hide 'der

We got home from a quick trip to the grandparents last night. Sydney was sound asleep in her bed, but Jack however had taken a late nap and was wide awake and happy. my Mr. Helpful stood in the bathroom as I unpacked some of my toiletries and got ready for bed. When he spied my Lovenox shot he became concerned.

Mama, Owie?
yeah, thats my shot. It gives me owies. It's ok.  

oh. Mama, no owie, k? 
no, i have to take the shot. It helps me make the baby big and strong.

no, no mama owie. 
It's ok Jack, I did shots when you were in my tummy so you would be big and strong.

No. Mama. Owie. 
and he grabs my shot and hides it under the bed.

I pretended not to see him hide it. and asked

HEY! wheres my shot?

He giggled, oh me hide 'der. (still sitting by the bed, he pointed under it)

Well give it to me! 
NO! no, mama owie.

I think that shot is still under the bed. I just grabbed another one from the box.
His concern was touching though :)

After spending like $40 on OTC heart-burn medications I was curious on how much a month I actually do spend, or maybe how much all the medications add up to, but thankfully insurance covers a LOT.

So the last time I was at Costco I took note on how much each bottle cost. but my list is still incomplete. I have most of them...the rest shouldn't make that much of a difference. It's things like tums, and a bottle of baby aspirin...etc. maybe adds $10.

Prescriptions:
Enoxaparin-1 a day (generic Lovenox) $975 for 24
Hydroxychlorine- 2 a day (generic) $52 for 60
Plaquneil
Vitamins:
Prenatal (1)    $18 for 90
Fish Oil (1)    $15 for 375
Calcium (1)   $8 for 500
Iron (4-6)          $20 for 90
Vitamin C (1-2) ? $5 for a month

OTC
Baby Asprin (1)         ? $5
Tums (plethora)            $15 for the large extra strength
Pepsid (chewable)(1)  ?$8
Zantac  (2)                    $18 for 65
BUT currently switching to Prevacid to see if I can get relief. Not quite sure the price on that baby, but I'm pretty sure its more.

It's kind of hard to calculate a monthly cost...since who knows how many bottles and packages of tums, pepsid and zantac I go through..and also things like Iron I take depending on my meals and mood. But you can get the idea. Some like Calcium and fish are super cheap, but prenatal and Zantac get costly.

Veinticinco

I know. This blog needs some more color or SOMETHING other than these colorful pills. I'll start brainstorming..... and hey- if your talented and have ideas, I'm open. 

oh meds. Can I just be off the prednisone. It's making me miserable. No sleep. Major heartburn. 

So added to the medication pile is 2 zantac 150's and benadryl. although ben is no pictured. just FYI. Niether are the millions of tums I have gone through. 

It seems I take a zantac around 11, when I can't bare it anymore and it wears off by dinner. until my appointment I was restricted to only 1 zantac150  a day. so I would have to suffer through the nice on tums. and those leave a nasty taste in your mouth, especially when I take them at night and I'm to tired to rinse my mouth after. The whole next day my tongue is tingling and doesn't taste things the same. Anyone else's do that? 

OTHER than the heartburn and no sleep, I'm doing really pretty good. I seem to be able to catch naps to keep me going. And I still feel like I can accomplish more than that first trimester exhaustion. 

Baby Boy 3 is growing nice and big and healthy. I was happily surprised when the nurse said I would be getting a growth ultrasound at this appointment. They hadn't warned me of that before. Don't you love lookin at your baby. 

Everything looks good from the screen and he is measuring a few days ahead of schedule. By my next appointment- where they will do another ultrasound, they expect he should be around 3lbs. double in size. Crazy. I'm starting into the growing big stage. 

As for the lupus- blood draw was eariler this week. I'm hoping for a call today or tomorrow. Praying for good news and release from Prednisone. HA. 

 25 week picture in the mirror.

24 week ultrasound

the bad news and its side effects

What a valentines day this was.

I did get to spend a lovely day with the kids spoiling them with all sorts of love compliments, pink heart pancakes and valentine shirts. But It was quite a stressful day for my brains and insides. There were two reasons really...(one for me and one for my friend but I can only talk about me here)

First thing in the morning my doc's nurse called and informed me that they received my blood scores from the appointment a week before and I was showing low level lupus activity.

I guess low level is better than high level, but I haven't had any level in years. I haven't had a flare or anything since my major flare that got me all diagnosed. So this came as quite a shock. and of course, is quite disturbing.

He put me on 5 little mg of prednisone to see if it will quiet down and in 2 weeks (well in a few days now) I'll get my blood re-drawn. and I so pray my lupus is back where it belongs.

Lots of thoughts in my head... like What if they can't get it under control like last time? Does this mean no more kids for sure. What if they increase the prednisone and I have to stay on it for a LONG time again.(oh my fattness) To me- the two worst things in life is chemo and prednisone. ok, maybe not the worse worse, but pretty darn close.  I hear the word prednisone and automatically want to rebel against it like a 13 year old teenager.

I'm also baffled because I feel pretty good.  But, I guess lupus can be triggered from stress. and I just got home from quite a trip. It was fun but the opposite of relaxing. It was hard work (as I was by myself) and exhausting. In fact I had gotten home that morning at 3am. and woke up at 8 to go to the doctor. On top of that my kids were sick, and I hadn't had sleep in like a week. I felt like crap at the doctor- but exhausted crap not lupus crap..if that makes any sense.

now that it has been a week and a have I have calmed down some... ok a lot. mostly because I feel great. I haven't had joint pain or any other signs of a lupus flare.

The prednisone has made my life complicated though...it is the love of my life- isn't it?
Two of the side effects that has taken hold of me are insomnia and stepping up my already heartburn problem.
between the insomnia, heartburn (and sick kids) I haven't really slept in a week. I have gotten in a few naps.
I had a 24 week appointment and now have meds on top of my meds to deal with the side effects. Quite the pill cot-tail. I'll take a picture of all my pills in the near future

Soon enough I'll be back in for the next blood draw and we will see if the prednisone has worked its wonders. It better has.

Taking one for the Team

Click to read:
I have been quite busy... and I have felt a little bit of a writers block. The things that have come to me to write I have been holding back on because they are toward the end of the chemo experience, but at the same time- there is not much that changed from each chemo treatment. for three years--once a month...weekends, holidays- my life was filled with medication and throwing up. I threw up so much that it was destroying my teeth, my throat, my stomach and sphincter. I was on Prevacid for the acid reflux that occured because my acid was so high and the rest of my sphincther and esophogas wouldn't work properly to keep it all down. (yeah, it still doesn't work the way it should, but it has healed a lot, speaking of which it is what woke me up this morning...couldn't sleep and can't figure out what I ate.)
So beacuse the throwing up was to hard on me and my body (both emotionally and physically) they really started to drug me. I would be out cold. My body became used to this so as soon as we would walk in the hospital. I would smell the smells and feel the familiarity come over me instantly I would yawn. A few times I fell asleep in the waiting room. I was relieved to be in a happier dream world for that 24 hours.
The drugs were nice- however, they didn't make it all go away. I would still throw up a lot, and it really concerned the doctor and my mom. The Chemo wasn't improving my scores but it was taking a toll on me. Each treatment I was a little weaker. Oh...(shutter) I hated it.

I would still be in a lot of pain after- the drugs simply helped me to sleep a little more.
I can't remember what they put me on, there were a couple they would try or switch around from...one was Dexamethasone (if you read down a little bit you will find it's "oncology" uses). These drugs were crazy. They'd make me do crazy things....which brings me to my "title."

My mom.

Man, I really can't even fathom what this must have been like for her. Even now being a mom and having had sick children...my kids haven't been dying or even close. sure maybe a cold that seemed to last forEVER. but that doesn't bring up the kind of emotions that one might feel with a dying child on their hands. I think only few can really ever know what that can feel like. I really hope I never have to know...or any of you for that matter.

My mom would take me to every chemo. She would put up with me being a REALLY onry sassy teenager. I mean I'm at the prime of my sassiness anyway, and on top of it I'm miserable (inside) for being sick and having to endure the next week of my life.

Those rides were hardly fun for her, I'm sure.

Then I would only become more irriated and LESS talkitive than I already was as we got into the hospital.

Sometimes we would watch a movie or a show. She might wander around the floor or hospital, get dinner. It was probably nice to leave me for a while ;)

Then I would start complaining, she would talk with the doctors about my pathetic blood work and me still sick.

Then watch me get a few IV's.

Monitor the nurses. Gotta keep them in line.

Hold my hair, help me pee, hold my hair, help me pee.
TRY to sleep.
hold my hair, help me pee, hold my hair, help me pee.
try to sleep some more.
hold my hair, help me pee, hold my hair, help me pee.

Then wait around all morning and sometimes afternoon...my being "miss delightful."
Talk to the doctors...again about the great scores and what they were going to hit me with next time.

Then drive me home. fun fun fun... haha.
Something though, the things I did on the ride really makes me laugh about some of this, and so sad. (same with my mom...we laugh about it now, but she said she would cry about it, and try to reason with herself that it wasn't me- just the meds)

All the medicine they would put me on would put in in a weird daze for that 24 hours+. I would be asleep and yet fully aware of what was going on. I can remember some things and nothing at all at the same time. SO weird. So, the nausea would still be with me the next few days after chemo and riding home in the car did NOT help with that. So although I would be drunk, I was still awake. 90% of this I don't remember, but some I do.
When driving home I would start to get nauseous and sit up and yell nasty things at my mom. (thats the stuff she would try to say it wasn't me talking it is the meds)

One that I remember so vividly was: I was trying to sleep, but every turn would make me want to vomit. So I sat up and screamed at her "STOP TURNING CORNERS!" and at the same time I came to my senses and realized how stupid I was... she can't stop turning and just go straight, I wanted to get home as bad as she did. hahaHAHA.
ok, It's not that funny, but it cracks me up. I think because- I said it when I was crazy and realized I was crazyright then an there. just call me mental.

Don't worry I have apologized to my mom. and I'm still so sad I treated her like crap. I think she understands a lot though- she is quite the wise woman. I sure love her and really Think the world of her- how could you not after all those years of sticking by my side and sticking up for me...

Chemo

I guess I have kind of had a writers block. After each post I can think of a new thing to write about and will think of ways to write it and those sentences will stick in my head till I sit down and write them. Very unusual for me. If something comes into my head I have to write it down right then or else it is most likely lost.
I think I have had the block more because the next things are the chemo treatments. These are harder for me to write about and describe because they were so physically painful I couldn't even relate it to those around me at the time, let alone now that it is years later and to a bunch of strangers. But I want to describe it so well you can sort of feel the pain and have an understanding. I'm in no way eloquent with words, nor do I have the best vocabulary or grammar...so I feel I don't know where to start. I also only have snip-it of memories, of different chemos, and very tender spiritual moments. how do you put all those into words? I have no idea. It will probably be many posts. but here is the start...so here it goes.

First of all- all chemo's are different and forms of treatment are different. Most people we know go in once a week for a transfusion that will take about an hour. For a day or so they eat soda crackers and sprite. They feel terrible and painful- but a lot of the time can still continue with their jobs and life. Probably at a slower pace.
The Chemo they use in most patients are really advanced-so many people don't even loose their hair. People in our ward or work maybe going through chemo and unless they tell you would never know. I know of three people- like this, one I only found out because her husband outed her in testimony meeting. What a blessing, I think, the Lord has given us this medicine. And although horrific to the person to have cancer and endure that pain it is a blessing that the whole world doesn't have to know their trial by looking at their bald head, or be missing from work a week.

Then there are the "old" chemotherapy treatments, still in use. They are very hard on the body- destroy everything. For me this is what I had to do. Here was my schedule

We would leave early from school on a Friday and head down to Utah, Primary's Children Hospital.
We would check in late afternoon. Yes, like a hotel. here is your reservation and your room number...so many times we had to wait in the room for the ladies to finish cleaning. {??}

I would be pumped full of saline, and quite fast. I would pretty much bloat like a hot air balloon. After about the third chemo I smartened up and stopped wearing my rings. Mainly because the water didn't go away for a week- and the rings would be stuck on my swollen fingers for that long. I like to take them off daily. They were probably all cheap claire ones too- turning my fingers green if wore them in the shower and stuff. This process also gave me a ton of stretch marks. On my thighs, arms, and the inside of my knees. That was really embarassing to me in the following summers when swimming with friends. Even if it was just girls camp. Because I had a LOT of them on my upper thighs. Thankfully a lot of them have faded :)

I had to pumped full of saline, because for the next 2-3 days I needed to be going pee every 2 hours. I needed to get all of these chemicals out of me fast. If they sat in my bladder I would get bladder cancer. So, I would also promise the dr, at the end of every treatment that I would continue to drink drink drink. My mom made sure of that too. water got old fast- anything else I wanted to barf.

so when I had a couple bags or about an hour or two of water in me, they would come in- covered head to toe in drapes. head- hat, body-drape, feet slippers, gloves, and glasses. In one small hand would be a small bag of it.(click on it to see wiki def-) Cytoxan.
for a little 1/2 hour it would pour into my veins, and cause me so much pain for the next week or more.

THEN, for the next 12 hours another chemical called Mesna would drip into my veins. This would bond with the chemo and exit.

The next afternoon I would leave. My mom and the doctor planned it to only take less than a day so that I would be "outpatient" and it would cost a whole lot less. ha-hospitals are so expensive, arent they?

Somethings were the same about the chemo. Arrival, smells- I would always bring my own pillow, cause it smelled like home not sterile. We would bring a lotion and body spray to help with the smells. the treatment, the doctor, the looks of the rooms. you know.
Things like the lotion that I brought were different- I still can hardly stand bath and body works plumeria, juniper breeze, and sparkling green apple. how sick I got. all that kind of stuff. so now that you know how each chemo went, I can delve into the things that were different about each chemo....many to tell, many to tell.

Here is what Wikipedia said about Cytoxan...or part of it. They said it better than me so I pasted it. I've added my own stuff in red.

Side-effects

Many people taking cyclophosphamide do not have serious side effects. Side-effects include chemotherapy-induced nausea and vomiting (CINV), bone marrow suppression, stomach acheyes yes yes..., diarrhea no, darkening of the skin/nails no, although I remember the dr checking everytime, alopecia (hair loss) or thinning of hair you already know- yes., changes in color and texture of the hair, and lethargy. Hemorrhagic cystitis is a frequent complication, but this is prevented by adequate fluid intake and Mesna (sodium 2-mercaptoethane sulfonate). Mesna is a sulfhydryl donor and binds acrolein. ya ya ya ...

Cyclophosphamide is itself carcinogenic, potentially causing transitional cell carcinoma of the bladder as a long-term complicationsee! I already talked about that :) . It can lower the body's ability to fight an infection Doctors didn't want me attending public school- because I could die from a common cold. Talk about a way to scare a girl.. It can cause temporary or (rarely) permanent sterility. Although it is used to treat cancer, it may increase the risk of developing another form of cancer phew- I have two kids..but they did warn me!, sometimes months to years after treatment.

Other (serious) side effects include:

• pink/bloody urine, um don't think so.
  
• unusual decrease in the amount of urine, over time I did have harder time going pee every two hours, although I did have a TON of water in me.
  
• mouth sores, na
  
• unusual tiredness or weakness, ya
  
• joint pain, ya ya
  
• easy bruising/bleeding,man I still bruise like a banana- but back then.
  
• stopping of menstrual periods, na- DANG!
  
• infertility na- YES!
  
• existing wounds that are slow healing. ya.