A shadow or a friend

I'm not going to lie, this has been a really rough stretch. I am very grateful to have found this new doctor. He is brilliant, a mad scientist of sorts with a resume that impresses and a laugh that can shake the two story building I go to every day for IV infusions. The treatments are seven days a week and take approximately an hour. Instead of placing a port surgically, he opts to just use your veins every day with a fresh poke. He prefers to use the hand veins. I did not take to this well. For some reason my hands are super sensitive and I bruised terribly after the each of the treatments done in them. The actual stick of the needle was very painful and then the entirety of the infusion burned and was uncomfortable. I ended up after a couple of days with both of my hands bruised thoroughly and found myself dreading going in. The needle would come out and I was miserable, the jab into the hand and I felt as if I'd puke, and I just hated it. After some coercing, we moved up and to my arm veins and now I am much happier. The stick is still uncomfortable, but only for a moment and then the infusion is a breeze. The office is full of laughter and silliness and we always tend to make it fun, so that helps. It's the aftermath of treatment that's killing me. I am definitely herxing and it is no fun. I feel like I have a flu on steroids. It's like arthritis, the flu, and food poisoning had a baby. Ugh. I have never in my life felt as fatigued as I do. It's a struggle to do almost anything. I'm trying to maintain my pet sitting and mobile pet care stuff, but it is a challenge. I've had to drop my art class. It's a total bummer, but I tried and at this point in the game, it just isn't in the cards. I keep reminding myself that if I just focus on my healing, I will be able to take all the classes I want and enjoy so many things again on the other side of all of this.

Since day 3 of treatment, things have gotten really hard. I have trouble driving from one place to another, even if the trip is only a few blocks away. Any task is a huge mountain to climb. HUGE. I've found myself having to take naps or lay in the fetal position after 10-15 minutes of doing anything. I have spent all time that I don't HAVE to be somewhere, in bed. Even being in bed is uncomfortable. Every bone and muscle in my body aches, my headaches are almost around the clock, the nausea is relentless and I'm just plain uncomfortable in my skin. I've developed an infection in my throat and mouth from the releasing of the toxins. I've also been having spells of sadness. These waves come over me and I just sort of surrender to them for now. I feel like it's a necessary release. I don't dwell or fixate on it, but I do feel what I need to feel. It's just not a pleasant time. I also have been having intense abdominal pain. I have been able to feel the uterine tumors by palpitating my abdomen for some time now, but this week they have taken a turn for the worse. I often have take baths in the middle of the night or early mornings to alleviate the muscle and joint pain. The other morning as I was laying flat in the bathtub, I realized that my abdomen actually looks misshapen and you can eye them now. I had an abdominal exam as this concerned me and they have grown substantially in a matter of a week. It looks as if they are actually rapidly growing the same way they did two years ago. They have been quickly growing for some time, but this is back to the record breaking growing by the looks of it. My Dr. believes they need to be removed now. It looks as if we are not going to be able to wait till the 42 days of IV treatments are complete to go ahead with the surgery as originally planned. It's looking like I will need to get in for surgery sooner than later and the IV treatments will just be given to me in the hospital to keep up with my treatment plan. My doctor believes that the tumors have now caused a partial obstruction and waiting any longer is dangerous. This may be the other reason I have been feeling so horrible this last week. I have an MRI scheduled for Tuesday. He wants to get a clear picture of exactly what's happening in my abdomen and make sure it's nothing more than what's suspected. Besides, they will need an MRI no matter what to map the surgery. So back into the MRI space machine to sit motionless for what feels like forever, for the 4th time in my life. Grr.

Now, on to the good news... Feeling really sick during treatments most likely means that the infection is being killed and the little nasty spirochetes are dying off. Yay. It's nice to be able to stop when I'm feeling like I've been hit by a bus and remind myself that this points to progress. I have also been reading a lot and strengthening my spirit as much as possible. I'm finding strengths inside myself I didn't know I had. Ideas are coming up for creative projects and I see the light shining brightly at the end of this ridiculous tunnel. On days when things feel unbearable or overwhelming, just the right person calls or I open a book to the right page and am reminded to readjust my thinking. This is an opportunity, not just an illness. I feel an appreciation for my body now that I didn't have before. I don't think I will be taking things for granted anymore. I have no desire to self destruct or escape in unhealthy ways. I see the beauty and gifts a healthy body offers. And, when I have mine back, I won't take it lightly. When I'm well again, I think my life is going to take off in ways that I hadn't imagined. I feel good things coming and I trust it.

I had a lovely experience this week with a hospice patient. She's a cat lover and really wanted to see a cat. So, I was just the volunteer for the job. Her cat had died and she's now been placed in a convalescent hospital and can't get another pet. I managed to muster the energy and take Bob the cat to her. Her face lit up when we entered her room and she cried at the sight of Bob in all his shiny black fur. She looked so sick of being stuck in her room with the repetitive TV buzzing noises at her in the background. She seemed depressed and lonely. I related to her in a very small way. It was amazing to watch a light come into her eyes that wasn't there and then to see the exchange of love between her and Bob. It was some of the best medicine I've had all week. She asked me to come back, and I'll keep that promise. I also had the opportunity to speak to the new hospice volunteers in training this week. It was an honor. It felt good to get out of myself and although lyme was there in the room with me, it wasn't the focus. I shared with them (and reminded myself) of the great gift there is in helping others. In some ways it's a very selfish act, because you always come away with your heart feeling a little fuller. Filling your heart when things feel dark is imperative. It keeps you from sinking into a dark or numb place for too long. It allows you to practice compassion with yourself and others. They can give me all the medicine in the world, but the true healing comes from the help, hugs, support and laughter of my loved ones. Everyone deserves to have that. It's a rough world, but it's not hopeless. I feel like this world is in such a bizarre place right now. It seems like there is a train of destruction moving full speed in one direction. We need to move another train of compassion and change full speed in the other, no matter what our struggles are. And, ironically, it is often our struggles that give us the ability to get on that train. My sister in law sent me this poem this week and I felt such a resonance with it. It had me in tears. It is simply beauty and truth dancing through words. It reminds me of the Kahliil Gibran quote from the Prophet, "Joy is our sorrow unmasked". I wanted to share it with you all in case you feel the resonance as well. Please be well friends. I love you.

Kindness

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and
purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you every where
like a shadow or a friend.

-Naomi Shihab Nye