May 12, 2009 at 6:49 pm (Treatment)
Today, Tuesday May 12th marks the official end of my hepatitis c treatment. The insurance company denied any further treatment.
I feel as if I have had shackles removed from my hands and feet. I will be doing my best to detox over the next 6 weeks or so as these drugs slowly make their exit.
I will write more tomorrow…for now, I am off to enjoy another drug-free evening.
May 8, 2009 at 3:16 pm (New Beginnings, The other side, Treatment)
So much has happened over the past week. Let me summarize.
I am going to take care of myself. I am not going to allow my anger to get the best of me. I am going to allow myself to grieve a bit about my doc letting me down.
I think I may get certified for Reiki II tomorrow if I feel up to it. I am going to squeeze my babies and enjoy my Mother’s Day. I am going to pinch myself and gaze in wonder at the amazing man I married. I am going to live
April 21, 2009 at 5:56 pm (Lab Results, Rescue Drugs, The other side, Treatment)
I was off to see the blood man yesterday. I am so pleased that he has turned out to be such a nice doctor!
My red blood cell counts were tremendously low, and he pretty much insisted that I take a shot of Procrit on the spot. We talked about my experience last month and my concerns about the deep vein thrombosis. He agreed to give me the lowest dose possible on an as per needed basis. He said that to continue to walk around so anemic could cause long term damage to my heart. In the mean time, I will continue to have my labs drawn weekly by his office and I will see him again in May.
I can totally feel a difference in my energy level (and life!) since I have started taking the thyroid medicine. It’s only been 2 weeks – so I am super excited to see what it can do for me when it gets up to its proper level. I have 3 more months of this to get through. Don’t fail me now, Synthroid!
I will be seeing Dr. M next Monday for the first time in six weeks. We need to discuss the myriad of tests that I have been subjected to over the past six weeks. I need a game plan post treatment regarding detoxing from all the meds. I also want to talk to him about potential post treatment side effects. The only information that I have foud on the web regarding post treatment scares the ever loving crap out of me. So…I will ask him about his empirical knowledge. He’s been doing this GI thing for a while now. 
On another note, I took a lovely swan dive off of a foot stool today. My baby girl had a wasp on the ceiling of her room, and I jumped up on her stool (which happens to rock) to kill it. It was an instinctual thing to do. I was dismayed to find myself flying off the stool as it rocked me off. I’m still not sure how I landed, but I kind of feel like I’ve been in a car crash. R was so worried about me and kept saying, “You alright, mamma?” in her sweet voice. I had to just sit there and moan for a few minutes before I could pull myself together and get up off of the floor. And then R said, “bye, bye fly”, and I had to just laugh. Thus concluded my Darwin moment of the day.
I also need to note for posterity that the dose of Procrit seems to have given me a boost of energy. I’m thinking all of the positive things about it that I can.
Onward and forward.
April 12, 2009 at 11:06 am (Family, history)
Tags: Death
My 95 year old Granny died peacefully in her sleep this Friday. Good Friday for her, had she lived long enough to see today. I’m not of the Christian faith, but I did have to smile a bit at her timing.
I am sad to see her pass and I will miss her, but I am also so relieved for her. She has been ready for a long time now. She has been failing rapidly for the past 2 years. And with Parkinson’s stealing her dignity more and more as each year passed, she was so tired and frail.
My Mom called me Friday night, and I knew before the words came out of her mouth that my Granny was gone. And I cried immediately for my Mom and for her siblings…because they are now parentless. And well, that’s just about the saddest thing I can imagine. It’s also so hard to see the last of a generation pass on. Her memories were so faded as she grew older, and I have so many questions that I wish that I could have asked.
We are currently at my in-law’s for the holiday. It’s resplendent with the obligatory eggs, candy, and lovely long family meals. And even though the baby hasn’t had a decent night’s sleep since we’ve been here (and we are all exhausted beyond belief) – it’s been exactly what we all have needed.
I was immediately torn about trying to get myself down South to attend her funeral. My numbers are for crap. My wbc and my neutrophils are even lower than they were last week. I’d have to fly – which entails surrounding myself with the germy masses. And that’s not even taking in account the energy that it would take to get myself organized to actually do it. My mom told me not to come, because it’s doesn’t make any sense to make myself sicker. I have to admit that I am relieved. But I am also sad that I won’t be there to honor her life in person. But I will most certainly be there in spirit.
So my dear granny, who’s twinkling eyes I inherited and passed along to my sweet baby girl.
I will miss you.
I will always remember your crocheted afghans. And especially how the colors got crazier as you got older and your eyes started to go bad.
The astonishing taste of your divinity candy, your pound cakes, and the boiled peanuts that only you could get right.
And I remember as a small child how fascinated I was with your hands. Your fingers in particular amazed me. I would squish the tips of them and watch in amazement as they would slowly reshape themselves. I suppose you were an older woman when I was born, and it seemed natural for your hands to be so wrinkled. I look at my own fingers now, and I can see that they will be just like yours.
I’ve also been told that I’ve inherited your nervous nature; a high strung gene that seems to float ruthlessly about in our family. I’ve tangled and danced with it for all of my life. Thankfully I have modern medicine on my side – so unlike the women of your generation.
I can see now that you fought and suffered with it for most of your life as well. Your hands were always a flutter, and you were known to wring your hands when anxious. My mother has physically grabbed my hands to make me stop doing that very same thing throughout my life. Not another hand wringer!
You sat quietly looking upon the world for the last 25 years of your life. You used to laugh about how you quite literally wore the seat out of your pants from sitting so long. You missed your husband, and this world was just not enough anymore.
And here it was that I always thought your pervasive quiet meant that you were unhappy. Now I wonder if you had just run out of things to say.
I know that you were ready to move on, my Dear One. I hope your passing was as peaceful as possible.
April 6, 2009 at 6:50 pm (Treatment)
Tags: Continuation, Madness, Thyroid, Treatment
Today was hard. My phone rang at 7:15 (never a good time to have the phone ring), and it was my blood doc’s office telling me that my TSH level is high. As in, get thee to your primary care doc (TODAY! they said), and get some drugs pronto!
I went on the damn internet and couldn’t find any decent information because I was so freaked out and brain addled. Turns out the internet is only as good as the user, ha!
And then I lost it. I dropped my basket. I cried. I ranted. I saw colors and stars. And then I quite literally puked. WTF?
My poor children cried to see me in such a state. My poor boy tried to calm me down, but I wasn’t having it.
I was on a tear.I was ready to call Dr. M and tell him that I am done with this crap. I cannot take it anymore! I was ready to throw in the towel.
My boy sent me upstairs to calm down. I was able to call my sister (who is wise about all things thyroid), and she was able to talk me off of the ledge. I got on the phone and made a same day appointment with my primary and tried to sit back and not google anymore.
I have to say that I have not felt right for a while now. Hyper-emotional, sad, blue, and a bit ready to bite a head off if necessary. Looking at my labs today, I can quite literally see when my thyroid took a nose dive. I can also trace my mood alterations to that time frame as well. I haven’t been myself. Literally.
I saw the doctor and she immediately put me on some synthroid. She also ordered an ultrasound of my thyroid gland, just to ensure that I don’t have any nodules. Yet another fun medical test to put on my list this year. Heh.
Even after my positive doctor’s appointment, I still felt quite ready to just quit this nonsense. I cried and cried to my husband tonight about how tired I am. I am so weary, both physically and emotionally.
And then I looked at the circles under his eyes. My dear, sweet boy is exhausted too. My children are most definitely feeling the pinch of my stress as well.
Then he reminded me that this is all for the greater good of our family. And that to throw in the towel now would be incredibly selfish. Oomph.
So….I am going upstairs to take a hot bath and to have a good cry. I sure hope that thyroid drug gets in there and brings my sanity back. I miss me.
April 3, 2009 at 1:34 pm (Treatment)
Tags: Fear
I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.
Frank Herbert
(From DUNE, mantra of the Bene Gesserit Sisterhood).
April 3, 2009 at 12:47 pm (Continuation, Fear, Lab Results, Rescue Drugs, Treatment)
I took my second dose of Procrit a week ago, hoping with all of my might that it would get in there and do its thing. I can’t say that I’ve enjoyed injecting this drug into my beleaguered body. The side effects run through my mind as I push down the plunger and I feel it burn its way through my system. It’s an extremely unpleasant drug to inject!
After last week’s injection of the Procrit; I sat on the sofa, feeling the now familiar exhaustion that it seems to bring (immediately!), and I felt a sense of unease. I try really hard to keep the negative thoughts at bay; but last Friday, I felt a twinge of fear deep in my gut.
Saturday I woke up with the usual aches and pains. So I took the usual drugs to help myself feel better, and I went about my day. Around 1:00 in the afternoon I started to feel this unusual pain in the back of my calf. Not the usual myalgia I’m used to; but something really different. I tried not to panic as thoughts of the possibility of deep vein thrombosis went through my head. There’s this huge warning on the box the drug comes in.
I did some yoga hoping that stretching my legs out would make it go away. It didn’t work. At this point I begin to panic. I called my wonderful mother-in-law, knowing that talking about what was going on logically with her would help me stay grounded. She agreed that it was something to be concerned about. It was decided that I should call my insurance company’s 24 hour nurse, if not just to just alleviate my anxiety. The nurse didn’t really tell me anything that I hadn’t already found on the internet….and I didn’t hang up feeling much better. I put a call into the hematologist on-call number; not sure now if I should get myself into the emergency room.
In the mean time, I pushed tons of water and took an anti-anxiety pill. I continued to just walk about my house, and slowly but surely, the pain started to go away. By the time the doc called, I was feeling a bit silly and histrionic. Had I just psyched myself into experiencing a psychosomatic side effect? The doctor assured me that calling him was the right thing to do. He asked a bunch of questions, and assessed that my potassium was most likely really low, and it was a cramp. Ok. I like that much better than a DVT! Thankfully I had an appointment with the hematologist the next day.
I went in to see him pretty much resolved to discontinue the Procrit. Psychologically alone; it has not been a good thing for me. If I can’t take a drug without worrying constantly about the side effects, then I don’t need to be on it. There have to be other options to help my RBC.
The blood doctor agreed that I should go off of the Procrit immediately. They take deep vein thrombosis seriously! It kills people every day. He gave me a shot of B12 and a script for potassium (which was indeed quite low), and told me to add iron to my regimen. Not sure about taking the iron; I’m waiting to see my GI before I do that.
My neutrophils and my wbc tanked in the two weeks since I had been there. On 3/19, my wbc was 3.4 and my neutrophils were 2.24. On 3/30, my wbc was 2.3 and my neutrophils were 1.31. This is not a good trend, as this seems to be what has been going on since last June or so. He wants to draw labs once a week for the next two weeks, and then I will see him again on the 20th.
And it turns out that this up and down thing is hard on the body. He said that if my wbc and my neutrophils continue to behave this way, that he wants to do a bone marrow biopsy. It’s the only way that he can get a clear picture of how much damage the interferon has done to my marrow. I think that I checked out a bit when he said that. One of those hearing white noise, watching people’s lips move, and not hearing a word that they say moments. Not good.
There is just no way that I will allow them to perform this horrible and painful invasive procedure on me! Especially when we know that its the drugs that are doing this to me. AND, why would we do this now when my body is so tired and immune suppressed? I’d rather quit treatment than put myself through something like that.
And then he informed me that my thyroid has also jumped ship. I’m now in a hyperthyroid state (the skinny, crazy kind) from the Interferon. He took more blood to do an in depth thyroid panel – and if the news is bad, then off to an endocrinologist I go.
Shit. I was already freaked out with the word biopsy floating around the room, but this news broke me a bit. My sister has thyroid disease. I have watched her suffer ALL OF HER LIFE with her thyroid. My grandmother has thyroid disease, and my mother has just been diagnosed with it as well. Yup, my family single handedly keeps the makers of synthroid in business.
I left, trying not to cry in the middle of his office. And then I drove home screaming and crying at the sheer frustration of it all. I try so hard to stay positive. So very hard. But for some reason, on this day, this news was just too much.
I’m weary. My family is weary. And I’m starting to wonder if prolonging my treatment is the right choice.
By the time I got home (and calmed down a bit), I had decided that this is where I draw my line in the sand. If my appointment with the cardiologist went poorly, then I was going to call my GI doc and say this is it. I’m done. No use in killing myself while trying to kill this damn virus.
I had my cardio appointment yesterday and all seems to be well. Of course I won’t know the exact results until the 20th, but the techs both assured me that if there had been an obvious problem, that I would not be allowed to leave their office. Needless to say, I left.
Is it so wrong that I just kind of want to lie down and sleep for a week or so? But no. I can’t. I look at my sweet babies and my beloved boy. And I keep telling myself that I will find that reservoir of strength again. I just need to rest a bit and allow myself to work through these feelings. The silver lining is there. I just need to breathe and look a bit harder.
Tonight I inject shot 53. Wish me luck,eh?
March 22, 2009 at 5:44 pm (Continuation, Family, Fear, Lab Results, Rescue Drugs, Treatment)
The Procrit has made me sooooo sleepy this weekend. And my eyes have been burning like mad, but I’m unsure as to whether or not that’s just not allergies getting to me.
After taking the shot on Friday, along with my usual Interferon, I felt….just weird. My hands and feet tingled a bit and I found myself very aware of my heart beating. I’m not going to deny that I am more than a bit afraid of the cardiovascular uncertainty in my life right now. Friday night found me lying in bed trying to get myself off to sleep, doing a lot of reiki on my heart. I don’t *think* that there is anything going on, but it’s a bit of a Pandora’s box to have it even mentioned as a mere possibility. I am doing my very best to not allow the fear to grip me. I know going down that path will make me more ill, and ultimately is a futile one. However; I do feel the need to acknowledge them.
So. Hello Fear(s). I see you, and I banish you to the land of hope, where you can hang out with some healthier emotions.
Tonight, I am going to do a full body reiki treatment on myself with hopes that I can balance out some of the obvious issues that have arisen. It was so weird last night, I was doing a bit of reiki, and behind my closed eyes all I could envision were these big old fluffy red blood cells. It was interesting, and I just opened myself up to the reiki and its beautiful healing powers.
M and my boy are outside enjoying this gorgeous weather. I just watched as M taught herself to pump her legs to make the swing going higher and higher. She had the biggest old grin on her face. She just came running into the house to inform me of her new accomplishment. Goddess be, how I love that child. She amazes me more each day.
Off to read some bedtime stories. I will do my best to try to stay awake past 8 so that my boy and I actually get some quality time together.
March 20, 2009 at 7:35 pm (Treatment)
I decided to take a bit of a break from my blog. There has been so much going on, and I have been feeling poorly, so sitting down and actually forming my thoughts has seemed a bit daunting.
I went on through the 48 week mark with flying colors. My husband and went out and had a lovely date to celebrate surviving 10 months of this madness together intact. I tried, to the best of my abilities, to truly express how grateful I am to him. It goes beyond words. He is my mate, my best friend, and my personal cheerleader. He is a truly amazing human.
I found myself thanking his mother the other night for raising such a wonderful son. She laughed and agreed that all of her children are pretty fantastic. It’s safe to say that there is a lovely does of nobility in my husband’s blood line.
I dispatched shot number 49 in the usual fashion, not really giving it much of a thought. I woke up the next day feeling like I did around week 5 or so. It’s so odd. I mean, come on body! We’ve been doing this for a while now; and now is not the time to get nervous and jerky. Saturday was rough and Sunday was awful. Meh. I also developed some old side effects (again, what the heck?) as the week progressed. It was a bit nerve wracking to say the least. And I felt a bit deflated after all of my bravado.
So off to the lab I went, curious now about what these pretty poisons have decided to wreck upon my system. I got a call from my doc saying that my numbers had indeed crashed. He was concerned enough to recommend that I rest all weekend and to mask if I had to go out. I wasn’t terribly unhappy about the forced rest part. I felt horrible!
I went to see my doc the next week, and he could tell by looking at me that I was feeling rough. He looked at my labs and promptly recommended that I get myself into a hematologist. He was kind and humble enough to acknowledge that some of the things going on with my labs are beyond his expertise.
And then the Universe pinched me on the rear. Seriously! He recommended the very same doctor that he had sent me to when I first fell ill back in 1996! This doctor had personally informed me that I had hepatitis c via telephone. At the time, it felt like one of the most horrible things anyone had ever done to me. I was traumatized. Upon hearing his name, I was nervous and a bit amused.
Alright Universe. Thank you for giving me the opportunity to seriously heal an old wound that I have been carrying around. Obviously I’m a big girl now and I can handle most medical professionals with dignity. Get behind me, old fear! Heh.
When I got home, I looked up his bio and it was suddenly clear to me. All of those years ago, when his bedside manner was a bit rough, he was a resident. The poor man was probably exhausted! He is now a very well known and respected oncologist in this area.
I spent another week after shot 50 feeling like crap. Seriously, this appointment could not come around fast enough! Despite having the flu the day of my appointment, I dragged my sick self there. Thankfully my husband was able to drive me and help me function.
The doctor could not have been any nicer to me. I was so nervous and unsure of what to expect from the appointment. I have to mention that walking into an oncology clinic is intense on so many levels. Again, it’s full circle from so many years ago when I went to the Cancer Institute, so freaked out by the temerity of it all.
They took a bunch of blood (5 vials!), with one going straight into this amazing and huge machine. Thise machine literally spit out the results of my basic cbc’s, with a diagnosis listed based upon my values! I am in awe of the technology! The anemia seems to be my worse enemy at this point. I knew I was low, but not as low as the results turned out to be. Oddly, my wbc’s had recovered since my last labs – so he wasn’t too concerned.
Before I go into any doctor’s appointment, I always write down my basic medical history, my meds, my other doctors, and then questions. Chemo brain makes things fuzzy – making this a necessity. Before the doctor came in, his assistant came in and took my stats and such. And then he walked off with my list of questions!
The doctor walks in and hands me my list, with all of the answers to my questions literally answered in writing for me. Holy crap! This is the kind of care that every single person in the world should have. He was gentle and respectful of my concerns.
He is concerned about whether or not the long term use of interferon has done any damage to my heart, as this is a known side effect. I also have a family history of carotid stenosis – which is also considered a known side effect of interferon. Eeeep.
So on April 1st (you can quit it anytime now, Universe), I am off to a cardiologist to get an echo cardiogram and a Doppler of my carotid artery done. Whee! I thought the freaky and scary medical tests were going to chill out for a while, but not so much. Actually, I am grateful that he is being so thorough, because who wants a stroke to sneak up on you? Or a heart attack? I refuse to entertain any thoughts of anything being found – I just can’t.
He put me on Procrit so that we can get my hemoglobin levels back up and I can stop feeling like the walking dead. He is concerned about some values in my blood work, and is running more tests on my blood than I have probably ever had run. I see him in 10 days to discuss the findings, and come up with a long term treatment plan.
So doctor blood is going to be following me for the rest of my treatment. It feels like having yet another team member who is at the top of his game.
I just took my first dose of Procrit. It was terrifying giving myself another jab tonight for some reason. The needle was bigger and I had to actually load it into the syringe myself. I’ve become a bit spoiled with the pre-loaded interferon vials. I shook as I pushed in the damn plunger. I reiked the heck out of both meds and just put out a minor request that they be gentle.
I’m off to go kerflump. My children have no mercy. Pretty poisons or not, I will still wake up a mamma and wife tomorrow morning.
Thank goodness.
February 20, 2009 at 8:27 pm (Continuation, Family, Treatment)
I just did my 47th injection. 47!! Next Friday would have been the end of my treatment had I stayed with my old doc. I’m not sad at all. I’m amazed and proud as hell that we have made it this far. Today finds me feeling so much healthier (oddly enough) than I felt 10 months ago. I’m going to list some of my thoughts about my treatment thus far for posterity.
