SUPPORT GROUPS FOR SPOUSES IN RIVERSIDE, CA

marines911
marines911 Member Posts: 68
edited March 2014 in Breast Cancer #1
My name is Thomas Reyes and my wife was diagnosed with Triple Negative Breast Cancer (TNBC) in October of 2008. My wife has been through the initial chemo (TAC) and had a bilateral masectomy and 7 weeks of radiation. Once the radiation was over, my wife requested for more chemo and even through the oncologist was resistant agreed and had another set of scans to use as a baseline. That is when we discovered that the cancer had matisized in the spine, lung and chest wall. Radiation oncologist used Cyberknife and it was successful, but the next line of treatment that included Avastin was unsuccessful. The next step was a clinical trial with the PARP inhibitor, some mixed results, but overall progression resulted in her to be removed from the trial. Now the cancer has progressed into the lower spine L1-3, which was treated with radiation, and is in her spleen (not common). Recent scans showed more progression in her T9 (again) and her liver. The good news is that now that we switched to a breast cancer specialist and a new line of treatment there seems to be some hope. The tumor marker is down and the blood transfusion for the anemia has helped. The pain medication (Oxycotin) was not helping and was making her constipated, the new Fetnal patch has helped and not so hard with her digestion, but seems now that she may have to have it increased. I would really appreicate if anyone can provide a support group for family members that are going or that have gone through this. My family consist of 3 girls and two boys ages ranging from 15-2 years old. Prayers are always welcomed and appreicated.

Comments

  • Skeezie
    Skeezie Member Posts: 586 Member
    #2
    I don't live in Ca but I wanted to welcome you to this board.
    You and your wife and family have been on a very difficult journey and I am praying this new doctor will get the results we all hope and pray for. Please keep us posted as to your wife's progress..

    I would also like to thank you for being a Marine and protecting our country.

    Hugs, Judy :-)
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #3
    Skeezie said:

    I don't live in Ca but I wanted to welcome you to this board.
    You and your wife and family have been on a very difficult journey and I am praying this new doctor will get the results we all hope and pray for. Please keep us posted as to your wife's progress..

    I would also like to thank you for being a Marine and protecting our country.

    Hugs, Judy :-)

    I live in Corona, California .. and believe me due to lack of
    funding and ownership .. many groups have gone by the wayside .. Please contact ACS .. 800 # and check out programs .. I know that my husband had been going to:

    Man to Man
    6355 Riverside Aven
    Riverside, CA 92506
    sponsored by ACS .. sorry I don't have a telephone # for you.


    Good Luck .. Just a footnote I was born on Camp Pendleton Marine Base. My dad was a Sargent in the Marine Cor for many years.

    I would like to Thank you for my restful sleep at nights.


    Vicki Sam
  • patti anne
    patti anne Member Posts: 101
    #4
    I don't either
    I don't live in CA either, but wanted to welcome you as well. My husband just retired..last week Yay!!...after 25 yrs in the Marine Corps. I hope you find the support you need. We are always here.

    Patti
  • marines911
    marines911 Member Posts: 68
    #5
    VickiSam said:

    I live in Corona, California .. and believe me due to lack of
    funding and ownership .. many groups have gone by the wayside .. Please contact ACS .. 800 # and check out programs .. I know that my husband had been going to:

    Man to Man
    6355 Riverside Aven
    Riverside, CA 92506
    sponsored by ACS .. sorry I don't have a telephone # for you.


    Good Luck .. Just a footnote I was born on Camp Pendleton Marine Base. My dad was a Sargent in the Marine Cor for many years.

    I would like to Thank you for my restful sleep at nights.


    Vicki Sam

    THANK YOU
    I just wanted to say "Thank you" and I will find out more. I do have our Church, but the meetings for the cancer support group meets during lunch and I'm on base. I have tried counseling services on base, but really haven't had much luck. This is the type of support group I was thinking about. Hopefully they can work with me and some sort of time frame that meets my work schedule.

    My son that is 2 was born on Camp Pendleton and he is the reason why we found out that my wife had cancer, what a MIRACLE and BLESSING. Your welcome for the restful nights, but it really is a pleasure to serve the best uniform and country.

    Thanks again,

    Thomas
  • marines911
    marines911 Member Posts: 68
    #6
    patti anne said:

    I don't either
    I don't live in CA either, but wanted to welcome you as well. My husband just retired..last week Yay!!...after 25 yrs in the Marine Corps. I hope you find the support you need. We are always here.

    Patti

    SEMPER FI
    Thank you for your response. I'm just finding out that I really do need someone else that I can relate to and talk. I have plenty of friends and the LORD gives me strength, but I'm only human and it helps knowing that there are friends like you out there willing to lend an ear and share your experiences. FEAR is the worst feeling and HELPLESSNESS is the other.

    Thanks again,

    Thomas
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #7
    marines911 said:

    SEMPER FI
    Thank you for your response. I'm just finding out that I really do need someone else that I can relate to and talk. I have plenty of friends and the LORD gives me strength, but I'm only human and it helps knowing that there are friends like you out there willing to lend an ear and share your experiences. FEAR is the worst feeling and HELPLESSNESS is the other.

    Thanks again,

    Thomas

    Thomas,
    I'm glad you found us -- I just want to encourage you to come here whenever you like and let us help you however we can. We have several husbands here who I'm sure share some of your experiences and feelings, and we're always willing to lend an ear.

    Traci
  • Aortus
    Aortus Member Posts: 967
    #8
    TraciInLA said:

    Thomas,
    I'm glad you found us -- I just want to encourage you to come here whenever you like and let us help you however we can. We have several husbands here who I'm sure share some of your experiences and feelings, and we're always willing to lend an ear.

    Traci

    Thomas,

    My beloved wife Moopy was diagnosed in November 2008 with Stage IIIa TNBC, had a left radical mastectomy six days later, then 6 rounds of TAC followed by 35 rounds of hyperthermic radiation. Treatments ended in August 2009. Like you, I am humbled to be married to such a strong and beautiful woman.

    So far we are 20 months out and doing well, and we are both very sorry to hear about what you and your wife are being put through with her recurrence. BC is a brutal beast, but being primary caregiver isn't exactly a walk in the park either. You will find support here. If there is any way I can be of support or other assistance to you, just let me know. If there is any way I can be of help, just let me know. In the meantime, please keep checking in with us.

    Best,
    Joe (Aortus)
  • marines911
    marines911 Member Posts: 68
    #9
    Aortus said:

    Thomas,

    My beloved wife Moopy was diagnosed in November 2008 with Stage IIIa TNBC, had a left radical mastectomy six days later, then 6 rounds of TAC followed by 35 rounds of hyperthermic radiation. Treatments ended in August 2009. Like you, I am humbled to be married to such a strong and beautiful woman.

    So far we are 20 months out and doing well, and we are both very sorry to hear about what you and your wife are being put through with her recurrence. BC is a brutal beast, but being primary caregiver isn't exactly a walk in the park either. You will find support here. If there is any way I can be of support or other assistance to you, just let me know. If there is any way I can be of help, just let me know. In the meantime, please keep checking in with us.

    Best,
    Joe (Aortus)

    NICE TO SEE
    that I'm not alone. I knew that already, but nice to speak to someone else that has gone through it. Lord knows that I have made plenty of mistakes and said all the wrong things or nothing at all. The one thing that I have learned is to ask the oncologist as many questions as possible and many times until I have a real understanding, because asking my wife after she had already explained it to me for the hundrenth time became very frustrating for her and me. I tend to get angry when my wife makes certain comments that make me feel either impatient or absent minded. Of course after a few minutes of cooling off, then the guilt kicks in for even getting upset and wasting time on whatever was going on at the time. My kids are having a heard time dealing with this issue, but none as bad as my 15 year old, who at this time refuses to speak to anyone, including family or counselor, about this matter. It was suggested that I continue to make appointments with different counselors until she feels comfortable with one, because not getting her the help and something happening would be far worse. My wife is too tired from all the battling with the cancer, back pain, depression and now teenager rebellion. I wanted to know if I should just schedule the appointment and then tell her or have this discussion again, but this seems to upset her just as much. Any advice would be greatly appreciated.

    Thomas
  • Aortus
    Aortus Member Posts: 967
    #10
    marines911 said:

    NICE TO SEE
    that I'm not alone. I knew that already, but nice to speak to someone else that has gone through it. Lord knows that I have made plenty of mistakes and said all the wrong things or nothing at all. The one thing that I have learned is to ask the oncologist as many questions as possible and many times until I have a real understanding, because asking my wife after she had already explained it to me for the hundrenth time became very frustrating for her and me. I tend to get angry when my wife makes certain comments that make me feel either impatient or absent minded. Of course after a few minutes of cooling off, then the guilt kicks in for even getting upset and wasting time on whatever was going on at the time. My kids are having a heard time dealing with this issue, but none as bad as my 15 year old, who at this time refuses to speak to anyone, including family or counselor, about this matter. It was suggested that I continue to make appointments with different counselors until she feels comfortable with one, because not getting her the help and something happening would be far worse. My wife is too tired from all the battling with the cancer, back pain, depression and now teenager rebellion. I wanted to know if I should just schedule the appointment and then tell her or have this discussion again, but this seems to upset her just as much. Any advice would be greatly appreciated.

    Thomas

    Ah... female psychology
    Thanks for responding so quickly, Thomas!

    Moopy has said for years that I live in a constant state of low annoyance, which means it must be true. But she herself points out that during the whole ordeal - diagnosis, surgery, chemo, rads - I never once acted annoyed. Which is all well and good, but that's not to say I never *was* annoyed. Like I suggested before, this BC thing is beating you up too, and you'd have to be superhuman not to get angry sometimes. Maybe it will help to realize that you're really not getting angry at your wife at all, but at the beast that is trying to ruin your lives. At least that's how I figured it out in my own case.

    As for your 15 year old (whom I presume is your daughter), I am absolutely clueless. It's been years since I was a teenager and I've never ever been a teenaged girl. You could probably write an entire book about what I don't know about female psychology.

    Luckily, this board is full of women who have had to go through this same terrible experience of explaining BC to their teenaged daughters and helping them cope. Even better yet, they used to be teenaged girls themselves. Not that they always get it right with their own girls (there are plenty of posts on this topic). But I'm sure they will be able and willing to help a poor hassled Dad out with their good advice, if you post a separate thread explaining your situation.

    Best of luck!
    Joe
  • Hubby
    Hubby Member Posts: 325
    #11
    Sorry You and Your Wife Are Going Through This
    Sorry you need to be here. My suggestion is to use this board as a support group; that's what I'm doing. My wife is triple negative and undergoing chemo as I type this.

    I vent here on this board so I don't bring it home. As much as it's not about me; I am the husband of a woman going through chemo for breast cancer. This is the hardest thing I have ever had to deal with in my life; harder than my parents death.

    So my guess is that this the hardest thing you have ever had to go through. We're here.

    Bob
  • marines911
    marines911 Member Posts: 68
    #12
    Hubby said:

    Sorry You and Your Wife Are Going Through This
    Sorry you need to be here. My suggestion is to use this board as a support group; that's what I'm doing. My wife is triple negative and undergoing chemo as I type this.

    I vent here on this board so I don't bring it home. As much as it's not about me; I am the husband of a woman going through chemo for breast cancer. This is the hardest thing I have ever had to deal with in my life; harder than my parents death.

    So my guess is that this the hardest thing you have ever had to go through. We're here.

    Bob

    GRATITUDE
    I really appreciate your advice and I will use this forum, because I can't seem to find a group that meets that I can find the time to attend. This is the hardest thing I have had to face, and watching my wife on her low days is frustrating and I don't like feeling helpless and useless. Trying to deal with the stress has not been easy and my comfort is FOOD, and that is not good, especially being a Marine, I have to maintain weight standards and I have not, I'm actually 20lbs over my max and find it hard to get the motivation to even do any physical training. I never want to leave the house, unless for work and while there during lunch I do some form of exercise. Wife has at least one appointment a week and many times have to go home early, becasue she is depressed or just plain tired.

    Praying and keeping the faith.

    Thomas
  • Hubby
    Hubby Member Posts: 325
    #13
    marines911 said:

    GRATITUDE
    I really appreciate your advice and I will use this forum, because I can't seem to find a group that meets that I can find the time to attend. This is the hardest thing I have had to face, and watching my wife on her low days is frustrating and I don't like feeling helpless and useless. Trying to deal with the stress has not been easy and my comfort is FOOD, and that is not good, especially being a Marine, I have to maintain weight standards and I have not, I'm actually 20lbs over my max and find it hard to get the motivation to even do any physical training. I never want to leave the house, unless for work and while there during lunch I do some form of exercise. Wife has at least one appointment a week and many times have to go home early, becasue she is depressed or just plain tired.

    Praying and keeping the faith.

    Thomas

    Food is better than booze,
    Food is better than booze, keep it all in moderation; and the regular life problems keep on coming. I have a 16 yo daughter and a 13 yo son. Not rebellous, but going through the teenage years is not easy; boy problems; girl problems; friend problems. It's wasn't easy for me to be a teenager, and I don't think that's changed in the past 30 years. Remember that feeling that everyone else was popular except you?

    Try and find some time to do some family things, even if it just playing a board game; or going for a picnic (bring a lot of fruit). Something to remind all of you that you still have each other.

    Keep checking in on your daughter, ask her how her day was, and when she says "good" ask follow-up questions to get a conversation going. Ask her how she is doing with mommy having cancer. Let her know that her feelings are normal. It won't happen overnight.

    Sending prayers

    Bob
  • marines911
    marines911 Member Posts: 68
    #14
    Hubby said:

    Food is better than booze,
    Food is better than booze, keep it all in moderation; and the regular life problems keep on coming. I have a 16 yo daughter and a 13 yo son. Not rebellous, but going through the teenage years is not easy; boy problems; girl problems; friend problems. It's wasn't easy for me to be a teenager, and I don't think that's changed in the past 30 years. Remember that feeling that everyone else was popular except you?

    Try and find some time to do some family things, even if it just playing a board game; or going for a picnic (bring a lot of fruit). Something to remind all of you that you still have each other.

    Keep checking in on your daughter, ask her how her day was, and when she says "good" ask follow-up questions to get a conversation going. Ask her how she is doing with mommy having cancer. Let her know that her feelings are normal. It won't happen overnight.

    Sending prayers

    Bob

    I don't want to talk about it
    is what she says whenever I bring up mom's condition. My daughter is really not happy, becasuse she is going to be home schooled due to her bad grades and behavior in school, things like detention for talking and talking back to the teacher. I have been able to get my teen talk, but once she sees that I'm heading towards talking about mom's condition, she shuts down.

    Thomas
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #15
    Hello Marines911
    Thomas, Sending thoughts & prayers to you and your family. Keep the faith!

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