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Location: Aboard the Enterprise, watching NCIS reruns!
Posts: 95,620
It's good to hear from you, but I'm so sorry things have been no painful. Thank you so much for taking the time to give us an update. It sounds like your whole family is being very supportive.
((hugs))
__________________ Kathy Wrose
I am frequently a victim of resistentialism (seemingly spiteful behavior manifested by inanimate objects).
Samantha, a friend of mine has a sister in law who is a nutritionist for people who have cancer and are going through chemo. Maybe your Dr. would you refer you to someone like that, and you could maybe feel a bit better by eating differently? Just a suggestion, stay strong, I think of you often. Remember, I am close, if you need anything, just PM me, I will be there! Or, if you just want a visitor!
Sammie, I don't know you very well and have only "got to know you" because we have a lot of the same friends. I don't know you pre-cancer (my loss, I believe) and wouldn't begin to presume that I know you well at all. But your description of losing your hair brought tears to my eyes. You are amazing and strong and beautiful.
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Proud Mom to an 9YO Level 6 gymnast
Samantha! Thank you for posting. I have been thinking of you as I knew you had already had a chemo treatment. I am sorry that it is so hard. Please know that I am keeping you in my thoughts and holding your cyber hand. Try to stay strong and endure.
Julie
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Judging a person does not define who they are. It defines who you are.
Good morning Samantha. I have been following this thread and have to say I have great admiration for you and your loving family. So glad you are posting here. It not only keeps us updated on your progress but I am convinced "journaling" is good for your soul and emotional well-being. Some day, when this is over, you can review this thread and think how far you have come. Hope this is finding you feeling better. Take care. Rose
Good morning Samantha. I have been following this thread and have to say I have great admiration for you and your loving family. So glad you are posting here. It not only keeps us updated on your progress but I am convinced "journaling" is good for your soul and emotional well-being. Some day, when this is over, you can review this thread and think how far you have come. Hope this is finding you feeling better. Take care. Rose
I haven't posted in awhile because somehow I lost my subscription to this thread, sorry!
I'm sorry to hear you are having such a hard time with chemo. They gave me IV drugs for nausea before my treatments and I did ok during the first 2 months but the last half wasn't so good. I finally ended up on Amend which was super expensive but did the trick.
Do you meditate? I have a CD that I used to listen to during treatments that I'd be willing to send you if you're interested.
Hang in there......you can do this and you have the power of friends and family lifting you up when you aren't feeling so strong.
I just thought of a tip to share with you. I received the dose-dense chemo and shots of Neulasta every other week too. The shots burned terribly until they started giving them to me in the stomach, then I couldn't even feel them! It freaked me out at first but it was really painless.
Thank you everyone for the kind words of encouragement and the tips from those who have been through this. Today is not a good day as my white count is going down and I should hit bottom by tomorrow night. I m exhausted and I am not doing anything. Mouth sores are back as before and thrush is beginning. But at least this round I kind of know what to expect. They did say that I would experience the same bad things probably on the same days as the first round. So far it is right on.
I miss my kids and grandkids so much. They have all returned to their home states now. I just miss them so very much. I know they are coming back in a few months at various times, but it seems like forever.
Joyce, I am a bit worried about the second half of treatment too. They change the kind of chemo and the side affects are what I already have – neuropathy and bone and muscle pain. I asked what to do if the neuropathy comes back and was told to stop immediately as the pain would likely be permanent. Not good. I take a ton of Neurontin now as it is. I guess I should just wait and see.
I will try and avoid the trip to the ER this time. They said that the Neulasta makes my body produce while cells faster. But one area where it is made is the lower back. Because I had back surgery there 2 years ago, and because of the lupus, my lower back becomes an area of attack. So they said to start taking pain meds tonight and continue through Thursday and that may keep me at home at least.
I am also keeping a written chemo journal. It helps to go back and read what happened and also to refresh my “chemo” brain when I see the DR.
Thank you everyone for the support. Cyber support is as important to me any other. Especially from women I have never met but who care.
Oh, I am actually getting used to looking at my bald head. No dents or divots. It actually feels nice too. What am I saying – I have no hair!!!!
Hugs to all of you.
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Sammie # 7651
When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe
Hey Sammie, thinking about you and wondering, btw, what is the name of the pretty kitty in your avatar? Looking forward to your next post, hope you will be through the worst of this round soon. Hugs,
Hey Sammie, thinking about you and wondering, btw, what is the name of the pretty kitty in your avatar? Looking forward to your next post, hope you will be through the worst of this round soon. Hugs,
Hi Laurie,
My kitty's name is Bailey. She is such a comfort to me - when she chooses of course. She is my alarm clock in the morning whether I want to get up early or not. Same time every day. She wakes me up and then goes back to bed. Cats - go figure.
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Sammie # 7651
When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe
Bailey sounds like a joker!! She is so pretty. Cats have staff as you well know!!
From 1992 til 2003 I had a beautiful long hair calico who was such a comfort - she died of lung cancer during hurricane isabell - but she would know where I needed her - on my head for headache, on my tummy for stomach ache - we called her "nurse kitty" when she was taking care of us. When she became ill, she purred for herself. I knew it was the end for her when she no longer cuddled or wanted to be held. Enjoy them when you can, they are gone so quickly from us.
The single most important thing I did during treatment was try to stay positive. It was hard as heck some days but I believe that a positive attitude really makes all the difference (and there have been studies about it). I also prayed during chemo and radiation that the treatment would kill any cancer but not permanently harm any healthy tissue. Tell yourself how strong you are!
How many more treatments do you have? Do you know what your chemo cocktail is?
At first I didn't lose all my hair, just most of it on top so I tried to wear hats and left my wisps of hair hanging down in the back. I look back now and realize it didn't look any better than being completely bald (probably worse! LOL! I finally had DH shave it and eventually lost ALL hair EVERYWHERE. The plus side is that my skin never looked better! Just remember, it's only temporary.
Sammy, Your Bailey looks just like my Onyx! They could be twins! So, what are you doing to pass the time? Have you had energy to do anything? If so, I would love to come and stamp with you if you are up to it! Just let me know!
Today is a really bad day. I had my 3rd round of chemo on Wed and I feel really down, tired and have a very bad sore throat. I felt great on Tuesday. This is the usual way it had been going with my dose-dense chemo. I get a shot of Neulasta the day after chemo and that does a number on me. It builds the white Absolute Nuetrophil count. So in a week I will go and get my blood taken. They always call that night to tell me that my white counts are really low and to stay away from everyone and everyplace. So I do.
It begins to rebuild about 2 days after that and I start to feel like I have a little bit of energy. I actually feel pretty good 2 days before the next round of chemo and I forget how crappy I felt a few days before.
I found out yesterday that I probably need knee surgery because there are tears. Man. I am not over weight or anything that would have caused more pressure. I just tore something in it right before the breast cancer came up. So we have put the knee surgery on hold until the cancer treatment is over. It twists on me and there have been times I felt like I would fall. They first suggested crutches. I can’t do that because of my mastectomy and also because I think I am getting too old for them. So I am supposed to use a cane. The knee is just so very painful.
The problem with getting the Neutrophil shot is that is causes a lot of swelling in sensitive areas….That would be my back and knee. OK…..now I am really starting to feel sorry for myself and I hate that. I know that others have gone through so much more.
I am weak and tired. I feel lazy but I can’t do anything. It’s 5 PM and I am in my PJs. I don’t feel like getting dressed on days I don’t have to go to the DR. I sleep in one pair and have other clean ones to wear for the day. I am just more comfortable.
The expander in my chest is also painful. When I read the literature before the mastectomy, it said that there would only be minor pain each time they put water in it to stretch the muscle and skin. But it’s a lot more painful than that. I have had mine slightly overfilled to stretch to the maximum. Not my choice but the DR’s choice. I have talked to a lot of people who all know someone who had this done and they thought it was really painful too. A few actually had it removed. I have to wait until chemo is over and then he will take it out and put an implant in. I can’t lay down on my right side because it sends bursts of sharp pain up through my neck. Not good.
Sp hopefully I can get through the next 5 rounds and then have reconstruction surgery at the end of April. By summer it will be all over except for my hair growing back.
Thank you again Karen for the gorgeous card.
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Sammie # 7651
When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe
Samantha, I think I'm having sympathy pity pangs for you! I'm feeling a little blue today, for no obvious reason. It started last night when I was watching E.R. There was an issue on the program that mad me very sad and I started tearing up then. This morning, I talked to my baby sister in San Diego who just had her second surgery to remove some dysplasia cells, but also was just told there are more in a different spot and it will require constant vigilance to stay on top of it. She got this due to HPV... too bad the vaccine was available 30 years ago.
I was thinking about your knee problem. Have you considered an elastic brace? I have one with metal supports on the sides and I thought something like that would help with the twisting.
Take care, dearie! We're all pullin' for ya!
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RT - In-house Bunny Chaser
"It takes a lot of money to look this cheap."- Dolly Parton
Samantha, I think I'm having sympathy pity pangs for you! I'm feeling a little blue today, for no obvious reason. It started last night when I was watching E.R. There was an issue on the program that mad me very sad and I started tearing up then. This morning, I talked to my baby sister in San Diego who just had her second surgery to remove some dysplasia cells, but also was just told there are more in a different spot and it will require constant vigilance to stay on top of it. She got this due to HPV... too bad the vaccine was available 30 years ago.
I was thinking about your knee problem. Have you considered an elastic brace? I have one with metal supports on the sides and I thought something like that would help with the twisting.
Take care, dearie! We're all pullin' for ya!
Yes, I am going to look into a brace for my knee. I had forgotten that. I have to wait until I feel better(about 8-9 days) and then look for one. We did talk about it in the office but got side tracked with all the crap going on. Can I just go and buy one as you described or do I need an RX? I feel dumb that I didn't even ask. There was just so much going on. I had to go alone as my DH had a small bowel obstruction 2 days before and he is the one who keeps things on track and asks a ton of questions.
I guess I am just depressed today and feel crappy. I am not a person that cries easy, but I could today if I wanted to.
I hope everything will work out well for your sister. I think sometimes we (I) get so bogged down with our own stuff, we forget of all those who are ill and suffering too.
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Sammie # 7651
When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe
I believe crying lets out toxins and I never try to hold back my tears - cry, dear Sammie, cry. It is God's "release" button!! Sometimes when I need a good cry I read Guideposts or watch some sappy movie so that I can cry for someone else instead of myself. I have major depressive disorder and sometimes pajamas are the best RX for that!! Always eager to read your posts and send prayers, good wishes and cyber hugs. Take good care.
Please try not to feel emotionally bad regarding anythign you do that makes the days easier, whether it be crying, staying in your PJs or watching Jerry Springer. Do what feels right at the moment.
Wish I could take some of that pain away from you.
Maybe you should keep a DR journal so when things do pile up at office appointments things don't slip through the cracks. I do that with my high risk pregnancy. Just too many thngs to try and remember when emotions run hi.
And I have to say you might feel alone at your pity party but believe me you have a house full of virtual guests. So where's the pinata? I heard there was going to be punch and pie
Location: Ohio, trying to get Scarlet out of the dryer
Posts: 9,208
Just came across this thread and i wanted to send you a
((((((HUGE HUG))))))))
I saw we all show Sammie support and pick a day during her next round of chemo and stay in our PJ's all day. When my sister who was a beautiful dresser (would never leave the house without jewelry etc )was feeling bad and couldn't get out of her nightgown the kids and I would stay in our pj's too and have a pj party. When life gives you lemons....
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Barbara SU! Demo with a Blog
Procrastinators of the world unite... tomorrow!
Just came across this thread and i wanted to send you a
((((((HUGE HUG))))))))
I saw we all show Sammie support and pick a day during her next round of chemo and stay in our PJ's all day. When my sister who was a beautiful dresser (would never leave the house without jewelry etc )was feeling bad and couldn't get out of her nightgown the kids and I would stay in our pj's too and have a pj party. When life gives you lemons....
I will make the supreme sacrifice and stay in my pjs everyday, Sammie. See what a good friend I can be? LOL
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RT - In-house Bunny Chaser
"It takes a lot of money to look this cheap."- Dolly Parton
Finally I had my 4th and last chemo of the A & C and then in 2 weeks I begin a different chemo (Taxol) for 4 rounds. I feel really down, tired and have all sorts of side effects. I usually have 2 some what decent days right before I get the next round although I am beginning to feel the cumulative affect now. This is the usual way it had been going with my dose-dense chemo.
I get a shot of Neulasta 24 hours after chemo and that does a number on me. It makes the bones build the white cells so I can have the dose-dense therapy (every 2 weeks instead of 3). Hence the bone pain. Seven days after chemo I have my blood taken to check on the white count. The nurse always calls that night to tell me that my white counts are really low and not to eat any fresh fruit or vegetables, to stay away from everyone and stay home - blah blah blah... So I do. It begins to rebuild about 2 days later and I start to feel like I have a little bit of energy. .
Yesterday I saw the neuro ophthalmologist because one of my eye lids droops. Another story in itself. But there is probably a lesion, tumor or something unknown affecting the Sympathetic nerve that goes from the brain, down to the heart, across the lungs and one of its split nerves goes back to the eye. We need a MRI to find where the problem is. But the expander in my chest has metal so we can’t do it. What do I do? The DR says I can’t have the expander taken out because my white count is too low and it would be dangerous. So I will see the neuro-eye DR on Monday with a new kind of drop and then more tests. I’ll have to see how important this MRI would be. The thought of a tumor kind of scares me. I guess I will have to wait 2 more months until I am done. My left eye is half shut and the pupil doesn’t respond to anything.
This is the toughest thing I have ever gone through. I am thinking I made a bad decision and maybe should have had a bilateral mastectomy. The chance of cancer in the other breast is not uncommon. It is not a metastasis but there are cells that are just ready to mutate to cancer. The expander in my chest is a pain in the butt. Had I known then what I do now I wouldn’t have had it put in at surgery time. It’s used to stretch the skin and muscle so reconstruction can be done.
Being sick is such a bummer to say the least. I have so many DR appt's that are so tiresome. Am I starting to complain? I guess I am. I just don’t know what to do at times trying to make decisions. I made an app’t with my primary card DR who I have gone to for over 20 years when he was just a kid. But he maybe can help me decide about having another mastectomy, then the MRIs, maybe surgery on the nerve somewhere between the brain-heart-lung-eye to take out whatever is there, then knee surgery and then reconstruction. OH man.
Thanks for the cards and really nice support.
Good news because my DD and 4 y/o GD are coming back for a week in late FEB. I can’t wait.
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Sammie # 7651
When you get in a tight place and everything goes against you, till it seems as though you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn. -- Harriet Beecher Stowe
Hi Sammie!
Glad to hear that you are halfway done. Horrified about everything else, especially your eye. That is scary about the eye. I am so scared for you. Hang in there.
Hugs,
Sophie
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Faites l'amour, pas la guerre, ...ou alors, faites les deux : mariez vous !
Cards for troops and kids
Location: Aboard the Enterprise, watching NCIS reruns!
Posts: 95,620
HEY! You're entitled to complain whenever you want.
I'm glad you are usually upbeat and positive, despite everything - it makes me feel hope for you. We always read how a positive attitude is so important.
So come here to rejoice, vent, complain, whatever. In your PJs.
((hugs))
__________________ Kathy Wrose
I am frequently a victim of resistentialism (seemingly spiteful behavior manifested by inanimate objects).
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