Week #7

May 30, 2008 at 8:49 pm (Lab Results, Treatment)
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One more down! I forgot to pull the damn plunger back to check for blood again tonight. I have a bruise for the first time since I have started this business. I’m not sure what that means. It’s been 2 hours and I feel alright, so I hope it does not affect me. I’m so frustrated with myself for forgetting this step again.

I’m definitely noticing some brain fog as of late. Things like dates, simple math, and remembering things that I need at the store. I find myself staring into space when I walk into the pantry to get something to eat, and it’s not until I’ve sat down again that I remember. Pregnancy hormones did similar things to me, but I was still able to do math! Ah well, at least we know not to put me in charge of any large sums of money for the next year or so. Heh.

I posted another page tonight with my lab results from March to present. I will get my results from today’s draw next week, and I’m really kind of nervous. If you click on the lab results page, you can see that my WBC’s are steadily dropping, and so are my RBC’s. I know this is to be expected, but it is kind of alarming to chart it and see the trends. I am happy to see that my liver enzymes are steadily coming down, thus telling me that my liver is finally getting some relief, and is no longer so inflamed.

I refuse to live by my numbers, though. I am going to go to bed tonight and visualizing my red blood cells full of happy oxygen. And of course my white blood cells rallying as the interferon shot I did tonight creeps into my system. The drugs and I need to have another talk, apparently.

The wedding is tomorrow and I sincerely hope that I feel well enough to celebrate with the bride and groom properly.

Off to bed, tomorrow promises to be a long day.

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Indigo Girls

May 29, 2008 at 12:04 pm (history)
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I’ve been sitting here all morning listening to the Indigo Girls – enjoying Tivo’s Rhapsody Music functionality and listening to many different albums at once. It occurs to me that that if I were to have to pick the soundtrack of my life, their words and wisdom would certainly be my choice.

I’ve gripped their words to my chest and wrapped their voices around me since I was 16 or so. When life was too much and no one could look into my heart and understand my pain, they did. I know this is all so cliche’, but here I am 15 years plus later, and they can still bring a tear to my eye.

I’m happy to say that my children know many of their lyrics too. This past fall when I was in utter discontent, their songs were one of the few things that calmed me. My baby’s first sounds were an echo of their harmonies – with it taking my husband and I a while to figure out where her sounds were coming from.

As I go through this treatment and my soul feels a bit tender, I am as always, turning to them for comfort. I need their words to remind me of the past and of how far I have come. I am so, so far from being that 17 year old pain filled girl. I am content in a way that I could have never have imagined I’d be. I was in the trenches back then, and there was not much that could penetrate my misery. I hear their voices and I am reminded that I am a survivor.

Life is a beautiful gift and it’s lovely to have a touchstone such as them.

My boy just bought me tickets to go see them at Wolftrap in July. It’s my 36th birthday gift. I cannot think of a better way to celebrate my life.

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Week 6, Tuesday

May 27, 2008 at 6:28 pm (Treatment)
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I’m very fatigued today, but other than that, I’m feeling ever so much better than I did over the weekend. I’m a bit nervous about the ‘peak’ time that will hit either tomorrow evening or Thursday. The past few weeks have shown that I tend to get a bit of the flu-like symptoms at these times. This week I plan on anticipating it and taking my tyelnol before they arise.

I’m starting to stress about the state of my household. My laundry is incredibly piled up and everyone’s linens need to be changed. It’s not the end of the world, right? Hopefully my kids won’t remember the year that they had stinky sheets! I’m starting to realize that these are the things that I just have to let go of on some level. However, it’s so frustrating to have finally got my house in order this winter just to have it fall into disarray again.

My big girl M continues to amaze me by how much more mature she is getting every day. Yesterday we were watching a world music program and she turned to me and said, “This is very odd, Mom”. Ha ha! We all laughed at how clever she is and her feelings were hurt. She is such a sensitive child and really hates it if anyone laughs at her. I had to explain to her that we were all laughing in appreciation of her, not at her. The subtleties are difficult to explain to an almost 4 year old, but I think she understood. I am amazed by her intelligence on a daily basis. I am in awe.

And my dear baby girl is as fierce as she can be. She is so intense and also so very different from her sister. I am making a concerted effort to hold her and snuggle her as much as I can, as I know that within the next few months I won’t get a cuddle in edgewise.

She is walking, but with some issues. My toes turned in as a child and I wore heavy corrective shoes for a few years to help them. I’m afraid that my wee one may have the same issue. She seems to turn her right foot in the most, and she kind of lifts her leg at the hip. Kind of like a person with drop foot would. I’m calling her pediatrician tomorrow with hopes of obtaining a referral to a specialist. I’m hoping it’s nothing, but it is something that needs to be looked at.

My dear boy continues to work his ass off for us. He has his days that are hard just like the rest of us, but he gets up and does what he has to do. I cannot imagine going through this married to anyone else – I am sure grateful to have married a good man.

So life continues and every day brings something new, but I am alive and I am surrounded with love.

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Memorial Day

May 26, 2008 at 4:51 pm (Treatment)
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I woke up today feeling so much better than I did for most of the weekend. This is a new pattern with the interferon. I’m not sure if it’s just the cumulative effect of the drug or if my blood levels are starting to do weird stuff. I am noticing that walking up the stairs is starting to wind me, and my calves are burning too. Bah, I hope my body will regulate these things naturally. I really don’t want to have to take the rescue drugs if I can help it. I feel as if I am already putting too many things into my body! I was taking my pills yesterday and I had a moment where I felt so old!

Today is beautiful and it’s officially the start of the summer season. My mother is flying off to Paris for business, leaving us on our own for the week. Plans for M and S’s wedding continue at a breakneck pace, with poor M trying to get it all organized before Saturday. I had to beg off of officiating their ceremony. I just am not confident enough about how I will feel. It’s outside and it’s supposed to be warm and sunny. I don’t deal too well with the heat under normal circumstances. Ahh, the curse of being so pale. Thankfully, S and M completely understand and they had a backup just in case. My big girl is going to be a flower girl and she is so excited!

I have felt so much better today. Tonight I will force myself to do some yoga, it’s been too long what with being sick and all. My back will thank me.

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Surreal

May 25, 2008 at 2:59 pm (Treatment)
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Yesterday, as I pushed the cart through the grocery store, I was struck by how surreal this all is. Everyone around me was doing their thing, and here I am doing my best not to vomit as I wander through the aisles. It’s like walking on your own path in the middle of the road that everyone else is on. Very surreal.

It seems that the full dose of interferon is indeed kicking my ass. I’m fighting with nausea and gastric upset on a daily basis. It sucks, but it’s manageable. I’m drinking a bunch of ginger ale and taking my ginger when it gets really bad.

But on Friday I developed a new side effect – really painful mouth ulcers. This by far has been one of the more painful side effects. My upper and lower lips are ulcerated too – so eating has become even worse. My pharmacist told me that he could make up what’s known as magic mouthwash for me, so I need to call my doc tomorrow and get a script. I hope it helps!

My mom’s visit has been lovely and the girls have truly enjoyed being around her. She can see that being a mamma right now is really hard for me. I can tell that she too is worried about how we are going to do this for a year.

We will survive one way or another. This is what we do.

One more week down. Goodbye week #6.

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Alive!

May 22, 2008 at 8:34 am (Treatment)
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This week has been one of staying still and allowing my body to heal from what now appears to have indeed been a stomach virus. I can honestly say that yesterday (a week after it hit me) was the first day that I felt well gastro-wise.

I am trying to eat every few hours, even though food officially tastes like sand. Seriously, I have absolutely no desire to eat. My mom will get here later this afternoon, and her main goal for her trip seems to be to feed me. I am trying to imagine what I will want her to make for me, and I am at a loss. I am afraid to get on a scale, I think I have lost at least 10 pounds in the past 6 weeks. Which does not sound like a lot, but on my frame, it’s obvious. I go for a weigh in mid-June, it should be interesting to see if I can pack try to pack some more pounds on before then.

I will be giving myself my 6th shot tomorrow night! Oddly enough, the injection site from last week is not even noticeable like the ones on my thighs are. You can still see the spot from my very first shot on my left thigh! I will be calling for my lab results in about an hour or so. I’m interested to see how my hemoglobin is doing.

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Good Day, Sunshine

May 19, 2008 at 8:46 am (Treatment)
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It’s beautiful outside today! I fully intend on getting out to the grocery store and then spending some time with the babes outside.

I feel good today, albeit a bit tired. I am going to have to just get used to being fatigued, I suppose. I’m going to buy some Carnation Instant Breakfast today, and possibly some Boost as well, with hopes that I can start getting some calories in me.

My boy looked at me last night and remarked that I’ve truly dropped all of the baby weight, and I guess it’s true. I do not own a scale, so who knows what I weigh now? I do know that my clothes are baggy, and I’m starting to look a bit schlumpy. I am impatient for it to be warm enough so that I can wear my skirts and tank tops and all of my other warm weather clothes. The good thing about them is that most of them look decent even if there is about a 15 pound weight difference in either direction. Yay for postpartum clothing shopping from last year!

My mom is due for a visit this Thursday. I am both excited and anxious. A visit from a parent always entails making sure the house is presentable, and I am going to have to pull upon some deep resources of strength to get my house up to snuff. My dear neighbor has offered to come over to help me pick up, and I fully intend on taking her up on the offer.

This week will most likely be a busy one, and I imagine that it will fly by. I will be excited to be able to say that my 6th shot is down and out of the way by the end of the week. Every week brings me closer to success. It’s funny that my 3 month PCR appointment is the day before my 36th birthday. I fully intend on receiving the best birthday gift of my life. Onward and forward.

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Rainy Sunday

May 18, 2008 at 1:04 pm (Treatment)
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Today finds me in much better shape than yesterday. I’m very fatigued, but my stomach has finally decided to quit fighting the power. Thank goodness! I’ll be interested to see how my labs come back this week, as I am feeling more and more anemic as the days pass.

It’s another gray, dreary day here and I am finding that my mood is the same. I did just look at a calendar, and I realized that hormones are definitely going to be kicking me around this week. Gah!

Before treatment I was struggling with postpartum depression, and the pre-menstrual time was already very difficult to manage. It seems like it is going to be intensified by the treatment. Really not what my poor psyche needs. But, I am aware, so I can watch and treat whatever may pop up. Can I get a woo hoo for available benzos and my beloved Wellbutrin?

The other morning I quite literally felt my Wellbutrin kick in. I was sick and feeling a bit down, and I could honestly feel my brain right itself as the morning progressed. This just makes me even happier that I am on an antidepressant as I go through treatment. I remember very well what it felt like last time when I was treated and I was un-medicated. It was pure hell.

I’ve been thinking about how vulnerable this treatment has left me feeling. I’ve been a housewife for many years now, so I already knew what it feels to be dependent upon my boy. This is different. And much more scary.

I get really scared and nervous when my husband expresses tiredness, frustration….or when he, you know, acts human. It’s silly, because obviously he is allowed to feel what he feels. This is hard! But this past week has been especially difficult for all of us with my being so ill. He is trying to juggle a 60 hour a week job, 2 children, 2 dogs, 2 cats, and oh yeah, 3 chickens. And a sick wife. His shoulders are strong, but he is a bit weary right now.

I struggle with tying not to feel like a burden. I do believe that this will be the biggest challenge for me emotionally over the next few months. Again, I am aware, and I can walk into my next therapy appointment and delve into this.

I really wanted to post a happy post. So I will close with this. I am happy to be alive. I am grateful for my family. And I believe in my ability to heal myself.

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Woe

May 17, 2008 at 2:14 pm (Treatment)
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I just wish that my stomach would stop feeling as if it would like to consume itself. I got up this morning feeling a bit better. I managed to eat two bowls of cereal this morning (I would regret this later) so that I could get myself off to get my labs done. I had a few other errands that I needed to do as well.

I felt woozy and my stomach hurt as the tech took 3 vials of blood from me. The poor guy felt bad for me as I turned green and then pale and sweaty before his eyes. He offered me some juice, but the thought of anything acidic in my belly was not pleasant. I went directly to the health food store and bought some Solaray ginger tips, hoping that they will help with my nausea and stomach upset.

Then I managed to vomit at the grocery store. As I walked in, the smells overwhelmed me and my breakfast was no more. Thankfully, I was close to the bathroom, so I didn’t do so in public. It’s kind of ironic, because when I was first pregnant with R, they knew me at this grocery store. The very same thing happened there more than once. I used to joke that I was vomiting my way through town when I was pregnant with R.

At this point, I just don’t know what I’m going to do about my stomach pain. So I stopped in and spoke with my pharmacist about it, and he recommended good old fashioned alka-seltzer. He also took the time to make sure that it would not interact with my treatment meds. He expressed some kind concern about my weight loss, and it was all I could do not to cry in the middle of his store! He gave me some suggestions and offered to obtain some supplemental drinks for me at cost, if I need them. He is a kind, kind man who runs this amazing little pharmacy that is located right next to one of the big old corporate ones. He stays in business because he carries things that most pharmacies couldn’t be bothered with, and he takes time to speak to you as a person. He hugged me today, and it was not strange at all to have him do so. I’m so happy to have him on my side.

I tried eating some ramen noodles (comfort food), and they just burned their way through my gut. I finally remembered the ginger tips and I chewed on one of those, and my belly relaxed for a few minutes. I’m eating saltines and drinking ginger ale.

This is starting to wear me down, and I am finding myself to be a bit weepy with frustration off and on today. I am paying close attention to my mood, but at the same time, I know that this is hard stuff. I have every reason in the world to cry right now. I need to allow myself a good cry tonight, I think.

C and M are off at a birthday party of a dear one, so it’s just the baby and I fending for ourselves. She is such a cuddle girl – she has not wanted to leave my lap all afternoon, and is yelling at me to be let back up as I type this.

I’m done with my woe is me post.

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5 Down

May 16, 2008 at 6:28 pm (Treatment)
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After posting about feeling better earlier today, I promptly felt just as ill again. I’ve got to stop tempting the hubris gods, I’m getting my butt kicked all over the place here. I cannot seem to keep much food in my stomach, and when I do eat, it literally churns and I can feel my body trying to digest the food. It’s terrible.

As the day progressed, I began to wonder if I should do my shot tonight. I couldn’t really find any info online, and my doctor’s office did not return my call because it was super late by the time I left the message. I decided to take advantage of the assist line that the drug company has, and paged one of their nurses. I received a call back within 5 minutes of the page! She was very kind and informed me that under no circumstance, other than doctor’s orders, should I not do my injection. She did say that all of these things I’ve got going on could be interferon side effects too. It’s hard to tell. I seriously hope this has been a flu – the thought of having this kind of intestinal and nausea issues weekly completely overwhelms me.

Parenting solo (due to my boy having a meeting in the city) was really hard today. I broke down in tears at one point, wondering how in the hell am I going to be an effective parent if I get sicker? But…this is going down the ‘what if’ road, and I’ve got to quit it.

I just did my shot. I decided to inject in the abdomen for the first time; I cannot say that I liked it very much. The thighs just seem sturdier somehow. I wanted to give them a break, as I have 4 nice red and/or funky spots on them. The abdomen shot was just weird. Ah well, I guess I will get used to over time.

I’m hoping that my interferon shot will actually make me feel better. It is an anti-viral, after all.

Off to nurse my poor stomach with some saltines and jello.

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