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Malia...what's happening?

Always Hopeful
Posts: 234
Joined: May 2010

Dear Malia,

I woke up this morning thinking of you and your mom. How are you both doing? Have you gotten the full results from the scan, yet? When are you visiting the oncologist?

I continue to prayer that you receive strength and guidance at this time.

Peace and hope, JJ

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

JJ,
thank you for keeping us in your thoughts. well here it is as well as i can explain it with my limited info, she went to the oncologist and she really liked him and trusted him and her experience thus far with the conventional medical field has been very positive. everyone has been kind and quite accommodating with her scheduling etc. since monday, all of her appt.s have been moving really quickly. he has told her that without treatment, she has a few weeks or months left. he is sending her to a surgeon in the morning to discuss options. chemo, surgery, chemo etc... i will know more tomorrow and i will know what decision my mom has made. had myself a few good cries and now i'm just getting myself ready to fly out to see her and to be strong for her.
i will keep you all posted. thank you for your continued prayers and good thoughts.
Malia

Always Hopeful
Posts: 234
Joined: May 2010

Dear Malia,

I don't think I realized you were not in close proximity to your mom. Will someone be going with her to the surgeon?

Hang in there...cry when you need to...your mom needs much support for what is ahead.

I will keep you all in my prayers.

Peace and hope, JJ

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

she lives most of the year in PA with her new husband of 2 years. she lost her last husband 3 and a half years ago to cancer. her new husband is holding her hand all the way. my siblings will all rally and we will all be there for her in whatever ways she needs. she has a great big family and support system that loves her.

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Hello all you beautiful, brave women,
here is the latest- mom went to see surgeon and oncologist. with her cancer spread it is looking pretty grim, but we will not give up. she has colonoscopy and endoscopy on monday and she had her porto cath put in on friday and she ghas her first chemo treatment on tuesday. doctors say chemo, surgery, chemo. my siblings and i are going to visit her on thursday. she and her husband are a bit leery of all of us coming to visit becasue she is afraid she will be very sick and weak. we are going to be with her but try and stay as calm and uplifting as possible and stay out of the way. her husband is feeling very protective right now. he wants to be the one to be with her throughout all of her treatments etc. he is bordering on hostility towards us kids, but i am just going to bring the love and hope that this doesn't turn into some sort of contest. she needs all the love and support she can get. i think everyone is touchy and tired. probably nothing compared to what's to come. everything has moved very quickly since her current diagnosis to chemo in less than a week.
keeping the faith.
and keeping all of you in your various stages of healing in my thoughts and prayers as well.
thank you all,
Malia

Always Hopeful
Posts: 234
Joined: May 2010

Things certainly have moved quickly! It must be difficult for all of you to catch your breath. What chemo treatment is she going to be on...carbo/taxol? Most of us have been on that so she is not alone. I, in fact, was on taxol for each week for 18 weeks and the carbo was administered the first week of every three week cycle (for a total of 6 times). Neuropathy, hair loss and strange foot and toenail reactions accompanied the treatment. Hopefully, she will tolerate the chemo well, so that she can move on to the next part...surgery.

I'm sad to hear that there seems to be some tension with all of you and your mom's husband. Provide her, as you said, with all the love and support possible and try not to let it get into a power struggle. He's the one who is there with her everyday and for that you all have to be thankful. Perhaps letting him know that would be helpful too.

I have just finished my first cycle of GEMZAR (three weeks on, one week off) and will be seeing my medical oncologist this coming Friday to find out if she got approval to add AVASTIN on the first and third week of the cycle. My blood numbers have dropped a bit on the Gemzar (including my platelets which were not effected in the past) but other than feeling somewhat tired, I'm OK. Still taking my 30 minute or so moderate walk each day and went to my granddaughter's soccer game yesterday. Not working makes some of life easier for me so I can fit in my walk, naps etc whenever is best for me. But enough about me.

Hoping your mom handles the prep for her colonoscopy and endoscopy well and that all will be well. I wish her an easy chemo treatment on Tuesday, as she looks forward to seeing her children this week. Try to have patience, love, support and laughter be the menu of the day on Thursday.

Peace and hope, JJ

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

JJ-
thanks for your continued correspondence. it is so helpful. i am sorry to hear about side effects for you, but so hopeful to hear you are doing well as can be. seems you are a pistol too! mom has had a hard time with the pain as of late. she has some pain meds and i am sure will get more as we go along, but still very uncomfortable. her body was in a pretty weakened state to begin this process after the holistic treatments. not much reserve right now unfortunately. she actually doesn't even know what she will be taking. she knows nothing about her chemo treatments. she was so resistant to them from the start, that at this point, i think she just wants them to do it and tell her what's next. she tells me the stuff they tell her and i do research and look everything up and help her that way. she has always been one to research and gather as much info as she could on most everything, but i think that because things are moving so swiftly, she will learn as she goes along. part of her doesn't want to know and doesn't understand how it could possibly work.
i am grateful to her husband and will hopefully be able to convey our love to her and for her and to also show him we are grateful and not there to usurp his place. she can have a great big circle of support. there is no contest. but truth be told, i am the closest to her and i'm feeling mighty protective myself.
we don't know how long between treatments. she is getting through the prep for tomorrow but she says it sucks.
i told her today that i can't wait to see her dancing again and that is my happy place for her and she said, "YES"!!!!!!!

I like your menu! i will do my best to order up a bit of all of it for thursday. think i'll have the rest of the siblings order that too!

best,
malia

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Dear Malia:

I will keep your mom, you and your family in my prayers. Your mom's husband's protection is just a way for him to express his deep concerns for your mom. I hope that it does not get in the way and everyone can band together for your mom.

I wish your mom well for her first treatment on Tuesday. She may be very tired in a couple of days after her treatment, but should be well enough for visitors. Your mom sounds like a strong person and probably doesn't want a lot of fussing for her. But let her know that it helps you and your siblings handle this.

What part of PA will you be in?

My best to you.

Kathy

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

thank you kathy,
as always, your prayers are appreciated. i am definitely not interested in a power struggle with him. we don't know him well, so i am sure he is just a bit apprehensive about how we are going to behave around mom. funny, we range in ages from 30 to 42, but he may view us as kids still. i think she is more concerned that she won't feel well enough to visit. she's really in pain right now and the swiftness of all these procedures is leaving her pretty wiped out. but she knows we need to act right away.
we will be in white haven, pa.
how are you doing by the way?
malia

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Thank you for asking, Mailia. I just had a PET scan and it was good. So I won't need another one for six months. I had surgery in February for a small recurrence due to a biopsy, but everything they removed was negative. I just celebrated my 5 year mark.

I live south of Pittsburgh, PA thats why I asked, but I see your mom lives across the state. Please take care of yourself. It is easy not to do so at this time. I have three sons, 16, 18, & 20. At first, we didn't tell them because I thought they were too young (11, 13, 15), but I was wrong. A mom always tries to protect her child(ren). I know your mom appreciates everything you and your siblings are doing. She is blessed to have a great daughter like you.

Your mom is probably feeling overwhelmed with all of the stuff that is going on. There is nothing you can say, but by just being there it says it all. Also, if your mom is in pain, please do not take offense if she may say the wrong things. Between the pain and the meds, the chemo and the stress, it may be difficult at times for her to express her thoughts clearly.

Sending you {{{hugs}}},

Kathy

nempark
Posts: 683
Joined: Apr 2010

How comforting and to the point your words are. So true, nothing should be taken as an offense at this time, just the word "chemo" alone is stressful. Be well everyone. j

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

thumbs up!

mamasbabygirl's picture
mamasbabygirl
Posts: 29
Joined: Nov 2010

Kathy,
congrats on 5 yr mark!!!!! staying strong!
thank you for your words and advice. i will surely take it to heart. I am going to PA with an open mind and heart and i know this is not about me. I just want to be with her and let her take the lead with what she needs. I have tried to explain as best i can to my 12 year old and my 3 year old, but harder with 3. my 12 yr old is coming with me to see grandma and so is my sister's older son. they both want to go and seem to be handling it well enough. i am giving them wide berth to express whatever they need and to talk about it whenever they want. she has first chemo tomorrow and might be pretty tired on thursday. we will tread lightly.
keep you posted!

peace, love and laughter to you and yours today,

Malia

Always Hopeful
Posts: 234
Joined: May 2010

Hi Malia,

My thoughts and prayers are with your mom tomorrow during her first chemo...

Peace and hope, JJ

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