Day 27: Control

I talked to mom today. She sounded better than I feel she has sounded in the past 27 days. She was still exhausted and frustrated and not feeling well. But she sounded like herself.

And for a moment I thought maybe she was in a good enough place to reconsider ending her chemo.

But one of the first things she asked me was if I had talked to Michael. I told her I had and she asked me what he thought. I asked her, "about what?" and she said, "how he feels about me not doing any more chemo". And it was quickly apparent that she was still done.

We talked longer than we've talked in a while. She shared with me some more of her symptoms. Her hair started falling out today. She was told that probably wouldn't happen...but it's happening.

I guess Aunt Linda and Uncle Bill were supposed to visit today, but mom got sick after getting out of the shower and then was concerned what else was going to happen today so she cancelled the visit with them which I was sorry to hear. She said that after that episode, she felt fine and has felt fine the rest of the day.

And she really did sound like herself, for the most part. And it hit me. Maybe for the first time in 27 days, my mom feels like she has some control over her life. Maybe by choosing to stop the chemo, she has taken back some power over her own life. She knows that by making this choice she is choosing to die. But she is choosing not to partake in this chemo process. She is choosing to let her body do whatever it must do from here on out, without the interference of more drugs.

Don't get me wrong. I hate the whole idea of this. I hate the whole stupid cancer. And I hate that I can't stop any of it. But the bottom line is that it's not my body.

Mom mentioned that dad still doesn't agree. I told her to put herself in his shoes for just a moment. There is no good middle ground here. There is nothing good for any of us in this situation. My mom is dying. My dad is going to have to live without her. Neither of those are happy options.

I'm planning to go up there tomorrow. I told mom I'd call her before I left in case she wasn't feeling well. But hopefully we'll make it up there tomorrow.

Thanks to Julie and Mary, I am covered for childcare on Monday so I can go to the Oncologist appointment with mom and dad.

And so now we start moving forward again. It's a different path. It's a terrifying path. And, sadly, it's probably a short path. We'll get more of an idea of all of what is coming on Monday from the Oncologist.

I don't want to walk this path. I'm finding it hard to simply put one foot in front of the other. But if my mom is walking it, then I will walk it with her. I owe her that much.

Day 26: No More

~ For those of you who are family and friends who are reading this, please don't share this blog post with mom and dad. I don't know how much they're wanting this word to spread right now, but I need to get it out for myself tonight ~

As of today, she's done with chemo.

I called for my daily check in today. Dad was obviously upset. He said that things weren't good. He ultimately couldn't tell me and put mom on the phone. She told me through tears that she was done with chemo.

Again...another punch in the gut.

But the first thing I told her was that I would support her in whatever decision she needed to make. I told her that I have never wanted her to do chemo for anyone but herself. She told me that meant a lot to her. She was very scared and sad. She's experiencing new symptoms and she just doesn't want to do it anymore. How can I blame her for that? How can I insist she keep fighting when I'm not living in her body?

But dammit I want to! I want to convince her to fight. I am terrified right now. I'm not ready for this.

But ultimately it's not about me.

Dad is devastated. He was obviously very upset. After mom couldn't talk anymore, dad got back on the phone and I told him I was sorry. I asked him how he was. And I could hear his voice shaking. He said, "I guess it doesn't really matter how I feel." I told him it mattered a lot how he felt. He then said, "I guess I'm just being selfish. I just don't want to be alone." I'm in tears typing this right now. My parents are both hurting so much. My dad feels so powerless throughout this. He's been fighting right alongside mom and he's frustrated that she doesn't want to fight anymore. I understand that. I totally understand his perspective. But I also understand mom's. And there's simply just no middle ground.

So, mom and dad have an appointment on Monday with mom's Oncologist. A part of me wants to hope that he will tell her something that will convince her to go forward with the chemo. Mom's emotions go up and down every day and some days are better than others. Perhaps when she has a better day, she'll change her mind. She doesn't have another chemo session scheduled until the 24th. But tonight, she really sounded done.

And so my head is spinning. I had to observe another instructor tonight and my head just wasn't there. I don't want to work. I don't want to function as a normal human being because I don't feel like a normal human being. And yet, I keep pulling it together. I feel like I'm on the edge of a cliff and just one step and I will completely fall apart. I feel like if I even let anyone else in to help take care of me, I will completely fall apart and there will be no return. I'm pushing people away. I'm pulling it together. I'm taking care of others. That's what I do. But inside of me, it's bubbling up...I can feel it. And I keep fighting it. Because I have to. But, believe me, there is a huge part of me that just wants to let it happen. And I wonder when it will all hit. And it scares me.

But so much scares me right now. I'm not ready to lose my mom. I'm just not. It's been 26 days. 26 days! I'm not ready for this. I'm not ready for hospice and morphine. I can't stand the thought of my mom suffering. I can't stand the thought of living without her. Yes, I know parents die. But not yet. It's just not supposed to be yet. How do I live in this world without my mom? I don't know how to do it and I don't want to.

As of today, my mom has stopped taking steps forward. As of today, each small goodbye means even more than before. I want to believe things will change. But if I live in today, I have to face this decision. No matter how much I don't want to.

Day 25: Up and Down, Back and Forth

That's basically what dad told me that he and mom are feeling these days. Don't know which way they're going half the time.

Today dad is dealing with the whole potassium thing. He picked up the medication from the hospital pharmacy, but the pharmacist mentioned that one of the water pills mom is taking for her blood pressure actually holds on to potassium and they're trying to reduce mom's potassium level. So, then dad spent time trying to research the cancer center and find out if mom is supposed to take that water pill while they're trying to reduce the potassium or not. He didn't have an answer yet when I spoke to him about a half hour ago.

On top of it, the one thing that mom has been able to ingest is orange juice. She's drinking bottles of orange juice all day. But orange juice is full of potassium. So the one thing she can actually tolerate could actually be causing her more problems.

It's just a constant struggle to even things out. Dad mentioned to the nurse that mom is really tired and constantly cold and the nurse said that both those things are, unfortunately, side affects of chemo. It's just all so frustrating.

Although for now, mom's stomach doesn't seem to be bothering her as much so I'm hoping that's a positive sign that maybe the chemo is actually doing something for it. Only time will tell I suppose.

This is mom's week off of chemo...we'll see how it goes. It would be great if she could have a week without a hospital visit. Although I wish she could feel better to actually enjoy her time off. And I'd like dad to have some down time too.

But I guess we all just keep putting one foot in front of another...and keep up hope that things will improve.

Day 24: Easter

We had a lovely Easter today...outside of the drenching rain anyway. :-O It was simple and easy with lots of laughter. Well, maybe mom didn't laugh as much as the rest of us...she was very tired...but she seemed very happy to have us all there.

We only stayed for about 3 and 1/2 hours and I'm sure mom went to bed as soon as we left. But we did leave dad a bunch of food so hopefully he'll have some variety in his diet for a few days.

Mom at about 1/2 the sugar free pumpkin pie that Kiersten made for her. She had some fruit, a couple of radishes and even a few potato chips (her former vice), so it was all better than nothing.

Dad brought me into another room and showed me how he has organized all mom's medications. He showed me how to use her glucose monitor and also showed me where he keeps their will and other pertinent papers. I think he just needed to know someone had this information. He mentioned to Kiersten on Friday that he's a little worried about what would happen to mom if something happened to him. So, I don't anticipate needing to know any of the above information anytime in the near future. But if it eases dad's mind then it's worth knowing.

I also brought my ipod and voice recorder and just turned it on in the corner of the room. Mom didn't talk a lot today but dad shared some fun stories and I've downloaded the recordings just to listen to someday in the future. I'm really glad I bought that thing. I plan to get a lot of use out of it!

I hope everyone had a very nice Easter surrounded by those you love!

Day 23: Distraction

Today was all about distraction for me. I taught a one day childbirth class and was at the birth center from 7am - 6pm. Then Olly and I went out to dinner to celebrate his birthday a little early. I'm just now getting home and settling in for the night.

I did talk to mom and dad today though. I don't always get the opportunity to talk to mom because she's either too tired or sleeping, but tonight she sounded pretty good. She still can't eat much of anything. She says she's down to ice cream now. I told her there could be worse things. ;-) She's still incredibly tired too.

Dad told me that last night the nurse from the cancer center called to tell them that the doctor had prescribed a one time pill to bring mom's Potassium level back up. Dad called in the prescription to Costco and then got a call from Costco to tell him that to fill the prescription would be over $300!!! Turns out it's a very rare medication and not too many places stock it, so Costco would have had to buy an entire case and would have had to charge dad for it. So, he called the 24 hour line at the cancer center and they told him to try and fill it closer to the hospital. He asked if mom needed the medication this weekend and was told it was okay to wait a few days, so he's going to try and fill it at the hospital pharmacy on Monday. Craziness! My dad is working sooooo hard for mom!

We're headed up for Easter tomorrow. Poor little Gus has a cough and so Michael and Kiersten are trying to figure out if they can bring him or not. They want Gus to see mom, but they also don't want to make her sick. It's all such a hard situation right now! Everything is so different. Things we never had to consider before are now top considerations.

And even with all the distractions today, I find my mom permeates all my thoughts. I'll be teaching something I've taught over and over and she'll pop into my head. Driving to work early this morning, I was passing all the cherry blossoms in bloom and burst into tears because I was wondering if my mom would ever see another cherry blossom blooming season. I look at everything that way now. If I'm to find the positive in that, it is that I now see the world through different eyes and that is a good thing. But I want mom to see the world. I want her to see everything for a long time to come.

I want to believe this won't be mom's last Easter. I want to believe that next year, I'll still be blogging and be on blog #388 and joking about how we were worried that this year would be mom's last Easter. I really want to believe all that. But I worry that's being too overly optimistic.

Right now I just need to take each day, each holiday, each family celebration one at a time. I turn 40 in 19 days. I was really looking forward to a big birthday celebration this year. I've been looking forward to 40. But now I just want my mom to be around to see it. That's simply all I want. 40 years ago, she gave birth to me and her whole world turned upside down. 40 years later, I'm facing losing her and mine is turning upside down now.

But for now I'll try to focus on tomorrow and Easter with the family. Doesn't look like any of the grandkids will be there which is kind of sad. But at the same time, it will probably be a quieter day for mom as well. It will be good for all of us to be together. It's been a long time. Too long.

I wish you all a wonderful Easter holiday surrounded by those you love!

Day 22: Round 2

Mom had her 2nd dose of chemo today. Michael and Kiersten went with mom and dad. It all seemed pretty routine from what was relayed to me.

Mom's Oncologist has been gone all week so the back-up Oncologist that met with mom this week didn't really get into anything with her. There didn't seem to be any more discussion about her kidney function or anemia or her stomach swelling or her nausea or anything.

That all drives my type A personality crazy. I mean mom doesn't get chemo again for 2 weeks. A lot can happen in 2 weeks. A LOT has happened in the past 3 weeks. I guess I just would have liked some more answers. But I want lots of answers to questions that may have no answers. I guess I'm just really frustrated. What's new?

Tomorrow I teach all day. That's probably a good thing. My boys are at their dad's and I hate not having them around. I can't get my mind off my mom. Teaching all day will probably be a good distraction. But right at this moment, I rather like the idea of having a day to sleep in, but it doesn't seem that's in my near future.

Sunday, Michael, Kiersten, Olly and I are heading up to mom and dad's for a quiet Easter. I'm bringing my new voice recorder and plan to just set it up in the room and hope we have some laughter and tell some stories. I'm just hoping mom is feeling okay and can enjoy the day a little. If nothing else, dad will get a meal that he didn't have to put together for himself. :-)

I want to say Thank You again to all of you who have been in touch and been letting me know that you're thinking and praying for me and my family. Word seems to be spreading and I'm hearing from a lot of people and it truly means so very much to me. I'm sorry I haven't been very good at replying individually, but I truly appreciate every one of you. Your thoughts and prayers are what is getting me through. I feel your support and it means the world to me.

And now we move on to week four...still working on taking things one step at a time...one moment at a time...as each moment seems to hold something new.

Day 21: Three Weeks

21 Days. 3 Weeks. It seems like so short of a time, and yet it almost seems like my entire life.

I talked to dad a little bit ago and he says that mom is nauseous. I was surprised by this and asked him when it started. He said that she's been saying for a while that nothing sounds good, but that he's now figured out that "nothing sounds good" translates to "I think I'll throw up if I eat". I asked if that started before or after the stomach draining and mom said that she doesn't really know...that when her stomach was so large, that's all she could think about.

Dad has started mom back on her anti-nausea pills. But this really scares me because the reason mom chose to go forward with the chemo was because people told her it might make her feel better. If it doesn't start making her feel better soon, I think she'll be done with it. And I can't say I blame her. Granted, she's only done one dose, but she's so tired and has so many other side affects and symptoms. I don't know...it just seems that there's been more bad news lately than good news. And I get off the phone discouraged and in tears. And I wonder what it's like at mom and dad's house. What kind of conversations are they having? How is my dad holding it together? He's working SO hard. And he's doing such a great job. But I worry about him too.

I've found myself with a terrible headache today. I rarely take anything for headaches, but today I just might have to. I teach tonight and in this condition I can't even think straight.

I'm feeling things are really wearing on me. And I have started finding myself falling apart at weird random times. I'll simply be driving down the street and will burst out in tears. My patience is so much shorter than it should be and I'm working on that...but I feel like there is a clock ticking in my head. I feel like time is running out and I can't stop thinking and thinking and thinking. My mind is constantly racing.

More and more people are finding out about my mom. I have friends and clients I haven't talked to in a while who are just finding out and I'm getting texts and phone calls and e-mails and facebook messages and it feels so good to have so much support. It's kind of overwhelming how many people are out there and care about me. It really has touched my heart.

Last night I talked with one of my clients who had her baby in January. She's an Oncology nurse. She sat on the phone with me for 45 minutes last night and just let me spew out all my thoughts, hopes and concerns. She simply listened. And then she made some really good suggestions that I needed to hear. It was just good to talk to someone who really does understand this. And also who knows me just a little. I appreciate so much all the people who are taking time out of their own lives for me right now.

Oh...and an update on the stomach draining...I finally got an answer around 5:30pm last night. The longer version of getting mom's stomach drained won't work. I guess it's okay if there isn't cancer involved, but because all of mom's stomach fluid is cancer filled, the option the Radiologist mentioned on Tuesday won't work. They did say that mom can have another liter and a half drained whenever she needs it though so I told her not to wait next time. She doesn't need to suffer with it.

So, tomorrow is round 2 of chemo. I really want to be there, but I'm letting Michael take it tomorrow. It will be good for him to have some time with both mom and dad. Kiersten is going to go too and I know it will be good for her as well. She's really feeling like she needs to see my mom and so tomorrow will hopefully be good for all of them. But I really still feel so protective and feel the need to be there. Is that an oldest child thing or just me being over protective?

But I've managed to plan a busy day tomorrow to keep my mind somewhere else if possible. The boys and I are going to see the new Hannah Montana movie (anyone want to keep me company??? Ugh...) and then color Easter eggs afterwards. They're going to their dads this weekend so I won't have them most of the day on Easter so want to do a little pre-Easter celebrating. I teach all day Saturday which is going to be a long day...but again...I guess it gives my mind something else to do. Michael and Kiersten and Olly and I are planning to converge on mom and dad's for Easter Sunday. We'll just have a simple, buffet style meal. We just all want to spend the holiday together though. In all honesty, we don't know how many more holidays we'll have together and we just want as many as possible. I'm still regretting that I didn't spend Thanksgiving last year with them. And I hope it wasn't my last chance for a big family Thanksgiving. I know...regrets are useless...but I still have them.

So, please send out thoughts and prayers for all of us tomorrow as mom goes through round 2 of chemo. They all mean so very much!