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.