Thursday, September 30, 2010

Tomorrow it is...chemo day at last

I've decided tomorrow will be the day I take my chemotherapy drugs for the first time. I only have to take it 1 day a week, but since I don't know how much it will affect my body, I want to make sure I take it when I don't have to worry about being sick at work or anything else. I've decided Friday night will be the best time.

Annyka will be at her father's; Saturday we are going to my pseudo-daughter (that's a not-quite-stepdaughter) cheerleading competition, but it's near my parents' house so I can always go there if I need to rest. I don't want to take any chances and be sick on Monday or Tuesday for the big training at work that I have been spending way too much time and manpower on.

The detox is nearly done. Only three more days. It wasn't really all that challenging for me. I didn't eat fast food (except for a couple subs at catered events); I had no caffeine or alcohol. Plenty of veggies, more fruit than normal for me, whole-grains and a lot of food from Trader Joe's! I'd probably feel better if I went suffering from congestion in my chest. I kind of fell off the exercise wagon a little bit this week with all the extra work I've been doing. I've only done the Shred once this week and couch to 5K twice, but I think the week will close out okay.

Wish me health.

Monday, September 27, 2010

Blessed? Lucky? All of the above?

I sadly realized this morning that haircuts and basic grooming is a luxury to some people. Of course I realized there are homeless people who don't get showers often, etc, but I never really considered that kids my daughter goes to school with may not be able to have those things. I am heartbroken. I manage well on my small income and it hurts to know how much worse off many people are regardless of how hard they try.

Thursday, September 23, 2010

There it is

So those detox side effects finally hit me. NOW I'm getting the nausea and fatigue I was expecting earlier in the week. Thankfully no headaches.

I finally received my methotrexate in the mail yesterday (12 days after mailing it). I read through the side effects sheet - I always do that. Am I the only one who reads those things? Anyway, nausea and vomiting are at the top of the list. Yay! And hidden somewhere down below is "temporary hair loss." But the good news is the hair will grow back when I'm off the drug...which is...never? Scott was nice enough to say he thinks I would be "sexy" bald, but I'm pretty sure he was kidding.

I still haven't decided if I will start the metho (I would abbreviate it to meth, but that's a whole 'other drug!) this weekend or next. Pros for this weekend: it's NOT Scott's birthday so if I end up sick all weekend, I'm not ruining anything. I was sick last year on his birthday following a different, unrelated medical procedure. And I currently am having a flareup on the right side, so maybe it would stop that before it becomes infected. Pros for next weekend: I will be almost done with the detox so I wouldn't be screwing that hard work up. Annyka will be at her dad's so I don't have to worry about taking care of her while adjusting to the med.

Obviously I'll decide something in the next 48 hours or so, but in the meantime, I started having dreams about being sick from chemotherapy last night. I think I was a bit nauseous overnight as well which wasn't helping. I woke up a bit distressed. I feel like a walking zombie this morning since I woke up to a hysterical 5yo freaking out about there being no waffles or something. Then I forgot to make my mini bagel and PB for breakfast so I may or may not last until lunchtime.

Wednesday, September 22, 2010

Cleaning out the ol' liver

I started a detox "protocol" recommended by my chiropractor this week. It's not been all that difficult and I've having few side effects - you would think I would be happy about that. But it's kind of like pregnancy - if there's no morning sickness is it really happening? Some of the side effects she warned me about were headaches, nausea, fatigue, excessive sweating. Yeah, I'm a little tired, but a) that's my norm and b) I seem to be having a parotitis flare-up on the right side right now so that could also be causing that. PLUS I did start working out about 10 days ago too so of course I might be a little more exhausted than normal.

Or maybe it just means that I'm not as toxic as some (I doubt that with all the crap food I ate over the summer). I am doing well with this week's non-crap food though. My diet has largely been from Trader Joe's. Fruit about 3x a day (that's a lot of fruit for a veggie lover like me); eating every 3ish hours. I tried steelcut oatmeal this morning with blueberries. It was edible. Lunch is sliced chicken on a whole wheat mini bagel with homemade guac. Tonight looks like it'll be veggie and black bean quesadilla - light on the "quesa" part for me.

In related news, the methotrexate should arrive this week. I haven't decided if I will take it this coming weekend or wait until next weekend after the detox is over. We don't have any plans this weekend so that may be a good time for me to be exhausted in bed from the meds and next weekend is Scott's birthday, but I don't really want to screw up the detox. I'll think on it for a bit.

Friday, September 17, 2010

Once upon time, Annyka Rae was born.

Although I know this story like the back of my hand, I can't guarantee some of the details might get a little fuzzy, so I decided it might not be a bad idea to keep somewhere where I can access it when needed:

I got pregnant in late September of 2004. The second week of October I was insanely tired (to the point of napping for FIVE hours in the backseat of a vehicle one evening while Jason played softball) and I missed my period on a Monday. I waited until Thursday night to take a home-pregnancy test, already being pretty positive of the results, but seeing the test definitely made it more real. I took Friday off and took my parents to lunch to tell them.

I had very little morning sickness in my first trimester. I only remember one day that I didn't feel well - it reminded me of the nausea of a hangover. However, at 13 weeks on the dot (the week of Christmas), I had a really bad bout of acid reflux one morning and about 4-5 mornings a week I would throw up from that point on - not nauseous, just a gag reflux that made me puke up bile every day. I honestly preferred that though to nausea and/or unpredictable vomit
I craved citrus fruits and juices (weird because those NORMALLY cause my acid reflux, but not in pregnancy), salads, baked potatoes and pineapple juice. I would go from zero to starving to death in about thirty seconds but could often not finish a meal because I would get full so quickly. I think I got full quickly because Annyka was really high in my abdomen. I could wear some of my regular jeans because my belly was all above the waistline of them. At last weigh-in, I had only gained 13 lbs.
I continued working out during most of my pregnancy too. I didn't run, but I did walk on the treadmill, lift lightweights and do core workouts with the swiss ball. The walking seemed to reduce swelling in my feet and ankles. 
I did have to go to L&D twice during my pregancy for unexpected bleeding, however both times it was determined that it was just a spot on my cervix that is easily irritated, not uterine or placental. I still spent several weeks of my pregnancy on pelvic rest though. The real problems were just getting started.
Around 20 weeks my blood pressure had started to rise slightly, but not alarmingly so my doctor started seeing me every 2 weeks. I went in for my routine 32 week appointment on a Friday afternoon - April 29 (my due date was June 20).
The nurse took my BP and asked if anything was going on in my life that may cause elevated BP. I had gotten a new boss at work and she was a bit of a micromanager, so I mentioned that. That week I had had a lot of trouble sleeping because of some pain under my ribs. Honestly it was the first time in my entire pregnancy that I had really started to feel annoyed with the whole thing. After all the necessary checks were done, Dr. Moon said “I am sending you directly to Labor & Delivery.” That was the first clue I had that anything was actually wrong. The signs I had been told to look for (ie read about) like headaches, swelling, blurred vision, were not syptoms I had, but my urine proteins were elevated and my BP was pretty high (she never actually told me what it was). Plus the pain I was feeling under my ribs was not Annyka’s little feet jamming into my ribs, it was my distended liver.
I spent the next 24 hours at St. Vincent’s doing a 24-hour urine test, non-stress tests (NST) and getting steroid shots for lung development. I was released on Saturday afternoon (after missing what would have been my baby shower) and put on strict bedrest with another appointment with Dr. Moon on Monday morning. Monday brought another NST and various other tests I don’t remember. The urine tests from Saturday put me in the “severe preeclampsia” range.
Unfortunately I only made about 10 more hours on bedrest. By evening, I was back in L&D to stay. I know they had me pee into the hat for awhile to check my protein. I remember my white count was high so they put me on an antibiotic. I remember that I was on magnesium sulfate and it didn’t make me nauseous but they still wouldn’t let me eat. But I think there’s also a lot I don’t remember. I was sent to have blood taken and an ultrasound done last on Tuesday morning.The baby's weight was estimated at 3 lbs 13 oz.
At 2 pm on Tuesday my blood results were back and Dr. Moon arrived in time to tell me that we were going to a C-section as soon as possible. She said my platelet count was so low that she wished she could retest it to rule out an error, but if it was correct, my risk of hemorrhage was so high that we had to go into surgery ASAP. Doctors and nurses from anesthesiology, the NICU and who knows what other departments came in to talk to me to tell me what to expect and I was taken for my spinal block.
I had no complications in surgery, except for some vomiting. I don’t remember Annyka making any noise when she was born at about 2:51 pm at 4lbs 2oz, 17 inches long (33 weeks gestation), but I do remember crying and asking if she was okay. She was, but seemed to have some fluid in her lungs so she was rushed to NICU. She was put on a CPAP for the first 12 hours of her life. She was given her first bath in the NICU and the nurses were kind enough to take some pictures of her on her birthday NOT hooked up to the monitors and machines (which I really appreciate). I met my daughter in the isolet that evening, but unfortunately due to all the drugs I was on (primarily morphine) I do not remember it. THAT breaks my heart. She spent 15 days in the NICU, a period of time in which I became incredibly grateful for NICU nurses!
Annyka’s breathing stabilized and the CPAP was removed, but her bilirubin levels were high so she was under a bili-light for a couple days. She also couldn’t maintain her body temperature well. My milk came in with a vengeance within 24 hours and I was able to pump colostrum and milk for them to put in the feeding tube she was on for the first 4 days. Unfortunately my body was struggling. I had very bad bruising from the surgery because of my platelet level, I wasn’t adjusting well to being off the catheter and my blood pressure was not dropping. I ended up staying in the hospital for 5 more days (released on Mothers Day!). Annyka was in the NICU for 15 days for her body to figure out how to maintain temperature and to make sure she was gaining weight.
She is now a completely normal almost 5-year-old in the middle of the growth charts. She had no additional complications after being released from the NICU (unfortunately I had a few more problems). I am eternally grateful for both the doctors and nurses who treated me AND those that treated Annyka during a really tough two weeks of our lives.


I'm not delusional enough to think I could continue this pace, nor is it my goal, but I am happy to see the scale reading 6 pounds less than last Friday. So it's not all for naught. This weekend might be tough, but I'm going to give myself a little break and have at least one beloved Woodchuck.

Wednesday, September 15, 2010

Still pushing forward

So far it has been a good week. I feel like I am making some progress emotionally and physically. I'm getting active again. I've stayed on track doing Jillian Michael's 30-day shred each day and also following the Couch to 5K program.
I've reduced the amount of foods I'm eating and I'm trying to eat balanced mini meals every 2-3 hours. I'm not getting hungry even though I'm eating significantly less. It takes a lot of planning but I use SparkPeople to help me out.
I also went to the chiropractor today. My upper cervicals were a hot mess and had a lovely out-of-whack spot in the middle of my back as well. Hopefully the headaches will start to subside now. And lastly, next week I will be starting a detox program to try to clean out the old liver before I start on the chemo drugs. Although I am a little frightened of the methotrexate, I've decided to try using it and see how it goes. But I want to try to avoid toxicity if at all possible (obviously).
In addition, I'm looking into some additional vitamin supplements to keep my immune system up and combat the fatigue. I'm also considering making some changes to my allergy meds, but I'm going to wait until after the fall allergy season is over before doing that.

Saturday, September 11, 2010

Forming a plan...

I've worked up a general plan of how to get back into the game that I consider MY life. I'm going to start I've never worked out before (because honestly, sometimes I feel that way despite the fact that the mini marathon was just 4 months ago).

That includes two things: 1) using the couch to 5k program starting at week 1; and 2) starting the Jillian Michaels (I hate that woman) 30-day shred at level 1 (again).

Plus I'm going to start working on diet. First step will be reducing portions, but eating more often - every three hours. Then next month I'm going to work on adding more veggies, fruits and whole grains and start phasing out the processed foods - FOR THE WHOLE FAMILY.

I started today.

Thursday, September 9, 2010

Where to go from here? Part 2

So here it is - part two. This is the part where I talk about how I feel…more emotional than physical. Physically, right now, I’m just more tired than normal, but otherwise mostly okay. But emotionally, I’m kind of starting to feel like a wreck, and I may be making it worse by keeping a lot of that in to spare the other people in my life.

I am relieved to find out SOMETHING is going on and know now WHAT that something is. I tried to tell my general practitioner back in April that I felt “off.” That I thought my thyroid or something was acting up because I didn’t feel normal. My appetite was out of whack and I just didn’t feel right. I know that’s kind of vague, but it’s the best I can do. He said I hadn’t gained weight in the past 6 months so he didn’t see any reason to do any tests. (I, frankly, expected more from a doctor of osteopathy.) So then in June all hell breaks loose and finally someone starts to listen and pay attention to my concerns. But for the past 3 months I’ve felt like I’m just treading water, waiting to find out something for sure and now I have. But in those months since April, I’ve gained about 20 pounds, and in the last 16 months, I’ve gained almost 50 pounds. THAT is NOT normal for me. Granted I don’t lose weight very easily, but I don’t tend to gain it all that quickly either. I’m angry at myself for being weak and allowing this to happen. I’m angry at my GP for not listening to me and I wonder if I could have prevented some of this. I’m scared that I won’t be able to fix this and that I am destined to be this obese for the rest of my life. And I’m embarrassed by myself. I haven’t been this down about my body … well, maybe ever. And I’m trying so hard to push it down and be in denial that I’m only making things worse.

BUT with the results of my blood tests, my thyroid is a little bit off even with the Synthroid that I am currently on. So maybe if my GP will tweak my prescription a bit, it will help me lose a little weight. But what about the rest though? Some of my weight gain can be attributed to medical issues, but a lot of it is also the mental challenges that have come with that. I would like to think of myself as strong, but I wasn’t strong enough for this.

So I’ll have my thyroid meds changed. But that’s not all. Next up is the prescription for methotrexate that I have in my purse. Methotrexate is basically a chemotherapy drug. However, in my case, I won’t be having it injected directly into my veins; I’ll be taking it once a week in pill form. The reason the salivary gland infections keep coming back is because I have chronic inflammation in those glands so they cannot drain properly. Steroids this summer finally got me back to normal for a while, but that is only a temporary fix. The methotrexate will help combat the problem, but it can also cause some toxicity buildup in my liver and/or kidneys (which thankfully are fine right now). The fact that it is used to terminate pregnancies scares me as well (not that I have any plans of being pregnant). Maybe now is the time to consider a more permanent form of birth control though…?

I also need to consider the possibility of medications to manage the dry eyes, mouth, nose, etc caused by Sjogrens. Right now I take allergy medication daily to control the crazy sneezing and eye irritation I would get at work if I didn’t take it. BUT that medication is also drying me out. So it’s this very unstable balancing act of which one is more important and when the importance of these medical priorities shift.

I hate to change my diet and exercise habits drastically while I’m also making chemical changes to my body because it becomes hard to figure out to what I can attribute any reactions in my body… or is it better to change everything at once so the transition isn’t drug out over a long period of time? How do I find a new balance with everything? And with these new challenges should I increase my antidepressant dosage as well? And are there other treatment options? Alternative medicine? Can my chiropractor help? How do I change my diet and get back into my running groove (which I am VERY out of right now)? And how do I do all that and be a mom to my 5-yr-old as she evolves into a responsible student in kindergarten? And be a good girlfriend? And not put the job that I love (most of the time) in jeopardy. It’s a lot to consider and seeing it as a whole has me feeling very anxious right now. I’m just not sure yet how to break it down.

A diagnosis - Part 1

Boring name for a blog, but for the first time in quite a while, I'm feeling the need to write a bit. I have a lot of anxiety and messy stuff bumping around in my brain and the best way for me to straighten it all out is to write it out and hope it starts to make sense (to ME).

So we'll start at the beginning - explaining how I got to where I am today. Part 2 will be the anxious part.

Not too long after Annyka was born, in November of 2005, I started getting some swelling in my neck, below the ear and behind my jaw. I don't remember which side of my face it was on, but it doesn't really matter. It progressively got worse over a few weeks, but I had also been having some severe allergies and inner ear fluid causing vertigo, so I was assuming that it was all related and that the meds my doc had already prescribed would help. The Sunday after Thanksgiving I could barely eat due to the swelling and pain and my body was feeling achy and exhausted with infection so I went to the doctor. Antibiotics were prescribed. They didn't help. More antibiotics were prescribed. Still little change. The infection would clear up, but the swollen gland didn't get better. Eventually with the help of acupuncture, TENS electric pulse therapy and A LOT of warm compresses and massage the area drained and went down.

Over the last five years, when I get a sinus infections I would likely get infection and swelling in one or both of my largest salivary glands - the parotid glands. I would put off going on antibiotics as long as possible since they never seemed to help and I also started avoiding going to the doctor since it seemed pointless.

However, in June of this year, I woke up on a Sunday morning at 4 am with a raging infection. Fever, aches, very painful parotitis and general crappy feelings. Since this was the third or fourth time with parotitis in the past 6 months, I had reached a threshold. I was self-referring myself to an ENT. I fully expected to hear that I would have to have my tonsils or adenoids or something like that removed. I did not expect what she said instead...

She asked if I had dry eyes. Well, yeah I do. I deal with it just like everything else, but yeah, I've had problems with my eyes for about 10 years. Then she asked if I'd heard of Sjogrens Syndrome. I hadn't. She was surprised no other doctors had mentioned it. That is one of the most common causes of the swollen parotid glands. So I had some tests: a few blood tests, a CT scan and fine needle biopsy. The CT scan showed some abnormalities, but the biopsy came back with good results. The blood tests surprised me the most. My ANA number was off the charts - this means I have antibodies in my blood that indicate an autoimmune disorder. So off to another specialist I go.

I researched rheumatologist and found one that I was comfortable with - AND could fit me in in a reasonable time period. I had A LOT more blood tests (14 vials and several thousand dollars worth). And the results came back yesterday - it IS Sjogren's Syndrome and now I move forward with treatment.

The good news is that the thyroid issues, the weird vasculitis in my legs and feet (hard to describe, easier if you can see it, but basically my blood vessels swell and you can see blood under the surface of my skin as petechiae or purpura), the dry eyes, the recurring parotitis and the exhaustion have an explanation...the hard part is making some treatment decisions and reversing some of the damage that has been done over the past year. And that is where the anxiety comes in.

To be continued.