Lyme Log: Port Insertion

Admittedly my posts lately have been a LOT of medical stuff. The reality right now is that my life of late has been revolving around coordinating the next step in treatment as well as going for my Rocephin injections daily. Not much energy is left for anything else, except a little fluffy TV! By Tuesday I had reached my tolerance level for stress and feeling overwhelmed.

I think this morning I finally got most things in place for the surgery, home care nursing, and other such details. I've been to the surgeon's office, talked to him on the phone, had pre-op, talked to the home nursing supply company, etc.

While I was at pre-op yesterday I ran into both my cardiologist and GI doc, both of whom also stopped to chat and check in on things! When my GI doc saw me in The Rolls, he immediately squatted down so that he could talk to me at eye level. I'm still moved by this moment every time I think about it. I've only seen my cardiologist once yet he remembered me and the problems I'd had with my cholesterol meds so far.

These little moments remind me that I've finally assembled a team of doctors who take me seriously. I'm no longer the crazy lady who's making everything up.

The port (a Bard Medi-Port, for those of you who are into these kinds of things!) will be inserted on Monday morning, October 19th. It's a same day surgery that should last about 30 to 45 minutes.

I'm scheduled for the first surgery (arrival at 6 am, surgery at 7:20 am), so this should bode well for me in so many respects. I am also having the same surgeon who removed my gallbladder so I feel very comfortable with his knowledge of my underlying conditions, as well as his competency as as surgeon. (Never have I heard a negative word about this man in all his years here.)

So, only two more shots in the toosh left! I think pretty soon one could play connect the dots if we don't start doing the antibiotics via IV.

I've been alternating between moments of calm and moments of panic over getting everything organized to get the port in place, and just being anxious about the surgery itself. My anxiety meter has been very high the last few days. Guess I need to play that guided imagery CD on successful surgery a wee bit more!

I know that so much of the anxiety comes from past experience with the GB surgery. Much of the rest comes from the leap I'm taking in treatment. Right now, I could stop the shots at any time. Once I get the port in, it says: "I'm really doing this."

Interestingly, today when I called the home nursing folks to check on a few things, including making sure the Rocephin will actually be covered the woman checked my diagnosis code and immediately said: "Oh yes, you have Lyme disease. We deal with this all of the time." As Jeannine later noted, it's almost as if the disease is this underground illness--some doctors are treating it, but afraid to talk about it because it's so controversial.

That's the scoop as of now.

I'll try to blog about something non-medical soon. Over the weekend we did sandwich a birthday celebration and a park outing in between the craziness of Friday and Monday.

Blessings,

Emily

Photo: So I took this photo of the hospital on July 4th as we could see it from where we were seated. This is where I'll be Monday.

Every Morning You Greet Me...

Anna checks me in with a smile.

No, it's not Edelweiss that greets me every morning, but here are the folks who do...

I have spent so much time at the local PCPs office over the past seven years, that I certainly get to know all of the folks there well. Here are the faces that greet me every day when I go in for my shot. It's truly amazing how much a part of our lives our medical team becomes when we deal with chronic illness. And all of the folks who help out from the nurses to pharmacists to check-in and check-out make such a big difference in our life experience.

Today when I went for my shot I took a picture of the four folks I've been seeing every day for the last few weeks (and a lot over the past few years!). They've been making it so much easier for me to get up every morning and go get a shot because they take such good care of me!

Deb.

Best shot-giver ever. And always on the ball with communication to my PCP. She so didn't want her picture taken!

Deb. Yes, my two favorite nurses are both named Deb.

Sadly, this Deb is leaving primary care for a job in a different department. She's my PCP's nurse, so I've gotten to know her well and I'm going to miss her a lot. I hope they find someone as awesome as her to be Dr. PCP's new nurse!

Amanda checks me out and schedules me for stuff. She's awesome too!

I appreciate how much everyone goes above and beyond for me. I wish I had pictures of all of the other folks on my 'team'! Maybe another day! No one at the pharmacy would 'pose for a picture' today.

Blessings,

Emily

Photos: Off to get my shot and visit Anna, Deb, Deb, and Amanda.

Lyme Log: Why IV Antibiotics?

"Don't be afraid to give up the good to go for the great."

--John D. Rockefeller--

This may not be the perfect quote, but it does capture to a large extent why I decided try, risks and all, IV antibiotics to treat my Lyme disease. It's a constant struggle to find the balance between acceptance and continuing to pursue more healing options. I also live day to day, moment to moment and try very hard to accept that 'good enough is good enough' a lot of the time.

Still, when it comes to my health, even with all of the treatment we've done so far I'm still incredibly compromised physically.

I have written a long and detailed entry explaining my decision and the reatment to come for those of you who are interested in understanding more about it. If not, feel free to hit the delete button. I hope I have answered some of the questions many of you have been asking! :)

The topic of IV antibiotics is a controversial one. It doesn't come without risks. And it comes with no guarantees that it will work. It means that I will likely be very sick during the time I am on treatment. The hope, of course, is that taking the time to be sicker now and taking a few risks will, in the end, result in higher functioning and better quality of life for me.

After much discussion with Dr. Lyme, Dr. ANS, and Dr. PCP I had all three doctors on board. And despite the fact that I was not supposed to discuss the 'unmentionables' during my time off of meds, after August 20th our family spent a great deal of time discussing what to do. Could Mom do this while being back at work? Could Dad and Abbie manage the time commitments too? Were we willing to take the risks involved? Did we have the emotional, physical and spiritual energy left to do this? My parents both still look like they might faint when the issue of the port is discussed. Thankfully, Abbie is very calm about these sorts of things!

So why IV antibiotics?

Making the decision to try IV antibiotics is a very individual decision. For us, it came down to a risk-benefit call. Did the benefits outweigh the risks? It also came down to the fact that, even after a significant amount of treatment and gradual improvement over the past 3 1/2 years, I still have a long ways to go!

At this point, I have 'knocked down the burden of infection a lot,' as Dr. Lyme puts it. This makes IV antibiotics more of an option now than when we first started treatment, as I would not have been able to tolerate them given how sick I was and how sensitive I am to even small amounts of antibiotics. IV antibiotics weren't even on the table as an option early on, so the fact that we even began to consider them was actually, in many ways, a sign of progress.

How are IV antibiotics different from other forms? What antibiotic will I be taking?

Rocephin is the most commonly used antibiotic for IV therapy in Chronic Lyme patients. Unlike oral or intramuscular forms of antibiotics, IV Rocephin is extremely potent and has the ability to get EVERYWHERE in the body. And believe me, Lyme lives everywhere in the body!

How long will I be taking the antibiotic? How will it be administered?

As long as I am tolerating the Rocephin, we can continue it for up to a year. We expect that I will be on it for at least six months.

I will administer it myself through a port on a DAILY basis.

I am meeting with the surgeon on Friday to discuss port insertion and hopefully he can squeeze me in for the procedure next week.

Until then, I am continuing to receive the IM injections every weekday. We've found a way to give the shot that is NOT painful...so I'm okay with a few more injections before port insertion. We've had a nice amount of time to make sure that I am tolerating the medication before going through the surgical procedure of port insertion.

What are the possible risks?

Dr. Lyme went over the risks with me before the benefits. After we got through the risk part of things, I said "So now that you scared the crap out of me, what are the benefits?!"

As with any antibiotic there are risks of adverse reactions, getting yeast infections (in the entire body) or C. Difficile bacteria because of the high amounts of antibiotics throwing off the balance in the gut, alterations in liver and other functions, etc. The risks with IV antibiotics are greater than that of those with taking the oral form, but not significantly enough to rule it out as a good treatment option.

More of the risks come from ports--and believe me, I've heard plenty of horror stories. The biggest risks are clotting and infection.

There is also the possibility that this treatment will not help me or be effective.

What are the benefits?

As I said earlier, the major benefit is the potency of the medication in IV form. The IM and oral forms of Rocephin do not penetrate everywhere as deeply.

Rocephin does a great job of penetrating the Central Nervous System (CNS) which also makes it a good choice for me. Drugs like bicillin have targeted the muscles, organs and connective tissues, but so far we have not really tackled the core of the Lyme in me.

Some people actually do better on IV antibiotics than oral. Let's keep our fingers crossed on this one! So far, I've been doing much better than I expected on the IM Rocephin (no stomach upset, etc.). I'm almost afraid to say that as it can take a while for the Lyme bacteria to begin to die off and create symptoms of a herx (about 10-14 days).

Most importantly IV therapy may enable me to gain better functioning in the long run.

After Dr. Lyme and I discussed the risks and benefits in great detail, he felt that it was not an unreasonable risk to take. Dr. ANS agreed. Then, my PCP was on board too. My parents were on board. I'm on board.

How will I feel during treatment?

I have no idea what to expect. As you know, treatment has been very difficult in the past for me. I anticipate that the IV therapy will be more intense and make me even sicker, but I have no idea. For the most part though, I've been more calm about things than I expected I would be. And I've been taking things day by day as much as possible.

I am already weaker and more tired. I have little energy for anything other than what has to get done. Honestly, I'm so grateful I've been able to get up, get dressed, and get a bath every day still! I rest a lot, make Asher keep me company all afternoon, watch a little TV and that's pretty much my day. By the time we go to the doctor for my shot every day I'm pretty wiped. I have very little standing or sitting time and my ANS gets overstimulated very quickly, so I've had to really keep things like that can be overstimulating to a minimum. I've been incredibly conscious about pacing myself and not overdoing.

The best analogy I have for the treatment of Lyme disease is that it is like chemo. And I do not say this lightly. My best friend (who is taking care of her mom with cancer) has said the analogy is perfect. She watches how I feel during treatment and how much sicker I have to get to hopefully feel better. With chemo, of course, the same thing happens. She wrote out a beautiful explanation and comparison of chemo and Lyme treatment, which I hope to share in another blog, as I think it makes what I go through more tangible since more people are familiar with cancer than Lyme.

I knew that after my 'summer vacation' the decision about treatment would boil down to whether or not to pursue IV antibiotics. I did not feel that I had the information necessary to make the decision. I truthfully said to Dr. Lyme that I really needed his feedback and his advice to make this decision as he deals with this every day.

His bottom line was this: Based on the degree to which I am compromised, trying IV antibiotics is a reasonable risk to take. There are no guarantees, but we can hope that this will lead to improvement. He really felt that my body was ready for IVs given the treatment we have done so far. Although we have had to be very judicious about my treatment given my sensitivities we have done a significant amount of treatment so far.

Every Lyme doctor is different, some of them vastly so, in how they approach treatment. I have chosen a doctor who is fairly conservative and does not use much in terms of alternative treatment. At this point, I want this approach.

What really helped me to make the decision to go on IVs was when I asked Dr. Lyme how many patients he put on IV therapy and how often he used it. He said to me that he does not use IV therapy very often and is "very selective" about who he places on such treatment.

For me, this statement was incredibly reassuring. It made me feel comfortable (as comfortable as one can be) with the decision.

As a family we had to ask some really difficult questions of ourselves. All of us still have horrible memories of my PICC line in 2005, yet we knew we could not let fear drive our decision. If I had cancer and needed chemo, would I not do it because I was afraid of getting a port and its possible complications? No. Would I not try IV antibiotics because I was afraid of getting a port? Ultimately the answer was no. With chemo there are no guarantees either. And there are none with this treatment.

But if I don't try, I will always wonder if it might have been my best shot at getting better.

I'm not ready to say that the quality of life I have right now is 'good enough'. Someday I might have to do that. Right now though, there are still treatments left to try and that's where I'm at in my decision making. I keep imagining myself turning 35 next year and feeling like things are beginning anew. I hope I can hold onto that imagery over the next several months!

Blessings,

Emily

Photos: Vase full of gladiolas from Pam and Norm's garden. They are still in my room right now!

Saturday At The Park

Fall is always beautiful here in Pennsylvania.

Yesterday I asked Mom if we could go for a drive to see some of the Fall colors on my day off from getting a shot. I wasn't sure how I would feel today, but hoped that we could go for at least a short drive.

We managed to go on a peaceful, beautiful and restful outing to a former furnace that is now a state park. After a week of cold, dreary, rainy and gray days we had sunshine and warmth today.

The photos above and below were taken at The Lookout on the way to the park. The view of the valley was exquisite today.

I ate lunch in the car on the way to park so that I would have a little more time for an outing. We took Asher and The Rolls and I was able to sit up long enough for a little ride around the park. I didn't feel very well, but it still felt worth the effort to get out of the house, be in nature, and see the Fall colors.

The park was virtually empty today and it was lovely to be up in the mounains.

The swimming/beach area at the park which is packed during the summer months.

Mom and I have really worked out a system that makes these outings possible. We keep things very low-key, quiet and stress-free. We both just enjoy being in each other's presence. I rest when I need to. We go home when I need to. We don't have to squeeze in any big topics of conversation. In fact, we really try to keep any difficult or upsetting topics off-limits while we are on these trips. It helps to make these outings possible without overloading my ANS system.

A little stream we crossed over.

Not a lot of the trees have changed yet, but here's one that has!

I didn't get to watch the National Parks series this past week on PBS, but it's definitely on my 'to-do' list when I have less brain fog. I did flip it on one day for a few moments and happened to hear a discussion about finding God in nature.

I continue to struggle to find God's presence, to be mindful enough to stay focused on prayer, even in the midst of feeling my blessings and gratitude. I certainly seek God out, I certainly believe in God, I certainly know He is in my life. I know the peace I feel over my new treatment regimen comes from a place beyond myself. Still, moments in which I actually feel a sense of communion with God are rare. When I am in nature God's presence is perfectly clear to me.

I savor each of these outings because I have no idea how long or if I will be able to continue having them as treatment intensifies. When I can't be out in nature, I can always watch the trees and plants around our yard through the window, or bring a little piece of nature into the house. Right now we have a huge bouquet of gladiolas from a friend's garden.

I am so grateful we were able to go out today. I didn't really think about it at the time, but what a perfect way to spend the Sabbath day!

Blessings,

Emily

Photos: The Lookout (two shots); The beach/swimming area at the park; A stream; One of the trees in its Fall glory

Lyme Log: On To Step Two!

Thank you for all of your emails and Facebook notes of support. Several of you have asked how things are going, so I thought I'd check in now that Step 1 is complete.

As of Wednesday morning I've had three injections of the Rocephin, each one a higher dose than the one before.

The good news is that I have tolerated the medication thus far and have not had any major or minor allergic reactions. (Thank goodness!)

They've made sure that I get my favorite nurse (or nurses) every day. Having wonderful nurses can change the entire experience, and thankfully I've been well-taken care of.

Now we move to Step 2 (starting Thursday morning), which is to continue the IM injections for a few more days and as long as they are tolerated we will schedule me for insertion of a port.

I'll admit that perhaps I went into these injections thinking: "How painful could they really be?" But OUCH! They really hurt. I now see why the nurse feels badly giving the darned things to me and why both Dr. PCP and Dr. Lyme said that it would be difficult to tolerate the injections for more than 7-10 days.

I don't want to rush to a port at all, but I also see that the injections really are very difficult to tolerate. The best description I can think of is that it feels like a charlie horse in my toosh! The muscle pain and cramping radiates down my leg and around to my belly.

I've been icing my toosh and applying heat to my belly! I'm employing my best deep breathing techniques. And reciting the mantra "Three down, seven to go. You can do it!" I keep telling myself that if I can get through the GI attacks which last for hours on end, I can get through the 30 minutes when the pain is the worst from the Rocephin injection! Seriously though...where is the lidocaine that is supposedly in that injection?

As of now, I'm exhausted and weak from the medication. Both are symptoms I expected. I'm also having difficulty with any sitting or standing time. The increased ANS symptoms are also to be expected. Rocephin targets the Central Nervous System (CNS). So far I have not had the muscle and joint pain that I had with the bicillin injections, which targeted the muscles, joints, connective tissues and organs. I was using Zithromax to target the CNS issues, but the Rocephin will be much more aggressive at this.

I'm so thankful that so far I've at least been able to hang out in my new peaceful bedroom and at least be able to distract myself with some fluffy TV when not resting/napping. This is much preferred over those times when I am too sick to do anything but close my eyes and lie still. Hooooraaaayyy for lots of fresh new Fall TV. What are your favorite TV shows? I love this topic!

Otherwise beyond doctoring, icing and heating, meals, some TV, resting and time with the fam, I'm trying to push away the thoughts of 'shoulds' and focus on the task at hand--treatment.

I'll keep checking in as best I can! Thanks so much for your prayers and good thoughts. They continue to buoy my spirits and keep me pressing on.

Blessings,

Emily

P.S. If anyone is an expert in port types/experiences I would like to hear more. I know there are many, many types and it's a bit overwhelming!

Photos: Gerber daisies in our yard. Mom bought these in a pot for me when I moved into my new room. When they stopped thriving, she planted them in the yard. We thought they wouldn't come back, but they did! And they are still blooming! So cheery!

Lyme Log: Starting the 'Unmentionables'

When this post arrives in your inbox Monday morning, I'll be heading out shortly thereafter to start back on treatment for Lyme. Yes, it's time to start talking about the unmentionables again. I know you've missed all of that talk!

Things have been in the works preparing for the next step in treatment since my phone consult with Dr. Lyme on August 20th, so this has been a long process. I finally met with my PCP on Friday and she is 'on board' and ready to go.

One note about Dr. PCP. I'm extremely fortunate to have a PCP willing to go this road with me. Rarely will PCPs (or any doctors who don't focus on treating Lyme treat patients like me who require unconventional and highly politicized treatments). I have a really great medical team coming together to treat me and give me their best efforts to help me towards better physical well-being.

My plan was to make sure everything was in place medically-speaking and then post the details of the plan. However, as we know the best laid plans of mice and men often go awry. And instead of having the weekend to get a few things in place before treatment starts again, I had another miserable GI attack. (We still have no known cause for these and the frequency of the attacks this summer has been unsettling and discouraging.)

I'm not yet recuperated enough from my GI attack to get back to blogging fully, so I wanted to at least post a quick update to all my loved ones letting you know where I am. I have absolutely no idea what to expect from this next step in treatment, how sick the new antibiotic will make me feel, whether I'll be up to blogging or emailing, etc. I thought it best to post a short update at least!

In short, we have decided to head towards IV antibiotics in the form of Rocephin. I spent a great deal of time discussing this option with Dr. Lyme, Dr. ANS and Dr. PCP. Our family also spent a lot of time talking over the risks and benefits of moving in this direction. It was not an easy decision to make. For those of you who have seen Under Our Skin, you likely have some sense of what I'm facing. The movie actually helped to clarify this next step for me.

I feel that I'm not willing to say that where I'm at right now is 'good enough' if there is a shot (within reason) at regaining significant quality of life. Hopefully I will be able to discuss this further in a future post.

To begin this journey, I will be getting IM (intramuscular) injections of Rocephin every day this week to make sure that I am not allergic to it, and that I can tolerate it.

On Monday, Tuesday and Wednesday of this week I will get the Rocephin in doses that are titrated up each day (125 mg on Monday, 250 mg on Tuesday, and 500 mg on Wednesday). All of these doses will be done under surveillance to watch for allergic reaction.

As long as I am not allergic to the Rocephin we will continue with Step Two, which is to receive doses of 500 mg every weekday. The typical daily dose in patients with chronic Lyme is 2 grams daily, so we are taking things slowly. Injections of Rocephin are done using lidocaine to ease the pain, but they are reportedly very painful. According to Dr. Lyme, most people cannot tolerate them for more than 7-10 days, but since I am taking less than a full dose I'm hoping to stretch that out a little longer. So that may determine how long I am able to continue having repeated sticks in the toosh before going to a port!

It's been a strange beginning to the new year. And feels strange to embark on this new treatment on Yom Kippur--the day God does or does not seal us into the Book of Life for the year. I hope that I have listened well to God as I have pursued this path.

While I am nervous and anxious about what is to come, I am also ready to start treatment again. (No, I'm not ready for the misery of herxing....but I have begun to go backwards, and the longer we wait to start treatment the higher the infection burden we have to deal with).

So, as Dr. ANS says: "Onward and Upward." Or so I hope.

I'll keep in touch via blogging, facebooking, and emailing as best I can during this journey. Thank you for your loyalty through this all.

Blessings,

Emily

Photo: Impatiens are still blooming in the yard!

Autumn Begins

In honor of the start of Fall, I took a few photos around the yard earlier in the week.

The sedum are extremely rich in color this Fall. Perhaps because of the cooler summer?

The burning bush beginning to change. This is the bush we planted when I marked my 10 year anniversary of getting sick.

Yellow mum. Check out the bug hanging out on the flower!

White mums.

When I was a little girl my parents would say: "Look at that sunset! Isn't it beautiful?" I would look at them like they were soooo boring to think a sunset was interesting! They would always mention the beauty around us, but it wasn't until after I got sick that I really started to pay attention to the beauty that was right in front of me all along. Now I seek it out and immerse myself in it more and more each year.

It sure did take a long time for me to appreciate their attention to the beauty of nature. Oh, how I have tried my parents' patience over the years.

Aster.

I told Mom how much I enjoy observing the fruits of her labor!

I am still wondering how it got to be Fall already. Nonetheless, hope yours is off to a beautiful start!

Blessings,

Emily

Photos: Plants around the yard: Sedum; Burning bush; Mums, Aster.