Starting Chemo April 2009

Lena - if we had our way, this little band of women would be camped out on your doorstep - I know that doesn't offer much practical help, but hopefully it is a nice thought to hold onto

Yes, you are correct...palliative care specialists try to come up with the solutions to the problems you describe so that QOL is acceptable to you.  Hope you get hooked up with someone good - it can make a great deal of difference.

I am almost back to my pre-breast cancer walk level of function.  That's not saying a whole lot, but I'm managing.  Thanks to all of you for asking after me!

I'll be by in the next few days

Geri

Today in National Breast Reconstruction Awareness Day in Canada -- the first time ever and spearheaded by a couple of the plastic surgeons here in Toronto. Apparently next year they are going international. All over the country there were special sessions being held. There were 3 here in Toronto. I went to one this evening and was very impressed with the presentations. Although I can't say I learned anything new, it's obvious that the ps here are starting to take this seriously and are aiming to do more education as well as making recon more accessible. I still haven't totally made up my mind but thinking about it. If I do, I have to coordinate with the birth of the new baby -- ie. getting it done well before so I can help with the baby. 

Hi everyone,

Geri, glad you are starting to get back to normal...

Helen, the sessions you wrote about, sound very interesting. I am starting to look into options now, I think I am ready to start moving on it. I will keep you all posted on any developments.

Titan, I am so happy that the wedding was a special time for you all. Enjoy the down time now : - )

Betsy and Lena, thinking of you as always!

Sending everyone hugs for a good weekend, Judy xxx

Hey Lena - look at that...last week you were on a 3 mile walk with me, and this week you are hiking to a mountain top with Amy!  Everyone is pulling for you.

Geri

Oh no no no Titan, there was no sex or cheesecake at all -- it was just something my Pack Rat suggested before he went off to CT for the week to work at the office (he just got home Friday night and now he's passed out in my nest). Although short of last week with him working out of state, we've been getting together about 2-3 times per week. Just having dinner and hanging out watching Star Trek and movies. Tonight we ate out at the Salt Hill Pub (and I had a strawberry dacquiri, lotsa calories in THAT no doubt!). But sex? Tonight was the first sex in 3 weeks actually, and it was largely experimental -- to see if and/or what we actually COULD do anymore (the catheter pain drives me batty because it's so unpredictable, and the ascites bag totally turns me OFF sexually -- every time I see or feel it I feel zero desire and zero confidence, and THOSE were the things he found sexually attractive about me -- how I was such a wild woman in bed! Anyway, we did find a couple of things we can do (although I insisted on nightlight only and my top stayed on cause I didn't even want him to see the OUTLINE of that frickin bag), and I have a mental note of "a couple strips of paper tape to hold it up" because there actually will be a next time. This is because even though I hate the damn bag we did find ways to do things that didn't hurt the catheter area at least, and I'd started down the path to getting way into a crying jag depression at the idea of my sex life being over before I had a chance to just die already. And somehow he DOES still want to have me in bed too and says we can work it out and find different ways to try as the situation warrants. And he SAYS the bag won't bother him but if it makes me uncomfortable I can keep the lights low. Not having to see or think about or feel it did help me -- but then I was up on top of him (well hey it's a position with no frontal catheter area body contact which would hurt) -- I did start to get a little bit wild even but as soon as I felt the bag slap against my thigh I TOTALLY lost interest (I wonder if this is what it's like emotionally for impotent men!) and it took awhile to reconvince me/get me back into it, but he did and we tried something else which worked, similar to the "Less Than Two Weeks After The BMX Sex" thing (the paper tape idea is so I can try on top again without the damn bag making itself so tactilely obvious).

The doorstep is a little small and uncomfortable, but there's probably plenty of room out on the deck for you girls, but you better bring some really warm fleece sleeping bags else you'll freeze to death.  Well maybe Helen is used to that kind of thing so she won't freeze as fast, but still.......!

Oh, and I suppose you can go on all your fabulous trips and just live your lives, looks like I'm having a little too much adventure all on my own. But we WILL be doing a train up Mt. Washington soon -- probably the next nice day we get. There's not much left of that now so my Pack Rat already okayed a floating vacation day so he can up and take us there with a fair bit of spontaneity. This is just a day trip, but he always made it sound so cool when he told me about it, it ended up on my Last Bucket List. The Last Bucket List is all small stuff, since I already got to do the Original Bucket List of "Stuff I GOTTA do before I die!" before cancer (being a musician, composer, recording artist and performer, being a mad scientist, being a writer and falling in love "one last time"). So here's the Last Bucket List (from after getting cancer; no particular priority):

Get my ta'Valsh sims up and launched already (recently began some of the major "download processing" to set this up finally).

Getting ALL my simmies and their stuff backed up to thumb drives or DVDs so I can send them to my Simming buddies so my simmies don't have to die with me. 

Mount Washington.

One more Birthday Cheesecake Week. 

Grow and harvest one more garden.

Make and eat a batch of Moon Cookies (LOOOOOONNNNG story! The only people who ever liked them were my grandma who made them, her son (my dad) and I who was totally crazy about them. Finally got my hands on the old family recipe, just need to buy a couple things and make 'em. 

Go to a pet shop and play with some real rats (who I KNOW would love me if I hand fed them some Moon cookies!). :-D 

Yeah, just a few small things and I can be done. 

Judy - so very sorry for your news about your MIL - your poor husband!  This cancer thing really sucks, but your mother in law will get great strength from you.  You are such a centered and compassionate person, that I know whatever your mother in law decides, you will help her and your family to deal with it.  Sending you (((HUGS)))) as you would to any of us facing the same difficulties.

 I'm glad that you seem to like your new oncologist, and any of us having to get tests and then wait for results, know the angst that can bring.  Since these seem to be screening tests, hopefully it will just mean some waiting anxiety.

Lena - you are so articulate in expressing what you want and need.  Of course Pack Rat still wants you, drainage bag and all, because he knows what kind of a gem he has in you!  In some ways I think of what my bucket list is, and find that I am rather boring compared to you   I'll have to work on that!)

Some happy news - I decided to bite the financial bullet (see above statement about bucket list), and called my DD yesterday and told her I am treating her to a vacation again this year - she and I are going to Montego Bay in Jamaica in February.  I read Lena's post, got on the internet and booked the trip - definitely not my normal cautious self, needing to plan, investigate, plan some more, compare at at least ten sites, etc.  Even my daughter said "Mom, is that you, deciding to go and making reservations, all within 30 min.? Yup... Boom - it was done - thanks Lena!

Geri

Thank you all for your kinds words; I am not sure what the next few months will bring, but it helps me so much having all of you to share with.

Geri, good for you! A vacation in Jamaica sounds perfect! Sometimes, we do surprise ourselves and do things completely out of character, sometimes I find it is just an instinct that pushes me and I usually have a really good feeling about it once I have done it. So, enjoy these moments, I am sure the trip will be fabulous.

Betsy, I hope the CT scan, chest x-ray and EKG went ok yesterday. It takes alot of strength to start doing all this again, I just need to make routine follow up appts for stuff and I am finding that hard enough. I am thinking about you and sending you positive thoughts and energy to help you through.

Take care of yourselves, sending you all (((HUGS))) and I will come by again soon, Judy x

Judy, that's terrible about your MIL! The most important thing about her treatment plan (or non-treatment plan) is that it be what SHE wants. Hopefully you and your husband will be able to help her make her wishes known to the rest of her family (not to mention her doctor)! Y'know, she doesn't have to do the kinds of Killer Chemo which brought us all here together in 2009 -- much to my shocked surprise the oral chemo I take now actually IS pretty gentle! So if she's afraid of Killer Chemo (I was!) but wants some kind of treatment, maybe she could talk to her oncologist about the less harsh treatments. About your checkups and testing now -- ultrasounds aren't bad at all unless you're in pain from something and they have to position your body in a particular way to do it and it hurts, so I wouldn't worry about those, personally. The colonoscopy I have no experience with but at this point, like I CARE?! LOL

Geri -- if I really were a "good influence" on you as Betsy suggests (such an idea made me laugh so hard I almost pissed my pants!), you wouldn't be planning expensive vacations like that. So, you two enjoy yourselves, but you get all the credit for the idea and having set it up. LOL

Betsy --  That's OK, you don't have to understand sims (yes, they're a "they"). Nobody does until they've seen 'em for themselves, and not even all of those folks get 'em either. I just was rambling about them, is all. No, you didn't tell me you'd planted the blueberries yet, only that you had the beds. Well cool you got them planted. Mmmmmmmm blueberries. I'm still sticking mostly to salad veggies I think if I'm still around to plant in the spring, but the idea of trying another strain of canteloupe appeals, as does green beans or broccoli. Have you gotten your scan results yet?

Helen -- hey, NH might actually be warm to YOU! I've heard some tales of Canadian winters which make New England's look pretty balmy almost. So if you're doing OK with your walking, you can wear one of my pairs of short-shorts! heheheheeheee! 

Amy -- hope you're enjoying that hiking in Virginia. I most certainly hope your weather is nicer than ours. We've had grey, wet, windy and chilly mostly. Yuck!

And now for a total surprise, it shocked the hell out of me. Yes I CAN have Medicare-paid home hospice without going off my chemo after all! (and they'll pay for the chemo and all my cancer meds too!) And y'know why? It's because I have that expiration date you were all so horrified about when I told you all I had gotten it a few weeks ago. I found this out yesterday morning -- a home hospice nurse called, explained briefly, and asked if I was available to meet in the afternoon. Lovely woman and we had a fun visit even in spite of all the paperwork -- I made us some tea while we did it and chatted it up pretty fast. Too bad she has to be my hospice nurse though -- I'd rather have her as a buddy. She lives about 5 minutes from my house and she's my match in the "tell it like it is" department -- including the "salty" expressions. And she knows geek humor when she sees it (namely how I decorate my house). LOL! But home hospice is going to be taking almost all of the bovine excrement concerning my medicines, Medicare, co-pays and the damn paperwork and prescription chasing off my hands! OMG! That sounds too good to be true. She's going to come over once a week and do the maintenance on the Awful Ascites Bag for me -- the weekly changing that is, and also says she'll call early on bag day to tell me to let me know it's time for me drug myself silly so the pain pills will be in full effect for when the bag is being changed (which thus far has been nothing short of bad bordering on excruciating). :::::faints:::::

Well, gotta go and make some chicken and sweet potatoes; my Pack Rat's coming over for dinner tonight. Have fun everybody.

Thank you all again for your support. Helen, you are so right, we need to celebrate the good things in our lives...I will keep you all posted as there are new developments.

Lena, I know you are right about my MIL and we need to respect what she wants. I am scared for her, just thinking about it. I do think that the cancer is aggressive though and I am not sure if they have offered her the oral option. I will ask her about that. My husband and his brothers have a rather strained relationship, so we are all going to have to get on board and pull together with this one! Thanks for the encouragement for my tests, I need to make the appointments and then forget about it till the day arrives : - ) I am sorry that you need to have a hospice nurse, but pleased to hear that you get along with her, that is so important.

Amy, good to hear from you on your vacation! Sounds like fun. I loved it when you wrote:

"I am very happy". I think that just says it all. Enjoy the rest of the trip!

We are travelling North this weekend to see old friends which should be great!

Betsy, how are you doing?, Geri, are you packed yet? LOL! Titan, come by when you can.

Thinking of you all...

Sending you all hugs as always, Judy x

Thanks for the update Betsy, never a dull moment! Glad you got through it.

Hope everyone has a good weekend,

Sending you all hugs, Judy x

Can you forgive me for complaining about a trivial issue ------BUT, there is a blizzard outside my door, expecting a FOOT of snow before Halloween!!!!  This is the reason I'm going to Jamaica in February.  However, if the damn winter is going to be starting this soon, I may have to escape to a warm climate sooner than that.  On a serious note, I do suffer from SAD in the winter, and ever since bc it has been worse, so I am not looking forward to another long winter.  Lena - do you think YELLING at the snow would help????

OK - enough for me

Oh yeah Betsy, one more word you need to add to your pre-procedure vocabulary:

LIDOCAINE. 

Hi everyone..you guys have been busy!

Judy..glad you liked your new onc..sounds like she is very thorough...but an colonoscopy..yikes..I need one of those too but have been putting it off.

The snow has missed Ohio but I'm sure it won't be long until we see some white stuff..not looking forward to it at all.

Have a good weekend everyone...it's 1:00 am and I guess I should go to bed!

Okay I went outside to excavate the car, just to see if I COULD. When winter REALLY hits, this is going to truly suck.

Going into Week 4 on my chemo and I don't think it's working. Oh well..... 

Betsy, think of it this way: it's awful, but it could be a lot worse. Be glad you're not me, for instance.  

OMG

I was actually "too tired" for.....

So I guess this means the "beginning of the end" really is here! 

::::sigh::::