A Sensible Dinner - Pearlieq's Journal

[toystoryduo]

Oh Pearlieq,

I am so glad that you have decided to go to WDW! I agree with the nurse practitioner who said that your mom's quality of life is just as important as her physical health and that she needed to do something that make her happy. I pray that this is a wonderful vacation for all of you!

 

[Lesli54]

Good morning, Pearlieq!

I saw your post go through my email yesterday, but just couldn't get here to reply.

I think your choice to go is a good one as it is important to maintain as much quality of life as possible. You and your mom know all the risks and everything that you should look out for, besides I am sure that the med team at WDW is an excellent one. Relax and enjoy the time that you have together!

Of course, you can always pack me in your suitcase, the weather around here has really been rough on the mind.

If we don't see you before you leave, have a good trip.

 

[toystoryduo]

Hope you're having a wonderful time in WDW, pearlieq!!!!!! Please let us know how your trip went when you get back.

Have a safe flight home!

 

[goldcupmom]

I'm praying you are having a wonderful time making many great memories at WDW!!

 

[toystoryduo]

Hi Pearlieq,

Thought I'd stop by and see how your WDW vacation went. I hope everyone had a great time!

Have a great day today!

 

[toystoryduo]

Hi Pearlieq~

Thought I'd stop by and see how you are doing. I hope this finds you and your family doing well. How is your mom? You are all in my thoughts and prayers.

 

[Amy&Dan]

Hi Pearlie, Tracy and I must be on the same wavelength thinking about you. Hope all is well with you and your mom. Just wanted to send some good thoughts and hugs out to you.

 

[pearlieq]

Re-emerging again...

THANK YOU so much to everyone for the kind words, well wishes, and for checking up on me. You ladies are truly wonderful people.

Mom, DH, and I did make it to WDW. There were a few bumps, but on the whole we had a wonderful time and I'm so glad we went. I will try my best to post pictures as soon as I can.

If we had been off by a little as a week, we wouldn't have been able to make the trip as Mom's health continutes to decline. But the important part is that we were able to make it, and I still marvel at how the universe works.

Since we've gotten back her condition has progressed more and she's not doing so great. She developed her first skin wounds in Jan and now she's got 5, including a really severe on on her right calf. She's actually back in the hospital now trying to fight an infection in that wound.

She was in the hospital for about 10 days over Memorial Day. We met with the oncologist after that and she recommended Mom pursue hospice. She estimates Mom likely has about 6-12 months left, maybe a little more or less since things are unpredictable, but 2 years would be very, very unlikely.

She used to be very chirpy and make a point of saying that Mom's kind of cancer can be a chronic condition that could be managed over years. So it's disconcerting that she's putting out hard numbers now. Mom really isn't ready to accept the idea of hospice, which I wish were not the case, but I'm trying to be supportive. For my part, I swing between hoping the onc is wrong and praying that she isn't. That might sound terrible to some people, but I think anyone who has been in this situation would understand.

Mom's not really at a point where she should be alone anymore, so we've renovated our house for her to move in with us. That should be happening in the next couple of weeks after she gets out of the hospital. We were able to enclose our living and dining room into a sort of apartment for her and to make her her own bathroom, so I hope that will be enough space for everyone.

I'm nervous about it, if I'm being honest. Mom and I don't have the best relationship, even though we do love each other a lot. With all the medication and confusion she can be somewhat difficult to deal with. And I'm worried that instead of her living with us being easier, it will morph into 24 hours a day of servitude from which I can never escape.

My life really has become about Mom, for the most part. I dropped down to PT at work, which they were really nice about, but after that and taking care of her, there's not a lot left over. I'm struggling with that, since it really feels like my life is not mine and hasn't been for a while. But, for better or for worse, this too shall pass and I feel the need to see the situation with Mom through to the end and do the best I can for her.

So that's my life these days. I'm trying to look out for my health both because I need to be at my best and because I don't want to end up like her. I want to make an effort to journal again, but I know I won't be able to be as consistent about it as I would like. Still, I think it would be helpful.

I can't tell you how much I appreciate the caring and support you all have shown me. I hope someday I can return the favor.

 

[toystoryduo]

Sending a gentle your way, pearlieq. It sounds like you have a lot going on right now. I'm sorry to hear about your mom and the obstacles she is facing right now. I think it's wonderful of you to take her in and to help her through this. Please remember that you will definitely need to take some time for you each day and that your health is very, very important too. I'll be praying for you both.

If there is anything that we can do for you, please let us know. Always know that we are here for you, my friend.

 

[pearlieq]

7/13/09

9:30ish

--2c leftover tortellini & peas w/boursin
--sm bowl cherries

I've never been a traditionalist when it comes to breakfast. This sounded good and got me fed.

I figured that even if I couldn't journal perfectly, I could at least try to journal. I need to let go of perfect and focus on one good change at a time.

Today's been pretty quiet--just meetings at work and checking in with Mom. I'm going over to the hospital to see her tonight. She's got at least a couple more days while the IV antibiotics do their thing.

1:15pm

--BLT on Ciabatta
--sm handful tortilla chips w/ 1T ranch dip
--1/2 peach
--5 strawberries
--yogurt cup

Suprised I'm hungry again after a rich breakfast, but there it is. We got these ciabatta at Sam's this weekend and they're wonderful. I've been on a real BLT kick lately. I buy the pre-cooked bacon and add romaine lettuce and grape tomatoes. Tasty and easy.

DH and I decided to take a quick weekend trip to WDW for MNSSHP. I liked it so much the year we went. We're trying to do one weekend thing a month just to try to keep a pressure valve and some fun in our lives. DH is traveling M-F for work these days and I'd love to be able to tag along, but that's just not in the cards right now. So this is our substitute. I'm really looking forward to it!

 

[toystoryduo]

Woohoo!!! A fall trip to WDW! Sounds like a perfect weekend getaway to me!

Your food is looking good today. Keep up the good work!

 

[Lesli54]

Good afternoon, Pearlieq!

It is so good to see you back on the boards. I am sending you tons of and as you work through through things with your mom. It is completely understandable that your feelings and thoughts are on two sides of the fence. I think that is just human, especially when faced with major medical situations.

Even though you may not have much time, I do think that journaling what you can when you can will help relieve some stress for you so make sure to check back often.

Well, at least you made it through your quick renovations. Send some luck for mine.

At any rate, just try to take each day as it comes. Thinking too far ahead at this point can be overwhelming. It won't be easy all the time, but enjoy the good days as they come. I think that making time once a month to do something with your DH will go along way in keeping up your strength and resolve. If you need anyone to talk to, just know that we are here for you. I think that many of us has dealt with or been close to the same situation you are going through now.

Hope your day is a good one.

 

[Amy&Dan]

Pearlie, I am so glad to see you, but so sad things have gotten to this point.

First of all, its perfectly okay to feel as you do. I remember having those same feelings when they suggested hospice for my mom. Its not an easy existance, being a caregiver and just watching while someone you love is dealing with a terminal disease. And I've been there with feeling like my life is a vacum and a never ending stream of taking care of someone else with no happy end in sight. Just know that you are being a wonderful daughter and also know its always okay to feel the stresses and strains that brings into your life.

If you don't have much in the way of support, ask around at your mom's doctor about maybe getting someone into your house to help with cleaning, bathing and even someone to sit with your mom while you and your dh go out if you feel she can't be left alone. Oncologist offices generally have all sorts of information. I know ours turned me onto a social worker who became one of my best sources of information and assistance.

I am so glad you are journaling, we always love to see you. I am so glad you got to WDW, it sounds like the timing was perfect. Just hang in there my friend, there's never an easy way to get through this but you are strong and I know you will. I hope your mom will reconsider hospice. It can actually prolong life and the amount of support, care and pain management it brings to her life and yours is beyond wonderful. She'll come around soon hopefully on that.

I am so glad you are planning a trip during MNSSHP! That's about my favorite time of year at WDW and you guys totally deserve that.

I am saying lots of prayers for you and sending you some hugs too.

 

[Lesli54]

Thinking about you alot and hoping that you managing well. I know things are very stressful and very busy for you right now. Just know that you are in our prayers.

 

[toystoryduo]

Hi Pearlieq~

How are you, my friend? It's been awhile since we have heard from you. I hope you and your family are doing well. Please post an update when you can. We miss you!

 

[Amy&Dan]

I second what Tracy said Perlie. We really miss you and you stay in my thoughts.

I hope things are going well and hope to "see" you soon!

 

[toystoryduo]

Happy Thanksgiving, Pearlieq! How are you, my friend? I hope you are doing well. Please post an update when you get a chance. Have a wonderful day!

 

[toystoryduo]

Merry Christmas to you and your family, pearlieq!

 

[Lesli54]

Thinking of you and hoping that the holidays were good to you. Remember you and your family are in my prayers.