Wonder of wonders

Despite issues sleeping last night (there was an odd humming noise outside that was bothering me, it turns out it was a neighbors extra refrigerator running in their front yard) I was up and out this morning. My blood went out with the early driver and I got results already!! My calcium is still low, but not low enough for IV. I am feeling great so that is just fine with me.

All in all, we are busy, happy and eating well.

My kids always professed not to like potato kugel, but they are eating it up at a rapid rate. We have gone through several sponge cakes, lots of meringues, lots of mashed potatoes, plenty of chicken with home made duck sauce, and roast as well. We are B"H eating well. The kids have been helping with the peeling.

The pickles were wonderful a day and a half after pickling them, but the peeled cucumbers turn from yummy to yummy to mushy really quickly. By day two they aren't as good. Since we don't generally have much time to wait for them to pickle on Pesach and always have plenty of pickle eaters available that is just fine with me! If we weren't out of cucumbers we would make pickles daily knowing that they will be yummy, fresh and eaten. Next year we have to buy more cucumbers.

I am signing off to make more meringues and cook up some custard base for ice cream. This is certainly a great holiday for fresh food and eating well.

We are having a wonderful holiday

I am B"H feeling quite well.

Despite all of the peeling and cooking I am feeling much better than I have in weeks. It doesn't make sense but I am so happy. I am trying to decide if I should even go for blood tests in the morning.

The first day of Pesach was a pleasure. The kids stayed up for most of the seder, had lots to say, and it was a joy. The food came out wonderfully and we only lost one half of a bottle of grape juice to the floor.

I declare it a success!!

Pesach here we come!

There is still lots to do, but I am B"H feeling a lot better.

My husband is home from work and doing the bedikah (searching for any grain products that were in touch with water for more than 18 minutes before they were fully cooked, which we may have missed, as well as the pieces we hid for him to find).

I got my IV this afternoon and spent the evening getting things done. The house was basically waiting for him when he walked in, and that felt good.

I still have a ton of cooking to do, company coming, and the seder to prepare for, but if we got this far I am sure that we will get there too.

B"H yom yom.

Great news!

When I was at the doctor's office for blood tests this morning the nurse let me know that due to pressure the lab has agreed to do all blood tests on Wednesday and Thursday of this week. I can get my calcium level checked locally after all!!

B"H yom yom. That is one major worry off my head.

There is work to do but I can't,

This is really really hard.

I am so numb right now, my calcium is dangerous low, and the more I do the worse the symptoms get. The floor needs to be swept (challah crumbs from our last chometz meal) and preferably washed as well and my husband is working. I don't expect him home before 2am and the sweeping must happen before the kids get up in the morning.

There are little things here and there that must be done, and I can't do them. My doctor said to get help and I tried, but there is none to be had the next couple days. Pesach is upon us and I am too sick to do what needs to be done.

This is one the biggest challenges of my sickness so far.

Woah, that is not cool.

Because my surgery to remove the cancer damaged my parathyroids my body doesn't have the ability to regulate my calcium levels. I take medication multiple times a day and when I do too much my levels drop anyway and I end up needing IV.

I have been having major issues with my calcium because I have been doing too much getting ready for Pesach. Low calcium is dangerous, and the more I do the lower is gets. High calcium is dangerous as well, so we have to do blood tests to determine exactly where my calcium is and treat accordingly.

This week we did lab tests three times and IV twice.

Last night, when I was at the office for my IV, the nurse informed me that during chol hamoed Pesach (the semi holiday middle days when we can cook, drive, do blood tets...) they are only doing limited tests, and calcium is not one of them. They are basically just doing CBCs, clotting tests and fertility tests.

What we are going to do and how I am going to survive the week is a good question. It isn't like I can sit around doing nothing but davening that my calcium stays up. My husband is working, my four kids are home and we don't eat processed foods or foods cooked outside of our house.

It is a week of kids, cooking and pot washing.

I made an appointment for Sunday to talk to my doctor and am going to try not to worry about this until then. I hope she has a good answer. I really hope her answer doesn't involve trips to the hospital for blood tests.

This is something I wasn't expecting.

Doing the right thing isn't always easy!

Today's excitement was the type that made my heart flutter and my hopes high. I logged into my bank account to see what the balance was and found it with many thousands of dollars, none of which were there yesterday or was I expecting to see today. After five seconds of daydreaming about paying off credit cards, therefor getting out of debt, and hoping it was for real I dialed the phone, asked some questions and was told that the transfer would be reversed on Monday.

On the one hand, I know I did the right thing. If Hashem wants me to have money, He will send it to me in a legal way, money that is really mine and for keeps, not a mistaken money transfer. I expect that they would have figured it out eventually and it would have been big trouble if the money had been transferred to pay the credit card, since it wasn't really mine... but I WANT IT.

Oh well. Generally I am okay with how things are. I don't like our debt, but we came by it honestly, paying for my son's elemental formula which we had no insurance coverage for. We kept him alive and thriving and that is worth being in debt for. We have found ways of getting his formula without adding to our debt and we are currently B"H keeping from getting further into debt.

On a different note, I am happy to report that I B"H had a very productive day. The kitchen is done, ready for Pesach, except for washing down and changing the table cloth on the kitchen table. My brother in law helped cover the counters and back splashes and it went quickly and relatively easily. He was a huge huge help and we are glad that he came!

I was up early for be blood tests and the extra exertion did drop my calcium enough that I needed IV calcium again, but though I am tingly and definitely low I am not feeling as bad as I was the beginning of the week B"H. I was able to leave the children playing with my neighbors children when I went in, and was back pretty quickly. Chasdei Hashem.

Life is made up of many miniature miracles

Tuesday my cleaning lady came. She is a wonderful woman who works hard and with love. When she arrived she asked if I wanted more hours, since her husband was home with her kids. I said I would take what ever she could give me!

She worked four and a half hours instead of her normal three. She moved furniture and washed under everything. It was exactly what needed to be done for Pesach and I was so grateful that she gave us the extra time and energy when I knew she had her own house to clean.

When she was done I tried to pay her for the four and a half hours but she only wanted for three. She wanted us to take the rest as her gift since things have been so hard and I am supposed to be resting. Not only had I asked her to stay and work, I know that things are financially difficult in her house and Pesach is an expensive holiday so I was intent on paying for the work she did.

20 shekel I managed to put into her bag without her noticing, the other fifty I told her I didn't have the right change. It was a 200 shekel bill or nothing.

She wasn't pleased. I told her that the money wasn't mine, it was from my abba (father). She pointed at my husband and asked if I meant him. I pointed up and said no "Him". She finally agreed to take it.

The total I paid her was seventy shekel more than I pay her most weeks, which is a very very small sum compared to what she did for us. We are much more prepared and at ease with the fact that Pesach is coming.

Later the same day my husband was at work and one of our neighbors came to shop. She handed him an envelope and said it was for me. There was a thank you note in there for the mishloach manos (Purim holiday gift) and my husbands reading of Megilas Esther and forty shekel. Considering the fact that we have given her mishloach manos and she has been at our house every year for my husband's reading of Megilas Esther the last five years and we never got a thank you note or gift. Though it was sweet it was a little odd.

Today we got the other thirty shekel that I promised He was paying. A gift certficate we were expecting arrived and instead of 500 shekel it was 530. In any other situation it would have been an odd amount, but today we just smiled.

There can never be too many psalms

My memory is not what it used to be.

I am a part of a group of women who recite the whole safer tehillim (book of psalms) daily in the merit of sick people who we know are in need of a full recovery. We have it divided up so each section is being said by two different women, just in case anyone has an emergency and can't say or forgets.

I generally say my section after my morning prayers, but on occasion I don't have time and they get pushed off for later in the day.

This afternoon I sat down to say my tehillim and when I was half way through my husband told me that I had said them already in the morning, and my oldest daughter concurred. My second daughter proceeded to tell me that she had decided to say my section today as well. I finished, because I had already started and I enjoy saying them, but we laughed about the fact that instead of once today it seems my household managed to say my section three times.

Happy vacation day number two.

We had another happy day B"H.

The kids played, beaded and did a bit of cleaning.

A wonderful teenage girl came and helped. I emptied the cabinets that I need for Pesach and she cleaned and lined them. B"H things are coming along. 180 organic eggs were delivered, my kids went with a wonderful high school girl to pick up the rest of our matza and a neighbor's daughter got our table plastic when she went to go get theirs.

We are making progress. The children are happy. Pesach is coming!

Tonight I need to finish washing dishes and in the morning we will scrub the kitchen counters. I am looking forward to ordering pizza for lunch tomorrow and have hotdogs with sourcraut waiting to be heated up for supper.

Sometimes those little things are really big.

I honestly haven't done much cleaning but I have done enough to make myself sick. My blood work from this morning looked almost as bad as I was feeling so my doctor ordered two vials of calcium via IV tonight. But she didn't stop there. She also gave me the name of a lady who sends out girls who volunteer their time and told me to let someone else do my Pesach cleaning.

Most doctors would have sent me to the hospital to deal with the calcium. A select few would have saved me the three days inpatient and done the IV in the office. It takes a very special doctor to do the IV and point me toward practical help so that I shouldn't do and shouldn't get sick and shouldn't need to come back for IV again too quickly.

The name on a slip of paper, the fact that she cared enough to tell me that she will take care of me if I make myself sick doing too much but that she wishes I wouldn't, and the genuine smile and well wishes combined to prove, yet again, what a special person my primary care doctor is.

Hopefully I will not need her help again this week but it is nice to know that she is there if I do.

Help! School vacation starts at 8:15am!

The girls are out for Pesach vacation! Their last day was Friday and they will be home for the next two and a half weeks.

There goes my morning naps, my running to blood draws without worrying about childcare and the last bits of quiet time to get work done, calls made and the house organized.

As much as I love them, I am tired. The idea of needing to keep on top of them to get dressed before noon, keep from making huge messes while I am trying to get the house cleaned and sit at the table when they eat is overwhelming.

I need to make them a list of jobs to do and either pay them to do them or come up with some other reward for jobs done. I need the energy to come up with a plan to make them productive members of the household over the next week until Pesach. It isn't vacation time, it is house cleaning time and they need to be part of the cleaning and helping without whining.

I am hoping that my worry is disproportionate. They are good kids.

I am just tired and overwhelmed.

Good neighbors make great days

My husband needed a helper this evening. Someone to help him clean out the freezer and to work with him. Cleaning on your own is lonely and slow and I had to go into Jerusalem this morning so I was spent, unable to be of assistance.

One of my neighbors had heard that my cleaning lady left and came by to offer that her son was looking for work. B"H. He is 14, a good solid kid, and a hard worker.

The freezer is done and DH is smiling.

IY"H tomorrow they move onto cleaning the mess that the workers left behind when they removed the tree. Then the kids can play out back without pine pitch and needles following them back into the house!

I have really been pushing my limits too much, even though I am trying to stick to directing more than cleaning, and I can feel it. There is no doubt that my calcium has dropped more, and it was already low. If I get to Pesach without needing IV it will be a miracle, even with the help of great neighbors.

For now, I will just bask in the glory of the fact that there are so many people who care and that my house is getting there! IY"H it will be sparkly clean and chometz free soon enough!

Big lego makes a lot of noise in the washing machine

Generally I spend quite a bit of time before Passover cleaning the toys that live in my living room/dining room area all year long. This year, either the toys survive the washing machine (it is a front loader) or they won't. I am not even trying to hand wash toys in the bathtub.

The Primo (toddler size Lego) are in the washing machine with the bathmat and they look like they are getting nice and clean and surviving their torture.

This is my combination of energy conservation and being productive and I am pretty happy that it seems to be working.

Next up, the washable dolls and after that Mister Potato Head. The dolls with hair will have to be hand cleaned by the girls who love them. My thirty year old wooden blocks already got to take a bath with one of the kids before the rule was put into force. It is probably best that way.

There is something very refreshing about having a house obsessively clean from top to bottom once a year.

A good sunshiny day.

Today was one of those days, the days you want to sing and smile.

Nothing especially good happened. The day started with my three year old throwing up on my bed, was followed by my cleaning lady informing me that she is leaving the country on Monday and moved onto my five year old getting a piece of flying (the way it was meant to, but not there) toy in her eye.

I was at the ped in the morning for the vomiting boy with pink eye and the afternoon for the girl with a probable corneal abrasion.

In terms of my health, I have been better but I have also been a lot worse. My calcium is low. It is low enough to cause lots of symptoms, but not low enough to do IV yet. My lymphocyte count is way back down again, close to where it was after the radiation, for no good reason as far as I can tell.

I would like things to be better, but I am not ready to start frowning yet.

Despite all that, it was a good day.

And then the heat broke. It went from the 90s to the 60s at about 4:30pm. A fog came in and the world was damp, shimmering and beautiful, and it turned from a good day to a great day.

It smells like rain, and we still need rain.

Washing the winter coats did the trick. Man plans and God laughs. We will happily take them back out again.

Progress

Like all other progress, today's was not linear.

My son's room was thoroughly cleaned for Passover, some kitchen cabinets were cleaned out and lined and we cleaned out the freezer closet. Big projects were started and not completed and that left the general feeling of chaos in the end.

Sometimes chaos has to come in order to set things right.

All of the too small and too big clothing (from three girls, who are blessed with many hand me downs) are in a pile in the girls room. The pile is about as tall as one of my children and threatening to take over their room, but their clothing shelves are organized and containing only what they wear.

In a perfect world I would have energy and sort it all into the respective sizes and save the nicest things for the girl who could wear it next. In my old world that would certainly happen.

In our current reality, we shall see.

The kids also started cleaning out their project drawers. We got to rehash and "ooh" and "ah" over many years worth of art projects, and put some of them away.

The messes that come from cleaning both represent progress and cause frustration.

We live in an unfinished world and sometimes our progress looks like anything but. Eventually we will see it for what it is.

Life has changed

Holidays are a big barometer of change.

This time last year I was cleaning for Pesach.

This year I am making lists of what needs to be done and instructing others on what to do to clean for Pesach.

This time last year I was right before surgery, harried, worried and feeling like my life was upside down.

This year my life is upside down, but upside down is starting to be normal.

Either way, we will get there.

The house will be cleaned, just like God asked of us. All chometz (leavened products) will be out. The kitchen will be cleaned, kashered, lined and covered. We will be cooking kosher for Passover food soon enough, and enjoying it!

It is just odd, and a bit disheartening, to see so clearly how much my life has changed, how much I rely on others and knowing it is likely not to change for the better.

I am very grateful that there are others who I can rely on. B"H because of my government disability payments we have the ability to pay for the help we need. HKBH takes care of us in an open way.

What is stronger than a tree?

We have a row of three huge pine trees at the edge of our yard to provide privacy to our yard and house.

They are ten years old and have grown from tiny trees to a full three stories tall!

They are huge, strong and beautiful.

They have withstood rain, hail, snow, oppressive heat and five consecutive years of drought and grown through it all. They had massive amounts of new growth through the greater than normal rain fall this winter and seemed to be flourishing.

Then it rained and the wind blew and the largest, most sheltered tree, the one in the middle, fell. It landed on the roof of my children's play house. It appears it would have knocked the air conditioning unit off of the outside of the house if the toy house hadn't stopped its fall.

The day didn't seem any windier than the ones that proceeded it. The trees are pretty sheltered. But now the tree is dead. We are just waiting for someone to cut it up and take it away so that the children can play in the yard without me fearing it falling further and landing on them.

My tree, my privacy is gone.

It is funny how strong something can seem, right until the moment it comes crashing down.

Medical papers

I think they may have been the 11th plague in Egypt.

No matter how hard I strive to keep them organized, they aren't for long.

I go to an appointment and try my best to guard the test results, especially if they are hand written and I don't have another copy. There are times I watch the doctor holding the results and have trouble listening because I am so focused on getting that ultrasound (or other) report back.

Then I leave.

And on the way home I check my stack of records.

And I don't have the ultrasound report.

I call.

No one in the hospital does either. It isn't on the doctor's desk or in my file.

And so it goes.

Medical papers either multiply or disappear.

Either we end up with three copies and an electronic copy, or none.

Tonight I am scanning a bunch of records in hopes that it will alleviate a bit of the "please please please give that back to me" thoughts during appointments. I hope to remember this lesson. I will try to scan documents as they come into the house so we don't end up without important documents in the future.

If only I could bring the electronic copies to appointments and not keep on having to deal with stacks of papers...

It was a long hard day, but I am happy.

My thee year old had a hearing test in the hospital in Jerusalem, on the other side of the city from his school. It required quite a bit of traveling to get from here to his school, his school to the hospital, the hospital to home and traveling exhausts me. I sit there in pain, holding the seatbelt away from my neck and bracing around every turn.

My son on the other hand cooperated wonderful with the testing. He is an old hat at hearing tests by now. It would have been great, except I forgot [or wishfully thought he might not need] the stroller. I am not as strong as I used to be, and he is heavier than he used to be B"H so my back and arms are quite sore now.

I got home just in time for the girls to arrive and to heat up lunch for the kids. Before long my oldest's friends descended. B"H My husband was home soon there after because the morning wiped me out and I couldn't pretend to be functional any more.

I had a quick rest then headed back to Jerusalem for my mommy support group. A bunch of my friends who also have special needs children get together, talk, eat, laugh and cry on a semi regular basis. As much as I don't have strength and going to bed would have seemed smarter I feel much better for having gone.

I am still tired enough that I am sure that this post is full of typos, but I am smiling, happy and feeling much more optimistic, despite the exhaustion.

Cough cough cough cancer

A while ago I was asked to join a group blog of mothers dealing with cancer. The site just launched and one of our first group projects was writing up our cancer diagnosis stories... I decided to share my story here as well.

There aren't many people who can attribute their cancer diagnosis to a bad bought of bronchitis. Coughing doesn't cause cancer, but it was the catalyst for my visit to the doctor. That doctor found my cancer.

February of 2009 I had bronchitis that just wouldn't go away. I was on breathing treatments, cough medications, antibiotics, pain medications, and still miserable. It burned to breathe and my doctor had me coming back frequently because the bronchitis wasn't responding to treatment.

One time, after about a month of being sick, I was sitting on the examining table and my doctor was standing and listening to me breathing and she got a funny look on her face. She asked me if I had thyroid issues and I said "no" and she proceeded to ask me to swallow, over and over again as she watched and felt my neck.

The mass was quite visible (my primary tumor was 4.5cm/almost 2" and there were multiple tumors). My doctor was concerned.

Within two days of my doctor's discovery, my bronchitis was much better. I had my first neck ultrasound within a week, followed by another ultrasound and biopsy. Confirmation came a couple of weeks later.

The news did not come as a shock. The ultrasound pictures had been enough for the radiologists to be quite confidant of what they were seeing and the reassurance they gave was "if you have to have cancer, thyroid cancer is one of the better ones to have."

My mother in law had had thyroid cancer, which hadn't spread and was resolved very easily, so I was inclined to believe the doctors reassurance. It wasn't until later in the journey that I found out how far my cancer had spread and that things would not be so quick and easy for me.

By the time my biopsy results came in I had already figure out, by comparing my ultrasound pictures to pictures I found on the internet, what type of thyroid cancer I had. The pattern of calcification was classic. The pictures were clear and the biopsy was just a formality.

There is a Hebrew term hashgacha pratis which loosely translated means Divine Providence. It refers to God's supervision and governance of every action and aspect of the world in which we live.

The hashgacha pratis throughout my journey has been clear and has given me a lot of strength. Not only was my diagnosis divinely orchestrated but my support system and coping skills were put into place before my diagnosis was even made.

Lion hugs and raspbellies

I had a hard day today and I needed some extra smiles.

B"H my kids were in tune to the fact, or at least willing to accommodate.

As they get older the interactions change, but the laughter and joy stay the same.

I can't blow raspberries on my 11 year old's belly any more and she protests the tickling, but she gives a great high five and a good firm bear hug. My nine year old is a great cuddler, but hates to be squeezed. With my five year old I can still get away with raspberries on occasion, cuddles and smooshes and lots of tickles.

My youngest gets the brunt of the raspberries. I get hysterical laughter from him by blowing his belly, his cheek, his neck and his arms. Then he hugs me and he growls. He growls and we laugh and hug tighter.

No matter what else is going on my kids are the light of my life, my laughter and my beacon of sanity.

Plans

I have a bunch of recipes saved and lots of plans for when I feel better.

I also have a big fear that that day won't come.

The hypoparathyroidism/hypocalcemia is here to stay and insistent on keeping me miserable, but there are drug trials underway and injectable medications on the horizon and that gives me hope.

So I continue to collect great sounding recipes and plans for the future, for when I feel better, and I pray that that day comes soon.

Until then I am appreciating my life for what it is. The pace may be slow, my ability to do and go not like it was "before" but my pain is a lot less than a year ago, our understanding of what we are facing is better, and most importantly I am alive to cuddle my kids, sing bed time songs, read stories, laugh and give kisses. We can love and hug and live together, even if I have to plan my whole day around how much energy I have and how numb I am starting out.

Curtains, clutter, time and energy.

It is a funny time of year.

My neighbors and I are in the midst of decluttering and spring cleaning (ostensibly getting ready for Pesach/Passover). Often we speak on the phone as we are doing our work. Moral support is needed, and plus, the cups I haven't used in 10 year may be exactly what my neighbor needs and the curtain material that my neighbor is getting rid of may be perfect on my son's window.

Some years I wonder if decluttering this way works. So far this year we are up several bags of hand me down clothing and some material for curtains and down a lot of papers and broken toys.

It takes a lot more energy, emotionally as well as physically, to get rid of stuff than take it, especially when the stuff is delivered to the door by the neighbors' willing children.

Life goes on. Thank God!

B"H today was a nice low key day. The kids went to school, I took my nap, made phone calls, rescheduled appointments and heated up lunch.

Days like this are wonderful.

No doctors.
No hospitals.
No news.
No running.
No fretting.

Just hugs, kisses, smiles and living.

Yes, I have things to deal with, life, and pressures, but I can appreciate today for what it is. B"H it is mine and I am going to live it no matter what kind of stress people may be trying to throw at me.

I am doing what I think God wants of me and there is a lot of peace in that.

New plan, living with cancer.

My surgeon is very unenthusiastic about going after the mass because of its location behind my carotid artery, relatively small size (1cm) and all of the scar tissue from my neck dissection. The oncologist agrees that the RAI isn't likely to take care of it without surgery, so the plan now is to watch and wait. We will be doing regular blood tests and ultrasounds and living with it.

So, I have cancer and it is okay.

I am not sure how I feel about this. I am greatly relieved not to be doing surgery or RAI again now, but I really really want this gone.

A new day and a new smile.

Today was B"H a good day. I went from the lab by my home to Jerusalem and hung out with a wonderful woman. We ate, we beaded, I shed just a couple tears, and we laughed.

Tomorrow I meet with my oncologist and my surgeon. IY"H tomorrow we will have a final plan.

For now I have good friends, adorable children and bedtime to attend to.

The waiting is over.

Blood test results are in and there were no miracles this time.

I don't have an appointment but the oncologist said to call her and come this week, preferably Wednesday or Thursday. The surgeon said he would be calling the oncologist Wednesday, so I plan on going over then to hear their thoughts when they are both have my neck on their minds. They are in the same hospital and meeting up with both of them in one day has worked out well in the past.

The surgeon says that there most likely (barring cancellations) will be a 6-8 week wait for surgery and that it will be a tough one because of the location of the tumor and all of the scar tissue from the previous surgery. He doesn't sound too excited about the prospect.

That won't give us much time from the surgery until the RAI, and I was hoping to still be on my thyroid medication so I could heal more easily after the surgery. It doesn't sound like that will be happening. I have to be off of my thyroid medication for 3-4 weeks before the RAI and the RAI isolation room is already booked starting May 23rd, 11 weeks and six days from today.

B"H we can do this. I am focusing on being grateful that there is surgery and treatment available.