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How Did We Get Here?

YellowsMom
Posts: 1
Joined: Mar 2009

2 1/2 months ago my daughter was a typical 18 year old stretching her wings and her independence, going to school, working and partying with her friends. Now she's waiting for her hair to fall out, her nausea to ease up and the clots in her arms to go away. She craves strawberries but she's neutopaenic so that's not an option. She calls Lovenox LOATHE-enox - it's the worst part of her treatment - at this point because it hurts so much. She's been ill since mid-January. And the doctors kept telling us she had Mono - a bad case of it. I never believed that was all it was. They told us it wasn't Leukemia so when they finally found out what she has - after 2 bone marrow biopsies - I was SHOCKED! I had stopped worrying about cancer a month ago. I feel helpless. So surreal! She's so strong and I am trying to be but the tears sneak up on me. Getting better at stopping them before they pour down my face - she was diagnosed with APL - a form of Leukemia that isn't seen terribly often - on March 16th. We've been in the hospital since then and I'm trying to find someone to talk to. This is such a lonely journey - fortunately she has so many wonderful friends! I have selfish thoughts that I feel so guilty about - it goes on and on and on!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Yellowsmom, if lovenox is the worst of the treatment, I would advise that your daughter do the following, and that she be the one to do it: pinch your stomach area, make a ridge or hill of sorts, and then inject quickly.

I learned this from a friend who is a diabetic, and while I was taking lovenox I never had an issue with pain. It works! At least for me ( I had clots develop in both legs). Eventually, hopefully, they will permit your daughter to switch to Coumadin, an oral medication that requires careful and frequent evaluation but still beats the heck out of injections or living at the hospital.

I hope that this helps.

Regarding your thoughts, they are completely normal. It is my contention that the caregiver, the lovegiver, has the more difficult job, and usually when I have to explain that, I advise that I would rather have the disease than to provide care for one of my children. It is less painful, much less painful, that way. I know.

I feel for you. And for your daughter, who sounds like a tough cookie from your limited description.

This is not the end of the world. It is, as I am occasionally reminded, the beginning of a new life, but it is not the end of the world.

And you are not alone. In this place, you have boards that you can post on, such as this one, and there is a Chat Room where you can interact in real-time. The people here truly do care about you and about your daughter and about your entire family. We have been through it, most of us, as either survivors (people who have or have had cancer) or caregivers/lovegivers (self-explanatory). Sometimes, folks are both.

A lady named TereB once listed some other sites that might be able to help, and I will post these here, although I am not sure that most of them apply to you. In the meantime, please consider therapy if you begin to feel overwhelmed, and, regardless, remember this axiom of mind: to be a good caregiver, you have to take good care of the giver!

Be sure to look out for your own physical and mental health, in whatever way you feel is most appropriate, even if it is just the occasional walk, or a jaunt to the mall, or some time at the local bowling alley. Whatever works for you.

Again, do not dismiss therapy, either for you or your daughter.

Here are the sites, in any event, regrettably short on caregiver/lovegiver assistance:

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

Best wishes, YellowMom, to your daughter, to you, and to your entire family.

Take care,

Joe

terato's picture
terato
Posts: 384
Joined: Apr 2002

Yellowsmom,

Joe has provided some excellent suggestions along with highly informative links. Here are a few diagnosis-specific ones which also may be helpful, of course, knowing diligent determined mothers, you probably have visited most of these sites already:

http://www.trisenox.com/patient/217-APL-Support.aspx

http://groups.yahoo.com/phrase/acute-promyelocytic-leukemia

http://organizedwisdom.com/Acute_Promyelocytic_Leukemia

http://www.ontopofcancer.org/leukemia_support_group.php

http://www.experienceproject.com/search.php?q=Acute+promyelocytic+leukemia

There are support groups meeting regularly in libraries, houses of worship, and community centers in many neighborhoods. Your local unit of the American Cancer Society and Leukemia and Lymphoma Society should help you find some local "up close and personal" support.

I was diagnosed and treated for teratoma (Lance Armstong's testicular cancer) 27 years ago and just yesterday learned that my tumor markers from my latest blood series were in the "normal" range. There is nothing stating your daughter will not be saying the same thing 27 years from now.

Love, Courage, and Prayers,

Rick

snowedin
Posts: 5
Joined: Nov 2008

I understand the "selfish thoughts". It is normal to feel regret and pain over life taking a detour that it was not supposed to take. I became a "caregiver" to my husband in 2003 and am still at it though he is in "remission" because of the side effects of treatment.

Prepare yourself for what could be a very long journey. You will need to be the "strong silent type" while your daughter does what she needs to do to survive the disease and its treatments (anger, pain, frustration, trauma, surgery, etc.). You will often be so bone tired (mentally and physically) that you think you can not deal with the situation one day longer - then you will handle the next situation. You will do all you can to help her through the process because you love her and the thought of her not being in your life is unacceptable, the good Lord willing.

The positive side of all this - yes, there is one - is that you will become stronger and become even more aware of what is truly important in life. Having the time to love more fully and embrace life more closely with those around you that you love and are important to you.

I understand that you will feel from time to time that you are no more than a servant to be used at the will of others and you hurt too and that nobody cares what you are feeling or that you are invisible because no one has time for you - this is normal through the process - it does not make you a bad person. You just have to try (and it is a very real challenge at times) to take care of yourself as best you can because you will not be able to do any good for anyone else (or yourself) if you don't. The situation will change and things will get better but you have to be healthy and strong to be there for it.

I will pray for you and your daughter - that you may have blessings and strength for the journey ahead. This site, I believe, is one of the Lord's ways of helping us through these situations and is available any time you have questions or need to vent or even a shoulder to cry on. I know I would have welcomed it had I known when my husband and I were going through the process. So - chin up, smile, and may the good Lord make this day a good one for you and your daughter.

Best wishes - Snow

green50
Posts: 318
Joined: Feb 2008

I too will pray for you and your daughter. Its a hard thing when we see what our loved ones are going thru. She sounds strong and positive and thats what she needs with your loving support. But do take time for yourself. I was both a caretaker and have cancer.
Prayers and Hugs
Sandy

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