Starting Chemo, November 2013 Group

Hi Ladies

Bec - Did you find the 'face to face' meeting helpful? I am toying with going to a meeting. Was there a topic that it centered around or more informal? Were some talking much more than others? Interesting about the lymphodema. I was sleeping on my Mast arm and started to notice my hand swelling. I don't think it takes much to get it going.

Lisa/Amazon - For me, the further away I get from Chemo, the more emotional and physical strength I have, so be patient, 'you' will come back, eventually. I think I held my breatth during chemo, and then after, kind of like an accodent victim, I got very emotional for 2-3 days on reflection of what coud have and what did happen. Now I am more proud of me, but the energy comes in fits and spirts. Yesterday, I walked 5K and had almost a 'nornmal' day. Today, I ate breakfast, got dizzy, almost vomitted, my legs felt like elastics, and because of exhaustion, slept for 3 hours this afternoon. I think its going to be that way for a while, ups and downs, I mean. But generally, I am trending upward. It is depressing when you are in the down though, because you want so badly to be done with this nightmare. I know that you both are going to be OK, it will just take some time.

I am attempting to getback to my old eating practices (almost vegan, low gluten, LOTS of produce). It is amazing how many carbs I now have in my kitchen. I could feed a football team on the cerial alone! Anyway, 15 lbs must come off!!

Have a great day ladies

JAB

happy Sunday, ladies.

Amazon, I had to take an Ativan lays night too.  After easily falling asleep all week from being exhausted from work, last night I fell asleep,watching tv.  I woke up,at 1 am and realized I needed to put the dog out.  After that I could not get back to sleep. Too many thoughts.  I don't know how I am going to sleep this summer when school is out and I run out of Ativan.

Bec, I would like to,go to a support group.  I should look into that around here.  I know they have one at the American cancer society, but I really don't want to go there.  It is a reminder of cancer.

I haven't walked in 3 days because of the insane wind we have been having.  Yesterday it was snowing.  So my leg muscles feel fine. But now I am waking up,with hands and fingers that are so painful I can't move them.  After I get up and start moving they are ok.  I am wondering if I suddenly developed arthritis in my hands?  

Who is still doing rads?

I am ready for some helpful tips regarding

what worked and what not during RT.

Tomorrow is my first RT planning appointment. I believe they will also do some tatoo markings as well. 

They told me no prep necessary for this.

I guess it's just my mental prep. 

Lisa: Blogging sounds like a good idea.  

Are you going to set up a blog for this or go to an existing one 

Amazon, I was typing when you posted -- I didn't do anything to prepare for radiation.  My RO advised me to use Miaderm twice a day once I started, regardless of any symptoms.  I did that, and both she and my MO seemed amazed at how good my skin was when I had only 3 treatments left.  I'm 4 days post-rads now, and I'm still using Miaderm and also Benedryl gel for the itching.  My RO said I could use Aquaphor also, but I haven't seen a need to yet.  I suppose, though, that Aquaphor could be good for the new skin in my armpit.  I've used it for years for dry skin -- effective but goopy.  

As for mental prep, I don't know why, but I wasn't really bothered by the idea of radiation.  The actual event is pretty uneventful.  Also, my cancer center is only 15 minutes away from my house, so it wasn't much of a hassle to do everyday.  So far, my skin is doing relatively well.  I know that is likely to change in the next week, but I have the great distraction of my hair growing back.  I guess I feel like the forest growing back after the fire...rebirth and all that!  I hope it goes well for you.  

Hi Ladies,

Its been a sunny but cold day here today, but the birds have come out of hiding and are chirping up a storm. I put two new bird feeders off our back deck as I am so desperate for spring. At least this way I can sit in my kitchen and hear the chickadee's. It is lovely.

Pat - The view from your deck looks great. Do you have much wildlife in the area? (deer, birds, etc?). You confirmed  my worst suspicions - Alcohol makes the night sweats worse! Sadly, I seem to no longer enjoy a glass, but have been having a bit of beer (1/2 glass with dinner) and have notices the night sweats are much worse. Are all my little luxuries going to be taken from me? I don't even like chocolate anymore. That's just mean!

Bec/Lisa - I am with you both  about being 'on'. I am not one to 'share' either so it would likely be more of my being more supportive, than talking about my concerns (to say I don't 'share' is a gross understatement...). And really, I am not sure what to share. Maybe that I want to feel better, and is frustrating that I don't,or  maybe, or maybe dealing with the ups and downs of biopsies and other tests. Just by typing potential concerns, I know I am already working the problem. But again, you just never know who you might meet in the group environment and how thier perspective might be helpful. I might try it this week.

Amazon -  good luck with your Rads this week. Pat gave a VERY good overview of rad set up several pages back. I think you'll find it very interesting.

smrlvr - I am also very stiff and sore (I do have arthritis, but this is much worse). I did a bunch a reading last week and it seems for some the effects of taxol and taxotere can be felt for several months. It should go away much faster, though.

I'm up for a heart scan tomorrow, and I see my BS on Friday to discuss the biopsy outcome. More ups and downs....

Have a good evening ladies,

JAB

Pat - I can't believe you have green stuff already. I still have snow and ice.

Amazon - take a cloth soaked in whisky to bite on while they are doing the tattoos. That little poke was painful. I only did tattoos on the sides and marker in the front.

Jab - good luck for your heart scan! And I have my fingers crossed for clean results on biopsy.

Bec65 - I hope your skin recovers quickly from radiation.

I know Ellen, I am not usually a whimp. I did chemo with no port just fine, got stabbed many times each time, and the Adriamycin needle is big. But those stupid little dots really did me in. I can't believe people pay big money for tattoos and the pain, I could never do it.

Hey all, hope you had a good day.

I had a good day -- It was my mom's birthday, so we went to her house. Downside: Husband was anxious to get on the road (he had an agenda but more on that in in minute) and got me up when I only had about six hours of sleep.

We spent most of the day at mom's, along with my little brother, his 5 year old son, my cousin and his twin 8 year old daughters, my stepbrother, his wife, my mom, and my stepdad.

I spent most of the day just hanging on the couch---and eating too much cuz the food was GOOD-- but Y'ALL understand, even if no one else can, that sometimes, hanging out on someone's couch all day can be really exhausting. I was worn out by the time we left there...

And then came my husband's agenda. He wanted to drive half an hour in the other direction to go to Bass Pro Shops in Cary and buy himself a new fishing reel. I was completely worn out but didn't have the heart to disappoint him, so off we went.

Like an idiot, when we got there, I decided to get out and go in with him instead of waiting sensibly in the truck. This at a time when my taxotere pains are doing their thing, the bottoms of my feet are sore as crap to begin with, and my toes feel a little like they belong to someone else. Plus the fact that my hemoglobin, though better, is still low, so by the time we walked across the parking lot and to the back of the store I was puffing like a great-grandpa and my husband was wondering if he was going to have to carry me back out again lol. Problem I found with my feet was that it hurt to walk but it hurt more to stand still, so I sort of shuffled slowly up and down random aisles and tried to not let hubby know quite how miserable I was-- he deserved this trip for himself-- and we did eventually make it out of there.

Tonight I am paying the price. Exhausted beyond belief (but not sleepy, OF COURSE,) every part of my body hurts--especially my feet--and my cute little hydrocodone was NOT up to the task of taking care of all this. It's all well and good though; the hydrocodone has now had mostly enough time to wear off so I just took a nice oxycodone and expect to be pleasantly asleep sometime soon. I suspect that not much will get done around the house tomorrow though: My right foot in particular is REALLY sore on the bottom.

The other mistake I made today was in regards to the food. My mom had made several absolutely delicious roast chickens, homemade mac and cheese, homemade biscuits, and some sort of peas that were pretty tasty. I SHOULD have just eaten those.  But, my step-sister-in-law had also brought along some prefabricated stuff from KFC; potatoes, gravy, and chicken strips, and I made the mistake of having a few bites of those, as well. Result: Major major heartburn  and all I could taste for hours was that one bite of chicken strip I ate. Yikes. Bad part is that I am supposed to start Levaquin today (instead of having my final Neulasta shot) and you aren't supposed to take Levaquin within either 2 or 4 hours (i forget which) of having any sort of antacid that has iron, zinc, or magnesium in it. So, major heartburn for hours without the benefit of my Heartburn Trifecta of Tums, Maalox, and Zantac, lol,, because I had planned to have the levaquin after we ate and therefore didn't bring the Trifecta along with me. Sigh. All's well that ends well though: I still had the heartburn when we got home hours later, went ahead and took my Trifecta as soon as we got here, felt much better, and will start my Levaquin at midnight...and will just have to be on a night time schedule with that this week. Oh well.

Really though, it was a good day. My MOM had a good day, so therefore it was a WONDERFUL day.... Love that perfect woman. 

Wally I am so glad you enjoyed the Billy Joel concert! I was thinking about that yesterday when we were on the drive and heard a BJ song on the radio. 

I don't really understand why people choose to get tattoos either, but my little brother has two or three and will most likely get more. I don't mind them and think they look good on smoe people but I've had enough reasons to lie still (or try to) while someone comes at me with pointy objects. I don't need tattoos.

Phebe! It's good to hear from you and great to hear that you are still doing that walking! I applaud you!

No, I haven't gotten my port out yet, but they tell me I CAN get it out whenever  I want. Now it's just a matter of timing. My husband is finishing up a big project at work and working 12 hours a day 5 days a week, so until he's done with that, I haven't got TIME to get my port removed. Couldn't drive myself even if I was going to have it done under local sedation in the surgeon's office (which I'm not,) because at the moment I can't drive because of peripheral neuropathy in both feet, but especially the right one, which is my gas-and-brake foot. So I'm just waiting....

Exercise? What is this "exercise" you speak of?  lol

I'm actually doing better day by day, except for on those set-back days, but to be honest, I think that most of my exercise for a little while is going to be spent in trying to get my house and yard back into some sort of presentable shape.  

Plus, my parents are moving to a new house. I have, in their current backyard, an old mobile home that has been for about a decade storing a ton of my stuff that I did not move when I moved down to this county, but wasn't ready to sort through and throw away. Now it HAS to be done, since they are moving, and I have (I think) until sometime in July to be done with it. 

Between those, I reckon I'll be getting all the "physical activity" I could possibly stand, though it's not technically "exercise." More like "work." Blah.  :P

Bec65 - so sorry about your hospital roommate. I'm sending prayers for her family. This disease sucks.

Oh Bec, I am sending you such big hugs right now. I know that this has thrown you for a huge loop in so many ways.

You know though, it is not for us to know or understand why this awful disease touches any of us, much less why it touches some of us and puts us through hell and then moves on never to return, and yet grabs others immediately and never lets go and takes them away from us so very quickly.  

But no survivor's guilt, okay? Because you didn't choose which you would be, nor which she would be; you each had your own road to walk. Just be glad that your roads did cross briefly and you had the opportunity to know her. That's the gift we give one another.  She said you made her day, remember! You brought her some comfort and happiness when she needed it. YOU were a gift to her. 

And if you need something more than that---maybe there is *supposed* to be something more than that. Remember what you learned about her, from her, about how the medical profession failed her. Maybe you're meant to be one of the people who carries her message onward so that we can help STOP the medical profession from failing women, by letting women know--whether they want to hear it or not--that they have to be their own advocates, that they have to push for medical care when they KNOW that they need it....  In fact, just because you told us about it, I know that you ARE meant to be someone who carries her message forward, because I know that I won't forget it, and I can add it to my own story, which I tell at every opportunity, appropriate or not, because women need to KNOW.  

Again though, I send you a big hug, and although I don't know what you believe about the afterlife or whatever, my personal gut feeling is that SHE is sending you some mighty big hugs, too and telling you to smile, and keep healing, and keep on going, because it's all okay in the end. 

I had my planning yesterday and a chance to chat with my RO. That guy is amazing. He called me at home to let me know it's OK for the radiation therapist to call him to talk to me that day. I got pretty emotional during the appointment though because of anxiety about what was ahead of me. I was nervous about the markings as well. I broke down when they told me I had to get 6 tattoos that day. Six?! I have never even heard anyone getting six! Three or four maybe, but six? That information broke the camel's back and I started to cry. I thought of the whole thing as another reminder of this scary disease. It was yet one more punch in the gut I had to endure. I felt exhausted from my last chemo. I thought of the markings as another insult to my body by this ugly beast.

Anyway the markings, even though I was afraid of them, didn't take long to do and didn't hurt me physically. They felt like a poke. (And no I didn't bring any cloth soaked in whiskey to help me through the procedure). I suffered mostly emotionally because the markings represent a permanent reminder of this horrible illness. As though a missing breast and a long scar on my chest was not enough. I felt violated! I cried some more when my hubby picked me up after the procedure. He tried to cheer me up after seeing the blue ink cross and circle drawings on my chest and said: You look cool like one of those Celtic warrior women! Of course he had no idea at the time of the size of the real tattoos vs. the washable ink ones.

The tattoos are in fact tiny, and they don't even look like tattoos, they have the appearance of tiny blackheads. Really ugly! Yes, one more thing to overcome, but then when I hear stories about that poor lady who passed away that Bec knew personally, I think of these things as nothing in comparison. Indeed this is nothing if you look at some other lives and stories out there. 

Bec, I am sending you hugs. It must be difficult for you. I think and pray for the family of that lady. I believe we need to tell our stories, but also her story to the world. 

We need to tell the world that self-advocacy helps and that being pro-active helps, and that her fight was not for nothing, but it brought us strength. 

I believe she is in a better place now and sending all of us her love and courage.

One other thing: 

Has anyone experienced a bloaty, sometimes crampy, muscle twitching abdomen that feels full and achy especially around the ribs? I have had this since my last chemo which was 2 weeks ago. 

My RO is sending me for a liver ultrasound.