Sunday, October 31, 2010

Visit from an old friend

I'm going to try and keep it simple today - I just have so much packing and planning to do. The kids slept in fairly late...which was especially nice because I was up all night.

As I was getting ready, I asked DH to help me find the ipod. Micah started yelling "Mommy, ipod" and he reached up to the counter and grabbed the ipod. Yes, you know you've allowed your child too much access to technology when "ipod" is one of the few words he can pronounce perfectly.

I met my best friend for breakfast at the pancake place at 10 (it is one of our favorite restaurants, and we love to order chocolate crepes and strawberry crepes and share has been our tradition for many years now). My father showed up just before we were seated...he was kind enough to drive down and bring me my cell phone!

After brunch, Maya and I drove up to the nursing home. It was an easy ride, and we arrived right around 12:30. My brother, Paige, Peyton, and a family friend (who was in town visiting from California) and his father were already with Mom. We stayed in her room for a few minutes, and then we relocated to the cafe where we had more room to sit and chat. As usual, the family friend brought another delicious smoothie for my mother...and the girls ended up drinking most of it. A resounding hit!

The girls ran around, played with Maya, and had a fantastic time with their "Uncle." It was his first time meeting Maya...and I would say she did the requisite flirting.

I got a text from DH- he had taken Micah downtown for a rally, and he thought a few of the signs were funny. He said it was unbelievably crowded - more so than almost any other event he had ever attended before.

Dad showed up while we were in the cafe, and we spent some time together. My brother and the girls, and our friends all left by 3, and my father and I returned Mom to her room. My mom showed me a cute little mug that her childhood friend brought over this morning - thank you! It has a great photo of mom from her birthday party, and it says Happy 65th on it.

Dad left a little while later, and I hung around to do our facial cleaning routine, nurse Maya, and give Mom some time to play with the baby. Maya and I took off on the early side (around 4:30). We got home around 5:30, I fed Maya again, and then DH, Micah, Maya and I drove for a quick visit with our family friend's grandmother. We didn't stay very long - we were back home by 7. We watched a little tv, played a few games with Micah, and then bathed the children and put them to bed.

Good news of the day...we now have a new key for our rental house. Tomorrow is going to be a bit crazy...we need to get up to Mom on the early side (Dad is unable to go there tomorrow because he is working) so we can get back in time to take the kids trick or treating. If you are thinking of going to visit Mom, any time is good, but she could especially use a little extra company in the morning (before lunch) and later in the day (we'll probably have to leave by 3). I hate leaving her alone for so long, so I'm hoping she'll have lots of company to keep her occupied.

Mom will be home in six days.

Uh is 2:30 and Micah is screaming for Mommy. I wonder why he wakes up...bad dreams? Teething pain? Not a good night. Probably because I'm trying to post early, pump early and go to bed early. Let's hope DH can get him back to sleep.

Saturday, October 30, 2010

Peyton's Birthday Dinner

Another good day! Maya was up nursing early, but Micah stayed in bed until 8:30. We were downstairs waiting for the babysitter by 8:45. Micah was quite grumpy today...he started crying every time I made a move toward anything that looked remotely like an object I might need to prepare to leave (keys, my purse, shoes, etc.).

I was supposed to meet my father over at the new house so we could take some measurements. Unfortunately, we spent most of the morning searching for the keys to the new house. I am 100% certain about where I put them, and they are no longer there. I'm a creature of habit...I always put things in certain "designated" places. I do that (and refuse to let myself come up with new locations for things because I never remember those new and creative locations). So, important papers go in one spot, keys in another spot, etc. I do have 1 "dumping" ground...if something is "misplaced" it is always in my dumping ground. So, today I searched for the keys in my usual places - where I keep keys, my important papers pile and my dumping ground. Then I searched everywhere else. We took this house apart, and we cannot find the keys anywhere.

Since they are missing, it means one of several things happened. 1) DH took them and moved them (or thought he'd take them to the store to make copies and forgot that he stuffed them in something). 2) My father saw them and grabbed them and put them somewhere for "safe keeping" and now doesn't even remember that we ever told him the keys were here. (Definitely a plausible scenario, except my father has only been here once since the keys arrived, and I really don't remember showing him where they were). 3) Micah spotted them, grabbed them and started playing with them (he is obsessed with keys) and put them somewhere...possibly even the diaper pail, his new favorite toy. 4) Perhaps the landlady took them back. I noticed when cleaning that she took the wrong copy of the lease - it is possibly she snagged both my envelope and the keys at the same time. I am fairly certain I checked for the keys since she left (and saw them) but maybe I didn't.

After we gave up looking for the keys, we had a lot to do. I decorated a cake for Peyton's birthday, I straightened the house, I played with Micah, I nursed was a bit crazy. The babysitter took Micah outside for a bit to play with bubbles, helped feed him lunch, and then we put him down for an early nap. She took care of Maya while I showered and dressed and got things ready for us to leave.

I heard that friends were visiting my mom today. I'm sorry I missed them! It was too hard for us to figure out how to get everyone up to the nursing home today early and make it through to dinner, so we just decided to drive up after Micah's nap.

Surprisingly, we made it out the door on time at 2:30. DH asked to detour by his office to pick up his new cell phone. I had no idea that the little detour would end up making our trip 1 1/2 hours long! We did not arrive at the nursing home until 4:00. I ran upstairs, helped my mom finish getting ready, and we headed out for dinner. We were downstairs loading her into the van around 4:20, and we arrived at the restaurant around 4:50.

We had to wait for a few minutes while they set up the tables, but we did finally get seated. SIL and the girls arrived right on time, and my brother arrived a short while later. Dinner was lovely! The kids, of course, ate nothing, and the adults ate way too much. Mom and I shared food...we had gnocchi and eggplant parmesan, and it was very good. Dad also had eggplant, DH had a delicious pasta with a tomato, garlic, artichoke, spinach and tomato sauce. SIL had a cheesesteak, and to be honest, I have no idea what my brother ordered. We ordered Micah spaghetti and meatballs...and he wouldn't even look at it. The girls had a little pasta, a little gnocchi, a little spaghetti...but mostly ate bread. Micah drank water, and then was throwing a fit. We ended up just playing some Elmo on DVD for him. I know - terrible habit. We cannot just use Elmo every time he misbehaves...but it was so much easier to keep him entertained than cut the dinner short and leave.

Around 6:15, we decided to serve the cake. Peyton had a huge grin on her face as she blew out her candle. I had made her an Ariel doll cake (with a real Ariel doll), and she was thrilled! Now, if I had only remembered to bring the doll's pants and accompanying play toys that I left in the box at home, that would have been a good thing.

Peyton opened her presents and then it was time to say goodbye. We loaded up the things first (leftover food, diaper bags, etc.) and then we took Mom outside. It was freezing!! It took us a few minutes to get her in the van and lock everything in place (including the children). My brother, SIL and the girls said their goodbyes, and Mom, Dad, me, DH, Micah and Maya headed back to the nursing home. I had DH just drop me, Mom and Dad at the front door and head home with the kids. Dad and I took Mom upstairs, got the nurse, and had them give Mom her medications and get her ready for bed.

Dad and I stayed with Mom for another 40 minutes. We took some time to do our "daily routine" - I get a washcloth and take some of Mom's Albolene (a cream cleanser) to rub all over her face and then wipe it off. I then take the cream they gave us at the hospital and rub it all over her face and head. Since we've been doing this routine, Mom has felt far less itchy and her skin is looking much better. I love our daily routine, and so does she. Every day, she tells me that she cannot wait until I get my hands on her.

Tonight, we talked about how this will be our new nightly routine when we go home. She said she looks forward to creating good happy routines for us to remember. I told her that I already had plenty of good happy memories of her, but that I was looking forward to creating many more.

I was impressed that Mom made it to 7:00 without so much as a yawn. I think she has been going to bed early out of boredom. Dad and I left together, and I drove him home to our house. He said he was tired and did not feel up to driving. I didn't mind at all, and we had a nice chat in the car. We got home to two screaming children!! I went upstairs to help DH, and brought Maya downstairs. While my father waited, I changed Maya into her pajamas and started to nurse her.

Dad waited for DH to come downstairs after putting Micah to bed, and he asked him a favor then left for the night. He told me he was tired and going home. No surprise, but Dad called a little while later to tell me that I forgot my phone in his car, and he was driving back down to give it to me. I told him not to bother, that I could wait until the morning to get my phone from him. I realized Dad was in the car, and asked him where he was. Much to my surprise, he told me that instead of driving straight home, he detoured to the post office out by the College. I could have strangled him!! He kept insisting that it was "on his way" home (yeah...about 10 minutes further north than he needed to go, and then another 15 minutes home). I was so angry that he did all that extra driving on a night when he told me he was too tired to be driving very far! There was just nothing so urgent at the post office that could not wait until the morning (and I know he told me he had stopped at the post office earlier in the day, too).

Right after I "yelled" at Dad, Mom called me to tell me she was having a good night so far. It was nice to hear from her. A few minutes later, she called back to tell me that the battery on her book had died. Naturally, I told on Dad, too, and Mom was not happy he had done extra driving either. So, I called Dad back to ask him to ask if he had any more batteries at home (ours are all rechargeable, so they just do not last as long). I also made sure he knew I tattled to Mom about his driving which point he realized he shouldn't have been doing that driving. So, Dad, no more running stupid errands when you are exhausted!! Now, I've tattled to everyone, and he'll be very unhappy when he reads this :).

Mom just called...I had to race through the house to find a phone that was such luck. I called her back, and she is doing well - up for the day and getting ready. We'll head there around lunch time, and she has a few visitors planned.

Friday, October 29, 2010


I'm finding it harder and harder to do this same routine everyday, especially now that radiation is done. It almost feels like the rigidity in my schedule is gone now that radiation is complete, so every day I "play" with the time I need to leave for the nursing home.

Thursday was a tough morning...Micah woke up screaming "Mommy!" around 6:00 am...just as I was starting to fall asleep. I don't know whether he had a nightmare or if he was hurt, but he was loud and scared, and I needed to go upstairs and sit with him. After 30 minutes, I realized he was not going to fall back asleep. I decided to bring him into our room - I was hoping that sitting in the dark and cuddling with us would encourage him to sleep...but no such luck. Instead, he woke the baby up early, and DH eventually had to take Micah downstairs for an early breakfast.

Micah had preschool again today, and we ended up sending him with Megan. DH had a work function, and I planned a class with Maya (and our cousins Jodi and Layla, and our friends Ellen and Abigail). Maya and I met Jodi and Layla for an early lunch first at 11:00 to catch up, and I would have had to leave preschool a bit early to make it there on time. Since I was afraid of Micah crying and becoming inconsolable if I tried to sneak out of preschool 15 minutes early and swap with Megan, I decided it would be easier for him if Megan took him instead.

Maya had a great time at class! I think she is a little young still for class to mean anything to her yet, but the singing and the toys made her smile. I think Micah was about 6 months old when I enrolled him in his first class, so perhaps next semester I'll start Maya in a regular class. After class, Ellen had to run to pick up her son, Max, and Jodi and I stopped for a cupcake.

After class, I got in the car and headed to the nursing home, but it was almost 2:30 when I finally arrived. My mother was supposed to be in therapy, but when I got there, the therapist informed me she was unable to find my Mom at 2:00 when she went upstairs. I sat with her for a bit and reviewed different equipment options, and then my parents walked through the door. I guess my father took my mother for a walk and the therapist was unable to find them. It was too late for therapy at that point, so we all went upstairs.

Mom continued to sit in her chair for a few more hours. We talked, we looked for her ipod (it went missing again yesterday, and we still can't find it). Mom asked me to flip a glass upside down (my grandmother used to tell us that if you turn a glass upside in your cabinet when you lose something, you'll find it), so I sent DH a text to flip one over. Hopefully, the glass will help us find Mom's ipod tomorrow.

I called SIL to wish Peyton a Happy Birthday, but she was sleeping. While I was on the phone, SIL's brother and sister-in-law came by to visit Mom. It was so great to see them! They stayed and chatted with Mom for about an hour, and we had a great visit. They couldn't have come at a better time...Mom was upstairs, dressed, in her wheelchair and feeling great.

After they left, we took Mom back to her room and my father headed home. I spent the afternoon trying to deal with getting her blood test results faxed over to the hospital. Apparently, her platelets have dropped again (down to 62,000 from 110,000), which is a normal side effect of chemotherapy. I spoke to her medical oncologist, and he said their goal is to keep her platelets over 50,000, so I believe we just need to watch and wait. She will need to continue getting her blood draws, and they will not be able to start her monthly oral chemotherapy until here counts recover. What concerns me more now is that my mother is also anemic again, and I'm not certain if anyone is monitoring that. It was such a severe issue a few months ago, and I'm concerned again. I gave my father a copy of the blood work, and he will be having my mother's hematologist review the results in the morning. It may be that my mother will need another iron infusion again, too, but I hope not.

I finally left around 5:30 - a short visit for me today. I made it back just in time for our meeting with the architect. We now have 2 bids from 2 different contractors, and we need to choose. We thought we had already committed to one of the contractors, but our architect decided to solicit a second bid from our original contractor (whose price kept increasing during the planning phase). Both contractors are good, and their bids are competitive. One of them is more likely to function on time, and the other is likely to be a little less money. Both will do good work. I kind of feel obligated to one of the contractors (since we did tell him we planned to go with him and that the job was his), but we have not signed anything with either one of them yet. Either way, one of these contractors will feel screwed, and I think our architect might have handled this situation badly with both of them.

Micah was very funny tonight with our architect. He kept pointing to his shirt and talking, and the architect asked me what Micah was saying. I listened for a minute and finally realized that Micah was saying "there is boo-boos." Our architect had a shirt on with several snapshots of Renaissance art, and a few of the paintings had exposed women's breasts, and Micah was just simply pointing out that the women on his shirt had "boo-boos." I couldn't stop laughing...Micah sure does love to identify body parts!

As you can see from the naked doll in the last picture, Micah is still enjoying undressing the doll and putting her diaper in the diaper pail:

Peyton called to talk tonight...and DH and I had a chance to sing Happy Birthday to her (and so did Micah). No calls from Mom again...another quiet evening. I hope me teasing her about her 4:00 am calls didn't make her worry about calling me...I miss having the phone ring all night/morning and talking to her. I somehow don't think she would appreciate a 4:00 am call from me right now, though.

Today we will be heading back to the nursing home, but probably on the late side again. We will be bringing both kids and the van, because tonight we will be our family celebration of Peyton's birthday! DH and I made her an Ariel cake (okay, tonight DH baked the cake and I will be decorating it in the morning), and we'll post pictures of that tomorrow.

Mom will be home in 1 week.

Thursday, October 28, 2010

Moving Time!

I think the panic over all I have to accomplish in the next nine days is starting to set in...we are moving to our "new" rental house on November 4th, and Mom is coming home on November 5. I'm excited, but have no idea how to pack everything up and get it ready for moving.

Today felt like a lazy day...Maya woke up around 8 and I crawled into bed to nurse her. Micah was still asleep, and I had some time to doze a bit. I guess I must have fallen asleep for a while, because I woke up startled at 9:12...and realized that Megan, the babysitter, must have been trapped outside. I realized that the phone line to the house must not be working again...because I definitely did not hear the phone ring from Megan or my Mother. I quickly sent DH downstairs to let Megan in and find a phone.

Turns out, there was nothing wrong with the phone line...just several dead phones. I called my father, worried that I had not heard from my mother since early the night before. He called the nurse's desk to check on her...and all was well. My mom called a bit later to check in, and she sounded great. She told me that she had an appointment at 1 for therapy, and we were wanted at the session.

Dad and I had been given specific assignments by Mom...she wanted chicken salad from Panera and she wanted salad and breadsticks from The Olive Garden. I guess Dad was a bit on the late side arriving with the chicken salad from mom had already started to eat her lunch (hey, it was in front of her and she is taking steroids...the woman will eat ANYTHING the minute you set it in front of her these days!!). Apparently, she polished off her hospital meal...and then ate the chicken salad, too.

Today was Mom's first day without radiation/chemotherapy! Unfortunately, it was kind of a rough day for Mom. I arrived at the nursing home just as Mom was beginning her therapy appointment. I had hidden the salad and breadsticks to save for later, but she definitely asked about them when I arrived. We watched Mom do her exercises, I spoke to her occupational therapist about equipment options for the house, and then we watched the physical therapist demonstrate how she has been working with Mom to do the transfers. Mom has been doing most of the work with her right side recently, but still needs a lot of assistance with her right. Her physical therapist demonstrated the transfer...but Mom seemed too tired to help much. They worked on sitting up straight, but Mom couldn't seem to lift her head straight for anything. She kept flopping over...and then out of nowhere, she became nauseated and threw up.

I was pretty surprised...she made it through 6 weeks of chemotherapy and radiation without any nausea, and then suddenly, today, she started to vomit. She threw up a couple times in therapy. She lay down, and they had her do some leg exercises before returning her to the room. She threw up two more times in the room. I started to worry we were dealing with another brain swelling episode, but Mom insisted that she did not have a headache or any other symptoms. We talked to the doctor about getting some Zofran for her...but she threw it up immediately. They gave her some composine, and had to give her the steroids via IV today. I called over to the hospital, and ended up speaking to a fairly grumpy PA who told me to take her to the hospital.

We then had a dilemma...should we take Mom to the hospital or not? I knew that if we were dealing with a brain swelling issue, the hospital was the best place for Mom. But, if it turned out to be bad chicken salad (or the fact that she over-ate at lunch), then we would likely get to the hospital and be released. Unfortunately, we were told that we would lose the bed at the nursing home if we could not be back before midnight. With only a few days of rehab left (and after everything we went through with the transfer/evaluation time), I knew that if we lost the bed at the nursing home, Mom would not be able to complete her therapy. Without another 3 day hospital stay, insurance might not approve another visit back to rehab...and with only a few days left, there would not be enough time for Mom to go to a new place or wait for a new bed at the nursing home and get anything useful out of rehab. I was quite torn about what to do. At this point, it was after 4:00 pm, and Mom was feeling better. We decided to wait and see if she threw up again before going to the hospital.

Mom thought it could just be from over-eating...apparently, she kept saying she was full, and Dad wanted her to eat the chicken salad he had just picked up for her. Mom's intention was for Dad to pick up a big container of chicken salad for it to sit in the fridge and be available for her to eat over the course of several meals if she did not like the food on the tray. I guess my father did not understand this, and in his head, he was focusing on the fact that he brought her lunch for today and the nurses want her to eat 75% of her lunch before they'll give her insulin...but all he heard was that she should eat 75% of her lunch. I guess it did not occur to him that she is not REQUIRED to eat 75% of her lunch at all, she just will not get her insulin if she doesn't eat, and that 75% means 75% of her food tray, not 75% of everything that is presented to her!

By 6:00, Mom was feeling much better and decided to eat some dinner. Her nurse from the hospital finally called back (he apparently was at an appointment and missed the earlier page). We gave him an update, and he said that he thought we made the right decision. He suggested that we ask the doctor to give Mom a bag of IV fluid just to be safe. We requested it...but my guess is that they did not administer it. After talking to the nurse, we decided to leave because Mom seemed fine again (and we were fairly certain she was sick from either the chicken salad or simply over-eating). We asked the staff, Mom, and her aide to call us if she got sick again, and we spoke to the floor doctor and indicated we would probably want to move her to the hospital if she got sick again.

I made it home around 7:30. We had already canceled our appointment with the architect, so my evening had freed up a bit. Micah and DH had gone to a work event for DH, and were well-fed. Micah was rolling around on the floor when I walked in and excited to see me. We had a nice evening, and Micah was just being so cute.

Tonight, we had our mover come by to survey everything and start planning with us. He is great...and he is probably thrilled to have met me 12 years ago. In that time, he moved both of my grandmothers...twice, me seven times, and I have recommended him to a slew of friends. Dad called to check on Mom around 8 and all was well. Micah went to bed easily at 8:30 after the mover left. Maya was a bit more challenging...she was nursing and napping, but just did not want to go to her crib. We tried putting her in the swing...she woke up. We put her in the crib...she woke up. I nursed her again...and she woke up. It was after 10 again before she finally was in her crib and asleep for the night. In the middle of our bedtime struggle with Maya, Mom called me at 9:30 to tell me she was feeling well, and she called Dad around 10:30. So...I think we can blame the chicken salad (although I think Mom is blaming Dad for forcing her to over-eat).

I'm not even sure where to begin with moving this time. Everything is such a mess, and I cannot figure out how to get it all ready. I need to be sure not to move the mess - the last thing we need is boxes of crap all over the place in a new house. Some of the things will be quite easy to move, but other things...

Our current plan is to bring over some basic things on November 3rd at night...a pack 'n play, some toys for the kids, and maybe some of the food stuff. On Thursday, November 4th, I think I'll send the kids (or at least Micah and Megan) over there mid-morning to play, have lunch, and take a nap. We'll spend the rest of the day moving. I'm hoping we can make the move fairly easily, without disrupting Micah's schedule too much. On Friday, November 5th, we'll just drive up to the nursing home and bring Mom home.

Wish us luck!

Wednesday, October 27, 2010

Ringing the Bell

It was a beautiful day today, especially at 2:15 pm as the sound of bells and chimes and alarms and phones and horns rang out all over to help Mom celebrate the end of her radiation journey. We received posts on Facebook, emails, texts and calls of support all day long, and my mother spent most of the day grinning from ear to ear. One of my favorite texts today was this one (thanks, Emily):

Maya woke up early to nurse, but Micah slept until 8:30. We got Micah dressed and ready, and DH took him to preschool while I stayed behind to get organized for the day. I also made arrangements for us to move next week...but I'll panic about that another day.

By 12:30, we had the kids dressed, fed, and ready to go. We let Megan go early today, and the four of us drove up to the hospital to meet the family. We all arrived around the same time...SIL and the girls, my brother, my parents, and us. We went downstairs to the waiting area, and things were running on time. My mom looked lovely in her purple jump suit and her beautiful new hat from Donna (her nurse from the hospital). A few minutes later, we headed to the waiting area in back and took it over. The waiting area sits directly across from the room where my mother receives radiation.

The radiation tech came out to get Mom and bring her into the room right on time at 1:45. All of us went back into the room to watch the set up. My brother snapped a few photos, the kids watched Mom get on the table and have her mask snapped down, and we got to see them position her in place. We went back to the lounge for the next few minutes while they turned on the machines.

During radiation, Micah, Paige and Peyton ran around and played together. They were very sweet together, but Peyton showed Micah how to work the water dispenser...and that is all he wanted to do after that.

Right around 2, Mom's radiation was finished, and we were able to go back into the room as they took her off the table, returned her to the wheelchair, and wheeled her out to us. We brought her over to the bell, and got her ready to stand and ring the bell.

The bell is a long cylindrical tube that hangs from a hook. Instead of a chain, it has a mallet that you use to strike the bell. Mom kept saying it was more like a gong than a fire bell. To the right of the bell was a plaque with a beautiful poem about striking the bell:

"Your day has come to strike the bell!
Your silent heart has much to tell
and much to toll this proud new day
treatment done, you're on your way.

Dad wanted to be the one to stand next to her and support her stand. Mom stood tall holding on to Dad, reached for the mallet, joked with Dad as she pretended to strike him by "mistake" and then she let it rip...she rang the bell again and again and again!
She was cheering, we were cheering...even Micah let out a loud "YAY!" for his Grammy. It was a wonderful moment, and we were all so proud to be there. We had quite the audience...the radiation techs, the entire family, Donna, the transport driver, and even the doctor stopped by to watch! A few of our visitors showed up as Mom had just finished ringing the she grabbed the mallet and did it again. A few minutes later, we wrapped it up and headed out.

Peyton cried and cried because she wanted to go with Grammy. She was inconsolable...she did NOT want to leave Grammy. We promised her they would be together on Friday night to celebrate her birthday. DH, Micah, Maya, Dad and I headed back to the nursing home with Mom for a bit.

When we arrived, we all sat together in the front waiting area before Mom decided to head back to bed. Dad left for home around 4, and we stayed a bit longer. Micah sat in Grammy's room watching his Elmo DVD, and Maya hung out snuggled in bed with her Grammy. I continued reading Mom all of your emails, posts, notes on Facebook and texts. I spent a few minutes cleaning Mom's face with her cleanser and using the cream for her face and head to help the itching, then used a Qtip to help remove some of the dry skin from her ears. While we were wrapping up our routine, the speech therapist arrived for a session with Mom.

Mom was looking a bit tired, so we decided to leave at 4:45. We headed home (and stopped to buy a lottery ticket, too, since it seemed like such a lucky day). Another uneventful night at home, and another difficult night putting Maya to sleep. She crashed at 8, I put her in her crib at 9, she woke up again at 10:15 or so, and it took another hour before DH could get her back in bed. She just wants to be snuggled and hates to be put back down again!

Much to my surprise, my mother has not been calling tonight. I hope that means she has been sleeping soundly. Usually she calls around 8 or 8:30, again at 10 when they wake her for her pills, and then often sometime between 4 and 6 am, and usually again around 8 or 8:30 before she heads to therapy. So far, the phone has been silent...I hope that means she has been sound asleep and having a good night.

Tuesday, October 26, 2010

For Whom The Bell Tolls...It Tolls for Mom

It is so hard for me to focus on today while I'm busy thinking about Mom's last day of radiation. I'm excited and anxious and cannot believe we have made it so far. I've got 3 thoughts to share with you, a run-down of our day, and a favor, so here goes. If you read nothing else, please read my favor at the end of this post.

THOUGHT #1: It is funny - I mentioned helping Mom take off her acrylic thumb nail this weekend, but I didn't really explain much about that. Many of you may be aware that my Mom nearly lost the top of her thumb when she was 3 years old. She got it caught in a door, and it was badly injured. They managed to reattach it, but the nail bed was badly damaged. Her whole life, my mother's thumb nail was never...normal. She also bit her nails, so all of her nails were fairly short. I clearly remember her thumb, and always found it fascinating. I know it used to bother my mother...I think she was never fully comfortable with her hands because of her thumb. During the winter, it used to crack and hurt her...I always remember her putting Desitin on it and keeping it covered with a bandaid. Maybe 15 years ago (I am fairly certain I was in college or law school), Mom decided to try and get acrylic nails...and see if there was anything that could be done with her thumb. My mother discovered a woman named Lan, who uses acrylic to build a nail for my mother. Ever since my mother met Lan, she has had a "real" thumb nail...unless you know what to look for, you'd never know that there is anything different about my mother's thumb. It has been many years since I saw my mother's thumb exposed like it has been since Sunday.

THOUGHT #2: I've also been thinking a lot about changes. On Sunday, my Mom and I tried to work on crocheting. It was hard to watch my mother frustrated...and unable to crochet. It was a huge change for us. She still knows how to crochet, but she really does not yet seem able to use her left hand enough to make it possible. I bought her a great contraption for holding the yarn...but my mother just isn't able to see her left arm or make it move on command, at least not yet. I was frustrated for her - we just need to work on her lifting her left arm on command and I think she'll be able to crochet again. We're going to work on that skill and see what we can do.

THOUGHT #3: With only one more day left of radiation, I've been thinking about bells...the significance of bells, and their impact. Bells have so many different meanings...some people love the line from the old Christmas movie, It's a Wonderful Life, that every time a bell rings, an angel earns his/her wings. Others think of bells as a call to action, or a warning or an alert. It is finally time for Mom to ring that bell, signifying the end of her radiation and intensive chemotherapy. For us, a bell will now mean a victory...a small victory, but a victory nonetheless. My mother has made it through the past 2 months of surgery, recovery, radiation and chemotherapy. We'll meet at the hospital - all of us. Mom, Dad, Me, DH, Micah, Maya, my brother, SIL, Paige and Peyton will all be there to support Mom. We'll wait with her, hope things run on time, and at the end of her appointment, we'll watch as she proudly rings that fire bell! I'm so proud of all she has been through to reach this point...a day we were not certain we'd actually get to see.

THE RUN-DOWN: So, a run-down of our day today before I ask a favor from all of you.

Mom was busy calling all night last night...4:00 am, 6:30, again around 8:30...she was up and felt like chatting. She pointed out that I'm usually awake and I told her to call any time, so she does. It makes me laugh...and it reminds me of the times in college when I didn't hesitate to pick up the phone and call HER at 3:00 am because I wanted to talk.

Maya was up around 8:15 to nurse and snuggle, but we did not get up and going until Megan arrived at 9. We had to hurry and get ready and out the door because Micah had class at 10 and Maya had her 4 month doctor's appointment! I cannot believe that Maya is 4 months old already. She weighed in today at 12 pounds, exactly, and she was 24 inches long. She was in the 25th percentile for height and weight, and is doing great. She showed off her skills, she got 3 vaccinations (2 shots and an oral vaccine), screamed and cried until I nursed her, and then crashed from exhaustion into a deep sleep in the car.

I decided not to disturb her sleep, so I dropped DH off at home, and Maya and I continued up to the nursing home a bit early. We arrived at the nursing home around 12:15, and we had 45 minutes to hang out with Mom before Chanel, the transport driver, arrived. We've got a great photo of Dad, Mom & Chanel arriving at the hospital from the transport to show off. Chanel has been wonderful for us - she shaves nearly 2 hours off of Mom's waiting time by sitting with us and driving Mom back. Chanel was in GREAT spirits today...she told us all about moving into her new house and how she surprised her children. It sounds like she had an amazing weekend, and I wish there was more we could do for her to repay her for her assistance with Mom.

We arrived at the hospital early. Radiation was on time, and we were in and out quickly. We had to go upstairs to see the doctor, but we were out the door and headed back by 2:45. Chanel waited again, and we were back at the nursing home nice and early. We are expecting Chanel to join us for our last day tomorrow, too. I hope we have the chance to see her again one day.

I decided to head back to the nursing home with my parents...mostly because Dad and I were hoping for a surprise visitor for Mom. Right around 4:00, she arrived! Donna, my mom's nurse from the hospital, stopped by to visit. It was WONDERFUL to see her, and she looked amazing. She brought a beautiful new hat (and some scarves) for Mom, too, and she is looking forward to wearing it. My Mom is developing quite the hat collection. My grandfather, who was a millinery (he owned a hat store), would be so proud! We had a wonderful visit and chat with Donna. My Dad left first, then Donna, and Maya and I left by 5:15.

It was a good day, and I came home in time for a homemade pizza dinner with the family. Micah again went to bed easily, but Maya struggled. She first fell asleep around 8:30, but woke up again at took us another hour or so to get her to fall back asleep and stay asleep. I'm finding this new pattern frustrating, but we'll keep trying something new and see if we can get her to bed earlier.

THE FAVOR: Now, for our favor....

So many of you have been there with us through thick and thin, and I've been trying to think of ways for everyone to "be there" for this major accomplishment. Of course, I'll be recording it, and I'll post the video online, but I was trying to think of other ways for everyone to "hear" Mom ringing that bell when it happens. So I thought I would ask everyone to help us ring that bell by setting an alarm or a bell to ring at 2:15 pm on Tuesday, October 26 (which is about the time we expect Mom to be ringing that bell). Set your alarm clock, or the timer on your oven, or your cell phone, or your watch, or your appointment reminders on Outlook...whatever works for you, but let's get things chiming all over the place at 2:15 pm so you can ALL "hear" Mom ringing that bell today! And at 2:15, each and every one of you can take a second to think about Mom and listen for that bell. I can't WAIT!!

Last day of radiation. Ten more days until Mom comes home!

Monday, October 25, 2010


Today was quite an brunch at the nursing home and another shaved head! The kids slept in a bit this morning. We have been working on brushing teeth with Micah. This week, we started using a new motorized toothbrush...we were hoping the spinning would do a better job of cleaning his teeth, but Micah prefers to watch the brush spin than keep it in his mouth. Oh well...we'll get there.

We decided to skip Micah's swim class so that we could be at the nursing home by 12 for the brunch. Brunch was lovely...eggs, waffles, potatoes, muffins, bagels, juice, and cake. They insisted on serving us, so all we had to do was sit down and enjoy. Micah, Paige and Peyton loved running around and playing together, and Mom had a great time surrounded by all of her family. My brother, SIL and the girls stayed until almost 2, and we got some great video of Mom with the girls.

After lunch, we went back upstairs. Mom sat with us in the lounge area for a while. DH ran to the store to pick up some nail polish remover for Mom (she needed to remove the acrylic from her thumb nail). We sat, talked, watched the kids play, and soaked Mom's nail. I read Mom the blog and your messages, and we had a great afternoon. While Mom and I were talking, DH decided to get his hair cut, too. In fact, DH went bald in solidarity with Mom!

Mom was back in her room by 4 and Dad left. I took some time to grease up her head and face again. Since she shaved her head, we've done a daily routine of cleaning and greasing her head and face. Her head has been far less itchy since we started our routine. Hopefully, once radiation is finished, her skin can finish healing. Mom has also been working on video messages for us. The other day, she recorded a message for Maya. Today, she recorded a message for my brother. She hopes to make at least one for each of us, but has not yet figured out what she wants to say. She wants to make sure that each of us has something from her to watch over and over again...and lots of video so the grandchildren can "get to know her" even when she is gone. So far, her messages have been beautiful. At some point, I'll have to figure out how to tie together all the different video we have of her into something special.

We left around 4:45 to bring the kids home. A quiet evening in...dinner, playtime, baths, and bed. Micah can be so finicky sometimes! He gets angry when he does not get what he wants, but he truly lacks the ability to fully communicate everything he wants to us. We spent far too much time playing "guess what Micah wants." Micah was easy to put to sleep, but Maya was a bigger challenge. I got her dressed and ready for bed around 8:15, and she was out cold by 8:30. I took her upstairs and put her in the pack 'n play...but she woke up. I nursed her to sleep again, but once again, she woke up screaming when I tried to put her down. We spent the next several hours trying to get Maya to sleep. She seemed to want to sleep on me, nestled close, and anything less than that was unacceptable. Eventually, she fell asleep on Daddy, and he was able to take her upstairs and put her into her crib. She has been sleeping soundly ever since. I think Maya is in need of her own bedroom and a new bedtime routine that involves a dark room and a glider. Hopefully, we can give her that when we move into the house. In the meantime, I hope her bedtime becomes easier!

Two more days of radiation. Eleven more days until Mom comes home.

Sunday, October 24, 2010

Running on Empty

Some days, there is just nothing left in the tank...I'm definitely running on empty. I'm focused on the countdown. Two more days of radiation. Twelve more days (we believe) until Mom comes home. Twelve more days of commuting an hour each way, every day. Just twelve more days, and we can return to some semblance of normal.

Somehow, in the next twelve days, we have to move. Not only that, we have to combine households, arrange for equipment for Mom, set up a schedule for caretakers, continue to commute to the nursing home, and try and keep the appearance of normalcy in place for the children. No problem, right? I have not even begun to think about how to go about packing. I know that we do not need to pack and move everything in one day, but we will need to empty our house for the renovation and move all the big things in one day. Thankfully, we do have lots of organizer who can take over the planning, and friends who have offered to come fill boxes. Now, I just have to get over my embarrassment about all the mess in the house, and we're all set!

Another relatively uneventful day...Mom was in great spirits today. She loves the days we do not have to transport to the hospital...the waiting is the worst. My day started with a 5:00 am phone call from Mom. She sure loves to call bright and early! The kids slept through it...but Micah had been awake on and off all night last night, so I got very little sleep. It is rare when he has a rough night...turns out, DH forgot to give him his reflux medication before bed.

Micah did not really get up and moving around until almost 10, so we had a very late start. While we were getting ready this morning, Micah decided he wanted to pee on the potty again. He joined me in the bathroom, he stripped down naked, sat on his little potty...and peed! Unfortunately, he peed right off the potty and all over the floor in front of him. I made a loud noise when I first realized he was going to pee off the potty, and it startled Micah a bit...he stopped for a moment, and I thought he was finished. But, when he realized I was not upset with him, he relaxed...and went back to soaking the bathroom floor. Like every good mother, I cheered for him because he sat on the potty and peed. He was so proud of himself...he clapped and said "Yay!" for himself, too. And then he pointed out that there was a mess on the floor, and gave me this look that seemed to say "Mom, hurry up and clean, would you?" I'm so excited that he is getting the hang of the potty...but cannot for the life of me figure out how to teach him to pee IN the potty. I mean, I understand the concept...we either need to teach him to "tuck in" or use the pee guard on the front of the child's potty. Unfortunately, Micah thinks the pee guard is a toy, and yanks it off every time he sits down on the potty. Maybe I can glue it in place? Although the last time we made an alteration to the potty (we removed the lid so he wouldn't pee with the lid down), he was not happy about the potty for a while. He just doesn't sit still long enough for me to teach him to "tuck in." So, for now, I guess we'll just have to stay out of the line of fire, right? If you have any good suggestions, feel free to send them along!

It was after 1:00 before I arrived at the nursing home with Maya, and my brother, SIL and the girls had already come and gone. When I arrived, my father and four of my mother's friends were all visiting my Mom. I was only there a few minutes before she had to leave for physical therapy (another surprise...we were told she had no therapy sessions this weekend). I waited with everyone while my Mom did her therapy, and when she returned, everyone else left. I stayed with Mom (and Krystal) for a few hours, and we talked. I showed Mom how to work her new audio book that Dad picked up from the public library, and we talked more about death and dying. I read her the blog and messages, and we spent time talking about happier subjects. Mom made several phone calls, attacked a peanut butter and jelly sandwich, and then she looked exhausted. I left a little before 5 and headed home for the night.

I had a nice, but quiet, evening at home again. Maya has been a champ lately...she is loving her pacifier, taking bottles (okay, 3 times now), and she is getting so close to rolling from her back to her belly. Micah has been so cute and loving with her...he gives her kisses and hugs, and he seems to like her most of the time. I love watching him try to dress he put his dirty shirt from yesterday on...but on his legs. He has huge conversations with me...I just wish I knew what language he speaks. My mother used to swear that my brother spoke Czechoslovakian when he was a child...but I think Micah speaks some sort of alien language. DH would probably make a joke about him speaking Klingon (ever since we discovered Micah's skull issue last year, DH likes to compare him to Star Trek Klingons who apparently have a similar ridge on their forehead?).

Micah was not a happy camper today, though...he realized that DH had safety locked the silverware drawer, effectively stopping Micah from his nightly habit of emptying the drawer of all of its contents. He cried for quite some time when he discovered the drawer was locked. I should feel sympathy for him, right? I spent most of my time laughing because his irritation was so darn cute! He makes me laugh when he is angry.

Saturday, October 23, 2010


I think my ability to write may have deserted me tonight. Today was one of those days that just felt...slow. One of those days when I kept glancing at the clock all day long, each time surprised that only 5 minutes had passed since the last time I checked.

I never made it upstairs to bed last night. Again. I did catch a couple hours of sleep on the couch before the children woke up, but Micah got up a bit early today. My mom called bright and early, too, to tell me that she had a good night. I love her phone calls, even when they wake the kids. It makes me smile to know she is thinking of me.

Micah ate a good breakfast again...I think he loves to eat eggs. I keep wondering whether I should try getting "fancy" with the eggs...maybe fried eggs, or a bird's nest. I always end up keeping it simple...plain old scrambled eggs, with either an English muffin, cereal, or oatmeal. He usually likes a little fruit (either raisins or a banana) to top it off.

Our babysitter arrived at 9, and I spent most of the morning playing with Micah and trying to accomplish odds and sorting the mountain of laundry for Maya. Those hand-me-downs have been a mixed blessing...with all the clothes, it takes me forever to try and figure out what pieces go together and get it all organized. I still have pants that do not seem to belong with any of the tops, and vice versa. It will be wonderful to have new (and warm) outfits for Maya to wear...but I think those unmatched pieces are going to make me crazy! If history holds true, I will probably find the matched sets when it is time to pack them all up again.

I was late leaving for the hospital today. I just couldn't seem to get myself going. Maya was napping and I did not want to disturb her, but then she needed to nurse when I finally tried to move her into her car seat. As I left, DH was dealing with an hvac technician who was supposed to be replacing our thermostat under warranty. Unfortunately, the touch screen broke, so we can no longer adjust the temperature in our house. The air is stuck too high, and the heat too low, so it is always either too hot or too cold in the house. This has been going on for three weeks now, and I hit my limit of "waiting" for the warranty replacement. Suffice it to say...we did not get the warranty replacement done today...but DH did go out and buy a new thermostat at Home Depot and install it himself. I sure hope he did it correctly!

Mom was in great spirits today. Once again, we had requested a specific driver...Chanel. She has been so wonderful to us these past few days, and whenever we get her, she also waits with us so Mom can return to the nursing home faster. Chanel shared with us that, despite the fact she has been working, she has been homeless. She has 4 children, too, ranging from about 6 or 7 up to 17. She was thrilled to share with us that as of tomorrow, she will finally have a home again! She has been working with an organization who helped her out, and she had the biggest grin on her face as she described her new 4 bedroom home with beautiful wood floors. I couldn't help but smile along with her...I hope her new home is filled with happiness and that she and her children always has a roof over her head.

This journey we've been on has been incredible. We've met so many wonderful people...staff at the hospital, transport drivers like Chanel, nursing aides like Krystal, the woman with lung cancer undergoing treatment when my mom first started...who used to sit and chat with me every day while I waited for mom, and yesterday, the family with a daughter who had lymphoma. I never even asked their name, but this family touched me. Their daughter could not have been more than 10 or 12 years old, and there she stood, bald head, mask on her face, and a huge grin as she rang the bell! They were from out of state, and drove all the way down each week for treatment at the hospital. We talked about how when it rains, it pours...the father had a heart attack the previous week, and ended up in the hospital while his daughter was undergoing treatment. We connected as we talked about how it feels like everything bad keeps happening all at once. We talked about how we wished we could just stop everything else in our lives to focus on this for 6 weeks, because the juggling and balancing everything else like work and finances and commuting and children is just...too much sometimes. Though we only spoke for an instant, we bonded - in that moment, we just understood each other. I hope that their daughter's treatments were successful, and that she lives a long and cancer-free life.

We were back at the nursing home quite early (thanks to Chanel) - about 2:40! My father took off early, and I sat with my mom and Maya for a bit. She made some phone calls, she talked, and we did some planning. My mom decided she wanted to make a video for Maya - a beautiful message to her to tell her how much she loves her. Mom would like to make videos for all of us, but she struggles with what to say. I think that when the time is right, she will know.

My mom is a little anxious again about death. The Rabbi came by today to talk to her, and she has been fixating on things again. In her head, she thinks of death as being buried alive. I've already mentioned how much that disturbs me, and I have no idea when that thought started. I often wonder if that is the tumor and steroids talking or if she has always felt that way. It is like one minute she thinks of death as the body stopping...and the next minute she somehow thinks we will just bury her alive. She is worried about animals getting in, about sitting in the dark, about keeping warm and making sure her cell phone is working so she can call everyone.

I wish there was some way I could alleviate her fears. We talked a little about death again, and I told her that I just could not believe that death was like being trapped in darkness underground. I think that if you believe that life ends at death, then there is nothing. We simply cease to be, feel nothing, and the body slowly disappears. If you believe that we are more than our bodies, then it *has* to be that the body separates from the soul, and that the soul is free. It makes no sense to me that we could have a soul that continues on in some capacity...but gets trapped inside a feeling body. I think the point of having a soul that continues on is that it IS free - one with the universe, or in a heaven somewhere, or perhaps floating near family.

I'm not sure what I believe about the hereafter. I like the thought that our souls continue on in some capacity. There are moments when I've felt that my loved ones must be nearby. I think that even if I do not believe in souls continuing on in the literal sense of the word, I do believe that we continue on in others.

In one of my mother's posts, she said something about saying goodbye being like giving your memories away to your friends. I was not quite sure what she meant at the time, but I've been thinking about it. Maybe dying is like becoming a memory, and maybe the soul is just memories and feelings that live on in others. There is a Jewish prayer that we often recite when in mourning or observing yahrtzeit (the anniversary of a loved one's death). I won't publish it here today, mostly because today is no time for mourning. It talks about how we remember people we've lost during the simplest the rising of the sun, in the blowing of the wind, etc. My favorite line is "As long as we live, they too will live; for they are now a part of us, as we remember them." I like the idea of people we lose living on as a part of us...they feel no pain or fear, no cold or animals, but they are close to those of us who love them most and think of them often.

After our "heavy" day today, I left my mom on the early side - before 5:00. Mom was sleepy and ready to nap, so I decided to let the aide handle her dinner. Krystal was on the nursing home floor working when I left, so it was good to know she was around to help out if needed, too. I made it home by 6. DH and Micah went to services and a Shabbat dinner. I think the preschool was doing a Shabbat dinner, but I just did not have the energy to go. I managed to get Maya to sleep early tonight - before 9:00 pm in the pack and play! The pacifier seems to be the long as she can keep sucking, she is happy. I am hoping this is the beginning of a beautiful new pattern...and an earlier bedtime for Maya.

I'm off to bed. I have Maya's laundry from last week all folded and sorted (finally) and another load of my laundry ready for the dryer. I still have a third load of my clothing to do, a load of towels, and another load of the children's clothing from the past few days. I think I could spend forever doing laundry.

We've been told that mom has no therapy sessions this weekend, so Saturday will be quiet for Mom. On Sunday, there is a family brunch around 12, so we'll all be there with her for that.

Friday, October 22, 2010

Brave and Bald

Mom was brave and gorgeous you can see from her photo, she decided to shave her head. What do you think? I LOVE it! I think she looks beautiful, and I'm so proud of her for doing this.

I'm going to do a very quick run down of our day awake at 8:30, babysitter here at 9, Micah cried most of the morning because he thought I was leaving. Megan took Micah on a walk while I left for the hospital . On my way up, I spoke to a friend visiting from out of town...she had extended her stay until Monday. The hospital was mostly on time, and transport agreed to wait for us. We were back at the nursing home by 3...and Mom had her hair done!

She sat there calmly, getting her head shaved. After the shaving, she was able to have her scalp massaged and washed off - and she said it felt wonderful. She did a bit more PT after her hair do. I stayed around until 5:15, then stopped by another hospital near my house to visit my friend's mom (who just had back surgery). We were all home by 7, and we spent the evening hanging out together.

Thursday, October 21, 2010


Family. Today is a day that I am thinking about family. Family comes in all shapes and is the family you are given, and the family you make. My mom and I were talking today about life...friendships, death, and other heavy topics. My mother has so many lifelong friends, and I really don't have the number that she has. I have a few, but many of them are not still in my life on a daily basis. And then I think about her friends that she has known for the past 40 years...and I realized that maybe, just maybe, a few of my friends from the past 5-10 years will still be in my life 40 years from now, and I hope that I am lucky enough for that to happen. My mom said that when they first moved down here, none of her friends had family close they made their own family. She is right - so many of my mom's friends (and their children) feel more like family to me than friends. They are my "Aunts" and "Uncles" and their children are my "Cousins."

Tomorrow, my mom is meeting with the Rabbi. She keeps thinking that he'll tell her she is crazy when she starts talking about death and all the things she wants to bring with her. She then asked me if she should share her "tag line" with him (what she plans to say to me when she calls me from the grave on her cell phone). Mom then asked if I would share our conversations from her grave on the blog after she died. I then said to Mom that if she called me from the grave on her cell phone, and I wrote about it on the blog, there would be several hundred people calling the authorities to have me locked up in the crazy hospital!

We tried to talk more about my Mom calling from the grave. She said that in Tuesdays with Morrie, he said that when you die you are just gone, and that she believes that, too. But then she talked about becoming one with the universe, which seemed like a nicer thought to me. I asked her why she thought she would be calling me on a cell phone from the grave if she thought that when people die they are just gone. She thought about it for a minute, and didn't have a response. I asked her if she thought Grammy was in her grave able to talk on the phone. My mother shook her head no, so I asked, "then why do you think you'll be calling me from the grave when you go?" Her response? "Because I know how to work a cell phone and Grammy doesn't." Okay - point taken.

I think it upsets me that my mother is thinking about death as if we'll bury her alive. That she is thinking she'll be locked in a box under ground, wanting to talk to us and unable to reach us. She is thinking about how she will charge her phone, but she is certain that she'll have good reception under ground (it works on the subway, you know).

My mom and I also talked about love. I have a whole other post I've been playing with...but I'm going to save that for yet another day. Maybe tomorrow. Suffice it to say that my Mom told me she is very proud of both of us (me and my brother)...more proud than she ever would have believed possible. She talked about how thankful she was for our support, and then said that she doesn't know how a person could go through all of this without a family. She said that a person would just get lost and die without family around - bad medications, missed treatments, etc. I think that she is correct. I would bet that the studies show that survival rates are proportional to family support. We've been told before that many people with transport issues simply just do not do treatment because it is too hard to do alone. How is it that in a world with such advanced technologies, we still cannot figure out how to make sure that sick people can take advantage of available treatments?

It must have been a long day today, because I can barely remember many of the details. To be truthful, I cannot remember which child woke up when this morning. I think I remember being awake on the early side, and I am certain I did my best to let DH sleep in a bit on his birthday. I hope that DH had a happy birthday...despite the fact that it was not a day all about him. He did not get a card or a gift from me today, and I am sorry that I just could not do more to make it more special for him...but I did let him sleep and tried not to give him a hard time about anything. I do remember DH bringing Maya downstairs to me and then going back upstairs to bed. I also remember Micah being a bit on the cranky side again today. He did eat all of his breakfast - eggs and an English muffin. I remember that because the sight of Micah eating these days is becoming a rarity!

Somewhere in the middle of all of this chaos, our new landlady showed up with the final contract and the keys. There are moments when my sarcasm seems to get the better of me...and dealing with my new landlady this morning was one of those times. She started to lecture me about taking care of the house (we have a contract, and we're liable for damage, so what does she think, we are handing over all of this money so we can trash her house?)...I very nearly told her that I had no intention of taking care of the house, but would prefer to run through it with a sledgehammer and destroy it. She then told me we needed carpets in the house. I said we were moving all of our things, and that included carpets. She started to explain to me about how carpets work, described what she meant by which point I cut her off, told her that I was well aware of carpets, she was standing on one, I pointed out the one in the kitchen, and I told her that when I said we had carpets and would be moving them, I meant we would be using carpets. She then tried to explain again WHY she wanted carpets, and I think I practically shoved her out the front door. I think this woman is going to be a thorn in our side.

Micah and Megan headed off to class around 9:45, and DH, Maya and I left for the nursing home. Today was our care planning meeting at the nursing home. The meeting started a little late, but it was a good meeting. We received a report from each of the departments...nutrition, nursing, rehab and social work. She has been standing for over 10 minutes with the knee support, she is doing quite well with assisting in transfers using her good side, and she is doing extremely well in speech therapy. Overall, my mother is doing quite well and making progress, and the rehab people are recommending that my mother stay until November 4 to continue working on her therapy. We are waiting for word from insurance, but we are hoping for the extra days to help my mother build her strength. We had the opportunity to voice a few complaints...about the medicines being administered poorly, etc. We also learned that my mother has been losing time at rehab because the nursing staff has consistently failed to get her ready and downstairs for therapy by 9:00 am. We were not happy to learn about this, but we have been told that it will not happen any more. Once we have a more precise discharge date, we will begin to work with OT and the social worker to obtain all of the equipment we will need for Mom when she gets home.

After our planning meeting, Mom ate lunch and got ready for transport. I had brought Mom and Krystal cupcakes, and a chocolate covered strawberry for Mom (by the way, I forgot to mention yesterday that I received a BEAUTIFUL entire box of chocolate covered strawberries! They have been incredible, and I believe I already mentioned my obsession with chocolate covered strawberries). While we waited for transport, Mom ate her cupcake and said it was a wonderful treat (she saved the strawberry for this afternoon)!

Transport was a bit late, per usual. On our way to the hospital , I received a text from my friend...her mom had back surgery today, and is doing well. When we arrived at the hospital, we learned that they had an emergency and were running about 15 minutes behind. As is par for the course, 15 minutes became 30 minutes became 1 hour. We had gotten transport to wait with us...and at the 30 minute mark, she left I immediately had my father call and schedule another transport back, because I knew that we'd never get back unless he called immediately. Naturally, 10 minutes after she left, we were ready for transport again. My mother was ready to go by 3:15, DH, Maya and I left at 3:30, and at 3:45 they were STILL waiting for transport. I kept calling every 2 minutes until transport finally arrived. I just do not understand their system!

We got home right around 4:30...and I was amazed that the house was cleaner. Megan had straightened up a bit...emptied the dishwasher, organized the toys, cleared off the dining room table. I just couldn't thank her enough! I waited for our friends to come meet me. While I waited, I spent some good quality time with Micah. Micah has a new game he likes to play...he opens the front door and stands between the door and the screen. He says "bye-bye," and then closes himself between the door and the screen. He opens the door again a few minutes later, pleased with himself, and then starts all over again. The game makes me nervous...I think about my mom warning us about doors and children's fingers (she nearly lost her thumb and the tip is severely damaged to this day because she got it caught in a door when she was 3), I worry that he'll accidentally lock himself in there, and I also worry that he'll somehow suffocate in that space. But, try as I might, I cannot get Micah to give up his new game.

My friend arrived a little while later, sans her mother. Her mother needed to stay behind at the to take care of some things for her grandmother. My friend and I headed off to the nail salon, and we had a nice chat. We talked about so many different things...her pregnancy, Mom, her grandmother, the future, and we spent a good deal of time reminiscing about the past. After our nail appointment, my friend and I went to get dinner for everyone, and brought it home. My father had arrived, and it was our plan to eat dinner together...but like all good plans, it was foiled. Her parents were stuck waiting for an aide to show up to take care of her grandmother and never made it to dinner.

Instead, we sat with far too much food (but had a lovely dinner). My father left after dinner, we lit a candle for DH's birthday, and we had cupcakes. My friend and I continued to sit and talk after dinner. We were so much a part of each other's lives growing up...she used to call our house EVERY morning at 6:30 am before school. She always came over and sat at our kitchen table while my brother and I ate breakfast and got ready for school. If I sat here and shared all of the stories we discussed, I think the blog would be a novel. We laughed about the times she would try on every outfit in her closet...about 10 minutes after her mother had just folded and put it all away. I remember sitting with my Mom as she comforted her mother who was beside herself with my friend's closet-emptying addiction.

We laughed about the time my brother first noticed that she had grown breasts (it was over breakfast one morning before school). We also laughed about her's baking adventures...I remember one time when my best friend was babysitting her and her brother, and she called me crying about how she did something awful in the oven and she was worried they would fire her. I ran over to help out...and saw the chocolate chip "cookie" that was shellacked to a cookie pan. I still have no idea what she did, but I'm fairly certain the pan was history. I recalled my first "real" date (one that drove a car)...and I remember clearly that her parents showed up to see me off, too, and I was totally mortified that I had 4 parents there with the potential to embarrass me!

And we never reminisce without me reminding her of the time she nearly attacked me with knives. She and my brother were hanging out by themselves after school one day with their friend. She was always fearful of being alone, and she managed to convince the other two that someone was breaking into the house. I was by myself at our house, and received a panic call from them screaming about how someone was trying to break in and kill them. I rolled my eyes, grabbed the key to their house, and headed right over. I knocked, but they didn't answer, so I put the key in the lock, opened the door...and from every direction, children with hands full of knives, scissors, and other sharp instruments jumped out at me screaming "YAH!" Yes, they went nuts and tried to kill me. I confiscated their sharp implements, calmed them down, and stayed with them until her mom came home. I don't think I told her mom that they were playing with knives, though, because I knew they would get into trouble. My brother playing the tough guy after the fact as he told me how crazy she was and he knew better. I remember thinking, "Yeah, that is why you only had 3 knives in your hand instead of 50 knives and 2 pair of scissors."

We spent so many family holidays together that it is hard to think about my childhood and not think of them. We were in and out of each other's houses daily, and sometimes it felt as if there was an open phone line between our two houses. We always think of each other as sisters, not just it was wonderful to spend the afternoon today with my "sister."

DH's brothers and parents called today, too, to wish him a Happy Birthday. Micah talked a bit on the phone to his Grandma and Poppy. We are working on getting him to talk on the phone with them. He did say "night, night" and kiss the phone. We need to get one of the family members to set up their web camera and get them set up with a Skype account - we should be video chatting with them more often.

I guess it is nights like tonight that I realize how lucky I am to have so much family...both my blood relatives, and the family we've chosen. I'm so glad I got a bit of a break today. Happy birthday, DH...we will definitely plan a night out in the near future to celebrate.

Wednesday, October 20, 2010


Sorry I'm so late with the blog today! Yesterday was rather uneventful (in a good way). My mom had a new aide for the day (she was no Krystal, but all seemed to go well). The hospital was on time with radiation, and transport back was on time, too. Mom has been feeling good, and we are planning for her return home. We read mom the blog and the messages.

We had preschool for Micah yesterday...he was so well behaved! I made it to the hospital early, and Maya and I got our usual attention. On our way back from the hospital, I detoured to the grocery store to take care of a minor "emergency"...we ran out of Breyer's Chocolate Ice Cream! Mom was very itchy yesterday, so I spent some time greasing up her face and head.

I left early for the day and came home to bake cupcakes for DH is his birthday (today...the 20th). I am experimenting with a new recipe, so we'll see how it all turns out. We hit another major milestone...Maya actually took a bottle! I think we may finally have gotten her over the hump and she seems to have figured out how to suck. It was such a relief. She only took 2 ounces, but I am declaring victory. I hope she will take a bottle again tomorrow!

It is 7:00 am...I'm getting the "yesterday" and "today" all mixed up in this journal! Today (meaning the 20th) should be interesting...we have a family meeting to discuss my mom's rehab stay, and I have plans this afternoon with friends.

Tuesday, October 19, 2010

New Normal?

Maya was up a bit early again this morning so I brought her into bed to nurse and sleep. Micah woke up at 8, but we left him in his crib until 8:30. We were downstairs with both of the kids by 8:45. Micah was being difficult this morning - he would not eat any breakfast before class.

Mom called this morning to tell me that all was well...and Krystal was back again! I was glad to hear it - it is always easier to have a familiar face than try to work with someone new. While Micah and Megan were out at class, I finalized the lease for the house!

Micah and Megan returned, and we spent some time together before lunch. Micah's nose was running a bit this morning (I think from allergies). He was very cute - he now knows how to blow his nose! He is truly getting to be a big boy - last night, he walked up the stairs on his own - completely standing on just two legs, not crawling or using his hands. I was out the door at 12:30 to meet my parents at the hospital.

For the first time in a very long time, things ran smoothly at the hospital. Our nurse was getting ready to go on a charity trip to Guatemala next week. Before he left, he gave my mother a worry doll to carry in her pocket, and a CD of piano music that her recorded. My mother was once again, touched by generosity. I uploaded the CD to her ipod tonight. My mom asked for a different cream for her head (due to the itching), which sparked an impromptu visit to the outpatient clinic so that we could meet with the radiation doctors. They gave us a prescription for a new cream, and now we are just waiting for the nursing home to fill the prescription and bring it to us. We also requested written orders for the nursing home regarding my mother's last radiation and chemo treatments date.

Much to our amazement, transport was waiting for us as we were finishing up our meeting with the doctors. My mother left the appointment and went straight onto the wheelchair van - for once, we were back at the nursing home right around 3! It was such a relief to have the day nice and short - we have had far too many long days.

When we returned, Krystal helped my mother back into bed while we turned in my mother's written orders. We also learned (on the way home) that the weekly blood draws that were requested from the doctors at the hospital had never been delivered. My father called the doctor, and we *think* they did the weekly blood draws but just failed to send them over to the hospital - we think we can get this corrected in the morning.

I learned that my mom's friend had been by to visit in the morning and had brought us mushroom barley soup and a chocolate babka! Even better...she framed a picture of our family that we took on Saturday at my mom's birthday celebration.

My father left a little while later, and I hung around for a bit to read mom the blog and take down her message for today. While we were there, Maya actually sucked her thumb!! I know that doesn't sound like anything important, but with all of Maya's sucking and swallowing problems, fingers in her mouth (even her own) usually make her gag and sometimes even throw up. She actually took her thumb and placed it in her mouth and sucked...normally. For several minutes. It is a huge milestone for us.

My brother, Paige and Peyton showed up for a visit around 5:00. It was great to see and spend a bit of time with them, and my mom was just thrilled they were there. They spoke, she got kisses from her girls, and it was a beautiful afternoon.

I left before my brother around 5:15. Krystal was still there, and she was heating up some leftover food for Mom for dinner. When I got to the car, I decided to see if Maya would take a pacifier to keep her calm...and much to my shock and amazement, she did! She sucked on that thing for a good 10 minutes, and cried when it fell out. Maya has never been able to take a pacifier, so I am thrilled we have finally made some progress!

I made it home in an hour, and we had a phone appointment with our architect to discuss the builder's proposal. Things are slowly but surely moving ahead for us.

Despite everything, tonight was a rough night for both of the kids. DH put Micah to sleep at 8:30 and then went out to Target to pick up a few things we needed. Naturally, the minute he left, the children both melted down. Micah was shrieking and would not go to sleep once he heard the door open and close, and Maya would not let me put her down. I find it nearly impossible to deal with both of them melting down at the same time. I eventually brought Maya into Micah's room, and rocked with her while talking to Micah.

All was well for my mom tonight - she called around 10 while I was still struggling with two awake and cranky children. She was thrilled to hear about Maya taking a paci, and she did her best to help comfort the kids (and me) over the phone. I said goodbye, and spent the next hour dealing with two competing cranky babies. Maya finally passed out - she would whimper every time I tried to put her in her crib, but she was quite content in the swing. Micah was awake, but finally let me go downstairs. DH got home a little after 11, and he took over with Micah. I think it was close to midnight before Micah finally fell asleep.

Thankfully, Maya has stayed asleep (DH was able to transfer her to her crib without incident). I hope both kids stay asleep for a few more hours!

I'll meet my parents at the hospital again tomorrow. We made an appointment to have my Mom's head shaved on Thursday, and I uploaded an audiobook for mom onto her ipod, so hopefully she will be a little less bored. I may try working with her a bit on crocheting, and I'll remind her that she has cards - perhaps someone can play cards with her in the evenings.

8 more days until the end of radiation.

Message from Mom

I only have 6 sessions left of radiation. All this week and 2 days next week. When treatment is over, there is a tradition at the hospital to ring a fire bell. I'm looking forward to ringing my fire bell with the rest of them in celebration. It means I've completed a large milestone that I wasn't sure I would get through unscathed, originally.

I also think I've reached the end of having nothing to do. Tess is bringing me books on tape - I need something to do. I've been doing word searches. I used to do them by the hundreds, but I find them difficult now because of my vision, and sometimes I feel very dumb. I guess I just need to get back on and try again.

Transport was on time today - whee!! It makes my day so much shorter and less aggravating. Things are okay here - they are late with my meds daily. Things are better now with the aides - Krystal is wonderful and I don't have to worry.

I am having difficulty sleeping all of the sudden for some reason. I used to sleep immediately and for 12 hours a night, but falling asleep is hard now.

Monday, October 18, 2010

Order and Control

I'm sure it is no surprise that I like order in my life. At the root of my need for order is control...once again, I'm sure no one will be surprised that I like to feel some sense of control over myself and my environment. Needless to say, my life is seriously lacking order right now. We are at the mercy of transport, and doctors, and radiation...we spent our lives waiting and wondering what will happen next. That is probably one of the hardest parts about all of this for me...I feel like my ability to control myself and my environment has been stripped away on so many levels, which makes the things I can control so much more important to me.

Normally, my house is the one thing I can control. When everything else in my life gets crazy, I put my house in order - it gives me a sense of calm and control so I can face the rest of the chaos. I like a neat and orderly house...not a perfect or spotless house, but just neat and orderly. I like when everything has a place, even disorganized junk. I prefer to restrict mess to one designated location, usually out of sight from company and easy to put away if the cleaning lady or visitors are coming. I like the kitchen cleaned every day and put back into place, and I like my living areas free from chaos.

Unfortunately, DH is kind of like Pigpen from Charlie Brown...a cloud of mess and chaos follows him everywhere he goes. I always joke that I can see his path through the house because of the trail he leaves behind. He works very hard to try and pick up the mess he creates and clean up after himself, but I would have to say that for every 10 things he cleans up, he messes up 12 (in fairness to DH, he has drastically improved over the past years...he used to mess up 12 things, then mess up 12 more, and not clean up any of it!). It is a losing battle for him, and it amazes me that he just cannot even see all the mess he creates, especially when I look around and it is as if big neon flashing lights point out all of the mess.

Normally, I just pick up after DH and return my living space to order. But lately, with all that has been happening, I just cannot stay on top of the mess that DH creates...not to mention the havoc Micah now wreaks on the house, and my own laziness about putting things away the past few months. We still have the house cleaned every week, but I am sitting here tonight, focusing on the mess around me. In our last renovation, we removed many of the walls on the first floor, so from the position in the dining room where I blog and pump, I can see the mess in every room of this floor all at once. The buffet in the kitchen is piled high with books that Micah has ripped that I need to repair, Maya's birth announcements that I haven't had time to address and send out, a stack of thank-you notes I've written for all the wonderful gifts for Maya's baby naming that I still have not finished or sent out, my pile of work/office things that are without a home, the drawings for our home renovations, and then a pile of....cords, technology, papers and crap from DH that definitely does not belong on the buffet. The kitchen counters are covered with bottles and jars that do not fit in the cabinets (largely because there are now things that do not belong stuffed in the empty mason jars and baby food jars). We have the oatmeal container from DH's breakfast sitting out (because he never remembers to put it away). There is a 10 foot pile of mail on the front table (we get WAY too much junk mail, DH and I are both terrible about sorting through it, and I do not even have an office or a cabinet yet to file away my things). Back before I was married, I would have just dropped most of it into the trash when the pile started to offend me and solve my problem, but DH...well, he does not like to just throw anything away without inspecting it himself. I have a feeling waking him up now to inspect everything would not be well-received.

I miss my days of an orderly house. I am certain that much of the mess we face has a lot to do with the fact that we've been living in a house that is way too small for us for several years now. We do not have a bedroom for Maya, I do not have an office, we have no storage space, so even if we wanted to put everything away, it simply does not fit in this house. It may also have a lot to do with the fact that a few months back, when I thought we were only weeks away from moving out for our renovations (and I was at the tail-end of my pregnancy), I gave up fighting the mess because I thought it would be easier to deal with when we moved.

I have to say, I'm looking forward to moving. I cannot wait to throw out some of the crap in the house. I cannot wait to have enough rooms for everyone in our family and some storage space. I cannot wait to have some order back in my living environment. Most of all, I cannot wait to have Mom back home with us so we can all attempt to take some control of what has happened to us. I am sure my mother is having a hard time with the lack of control in her life now, too, and I completely understand that.

Maya woke up on the early side this morning around 7...thanks, in part, to DH making a lot of noise snoring noises. I cannot wait until we can put Maya in her own bedroom! Micah slept until about 8:30...I tried to get DH awake to go get Micah before his yelling woke Maya again, but no such luck. We ended up bringing Micah into our room, and he cuddled with us for a while. We all moved downstairs for breakfast, and I ran around trying to get our clothing and things ready for the day.

Micah has been trying to dress himself more and more everyday. While I was organizing our swim bag, Micah decided to help get himself dressed - he pulled his swim diaper over one leg of his pajamas. Eventually, we decided to help Micah out and got him completely dressed for swim class. Today, we put him in an Elmo sweat outfit...I think he may never wear anything else again!

Once again, swim class was great. Micah is really making progress and loving the water. Now, if I could just convince him that he shouldn't DRINK the pool water, we'd be in business.

After swim class, we drove up to the nursing home. When we arrived, Mom's friends were visiting and my mom was finishing up physical therapy. When she returned, we all sat together for a while in the cafe area talking. Mom was doing great, and sporting her new purple beret. My mom decided today that she wants to shave her head - her head is itching and she just wants all the hair gone. I think it is a great idea, so tomorrow we are going to try and make that happen.

I think we finally have the lease all sorted out and in hand. The owner/agent of this property is kind of a pain in the ass...after dropping off the lease for us the other day, she now wanted to change the terms and the signatories. It took us a few hours to sort it all out, but I think we are all set to return the lease to her in the morning. I have a feeling she is going to be a thorn in our side this next year.

This afternoon, shortly after my mother returned to her room, the "customer service representative" from the nursing home came to speak to us. We gave him some feedback about our experience there, but I think other than listening and nodding, he has no authority to do anything.

After my mom's friends left, we took turns visiting my mother. My father said his goodbyes, and DH took the kids outside for a bit. I sat with my mother (and Krystal) and read the blog and a few other messages to my mom. We tried to order some cortisone cream for my mother's head...her skin is so itchy right now!

Before we all left, Mom got her Delicious kisses and said goodbye to Micah. He was cute..he said "night night" to Mom, and he also crossed his arms over his chest (the sign for "love') when she said "I love you" to him. We left mom in good hands with Krystal, and we told her that there was fruit and a sandwich in the fridge for mom (instead of nursing home dinner).

On the way home, DH and I decided to stop off at IHOP for dinner with the kids. Both were awake and cranky, it was almost 6 pm, and eating dinner out seemed easier than coming home and cooking. Maya was just happy to get out of the car and nurse. Micah actually ate fairly well - we ordered him a grilled cheese sandwich and a cup of fruit. He ate most of my eggs, one of DH's pancakes, a few bites of the grilled cheese, and some of the fruit. Unfortunately, Micah spotted the ketchup during dinner, so we put some on his plate. He loves to dip things in ketchup. He dipped his grilled cheese, and then, much to my dismay, he decided to dip his apples into the ketchup! Yes, disgusting. But Micah seemed to love it.

We made it home around 7, and we spent the evening relaxing together again. My mom called around 8:15 (she had some questions about medications, she wanted a fan for the room, and we needed to sort out the aide issue for tomorrow). I gave her answers about medications, I told her I'd call Dad to see if he could figure out the fan issue and promised I'd bring one tomorrow if they did not find the fan tonight, and I contacted the manager for her floor to discuss the aide issue. Apparently, they say they have aides covering her indefinitely right now, but they will not be using the outside company (and Krystal) tomorrow. Instead, they apparently have some companions on-staff, and will be using one of them. We are waiting to see if Mom feels comfortable with the person they send (or if they decided to terminate the sitters after tomorrow) - if my mother doesn't like the person they send or if they cancel the sitter, we'll contact Krystal and re-hire her. We've already asked Krystal if she will work with us when Mom leaves the nursing home - we are hoping she'll be able to work 1-2 days a week and fill in whenever the other aide is unavailable.

Micah went to bed around 8:30, and Maya fell asleep for the first time shortly after that. Maya woke up again a little after 9, but was back down again within 10 minutes. So far, both children have slept through the night. Okay, I'm off to try and clean the house a bit before everyone wakes up.