Tired, but productive and happy.

I made challah today as well as chicken soup stock. I was a bit overambitious and defrosted chicken wings and mentioned cookies to the kids... but that didn't happen. Maybe tomorrow.

Besides that I spent the whole day doing laundry. My machine takes 2 hours to do a hot wash (it heats its own water) so it wasn't that many loads, but I managed to get all of the sheets and some of the blankets washed. My helper came B"H so between her and my husband's help later, all of the beds are made up with fresh clean sheets without a mess of clean sheets waiting to be folded and put away.

I am getting sick though. My nose is running, my throat hurts and I am coming down with something. I hope it passes quickly and easily. I have no desire to be sick.

Great day!! I made pickles, marinated tofu, and did laundry.

B"H today was a great day. I had a bit of a nap this morning before my doctor's appointment. At my appointment I got everything straightened out, lab slips and prescriptions for my stimulated thyroglobulin testing next week. Picking up the injections at the pharmacy was a bit funny. The pharmacist couldn't find the medication even though the computer said it was there so she unlocked the pharmacist door and let me in the back to look through the fridge (and find the medication B"H) myself. That was a funny first.

I now have several thousands of dollars, in the form of two shots, in my refrigerator. The stuff is so precious that they gave me a nice reusable icepack to bring it home with so it was stay cool.

This afternoon I spent with my kids and then I went for my massage and reflexology. We had a bit of trouble with the table, but she did a great job and took good care of me none the less. On the way home I picked up some tofu and dill.

I have been searching for dill for weeks! All of the stores I have been to have been sold out, so dill was an exciting find. Since I had the dill I needed to make pickles. Somehow the cucumbers were not patiently waiting for me though. What was left was okay, though not great, but most of them were eaten. After preparing two jars worth of dill and peeled and sliced garlic I discovered I had half a jar worth of cucumbers left.

I had a good laugh at myself for not checking first and filled the rest of the jar with carrots to pickle. The second jar is waiting for my husband. Hopefully he will bring me home some more cucumbers.

I managed to slice and marinate some tofu and have it baking in the toaster oven now. I have some huge tofu fans in my house and am planning on sending baked tofu and pasta with vegetables and some soup for my son's lunch tomorrow.

In between it all I managed to throw in some laundry. I am down to one load waiting to be washed.

I feel amazing. I am tired, I am sore, but I got out of the house twice today and got plenty done in the house as well. I love love love days like today.

I am just so tired

I got up this morning to see the kids off and deal with food for lunch and answer some phone calls. At noon I couldn't keep my eyes open any more so I set an alarm for 1:15pm when the girls walk in and went to lie down for a bit.

Though I managed to greet them and even give them directions on what was for lunch and remind them to turn off the oven, I just couldn't wake up enough to get out of bed. Yesterday just wiped me out. I make a point of being awake and ready to great them when they come home from school, so this was upsetting to me. They took it in stride though. Came to me to ask questions and show me things and didn't seem fazed that I fell right back to sleep.

I woke up for real when my alarm went off to get my son off of his school van.

The girls had eaten and done their homework while I was sleeping. I am not sure if I should be upset that I was sleeping while on mommy duty, or proud that they managed so nicely on their own.

Either way, I am just exhausted.

Tomorrow I have a local doctor's appointment in the morning and reflexology in the evening. I still have to get a babysitter for the evening appointment.

For the record, according to the lady at social security when I called today, the wait for back payments is 60-90 business days. 90 business days is a bit more than four calendar months. As much as I hope she isn't, I am sure she is right. I should stop my daily bank account balance check for a while because there is no hope of seeing the money before March.

Maybe plane tickets will be cheaper by then as well.

My oncologist and I agree

That we don't know what is best to do. She has decided to present my case to a panel of doctors next week and I am going to do thyrogen injections and stimulated thyroglobulin (my cancer marker) blood tests next week as well. Between the two we are hoping to make a more informed decision on what to do.

My oncologist agrees that the radiation failed me last time and jumping into it, since it is protocol, may well be pointless. Since we may well need it again in the future (it works better on spread outside of the neck) it may be better to "save" the treatment for later, but protocol is to do the treatment if tumors are found. Not doing it isn't so simple either. Stray cells it may well take care of in the neck, so if that is all we are down to and there are no other tumors we may have a case for using the RAI again and just zapping what is left and not doing the treatment could well leave the cancerous cells to grown and multiply freely and become tumors.

I just don't know. I want it all gone, but I don't want to go through necessary or useless high dose radiation.

We shall see if next week brings more questions or more clarity.

Next up oncologist and parent teacher conferences in one day!

I can't say I am looking forward to either, not that I am expecting anything bad, but it is going to be a long day. The closer I get to the RAI, the less I want to do it. I wonder what the oncologist would say if I told her I wasn't willing.

Another round of RAI would increase my risk of other cancers, mess up my blood counts and make me feel awful for months, mean no more babies for at least another year (no, I am not sure I should have more kids with my other health issues, but I am not getting younger and it stinks that radiation has a say in this), cause swollen and painful salivary glands and a dry mouth for a year or so after the treatment, mean a week away from my family and I don't have anywhere to go after the hospital before I am allowed home the time, and just royally stink. The topper is, it may not even touch the cancer in my neck. It has a bad track record in general and already failed me once.

Parent teacher conferences will be much more pleasant I am sure. I am in touch with the teacher often enough that I don't know what the point is in shelpping to Yerushalayim to talk again. I will go because it is the right thing to do, but I am in a mood right now, and the idea of a second trip to Yerushalayim in one day, for my son's parent teacher conferences 11 hours after my oncologist appointment, isn't make me less grumpy.

Sigh.

In case you are wondering, I certainly seem to be

90 business days from my US disability approval date would be Tuesday March 8, 2011.

Now we know.

I still hope that they meant 30-90 days, not business days for my deposit. That would mean Jan 31, 2011. Either way, it should be here in plenty of time to buy tickets to go to the US this summer, though the price of the plane tickets could well go up.

I am not feeling great, though better than before B"H, and since I am not sleeping well I find my brain stuck on odd things, like this one. Does it really matter? No! Will we have the money (God willing) exactly when we should have the money. Yes! Do I want to know what is happening and plan my life even though I am clearly not in charge (and that is a good thing, really)? Yes. Most certainly yes.

It is hard to let go, know I am not in charge and go with the flow of life and God's plan. I am a planner. I like to know in advance what is coming. I check the weather and have clothing planed in advance. I like to know what meals we are eating when.

Being sick has forced me to drop a lot of my planning and control over my life. It doesn't mesh well with my inner wants, but this trip I still seem to think I can plan, which is ridiculous. I can't plan how any of us will feel, the weather, if and when the money is coming, and if the trip can and will actually happen. I don't even have a radiation isolation date yet.

Life is good, I am happy, but I am not in control. Learning that is a process. Even though I "know" it I seem to need a lot of reminders, and I get them. I keep wondering if I learn completely that I am not in control and learn to be patient, will the lessons keep coming or will life flow along a lot more easily?

I am doing a bit better today B"H

I am still not okay, but definitely doing better than yesterday. It seems that this will take a bit to recover from.

The Israeli passports that DH brought the girls to Jerusalem to take care of on Monday arrived. We only have my and my son's Israeli passports to take care of before we leave. Of course we still need the money to buy the plane tickets before we can go anywhere. We are now 52 days down out of the 30-90 days for the deposit to get to my bank account. I am starting to worry that they might have meant 30-90 business days though. I am tempted to calculate out 90 business days and see when that would be.

My six year old has a stomach virus. She has been vomiting and has fever, but she is happy and full of pep. Right now she is sweeping my living room floor. No, no one asked her to, she is just keeping herself busy. Before the started on the floor she picked up and put away all of the books from the couch. I have to come up with a prize for her, but certainly not a food one today!

Shabbos preparations are coming along nicely B"H. We still have a bunch of baths to do, but everyone seems to be cooperating nicely and happily.

I hope to never do that again

I fell asleep last night without taking my medication for the first time in the 21 months since my surgery. I took no calcium, no alpha D3, no prophalactic antibiotics, nothing at all.

I couldn't get out of bed this morning and I didn't realize why until I dragged myself out of bed so my husband could leave for work. Until I suddenly realized I assumed it was because busy day yesterday.

Eventually I took my medication, but I am a mess. I am numb, tingly and having muscle cramps like I don't remember having for a long time. I hope I can recover from this quickly. What a mess!!

Despite it all, it was my daughter's 10th birthday tonight and we needed to celebrate. I gave her the clothing and gum I bought her yesterday evening and she loved and appreciated it all B"H. We also had a special supper, which I have no idea how I pulled off. I threw ingredients for bread dough in the bread machine and rolled hotdogs and ketchup up in the dough, egged the outsides and baked them. Along with some french fries, supper was a real hit.

We had a good day, even though I couldn't stand anyone touching me and moving, standing, sitting are all torture. I still managed to be mommy and get done what I thought was important. The kids knew I wasn't feeling well because I couldn't let them lean or sit on me, but they certainly didn't suffer from it.

This isn't an experiment I would have done on purpose but it is good to know that, while miserable and probably not terribly safe, missing my medication didn't kill me. Thank God for that!

Good morning sunshine!

Today was a bright sunshiny day. I was awake before 7am, had a nice morning with my kids, made it to the doctor's for my blood draw, did some grocery shopping and made a nice lunch.

After cooking for lunch, before kids came home, I got a quick nap. This evening I went out for massage and reflexology, did a bit of shopping for my daughter's birthday and now I am home, exhausted and happy.

Today was a wonderful day.

Days like today give me hope that normal, or something close enough to normal, could exist again.

Need to reboot

Today wasn't a bad day. I read to my kids, had some good snuggle time with them as well, found a way to let my almost 10 year old go to a wedding in Jerusalem despite my worries having her travel so far without a parent (she had a great time and got home at a reasonable hour even) and did bedtime on my own.

I am still exhausted from yesterday, so I spent the morning sleeping. I did not make it to my blood tests, so tomorrow I must and then I will be praying my results are ready before my oncologist appointment next week. I think they should be, but I hate pushing things off. I also have my second reflexology and massage appointment scheduled for tomorrow. I am looking forward to it, and hopefully I will remember to go.

It is a tossup whether the highlight of my day today was the time with my children or eating the cheese blinzes that someone sent over tonight after everyone was in bed. They were really good. I guess the kids probably win, but the cheese blintzes were nice.

I hope everyone else had a good day too.

No pickles, but I did make lunch!

We had tuna noodle casserole for lunch. It is a lunch my girls love and I made it all by myself.

I also had a doctors appointment and got lab orders and prescriptions that I need and took my son and me for passport pictures. His pictures are much cuter than mine, but that is to be expected.

I don't think I look too swollen but my last passport pictures, from 7 years ago, are still what I would prefer.

My husband took my girls to Jerusalem to fix their Israeli passport applications, which our local office messed up, which means I didn't have my little helpers to keep my son safe and entertained. My youngest daughter is usually his playmate and without her here I found myself working hard just to keep him from leaving the house (I failed once, but B"H got him back easily while he was just outside the front door and after that I locked the door) and safe. He was not cut out to be an only child!

I wonder if oldest children are more used to entertaining themselves, so they do a better job at it, or G-d just sends the ones capable of playing on their own first?

So far we have 6 of the passports we need and four more on their way. We only have two left to apply for. We are definitely making progress.

I must must must be feeling better before we go though. If not I will be staying where ever we are and sending the kids and husband off to have fun, and that just doesn't sound like fun for me. I am the only driver, so it would be more fun for all if I was up for driving.

All in all, we have six months until I need to be in tip top shape, or at least feeling more useful than a lump of play dough at the end of the day. Play dough is fun, and it has its uses, but feeling human would be much appreciated.

Sorry for being so down.

My posts haven't been my typical cheerful me. I have been tired, hurting and overwhelmed. It hasn't been as much fun to be me as it usually is, and I am willing to wager that reading me hasn't been much fun either.

Today was another hard day after another night lacking sleep because of heartburn but it was filled with bright spots. I got good news about one of my daughter's health issues and I got out to my nephews engagement party.

Despite the fact that it will reduce my calcium absorption I am not on Prevacid, and acid blocker, to help stop the reflux. Just the idea of a full nights sleep is enough to make me grin like a Cheshire cat.

Even though I still don't have my disability money (they said it would take 30-90 days and we are on day 49 now, so getting there I hope!) the prices on the airplane tickets I want have not gone up either. I also ran into my old doctor, from the states, at the engagement party. It turns out he is the first cousin of my nephew's new FIL. That makes him related... and made it much easier to ask him for lab slips for my blood tests when I am in the states this summer. I now have his office number and one thing off my head.

Progress!!

A friend is doing her best to find me contacts for a bungalo to borrow/rent when we are in the Catskills. Even if it doesn't work out, it is nice to know she cares and is trying.

I think I need more sunshine. I have been feeling down. My goal for tomorrow, besides doctor's appointments after dark, is pickles and sunshine.

Insomnia...

I am so so tired, but when I got to sleep I either wake up in pain or with heartburn and find I can't fall back to sleep.

Last night I fell asleep before the kids, thank God for my husband! I was asleep from 7pm until midnight, with a brief waking when my husband put my son in my bed at around 9pm. At midnight I had to have my husband move my son (he wasn't getting his night feeding in my bed) and then I was up until 3am with heartburn.

Right now I am too tired to get the things done I need to do to go to sleep. My son's lunch needs packing and I have to get my daughter's papers together for her tests in the morning. I have to find something to eat so I can take my night time medication before I go to bed.

It is ridiculously late and I am so frustrated with myself. My sleep cycles are a mess. I have to get them back on track. I think if I was getting more sleep, and sleeping through the night my energy level and my memory would both be improved.

I feel like I am pushing through a physical and mental fog all of the time.

My brain is gone, totally gone.

I slept through my 7:30am alarm. My husband got the kids out just fine, early even, but I was supposed to call the lady who was supposed to come and clean and make sure she got up and it didn't happen, so she didn't come.

She said she wasn't feeling well and needed to go to the doctor anyway, but I was supposed to have called her.

Then at 4pm I realized I had missed my 2:30pm physical therapy appointment.

My alarm went off at 2pm to remind me and I couldn't even remember what it was supposed to be reminding me to do.

I got a phone call at 3pm telling me there was a cancellation with my son's gastroenterologist and asking if I could come at 5:30pm. We happily took it, and after his appointment we did a bit of grocery shopping. I got out, despite missing my PT appointment. The kids had fun, but my son was a bit hyped up from the allergy medication he is on and it was an interesting and exhausting experience.

We got home at a little before 7pm, but I was so wiped out that I looked at the clock expecting to be running late for bedtime already. It was a huge surprise to see that we were right on time!

It has been an exhausting week, but surprisingly my numbness isn't terrible. I am tired, I am sore, but my low calcium signs are absent. That is really amazing!! I am very very thankful for this reprieve.

If only I could find my brain I could push through the exhaustion and do what I need to a little bit better.

Whirlwind day

I had trouble sleeping last night but B"H I made up for it this morning. I am glad I set my alarm to leave for my appointments, otherwise I would have certainly slept through them! I got prescriptions from my sons pediatrician and showed my doctor my arm. She started me on antibiotics because she thinks I have cellulitis again though I highly doubt it!

This would mean that the last three times I got the flu shot it gave me cellulitis... how likely is that, short of the nurse spiking the injection with bacteria. I injected myself twice a day with blood thinners for almost a year and a half without a single injection. This just doesn't make sense.

Probiotics here I come!!

I had my special needs support group tonight instead of Sunday night. It was rescheduled, which was fine, but I am totally wiped. After traveling to Jerusalem with my son yesterday I really should have just stayed home and rested today.

PT is tomorrow. My PT was so confused to see my name on her list, since I was discharged a year ago, that she called to make sure it was accurate. She thought that maybe they scheduled me last year for this year by mistake. It was a funny conversation but she was very sorry to hear I had surgery again.

I got in touch with the lady who was supposed to help on Fridays the last two weeks, and she wasn't well but she is hoping to come tomorrow. Her goal is 9:30am, which in the past has meant 12-1pm which would be perfect. The girls would be here for most of the time she is here to work with her, make sure things are put away in the proper place, help find any cleaning supplies she needs and she would be here when I need to leave for PT. She may not be good at arriving on time, but I would trust her with my house and kids and it would save me the trouble of looking for a babysitter or farming the kids out to neighbors for the afternoon.

I am cautiously optimistic.

I am also thoroughly exhausted, so good night all!!

Busy busy and busier

There is no rest!

For better or for worse, I am exhausted. Some of it is the normal exhaustion of having children, some is being post op and some is the crazy running around I have had to do lately.

My son and I (finally) got our flu shots Sunday, for what may end up being out last time. I have a red swollen hot area about 3" across (in a nice neat circle). It looks just like last years, which the doctor declared cellulitis and put me on strong antibiotics for.

I am thinking it wasn't.

My son also got "cellulitis" from his flu shot last year, but he also got pneumonia two days after the shot, so he was on antibiotics and steroids and we weren't too concerned about his arm. It was being treated any which way.

This year his arm swelled from his shoulder to his elbow. The whole thing is red, hot to the touch and 25% bigger around than his other arm. You can see that it is red and swollen from clear across the room. We weren't able to get an appointment with the ped locally, since he was only in town when my son was in school, so we had to meet up with him tonight at the emergency room of the hospital he works in in Jerusalem.

To his credit, it was the fastest ER visit we have ever heard of, in and out in 15 minutes or less. He has no idea what it is though, so he is on some hefty antibiotics, plus steroids and antihistamines. His ped gave him the first doses while we were still in the ER, but B"h he let us leave after that.

So I had a trip to the ER, which though it was only 15 minutes in the ER, I was out of my house for three hours with the travel time. Then we came back and I had to go to the only pharmacy that was open at that hour that would take my insurance, all of the way on the other side of my city.

I try not to make this blog about my son's medical things, since his privacy is important to me, but today was totally exhausting. DH was working, I had to arrange babysitters for the other kids and I just wanted to be home, in my bed, taking a nap.

But we push though! He gives us the strength to do, even when we think we don't have it. For our kids anything is possible, and not just possible, easy, until we are past it and feel in our bones how tired we really are.

On a plus side, we had some awesome french fries from a vending machine while we were at the hospital! In 50 seconds, from the time you pay, the machine fries them fresh and dispenses them in a cup. It was awesome. There weren't enough in the cup to make me feel guilty even if I had eaten them on my own and AC really enjoyed them so I didn't get many at all.

I will not be going back for french fries, but it is nice to know that there could be something nice about a hospital!

Yesterday I wanted to post about my kitchen cabinet cleaning spree, which I am really happy about. My baking cabinet, where I keep my cocoa, sugar, flour, sprinkles, baking powder, etc, was in a disarray. It is a cabinet over my kitchen cabinet, so a lot of reaching up which is hard for me, but I did it and it looks ever so much better and it is infinitely easier to find all of my bottles of flavorings and I know how much baking powder I have again.

I also managed to go out and buy the kids more winter sweaters and long underwear, since winter has finally hit!!

I have been busy, and mostly in a good way that I am happy about. Tomorrow I start physical therapy and in the crazy of this evening I didn't arrange a babysitter. I hope that I manage it, or I will have to bring all of my kids with me, which could prove to be very interesting.

It is raining!!!

I am up listening to the beautiful sound of rain pouring down after a long long stretch of drought. This is the first real rain we have had since last April. It is such a wonderful sound. Especially today, it is so pure, clean and refreshing after two days of yellow haze of sand storms.

I feel like my situation has been a lot like the weather. I have such a thirst for life and like the plants and trees until now, I have had no energy to live.

Right now I am soaking up and revering in every task I manage to do that I couldn't the previous week. I am also pushing my limits to such an extent that am having trouble keeping up with my blog.

B"H I am doing okay. I have a lot more to update, but no more energy though. The rain has stopped and I am going to get some sleep.

Not again, yes, again.

Two weeks in a row the lady I hired to come in the early morning on Friday and help get ready for Shabbos has canceled late Friday morning. Last week it was a forgotten appointment. This week is is sick. I feel bad for her, but I am also frustrated.

It leaves me with the choice of pushing myself into major pain to have things ready the way I want them, or lowering my standards. I have a lot of experience with both.

It is so nice when she comes. A couple hours of an able bodied willing worker makes the difference between pushing to get the house spotless and in order and getting there in an easy beautiful way.

For now, with a bit of push, my kids are helping and we will IY"H get there together which is also worth a lot.

On my own.

Today was the last day of vacation and we did just fine. In the morning, before my husband left for work, he took the girls for their Israeli passports. So we managed to get both sets of passports done for the girls without them missing a single day of school!

This afternoon I managed to finally deal with getting the gum off of my skirt, which has been sitting in my freezer for weeks waiting for me to have strength to deal with it. I did several loads of laundry and got all of my kids bathed and to bed on my own.

I am exhausted but happy.

I have some ironing to do before bed and am praying hard that the lady I hired to help with the house actually comes tomorrow, because I am done. Vacation was good, but now I need one.

Next week looks very busy, but some of it with very good things. Saturday night I have a bridal shower for a good friend's oldest daughter. Sunday is my special needs mother's support group. Monday evening I have a massage and reflexology scheduled, which I am hoping will help with my pain and Wednesday I am scheduled to start physical therapy.

I am taking care of myself. That I am. I am determined to do what ever I can to feel better and get some function back. I need to schedule a bit of rest as well, but I am tired of resting.

Last night of Chanukah

Holidays are so bitter sweet. This year we B"H did a great job, I know it because the kids are bemoaning its end. My kids love school, but they enjoyed vacation and want it to continue. My oldest even commented on how busy they were and how many trips we took, and how she still had time at home and to visit with her friends.

It was B"H a great balance.

I am exhausted though. I need them at school already.

Hopefully my husband is bringing the girls to get their Israeli passports tomorrow morning and while they are gone I have plans for a nice nap. We managed to fill out the forms and pay online and we already have their pictures, so it makes sense to do it while they are on vacation, instead of pulling them out of school.

I may not have the money for the tickets yet, but I am determined to make this trip a reality.

Falling apart

It has been a busy week, too busy.

Generally I hate to complain about my kids, which is easy since I have very little reason to. They are B"H wonderful kids who are the light of my life and keep me smiling even when I am down.

Right now, after putting so energy and much effort into make their vacation special and trying to keep them from being stuck home bored this vacation, I am ready to send my girls off to boarding school.

I don't see that getting them out of the house made a big difference in their vacation behavior. As a mater of fact, they are bothering each other, taunting each other and hitting each other, none of which they generally do!

I am at my whits end. They are usually great, gentle, well behaved kids who have so little sibling rivalry that I have no experience in this. The "she hit me" "no she hit me first" thing is insane, or at least making me insane.

I am too tired and run down for this. I just can't do it. I actually told them tonight that I am putting in notice for tomorrow, if they hit each other I will be spanking them. I have spanked each of my girls once or twice in their lifetimes. I am not a proponent of spanking. I don't see how spanking them for hitting makes any sense, but I don't have energy to come up with a better solution. We have done time outs. We have sent them to their rooms. We have made them apologize. We have worked on keeping them away from each other. At 12, 9 and 6 they are capable of keeping their hands to themselves. They managed it until this week.

Can I blame the sugar from the donuts? If I can there is hope of life going back to normal and not hearing high pitched little girls shrieking soon.

I just need a nap. I am tingly, having muscle cramps and keep on falling asleep where ever I am. I did B"H get a nap today, but it wasn't enough and I feel like it never will be.

I don't have energy for this now. I don't have the energy to be upset or to come up with a better solution to their fightings.

I just want them to stop.

Sibling day

Today was sibling day at my son's school. We left bright and early and were there until lunch time. The kids had fun, they ate, did an arts and craft project, and sang Chanukah songs.

I went too, since there was a meeting for the parents of the children in my son's class. It was nice to see the progress they have made in building and watch the children interact.

My son wanted to come home with us, but there was only room for four of us in the cab, so my oldest went home in the wheel chair accessible van that usually brings my son home. It was really cute and funny. The driver was very gracious about it and best of all, no one had to wait in the (long awaited, much appreciated) rain to get my son off of the van today!

This afternoon we ate donuts, my kids played with the neighbors and we had some nice family time after we lit the Chanukah menorah.

I am wiped out and seriously wondering how I am going to get through the day tomorrow. I have to have a nap. I am running on less than fumes and feeling more than a little broken.

I am off to bed now but we are leaving bright and early tomorrow morning to my cousin's son's bris.

Sunday was #1

Sunday is always the first day of the week, but this Sunday was also just a wonderful day.

I had trouble sleeping at night, so it was odd that I woke up bright and early ready to face the day, but wonderful as well.

I started my morning with some one on one time with my son. I got him dressed and prettied up and ready for his van. He was done with a good 15 minutes to spare and my husband was able to daven (pray) at his leisure with that task off of his head.

By the time my son was on his way to school my oldest was up. She wanted to do "something" so once she was dressed she started on finding the broken crayons and I instructed her on turning on the oven and getting together the things she needed to melt them into crayon cupcakes.

It B"H went really well and we have one cleaned out drawer and six crayon cupcakes which are great for multi colored leaf rubbings amongst other fun.

By 9am all of my girls were up and I let them know that if they were dressed and davened (prayed) by 10am I would take them out for an excursion. That got things going quickly and everyone smiling.

By 11am I was showered and ready to go. They were waiting eagerly, with smiles on their faces. We had a fun trip. First we went to the paper goods store and bought new crayons, markers, oil pastels, tape, glue, notebooks, etc. They were each given a budget and a bit of direction but they got to make their own choices and it ended up being a fun lesson in math, budgeting, priorities and for me an insight into how their brains worked.

One got little fun things, one only two big things, and one refused to spend it all preferring to ask Grandma instead if she could save a good chunk of it toward the digital camera she has had her heart set on for months.

After that we went next door to the post office to try to track down my missing package. I was prepared for a big ordeal for naught. We walked in and there was no line. Standing by the clerk I could see the shelves of boxes in the back room and one, right in the middle, had my name written on it in 3" tall letters.

That certainly made finding my "missing" box pretty simple!! It was the box with my son's winter clothing, which I had been anxiously awaiting. Generally boxes take 1-2 weeks to get here, but this one left the US close to a month ago. I was beginning to wonder if it would get here.

We have also been wondering when winter would get here... so now we are prepared. The weather forecast for tomorrow says we might have some rain showers and a high of "only" 60 so the box arrived right on time.

We walked a couple stores down from the post office and got ice creams for everyone before we called a cab to go home.

By then I was flying high, happy I was able to get out and have such a fun excursion with my kids. As I put up a pot of pasta for lunch, I expressed my desire to make potato latkes with them in the evening. I had high hopes of the day continuing as it had started.

By the time my husband returned home at 4pm I more prepared to cry in exhaustion and pain in bed than peel and grate potatoes or stand by the stove frying latkes. One of the kids asked me when I was making them and I just didn't know what to say.

Then I looked on the counter and saw that food had been delivered today. It was a big tray of pasta with sauce and a second tray of home made, ready to heat and serve, potato latkes.

I don't think that a meal has ever been sent that reduced me to actual tears of gratitude before. Grateful I am always, but this was just 100% perfect.

Awake

I still feel like I could sleep for days, but it is vacation and my kids need me so I am not hibernating. Shabbos was nice. I had good quality time with the kids and I did get a nap, but it is over. Monday is sibling day at my son's school and I am supposed to be bringing my kids. Tuesday is my nephew's bris and we are all hoping to be there.

My mother asked me to get the kids gifts from her. We generally only do money and books, but she wants me to get them arts and crafts supplies to keep them busy over their vacation. If it weren't for the fact that I have to do it, it would make a lot of sense and be a help.

I still haven't managed to make potato latkes or home made donuts. I think the donuts we may well skip, since we had good bakery donuts, but if I don't go out shopping, like my mother would like, tomorrow I might be able to do latkes.

We shall see!!

I am certainly pushing it this week and starting out exhausted from last week I am just not sure how it will work. I am not sure what to do to make it more sane either.

Recovery day?

It is a bit hard to rest and recover, both from the surgery and from my day yesterday, when all of the kids are on vacation, my helper called this morning to cancel, and my husband is working. I have been needing a nap at least once a day, even with my low low key schedule. After our trip to the consulate yesterday I am desperate, but it seems it isn't meant to be.

Some how, looking at cute faces, trying to get through the crisis that one little boys can make (thank God for his doctor's cell phone number on my speed dial!), and getting ready for Shabbos I will keep my eyes open, a smile on my face and remember how blessed I am.

I think I can. I think I can. I think I can.

The way I am feeling right now, if I close my eyes once the Shabbos candles are lit and don't manage to open them again for several days I might just be what my body needs.

Passports, donuts and more Chanukah!

Somehow, miraculously (it is that time of year!) we managed to get my son on his van and everyone out of the house in time to get to our 8:30am appointment at the US Consulate for passports. We had the forms printed and filled out, pictures done and ready and all of the documentation ready which helped the appointments B"H go smoothly.

The only hitch was I am still radioactive enough to set off their metal detectors. Flying after another treatment should be an interesting experience. I am guessing that extra time in the airport better be factored in. The consulate guards were nice about it, considering my obvious scars and my nice innocent look. The first set didn't even want to wand me, but the supervisor had them after they had told me I was fine. :) The wand declared me clean, which of course I was. Radioactive I may be, terrorist I am not!

I had another annoying run in with the Social Security agent. I went to him to take care of paperwork to get my kids payments on my SSDI claim as my dependents. He insists they each have to have their own bank account, and set me into a bit of a panic. I tried setting up bank accounts for them from here but it was not possible.

In the end I spoke with a Social Security agent over the phone who was courteous, smart and very very helpful. She pointed me to the manual and code which allows the kids payments to be put into my account, as long as they are my kids, in my care, living in my house and the money is being spent on them.

I emailed the worker from the US Consulate and oddly enough their automated email now says that they will get back to me within 10 business days, as opposed to their old automated email which said up to 5 business days. I hope the right person eventually gets and understands the email though, no matter when they decide to open it.

Speaking of opening things, and deliveries, while we were at the Consulate our driver picked up more night time diapers for my son from the person who brought them from the states for us. B"H for kind helpful people. Having diapers that work and his bed dry in the morning is a huge huge help/relief/miracle. Not needing to change his sheets, bath him, etc before he leaves the house is a huge help in the morning and not needing to remake his bed every single evening is a huge help as well.

Right around the corner from where the diapers were there is a new and exciting American style bakery which is selling some much raved about donuts. We had him pick some of those up for us as well! As usual, he was a great sport about our odd requests. I think he actually enjoyed donut shopping for us.

After lighting our Chanukah menorah tonight we had a family party. The six of us enjoyed our special donuts and chocolate milk. We gave the kids some new books as well. Books are a favorite treat here and I had to pry them away from them for bedtime, so we will likely get some vacation entertainment out of the books still!

It was a long but very happy and productive day. B"H

One candle, one month, one happy lady.

Tonight was the first night of Chanukah. We made a make your own pita pizza party at the home of a friend of mine who works near my husband's work. This way DH was able to join us during his break and we got to celebrate as a family.

It was fun. The kids were cute. It was nice getting out, seeing friends and socializing with an adult in person. Her baby is adorable. We had lots of fun making him laugh and smile. I love a smiley smooshy baby!!

I am also one whole month past my admission date for my surgery. Tomorrow I will be one month post op! It feels like it was absolutely forever ago.

I am numb, but not worse than yesterday. Mostly I am just tired enough to cry.

In the morning we go to the US Consulate for passports for the girls and to deal with Social Security. The paperwork is all filled out and ready to go and everything is together. We just need to get food together and everyone out the door by 7:30am, after getting AC on his van at 6:55am. It will be a whirlwind of a morning, but then we will have the first, and one of the more difficult, parts of our journey behind us. B"H

I am stuck in the comedy show that is my body.

For weeks I rested and dealt with pain. B"H The last couple days that got more bearable so I started doing the things that were most important and only I could/would do, like parent teacher conferences and cleaning off the buffet.

Now my calcium is so low that I am uncomfortable in my skin. I am still too weak and tired to be ready to go find a doctor (mine was done for the day before the results were in), show them what is going on, get the paperwork for the IV calcium, go to a nurse to get the IV started and sit in a chair with no arm support for 45-60 minutes for the IV.

So I am sitting here, twitching, numb and a bit down. I have far too much to do this week to feel this way. It is like low level electric current is running through my body and it just isn't okay.

On the other hand, I did have a productive day. I made it for my blood tests this morning (which showed my calcium low and my phosphorus quite high), went to my PCP and got prescriptions that need to be filled, lab slips for blood tests, and referrals for PT and new orthotics. It seems one of my orthotics was thrown out recently and I didn't notice right away because I only wear them in the shoes I wear out of the house and I haven't been leaving the house. I don't need them in my Crocs which I wear for slippers.

I may be throwing in my pride and leaving my house in my bright pink Crocs because the foot pain from walking around without my orthotic is worse than the embarrassment of being seen in Crocs, even bright pink ones. I just hope I don't run into my children's teachers, or their principal, who happens to live across the street.

Tomorrow night we are planning on bringing pita pizza ingredients to a friend's home and having a Chanukah party there. She lives near my husband's work so he can come over to light menorah with us during his break. It worked out last year. It does mean preparation on my part, as well as getting the kids out and back home on my own followed by bedtime on my own. I am nervous about how I will be feeling, but it is the only way I can figure out to make it work and have my husband with us despite his work schedule.

I am praying hard that I am feeling better by morning. Anything is possible. I really need to be feel better to get through the next week of holiday, the girls vacation, consular appointments to get passports, my cousin's son's bris, and a day at my son's school for the parents and siblings. After weeks of staying home resting I am back to a full schedule, which would have knocked me down even if I wasn't post-op. I am not sure how this is going to work.

Four weeks post op!!

Today I am officially four weeks post op! I have B"H come so far and am starting to feel like a human being again. I still have very little stamina and quite a bit of pain, but slowly even that is getting better.

It has been two days since I took any narcotic pain relievers. It is still the only thing that makes the pain go away, but even with the pain here I can function pretty well and am not having too much trouble sleeping. Having the pain reminds me when I am pushing too hard, what is uncomfortable for my shoulder, and that I need to get into physical therapy.

I am not convinced that pain is all bad, the way the narcotics make me feel is though. The dizzy head, the upset stomach and the bad taste in my mouth I hope I am entirely finished with.

My scar is healing very nicely B"H. The old part is stretched/stretching and a bit funky looking, but the new scar (which was on part of the old scar, opened and re-closed) looks really good.

Parent teacher conferences were tonight. It was a very pleasant evening. The teachers had nice things to say about all my girls. The teachers were sweet and pleasant, just like they said my daughters are. I know one of my children's teachers because an older child had her before, but the other two were new to me and I am B"H happy with them all.

I didn't manage to go for blood tests this morning, I was up but didn't have the strength. I have to go tomorrow. I really don't have a choice. I also have a doctors appointment in the afternoon, I need prescriptions, so I will be leaving the house.

When I was looking for my shoes to leave my house today I realized that I hadn't been out of my house since my blood work the beginning of last week! No wonder why I was stir crazy. This week we are getting back to real life. B"H it is a good thing. It may be exhausting, but is certainly healthier!

I really really need to leave my house.

I feel like I have been here, in my chair or in my bed forever.

Tomorrow I have to go out for my blood tests in the morning and parent teacher conferences in the evening and the timing is perfect. I need the push to get out. I am sure I will feel better once the sun has hit my face and my lungs have had some fresh air. Through the open windows is good, but not the same.

The open skies and walking on the holy land are a balm for the sole.

I have another excuse to make sure I leave the house Thursday. Our appointments at the consulate, to get the girls new passports, are on Thursday.

Trip planning is keeping me occupied. Waiting for my disability money to hit my bank account (which could take another month or more it seems) is giving me plenty of time to compare plane tickets and prices on everything and figure out how to do this as frugally and sanely as possible.

I have also been cleaning out my email inbox. In doing so I found some exciting things including an email from my father in law of him singing his niggun for Achas Shealti. I would love to share it with everyone, but I can't figure out how to upload it anywhere. It is a mp3 and I can only successfully upload pictures and videos.

It is taken from Psalms chapter 27 verse 4. One [thing] I ask of the Lord, that I seek-that I may dwell in the house of the Lord all the days of my life, to see the pleasantness of the Lord and to visit His abode every morning.

It was refreshing and calming to listen to, like a bedtime song with a really strong and beautiful message. As much as I know that that is the one thing I need, hearing it over and over again certainly helps sooth my spirit.

Feeling pain - second post tonight

Last night I couldn't sleep. I lay awake thinking about my pain and an odd thought popped into my head, until this surgery my shoulder was numb. It was dropped because of cut muscles and nerves, but I had no normal feeling in it. It itched, but if I scratched it just itched more, I couldn't feel the scratching. It was like this from the back of my head, down the right side of my neck, my upper chest, and down my arm to half way between my shoulder and elbow.

Now the numbness is a lot less. My theory is that it is less because the [now cleaned out] scar tissue was pressing on nerves. My surgeon claims he had nothing to do with it. He has no idea why the feeling would have come back with what he did. The numbness was an expected part of my first surgery because of the nerves they had to cut through. The point is, it is back. I am still numb on one side of the back of my head, my neck and my shoulder itself, but not my arm.

So in the middle of the night I had a scary though that maybe my shoulder has "hurt" this whole time, I just couldn't feel it. Maybe this isn't new from my surgery and won't be going away. Maybe it won't get better.

Maybe the numbness was a blessing that I didn't even know how to fully appreciate.

So many times He blesses us with something that seems wrong or hard or odd but is really for our best. Most of the time we aren't ever given the opportunity to understand why. Maybe the numbness, that made me nutty and itchy, was saving me from the pain.

Friday was B"H a great day!

I am getting back into the swing of life.

Friday I did sleep in the morning because I was so tired that I couldn't keep my eyes open. In the afternoon I managed to lift my arm over and over enough times to not long brush out my oldest daughter's waist length hair for her after she shower, but braid it as well. Moving that shoulder causes pain, but not like it used to!!

In exchange for my hair brushing and braiding services she happily made my lemon pie filling mixture for me. She read the recipe, put in the ingredients and did the stirring while I made pie crusts and meringue. We made a great team.

The kids cooperated wonderfully to get us into Shabbos, everyone bathed, the house clean and the food cooked, on Friday. They were great. DH was working, and by the time he got home from work we were mostly ready.

Shabbos day we had three very sweet seminary (post high school) girls at our table. It was great for the kids and for me. The girls happily set the table and helped put all of the salads and first course out before the guests arrived. The guests were fun to talk with and they were a huge help bringing out food from the kitchen and clearing the table as well.

The pickles and pickled carrots from earlier this week came out really well, and so did our 4.5lbs of turkey which was four turkey wings since we can't easily find whole turkeys here, our lemon meringue pie and our pumpkin pie - along with our regular Shabbos delicacies which friends so wonderfully send. I couldn't have done the extras, even with me daughter's help, if we were responsible for the brunt of the meals.

I did get a nap this afternoon, but I need some more pain medication and my bed soon none the less.

Another reason why I am happy I live here

I have heard stories about lousy customer service, but B"H what I keep on finding is people here care and go above and beyond.

I bought an arm chair last February and it has been trouble since soon after we got it. It is under warranty, but we had someone deliver it instead of waiting for the store to do so and I really think that the way he tied it onto the roof of his van something got bent, so I haven't fought too hard to get them to replace it.

In April they came out to fix it. There was on bent piece under the chair and they straightened it out. Then my kids had fun on it one Shabbos and it really got bent. If it wasn't bent to begin with I doubt it would have been a problem, but it was.

The day of my surgery a repair man came to the house (a neighbor let him in and stayed with him) and he tried to fix my chair, but it was impossible to get it 100%. He said he did the best he could and that it looked liked it wasn't a manufacturing problem, so they wouldn't be doing anything further.

Last night I got a phone call from the repair people. Three and a half weeks later, with no complaints from me, they decided that they wanted to try again and see if they could get it into better shape. He said he would be here between 8am-10am. At 7:30am he called to let me know he was on my street and would be here in a few minutes. It wasn't my ideal timing, needing to get the kids out, but I was just happy he called first.

For an hour he worked on the chair and it is much better. I am still not letting the kids near it, but it is no longer tilted, the leg rest opens and closes more easily and if you didn't know better you might think it was fine!

All this was without me calling, because they felt like they hadn't done a good enough job the first time.

Pickles!!

I was in pain today and spent the morning sleeping. I considering it a very small price to pay for the pleasant evening I had with the kids, one I will pay happily.

This evening I went to a lecture. It was local, I went by cab, and I figured I would just be sitting. Little did I realize that sitting with nothing to support my arm is really painful! My arm chair obviously has arms, but my dining room table does as well. By the forty five minute mark I was watching the time and trying to decide if I should leave. I tried everything, holding my arm with my other hand, leaning over and resting it in my lap, sitting up straighter, etc. I could not get comfortable.

I wasn't expecting that!

I came home ready to cry and walked into a mess of toys and blocks. You know, toys and blocks are a nice thing when there are kids there playing, but when the children are sound asleep and you are in too much pain to pick them up, they are upsetting, even if I don't want them to be.

I begged my husband to come down and help pick up. We have a repairman coming in the morning and I need things under control. Somehow he started cleaning the dining room table off and ended up in the kitchen. While in the kitchen he washed the cucumbers I had been begging for someone to wash. Hearing him dealing with my cucumbers I followed him into the kitchen.

We ended up filling my two pickling jars with pickling cucumbers and carrots...

But the living room is still a mess and somehow he is upstairs in bed now. After we finished in the kitchen he said good night and I told him to sleep well. I don't think that either of us remember the living room mess until I walked right back into the middle of it.

Too funny!!

I am Mommy.

I did it!! By 8:30pm, with no help and (almost) no tears, bathing was done, teeth were brushed, and everyone sung to sleep!! I think that is pretty awesome for three weeks post op.

B"H my girls cooperate really well. If they don't cooperate I don't sing and none of them want to miss that. The boy... he takes patience. B"H. Just getting him undressed can be a 30 minute production. It is by far easier just to do everything for him than let him help, but today was still physically a day I had to be patient and let him try and do what he can do. It was good for both of us.

I won't claim to have done anything besides bedtime today or not to be in pain and heading for the percoset now, but B"H the house is feeling more and more normal and the kids feel like they have Mommy back. That is the most important part.

It is so good to be Mommy.

Three weeks later, wanting life as normal.

I didn't take percost before bed last night, just tramadol and optalgin, since I had not had major pain yesterday. I don't understand how it works, if I am only needed tramadol during the day, I would think it would be fine at night, but no.

I woke up stiff and in pain. Moving my right arm wasn't a good option, and I am very very right handed. I muddled through the morning on just Tramadol but by one o'clock I realized my husband was leaving at five for work and I wasn't going to be okay doing bedtime on my own, so I finally caved.

I took the percoset and took a good 45 minute nap and woke up almost pain free. None of this makes sense to me. I guess I will take the percoset tonight before bed though, because I would rather sleep through side effects. It makes me jumpy, sensitive to noise, sleepy and nauseated.

On a much much better note, I did bedtime and even my son's bath tonight all on my own. Everyone went to sleep pretty much on time and happily. That is a first since my surgery three weeks ago! While I was singing my oldest did inform me that I am still a bit hoarse. These things take time!

I called my oncologist this morning. As I had feared my timing was terrible. Who knows what she was up to, but she requested I call her back after 1pm, which I did. When she is in a good mood she is fine to work with, on days like today, not so much so. Basically she said that I have no choice on the radioactive iodine and isolation but she will not book the isolation room without seeing me and she has no available appointments. December 27th it will be!!

After that I was done, I didn't call for my pathology report. Maybe tomorrow. Maybe not.

My dreams on pickle making are still dreams. The ingredients are in the fridge, but my pain was too much for it today. Maybe tomorrow.

I am striving to get my normal life back here. Little by little I am getting there. Baby steps.

Avoiding reality

It seems that I am avoiding reality, and my blog right now.

I didn't call my oncologist today.

I didn't call my surgeon to have fax me the pathology report either.

I spent the day ignoring thoughts of tumors, radiation and doctors.

This morning I slept.

This afternoon I showered and then I spent time researching museum memberships and which one is the best to join so that we can get into all of the museums we want to go to without breaking the bank if/when we come to the US. I got a groopbuy for a manicure and pedicure (34nis/~ $10 for 170nis/~$47 worth of services!).

I went out to my special needs mother's support group in the evening and pretended that all was well. I had ice cream and a bagel and enjoyed myself with no cancer thoughts.

So tomorrow I have to make the calls. Tomorrow I need to face reality.

I don't want to.

I didn't disappear

I just keep on falling asleep before I can update!

My day of appointments Wednesday was B"H fine though exhausting and left me in a lot of pain. It seems that everyone (except me) is in agreement that we need to go ahead with the radio active iodine treatment and isolation from my family again. I mean, I agree to do it since they say I must but I don't want to and knowing what I am going into makes me even more anxious about it.

The room was airless, smelled bad and had no curtain. The huge (sealed) window faced right into a busy glass hallway to the ER. They kept on bringing my pajamas that didn't fit (which with no curtain was just not fun). My face swelled up like a chipmunk because my salivary glands were upset and continued to do so off and on for over a year after the treatment. It was painful, and considering the fact that my brother had salivary gland cancer last year, more than a bit scary as well. The RAI increases my risk of salivary gland cancer. It increases my risk of breast cancer, colon cancer (which took my father's life) and other cancers as well.

It took months for my blood counts to come back to normal and for my to stop being nauseated and even more exhausted that I normal am after the last RAI treatment. I had to be off of my thyroid medication for weeks before and was hypothyroid for quite a while after. It took almost two months for my thyroid medication to kick back in.

All of that is on top of being away from my family for 8-10days because I am dangerous to them. I need to find a place to stay after the four days inpatient when I am most radioactive before I can go home. Somewhere where I have my own bathroom and will not be in contact with children or pregnant women.

And it doesn't generally do much for nodes in the neck, so if there are any more cancerous nodes, which no one can say there aren't, it won't even get rid of the cancer.

I need to call my oncologist and get an isolation date but I am having trouble making the call. I keep on thinking I will do it at a different time of day when it might be more convenient for her, but really, how can I know? Either she will answer or not. Either she will take care of it when I call, tell me to call back later or ask me to come in. Waiting to call doesn't make a lot of sense.

Sunday. IY"H Sunday I will press the call button and stop over thinking and avoiding this, whether I want to or not.

B"H today was much better

My pain was much more manageable. We have out main meal for lunch, which I didn't make, but I did manage to bake potatoes for supper. I also had a lot of fun putting my son's food tomorrow for while he is at school. Getting back to being mommy is great!

Tomorrow I have a busy day. I am a bit nervous that the pain will be back full force but hoping it won't. I have to go for blood tests in the morning and have rescheduled my hair cut (which was to have been the day of my surgery before my surgery was rescheduled) for right after that. In the evening my son has a doctor's appointment and I have my endocrinologist's appointment. My husband is working day shift, from 8-4pm so I will be on my own to deal with lunch and homework. For me, that is a very very full day.

It will be very exciting if I get through it without major pain or fatigue. Considering the fact that I needed two naps today, and I didn't go anywhere, I am a bit concerned, but I am still hopeful.

If I manage tomorrow in one piece it may be time to ask my husband to buy cucumbers and get back to pickling.

It doesn't look that bad!!

I saw my surgeon today. He took off the steri strips, which seemed to have no intention of falling off. I won't say it was pleasant, but he was B"H pretty quick. I was really worried about the stitch pulling, but it was no big deal at all! He had it out before I could even flinch. The steri strips were definitely more painful.

My scar doesn't look bad at all. He cut on my old scar and it is healing up nicely. I think it looks as good now, two weeks post op, as it did six months post op last time. It isn't terribly noticeable at all, just a bit pink.

The computers were down, so he couldn't even get in to see the pathology report, so during my appointment my surgeon ran down to pathology to speak with them again. The final report still isn't in, so I wouldn't have had it in hand when I left anyway. He was hopeful that we would have it by the end of the week.

I see the endocrinologist on Wednesday evening and I hope to have the report by then.

I bought the kids a cool toy to put away for our trip. It is a brightly colored board covered in a viscous black solution with a thick plastic cover over it. You can use a tool or a finger to move the black aside and make pictures and then use the took or pat the liquid back into place and start again. It is a great mess free travel toy and it didn't cost very much either.

Great news!!

My appointment isn't until tomorrow, but I spoke with my surgeon today. The first thing he had to say was "We got it!! We got it!!" B"H the tumor is out! The cancer was found, the pathology report shows it. Gone out and bye bye!!

Tomorrow I see my surgeon, so I will get a copy of the report and get to talk to him more but that was a good way to start my day.

I am easing back into the mommy business. Ready or not, the responsibilities come! Today DH was working evening so I was the only one home to deal with a four year old covered in excrement. He had a diaper on, but it leaked. TMI I know, but the short of it is, I had to undress him and bath him and dress him again, despite my pain.

B"H After that I got someone to come and help with bedtime so I could take some strong pain medication and not the the adult in charge, but I did it. I managed.

Tomorrow I will be two weeks post op and life goes on and I am living it.

We continue to dream about our trip to the US. I have a friend who managed to find cheap tickets, though I can't buy them until I have money, it was nice to hear that they exist. I have been looking at car rental prices. Thankfully the first price I found was through the roof high so the other ridiculous prices I saw for a car that can hold a family of six for a months seemed almost reasonable in comparison. Any which way, until we have money and plane tickets there isn't much else I can do but look. Looking is fun, especially under the influence of pain medication.

This is my 300th post.

I am going to use this post to thank my husband and children for loving me, caring for me and keeping the house from falling down.

I am going to thank God for getting me through this alive and able to smile.

I am grateful to my surgeon who knows Who is guiding his hands, my community for their support, food and prayers, my painkillers for allowing me to be here with my kids during the day and sleep at night, my comfortable chair for giving me a place to sit without any pressure points and numbness, my cleaning lady for washing my floors and bathrooms, and my chessed helpers (volunteer high school girls) for doing homework with my kids, taking them to the park and washing my dishes.

I find it amazing that we are almost two weeks out from surgery and my children are happy and my house fairly presentable.

Monday I see my surgeon and hopefully get the pathology report. I am praying hard that the cancerous nodes show up so we can know without a doubt that they are out of my neck. Once I hear that it will be time to celebrate some more.

Showering, dreaming and living!!

On my grand accomplishement list today, I had my first full, head to toe shower and survived! I was not officially allowed to get my incision wet until tomorrow, but erev Shabbos is no time to try such a stunt out, especially since I am going to be the only one at home. It was just safer to try this stunt when my husband was here to save me if I needed him to. B"H I didn't!!

Showering tomorrow would have guaranteed nothing else got done tomorrow. Not only is showering exhausting because pain is exhausting, I knew that the pain of the shower was going to require major medicating which I can't do unless I am prepared to go to sleep. Since my husband is working, that won't be an option.

I hope that made at least a little bit of sense. My head isn't on straight any more.

Besides my lovely shower, I also managed to make appointments at the US consulate to get new passports for my girls. I checked and my husband, son and I have a couple years left on our passports, but my girls are all already expired. I figured the next step in dreaming about a trip is making sure we have our passports in order.

Once we have our US passports taken care of we can move onto getting everyone Israeli passports for the first time! That will be fun and exciting.

Having a dream to discuss and research is a great distraction from the pain and keeping me from getting bored. So far we have figured out that if we leave Israel for more than 30 days we will have a mess with our disability benefits here. They will probably be stopped and we will have to do paperwork to get them reinstated. I was hoping to stay in the US for 4-6 weeks, and that fact made four weeks sound like about the limit.

Okay, my head is really spinning and I am not sure I am making sense or if I even started the conversation I am continueing yesterday, so I am going to try to go to sleep.

The point of the post was, it was a good day. B"H. I am still in pain, but life goes on and I am still here!

Sore.

I survived another day B"H. There were more problems with help and it was all a bit frustrating, but in the end we got through it. Me in a bit more pain, the kids with not quite the bedtime that they are used to me providing, but happy.

Someone came to visit and help this afternoon, but she was decidedly unhelpful. She wanted my attention, which I don't have, wanted to talk, which hurts me, and kept on asking for help with things, which wasn't possible. I asked her to make mashed potatoes because one of my kids loves them and was willing to help peel and the potatoes are sprouting, but she wasn't excited about the idea. My daughter started peeling and the peeled potatoes are on the counter waiting still. Cookies she decided to make, but it is a hard baking in someone else's kitchen and the kids were in her way. It ended up being a bit of a comedy and relief came B"H in the form of our homework helper who came to all of our rescue. She managed to get the bowl off the mixer, the oven on and me off the hook for the project.

The high school girl who I thought was coming didn't show up. I didn't call to confirm that she was coming and I guess I should have. My husband had stripped my son's bed (it was wet) so not only did I have to do all of bedtime on my own, I had to make his bed as well. Ouch.

Putting a wiggly little boy to bed is a very physical activity and I was snappy with him because I was in pain and I really feel bad about that. It wasn't his fault. He wasn't being and more wiggly and squirmy than usual. It just hurt me which he can't understand.

It is many hours later and the pain medication still aren't helping. I am so glad my husband is working tomorrow evening and should be home to help in the evening.

On a very very good note, a good part of the feeling in my arm, between my elbow and shoulder, has come back. I haven't had any feeling from my shoulder to down halfway to my elbow since my last surgery, in April of 2009. B"H cleaning out the scar tissue seems to have helped that. I have feeling now most of my arm, though still not my shoulder itself. I was not expecting that to return. This is incredible!!

Not having feeling wasn't effecting my life all that much, but having it is really nice. I still have quite a lot of numbness other places, but every bit of normal is appreciated.

I had a hard day,but my children were wonderful B"H

I was not okay pain wise today. I didn't get out of bed until my husband had to leave for work at almost 3pm because it hurt too much to move and my head was too foggy.

Getting downstairs and seeing my kids made me feel better, but didn't get rid of the pain. Pain is so exhausting!! The kids were wonderful though. The helper we had arranged for this afternoon called as my husband was leaving to say she couldn't come today and I was really worried, but it was fine. One of my older children brought the younger two to the park. When they came home they played very very nicely and quietly, barely making a mess. They were here, they were happy and it was nice to have them playing at my feet.

This evening one of my friend's high school age daughter's came over and put the kids to bed. I did end up brushing my son's teeth, because he wanted only me, and singing to them all, but I didn't have two bring anyone upstairs, change my son into pajamas, wash his bottle, prepare his formula or diaper him. It was a huge help.

After the kids were in bed she spent another half an hour here straightening up the kitchen, washing dishes, clearing off the table, etc. The normal daily maintenance things I generally would do, but I can't.

I really appreciate the hour she spent here. I think the kids might have had to run a muck and made their own bedtime or gone to sleep because I cried at them that I couldn't do it if I hadn't had help. Neither of those options are okay. This one was felt okay. They went to sleep happy. My helper did the physical work, I did the kissing and singing and it was a good balance. I can't say that I didn't overdo doing what I did. It definitely caused some pain, bending to give kisses (though I tried to squat down at opposed to bending over) and singing as well, but I need their lives to feel normal. That is my goal as a mommy.

Tomorrow my husband is also working evenings. I hope I am feeling better, but I do have someone (reliable) who is supposed to come from 4:30-6:30pm and the my bedtime helper said she would come back as well, from 7:30-8:30pm. IY"H it will all be okay. The rest of the week my husband is working mornings and should be home by 4 or 5pm, so bedtime won't be such an issue.

I am rambling, exhausted and need to take my meds and go to sleep. The point is, it all works out. B"H I am well taken care of and my children know they are loved.

Not much to post

I am still in pain. Still not doing much. I am here, kissing and loving my kids, either from my chair or from my bed. It feels good to be here to love them, but I hate being out of commission. I can't even wipe off the counter or pack lunches.

It has only been a week since the surgery, but it feels like forever and tomorrow DH goes back to work. We have volunteers coming for part of the afternoon and someone who is willing to come for bedtime, but how can I be here and let someone else do bedtime? It is one thing when it is my husband, but a babysitter or friend putting my kids to bed while I sit in my recliner or lie in my bed?

I don't remember resting being this hard last time, but then again I was in the hospital a lot longer post op last time. I assume it is like the hardest part of childbirth, we erase it from our memories so we can continue with life.

As upbeat and smiley as I am in real life and as much as I can laugh my way through most situations, this is really hard on the inside. I have kids I want to pickup and cuddle. cucumbers waiting to be pickled, lunches to make and with not DH home tomorrow evening, bedtime, feeding pump and medications back on my head.

I don't want to be a patient, and I am not being very patient about it. I want to be okay and I want to be mommy and I want everything to be fine.

B"H for wonderful children. They are running to do anything I ask. They have been giving me careful cuddles and kisses and they are trying to listen without making me yell. Yet they aren't acting worried, which would be upsetting to me. They are inviting friends over, going out to play and "forgetting" that they have homework until I ask.

My house is not out of control, it isn't messy enough to make me nuts (though there are clean dishes on the kitchen counter I am itching to put away), DH has kept up with the laundry and even unpacked my suitcase for me. There is so so much going just fine, and I totally appreciate it. DH is doing little things for me that he would never think of on his own and which wouldn't bother him, but he does them happily when I ask.

Unprompted, today he made a trip to the grocery to try to find me soft but tempting foods. He is a great guy and he really cares.

Woozy wish washy ouch

My head does not appreciate percoset when I take it. My body doesn't appreciate the pain if I don't take the percoset. My doctor had no other medication options, just ignore being woozy and take the percoset!!

This evening my special needs support group friends came over. It was nice. I said I wouldn't clean up or do anything and didn't do much. My husband cleared off the table, my girls cleaned their school things up and took their books off of the couch. The little bit I did, putting out food and drinks, has me in real pain now though.

30 minutes until I can take more medication and go to sleep.

I need to realize I can only sit and watch. Just sit and watch. Only.

B"H I am home!

It is great, but the trip was exciting and just the energy to look up at the appropriate time, respond to their questions and be here is huge. There were some issues at our local pharmacy with my pain meds as well.

Percost they had, but the Ultram they only had the extended release (once a day) instead of the every eight hour one, so I don't see how I can alternate them. If I take the Ultram ER can I take the Percost later or not? There is no one to ask at this point. B"H I have a couple regular Ultram left that I didn't take after my last surgery, so I will use those for now and hopefully get better answers Sunday.

My husband did a great job getting me upacked and settled in before the kids got home from school. Now I am ensconced in my chair, working on looking like I am listening and keeping my eyes open. I am not loud enough for people to hear me over the other noises in the house unless they are near. It is a bit frustrating, but yelling to someone in the next room or talking over the kids talking just isn't happening yet.

It seems that there was a blip with my disability application as well. I got home to a message that there was a decision but they can't tell me what it was since it was sent for a special review which can take up to a 60 days... so there will be no answers until then. I would love the piece of mind of knowing I could pay my mother back in a timely fashion. I hate owing money, especially when I am not sure if/when/how I can repay them. Relying on Social Security to pay her back, when it is far from guaranteed, though it should be, is definitely nerve wracking.

Speaking of nerve wracking, the percoset makes me jumpy. I will be very happy to be off of it. Noises make me jump and my heart pound. It was hard in the hospital, but ridiculous now that I am home. :)

Drain out, pain not, IY"H home tomorrow

My drain was draining too much to come out this morning but B"H the drainage slowed down so my surgeon pulled it before he left tonight. That means that tomorrow IY"H I can go home. They aren't doing anything for me here that we can't do at home. I blew through so many IVs that the current plan is to change everything over to oral medication, even my antibiotics, so it is time to go home and get some real rest.

The hospital is a funny place. People seem to think that you can rest in the hospital. Reality is not the same. There are five beds in my room and some of them are filled with people in pain and some are filled with drama queens.

One lady vomited and made a scene, demanded oxygen and said she couldn't breathe because the taste of the salt water they gave her to rinse her mouth was so bad... She was so dramatic, and that was before surgery. I really wonder and am nervous about how she is going to be tonight.

My pain is up more from the drain being pulled and my neck swelling now. The drain was uncomfortable but it was doing its job. The percoset is helping, but it is also making me feel gross. It makes me woozy and tired and I want to find an alternative that still helps the pain. At least if I could get some solid sleep I might not notice the pain as much. It is easier to deal with things when you are well rested.

All in all, we can do this at home where it is quieter, I can rest more and I can cuddle my children. My only fear is the ride home, it is a really twisty road, but at the end of the drive I will be home where I belong.

Ouch

I was in a lot of pain today and it just wasn't making sense. Two days post op I didn't expect the pain to be worse than the day before. Swallowing hurts, talking hurts, my mouth/throat was hurting more than my incision! Of course telling this to my doctor meant him scoping me, which I hate. I am not a fan of things up my nose or down my throat.

Doing so showed him the problem though. The ET (breathing) tube that they had in my throat during my surgery caused blisters in my soft palate and throat. My percoset dose was increased, but I am not happy taking even the lower dose (it makes the world feel a bit spinny and yucky) so I am certainly not taking the higher dose unless I am unable to sleep at night without it.

My drain seems to be draining a lot less than it did yesterday. They don't empty it until 6am, but I am really curious to see if it will be under the 20ccs and I will be out here tomorrow (though how I would survive the trip home I really wonder?) or not.

Today I had a bunch of wonderful visitors. All of them understood they couldn't stay long, so it was nice. The morning visits were a bit easier than the evening ones but they were all nice and appreciated. It is funny, people are traveling for so much longer than they are staying for. I feel bad about that, but I am just not up for long visits.

My husband brought my kids, which was wonderful. He came by cab and arranged to stay only half an hour (including getting to and from my room) because he knows that my energy is zapped in 20 minutes or less and that is also about how much time my son can handle the visit before starting to look for trouble. As predicted, he found a nurse call button to press just as we said it was time to go.

I B"H got my hugs, to see my sweet children and a bit of cuddling. They got to see that I am B"H okay, here, smiling and walking around. It was an important, though brief, visit. The hospital clown had given me a sheet of puns/jokes, that I got to share with my older children and the daughter of one of my friends had left a puzzle here which I played with with my youngest.

Once they left I took pain meds and rested. I felt like a wet dishrag but a happy wet dishrag.

And that is where I am, desperately hoping to get home and worried about how I would get there, it isn't going to be an easy trip physically. The road between the hospital and home is twisty. I also wonder how I will manage when I get home and don't have a bed right there so I can lie down as soon as I feel the need. I go from fine to faint and dizzy with no warning.

So we shall see. The drain decides the discharge and it could go either way. If I am able to go home I will be excited and it will work out. If I have to stay I can see that that might be for the best for another day as well. Only time can tell!

Here I am!!

Surgery is done, though we wait for pathology to see if the mass was even found. My neck was such a huge mess of scar tissue that my surgeon's job was a nightmare. He had the radiologist in there doing ultrasounds to help guide him and sent frozen slides during the operation to pathology. Pathology didn't see the cancer cells on the slides, but my surgeon says that that doesn't mean he left the mass in, that often the slides miss things that will be apparent on the final pathology when they slice through and analyze everything.

All in all, surgery took four hours. The scar is much smaller than my previous scar B"H. I am breathing and talking, though in a considerable amount of pain and hoarse. Percoset is helping the pain, but not getting rid of it entirely. I have one drain and will be here until it is draining less than 20ccs a day and can be removed. We hope that that is before Shabbos, but only time will tell. After my last surgery it took a week and a half to get the drains out... I think they were draining more in the beginning though.

I am definitely doing better than after last surgery. Pain control is B"H better. I am ambulatory and have been to the bathroom on my own. I have use of my arm. This surgery was also major surgery, but compared to my last surgery it was so much less invasive that I am just relieved to be doing better than I feared I would be. Getting in and out of bed is definitely painful, but it is possible. I have been able to dress myself and keep track of what medications I am getting and when.

So I am here, B"H, on the other side of the surgery. The recovery will take time and we still have to pray that the mass is out, or this was all for naught, which is a scary thought.

Surgery IY"H tomorrow, Monday

In an hour I should be leaving for the hospital for pre-op testing. My surgeon called at 5:15pm and told me surgery was on for tomorrow, instead of November 24th, and I need to be there at 9:30pm tonight for admission and pre-op labs.

I have too many things to arrange and too much to do to be nervous. My husband is schedule to work and needs to get the time off and we have to arrange for babysitters for the week.

I may or may not be updating the rest of the week. Most likely I will squeeze in another update in the morning, from the hospital, but it depends on how early they take me back.

It is a tricky surgery for the surgeon since the mass is in a dangerous place and there is a lot of scar tissue there already, but the recovery IY"H should be much easier than last time. I don't expect to be in the hospital for more than three days, but only time will tell.

Please daven (pray) for an easy surgery, full excision of all of the cancerous cells and a speedy recovery for Chaya Liba bas (daughter of) Sorah.

Thank you

Dreams

I have been having very vivid dreams lately, both good and bad. They are stemming from my recent experiences with life and death and wake me up either shaking or wishing they were real.

I don't remember ever having such vivid dreams or remembering so many dreams in the past. I had a dream about my friend RivkA, who just passed, followed by a dream about trying to decide which organizations to donate money (which I don't even have to donate) to, followed by a dream about traveling and vacation and making memories.

It was a lot for one night!

Shabbos night we got our first real rain for since last March. I hope we get a lot more since we are well overdue!!

This afternoon we had guests over, one of whom commented on the fact that I live my life in my recliner... As much as I do spend a lot of time there, since it is the only comfortable place for me to sit (everywhere else gives me pins and needles running down my legs from pressure points) I do keep my house clean, and running well, which I leave my chair to do. I get it was a joke. I know she respects me and appreciates the orderliness of my home and my well behaved children, it was said while I was sitting in my dining room table at my dining room table with them, but it still stung a bit.

Not being able to do isn't a choice, and I do what I can. I don't have all that much help, considering how I feel. B"H I have someone who comes for an hour on Sunday and helps with dishes and occasionally has time left over to help the kids clean the attic playroom. I have a cleaning lady once a week for three hours to do the floors and the bathrooms. It is a huge help, and if I was healthy it would be a luxury. At this point it is not. It is not enough of one for me to stay in my chair, relax and not work myself to the point of feeling lousy and needing IV calcium on a regular basis.

I know I am being overly sensitive. I smiled and didn't react to the comment, but it still stings even though I probably shouldn't have let it. I didn't choose this. I don't want this. I liked being healthy and super mommy, making everything from scratch and taking care of everyone.

Maybe tonight I will dream about being super mommy again. Too bad dreaming won't make it reality in the morning.

What a sad day.

My friend RivkA bas Teirtzel, will be missed. Before I left for Kever Rochel this morning I checked in and heard that her pain was under better control. By the time I came home she had already passed.

Baruch Dayan Emes (blessed is the true Judge).

She fought a long and valiant fight with breast cancer. She is the mother of three school aged children and her whole family needs your prayers.

http://coffeeandchemo.blogspot.com/

I lost my father to colon cancer when I was 16. Even 19 years later the thought of what that family is going through if fresh and raw.

We have all lost out by not having RivkA in this world, but I find comfort knowing she is out of pain and in a better place. The real hardship now is for the family she left behind. They have to continue living and that is not going to be easy.

I am so happy!

Since I applied for disability in December 2009 I had heard nothing and could get through to no one until very recently. Two weeks ago I got a phone call from the consulate asking me to bring them medical records.

I went Monday and it was a disaster at the consulate. They called me and asked me to bring in documents, then they didn't take all of my medical documents. I didn't have the strength to argue with them that they needed them all nor to go back once I realized what a disaster it was that they didn't take them.

I finally found an international Social Security number (after months of tries) that seems to have someone who listens to the messages and returns calls. Occasionally a real person answers!! I have been leaving message on a different number with no return calls and no one ever answering for months now. They answered the phone today and returned my call from yesterday! Five minutes after I got off with one Social Security worker I got a phone call from an even more helpful Social Security person!

The person who called me back was able to transfer me to my claim rep who gave me his fax and phone numbers. He told me that it wasn't my job to gather records, the Consulate was supposed to have gathered them on their own and that even though I gave them my documents on Monday, they still hadn't been faxed to him.

I faxed him all of the records and within half an hour he called to tell me he got them. He also said that there was enough documentation without even translating any of the Hebrew documents and he is passing it onto the doctors. He thought he would have the approval back from the doctors in three days and he would be in touch. It seems unlikely, and I am not holding my breath, but I am cautiously optimistic that we will have an answer before my surgery.

My surgery is in four weeks and I have to pay almost $4k of it out of pocket up front, so it would be fantastic if I got approved before then. I can't believe I am even letting myself dream about that. I will most likely have to borrow it from family (thank God they are there for me) but at least I have hope that approval may be on the horizon.

Tomorrow I am IY"H going to Kever Rochel with my mother in law. I have a lot of people in need of healing to pray for and I may sneak in a prayer for my financial situation as well. It certainly can't hurt.

I did it all.

I took a nice long nap this morning, stayed home to greet the first of my daughters when they arrived home (one had an after school beading group this afternoon), and then took a bus to the Beit Natan Women's health expose. I felt the need to show my support and I wanted to see my friends. I also had a little bit of worry that it would be empty and they might need a warm body.

B"H it was not empty. It was packed. There were thousands of women there. For a bit I helped give out bags with coupons and a magazines to the ladies who had paid to come in, since my friend manning the table was swamped. It was wonderful to see so many of my ladies and to be able to help out a bit.

I purchased a couple things that I needed from the vendors, caught up with friends, entered the raffle and went to the laughter workshop. It was exhausting but good.

After I got home I got a phone call from one of my friends, who stayed until the end, that she thinks I won the raffle I had really wanted. It was a silver and wood challah board, challah knife and challah serving tray. I hope she heard right, it was really really noisy there and I didn't get a call from Beit Natan telling me I won... We shall see!! It would be so much fun to have won.

After an hour of sitting and trying to gather my strength I went with my mother in law to my neighbor's house. She was hosting a party for her birthday and the yertzeit (anniversary of death) of the Rebbe Rashab - the fifth Rebbe (grand rabbi) of Lubavitch.

I was a bit too tired to participate fully, but she served some really yummy soup and I was able to socialize a bit. It was a long long day.

Now I am sitting here, trying to gather energy to pack my son's food for tomorrow and prepare his clothing. My head hurts and my body aches, but B"H it was a great and very busy day. It is okay to be wiped out after a day like that!