A Sensible Dinner - Pearlieq's Journal

[pearlieq]

Surfacing again...

It was a quiet couple of weeks after mom came home from the hospital. I think she stayed home another week or two after she got out, and then went back to work one week. The break from chemo really seemed to do her a lot of good. Toward the end she was looking almost normal.

Unfortunately, last Friday she had to start up the chemo again. This time it's a new drug called carboplatin (sp?). So far it's made her really, really tired, (which was expected since she already had super low blood counts the day they gave it to her) but she hasn't sprouted horns or anything, which is always a relief because you just never know with this stuff...

She's going to have a transfusion tomorrow, which will hopefully make her feel a little better. That's a loooooong appointment, but if it works it's totally worth it. One day at a time, I guess.

She officially put in her paperwork to retire at the end of Jan next year. It's a relief on many fronts, so now we're just praying she can make it until then. She wasn't able to work this week, but I'm hoping the transfusion and a lot of rest will make it work for next week.

DH is enjoying his new job, which I'm grateful for. It's a little maddening for me because he has lots of expenses, but has to get reimbursed for them instead of having an expense accout. I understand the the guys wanted to use their own cards so they could get miles, etc. but it just drives me bonkers to try to keep track of it all. Hopefully we'll work out a system here.

For my part, I seem to be working off of the same to do list:

--work
--take care of mom
--chores
--try to figure out what to do with my life

In the downtimes lately I've been doing a lot of thinking about that. When I'm not working or taking care of mom, I have seemingly endless downtime, and I need to figure out what to do with myself other than hanging around online and watching TV. That's not a life.

I just don't know what to do. Sad as it sounds, I really don't have any dreams. Wow--it's really depressing when you say it like that. But I just don't really have any goals. I don't have a deep, secret desire to climb mountains, start a business, or learn to paint or something like that. So what? What do I do with myself? I can't just sit around and watch VH1 specials for the next 60 years, you know?

So, that's pretty much it. Mom's continuing saga, DH's job, and my existential crises.

I did take a leap of faith (or denial, maybe?) today and I booked a room at SSR for me, DH, mom, and my brother to go to WDW next April. I know the odds aren't really in our favor that it will work out and mom will be well enough to travel, but it still felt good to do it. I really, really wish for this to work out.

I hope all is well with everyone else. I think of you all so frequently, even when I'm MIA.

 

[toystoryduo]

pearlieq~

It's good to hear from you WISH sis! We've missed you around here.

I'm glad to hear that your mom had a couple of quiet weeks before the chemo started again. I hope her transfusion goes well today.

I'm glad you're DH is enjoying his new job. I hear you about the expenses and keeping track of them though. My DH is self employed and we go through the same thing every month. It's definitely challenging!

I'm sending your way. I know what you mean about not having any dreams so to speak. I think the important thing to remember is that life is a journey and maybe the downtime in your life is preparing you for the next best thing to come. Keep on keeping on, WISH sis!

I hope you have a safe and Happy 4th of July. Please be sure and take good care of you!

 

[Amy&Dan]

Pearlieq: I hope your mom's new chemo works and isnt' so harsh on her. That stuff is indeed scary. I know with my mom it took a few different types to find the right one. I hope this is the one for your mom. I think its great you made that trip plan. I took my mom to SSR and I remember thinking she probably wouldn't get to go. But she did and we had a marvelous time. SSR is lovely and very relaxing. Just think positive.

As for your life, can I say I feel your quandry? I think when you are taking care of a loved one it becomes your focus and you, yourself gets sort of lost in the shuffle. The answer to what you need to do for you will come in time. In the meantime, if watching some tv and being on the internet helps you to escape a bit, don't stress about it. I am thinking the rest of the world is doing pretty much the same things with thier free time too! Just keep your eyes, ears and heart open, something just right for you will come along.

You are always in my thoughts and prayers. You have been a good friend to me when my life was tough, we all understand that sometimes getting onto WISH isn't going to happen for you. So don't stress about that either.

Just hang in there sweetie, we are all pulling for you!!

 

[goldcupmom]

Hope things are improving a bit for your mom & the chemo. I"ll be thinking about you as I pass thru Chicago tomorrow on the train!!

Lots of prayers being said!!

 

[toystoryduo]

Sending prayers for you and your mom.....Hope all is well!

 

[Amy&Dan]

Hi Pearlieq: Sending some good thoughts out to you and your mom and hoping things are going well. As always, you are in my prayers and thoughts.

 

[goldcupmom]

Hi, Pearlie! Thinking about you & praying all is going ok for you & your mom.

 

[toystoryduo]

Hi pearlieq~

Just wanted to let you know that I've been thinking about you and praying for you and your mom. I hope you'll post an update if you get a chance. We miss you!

 

[pearlieq]

9/21/08

Thank you so much for looking in on me and keeping us in your prayers. I think of you all so often as well, even when I'm not here.

This summer was kind of rough, but manageable, I suppose. I never know exactly what to say about how my mom is doing. She was in the hospital a couple of times this summer--one was just an overnight, and then she was in for a week over her birthday.

Things aren't going well, unfortunately. They don't seem to be able to get the cancer under control, no matter what chemo they give her. During her last hospital stay we found out that the cancer had eaten up more of her thigh, causing it to fracture. The cancer still seems to be active when they test her blood. They're now trying two different chemo drugs together, as kind of a hail-Mary to see if it helps. I'm not sure they have many more ideas.

I don't know quite what to think. November will make 2 years since they found the cancer spread. Statistically, most women with that have about 2-3 years. It's hard to think that this is the beginning of the end. Sometimes I look at her and she looks fine and this all feels so far away. Then, when things take a turn, she's so weak and hurting and it's very real.

Her oncologist is very positive, bordering on chirpy, which is nice, I guess, but I don't know what to expect. It's like I realize that she's not a woman in good health. Healthy people don't spend a week every month in the hospital. Healthy people don't need transfusions frequently. But it just doesn't seem real.

I'm turning 29 today, and what keeps running through my head is "What if this is the last birthday we share?" Everything has that gravitas. I guess I'm just glad we get to share this one.

Otherwise, it's been the same-old, same-old. I work, DH works, we do our thing, we get by.

I hope everyone is doing OK. I wish you all the very best.

 

[toystoryduo]

Oh pearlieq~

Sweetie, I wish I lived closer to you so I could give you a gentle hug. I'm so sorry to hear about all that your mom has been going through. You both continue to be in my thoughts and prayers. If there is anything that we can do for you, please let us know.

Sending our love and prayers from Ohio......

 

[Amy&Dan]

Pearlieq, I am so sorry things haven't been going better. I know right where you are with this thing with your mom. Wanting to be hopeful, but also needing to face facts. I had one of those chirpy oncologists too. My best advice is to talk to one of the nurses. They tend to know much better ways to deal with famlies. I am all for being optimistic but as the family, you also have to have the facts. Just hang in there. I hope this chemo works. If it doesn't, just know that your mom has options. Going on hospice can sometimes prolong life since they are all about getting patiensts comfortable and living whatever quality of life is available. Which is sometimes more than you might think. You have been a wonderful daughter and caregiver. You and your husband have risen to this occasion with love and grace and total dedication. That says so much about who you are.

Please take care of yourself through all that you have on your plate. You are so young to be dealing with all of this. I hope you had a happy birthday yesterday! I know how hard it is to exist inside this illness your mom is dealing with.

Don't lose hope and know that we are all here for you. Take care of you my good friend!

 

[goldcupmom]

Wow, Pearlie!! I hope yesterday was an OK Birthday, despite the situation.

This is a really hard time for you, and it's terrible that anyone has to go thru this. Hang in there, try to cherish the time you have left & create lasting memories.

You & your mom will be staying in my prayers, as always. We're all here for you when you need us!!

 

[toystoryduo]

Hi Pearlieq~

I wanted to stop by and let you know that I'm thinking about you and praying for you and your mom. I hope you get a chance to post an update on how everyone is doing soon. We miss you around here!

Have a great Wednesday!

 

[goldcupmom]

Thinking about you & Praying, Pearlie!

 

[Amy&Dan]

Hi Pealie, just sending some hugs and prayers out to you. You are always on my mind and in my heart. I hope things are better.

 

[pearlieq]

You guys are so sweet! Thanks for looking in on me. I think of you every day too.

Things are...going, I guess. After the last hospital stay (early Oct, if memory serves--it's all a blur) they switched her chemo again. She just finished the first cycle of two new drugs. It's not the worst she's ever had, but not fun either. Lots of mouth sores with this one and she's needed 4 units of blood to keep her red counts livable.

We see her doctor on Friday, but I'm assuming she'll do another cycle of this and then see where the tumor markers are.

I can't really say she's had a "good" day for a while. She's sleepy all the time and can't do much. And she's not eating hardly anything. I'm starting to see that she's going to need more care soon, but I'm not sure we've got a lot of good options on that front. Sometimes I have to remind myself to keep today's problems for today and let tomorrow's come tomorrow.

On an up note, it's looking like she's going to get to retire early, so yay for that! She's trying to decide between either Thanksgiving or Christmas. Personally I think Christmas is the best choice, but we'll see. Either way, it's a heck of a lot better than late Jan!

DH and I are doing pretty well. DH has started working out pretty regularly and has made a few improvements to his diet, so he's losing weight like a fiend! He's probably down at least 50 pounds and is down about 6" around his waist! I'd be lying if I said I wasn't enjoying it...

Of course, he's dragging his feet about buying new clothes. He keeps insisting "I can just poke a new hole in my belt!" So I've been having fun teasing him about his Hammer-pants.

I'm down a few pounds myself, but nowhere near what he's done. We've been eating in a bit more and I've been trying to keep better things around the house. When I weighed myself today I was down to 349.5, which means I fit on the doctor's scale again. It's funny the little milestones we have for different weights.

I'll be trying to keep it up, and ideally I'd like to start visitng that gym I'm paying for, but, as Tracy says, baby steps.

I can't believe the holdiays are just around the corner. We'll be having both at my house since we've got a ramp for Mom. My brother is coming for Christmas and my evil Aunt won't be at either, so it's looking promising! I'm having my annual cookie exchange party the first weekend of December which will be a lot of fun.

We're kicking around the idea of going somewhere early in the year. Both the DCL deal and the 7 for 4 deal are tempting. We aren't going anywhere until the trip with Mom in late April so there's a nice big stretch of time in there to fit in a trip. I'm having trouble convincing myself to jump. DH and I don't appear to be too badly affected so far, but with the way things are going, I'm thinking twice about spending on a trip. We'll see...

I hope everyone is well. Love and good wishes to all of you!

 

[Amy&Dan]

Pearlieq: I am so glad to see you around here, we have missed you! But know that you have so many priorities in life right now. I am so proud that in the midst of all of this stress, you and your dh have been changing habits and living a healthier lifestyle. Fitting on the doctor's scale is a huge milestone, so very good job!

I am so glad your mom is able to retire before the end of the year, what a huge relief that must be. This chemo sounds brutal, I am really praying it helps. I so remember those days of rounds of chemo hell, then waiting for the tumor markers and scans to see how it did. I am praying for your mom, you your husband and all the rest of your family. As you say, one day at a time. Is there a social worker that your mom's oncologist can recommend for options with long term care? I know these are not easy things to deal with, just keep hanging in there.

Go on a trip! A cruise is my vote for what that's worth! Man, if I had the money, I"d go with you. Times are scary but given what you are going through, I say go for it. If not a big trip, maybe just a weekend with some nice, fine dining, massages or whatever else you can do to pamper yourselves. You guys have earned it.

Again, so good to see you. And also again, I am super proud of you!

 

[pearlieq]

It's great to see you too, Amy! Thanks so much for the prayers and good thoughts.

Yesterday was a fairly decent day. It's been kind of slow at work this week, which I'm thrilled about. I tried to tackle a few projects around the house and start to get ready for the holidays.

A while back Amazon had a case sale on groceries and they happened to include the food my cats eat, so I went ahead and bought a case. Naturally, no sooner do I get it home then the little stinkers decide the don't like it anymore! They still like the same brand when I buy it from our local grocery store, but maybe the kind Amazon had was from a different processing plant or something.

I wanted it to go to good use, so I took it up to the county animal control facility. I had never been there before. It looked like an OK place--not the best shelter I've ever seen but not too bad. They said they could use the food, so that was a plus. I guess they're really full--they even had a sign up saying they couldn't take more cats. Of course, I told DH this and he said "We could take more cats". Yipes! I love them and all, but I don't know if I'm ready to have 3 or 4!!! We'll see...

We decided a little while back that Wednesdays would be "no TV" night at our house. I expected it to be a hard sell, but DH is actually more enthusiastic about it than I am most weeks. I think that's because he's got it in his head that if we can't watch TV we'll find other ways to occupy our time . Men...

It's actually really nice. We spend way too much time in front of the TV and our laptops and so when we turn them off we're a little adrift, but we actually cook dinner together and talk which is cool. DH surprised me by asking if we could start reading a book together again. I had forgotten how much I enjoyed that.

I'm going out tonight to try to get some holiday shopping done. I need to find things to fill gift baskets for all of my mom's employees and I have to find favors for my cookie exchange. I'm totally out of ideas. Hopefully inspriation will strike at the store.

I bumped my party up a week to accomodate a friend who is going to be out of town and now I realize I'm going to need to scramble to get everything set up with only a week after Thanksgiving!

 

[pearlieq]

I am so hungry!!!!!!

I have to fast for a blood test this morning and unfortunately it's not until 9:30 and I woke up around 7:00. I'm dying! I have visions of everything from meatballs to Red Robin dancing in my head. I don't even like Red Robin all that much!

I'm down another couple of pounds, which is nice. Ironically, I haven't really been trying too terribly hard. I've been trying harder to be frugal, which I guess has the side benefit of helping me drop a pound or two.

Is that really it? All the years, the diets, the doctors, the psychologists, the eating disorder specialists, the journals, the Weight Watchers, the threats of surgery and it's going to come down to the fact that I'm too cheap to weigh this much?!?

The shopping trip last night was fairly successful. I picked up some placemats for myself. They're light blue organza with glittery snowflakes on them. They're so pretty!

I also think I solved the problem of Mom's gift baskets. I had originally ordered these adorable Christmas towel sets from The Lakeside Collection, but, as with everything else with them I'm told, it was backordered. Between the "you must allow 7-14 business days for processing" and the "you must allow 15 business days for shipping" it wasn't going to get to us until mid January! What a crock!

So I had to abandon that idea and try to find something else. Luckily I stopped by Big Lots last night and they had reasonably cute little fleece throws with holiday designs. The price was right, so I snapped up 7. Hopefully that will be a reasonable substitute. I'm also going to put in some mini Bath & Body Works items, Frango mints, and a Dunkin Donuts gift card.

My mom decided to retire before Thanksgiving, which is a bit of a shock. She's having a lot of pain around her original tumor site and just said she can't do the whole daily grind anymore. This all just happened so quickly that my head is still spinning a bit. I'm happy for her, but nervous about all the details including her retiree health insurance. I think things are going to be very tight for her. But hopefully it all works out and she can take it much easier now.

While I was at Big Lots I happened to find 10 packs of the new Fiber One bars marked at $2.50 each! That's about half of the price of the grocery store, so I snapped up almost everything they had. So now I'm the owner of 120 Fiber One bars, which is awesome! If you haven't tried them you must. They are so good!!! Nothing with that much fiber has any right to taste that good!

I'm off to go stare at them now since I can't eat them. I hope everyone has a great day!

 

[Lesli54]

I am so hungry!!!!!!

... and it's going to come down to the fact that I'm too cheap to weigh this much?!?

Well, Pearlieq, I can definitely say that you made my day. Took think, all of the money you could have saved along with the lbs had you been too cheap sooner.

I am glad to hear that your mom will be able to retire early. I know that it has been of great concern to you. Hopefully, this will allow her to not be as tired. My prayers keep going out to the two of you as you work through these health issues together.

It sure is good to hear that your DH has lost so much weight and is feeling better. On the plus side of things, you have been wanting him to get on board with you with better eating while you were trying to lose weight. I think you now have your support system at home, which is awesome. Health wise, this extra lbs off must be helping with his diabetes. Now for the "hammer pants"........it is understandable that he doesn't want to "waste" money buying clothes when he can adjust his belt, we all try that. But you and I know that 50 lbs is alot of adjustment. If it doesn't see the reasoning behind the better professional look that he will have in the work place with better fitting clothing, then here's another idea. Take him to the store or thrift shop, whichever you please, and ask him to just "try" some new clothes on so that you have an idea of what his new size is since Christmas is coming up. He doesn't have to buy anything. My guess is that when he sees what he looks like with the new clothes and hear's all the wonderful comments that you will be giving him, he will buy some. It's easy to not see how much better you look when you keep hiding behind the "too bigs". Then as soon as you get home, get rid of the others.

Your party's always sound like such fun! Hope you have a wonderful weekend.