The Daily Infusion

Seems I'm getting into some sort of once a week blogging groove to mark how many weeks I'm on treatment. So, for those of us counting, it's nine weeks on Tuesday.

Since my home nurse comes every Monday, that serves as a reminder that I've made it through another week of treatment. Interestingly I had a different home care nurse today (Monica is on vacation), and she had quite a bit of experience with Lyme disease patients. During only seven months working as a home care nurse in New York she had SIX chronic Lyme patients on her caseload. Most of them were on Rocephin along with a combination of other medications. This means that all six of them were too sick to go to an infusion center for their port maintenance, just as I am. It's maddening to me that the IDSA (Infectious Disease Society of America) still fails to recognize Chronic Lyme as 'real'.

I started this post a while back in an effort to continue explaining how the port and antibiotic therapy works.

First, we get everything ready: Saline, the antibiotic (Rocephin) and Heparin. Mom and I have our division of labor worked out quite well!

I get an infusion every day around 11 AM.

Here's mom making sure there are no bubbles in the saline syringe.

In the earlier post I showed how the port is accessed at all times. This means that I have a little 'pigtail' hanging from the site with a catheter on it. So the syringes just screw on to the blue piece in the photo above and with a push what is in them goes directly into my system.

The order of administration is SASH: a Saline flush, then the Antibiotic (over a five minute period), another Saline flush, and then a dose of Heparin to help keep the line clear.

Asher, always the helper, supervises everything. We were afraid he would be anxious about the appearance of so much medical 'stuff' like he was in 2005, but so far he's been attentive without being overly anxious.

At the end we have a lot of waste! Ugh.

Hope this helps a little in picturing the medical side of things.

Blessings,

Emily

Photos: The saline, antibiotic, and heparin ready for my infusion; Mom getting the bubbles out of the saline flush (this is usually my job--bubble monitor!); Asher supervising; a mess of medical stuff.

Eight Weeks, Eight Lights

When you receive this blog post Tuesday morning I will have completed 8 weeks of treatment.

Tonight we are halfway through the 8 nights of Hanukkah.

I love the Hanukkah prayers, the Hanukkah Lights special on NPR, my Western Wind Hanukkah CD, my Hanukkah music, and lighting the candles on these dreary, cold winter days. This year, however, I seemed to take special notice of one of the prayers, said only on the first night of Hanukkah:

Blessed are Thou O Lord, our God, Kind of the Universe, who has kept us in life and enabled us to reach this day.

Every morning when I wake up I say the prayer:

I gratefully thank You O Gracious One for restoring my soul to me.

Because even during these really hard days, I do feel this gratitude. I love the quote from my Lyme doctor: "Where there is life, there is hope."

I had a particularly bad day today and it's impossible to know why exactly today was extra bad. After needing to spend the entire day resting, sleeping, surviving I said to Mom: "I'm going to change how I phrase things. Do you know what I did today?"

"What did you do today?" she said.

"I rested and took care of myself. I did what I needed to do for healing."

"Asher, did you hear that?!" she exclaimed. "Did you hear what she said? She rested and took care of herself. Yeah! That is a BIG change." Asher, of course, started jumping up and down like there might be something for him in this all.

Typically I might say, "I did nothing today." or "I was lazy today." or "I didn't get anything done today."

On Sunday Catie came for my weekly bodywork session with her. She had read my previous blog on 'Staying in Touch' brought over a piece of paper with an affirmation for chronic illness, which I have displayed where I view it often: "I am willing to change and grow. I now create a safe, new future."

As hard as this is, as miserable as the days are right now, I feel a hopefulness that this will be worth it. I can only rest in knowing I have made a decision with which I feel at peace, and hope the rest will come out okay. I do feel that during this treatment a lot will change within me--physically, emotionally, and spiritually.

I asked Mom if she had hope this time around that this treatment might work. She gave an affirmative, "Yes."

So it is at this Hanukkah season that I find myself needing the lights on dark nights and the stories of the Jewish people who continue to survive against all odds.

And now, it's time for me to get back to resting and healing.

Happy Hanukkah!

Blessings,

Emily

Photos: Have you noticed the lack of photos lately? It's a sure sign that I'm not feeling well that my camera sits untouched. I took some pictures earlier on in treatment that I have yet to use, so that will help things out a bit!

Staying In Touch While I'm In My Tortoise Shell

I've been desperately struggling with how to address one of my biggest sources of stress these days: how to keep in touch with those I love. The brain fog never lifts long enough anymore for me to truly write blog posts that I think make much sense, so I hope you'll bear with me as I try to communicate with you how much you mean to me! I know I repeat things sometimes when I'm brain-fogged or don't say them quite right, but I really needed to write this to you.

I'm writing this post because it's so important to me to let you know how much I care about you and your lives. I've struggled with finding the 'right' words, but have opted instead to write a vulnerable, heartfelt, authentic, and fairly unedited post.

As most of you know, I'm a people person. I love to have long conversations (email, phone or otherwise) about all sorts of things. Being engaged with others has always been a source of energy for me. I've never been good at having lots of alone time. Now I don't have a choice. I'm too tired and exhausted to do anything but rest.

Yet here I am with this illness that is incredibly isolating and lonely. Since starting the IV antibiotics the struggles with isolation and loneliness have only been intensified.

As the treatment progresses, I continue to have less and less strength and energy. Needing and desperately wanting to reach out to others is trumped every day by the physical demands of treatment. In the coming months (probably 10 more at least!), I know that the demands on my physical body to fight the Lyme will only become greater.

I spend a lot of energy right now worrying and stressing about the fact that I'm not able to keep in touch with folks. How does one deal with having to let go of so much because of the physical demands of treatment? How does one learn to fully receive? How does one let go of guilt and frustration and fear and replace it with only love? How does one stop feeling that being sick is selfish? What's too much to ask of those we love? How long can I keep asking people to stay the course with me?

I know I need to be processing things, talking things through, etc. yet I literally do not have the energy.

What I'm learning a lot about right now is letting go, trusting that people will be there a year from now when the worst of this is over. I'm not very good at these things. I never feel like I'm 'enough' to others, I feel guilty about my illness. I spend way to much time apologizing for not being well enough to keep in touch, help out, or whatever else I perceive those I love need. I apologize to my mom daily for something I feel I guilty about as the result of being sick. Nurturing relationships is one of the things I actually feel like I'm good at and that I can give to this world.

The lessons I'm learning right now are often more challenging than the daily physical demands of treatment. One thing I know for sure is that I am going to emerge from this experience having gone through some serious personal growth! And yes, I see the opportunities and the irony in all of what's going on to challenge me in big ways spiritually!

So for now, one of my biggest lessons is learning to let go and trust in a more complete and vulnerable way than ever before.

Your news and photos from the outside world--in the form of emails, snail mail, texts or FB--often gets me through my days. I get back from another grueling doctor's appointment or wake up from a fitful sleep and find news in my inbox. It pulls me out of my small world of illness into your world. It brings me into your life and keeps me connected to you. Even the shortest little hello can change my perspective on a day.

The time you take to connect with me is such a gift and I don't know how to ever express how much it means to me. I'm writing this post with the intention of letting you know how much your news means to me, not as a way to make you feel pressured or obligated to keep in touch. I just need you to know how much your world matters to me.

Because I can no longer write much in terms of emails, I'm asking you to trust that when I respond to your email with "Thank you!!!!" or "I really appreciate you sharing what's going on with you." (Yes, I want the good and the bad), I'm not being short or dismissive. I'm heartfelt in my response. I'm letting you know I've read your email and it's been received with so much love. I'm letting you know I probably printed it and read it over multiple times (since it's getting so hard to look at the computer screen these days). Hey, I've always wanted to learn brevity--maybe this will be my year. I so admire people who can say one sentence with such POW! they sum everything up! And if you don't get a response it's not in any way a sign that I'm not reading or sending thoughts your way.

I am also genuine in saying that while I cannot offer you long email support when things are tough or you need extra prayers, I want to know what is going on because I want to send love and good thoughts your way. Are you having angioplasty? Are you having a new baby? Are you feeling overwhelmed? Are you buying a new house?

At the end of this year of IVs I'll emerge from my tortoise shell still being a part of your world. I'll know some of your news and I'll have remembered it, even if I couldn't write back.

On my end, I hope so much to be able to continue blogging, but even that has become increasingly difficult. It's not the same as a true conversation in the way I love most, but at least it keeps our worlds connected to some degree. I hope to use it somewhat like a CaringBridges site, so that I can answer your questions and fill you in on what's going on and stay connected as much as possible. When I write my blogs, I often keep in mind the questions you've emailed me like: How long will treatment last? How are you feeling? How will you know it's working? So don't stop asking questions! :)

Over the last few weeks I've thought a lot about how to keep in touch (as in obsessively)--and what would be healthiest for myself and for my friendships. I have decided to get a cell phone that has a keypad for easy texting and add texting to my plan for quick check ins, so if you're a 'texter' this is a great way for me to get news when stuck in bed! The other day a friend sent the heartbeat from the ultrasound of her baby and I just about melted!

I debated getting a phone with email and FB, but then felt overwhelmed at the thought of learning how to work a new device. If a time comes when I'm ready, I might think about something like an iPod Touch which would at least be easy to hold and read emails from anywhere in the house without needing to be at the laptop. Right now though, I'm just not in that place. I'm afraid that I'll check my new gadget obsessively for mail! It's seriously tempting though...

I'm still trying to follow folks on FB as a way to see pictures and news, but may be using that silly "Like" button more than leaving comments. Now, they just need a "Dislike" button. Even keeping up with FB is getting harder though.

For much of the time I've been sick I've been able to keep up appearances, push through the fatigue and the symptoms. These days my body gives me little leeway to do so. And I need to focus my energy on what will hopefully result in significant healing.

While I continue to be at peace with the decision to do this treatment and to forge ahead as aggressively as I can, it doesn't mean it doesn't just plain suck! And not being in touch is one of the hardest things for me. Obviously I knew on some level that I wasn't going to be able to keep in touch with folks, but I was totally unprepared for the emotional angst this would cause me. In some ways I feel like I was more prepared for the physical changes.

Thank you to those of you who over the years, and especially over the past seven weeks, have stayed the course with me, continue to 'get it', and sent me your heartfelt news and emails.

You are in my daily thoughts more than you will ever know. And your news is treasured more than you will ever know. I may not be the best 'pray-er' but I'm great at sending love and energy and good thoughts your way.

Thank you for your continued love and support. And thanks for reading my ramblings!

Blessings,

Emily

The Port

Tuesdays are my day to count how many weeks of treatment I've been on. Today it is seven. I've been grappling with how to blog about this experience and what exactly to write about. Combined with having very little computer time each day, this has made blogging a challenge.

I want to find ways to blog about this experience because is has been so significant--physically, emotionally and spiritually--but most of the time the energy resources aren't there. Plus my brain fog is so bad that I wonder if I will be able to write anything that makes sense!

Today I wanted to share a little bit about the port. When I went in for surgery, I had some idea of what to expect but was not at all prepared for what the port would entail. First, a little 'technical' explanation of what having a port entails and then the 'emotional' side of it.

Above is a picture of a port (from Wikipedia) that gives you some idea of what was inserted under my skin.

The port is located just below my right collar bone in the left cephalic vein. The catheter goes from the left cephalic vein to the left subclavian vein and then to the superior vena cava, giving direct access to the heart.

The surgery itself went very, very well. The surgeon was thrilled (he came out to greet my parents after surgery with a big smile on his face) with the fact that the port had been placed in a smaller vein and that all had gone so smoothly.

Of course, I had asked a lot of questions before surgery about recovery and I was told I would have 'some discomfort' but could resume my normal activities within a couple of days. That was not at all the case! I had a LOT of discomfort and could not move my arm hardly at all! Plus, I had a lot of problems with near-fainting after the surgery.

The port itself is completely under the skin. However, because I am receiving infusions of antibiotics every day, the port has to be accessed at all times. This is different from say chemo, during which a person might go for a treatment and then not have the port accessed again until their next treatment.

Above is a picture of the needle, called a Huber needle that Monica places in my port weekly. It stays there for the week and then needs to be changed. As you can see, there is an external catheter through which we give my infusions. We accessed the port the day after surgery so that we could start the antibiotics.

The type of port is a Bard Mediport. For those who really want to know more about how the port is in the body, how it is accessed, etc. click here.

And here is the picture of the real thing. Me with my port. It's taken me a while to get used to the port. More and more I don't notice it as much, but at first it was a huge emotional shock.

When Monica first pulled the bandage off post-surgery, I almost fainted. I don't know what I had pictured, but when I saw the six stitches I couldn't believe how big the incision was. The port is much easier to look at without the stitches!

At first I kept looking at this foreign object sticking out from my body. I felt sick and overwhelmed by the site of it. I prayed that my body would accept and integrate this new object as part of what I needed for healing.

Thankfully, right now it's winter and no one can really see the accessed port. I'm not sure what I'll do or how I'll feel come summer, but that's too far away to worry about.

For now, I try to view the scar as the mark of a warrior, as part of what makes me who I am, as a marker of my journey. And despite its inconveniences, I'm grateful that my body seems to have accepted the port and we can easily administer the medications I need.

Blessings,

Emily

Photos: Port picture from Wikipedia; Pictures of the Huber needle kit used to access the port; Me with my accessed port.

Squirrel Watching

Those squirrels out there make Mr. Fuzzmadoodle into Mr. Loud Mouth. Oh how he wants to chase them up the tree and 'get 'em'!

They are very busy around our maple tree getting ready for winter. So squirrel watching is definitely one of Asher's favorite activities.

I really enjoy watching them too. I wish I could get a picture of one of the squirrels dangling precariously from a teeny tiny little branch.

Blessings,

Emily

Photo: Squirrel watching.