Cancer Support and Caregivers Who Are Trail Blazers!

[Tommi]

Originally Posted by cybersuebee

Another rose bush Tommi! My second anniversary is coming up soon. It's a good feeling, isn't it?

Prayers and hugs to all those fighting the fight.

Sue

soon for you.
WOW..It is a good feeling to be know we will celebrate 2 for you soon. See, it has been fast. i remember you posting way back when.

Plant a beautiful rose bush wherever you are, cybersubee. It is a good feeling to stop and touch the flowers. I am having some friends over, and I will plant my 6th in the front yard this weekend. I took huge roses from my yard to work on Monday.

My private celebration, to stop and smell the roses.

Love to all who carry the torch for those who no longer can.


Tommi

[Andrew, Jr.]

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet.

Andrew

[sweetcali]

Originally Posted by Andrew, Jr.

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet.

Andrew

I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali

[fiercegrrl]

Originally Posted by sweetcali

I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

[Oiler41]

Originally Posted by fiercegrrl

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

When my mom was dying with cancer and didn't want to eat, this is what I did as well. I mixed 1/2 ensure, 1/2 instant breakfast and but it in a blender with a banana. It helped keep her up with some protein until she got to the point that she couldn't drink anymore. She opted to not go through chemo and I supported her in that choice. For her, diagnosis to passing was seven weeks and one day. However, it is a fact that she was misdiagnosed nearly six months before the official diagnosis. Early diagnosis is certainly one of the largest keys to beating cancer. I wish everyone, both patients and caregivers, the best with their journey.

Glynn

[SuperFemme]

When I can't eat I just keep trying stuff until something is tolerable.

No worries SweetCali, I will be there soon to fatten you up! I have my handy-dandy recipes for blondes booklet and a lot of will power to make you feel better.

I will also show you how to make ensure tolerable. A girl has to add things sometimes.

[Andrew, Jr.]

Superfemme,

I have had 3 and 4 opinions on this. I have had blood tests run (ca125 and other labs), mammograms/sonograms, you name it - I think I have had it. I am going to the largest breast cancer center on the East Coast. I trust them.

There are doctors who I don't trust, and who leave me with a bad taste in my mouth. How they got their license is beyond my understanding. And trust me, I will never set foot in Johns Hopkins ever again. Not only for how they treated me as a transman, but how they neglected my sister with her cancer. Enough about that.

Thank you for your love and support. I appreciate it.

Waxnrope,

Talk to your sister NOW. Tell her what is in your heart. Tell her you love her. Tell her your dreams, your hopes, your loves, your losses. Don't wait a second more. Help her to die with dignity. I had to help my sister to die. It was by far the hardest thing on earth I ever did. Everything from writing letters to her 2 young sons who couldn't grasp what cancer is or what it was, to planning her funeral, to talking about the afterlife, to reading to her, to helping her pick tomatoes from a vine I planted for her in a small tub. I have such wonderful memories of her. I also remember holding her head while she was getting sick, her hair loss...it is just heartbreaking. So I know what is going thru your mind. Be with her, and don't be afraid to share your soul with her. She needs it just as much as you do.

SweetCali,

Try eating fruit shakes with real fruit. They are good. Or even ice cream floats. I love those, but they put on the pounds for me because I like whipped cream. If it is fattening I love it. And I'm diabetic, so I have to watch what I eat. There is a website from NIH that is from their nuitritional group. I am not sure of what it is called diet something or another. Try doing a search there, and maybe you can get some ideas.

Hospice is awesome. I know I had a bunch of angels helping out with my sister. They were just the best. Always knowing what to do, when to do it, and how to make everything flow. There were some days that were harder than others, but for the most part, I would recommend hospice to anyone.

Tommi,

Thank you my brother. You always are so kind to me. I just adore you!

PearlsnLace,

Humor always keeps me going. I love to get pms that are like that. The more the merrier. Thank you. I appreciate you thinking of this for me! How sweet of you!

Drew

[waxnrope]

Originally Posted by sweetcali

I will keep you in my thoughts Andrew. Please keep us updated.

I am now dealing strictly with hospice. I love it. I do have one problem though and that is I have lost wayyyyyy too much weight. People have suggested those protein shakes but that is even confusing. LOL Most of what I have looked at deal with weight loss, I can't seem to find one for weight gain. Any suggestions?

sweetcali

sorry, sweetcali, I meant to quote and not thank you inappropriately. I'd like to offer suggestions, but have questions before making assumptions. Is that ok?
Do you have appetite?
how is your energy level?
are you sleeping ok?
are you trying to do the traditional three meals a day?
what confused you about the protein shakes? is it hard to concentrate?

Perhaps I should PM you ... that is how I usually communicate with people here. Is that ok with you?

[waxnrope]

I will be going to Switzerland in about a month ... if all goes well ... to be with the last of my immediate family, my sister. I can only go for a week because it is all the time that I can take off from work.

My sister, Dolores, was diagnosed with an aggressive lung cancer which I learned about the in April, and has lived there, in Switzerland, with her husband for a couple of years. They have good health care there, albeit, slow, and from what I can ascertain, the various specialist do not communicate well with one another. I have been doing the arm chair quarterbacking of her care from afar. I hope that by my going this time I will be able to establish firm contact with at least the oncologist so that I have email communication with her on a fairly regular basis. We have "fired" her primary care doctor, the "professor" who is dismissive and unresponsive.

My sister gets confused about all that is going on: she was having palpitations and her PMD did not think to do a simple EKG. I told her to ask for one, and it turns out that she had a significant irregularity that required medications for the rhythm as well as a blood thinner to prevent clot formation and subsequent stroke. There were complications from this in which I had to intervene/interfere. Thus, we fired the bastard.

I initially planned on going in the fall/September, but she wants me now, during the next cycle of her chemo and when she will begin radiation therapy.

While this does not place me as the usual "caregiver" (her husband is that), I am the one she turns to for help in navigating the tangled webs of western medicine. So, in that fashion, I am a caregiver. If/when her condition worsens, I suspect that I will be there for a longer spell and providing her husband with some respite.

I cannot utter that which lays like a stone in my soul about how I feel about my "big" sister having this cancer. I don't know what to say when she says, "I don't know what to do" ... meaning, about dying. We have started the conversation, as a suggestion by a friend of mine, about a bucket list. We've begun the stories of mom anew (she was a medical "miracle" in that she had 3 separate cancers and lived 3 1/2 years beyond her "six months" prediction) ... and have started the laughter in the telling of such tales.

There is someone, on this site, knowledgeable about cancer research. She has helped me as I am trying to stay one step ahead of the "natural history" of my sister's cancer (if and when the treatment fails). She has been supportive and kind.

As for me, selfishly, I feel at times abandoned and homeless, in an odd sense. I have been writing when I can face it. The pen is my therapist. Metaphors are my life. My new love keeps me from drowning.

Thanks for reading/"listening"

[sweetcali]

Originally Posted by fiercegrrl

carnation instant breakfasts or ensure are both something that can help get calories in you fast and come in a can ready to drink (use a straw if you aren't crazy about the flavor)
milkshakes!
a good granola to snack on even when not so hungry (bear naked is a delicious brand and they even have a high protein version)
and maybe a joint to give you the munchies...

Thank you!!!

Originally Posted by waxnrope

sorry, sweetcali, I meant to quote and not thank you inappropriately. I'd like to offer suggestions, but have questions before making assumptions. Is that ok?
Do you have appetite?
how is your energy level?
are you sleeping ok?
are you trying to do the traditional three meals a day?
what confused you about the protein shakes? is it hard to concentrate?

Perhaps I should PM you ... that is how I usually communicate with people here. Is that ok with you?

Yes I do have an appetite.
My energy levels are really low. I just do not have the stamina I used to have for anything.
Sometimes I sleep ok sometimes I don't.
Yes I do the traditional 3 meals a day.
What confuses me is some say for muscle gain, some say for weight loss, some say just for added protein. etc etc.

Thank you,

sweetcali

[waxnrope]

Originally Posted by sweetcali

Thank you!!!



Yes I do have an appetite.
My energy levels are really low. I just do not have the stamina I used to have for anything.
Sometimes I sleep ok sometimes I don't.
Yes I do the traditional 3 meals a day.
What confuses me is some say for muscle gain, some say for weight loss, some say just for added protein. etc etc.

Thank you,

sweetcali

Thank you for responding, Sweetcali ....

• see if your provider will give you Vitamin B12 injections at least monthly (every 2 weeks is better for a while)

• take Melatonin 100 mg (health food stores) about 1 hour before bedtime to help you sleep
• eat 4-5 small meals/day (or graze all day). Helps digestion and makes sure that you are getting adequate nutrition. If, for example, you have soup and sandwhich for lunch, have 1/2 sand. and soup, then 2 hours later the other half.
• I am confused about your confusion! for muscle gain, eat more protein and lift "hot dog" weights ( 1 or 2 pounders);
• make sure that you do even a little bit of aerobic exercise daily ... among other things, doing so helps mood ...

[sweetcali]

Originally Posted by Oiler41

When my mom was dying with cancer and didn't want to eat, this is what I did as well. I mixed 1/2 ensure, 1/2 instant breakfast and but it in a blender with a banana. It helped keep her up with some protein until she got to the point that she couldn't drink anymore. She opted to not go through chemo and I supported her in that choice. For her, diagnosis to passing was seven weeks and one day. However, it is a fact that she was misdiagnosed nearly six months before the official diagnosis. Early diagnosis is certainly one of the largest keys to beating cancer. I wish everyone, both patients and caregivers, the best with their journey.

Glynn

Thank you oiler. I can talk about misdiagnosis for days. They misdiagnosed me for a very long time. They put me in the automatic menopausal depressed hormonal group. Until I went to the ER for a swollen elbow and ended up leaving there knowing I had a mass in my lung. So yup I get the misdiagnoses game.

Originally Posted by SuperFemme

When I can't eat I just keep trying stuff until something is tolerable.

No worries SweetCali, I will be there soon to fatten you up! I have my handy-dandy recipes for blondes booklet and a lot of will power to make you feel better.

I will also show you how to make ensure tolerable. A girl has to add things sometimes.

YAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I miss you bubbledoodles!!!

Originally Posted by waxnrope

Thank you for responding, Sweetcali ....

• see if your provider will give you Vitamin B12 injections at least monthly (every 2 weeks is better for a while)

• take Melatonin 100 mg (health food stores) about 1 hour before bedtime to help you sleep
• eat 4-5 small meals/day (or graze all day). Helps digestion and makes sure that you are getting adequate nutrition. If, for example, you have soup and sandwhich for lunch, have 1/2 sand. and soup, then 2 hours later the other half.
• I am confused about your confusion! for muscle gain, eat more protein and lift "hot dog" weights ( 1 or 2 pounders);
• make sure that you do even a little bit of aerobic exercise daily ... among other things, doing so helps mood ...

Thank you waxnrope I really appreciate it. When I was going through the second Tier Chemo they gave me B12 shots. I take b12 vitamins now; maybe I will ask them if I can get a shot.

sweetcali

[SuperFemme]

Originally Posted by Andrew, Jr.

I go in the hospital next week for my surgery. Then I have to wait for the results. I think that is the hardest part. The surgeon told me that the results will be back by the time she is finishing up. So I will know when I wake up. Then in 3 days I will know the exact kind of cancer. She is treating me as if I do have cancer. With the history of cancer in my family, and having the symptoms I have, she is pretty sure it is cancer. The grade and kind is up for debate.

I am feeling as if it isn't my time yet. I have alot of living to do yet.

Andrew

If I were you I'd make sure to get a second opinion Andrew.

It is kind of unethical for a doctor to tell you that you have cancer before the biopsy results are in, don't you think? It is unconscionable to have you this stressed out withOUT results!

That would worry me a LOT! I know everyone is praying for you to have a good outcome.

We have to advocate for ourselves. I know that I always get a second opinion because one just never knows what a new set of eyes may see.

If you don't like a doctor then don't go back. If a medical professional is cavalier with you? Step up to the plate for yourself! At the end of the day we are the only ones that know our bodies and what is really best.

[Tommi]

Andrew, I wanted to say thanks for this thread. Thanks for a place we can come to and talk among those who understand this journey

And for those taking care of us, a place to seek and rest among friends. Any time of the day or night call out, someone is near by.

sweetcali,
My Mom loved peanut butter N jelly sandwiches, chased with coffee flavored milk shakes. They now have frozen,I think it's Smucker's Pnt btr and grape jelly..Wishing you well this Sat. AM from So Cal. If you were closer I'd bring you some stuffed French Toast from Mimi's.

"and maybe fiercegrrl could bring you a joint to give you the munchies".

Andrew, ride hard and be prepared. I know you have been here before dear friend.. Candles of hope for you and you are in my prayers....Tommi

Originally Posted by SuperFemme

If I were you I'd make sure to get a second opinion Andrew.. ...We have to advocate for ourselves. I know that I always get a second opinion because one just never knows what a new set of eyes may see. If you don't like a doctor then don't go back. If a medical professional is cavalier with you? Step up to the plate for yourself! At the end of the day we are the only ones that know our bodies and what is really best.

Great advice SuperFemme,
I canceled surgery a day before I was to scheduled for a total radical hyster for uterine cancer. I had done the autologinous blood transfusions for 6 weeks at the Red Cross and my blood was waiting at the hospital for me.

I asked the Doc if she had the results from my CT Scan, because my one kidney looked enlarged on the ultrasound..She said no, but if I see anything when I'm in there, we'll take care of it!!!there is always a general surgeon in the OR. STOP>>>I asked if maybe an MRI should be done prior to surgery. She said no, we can "always" remove your kidney...ALWAYS...cause I have 2?

Went to a Gyn/Onchologist, who did total workup on me, including the MRI, bone scan, liver scan, lung scan, etc , prior to OR..and saw I had some lymph nodes that were swollen, and 16 had to come out.BUT all was known, ahead of time.