Update - Week 25

Whew - I've got a few minutes to myself (Kevin and Emma have gone to the Franklinton Fair) AND I'm feeling 'up to it' :) so wanted to pop in for an update ...especially since I've past the HALF WAY mark now. Time to start counting DOWN - whoopee! 23 more weeks and I'm done with this stuff. Disclaimer: Please forgive the brain-foggy/disjointedness of my thoughts and writing. :)

Let's see - since it's been a couple of months, I'll do a quick treatment recap. I started losing my hair around week 18-19 and it's still shedding. Although my hair has always been fine, I had a lot of it. I went in and had it cut very short again last week and they say that I've lost at least 1/2 of it. Thankfully, it's not in clumps but universal thinning so no bald spots. Em is still hoping though, that I'll get to wear her hot pink curly wig - hehehe. Oh, and unlike some who'd reported that their eyelashes got longer in treatment, mine have lost their curl and just poke straight out - very weird - lol. Another surprise is that my pubic hair became straight, too - haha - who knew?!

It's interesting to see how well the body begins to adjust to the myriad of sides. In the first few months, it's sort of alarming to watch your body falling apart :) but after a while, it's like, oh, there's another thing, oh well. Or I guess it's also that we just get so used to experiencing them, that we learn to accept them and live with them.

The old ones that I continue to have are....continuously itchy scalp, skin disturbances (very very, dry skin, rashes, boils, acne, and keratinosis and skin tags and occasional styes); chills, muscle clenching, headache, increased sinus (post jab); joint and bone aches; anemia; anxiety and fatigue.

Still struggling with the anti-depressant though. I think we've all come to the conclusion that I have a very low tolerance for those things. Last month, I'd been having more symptoms of depression, so the dr. said I should increase my dose of prozac from 15mg to 20mg. But when I did it became extremely ototoxic and I was just miserable. Extreme tinnitis, hyperacusia (certain sounds/frequencies are greatly amplified - such as silverware/dishes clanging together when someone unloads the dishwasher (!), a/c vents, sound machine in bedroom, hum of aquarium, movie theatre audio...and also when people spoke, it sounded like they were talking through a long tin tunnel). Apparently the drugs affected the sensory neural mechanism and caused an intolerance to normal sounds. My brain actually 'ached'. So, needless to say, they told me to go back down to 15 mgs and have suggested that I am one of those in the population who are extremely sensitive to certain classes of drugs, ADs being one.

Also still experiencing some tinnitis but the new symptom is that I have developed a very nasty thrush and have had ulcers on my gum and under my tongue for about 3 weeks now. I'm taking nystatin for the thrush - the taste of which makes me gag every time. You have to swishy and swallow instead of spit - 4 times a day - 4 ounces of water mixed w/the teapsoon of nystatin - blech!

The silver lining is that I've now lost 10 lbs but I don't recommend this as a weight loss diet for anyone - lol.

The doctor's office called me late Friday with a report of the lab work on Tuesday. My hemoglobin has dropped to 9.9 so they want me to come in on Monday for a shot of procrit (which Schering is providing). Nice to see that they are staying on top of my labs and I won't have to beg for the rescue drugs. I didn't get the complete lab results - will do that on Monday - but apparently most of the other numbers are staying around the same - lower than the normal range but not in the red zone. Good news! Hopefully, the procrit will help with my fatigue.

Onto more fun stuff going on.... we've been immersed in Ancient Egypt lately. It grew from an interest sparked from one of the magic treehouse books, and we just dove in head first. I found a mummy making kit, hieroglyphics, Egyptian beading kit, and so much more....Em also enjoyed seeing Terry's blog photos of he and Magda's trip there...she thought they were so AWESOME.

We went to the Wild Things festival for a few hours last week and got to hold snakes, turtles, saw a monarch hatching, lots of owls (the live animals were all from a rescue group) and also got to make fly fishing lures.

Oh, I guess the other silver lining is that since I've been dealing with all these mouth and throat issues, I've gotten more audio books for Em and I (since I can't read out loud as often or as long). She's been reading more herself AND I've been actually getting more time to read some of 'my' books.

Reading has always been a very strong passion with me, but since Em's birth I've been reading more children's books and less adult books. My stack of "books to read" has been quietly growing higher and higher for a while now but now I'm beginning to put a small niche in the stack. I finally read Barbara Kingsolver's Poisonwood Bible. OMG - I was moved so deeply by so much in that book. I was immensely affected and it made me want to research and read more about the different countries in Africa. I also have read the first four (starting the 5th) book in the series about the No. 1 Ladies Detective Agency, set it Botswana.....love, love, love them.

The weather is finally beginning to cool off and is so glorious lately. With so many local festivals and fairs this time of year we're out and about several times a week. We're excited about Halloween and have been working on costumes. Emma is going to be a Vampire Witch, I'm going to be a Goth Vampire and Kevin is going to be a skeleton. We're going to a homeschool group Halloween party on Friday night and then we'll go trick or treating on Halloween night. Emma is SO excited :)

Well, I'm getting really tired so need to close for now. Will try to post results from the lab and procrit soon. Definitely will try not to wait so long for my next update. Hoping everyone is doing well out there - keeping you all in my thoughts.

xxx, d