update - on wbr & how I'm feeling

Pam P · 04-13-2011, 04:11 PM

I just re-read all your messages on my initial brain mets post. I really needed to read all the support & encouragement again and it did help.

Things are not well, but hopefully will show imrprovement soon.

My muscles are so weak I still can't get up out of a chair by myself so I still need a "babysitter" can't be home alone. The only place I can stand up by myself is from the side of my bed. I've lost so much weight - can't get an appetite back ( the decadron was supposed to make me eat but it sure didn't do that) I'm weaning off it now - by end of next week that will be done. In just the last 2 days or so I feel like I have a bit more energy but it's so slight - My last wbr was 3/30 so it's been 2 weeks already. The pneumonia at the end made it all worse, but I'm pretty sure that's gone now. I see the onc. tomorrow. Hopefully he'll think I'm strong enough to restart halaven. I only got that 1st dose of it right before I started rads, the end of April. I'm so nervous about the cancer not having any chemo for so long - it's not controlled at all right now. Then I won't even know for awhile if the halaven will work for me - or if the wbr is working.

I'm mentally & emotionally panicking, physically struggling, basically a mess.
One good thing I have in-home pt this week to help get me started on some strengthening exercises mainly for my legs and arms. Hope I can recover enough be be independent.

Sorry this post is such a downer - it's honestly where i am right now - also very scared - I just needed to check in and talk to my sisters. Love you all. Pam

Sheila · 04-13-2011, 04:33 PM

Pam
Sorry you are struggling right now..your plate has been overloaded for awhile....maybe some of the feeling drained is coming off the Decadron...the PT should help you regain the strength, and I was off the Halaven for 3 treatments due to counts and my ICU stint. Got it again yesterday. The good news is it works very rapidly...the girls at San Antonio will tell you that. It has pretty much resolved all internal nodes on me, just trying to keep the neck controlled. I know it will work for you Pam...stay strong, stay focused and know that we are all here for you. It is so hard when you get down, but we will pull you up....Lots of prayers and healing thoughts coming your way Pam....better days are ahead...give yourself time to bounce back.
Much Love & strength to you

Becky · 04-13-2011, 04:38 PM

Oh darling girl, things will improve. You have been through so much - 2 major surgeries, wbr, decadron. Make sure you eat nourishing food that you can add extra calories to easily. There is whole milk yogurt (hard to find but in grocery stores there is Yo'Baby for babies who have to have whole milk). Add butter to vegetables and gravy to meat. Dense foods are what you want. Eat constantly but small and tolerable things. 1/2 a banana (more calories than apples etc). Use Boost or Ensure as your beverage. A small milkshake or smoothie. Whole milk in general - no fat free anything. Fat has alot of calories so think of creative ways to use mayo, butter, olive/canola oil. Eat cream based soups - cream of broccoli or asparagus. Now is not the time to necessarily eat right - eat calorie dense. Cheese - a small bite of something every 1/2 hour. Snack, snack snack. Nuts are also energy dense as is peanut butter (Peanut butter and jelly on a couple of crackers or cream cheese on crackers or peanut butter on apple slices with raisins). Unless you are dealing with nausea, force yourself to build up your strength. This may be why you are somewhat weak. Can someone help you do some toning exercises to build up your muscles? Some physical therapy may help and the exercise involved might also help your appetite.

I am thinking about you constantly and I know you can get yourself on a better foot soon.

Love from me to you.

Becky · 04-13-2011, 04:42 PM

I also hate to suggest this but have you considered medical marijuana? It may really help the appetite out. Please don't take this suggestion poorly - I am just thinking aloud and want to bring up the thought.

Jackie07 · 04-13-2011, 05:09 PM

Besides its effect on improving appetite, medical marijuana has been reported to be effective in stopping metastasis:

Breast cancer
According to a 2007 study at the California Pacific Medical Center Research Institute, cannabidiol (CBD) may stop breast cancer from spreading throughout the body.[59] These researchers believe their discovery may provide a non-toxic alternative to chemotherapy while achieving the same results minus the painful and unpleasant side effects. The research team says that CBD works by blocking the activity of a gene called Id-1, which is believed to be responsible for a process called metastasis, which is the aggressive spread of cancer cells away from the original tumor site.[59]
http://en.wikipedia.org/wiki/Medical_cannabis

A 2010 report on its effects on the reduction of breast cancer cell proliferation, invasion, and metastasis:

http://www.ncbi.nlm.nih.gov/pubmed/20859676

LoisLane · 04-13-2011, 05:47 PM

Dear Pam Just read your post and I feel so sorry for all you are going through right now. I am sending all my good thoughts and prayers to you to get better soon, resume treatment and get back on that road to recovery. Bless you Pam be assured all of us are sending our prayers and warm hugs to you. Lois

adelay · 04-13-2011, 06:56 PM

Oh Pam, I hate to hear you are still struggling so. Sending lots of prayers your way...happy spring, may the sunshine brighten your days~

Trish · 04-13-2011, 11:37 PM

Difficult days indeed but you have had a lot that you need to recover from and I'm sure it takes time. May this phase pass and you regain your strength. I'm glad you posted-it is great to hear from you when you are able.
Trish

Mary L · 04-14-2011, 04:06 AM

Pam, I am sorry things are still so hard for you. Becky really gave you some good advice. I too agree that the weakness is probably from not eating and I do know it is so hard to eat when you are not hungry. Try some of her suggestions. I am happy that you are going to start PT. You are in my prayers. Mary L

Kim in DC · 04-14-2011, 04:48 AM

Hang in there Pam! We are all praying for you. Make a list and start thinking of all the blessing in your life. Start with the fact that you found this board!

Lori R · 04-14-2011, 05:49 AM

Pam,
Sometimes it is darkest just before dawn. It appears you are on the cusp of a major breakthrough, so keep the faith!!!

Look at all you have accomplished in an incredibly brief time, 2 surgeries ..check, WBR...check, Decadron (evil, evil stuff)....you are done with that..check, Pneumonia....check...done with that.

Although small, I hope you find encouragement with even the smallest improvement. You definately need to keep your weight up. When I was first diagnosed I lost a lot of weight (due to the mental shock) and a nutritionist recommend viewing food as "medicine", since there is no appetite to trigger you to eat, she forced me to set an alarm to remind me to eat every 2-3 hours. I would eat high caolorie but healthy combos of protein + carbo. Think an apple with peanut butter crackers, cheese or nuts + a veggie. It was amazing when the alarm went off...there were times where I would look at the food and wonder how in the world I was going to choke it down. But the small quantities helped.

Just think of every bite of healthy, body building food as one more bite against the cancer!!!

Pam...I just know that that worst is behind you and with continued TLC you will be up and around. Independent as always.

Lots of Love.....Lori

04-14-2011, 06:30 AM

Dear Pam -
StephN here - still in Indonesia - but had to look in a see how everyone is.

I always mention over and over that Decadron is MUSCLE WASTING - no matter what you eat. My thigh muscles were really weakened when I had to take it before and after my Gamma Knife. I had a healthy appetite, but could feel myself having a harder time with my stairs as the days went by. So, even a person who is not coming from as weakened a state can have marked difficulty from just that drug.

Once you have been off it for 10 or so days you will notice your strength returning.

Also, there is a type of Ensure that is for muscle rebuilding. That may also give you a bit of a lift.

You have made it this far, and the road will start to flatten out soon. We all send love and best wishes for peace of mind and renewed strength.

ammebarb · 04-14-2011, 07:27 AM

No suggestions, Pam, just a message loaded with love and good wishes. I think about you a lot and am keeping you in my prayers. I hope you begin to feel better soon and can restart the Halaven. Gentle hugs to you, dear Pam.

Barb A.

jml · 04-14-2011, 08:37 AM

Oh Pam!
I'm so glad to see you here on the board, but so heartsick that you're not feeling well. Hang on tight & hang in there.
I remember when I was having such a hard time last summer, I felt exactly the same way...I didn't know how it would be physcially possible to bounce back. And that was so scarey. I remember being so weak that changing the toilet paper roll was a task that brought me to tears, and not even having the energy to laugh or smile at something I saw on TV.
Of course you know intellectually what you should do, like eat & try to sit up, but sometimes even that is too much.
I remember my mom would go and buy me a big 500 calorie smoothie, because that's all I could tolerate, but sometimes it would take me 2 days to finish even just that. Be patient with yourself, all you can do is try. Your body needs the rest in order to heal just as much as it needs nourishment and exercise.
Let everyone around you do as much as they can to help you, like bringing you small bites every couple of hours. A soft scrambled egg and rice always seemed to work for me. High caloric, heavy foods were too much for me, so anything at all that I could take in was a victory. And any bit of nourishment that I was able to take in made a difference.
You are strong in spirit, your body is resilient and wise,
health and healing are just around the corner.
Sending you love and hugs.

Keep the Faith~

Jessica

ElaineM · 04-14-2011, 10:47 AM

You have had alot on your plate for a long time Pam. Be kind to yourself. Be good to yourself and take one step at a time and one day at a time.
If you don't feel like preparing food yourself ask someone to help you. Someone might be able to put some milk or yoghurt in a blender with some fruit and a little protein powder and make a delicious drink for you. Having things around to snack on is a great idea. I boil 3-4 eggs and keep them in the refrigerator. I can take one out for a quick snack with a cup of tea. Have a bag of those baby carrots or celery pieces around and eat a few pieces for a quick snack. Nuts are a great snack. A handful in a bowl next to you for whenever you can eat a few would be good. I keep a bag of salt free popcorn from the health food store around for a handful once in awhile. In fact mixing the popcorn with the nuts is delicious. Juices are great snacks. I like V8 Fusion juices. Little cups of applesauce make good snacks. I like to have a cup of yoghurt once in awhile. Little boxes of raisins make good snacks. Small chunks of cheese are good to snack on too. Instant white miso soup is very comforting.
I hope the doctor will give you some Halaven. If you are not well enough for a full dose ask for a half a dose. A half a dose is better than none.
I have my fingers crossed for you. We are all cheering for you Pam, so hang in there and keep going. It doesn't matter if you are moving slowly as long as you are moving. One step at time does the trick. Hugs !!!!!!

Paty · 04-14-2011, 11:07 AM

Pam,

Thinking of you and sending you hugs. I have been feeling terribly tired too and with some other symptoms. I have a doctor's appointment today. I can immagine your fears dear, I have felt the same, but let's grab God's hand very strongly.

All my love....

Paty

ElaineM · 04-14-2011, 11:19 AM

I forgot to mention that a bowl of cereal with milk, almond milk, soymilk or rice dream makes a good, nourishing snack too, especially if you eat it with a banana or some other easy to prepare fruit and nuts.
Occassionally I get those Gerber second foods with the already pureed fruit or sweet potatoes to mix in my smoothies. No work for something that tastes good !!!!!

BonnieR · 04-14-2011, 12:02 PM

Pam, you are entitled to feel exactly the way you do, you have so much going on. Physically and emotionally draining you. I can only remind you that many of these things are temporary even though you feel in an abyss right now. I was recently looking back over my journal entries from the height(depth) of my bad days where I was in such pain and despair.
I think some medications add to depression too
It is hard to feel so weak and malnourished but still not have an appetite. The medical marijuana was not a bad suggestion. And, as others said, just try to eat tiny frequent amounts of high fat and protein foods. Milk shakes, cheese, Ensure, etc.
Enlist all the help you can. When people ask how they can help you, give them something to do.
But mostly, you want to feel less powerless. And you will. I always end my posts with "keep the faith" because I believe that mantra. Things are not always going to be as bad as they feel today.
Love.

schoolteacher · 04-14-2011, 01:05 PM

Pam,

I am glad to hear from you. Was thinking of you yesterday. Hope you feel better today.

Amelia

Mary Anne in TX · 04-14-2011, 01:42 PM

Pam, though you feel a mess to you, your straight talk and honesty is nothing but powerful and amazing to me. It seems to me that power comes in so many forms. I always think of you as one of ou warrior iron maidens. I find your willingness to say it like it is to be not only powerful, but so very much a gift to all of us. You have my prayers for better days with joy ahead. ma