Pesach cleaning has started

After two people canceled on my last week, someone B"H finally showed up today. She was a good worker and I feel so much more at peace that we may get to Pesach okay. My son's room is cleaned (floor, door, door frame, walls, windows, ceiling fans, bathroom) as are many of the windows and shutters in the house.

---- this was Sunday's attempt at an update before my appointment with my son. We had to put him on oxygen Saturday night because he was having trouble keeping his oxygen sats up when he was sleeping. Sunday I brought him to the doctor and we found out he had pneumonia which was not a surprise, but the xray showed his heart is enlarged as well. Obviously that was enough to stop my update. I try not to post on the internet about my children and their medical challenges. I like to protect their privacy. But he could use everyone's prayers now. Pneumonia is nothing new to him. Needing oxygen is nothing new either, but the heart enlargement appeared marked and on both films. I am worried. He has an echo scheduled for the day after Passover. His name is Avraham Chaim Leib ben Chaya Liba.

Thank you.

Doing better!

Not only am I finally feeling better from being sick, but I got IV yesterday morning and my tingling is much much better as well. Today was B"H a great day.

I spent most of it taking care of my son who was home sick. It was nice since he was feeling well enough to be a lot of fun and for me to wonder all day if I should have sent him in. I also managed to clean off the coat hooks so now there is only one coat and one sweater on each person's hook. No more coats on the floor or sweaters that can't be found. I found some fun things in the bags that were on the hooks.

I made lunch, nothing fancy, but another accomplishment none the less. Being able to take care of my family and get my house in a bit better shape makes me so very happy.

My laundry folding helper came for the first time in weeks, so life will be easier for a bit. No more searching laundry baskets for undershirts and matching socks. Everything is where it belongs and I really appreciate it.

Tomorrow I have driving and my neck ultrasound and PT. It is going to be a busy busy day.

I need to keep my eye out of good pickle jars for Pesach. I used plastic containers last year, but I am spoiled now, after a year of pickle making in my good jars and I would like to treat myself to a couple big good jars if I can find them.

Passover cleaning and preparation have officially begun.

If it was high before, it certainly isn't now

If my headaches before were from high calcium, I am certain that isn't an issue any more. I am now totally numb and twitchy and in the middle of a calcium crash. I felt terrible last night but was so tired this morning that I didn't make it in for blood tests and am not getting my IV calcium today.

I saw my doctor to get paperwork for my ultrasound later this week and once she saw how twitchy I was she did offer to do the IV despite not having the blood work, but I told her I could wait until tomorrow. I am not quite sure why I said that. I am miserable and every movement I make is torture and so is sitting still or standing.

The great thing is, it is a beautiful day out and the kids are enjoying it. My husband is off and my misery isn't effecting anyone else. The house could use some attention, but it will wait.

Baking up a storm. Purim sameach!

It is Purim tonight and I am busy baking up bagels by the dozen to give out for mishloach manos. I managed four dozen tonight, which was my goal. B"H

I am B"H feeling much better, but my son is running a fever. He claims his throat doesn't hurt, but I really worry that I shared with him what ever I had. I really hope not. Any which way it doesn't seem that it will be much of a holiday for him which is sad. I am glad he had his school party and got dressed up on Friday.

I have been having headaches and am a bit worried that my calcium is high. Because I was so sick last week I didn't make it in for blood tests, and there are no labs being run until Tuesday because of the holiday. I am a bit twitchy though, which is a sign of low calcium, so the headaches may just be headaches. It is so hard to know.

Horray!!

I am B"H finally feeling a bit better. It seems that the new antibiotics are the right ones. My throat still hurts, but in a normal sore throat "it hurts to swallow" way. Breathing isn't hurting any more and I no longer feel like I am being strangled.

I slept peacefully last night and woke up much refreshed. I have a bit of my voice back as well.

Today I went to the ENT, which was sort of funny since I was already feeling a bit better. He didn't have anything for me to do or any changes to my care, but he was nice and he did fish a bunch of wax out of my ear.

I managed to make 22 bagels, and a batch of challah today, which was something but far from what I wanted to make. I have the meat for kreplach (meat filled dumpling type things typically eaten on Purim) defrosting and I am determined to at least get the dough made for hamentashen (triangular cookies with jelly middles traditionally eaten on Purim) before I go to sleep.

Of the bagels I made earlier this week, more than a dozen were left on the counter in bags instead of getting into the freezer. They are edible toasted, but to stale to give out, so my family enjoyed home made bagels tonight. I am a bit disappointed that I dropped the ball and didn't get them in the freezer, but the kids really enjoyed the treat.

I am still not back to myself and my energy is still low and my stamina nonexistent, but slowly in spurts things are getting done. If I don't keep moving there is no way I could contemplate catching up later, so I just have to keep going.

and I am still sick...

I am now on a different antibiotic and have found menthol throat drops that help some, but I am still in significant pain. My doctor was not happy with the way my throat looks either. I have an appointment with an ENT tomorrow and, if I don't feel better by then which is my fondest wish, that they have some good ideas. It has been almost a week since I could swallow without wincing or slept through the night and not woken up in the middle of the night because of the throat pain.

I am so tired, exhausted both physically and emotionally.

I have a bit of my voice off and on over the day, but the more I talk the faster it goes away and the more I hurt.

Despite it all I got costumes together for the girls for their Purim party at school today (I have until Friday for my son) and misloach manos (holiday gift baskets) (home made bagels, cream cheese and chocolate milk) for all of my son's school staff (all 9 of the teachers/aids/therapists who work with him each week) and lots of laundry done, so far, this week. I also attended a couple school functions and many doctors appointments and PT. It has been a crazy busy week.

I have a lot more bagel baking to do before Purim on Sunday, but the first two dozen are done and I am feeling pretty good about myself, that I did it despite how horribly I am feeling. My hands are getting a bit chapped from all of the washing (I am not interested in sharing my germs) but it is totally worth it.

It takes more than fever, pain and a lack of sleep to take this mommy down. It may effect my blogging, but it won't keep my children from being able to count on me if I can possibly pull through for them.

Still sick

I am still running a fever. My throat hurts so much that it hurt to breathe and the last two nights I woke up from refluxing over my already sore throat.

I was started on keflex on Friday and had high hopes of feeling better quickly. So far it hasn't panned out as I would have liked. I may be a drop better, but I am still feeling far from human.

This week was to have been a big week. I have nothing prepared for mishloach manos http://en.wikipedia.org/wiki/Mishloach_manot and my kids Purim costumes haven't been finished. I still have no clue what Avraham Chaim is even going to be! The girls are mostly figured out B"H, but one needs a crown and my looking until now only turned out junk that I wasn't willing to pay for. She was not happy with the home made idea... but it may have to do.

Funny enough, I am hungry, just can't swallow. I took some Tramadol last night hoping it would help the pain enough that I could sleep and it didn't even touch it.

This isn't a normal sore throat. This pain is up there with my post surgical pain and with the fever and body aches I am not being a very happy patient. I am trying not to complain, but it is hard. Every time I need to swallow, even my saliva, I measure the benefit versus just spitting it out.

The only thing that I have found that helps at all are some Luden's Lemon menthol throat drops that I had left over from before we moved here. There weren't many left in the bag when I found it and there is only one left now, which I will be using tonight in hopes of being able to fall asleep.

I am hoping to find something here with menthol tomorrow once the stores and pharmacy open. At one point we were laughing about a menthol sugar free candy (why would one want a medicine flavored hard candy?) but now am dreaming of them. I hope that they still have them and that they work as well as the Luden's!

I still have next to no voice. Talking hurts and yelling is impossible. I can't be heard unless there is quiet in the room, which is rare with the husband and children's home. I have taken to calling my husband so he can hear me, even if we are in the same room.

This too shall pass! Hopefully sooner than later.

Sick, but dreaming big...f

This is a bad combination.

I canceled physical therapy today because I don't feel better. I have a cold, sore throat and am achy from fever. While home sick I decided that I want to try canceling meal delivery starting next week. I really want to be the one cooking and taking care of my family.

I am not sure I have the strength or energy, but I want to give it a try. Right now they are sending Shabbos and three weekday meals each week, and it is a huge help. If I can't manage the whole week on my own I have a freezer full of food to use up before Pesach, so the timing is right to give this a try.

I am still limited in energy and in a fair amount of pain, especially at night and first thing in the morning but B"H PT is helping my shoulder. My range of motion in my shoulder is better and my strength a bit better as well.

I hope I am not biting off more than I can chew. Worst case there will be a lot of maccaroni with melted cheese in my children's future with them in charge of making carrot sticks. I don't think they would complain about that though!

Today is my husband's birthday. Yesterday I tried to order from a good, cheap Tai/sushi restaurant that we had both enjoyed for our anniversary, but they didn't answer the phone. I called every hour all day and left a couple messages as well. No answers and no return calls. I hope that they didn't go out of business!!

Today a friend helped me find another place to order from and we had it delivered to my friend's husband who works in the area. When my friend's husband comes home we can pick up and reheat it and hopefully it will be a nice and special treat. It is Chinese food, which could be really exciting.

We don't eat out (or order in) often, so this is an adventure and will IY"H be a big surprise for my husband.

Overwhelmed, overtired and grumpy

B"H things are okay, I just have too much on my plate. Today was my ultrasound, which B"H went well. Insurance refused to pay, but it was only ~300nis (a bit less than $100) so I went anyway. They insisted that they had a doctor who could do the ultrasound and that it didn't have to be done at the hospital, but I needed to hear that from my regular radiologist and have the one who has a good track record of finding my lumps and bumps do the scan after my surgery.

It turns out that the radiologist that insurance wants me to use is my radiologist's teacher and she was very reassuring about letting him do my follow up scans. He is a neck expert and through the hospital he is so sought out that you can't get an appointment for nine months. Oddly enough, through the insurance's clinic I have an appointment in two weeks. Those are just the wonders (and oddities) of socialized medicine.

Free and fast, you just have to know how and where.

Besides that, driving is going fine. The weather is cold and it may snow here tonight. The kids are just fine, but I think I am coming down with something, my throat hurts and I am grumpy despite eight hours of sleep last night.

My mattress topper is nice, but it isn't doing anything about my pain every morning. My shoulder, back and hips hurt when I get up despite the new memory foam mattress topper. It was worth a try, but it doesn't seem to be doing much.

My husband's birthday is tonight. I had a friend in the delivery area of the restaurant I wanted to order a special birthday dinner for him from, but for the last two and a half hours I have been getting their voice mail when I call. If I get through soon we will still get the lunch specials, but an hour ago figuring out delivery would have been easier. I am thinking that it just might not happen tonight though.

I should come up with another plan, but it is too much mental energy. We don't do take out often, and this is the second place we tried and the first one we liked. I am too tired to try to figure out anything else.

As I said, I am tired and grumpy. Things are B"H good, I am just too tired to appreciate them like I want to.

I need a couple days with no where to go and nothing to do, but as of now my calendar isn't agreeing.

Sore, tired, but here to update

Oncology was fine, getting there was more of an adventure (and more frustrating) than I had reckoned for. My very reliable driver told me he would pick me up in five minutes (from when I called) to bring me to the doctor's office for my blood tests. He didn't show up for 12 minutes. For one that put me behind schedule, but I also could have used those seven minutes at home, not sitting up by the street waiting for him!

Then I had to push my way in to get my tests done quickly since I had a ride at 9am and there was a long line. The nurses know me, and know I am generally willing to wait patiently, but it still wasn't terribly polite and I was feeling anxious.

9am I was waiting for my 9am ride to the hospital, and no one was there. 9:05am I called to make sure they knew to get my from the doctor's office and not home. I was told "oops, sorry, I meant to call, they aren't coming until 9:15am." My appointment wasn't until 9:55am, but they didn't know that, so rescheduling my ride without telling me or checking in to make sure it was okay wasn't so cool. B"H I like to be early! I had wanted to get a coffee on my way to my appointment, but that wasn't going to be possible with the later ride. Not the end of the world!

9:20am I called to see where my ride was. They said they would check in and call me back. 9:25, still no call and no ride, so I called again only to be told that the person who was supposed to pick me up forgot to.

I called a cab and left at 9:30 for a 9:55 appointment. B"H I was only about 5 minutes late, but I was 30 minutes stressed before I even got on the road.

The appointment was also a bit stressful. Basically is comes down to no good options. The RAI didn't work last time, so my oncologist thinks that it is better to wait and do frequent careful ultrasounds and stimulated thyroglobulin (cancer marker for post RAI cancer patients) tests, and save the RAI for later.

There is a life time limit on the number of RAI treatments because the radiation raises the risk of developing other cancers.

Not doing the radiation because I don't need it would have felt good and made me happy, but not doing it because it probably won't work anyway isn't as pleasant. Avoiding it for now is good, because it was an awful experience, but I wish we had better answers.

The retreat was wonderful. There were great lectures, I met some wonderful new friends and reconnected with some old one. The emphasis was on the importance and health benefits of smiling and laughter.

I got a shawl at the retreat that I am planning on sending to my mother in law. She started chemo for lymphoma yesterday and I spent the retreat worry about her and wishing she was there for the support as well. The shawl feels like a hug and this way it is a hug from me and a hug from the wonderful women at Beit Natan as well.

I am trying to figure out what else to send her. I want to make a great care package. I already sent her lotion and special gentle soap, and am hoping to keep most of the things light weight since I am shipping them internationally. I put in a pretied bandana that she had said she liked on her last trip here. Besides those things, an assortment of teas and pictures from the kids are all I have on the list to buy/make so far though.

Home!!

The retreat was wonderful, but I am exhausted. I will try to update about my oncologist appointment and the retreat tomorrow.

All in all, I am doing fine, just exhausted.