So im new...

Tracie1981
Tracie1981 Member Posts: 125
I'm not really for sure how anything works, I've only known that I've had cancer since Feb 6th. 2weeks after i had my daughter I was diagnosed with nodular sclerosing Hodkins. I have a 8 inch by 5 inch mediastinal mass, and a mass in my throat along with the lymph nodes on my right side of my neck. Its very terrifying to me as I am sure it was with everyone of yall. I'm a mother of 4 beautiful children and have only done one session of chemo. They have me on the ICE treatment because they feel as if my heart is not strong enough to withstand the other treatment that they would normally offer for this. I have already lost all of my hair, which is completely heartbreaking because now my oldest daughter who is 9, cries when i take my hats off. It breaks my heart to know that she knows how sick i am. I just hope that this gets easier, im so scared about chemo and the effects it will have on our lives. I just need to make it through.

Comments

  • yesyes2
    yesyes2 Member Posts: 591
    Hi Tracie,

    I am so very sorry that you have had to joined our Lymphoma Cancer Club. But I'm glad that you are reaching out for help and information. It is a very scary journey, sometimes very hard, but keep in mind that it is a do able journey. Everyone on this board has or is experiencing their cancer journey and I hope that their experiences will help you.

    I can't imagine what it would be like to be diagnosed so soon after the birth of your daughter. My heart goes out to you. Do you have support and help from your family and friends? Or perhaps your church? Where I live there is a support group for children who's parent has cancer. Several of my friends have young children who attend and it has really helped them in expressing their fears and questions about their parent. Perhaps your area has something like that. I also go to several cancer support groups when I am feeling up to it and find being with others who also have cancer really helpful.

    I have just finished my final cycle of RCHOP for NHL and all though the trip was difficult it was only 4 months and to my surprise it wasn't as bad as I had feared. There were days when I wanted to quit but they past and the next day looked brighter. I hope it goes well for you. Keep us posted on how you are doing. And sorry this post was so long.

    Best to you,
    Leslie
  • Stacey12
    Stacey12 Member Posts: 2
    I'm so new
    Hi Tracie, I just found this sight the other day. When I saw your I'm so new I had to join so I could commet to you. My story is different Im older my daughter is grown and i live alone. So i know its going to be hard for you with kids. Im on my last 2 treatments. My first was awful I wasnt going back but had to. I shaved my head had long hair it was comming out fast. I didnt get a wig for 3 months. When i did threw the ACS for a 100 dollars. I felt great I love it. Went out to dinner the other night first outing Im down to 89lbs so felt funny going anywhere. I felt normal for the first time. It will get easier I know its hard to think that now. As the treatment starts working you will feel better. It took me till my 3rd round to be able to get up and around and do household chores. I do take pain killers and valium that helps me. So hang in there.I know you will make it. I will think of you and wish you well.
  • Tracie1981
    Tracie1981 Member Posts: 125
    Stacey12 said:

    I'm so new
    Hi Tracie, I just found this sight the other day. When I saw your I'm so new I had to join so I could commet to you. My story is different Im older my daughter is grown and i live alone. So i know its going to be hard for you with kids. Im on my last 2 treatments. My first was awful I wasnt going back but had to. I shaved my head had long hair it was comming out fast. I didnt get a wig for 3 months. When i did threw the ACS for a 100 dollars. I felt great I love it. Went out to dinner the other night first outing Im down to 89lbs so felt funny going anywhere. I felt normal for the first time. It will get easier I know its hard to think that now. As the treatment starts working you will feel better. It took me till my 3rd round to be able to get up and around and do household chores. I do take pain killers and valium that helps me. So hang in there.I know you will make it. I will think of you and wish you well.

    Thank you!!!
    Its a bad thing that I think any of us have to post on here but its also good to know there are others! Thank you so much for taking the time out and chatting with me. It really did help. I feel so alone right now at home, I do have my hubby but its getting harder because it feels as if the motions hes going through are only out of strength for me and I feel like im exhausting him. I did get a wig, its kind of itchy and I have no more hair :( I havent gotten to get much out of the house yet, I'm hoping after this next round of chemo I'll be more up to it. My friends were hoping to take me out before my next round, because i wont be able to do much for awhile after. Chemo is really rough. How old is your daughter? I have a 9 yr old little girl, Laycee, an 8 yr old little boy, Bryce, a 4 yr old little girl, Baylee and my 5 week old baby girl Emma. They are my life, and they are the ones that are getting me through this. :) Tracie
  • JoanieP
    JoanieP Member Posts: 573

    Thank you!!!
    Its a bad thing that I think any of us have to post on here but its also good to know there are others! Thank you so much for taking the time out and chatting with me. It really did help. I feel so alone right now at home, I do have my hubby but its getting harder because it feels as if the motions hes going through are only out of strength for me and I feel like im exhausting him. I did get a wig, its kind of itchy and I have no more hair :( I havent gotten to get much out of the house yet, I'm hoping after this next round of chemo I'll be more up to it. My friends were hoping to take me out before my next round, because i wont be able to do much for awhile after. Chemo is really rough. How old is your daughter? I have a 9 yr old little girl, Laycee, an 8 yr old little boy, Bryce, a 4 yr old little girl, Baylee and my 5 week old baby girl Emma. They are my life, and they are the ones that are getting me through this. :) Tracie

    You will get through
    Tracie you will get through this. You have a wonderful family and it is o.k to ask the older children to help do things. If you had to get cancer Lymphoma is very treatable. If you believe in a higher power, call on him. I did and I made it through on his strength not mine.
  • Tracie1981
    Tracie1981 Member Posts: 125
    JoanieP said:

    You will get through
    Tracie you will get through this. You have a wonderful family and it is o.k to ask the older children to help do things. If you had to get cancer Lymphoma is very treatable. If you believe in a higher power, call on him. I did and I made it through on his strength not mine.

    Thank you
    It has been quite rough but I'm really hopeful and getting to beable to go home after the chemo treatments now have helped me a lot! I dont have to worry about being away from my kids for to long. God has blessed me with their strength. I just need to see that everyday. Thank you and God Bless you and your family!
  • Stacey12
    Stacey12 Member Posts: 2
    Stacey12 said:

    I'm so new
    Hi Tracie, I just found this sight the other day. When I saw your I'm so new I had to join so I could commet to you. My story is different Im older my daughter is grown and i live alone. So i know its going to be hard for you with kids. Im on my last 2 treatments. My first was awful I wasnt going back but had to. I shaved my head had long hair it was comming out fast. I didnt get a wig for 3 months. When i did threw the ACS for a 100 dollars. I felt great I love it. Went out to dinner the other night first outing Im down to 89lbs so felt funny going anywhere. I felt normal for the first time. It will get easier I know its hard to think that now. As the treatment starts working you will feel better. It took me till my 3rd round to be able to get up and around and do household chores. I do take pain killers and valium that helps me. So hang in there.I know you will make it. I will think of you and wish you well.

    Cancer is gone
    Hi Tracie, Just had my last treatment. Ctscan shows it gone and I thought I was going to die.I hope your feeling better you have to live. I always wished I had more kids just didnt have the money. My husband die 4 years ago. He would of been a big help and scared just like your husband is I bet. I live in Tucson and my daughter and grandson live in Las vagas and my mom lives in San Deigo Im going to San diego as soon as I feel better just had chemo yesterday. Its the stop and wait. I didnt know what that was for along time. I guess they check for the next 2 years if it comes back. I thought if its gone its gone. I got news letters and didnt read all of them. Was burned out on cancer all I here on tv it is everywhere. So now I'm freaked bye Stacey
  • Tracie1981
    Tracie1981 Member Posts: 125
    Stacey12 said:

    Cancer is gone
    Hi Tracie, Just had my last treatment. Ctscan shows it gone and I thought I was going to die.I hope your feeling better you have to live. I always wished I had more kids just didnt have the money. My husband die 4 years ago. He would of been a big help and scared just like your husband is I bet. I live in Tucson and my daughter and grandson live in Las vagas and my mom lives in San Deigo Im going to San diego as soon as I feel better just had chemo yesterday. Its the stop and wait. I didnt know what that was for along time. I guess they check for the next 2 years if it comes back. I thought if its gone its gone. I got news letters and didnt read all of them. Was burned out on cancer all I here on tv it is everywhere. So now I'm freaked bye Stacey

    Its gone!!
    Thats great news!! I'm hoping I will get news like that too soon. I'm hoping they wont have to do to many more treatments but I know I'll have to do this until atleast June, unfortunately. I'm tired of feeling tired all the time. I can understand how stressed it can be to not know what the future holds, especially when it comes to possibly having the cancer to come back. Thats a very frightening thought in itself but you have to stay positive, it took me some time to think that way and I still have my doubts. But i have to stay as positive as I can. Goodluck sweetie, and you do have really good news to live on, its going to be ok. I know everything will stay good for you :) God Bless!
  • winthefight
    winthefight Member Posts: 162
    commenting on ICE
    Hi again Tracie,

    I too had ICE. I had it with Rituxin, so actually it's R-ICE. I had 6 rounds of it. So,
    I can relate to your experience. The first round is very scary. But don't give up. It gets better with each treatment. Once you are discharged from the hospital, you feel like you're surroundings are in slow mode. The next day, you are probably going to be in a LOT of pain. But miraculously, you are 100% better two days from your release. The pain will come from you coming off the steroids.

    I have been off chemo for 16 months. I have been in full remission since then. The ICE works incredibly well. I am on no meds. It's a hard journey, but it is so worth the walk.

    As for the fatigue (you feeling tired and not wanting to go out). That is a side effect of treatments. The best thing to do is get out and exercise. Yoga, T'Chi, anything that gets you out of bed/house. Even if it is walking from your door to the mailbox. It doesn't have to be anything big. But there are studies that it works. Exercising definitely worked for me! When I went to the gym on a regular basis..I had so much energy.

    Keep your eyes on the prize, a full life with your family. Pray....if you don't believe in prayer, ask others that you KNOW has a prayer life to pray. These ingredients have worked for me, so I know it will work for you.

    ACS also sponsors something called, Look Good Feel Good/better. They provide Dept store skin care and make up to you. Some locations will also provide head coverings. So, if the scratchy wig thing isn't working for you, try another type of covering.

    Please feel free to email me on this site. And, if you ever want to chat, please join us in the chat room here. We laugh, we vent, we talk about food! There are a lot of caring people to help you during this journey.

    ICE is a good thing! Watch, you'll see.

    Continue to do well.
  • Tracie1981
    Tracie1981 Member Posts: 125

    commenting on ICE
    Hi again Tracie,

    I too had ICE. I had it with Rituxin, so actually it's R-ICE. I had 6 rounds of it. So,
    I can relate to your experience. The first round is very scary. But don't give up. It gets better with each treatment. Once you are discharged from the hospital, you feel like you're surroundings are in slow mode. The next day, you are probably going to be in a LOT of pain. But miraculously, you are 100% better two days from your release. The pain will come from you coming off the steroids.

    I have been off chemo for 16 months. I have been in full remission since then. The ICE works incredibly well. I am on no meds. It's a hard journey, but it is so worth the walk.

    As for the fatigue (you feeling tired and not wanting to go out). That is a side effect of treatments. The best thing to do is get out and exercise. Yoga, T'Chi, anything that gets you out of bed/house. Even if it is walking from your door to the mailbox. It doesn't have to be anything big. But there are studies that it works. Exercising definitely worked for me! When I went to the gym on a regular basis..I had so much energy.

    Keep your eyes on the prize, a full life with your family. Pray....if you don't believe in prayer, ask others that you KNOW has a prayer life to pray. These ingredients have worked for me, so I know it will work for you.

    ACS also sponsors something called, Look Good Feel Good/better. They provide Dept store skin care and make up to you. Some locations will also provide head coverings. So, if the scratchy wig thing isn't working for you, try another type of covering.

    Please feel free to email me on this site. And, if you ever want to chat, please join us in the chat room here. We laugh, we vent, we talk about food! There are a lot of caring people to help you during this journey.

    ICE is a good thing! Watch, you'll see.

    Continue to do well.

    Thank you sooo much!!
    I will definitely have to look into that, Look Good Feel Good, thing. I've actually been to the chat room once, since I still have problems sleeping on a regular basis. My sleeping habits have been somewhat etchy. I'm hoping to get on a better schedule but with a 2 mth old baby she controls my fate when it comes to sleep lol. It makes me feel so much better knowing there are wonderful people like you that put forth the extra time to come on here and chat with those who are going through this. I know you have been through it and have so much more experience than I and I appreciate your words. They really help me. Since I last posted they had changed my treatment to the ABVD. They did an echo that showed my heart had gotten stronger so I was able to switch. The ABVD is hard the first day but then they have you on so many steroids that my face has been swollen, im not for sure if its the steroids or the treatment yet, but someone said that they had probs with steroids making their face swell too. Do you know anything about that? I just cant wait to get back to normal, I'm tired of feeling fatigued all the time and I still feel like I'm putting to much pressure on my husband. Hes a marine and has to work from 6 am to 5 pm then he comes home and pretty much takes care of everything while I sleep off the rest of the day. I feel so bad for him. I do have a few good days where I can make him dinner and take care of the baby until bed but that was at the very end of my treatment cycle. Then the next day chemo again lol. Oh well, Thank you so much and will definitely check into those things, and I also praise God everyday because I know it could be so much worse its just going to be hard to get through this but we all have stepping stones we have to get across and I know I will take everything that I have and will go through and try to help someone to get through theirs when the time comes. God Bless you.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    Welcome
    I didn't have your treatment, I had CVP + Rituxan. I am so sorry you have to come on this journey, but you are not alone. I lost my hair and thought it was the most horrible thing, then the hotflashes hit and I suddenly thouroughly enjoyed being bald. I was amazed. I still cannot handle long hair LOL.

    Just take it a day at a time, and the more comfortable you become with your treatments and your new appearance everyone around you will feel more comfortable too. Find humor...it's a lifesaver. Laughter cures fear. I will tell you not to scrub your face too hard, you'll scrub your eyebrows off.

    Take care, and know you can do this.

    Beth