Starting Chemo June 2014
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Good evening ladies. I just need to vent just a little bit. Is there anyone else here that feels like your family just doesn't get it? Tomorrow will be one week since my last chemo and I'm so sick of being asked if I'm feeling better. I'm still having some pretty bad body aches,neuropathy and the fatigue is still there. I still have radiation to go and they act like I'm just suppose to be back to my old self. I don't know if I will ever be back to the way I was before.
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Dixie!
I understand! I had my last chemo yesterday. My mother and Aunt were jumping around all over the place and acting like they had been doing coke lines in the bathroom or something! I was happy, but they were nuts!
When we left all they could talk about was how it was all over and I'd feel so much better. I tried reminding them that I still had a miserable weekend to get through and at least two weeks before I'd really start feeling better. I told them I knew people that didn't feel lime themselves for months. Even my oncologist tried cautioning them that the transition at the end of chemo could be very hard because people tend to think "done with chemo" is synonymous with "back to normal." Nothing was working.
I still have surgery in November for reconstruction and I'm looking at going back to work for the new year or end of January. I think right now that is weighing more heavily on me than chemo did because I had no choice in the chemo...I have a choice about work.
I hate to lie to my family, but I'm thinking about OVERPLAYING my side effects for a while just to keep them off my back...especially after reading your post. I'll also keep reminding them that some of this stuff (neuropathy, fatigue) is cumulative and I am beat!
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Dixie and Radical, I have the same situation here. Of course, I am so happy that I am done with chemo, at least for now, and i hope forever, but I am still feeling the SEs. I feel that my husband (who has been very very helpful and supportive) is running short on patience now, and wants to get back to living/enjoying life as before, but I am really not yet up for it.
I, too, have dr visits, port removal, and reconstruction work ahead. I get a headache from my wig, and I look worse than ever without eyelashes, scarce eyebrows, and miserable skin tone. My eyes tear and nose runs. It's so hard to be celebratory when we still feel 'feh', but I hope we will be up for it SOON!!
Hugs to you from NYC!
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congrats Radical!
Islandmama - good luck tomorrow. Sending positive vibes for good blood counts!
Dixie...I understand. I actually have some friends and family who expect me to be fine all the time while I'm on chemo and although I'm still cooking meals, grocery shopping, attending PAC meetings, taking kids to hockey, preschool, etc....I'm suffering in silence with exhaustion, body aches, etc. I have people that don't understand when I don't want to have a play date, no energy to go out tonight, etc. I can only imagine when chemo is done how everyone will just expect me to bounce back immediately. I read somewhere that it will take you the same amount of time as treatment for recovery...ex. 6 months of treatment = 6 months recovery. We will just have to tell them that...it takes months to fully recover from cancer treatment, etc. Hugs!
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VerukaNY - I'm told the SE's are cumulative. I know they are from the same family and your bone pain is a known SE. My vision has also been trashed during my treatment. It now takes me over 2 weeks to start to feel like I'm coming out of the chemo fog after treatment. It really beats me up. HOWEVER, my last big dose of TCH is this coming Monday. I CAN'T wait to get this part of the treatment over!
I'm reading that a lot of us are starting to transition from chemo to radiation - sending all good thoughts and hugs to everyone! I feel like we've all been in a war fighting from the trenches even though we haven't met!
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Thank you hikingandhorses! Ugh...just had ddTaxol #3 on Tuesday and am waiting for the bone aches to come....although last time it was not as bad as the first time. But my lymph nodes/neck and shoulders are tender....eyesight also terrible and gooey...and lovely neuropathy in fingers and toes/whole sole of foot! Just one more after this, so it's just a function of time....i can get through this!!
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thanks Canuck
They must be ok because I haven't received a phone call telling me to redraw!
I've tolerated chemo so far really well. My onc is thrilled and so are my friends and family. They don't believe how I've managed to pretty much carry on as usual.
However, I have times where I just want to do nothing but sleep in or relax and I feel like I get some flack for it from my DH. Don't get me wrong he is supportive and all that crap, but he just doesn't get it. Here's an example that will make him look like a total douche bag but please know that isn't the case!
Tuesday I was tired. He didn't have to work until 1030 but wanted to go early so he could work out. I asked if he could get up with our son and give him breakfast because I want to stay in bed because I'm tired. He says, why are you tired?!
I friggin lost it! I told him I don't complain about much and even though I feel like I'm strong and I can handle lots of things I still don't deserve it. He just can't relate. I told him he doesn't get it nor do I expect him to understand completely. But when I say I'm tired or sore or cranky he better just accept it! Enough said! Needless to say he got up.
Sorry for the rant just feeling a little frustrated this week
but on a positive note 8 more weekly Taxol's after today! Woohoo!0 -
islandmama...no, he's not a douche bag, but that's a great example of how most dh' s forget how much women suffer through to keep a family going!
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hiking-so glad Monday is your last TCH! Ya wahooo!
Island mama -no he's not a douche but he can't get it! No one can till they walk in these shoes! My DH has started coming home later and later from work at night because he is so tired of looking at me being sick! He's not a douche either BUT he doesn't get it. It would be nice for him to just sit beside me and try to cheer me up.
I don't know about anyone else but I have had a few days where I have had so much anger, rage really I could just slap somebody and I don't know why. I am just tired and so ready to feel better. After all this I may need a shrink!
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IslandMama, - You are amazing, and have made your family believe that you can do more than you can/should. You have to speak up, as you did on Tuesday morning.
My Mom was a very wise lady. She didn't like seeing me do more than 'my fair share' of family work (for example, when it came to always hosting Thanksgiving and other large family celebrations, etc ). She would tell me 'if you do it, they will let you'. How right she was! Everyone came to expect me to do it all! (On another note, she passed away one month shy of her 99th birthday, after surviving a cancer in her mouth when she was 12, and breast cancer at 68.) So remember, - if you do it all, - 'they will let you'.
Be good to yourself, respect your needs, - especially NOW!
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I think the misconception comes because we all do the best we can and function and get shit done and take care of kids and work...until the wall hits and a break is in order. People get the idea that we are fine. We rocked this - I think you are all superwoman. And Islandmama, d-bag! You crack me up, I haven't heard that in a long time, might have to re-add to my vocabulary
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Islandmama, my DH is pretty similar. He tells everyone how my chemo is easy on me and I'm fine. Part of it is they don't want to accept the love of their life is fighting for their life! It's frustrating, but yeah, he let's me do everything unless I ask for help. Good point anotherNYCgirl!
So...I thought I was doing pretty good until I saw my oncologist. She said my hemoglobin is very low and offered me a blood transfusion. I said no thanks! She said it's at 88 but if it gets to 70-80 range we will have to do it. I really don't want that!! That pretty much ruined my day since I thought I was doing so great and it was a major reality check. Anyways, chemo is on for tomorrow, ugh..,treatment #4 (of 12).
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NYC girl,
My mom always said the exact same thing...if you do it, they will let you. I never listened but should have. My whole life would be easier!
Agent 99, I picked up a shrink before starting chemo b/c I figured I'd need someone to talk to....not a good fit for me. I find I even put on a happy face for the shrink! Until I learn to be honest with myself about how angry and alone I fell sometimes, a shrink isn't helping. I've found these boards to be more helpful and less expensive. I'm thinking the shrink might be helpful if you have a goal in mind, but since mine was just to vent and feel understood, my experience fell short.
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thanks ladies
I pretty much spelled it out for my husband. Hope it got through!
Canuck
Can you take palafer or something to get your hemoglobin up? Eat lots of leafy greens and some red meat. You are young, it should bounce back! For reference, we transfuse post op bone surgery patients when hemoglobin is less than 80. Hope it come up ASAP!
Are you still taking premeds for taxol? I don't have to if I don't want to but I haven't had an allergic reaction and don't want to mess with a "good" thing. Only 8 more to go Canuck!
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radical. I believe you are right. My biggest fear about a shrink is they will just give me a pill, and I'm not the pill type! Especially now! I get most of my frustration out on these boards being able to talk to you guys. I really don't know how I would have handled all this without this forum! Have a great weekend everyone!
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Radical, - Our Moms were right, - too bad we didn't listen sooner!
As for 'shrinks', - I think the only one who would really be helpful is one who is a cancer survivor him/herself!
Agent, Here in NY, only psychiatrists can dispense prescriptions. Psychologists can not, and look to help with different approaches, and in fewer sessions, too.
I agree with the thought that these boards are far better than almost any 'therapist'!
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Hey Islandmama,
No they aren't recommending anything for my hemoglobin which is frustrating! I an takjng iron supplements but my mo says that won't help fast enough and chemo will keep knocking it down.
I still get dex and Benadryl before each infusion and I won't mess with it as it seems to help.
My kids are all coming down with a bad cold, knock on wood I don't get too sick as I'm sure I'll catch it!!
Agent, use us instead - we are cheaper and more helpful than a shrink!
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Story time Girls!
Yesterday I ran away to the beach. I always stop at the same store halfway there and pick up a snack. So, I came out, got back in my car and realized I couldn't open my bottle of water with these numb fingers! I glanced up and saw an older lady crossing the parking lot so I rolled down my window and explained my fingers and hands weren't working normally due to chemo and would she mind opening my water for me? She was a short, adorable older lady and she stepped right up grabbed my bottle and began to wrestle with it herself, after a few seconds I was afraid she couldn't do it either but she got it open and with a huge smile she handed it back to me. That is when I realized she was missing some fingers! Her name was Cathy, a 67 year old librarian from Knoxville tn. Cathy had a sarcoma( I hope I have that right) several years ago, lost 2 fingers, went through chemo, radiation and is living after cancer as though every day is her last and best! She drives from TN to the North Carolina coast every year by herself because she loves the ocean, and darn it she wants to!
We stood in that parking lot for an hour, comparing cancer stories and experiences, we laughed, we cried and we cussed a little! She had made real changes after cancer that made her life really meaningful to her, she doesn't suffer fools, spends her time doing what really matters to her, being generous and shares her precious days living in the moment. I learned a lot from Cathy, she was awesome!
Now ordinarily this would be the end of the story, but no it goes on! I made my way to the beach, my main goal was to find some fall clothes that would accommodate my new girth! I went in my favorite store bought an obscene amount of clothes in my new size. While Nancy was checking me out she was asking about my treatments. I had on my ball cap and you just can't hide this "look". I told Nancy I had finished my chemo a week ago and even though I'm not normal yet I am so glad to have it behind me! Nancy started to tear up and said the lady in the store next door was going through an awful time, she was in the middle of treatments and very depressed. I gathered up my bags (prayed I would know the right things to say) and went next door!
Lynn is a 60 year old shop owner, going through chemo for ovarian cancer, very irreverent, funny and scared. She is afraid she going to lose her business because she is so sick and has been closed so much over the last several months since her diagnosis. Her landlord isn't being understanding. Lynn has a good prognosis but she says she has had a lifelong struggle with depression and has been suicidal at times during this illness, but I can tell she has the grit to drag herself across the finish line. She isn't alone she has a partner for support and is more concerned about her sister who has had a stroke than herself. As I left Lynn's shop we exchanged emails, hugged and I told her I will be back.
My day at the beach, turned out to be one of those days you carry with you always. I have been so wrapped up in me and how bad I have felt. It was really eye opening to look up and out and see others, their stories and how they are hauling themselves up and over this thing called cancer.
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Wonderful stories Agent99 thank you for sharing.
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Agent...now that's therapy!
There are so many of out there and our new "look" gives people a chance to open up and talk.
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it's so sad how common cancer is. I wish I was the only one, but I continually meet others in the beginnning, middle and end of their journey. Thanks for sharing your day Agent! You probably made a difference for Lynn...I really hope she is able to keep her business!
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Thanks for sharing , Agent!
I hope everyone is feeling ok today!
(This is my first week without a treatment since May 2nd!! )
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aw Agent
So, my friend told me that we are going on a trip when I'm done treatment in the spring! ANYWHERE!
I just need to figure out where that is! Any suggestions??!!
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Oh Yes, Come to Nags Head NC, the beach!
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Negril, Jamaica! That's my recommendation. Best vacation of my life and very relaxing!
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I'll check it out radical!
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Islandmama - anywhere that you can relax on a beach sounds pretty great to me!
So ladies, as most of you know, I am on weekly Taxol. I get a lot of pains everywhere but quite often in my boobs or just under my boobs and I have to say when I get these pains it freaks me out..blaming the taxol, but wondering if you guys had the same experience?
One more thing,I seem to be growing hair but it's thin and fine...is this real hair or chemo fuzz?
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oh Canuck, we are the same
I've got pain in my ribs too. For me it starts in my muscles in my back and radiates to the front. Sometimes it feels like it starts in the front and other times it feels like it comes from the back. It freaks me out too but my onc didn't bat an eye!
Here is me! I think it's hair!
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I have the same fuzzy "new bird" look too!!! Agent99 - loved the story! I started going to a shrink because the anxiety I experienced after every big dose. Crazy! I'm also a single parent dealing with a 17 year old daughter who is hell bent on independence....but not in a good way. She's in therapy too and has been for several years. The stress of my issues, I'm afraid, has been a bit much for her - fear of my health, fear of what it means to her, fear of college and graduating high school. She's venting in all the wrong ways.
Which, of course, makes me think a beach get away is in order on the far side of this treatment! Loved your story, Agent, and your asking for help. I own my own business and, being in construction, I haven't been able to work since I've started my treatments. It scares me to think of what it's going to take to ramp back up again and hopefully pull in some paychecks! I look at it this way....taxes should be easy to calc come April 15!
You ladies are amazing and I love your stories, your concerns, your issues, your laughter AND the pictures!! We have come a long way, that's for certain. Here's to your wonderful day today!
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well you guys both have more hair than me but mine is starting to get some color!
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