Great news, stable TSH so far!!

My tsh hasn't changed even though I started a new thyroid medication for a portion of my medication (I am still mostly taking the old medication) three weeks ago. I am happy. I hope that it continued to work out so well.

My calcium is up from the critical lows when I was on vacation, but it is still running quite low. It feels like it is taking a long time, even with IV, to recover. It was worth it, but it was definitely a lot for my body.

I had a suspicious mole removed yesterday. It was a bigger deal then my mole removals in the past. The stitches are in for the next two weeks, so it is the end of my pool days and there will be no beach for me this summer. I have never had stitches for a mole removal before, so it was a surprise. I wonder if I would have put it off until after vacation if I had known. It is better that it is gone though.

Now I wait the next three weeks for results, knowing full well that the doctor will likely have them within a week. That really frustrates me. I have a family history of skin cancer and some precancerous moles removed in the past and this one didn't look good, so it would be nice to hear that it was fine. The good thing is, either way I did what I had to do.

My other consolation is a local pool opened! Even if I miss swimming in our pool this summer I am hopeful that I will get the chance to swim again soon.

Welcome back to real life!

We are home, the trip was great and slowly but surely we are getting the house back in order and everyone settled back in.

I had huge issues with my calcium when I was gone and only successfully got IV calcium once, my veins were horrible for all who tried in the states. I had many bruises to show for it, but after that first IV all that they managed was IV calcium under my skin and into joint spaces, not veins. It was frustrating for all, and I felt really bad for the people who were trying out of the kindness of their hearts!

My calcium was down to 7.3 and I was a numb, tingly, twitchy mess. B"H for lots of great distraction and some comfortable chairs here and there.

I got home, got calcium IV, stopped running around and doing as well, and have been feeling quite a bit better B"H.

The pool is up now, which is wonderful. It is being enjoyed as much this summer as last.

I started the new thyroid medicine for a portion of my medication the week before we left the states three weeks ago. I still have 100s of the old, but my 50s are of the new stock. I did blood tests today so I should know in the next couple days if my TSH is already going up from the new medication. It will be a mess of medication adjustments if it is, so I really hope not. Soon enough I will be out of the old 100s and switching to just the new medication because of lack of choice. Very very frustrating!

Besides that we are enjoying summer, savoring the memories from our vacation and starting to plan and save for our next trip, hopefully in another 2-3 years. Six years without seeing family was much too long.

Getting ready to go

We planned our trip to the US for six months and now it is in six days.

All of the IV supplies are packed and most of the medication and my son's medical supplies are packed as well. We have medical clearance to fly, and oxygen on the plane for my son. We have letters for security for both of us. I have boxes upon boxes of stuff waiting for us at my inlaws. Just off of the top of my head I know there are suitcases, clothing, formula, a feeding pump, feeding pump supplies, pool filters, baking sheets, toiletries, diapers, wipes, car seats, and laundry detergent. We are going as empty handed as we can, since we are going to be pushing our suitcase limits, both in terms of quantity of suitcases and weight limit, coming home.

It isn't that people are generally lacking anything here in Israel. I mean, except for my son's nonstandard medical supplies and diapers we could get most everything here. Right now the dollar is so weak though that things are relatively expensive in Israel if you are spending US dollars and plus, I really appreciate online shopping. :) I can shop without walking store isles and making myself sick, find bargains (6 pool filters for $24 on Amazon with free shipping, instead of 100nis (~$28.50) for one filter here) without running from store to store and shopping in English is a bonus as well. I can type or talk without thinking about how to say what ever it is that I want to say first. B"H my Hebrew is good enough that I can do most of the business I need to, but it requires a lot more though than English.

I love it here, I am glad we live here, it is great for the kids and we are all happy that we made the move, but it isn't the easiest place for me to shop. That is generally a very good thing, my wallet certainly appreciates it.

Besides that I am a bit worried that I packed out itinerary too full. I tried not to plan two days of trips in a row, but there aren't enough days in the month and there are so many people we love and want to see.

Entertainment for the kids (lots of coloring and arts supplies and a bunch of magazines as well) are packed. The freezer is full of cookies that my six year old helped me bake. She has turned out to be a much more persistent cookie shaper than my oldest two ever were. I made the dough and she made five dozen cookies one afternoon. She stops when we are out of cookie sheets or out of dough. I think we might be sharing cookies with everyone on the plane if she continues her cookie making at this rate.

We have two hotel rooms booked for our night in England and kosher food being delivered to us there. The rental car in Boston is confirmed. We have our cell phone for the US and it is in with our trip papers. Before we leave I can actually forward the calls to our US phone number, which generally rings in our home, to ring on our cell phone.

Come to think of it, one of our carry on suitcases is still with a friend on the other side of the city. I lent it to her and need to get it back. I have to remember to ask her about it tomorrow.

I am trying not to stress, just plan ahead and avoid the last minute rush, but I am quite certain there will be a last minute rush none the less. The kids are using their backpacks which they are putting their stuff into for the plane, until the day we leave. Everyone is wearing their clothing still, so besides undergarments, tights which I bought new, and some shirts, I can't pack much clothing yet. After Shabbos I would normally be washing and packing everyone's Shabbos clothing. My nephew's wedding is here on Monday evening though, so I won't be packing them, just washing them to be worn again and washed again before we go.

We are working on emptying the fridge so we can turn it off (with the door propped open to prevent mold) before we go. We need to eat until we leave, but finishing all of the perishables has been a fun challenge. I made cheese cake tonight for no better reason than a bunch of dairy products that I wanted used up. I hope the kids enjoy it, since my waist certainly won't.

Six days to go, and there is so much to do, but so little left that I can do before the last minute. Everyone is so excited though, so even if there is a last minute rush I am sure we will get there and it will all be well worth it.

I am sick, but getting better B"H

I thought it was allergies but work up the next morning with fever, so I guess I was wrong! I am still sick but every day is B"H a bit better than the day before. My fever is finally down, but I am still achy and can't smell or taste anything. Even chocolate just tastes sweet, not chocolaty. It is really odd.

Last night I made pumpkin muffins (proof that I am doing better!) and the kids love them, but I can't taste them at all. I stuck one in the freezer so I can eat and enjoy it when I can taste again. :)

My calcium crashed a bit from the fever, but B"H I was able to recover it with oral medication.

I refilled my thyroid medication and it seems they have switched manufacturers. It is the same address, but a different name and the bottles and pills look a bit different. I am not happy at all. Being sick and finding this out at the same time was a bit overwhelming. One of my most important ant-cancer drugs is my thyroid medication and if this new supply is cheaper, as it appears (the letters on the pills aren't as clear and they just don't look proper) it could cause real trouble.

I am going to have as my doctor to start following my thyroid levels with more regular blood tests again. I am really uncomfortable with this change.

We are leaving for the states in 4.5 weeks IY"H. The countdown is on! I am glad I had a head start since I have gotten nothing done on my planning list once I got sick.

:) Still here, still busy

Today I made it over to a friend's house to say goodbye to her before she left on a trip to the states and then to the mall where I miraculously managed to bring home two pizzas (I had coupons) and two new rolling suitcases (and my pocketbook and an ice coffee) by bus. I am a little sore from the effort, but B"H no worse for the wear.

It is the first time I left the house since last Wednesday. I really prefer staying home, but getting the errands off my head and behind me is a huge relief.

We now have carry on bags for everyone big enough to be responsible for one.

I started in earnest on packing lists today. My goal is to keep what we are bringing to a minimum without forgetting anything essential.

And allergies have hit my full force. It seems our pine trees are in bloom. My front yard is green from the pollen and I just can't stop sneezing and inside my ears and mouth are itchy.

I had several years here without major seasonal allergies, but I guess we have been here long enough to acclimate (and sensitize) myself. :) I am working on convincing myself that that is a good thing!

All in all, life is B"H good, a bit on the boring side but we really appreciate that around here!

I passed!! I did it!!

One try for the written test, a bunch of lessons and now I just passed my practical driving test!

Tomorrow I have to go down and pay some more money and pick up my temporary license.

I am incredibly exhausted, but so relieved. You would think that after 14 years of driving it would have been a given that I was going to pass, but I was nervous none the less.

After my test, before the results, a good friend took me out to a bagel place for lunch. I was a bit too wired to be hungry, but I enjoyed a blueberry muffin and a really rich and yummy thick hot chocolate drink. It was a lot like hot chocolate pudding in a glass with a spoon, totally decadent and hit the spot.

I am totally exhausted, but it was a very good day.

Drivers license test tomorrow!

I have had my license since I was almost 17, but now at 35 I am facing my second license test. The failure rate here is 50%, so I am a tad bit nervous, but IY"H it will be just fine. 50% isn't less than 1% and I know how to beat those odds (whether I want to or not!) so hopefully I can beat these too.

My other goods news, I bought and tried melatonin and I love it. I am finally sleeping at night and though I am still exhausted during the day, at least I am sleeping at night. Not spending hours at night laying in bed with my mind racing, unable to fall asleep, is a huge blessing.

I am not sure when my list making will happen now, but my stress level is certainly lower!

This shouldn't be so hard.

A vacation should not include wondering if IV saline can be putting into checked luggage without bursting or coordinating doctors and nurses to order labs and be ready to give IV medication.

The hard part should be the itinerary, which museums to go to, and the rental car.

I wish we could take a vacation from everything medical. From my stuff, from my sons medical stuff, from it all.

I really want to go, but there are so many things to coordinate, and then I start sounding obsessed or worried when I just feel busy. An IV dependent woman traveling with a tube fed child with supplemental oxygen needs is a train wreck unless everything is coordinated and planned out.

We need plug adapters to charge things on our layover and when we get to our destination, oxygen on the plane, medical clearance to fly, letters for the security people, IV supplies, tube feeding supplies, spare feeding tube, portable oxygen concentrator and paraphernalia, pulse oximeter, tape, formula, meds for a month for everyone, plus all of the normal things.

I guess I am obsessed. My brain is pretty stuck. This is my second post on the same topic.

But I think considering out situation, my need to plan is pretty normal. I think that my work planning and figuring it all out is the only reason that we can make the trip, and the reason we may be able to get through it smoothly and enjoy it.

We have just over six weeks until we go, and I can see that things are working out and falling into place. I have also started shopping. We got my son the cutest suitcase for his birthday. It is a ride on toy and a suitcase all wrapped up in one. http://www.amazon.com/Trunki-Ruby-Red/dp/B004AVQ22U/ref=sr_1_17?ie=UTF8&qid=1305498220&sr=8-17 - there is a cute video on this listing (we got it cheaper but where we got it there is no video). His birthday is right after we get to the states, so the timing was good.

We also started gathering our suitcases, dusting them off after years of storage in the eaves, and figuring out what we have and what we need.

That part has actually been fun.

I am sorry

I actually had a couple people contact me about my lack of updates. I am here. I am okay. I am just busy, tired and boring.

Most of what is going on in my head is mostly unrelated to me and health. I am busy trying to plan and figure out the logistics for our trip to the US this summer. I had to figure out oxygen and get medical clearance for my son for the flight, have been figuring out luggage, carry on suitcases, itinerary, packing lists, fun and entertainment for the children on the plane and we aren't leaving for more than a month. I have to get everyones medications refilled, get any medications we might potentially need when we are gone, travel insurance, my IV fluids and meds, and pack still.

It is a lot. And I haven't been sleeping much or well. My brain doesn't turn off, so I lay down and think of things to remember, do or buy instead of sleeping.

Last night, for the first time in a long while, I slept. I finally got myself some melatonin and I am loving it.

My calcium has been up and down, but I have a friend and a sister in law who are both RNs and both willing to start IVs for me if I need. Thank God for them! I have a doctor willing to order labs, and the lab quoted me ~$70 for my most basic tests, though I know from previous experience that they will charge for the blood draw as well and add on more fees, at least the starting cost isn't too crazy.

I need to schedule a neck ultrasound before I go.

Next week I have driving test and hopefully get my license.

Things are busy, or at least my brain is, with pleasant things even if getting there isn't all that easy.

I am here, just overwhelmed

Cleaning for Passover, dealing with sick boy (who thank God is doing much better) and balancing my health has been a lot.

The holiday is here, the kids are all home, DH is working when ever he can and I am really numb. Tomorrow the hope is, getting IV calcium, going to the zoo and making ice cream. I would skip the zoo, but the husband has no desire to go with the four kids on his own, and I am not sure I can blame him. I am still not sure it is a good idea or that I am up for it, but we shall see.

The first day of Pesach was beautiful. The seder was very very nice, even if I was numb. We actually pushed my recliner over to the table so I could sit more comfortably (the dining room chairs are not good for my numbness) and I had some great snuggles with my little ones during the seder.

The food, though a lot of work, has been great. Husband did the shopping from the lists that we made last year after Pesach, based on what we used last year. I never left the house to enter a store, which is really really awesome. I haven't needed calcium IV as much this year, in preparation for the holiday, as I did last year but it seems that some is unavoidable.

All in all, things are B"H going great. I wish I felt better, but we are here, celebrating together, and happy even if I am quite numb.

Coming up for air

I am exhausted. Dealing with a sick child, beeping pulseox alarms and adjusting oxygen levels all night for over a week would have been a lot for anyone.

And now the Pesach crunch starts. The cleaning, shopping, kashering and cooking.

I have rounded up some good help B"H. I finally found people who (mostly) show up. I have a mother and son team here now doing the bedrooms.

Tonight I have a doctor's appointment for myself to refill prescriptions and my husband is taking my son for a haircut and to buy him a new suit since his old suit is too small. I am really tempted to cancel my appointment and sleep, but plugging away and doing what must be done is too important.

Last night I defrosted the freezer. Our Pesach meat order is coming tomorrow IY"H so it needed to be done. The wonder of a non frost free freezer is, once it is defrosted and wiped down it looks like new. It may not be frost free, but it is practically self cleaning.

One day at a time, one project at a time, and on days like today, one hour at a time we get through, do and conquer. If I let the exhaustion get me down and stop pushing and moving to the best of my abilities it piles up and buries me.

Friday we went through the bags of gorgeous hand me down clothing a friend sent our way. As much as the timing wasn't wonderful, right before Shabbos, the clothing was. We were able to put away nice new clothing for each of the girls for Pesach.

I am tired, rambling and not making much sense, so I will end here.

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.

Today was a really really busy day

and I enjoyed it thoroughly.

Driving went well. I spent a bunch of time snuggling my kids. It was a productive day as well.

I have a packing list, though I am far from packed. I had laundry to do, but due to a quirk of the machine it didn't get turned on when we thought it did. At this point there are still too many things hanging up to dry for me to pack tonight. Outfits have been put together for my son for the next three days, since it is one of my evening jobs and I could do it now. I have the train schedule and the labs my oncologist needs printed out, and I feel like things are under control.

Packing for just me is so much easier and less stressful than packing for my family. It also helps that I was there last year and I know what to expect. I have even been on the train before. We took a trip to Haifa, on the train, when my mother came two years ago. We just went, turned around and came right back home. It is a great train and the trip was fun, so I am looking forward to a relaxing journey to my retreat, despite the fact that I won't be on the bus because of my appointment.

Tomorrow morning I need to pack, go for blood work, go to the oncologist and then catch a train to my retreat. I will be off line for a couple days, which is actually a bit nerve wracking. I will have to have a friend check for my blood test results for me, or call and hope the nurse will give them to me over the phone. Either way, if all goes well I will be off line, so hopefully there won't be any updates before Wednesday.

I have just been so busy

I am zapping my energy on a daily basis, in a good way.

Between my kids, driving, PT, cleaning the house, and trying to keep everything together I haven't had much time for anything else, including my blog. I am sorry.

There isn't much to report. I see my oncologist Monday and then leave for my retreat.

Tomorrow (Sunday) I need to pack and print labs, after I get back from my driving lessons in Jerusalem in the morning. I really should go for blood work in the morning, but I stayed up too late tonight for that to happen.

Normalizing

My calcium is coming down. It is in the normal range now, which is a huge relief. I am a bit tingly and twitchy from the drop, but not horribly. I am able to sleep, which is good because I am exhausted.

The kids are pretty much back on schedule from our Shabbos away.

I am searching for a new helper. My house really needs to be put back together, and with PT, driving and making sure the kids know I am here for them and the little bit of cooking I am managing, there just is no way I can keep the house up to par without help.

Sheets need to be changed, laundry folded, bathrooms washed, and I am already pushing things without trying to do all of the things that others could help with, if only there was someone to help.

Busy and exhausted

We went away to for Shabbos and it was B"H great. Getting there was hard. Packing and getting out took a lot of energy and I was ready to give up before we got out. B"H my husband pulled through and we got out of here with most of what we needed.

The almost last straw was Thursday night when my daughter let me know she needed a kilo (2.2lbs) of challah dough since they were braiding challah at school Friday. That meant that I needed to make challah dough Friday morning and bake her challahs after she got home from school before we could leave.

It really was a bracha, I made a full (2.5kilo/5lb) batch of dough and made what she didn't need into kokosh cakes and cinnamon rolls which we brought with us.

Shabbos morning when we discovered that the kitchen was locked I had plenty of cake and cinnamon rolls to share, as well as the grape juice we brought from home just in case. As usual, the frustration was really a blessing, and not just for me, for many other hungry children and women as well.

Driving lessons and PT are going fine. I am exhausted but getting out every day is good for me. I am living in a haze from being so tired, but it is still good.

My helper hasn't shown up for a month and a half, so the house is starting to fall apart. I need to find someone new desperately. I certainly can't count on the lady I had to help change beds, organize the girls room with them or do any of the other house keeping jobs I needed her for.

Today she didn't show up, she didn't call and she didn't answer her phone when I called.

I can't do everything. As it is I am doing too much. The great thing is, I am too tired to care much that the house isn't as I would generally like it.

Next week is my Beit Natan retreat for women with cancer. I am looking forward to it. I will be getting there on my own, by train, since the bus leaves Monday morning at 9am and I have an oncologist appointment Monday morning at 9:45 which I was not able to change. I love the train though. It is quiet, comfortable and the views are breath taking.

Twitchy

So my blood work yesterday clearly showed exactly why I was feeling so well. Oddly enough it wasn't good news. My calcium was high (not normal, but actually dangerously high) for the first time in about a year and a half. My phosphorus was also very high, which is a dangerous combination. The two combined could cause serious kidney damage.

So my medications were changed and now my levels are dropping, as they need to. With that comes the numbness, twitching and misery. As I learned long ago, the symptoms don't just come with low calcium, they also come with dropping levels no matter whether they are within the normal range or not.

Besides that, driving goes well. My US license, which was at my inlaws, is on its way here. I will IY"H have it in hand soon. That is one big thing off my list of "to dos" and a sigh of relief from me!

When I was feeling really well this week (thank you high calcium levels!) we decided I was up to going away this Shabbos. There is a "Shabbos Hisachdus" - a together Shabbos, with the Bostoner Rebbe, who is here to be with his chassidim.

I am a bit overwhelmed with the idea now that I am not feeling well. I am worried about leaving my comfortable chair without pressure points that make the numbness worse, sleeping in a strange bed which may not be okay, when I am already having trouble sleeping, and sleeping while numb is next to impossible.

There is also laundry, packing, getting the kids ready and traveling, while numb and feeling terrible.

But the kids are excited, my husband is excited and I was happy as well. I got a suitcase down from the attic and dusted off and IY"H we will get there and enjoy it.

Doing just fine B"H

Driving is fine B"H. The first lesson was nerve wracking, but the second one I was much more relaxed and things flowed much more naturally. The teacher asked what was different and I told her I just wasn't nervous any more. Mind over matter, or matter over mind.

I am so so glad I decided to do this well before my trip.

On the numb and tingly front, I really am not doing badly at all. In the evening, when my meds are due after a busy day I am a bit numb, but nothing terrible. After to how things were with the bad batch of medication, I am just so so happy to be doing this well! B"H!

I took the kids to the dentist (minus the one home with DH with a stomach virus) and it was a long day, but it wasn't too much. I am looking forward to tomorrow home, resting and recuperating before my next driving lesson Thursday.

All in all, I am busy. I am using all my energy and pushing my limits and B"H doing pretty well with it.

Pushing my limits, but still smiling

It has been a week of doctor's appointments, PT and driving. It has been a good week, but I am exhausted and obviously not doing a good job keeping up here. My cleaning/organizing/helper didn't show up either of the times she was supposed to come this week, which on a normal week would be hard, but this week it was upsetting. B"H My husband stepped up and helped a lot, despite working long hours, but this is the second week in a row she hasn't come and it is getting frustrating. 10 weeks until Pesach and I need some reliable help to get there.

I put off making challah all week and we have company coming IY"H for Shabbos so it has to happen tomorrow. I also have to clean up, make my son's room into the guest room, and I would like to make some kind of dessert. The request was brownies, which are one of my favorites as well.

I think it is time to teach my older kids how to bake brownies and some other simple desserts besides peanut butter rice crispy treats. They are a wonderful treat, but they use corn syrup which isn't healthy, cheap or easy to procure in this country.

Maybe I will wait until they get home from school and see if anyone is up for a challenge tomorrow.

Congratulations to me!

I started driving lessons yesterday, which was an experience. I drove in the US for 12 years before we moved to Israel, but since I didn't convert my license to an Israeli license in the first 3 years I have to start from the beginning like a new driver.

Today I took my written driving test and passed it, which was honestly close to a miracle since the English was poor and the English study book totally totally ridiculous. Instead of explaining what things were it said "red light" "light with white circle" and "red and white curb".

A good friend helped me a bit but really it obviously that He wanted me to pass on the first try. Nothing else made sense.

I got the application for the Beit Natan winter retreat and reserved my spot. Then I checked the calendar and found out that the morning everyone is leaving for Nir Etzion I have my oncologist appointment! I am not going to make the bus. I tried changing my appointment, but it was impossible. I called to cancel going on the retreat but they encouraged me to take a train and a cab and get there on my own.

If I am feeling up for it I think it is a good solution. It would be a huge disappointment to miss the trip. I have people I want to see and I could use a couple days of relaxation, lectures and chizuk (encouragement).

All in all, it has been a good, though exhausting, couple days and there are more of the same to come. Between driving lessons, physical therapy and the upcoming retreat I have a busy month!

Our reaction to life is colored by our experiences

Last week I felt so terrible. I know it was either from the medication or doing too much. With logic, I am quite certain it was that the medication was a bad lot, but I am still worried.

I spent this week B"H feeling much better, but afraid to push. I had a quiet week but spent it waiting for the symptoms to get worse or not doing things so they wouldn't.

Next week is a busy week. I have a meeting in Jerusalem Sunday, a driving lesson and PT on Monday, my written driving test on Tuesday (and I haven't even read the book), Wednesday I have PT again, etc. If I get through the week okay, it was obviously the medication, but I am worried about getting through it. What if I am not okay?

If I am not okay, my trip to the US will never work out either. I need to be more stable with my calcium levels to manage packing, flying, driving, visiting and touring. I will be away from my doctors and regular medical care. I will be doing more than normal, and I am worried.

Will I cancel the trip? At this point, I really hope not. We may have to change our plans, drive less, do less, and have my husband do the museums with the kids without me, but one way or another it has to work out.

Six years without my kids seeing their grandfathers, without my husband seeing his father, is just too long.

Pizza and cream of wheat

I am still tired and recovering but B"H doing a lot better than last week.

There isn't much exciting to report here. I reconnected with a couple good friends who I haven't spoke with in too long. I have been doing PT. I am tired.

Monday night my family went out with my husband's grandfather for pizza. It was a nice [though exhausting] evening. He is here from Chicago and we really don't get to see him often enough.

It is 3:30pm now and I really really want a nap but if I do I will not sleep tonight. I can't keep my eyes open. Soon the kids will all be back from getting my son off of his van and the noise will hopefully perk me back up. Right now the only other person in the house is one of my neighbor's children (though I guess she is a neighbor herself, as well).

The rain seems to have stopped, and we desperately need more. There are some isolated showers predicted for tomorrow, but I am hoping they turn into a full fledge storm.

While it was raining a friend mentioned cream of wheat and it sounded like the perfect comfort food for a cold rainy day. Since it is the only decent food the hospital here makes, I figured it can't be too hard, and it certainly wasn't. The hardest part was convincing DH that I really wanted him to buy it.

I may have to make it again tonight.

Phone calls and PT

I spent my morning on the phone with the pharmacy and then the pharmaceutical company. They are looking into the medication issue, or so they say and I hope! Since I stopped taking the new lot of medication I have been doing better and better, but I am not testing my theory by taking it again now. That was just too scary for me.

I spent this afternoon calling and trying to find reasonable plane tickets. The tickets I had been watching on line, first the price went down and then the price went away. I am having trouble finding "affordable" (as if flying a family of six international could be affordable?) tickets without crazy overnight stop overs. Hopefully the travel agent can help and I will just max out our credit card charging them, since waiting for my disability money is starting to look like it will mean missing out on the trip all together.

PT was fine. I remembered to go, which with my exhaustion and lack of memory lately, was really impressive. On my way home I bought two new pillows. I think that the 10-15th anniversaries should be celebrated with new sheets, towels, pillows and kitchen utensils. After 14 years my pillows are flat like pancakes, my sheets have holes and my towels are fraying. I have been embarrassed of our pillows when we have had company so now that I found a reasonably priced source I am hoping to bring home the two I can carry when I am in that area (which is pretty easy with PT just upstairs) until I have enough pillows or they run out.

Over all things are pretty good. I am exhausted and a bit numb and having some muscle cramps, but nothing like it was last week B"H! Feeling better is much appreciated.

I think I figured it out.

I was not okay last week, and as the week wore on, even with the IV calcium I was more and more twitchy, tingly and just feeling awful. At some point I realized that it all started not just with my trip to the mall, but also a new batch of medicine. Unfortunately we emptied all of that batch of medicine into my pill boxes, so we have no lot numbers, but on switching to a different batch I started feeling better.

I am still numb and tingly, but I can smile and do a bit without being absolutely miserable and each day is getting better instead of worse.

I need to call the pharmacy tomorrow and see if their computer records the lot numbers when they sell them. Something needs to be done though, because I can't be the only one affected.

Relying on medication to stay alive means that the manufacturer needs to make it right every single time. This is just not okay.

Patched up!

I got my IV and it helped quite a bit. I am seventy five percent less twitchy and tingly which is much appreciated. It took three sticks to get the IV started and the vein on the back of my left hand blew badly. It is still swollen as well as bruised, but as long as no one touches my hand it doesn't hurt too much. The relief was totally worth the pain.

I am a bit worried about my veins though. I have never been an easy stick, but this was one of the better nurses who has never had trouble like this on my before. After the second stick she didn't want to try again.

I hope to manage a long time without needing IV calcium again.

When I went to the doctor for the paperwork to give to the nurse for the IV, I also managed to get the doctor to sign off on my paperwork certifying me healthy enough to drive. I found that a bit ironic, but thank God, I don't have the conditions listed on the paper that would keep me from going behind the wheel!

I have some baking and cleaning to do now. I want to be up preparing for Shabbos when the kids walk in. Walking into a house that smells like cooking on a Friday is a huge moral booster for us all.

And the bear awakes

Since my surgery my calcium levels have been pretty much okay. A bit low at times, but nothing critical. I have also been doing very little physical activity since I didn't have the energy or strength.

B"H now I am doing a lot better. I am sleeping at night. I am doing more during the day.

Now, despite my medication my calcium numbers are more unstable and trending lower. I had recently started to wonder if things were better but I guess the problems were just hibernating.

Yesterday I went to the mall with a friend and got my permit so I can learn to drive in Israel. After that I went for physical therapy. It was an incredibly busy day. It was so nice to have such a normal and productive day, but now I am paying the price.

Today I am numb and tingly and not feeling well at all. I went for blood work and am waiting anxiously for results. I can't function feeling like this and I don't want to go into Shabbos this way. I am honestly hoping that my numbers show that I need IV and that I am able to get it tonight and feel better again.

I don't want to stop doing what I can do physically and keep my calcium levels stable, but I certainly don't want to feel like this.

Going to sleep early and getting up early has been a great change. I have been getting up by 5am, which means I am up to dress my son, and get him out then iron shirts, fix hair and toast sandwiches for my daughters.

As much as we all enjoy the time together and the positive interactions first thing in the morning it is a lot more physical activity for me. Since my surgery my husband has been doing those tasks, or (like the ironing and toasted sandwiches) they just didn't happen. I think it is energy well spent, but it all ads up.

I am trying not to nap during the day. I much prefer being exhausted and falling into bed at 9pm over napping during the day and having trouble sleeping at night. By 6pm I am ready to cry from exhaustion, but I am so afraid to throw off my schedule.

Life is such a balance.

I am here...

My calcium is low and I am not feeling great. I have been going to sleep by 9pm, which is a wonderful change from being exhausted and unable to sleep. I am still tired, but B"H my head is a lot clearer and I am not as snappy.

I finally called my oncologist and left a message Sunday, but haven't heard back yet. If I don't hear today I may call and leave another message tomorrow. Otherwise I see her next month.

My next neck ultrasound was rescheduled from April to March. It seems my radiologist is going to be out of the country on the original date. I am just as happy to have it sooner. Of course the phone call from the hospital radiology department came up on caller ID the same way that the oncologist would have, which of course sent my heart into a flutter of anxiety.

As much as I need answers, I really really don't want them.

The Beit Natan retreat for women with cancer is coming up. It is the end of February and I am hoping to go. Especially since there was no English speaking support group I really look forward to the emotional support of people who understand, in some way or another, what I am going through. Both cancer and the chronic illnesses that cancer leaves in its wake are well known among the ladies there.

Sunday was my 14th wedding anniversary! Honestly, I was too tired to celebrate and was in bed asleep before 9pm, but it was a milestone. I am having a hard time believing it has been that long. It feels like we just got married. I am considering a belated celebration. I just have to figure out what to do that would be special but not use more energy than I have.

Final results in

Thyroglobilin not undetectable, even with my TSH suppressed. In English, tumor markers found. Not quite all clear.

I guess I have to call the oncologist next week.

I think I am going to ask, that if she wants to do the RAI again, to push it off as long as we can. I would love to wait until we are back from our trip and the kids are back in school. I really don't want to deal with it ever, but at least I want to feel as well as possible and go into the trip feeling as well as I can.

Maybe she will still be comfortable watching and waiting and follow my thyroglobilin. I am not sure. I won't know until I call.

For now I am here, baking challah, loving my kids and living a blessed life. What will be is what is meant to be, but I have to do my part and try my best to make informed decisions on my health and for my family.

Good friends just knows

A bunch of my friends planned a brunch for this morning. The planning wasn't so easily since different times worked for different people and first it was on, then it was off, then it was going to be Saturday night, then it was this morning again.

When I went to bed last night it was most definitely not going to be this morning, and I don't do well with last minute changes of schedule, so that was that. Happening or not I wasn't going to be making it there.

5:30am I woke up. 8:30am the kids were all at school and I was getting ready to take a nap when the phone rang. It was my friend, the brunch was on and she would be at my house in 20 minutes to pick me up.

She knew full well that if I had to get there on my own I would stay home.

I had a wonderful time. I am so so glad I went. It raised my spirits and made me feel a lot more positive, even if I was so tired I couldn't move. I ended up sleeping from 8pm-11:30pm and am not wide awake at 4am. I might have slept through the night but my wonderful husband woke me so I could eat and take my medications. It was necessary, but the sleeping through the night that I had been working so hard on this week is now back to square one.

All in all, good friends, lots of smiles and laughter, out of the house for fun and not appointments, it is just what my friends ordered! It is a remedy I am very very happy I took the "medicine" they prescribed.

I am happy for the ones I have.

I really am.

I love my kids.

But I would love more.

DH and I were discussing children, babies and my health this morning. Assuming I am not doing the RAI (oral radiation) again, I am the most stable I have been since my original surgery. We have B"H seem to have found a medication dosage and schedule that is working pretty well to keep my calcium in check and my numbness is minimal unless I do too much.

I am exhausted from not sleeping, but a baby wouldn't change that much.

Unless it is another sick baby.

A healthy nursing baby I could do. My energy is limited, but I do baby. Sitting, cuddling, napping, nursing... I would love one.

But what if it ends up being another difficult pregnancy, baby in the NICU, pumping, tube feeding, suctioning so it can breathe baby? After my son was born I had days I forgot to eat, nights I didn't care to sleep, and hours upon hours standing at his bedside with no thought of my discomfort of postpartum status. I was back and forth to the hospital daily, except when I stayed over on a cot, which was no picnic either. He was my one focus and worry, as it should have been.

That I can't do again now. With my health issues it would be disastrous.

If only we could know for certain that it would be a healthy baby I would have another four (one at a time please!).

How does one make this kind of decision? When we got married we hadn't even considered not having a large family. What ever God gives us is what we wanted.

But for now at least it just doesn't seem to be an option. Sometimes I am okay with it, since I do have four lovely children, but sometimes it just isn't okay. Today is one of those days.

It isn't that the children I have aren't enough for me, but it feels like a part of my life, children I could love and care for, have been stolen away by my cancer.

From sick kid to school celebrations

I don't have much time to breath, update or sleep.

The misabat bat mitzvah was beautiful B"H. I am too tired to translate, but there were 88 girls from the three parallel 6th grades singing and dancing and moving in a choreographed routine with such joy and unity that it made me cry happy tears. This is such a change from the class of 8 we left behind in the states.

I didn't even bother wiping my eyes, just my chin as it dripped. I am such a sap. I cry at all of the school parties, and I bawled at this one.

I can't even complain that the whole thing lasted 3.5 hours. It was totally worth it. As tired as I am, I didn't fall asleep until I sat down in the bus on the way home. It was that good.

It is such a blessing to live here. It is such a blessing to live. I really appreciate making it to my children's celebrations and events. I plan on making it to my grandchildren's as well, but between my own health issues and losing my father as a teen I really appreciate would I am not missing.

Sick kiddo

I needed sleep badly enough that I was heading to bed early tonight. I was in my bed when the little guy woke up hallucinating about bubbles. I have been up for the last four hours comforting him and trying to convince him that the bubbles and good, yummy even. He isn't buying it. B"H he is asleep at the moment and his heart rate is down a tad, so hopefully that means that the medications are kicking in and his temperature lower.

All in all, no sleep for the mommy, ever. I would happily give up a life time of sleep for my cutie though.

Sorry for disappearing.

I ended up sleeping most of Thursday. Every time I sat down I fell asleep. I couldn't keep my eyes open. I had someone (finally) show up to help straighted up the house, but I didn't have the energy to direct her so some vital things didn't get done. B"H Some things did happen, but I could have used her time so much better and had more time as well. I hope she comes back next week and I am up to telling her what to do and where things are.

Friday I was in "wonder woman" mode, trying to do more than I can. First I made chocolate mint brownies, which went quite well. After a bit of a rest I made sushi. Making sushi requires a lot more shoulder movement than I had reckoned. By the time I was done I needed pain killers and a nap. Cutting vegis, scooping rice and smoothing it onto the nori, rolling up the rolls and slicing them are are shoulder dependent activities.

I am thinking that future sushi should be bought, which is really sad since I can make it so inexpensively and it is a fortune to purchase.

Besides that, we are doing great B"H. The kids are happy. The house is in decent shape. I had flowers for Shabbos. We had good food and the girls were great helpers and Shabbos was B"H a pleasure.

I am still having trouble sleeping. I think a lot of it is because I keep on wearing myself out and napping though. After going to sleep at 9:45pm I was awake from 2:30am-5:30am last night, tired but unable to fall back to sleep.

It is better than before though B"H. At least now there are times I am falling asleep okay and I am not going days with no sleep at all!

We are day 75 of my 30-90 days for my disability back payments, if they didn't mean business days. It would be so nice to see the deposit in my account, pay back the money to I owe the credit card and for surgery and book plane tickets. I really hope that the money comes through in the next two weeks. Waiting is hard.

B"H I think this is good news...

My TG (thyroglobulin) levels came back really low. I haven't spoken with my oncologist yet, I was supposed to call her with the results but today was really busy and I didn't get the results until late. I don't know what she is thinking or decided, but I am hoping that this means we aren't doing RAI again now. On the one hand getting rid of stray cancer cells is smart, on the other hand RAI is miserable, the increased risk of other cancers that comes along with the RAI is scary, separation from the family is really hard and it made me sick for months after and I want to feel well for our trip.

I should call tomorrow. It would be the right thing to do. I really don't want to though, so we will see.

We missed my son's van in this morning. I decided that that meant it was time to go take care of our passports and my orthotics. The passports was a wild goose chase. They changed all of the hours as of Jan 1st and when I looked at their website last it was before that. They offices were closed Wednesday morning so we ran around and paid for cabs and still need to go back and try again another time.

I did B"H get casted for new orthotics, so my husband thinks that the trip was worth it. I came home a mess and slept a good part of the day, first in my chair and then in my bed, so I really don't know. I will have a better feeling for whether it was worth it or not when I pick up my orthotics next week. If they fix my foot pain it won't have been a wasted trip.

I need to get insurance approval before I pick them up... I also have to figure out if I am bringing my kids who need orthotics with me to get casted when I pick my orthotics up next week. I will have to check their afternoon hours and go from there.

This evening I was out for reflexology and massage and totally forgot to buy melatonin. I left my appointment and headed right for the clothing stores looking for a while blouse with buttons for my oldest. She has a performance next week and needed it. While I was shopping I found a couple cute skirts for the girls and bought them too, which was pure hashgacha (divine providence). When I got home I told my daughter I got her a while blouse and she apologized and sheepishly told me she needed a black skirt as well and had forgotten to tell me. One of the two skirts I bought was black and fit her beautifully.

I may not manage to take care of myself, and get my melatonin, but I B"H managed to take care of my daughter in a way I didn't even know she needed to be taken care of. The smile on her face was worth a lot of sleepless nights.

This is a record

I still don't have my lab test results from Thursday.

I hope they didn't lose my blood or mess up the tests, this kind of wait has never happened before.

Sleep didn't happen again last night. I got a bit of a nap tonight and whether I sleep tonight or not I am determined to buy melatonin to try and see if it helps tomorrow.

Today was a quiet, at home, day. I got a couple loads of wash done and said okay to three teenage boys sleeping here for Shabbos and eating Shabbos lunch with us.

DH and I made a shopping list, since we will need more matbucha and hummus (prepared salads) for Shabbos since we have guests. I need to check out the challah situation. I did make challah last weeks so I may need to bake before Shabbos. Either way I have to make a cake or cookies.

Saying yes to their request made my quiet week a little less quiet, but that isn't a bad thing. I love company.

I slept!

I got four hours of sleep last night and a four hour nap this morning. I can't say I feel like a new woman, but I am feeling a bit more emotionally on keel and definitely feel like smiling again.

Even better, I had a group buy coupon for bagels in Jerusalem. I paid 20nis a couple for 49nis worth of bagels (a dozen) and my good friend did the same. Her husband picked up our bagels for us and I had a wonderful treat tonight!

Lab results are still not in. I was supposed to call my oncologist with results today, and obviously that didn't happen. I have decided that the results are going to be good though and we are going to avoid the RAI and all will be fine.

I made a schedule for our trip to the US. I have a groupon for a hotel stay in New Hampshire so we had to decide when to use it and book our room. The coupon is good for 2 nights in a family suite, suitable for up to six people. Since so many were sold I was worried that if we waited too long we wouldn't get the dates we needed unless we booked early, so I did that today.

I am looking forward to showing my children New Hampshire. Covered bridges, shady walks through forest paths, quaint tourist shops and a bit of time on our own as a family to relax without needing to remember we are in someone else's home and on their schedule. I think it will be a great time for relaxation and family memories. If the weather is good we can explore and barbeque outdoors and if not we can play boardgames, explore the little museums and shops and eat bagels and sandwiches.

I am really enjoying planning this trip. We have never had a vacation before, not in 14 years of marriage.

Still no lab results

I am getting frustrated.

Usually I get results next day, but there are still no results from my labs drawn on Thursday morning.

I have to make it into Jerusalem this week to pick up wheat gluten and bagels (I got a great deal on prepaid group buy coupons) and get casted for new orthotics since my helper threw one of mine out long long ago and I have been in pain when I walk ever since. Today I was in Jerusalem for my special needs mother's support group.

As exhausted as I am, I am incredibly awake considering the fact that I haven't been sleeping. I have been averaging 3-4 hours a night even if I spend 8 hours in bed. I need to get to the health food store and get some melatonin to try. The other things I have tried just didn't do the job. Tea is wonderful, but drinking that much before bed time isn't always a good idea. I am already ready to resort to opening the sealed box of valium that has been sitting in my cabinet since my first surgery. It was given to me as a muscle relaxant, but I am pretty sure it would help more than just my tense muscles.

Really, sleep deprivation is making me a bit silly, weepy and punch happy. I am already a bit stressed waiting for results. Sleep deprivation on top of that is a bit much.

I don't know what is wrong with my brain

I spent 5 hours in bed last night unable to sleep. Five. I was up 10 times in those five hours to use the bathroom, once to try the Bach Rescue Remedy that I bought last week but had never tried before, but mostly I was just stuck. I was exhausted but with my brain going 90 miles an hour, unable to shut down.

Everything was going through my head, not just this weeks issues and my pending test restults. I was thinking of things to bring to the US on my trip that could help others, remembering appointments, paperwork I need to do, rearranging books on my bookshelves, cleaning the playroom/attic etc. It was six hours of random thoughts that just wouldn't shut off. Between my head and some odd noises sleep just wasn't to be had.

And now I am up again, afraid to go to bed and not be able to sleep.

I am so so tired,

I slept last night. Napped this morning. Fell asleep in my chair this afternoon and once my husband came home went to bed for another three hour nap. I just can't keep my eyes open.

The house has been falling apart this week. Not only am I too tired to even contemplate getting much done, neither of my paid helpers came. The high school girls who came to "help" yesterday decided it was a good week to make cookies with the kids. I needed the nap, so their help was appreciated, but my kitchen certainly suffered.

It would have been so nice if they had noticed the sink and counter full of dishes waiting to be washed.

I am trying to decide if I should go to the doctor. I am prophylactic antibiotics to prevent strep, but my throat hurts, I am feeling lousy and there is a lot of strep going around. I am pretty sure they can't culture when I am on antibiotics though.

I am glad that this week of injections and blood tests are over. It will be nice to have my mornings back. It will be even nicer to have the answers. Waiting is hard.

Today was my day off

I didn't have any injections or blood tests today!

I had a lot of trouble sleeping last night though. My stomach wasn't happy and I didn't get any rest until the early hours of the morning. I slept in the morning, went for reflexology in the afternoon and went to a good friend's daughter's sheva brachos in the evening. It was a busy busy, in a very good way, day.

I am tired, but happy.

I also invested in a bottle of Bach Rescue Remedy to see if it will help me fall asleep at night. I don't know that it will help, but I have been having trouble some nights because my brain just doesn't want to turn off. I am so tired, I need the sleep.

Day two done, on to day three

So far, I am exhausted, but it seems I have a cold as well, so I am not really surprised.

I got my second shot yesterday morning and this morning went for my second set of blood tests. IY"H (God willing) I will have the results from todays blood tests tomorrow morning. I am a bit nervous, but mostly tired and praying. I want the results to be useful and accurate, no matter what they are. I would like to know with clarity what we should be doing for treatment now.

Wouldn't it be nice if we always had clarity in life? If we knew what was for our best? I have always joked that my kids came without their instruction manuals and forgot to read the "what to expect" books. Really, I would like a comprehensive manual for my life, not just for parenting. Most worry is just not knowing what is next. Once I have answers I can settle down and know it is right and proceed. It is uncertainty that is difficult.

Day one done

I did my blood work for day one of my week of stimulated blood tests. Tomorrow is the next shot, Tuesday the next set of blood tests and then I have Wednesday off and don't have labs again until Thursday.

I got a copy of my pathology from the surgery at my oncologist visit last week, but I didn't actually take the mental energy to read and translate it right away and then I needed someone to read it for me as well because I wasn't sure I understood it. I was hoping I got it wrong.

It seems that, according to the pathology, they go the tumor out, but that there were cancerous cells found in the muscle next to the tumor as well.

That does not give me a warm and happy feeling.

It actually makes me a bit sick to my stomach.

I just want all of the cancer gone. Gone, finished, out and dead.