, a medi-port implanted, 4 rounds of A/C, 12 rounds of Taxotere, expander exchange surgery and finally on 12/22/2011 revision-reconstruction surgery. I did not have any radiation. At the time of my initial diagnosis my daughter was 16 and my son was 18.

I think only those who have been through a cancer diagnosis can really relate to the frustration of the seemingly endless number of doctor appointments, blood draws, scans, procedures, etc. My daughter was a high school senior at the time of my diagnosis. A lot goes on in the life of a senior and I truly did not want to miss any of these milestones. My daughter was a varsity cheerleader. 3 days after my mastectomy the seniors were being honored at the last basketball game of the season. Even though I still had a surgical drain, I put on my biggest bulkiest sweater (to cover the tubing) and I went. The other cheer moms knew what was going on and were amazed that I was there. Prom was coming up and it was time to shop for a dress. Off we went to the mall - she did drive though. We shopped for a couple of hours. I do not think I have EVER been so tired in my life. I dragged into the house and collapsed on the living room couch. I remained there for three hours. I did not even have the energy to get to my bedroom. I wouldn't have missed it for the world and will remember that day always. I was also present for graduation and move in day at college. The only event of significance that I missed was the college orientation since that was in the midst of chemo so my husband went to that my himself with her.

You can do this. You probably will not feel 100% on many days but you just do the best you can. Ask for help from family and friends and church members. You are still their mom and they need to know you are trying to be there for them but may not be quite the same mom for a while. Come here to vent and whine. We are always here.

IRENE

Thank you!
Irene!
Wow! Reading what you went through certainly puts things into perspective. Sometimes, I still try to be supermom! I see that I have to give up on that one for a while - for the sake of everyone! Thanks for letting me vent!
Dorene

Jobi

mom62 said:

Me Too
Jobi,

When I was first diagnosed in 2003 my kids were 11, 7 and 5 years old so I know what you are going through. I'd like to tell you the appointments and pin cushion feelings will go away, but it will be a while. When going through chemo you will have to have blood tests before every chemo to make sure your white blood cell count is high enough and that you are not anemic. Appointments will consume your life for a while. I just tried to keep on track with the kids and not waiver from the life they knew except that mom would be tired and cranky sometimes but we were getting rid of the bad cancer inside me. I have rhumatoid arthritis and diabetes too so I am constantly at the doctors. I found therapy to be helpful (of course it's another appointment). Best of luck with your chemo and we are here for you.
Terry

Thanks Terry!
It is so nice to hear that someone understands. This discussion board is so wonderful! The support that it offers is invaluable!

Dorene

Jobi

zahalene said:

Just so you know....
My kids were 1 and 12 when I was first dx. I had a total of 3 cancer dx over a span of 10 years. Lost both breasts somewhere in the shuffle, went through chemo two times for 10 months each, had daily rads for 5 weeks. Took meds that were almost worse than the disease (as it seemed at the time). My marriage also bit the dust after the crisis was over and I thought all was getting back to normal.
But here's the bottom line: I was 38 when all this began. I am now 63. Do the math. IT IS WORTH IT ALL!
I am in stable health, living as well as most, and better than many women my age, and with a man who really cares about me, in spite of my 'breastless' state (chose not to have recon).
One foot in front of the other....make it through the next 15 minutes....let others be involved in your race for life and then share the victory with them.
God bless.

You are right!
I agree that it is worth it! Since my initial post, I have felt much better because of comments like these. Dorene

Lynn Smith

SIROD said:

To Jobi
You have had a lot of wonderful advice here. I had a son who just started high school and one that started college at diagnose. I worked full time and learned to cut out all that was not important and necessary in my life. I accepted help from who ever offered it, be it a pizza, a ride home for my son (sport practice) anything that came my way.

When your newly diagnose, the appointments, tests can be overwhelming. Many of the tests are for staging purposes. Unless you have other complaints while in treatment that will require another scan, it should be only blood tests.

I waited until treatments were over before joining a support group.

Wishing you well on this journey.

Best,

Doris

I understand
I understand your frustration being young and no one else with the disease your age in the group.I am one of the over 60 year old.Dx at 62 now 64.BUT everyday I hear of new cancer patients being in their 20's,30's and 40's.My niece was 30, my mom was 21 many years ago.Today though many more younger women are getting breast cancer.They are everywhere but don't go to support groups. At least not where you live.I would feel the same way as you if I walked in a support group and all the survivors were in their 20's 30's and 40's. You are so young to face this.But remember breast cancer patients are living longer lives.

At 40 is when mammos start for women.I am a advocate they start sooner.I started getting tumors when I was 20 like my mom but mine were benign. Only once in 42 years did I miss a check up with my breast surgeon. Then 42 years later the bc hit me. Found on a yearly mammo.

You at the borderline being 39 and a tumor was found.You must have been diligent and found it yourself or a doctors exam found it. Like someone said there are many on here your age that have been dx with BC.You came to the right place.

Wishing you the best. There is alot of support here for you.

Lynn Smith