Unanswered Prayers
Posted by Mimi on January 21st, 2010 filed in Healing, Humor, RescueComment now »
Just before the New Year, I was feeling a little puny from having had too much Christmas cheer. I had been to three Christmas celebrations in as many days and I was whooped. Flat on my arse. Wiped out.
I knew my MIL was coming over because she had given me the usual vague “I will be there some time later today” comment. It doesn’t really matter when she says she will be at our house anyway, because she is always late. I am talking hours, not minutes. Now I know where Dave got it.
On this particular post-Christmas Monday, I needed a nap. Dave was entertaining Cooper upstairs and it was nice and quiet downstairs. I knew I had to shut down for 20 minutes so I could function the rest of the day.
I curled up on the sofa, pulled the blanket over me and rested my weary head on a comfy pillow. I took a deep breath and then exhaled. Ahhhhhhhh.
Then, as if right on cue, the MIL knocks on the door. This sets the dogs off. ERRRGH.
Now, before I share the rest of this story, let me give you a reference point. My MIL loves to talk in a voice that is two octaves too high. Even more grating, she talks to everyone as if they were a baby, including mis-pronounciations and stretching each syllable into two or three syllables.
She walks in carrying a pie plate with a 1/4 of a pie and looks at me and says with a squeal, “Hiiiiiiiiii! What choo doinnnnnn?”
Hmmm. . . I can see how my body language and position might confuse her, what with me lying down on the sofa under a blanket with my eyes shut. So, in order to let her know right off the bat that I wanted to nap not chat, I opened one eye and sleepily said “I am trying to take a nap,” and quickly shut my eye.
“Do you need anything?”
“No. Just a nap.” (um, and quiet)
“Would you like some yummy pie?”
(What the hell? No I don’t want “yummy” pie, I WANT SLEEP!)
“No thanks. I just want a nap. I only have a few minutes. I need to take advantage of what little quiet time I have,” I mumble, without even opening my eyes. Then, to punctuate my statement, I pull the covers up and stretch out a little.
She goes in the kitchen and puts the leftover pie in the refrigerator, talking baby talk to herself the whole time. Seriously lady, speaking of pies, shut your pie hole! I can’t nap while eating pie or while listening to you talk to yourself in a high pitched baby babble.
“Can I help you?”
(Yes, as a matter of fact, I know a very specific way you can help me.)
“NO. I JUST NEED A NAP.”
“Is there anything I can do to help you nap?”
(Seriously? Are we still having this conversation?)
“NO. I just need quiet.” (And ear plugs and a gag, apparently)
“Can I pray for you?”
Jesus, Lady! (pardon the pun). Can you pray SILENTLY. Perhaps in the other room. For a really long time?
“Sure” I sigh, hoping she will do just that and leave me alone.
Then I feel eyes boring through my skull so I take a peek. HOLY SHIT! Her face is a few inches from mine. Total violation of my personal space. And patience.
“Where can I touch you where it doesn’t hurt?”
“Nowhere.” Besides, why the hell does she have to touch me? Is she afraid God will get confused about whom she is praying if her hand isn’t on me?
She places her hand on my knee and proceeds to pray out loud for about 5 minutes. It felt like an hour.
I swear to you, I am not making this up. She prays that I will be able to have a nice refreshing nap with no interruptions and will awaken refreshed. I can not imagine that this irony gets past her, but we are talking about a pie toting, baby talking, bible thumping person who talks to herself.
When she is done, I pull the covers up as if to say LEAVE ME ALONE.
Seconds later Cooper comes running down the stairs.
Nap time over.
To make matters worse, she goes in the other room for a few minutes then comes back in the room and sees me working on the computer. In her best squeaky baby voice she says, “hey! I thought you were going to nap!”
Oh.My.God.
The Little Drummer Boy
Posted by Mimi on December 31st, 2009 filed in Humor, ParentingComment now »
On Christmas Day after Cooper woke up, he climbed in bed with me and snuggled up. While enjoying the moment, I heard Dave turn on the water in the shower.
“Daddy shower,” Cooper informs me.
“That’s right, Daddy is showering,” I confirm.
A few minutes later I hear Dave get out of the shower and start brushing his teeth.
“Daddy brush teeth.”
“Yes, Daddy is brushing his teeth.”
Then we hear the familiar sound of finger nail clippers, and both know that Dave is trimming his toe nails.
“Daddy fix feet!”
“That’s right! Daddy is trimming his toe nails,” I say.
A few minutes later I hear Dave rip a huge fart. Pfffft-pffft -pffft-pffft!
“Daddy beat on drum!”
Exhale
Posted by Mimi on December 15th, 2009 filed in Boobs, Healing, TumorComment now »
Finally. Now that I am past the Swine Flu and surgery, and PICC line and a debilitating Lyme flare, I have a chance to tell you that Dave’s radiation is over. We can exhale until his 3 month follow-up MRI.
We stayed with my dad, about 30 minutes from the Cyberknife Center that did the radiation. Overall it went smoothly. I had so many fears that never materialized. I am so thankful that it is over and that it went as well as it did.
The week before his radiation we went for the day and got cat scans, an MRI, met with the doctor (who looks a lot like Stephen Colbert), admissions, and the coordinator. And they made Dave’s mask, which looks like a tricked out Jason from Friday the 13th mask.
See what I mean? It is very “Spiderman meets S&M”.
Every day for five days we would drive to the center. Half way there, Dave would take a prescribed happy pill to keep him from becoming unglued while being partially strapped down to a table. Dave is quite claustrophobic. Having said that, I think I would have wanted to take the pills, too.
When we got there each day, Dave would lay on this table
the staff would put in our healing CD (Music as Medicine, by Nawang Khechog –big shout out to my friend Melanie who sent it to me many months ago), and then disappear behind a huge lead door. Then this machine 
would zoom around his head and give him targeted radiation to the tumor.
All the while, the machine took non-stop x-rays so that if he accidentally shifted too much, the machine would be notified and would not radiate the wrong area. This machine is quite precise.
It was very humbling to see all the patients at the center, because we knew most of them did not have a non-cancerous diagnosis and many were there because a prior cancer had metastasized. We met some wonderful patients who were in the midst of fighting for their life but had incredible attitudes.
One man was missing his nose and had a bandage over it. He had a really warm personality and I could tell he was a staff favorite from the way they greeted him when he came in. One woman told us how she is being treated for cancer and her husband had just been diagnosed the prior week.
We also met some wonderful people who work at the center. Especially my instant friend Anita, who helped me emotionally more than she probably realizes, and even entertained Cooper while I sat in on a visit with the Doctor. It really made us dread the treatments less, and Cooper looked forward to going since they had a pumpkin display, vending machines, puzzles, and a drinking fountain.
His favorite day, however, was when they put up a couple of tables for Breast Cancer awarness. Besides a bowl of candy which got his attention, they also had prostetic breasts on display. At a somewhat quiet time (and in a building that echos), my boob-obsessed child grabbed a breast and yelled “nursie, nursie!” Thankfully the ladies at the table had a great sense of humor.
We are so thankful that we can close the door to this chapter of our lives and look forward to a healthier 2010.
Onward and upward!
Memory Lane
Posted by Mimi on November 28th, 2009 filed in Healing, LymeComment now »
It has been frustratingly chaotic here. A few days after my surgery to remove my infected port, the doctor called and told me the lab had tested my port and the infection would not succumb to the oral antibiotics. He told me to get to the hospital asap to get a picc line installed so they could start me on iv antibiotics.
So, lets see. . . .I had a port to administer iv antibiotics, but it got infected so they removed it, only to replace it with a picc line to give me iv antibiotics. Okay. That isn’t ironic or anything.
The procedure should have taken an hour, during which they push a catheter in my inner arm up through my shoulder to my superior vena cava (the same vein my port fed into) just above my heart. Notsomuch. The x-ray showed the catheter had done a curly-q in my chest and had to be pulled back. Then, when the nurse tried to straighten it and make it point down toward my heart, it flipped up and went in my neck. Every time she flushed it with saline, it felt like a goldfish was swimming the backstroke in my neck. Finally, they hooked me up to a continuous x-ray machine and she nailed it in a few minutes.
The next day, the doctor called to say he couldn’t get home health care on board and that I had to go to the hospital for my first infusion. He told me I might have to spend up to two nights there. He was hoping they would discharge me the same day, but couldn’t make any promises.
I lucked out and got to come home that evening. Actually, where I lucked out is that I didn’t become septic, which results in death in half of the cases.
I have to do three infusions per day.
Now the bad news. Either the stress of the surgery, the infection, the picc line installation, etc. or the new antibiotic has pissed off my Lyme. My pain has returned to what it was about eight months ago, my hands and feet have swollen up, my left arm stopped lifting more than half way, and my right knee has blown up again. It isn’t a cantaloupe like last time, but it is noticeably larger and it is HOT to the touch. I had been cutting my Fentanyl patch in half and rarely taking a Vicodin. I am back to the full patch and taking Vicodin to even get out of bed. Even with the pain meds, I am still in huge amounts of pain.
I’m not enjoying this limp down memory lane.
I Needed This Like I Needed Another Hole in My . . .
Posted by Mimi on November 21st, 2009 filed in Animals, Healing, Lyme2 Comments »
BIG TIME DISCLAIMER: IF YOU ARE A BIT OF A WIMP, GET NAUSEATED EASILY, CAN’T WATCH MEDICAL SHOWS, DON’T LIKE GORE, ETC., DO NOT LOOK DOWN. JUST STOP READING RIGHT HERE. TURN YOUR HEAD. YOU’LL BE GLAD YOU DID.
For all you “brave” souls, if you are still with me, I would like to give you an update on my port saga. As you know, it was infected and the infection had tunneled up toward my scar and burst out of my skin from the inside, so I had two seeping holes about the size of a pencil eraser. Well, not anymore. Nope. Now I have a hand crafted and ever so handy “breast” pocket made of flesh. Forget the pencil eraser, now I could carry the whole pencil case around. Or reading glasses, or. . .
Before surgery:
After surgery:
I was thinking it would be uncomfortable, but not too bad. Especially when I made the decision to change the dressings at home instead of having a nurse come twice a day. Oy.
I didn’t realize the doctor used what seemed like the world’s largest roll of gauze along with a butter churner to cram it in my chest. I was yelping while trying to remove the gauze. The gauze sticks to my flesh and you can hear it ripping as I pull it out little by little. It is agonizing.
Our first plan was for Dave to do it, but when I realized how badly it hurt, I wouldn’t let him because I knew it wasn’t fair to him. I think he was relieved, though he did have to stay close, in case I needed help and because I wasn’t sure I wouldn’t pass out.
After about an hour I had pulled all of the gauze out of the bottom hole (which is now only slightly larger than the diameter of a pencil eraser) and a little of the gauze from the top hole. I had to start sitting down because I was seeing stars and getting dizzy.
I began to look a bit like a human Kleenex dispenser:
If that picture turned your stomach, don’t keep scrolling.
This is your final warning.
Even I was overwhelmed when I saw how deep the hole in my chest is. It is approximately three inches deep and the opening is about two inches wide.
I have to change the bandages two times per day. I don’t really think about much other than when my next bandage change is scheduled.
I have many more pics, but I figure you have had enough. Thanks for all your well wishes via email. . . I really appreciate them.
And if you hear a faint yelp that sounds like my voice, you’ll know it is bandage change time.
P.S. Temporarily, my new them song is the hymn “Holy, Holy, Holy!”
Same Song, Second Verse
Posted by Mimi on November 19th, 2009 filed in Healing, LymeComment now »
Okay Universe, this is getting ridonculous. I have been nice about it. Patient, even (pardon the pun). I have discussed all of the fabulous, life altering lessons I have learned from the last few years, particularly this last one. I have tried to see the bright side and all that. I have even tried to be thankful.
Now, I would like to say: BACK THE HELL OFF OF ME. HOW MUCH SHIT ARE YOU GOING TO PILE ON OUR PLATES? OUR PLATE IS FULL, FULL, FULL, DAMNIT.
Why the angst you ask? I’ll tell you. By day 10 of the swine flu (H1N1) I began to get suspicious about why my fever wasn’t gone. Even with a compromised immune system I should be over the flu by that time. I was so very sick of my quarantined bed-slash-jail cell.
On day 13 I took off the bandage covering the port-a-cath in my chest so I could shower, and this is what I found.
EEEEWWWWWWW! And that is a cleaned up version on the first day - you should see it now. blecchh.
For those of you not familiar with a port-a-cath, it is basically the size of a peppermint with a long tube attached. It is surgically installed in the upper chest. One part is “tied” or anchored to a muscle. The long tube is then threaded through a large vein toward your heart. It make receiving regular ivs much easier.
To “access” the port, the nurse (or handsome husband in my case) creates a sterile area and inserts a special Huber needle which has a 90 degree angle.
It pierces the skin into the center of the port-a-cath. Then a bandage covers it and you can easily twist connect the tubing for iv bags. The needle has to be switched out weekly, but otherwise you are walking around with a tube hanging out of your chest like this:
I had noticed it getting red (like in this picture) after a nurse had to pierce me seven times because she couldn’t find the center of the port.
After two rounds of antibiotics to treat it, it is totally pissed off. I took my needle out and put a regular bandage on. As you can see from the first picture, there is a hole in my skin that covers where my port is. Unfortunately, the infection tunneled upward to the original incision site and it broke through my skin from the inside out.
I went to the surgeon today. He took one look and said “this needs to come out tomorrow.” I swear he would have put me under right then if I had been fasting. Worst of all, he can’t sew me up because it is so infected. He will leave the incision open and we will have to stuff it with gauze and change it out twice a day. Big fun.
So, if you are reading this Friday morning, I am probably in surgery right now. Say a little prayer for me or send me good thoughts, or whatever floats your belief boat.
Oh yeah, and Universe. . . .I didn’t mean to get all in your face.
Theme Song
Posted by Mimi on November 7th, 2009 filed in Adventure, Healing, Humor, Lyme1 Comment »
Because I am ailing, My lovely Step Dad brought us a clever dinner combination of pork ribs and lime-aid. Very appropriate. However, he wasn’t taking any chances getting sick, so he “made the drop” by putting the food on our picnic table outside and high-tailing it out of here. Smart man.
Since I’ve had Swine flu I have had lots of time to sit and think. I like to envision how the Lyme might be pissed to have it’s “home” invaded. Ha! Now it knows how I feel! TAKE THAT, YOU WORTHLESS LEECH!
I can’t help but to re-create the words to one of my favorite songs, to fit my situation. (DISCLAIMER: If you do not know the song “Particle Man,” by They Might Be Giants, please do not attempt to read my lyrics, or you will think I have totally lost it, which could be true regardless. If you do know the song, I hope you’ll be singing it all day).
Spirochete man, Spirochete man
Doing the things a Spirochete can
What’s he like? It’s not important
Spirochete man
Is he a corkscrew or is he a speck?
When he’s in a deer does he get bit?
Or does the tick get bit instead?
Nobody knows, Spirochete man
Porcine man, Porcine man
Size of entire universe man
Usually kind to person man
Porcine man
Spirochete man, Spirochete man,
Spirochete man hates Porcine man.
They have a fight, Spirochete wins
Person man, Person man,
Hit on the head with a frying pan
Lives her life seeing doctor man
Person man
Is she depressed or is she a mess?
Does she feel totally hopeless?
Everything’s attacking person man
Exhausted man, person man
Person man, Person man
Person man hates Spirochete man
They have a fight, Person wins
Person man!
(If you would like to hear the original version, you may listen here. Please excuse the lame graphics, I was trying to find the one with the best sound quality.)
Oink Oink
Posted by Mimi on November 2nd, 2009 filed in Animals, Healing, Humor, Life, Lyme2 Comments »
This is almost comical. But not really.
I have the swine flu.
Bacteria and viruses love me.
It hit me super fast yesterday and I got a high fever. Today I was better, but went to the doctor anyway because we want to make sure it wasn’t an infection in my port-a-cath. He tested me and voila! Swine flu.
I guess my lyme is defending it’s territory and attacking the H1N1 because I don’t feel that bad. I don’t feel great, but I don’t feel like I am going to keel over or anything.
I am, however, squealing, grunting, and I have an unnatural craving for rolling in the mud.
Life is not boring.
Update
Posted by admin on October 29th, 2009 filed in Uncategorized1 Comment »
We have finally completed Dave’s radiation. Thank God. A more detailed post is forthcoming.
Parting Ways
Posted by Mimi on October 12th, 2009 filed in Adventure, Healing, Lyme, Rant, Rescue1 Comment »
I am stranded in the dark ocean. I am barely treading water as the waves pummel me and storms blow me around like a child’s bath toy. The water is cold and harsh and my body is exhausted with just trying to stay alive. I am scared. And tired of fighting. I don’t think I can do this one more second. I think of dying, saddened to think my son will grow up without a mom. I think of my family and friends.
I didn’t think it would end like this. I fear my last gulp of air.
Just then, a life preserver crashes over the next wave. It is big and round and orange. I struggle to put it around my waste. After adjusting, I get some much needed rest. My strength builds, and ever. so. slowly. the storm recedes. Then the sun - and my hopes - rise up over the horizon. I float along, still too exhausted to swim. But, now I know I am not going to die from this.
Then I see it. The beach head! I start paddling frantically. Finally! My toes touch the sand beneath me and I slowly approach land, swishing in the water along the way. I collapse on dry land and recharge for hours. Days. My body trembles slightly as I get up to walk.
The next part of my journey lies in front of me.
But now, the very thing that saved me from certain death is slowing me down. It is heavy and burdensome. My body tells me it is ready. To let it go. I am scared to part with what saved my life. But I know it isn’t doing me any good now.
Through tears, I thank the the life preserver and toss it back into the ocean. I am grateful for it. . . for how it helped me rest and strengthen. . and where it brought me. And now I send it back from where it came, praying that anyone who needs it will find it.
And now I walk without it.