Platelets (with updates!)

I am here at the doctor today to check my counts.  They were low on Friday.  And we just found out they are even lower today.  I am trying not to worry...it is amazing where my brain goes.  I wish there was someone here I could talk to and ask if this is normal even though I am taking nupagen?  My bones aren't hurting like everyone said they would, and my counts are still low...white blood cells, 0.3 where normal is 4.8-10.8.  But it is known that the chemo I got  last Friday causes the lowest counts 7-10 days after...which is now...so it is probably all fine.  I just never noticed before because we weren't monitoring my blood everyday.

But they say I need platelets today.  So now we are waiting for Atlanta Blood Services to drop off platelets for transfusion.  I am scared.  I have never received blood products before. But my platelets are 17,000 when normal is 150,000.

The patient next to me just got platelets and now he is feeling some reaction and the nurses are paying him attention.  I can't take Benedryl and they don't have an alternative.  If I have a reaction they are going to have to shoot me with hydrocortisone.

But, Michael is here with me.  He helps keep me grounded.  We are working on our photo book from our trip to Oregon.  That makes me happy.

Please send your love and most importantly your strength today.  I know you will, you always do.

p.s  things you learn around here...take your hat off and let your ears breathe before they take your temperature from your ear-drum.  If not, they freak out when the thermometer reads 99.4!  I almost got antibiotics again...but I let my ears breathe and it came down to 97.9.  ... sheesh...

UPDATE:
I have successfully received my first bag of donor platelets!  I am so very grateful for whoever was kind enough to spend the time to donate these.  The kindness of strangers is pretty amazing.   Secondly, I did not have a reaction!!  And I was spared having to get benedryl OR hydrocortisone!  And thirdly, I want to thank Skype for getting me connected with my dear friend Dawn who called in just as the platelets were just beginning to go in.  She was there for me with love and support and strength...I asked and she gave.  And it has been like that since day one.  Dawn has always always been there on my rough days, just when I need her most.  Thank you Dawn.  And finally, my women's circle Skyped me in!!!!  AHHH!!  How cool is that??  They put my little computer face head in the circle and I got to be there for check-in :)  All while sitting here in the infusion center with platelets bringing me life.  I just love those women and are so grateful for them!

So we are done.  Time to pack up the computer and enjoy the rest of this beautiful sunny day!

Love you all!

UPDATE 2:
On our way out of the infusion center I ran into a nurse practitioner.  Now was my chance to ask about the low blood counts and if it was normal.  She calmed my fears and said yes, don't worry.  It takes time for the cells to come back after chemo even with the nupagen.  So okay...exhale...and I did, and Michael and I came home, made a healthy and tasty lunch and went out for a long walk to enjoy this sunny 65 degree weather.  :)

Quick Update

Photo by audi_insperation

 Hi All, me here just to say I am doing well. Lockdown is taking some getting used to, but it is all part of the process. Right now I am feeling on the upside of the chemo a week ago :) Still a bit ADD and fatigued, but not sick. Blood counts are down, but I am doing shots to stimulate my bones to produce. I love my bones. Thank you for working so hard for me :) We know you will work hard enough to get my counts up high enough to start the stem cell collection next week.

So we are going through the motions. Mom and I are spending a lot of time together but it hasn't been bad as we've been keeping busy with walks, cooking yummy food, reading, meditations, massages, and getting my house organized! Oh, and naps...did I mention that? haha. Lockdown is hard for this roaming soul, but it will be a good practice on moving inward.

So there you have it! One foot in front of the other and trying to live in the moment.

YOU can save lives!!

Fight cancer while watching a movie! Please help save my life and peoples lives like me who are receiving a bone marrow transplant with your generous donation of platelets or blood. There is a critical shortage and your donation will be a great help towards successful recoveries of blood cancer patients! Atlanta Blood Services supplies my clinic, but volunteer anywhere to make sure there is enough to go around!

Platelets are of highest demand for blood cancer patients and volunteers can donate every 7 days up to 24 times a year!

the good things

The things I hope to always remember...

I was lying on the couch last night after a really rough day and Michael comes and cradles me in his lap. We just lie there, lights almost out, no music on, no tv on. Just us. Him holding me, me feeing his breath, comforting, and loving. I know he is with me for this long haul, he is my rock, my best friend, one of the best things that has ever happened to me. He knew that we needed no words, we just needed to be there in the arms of each other, feeling our hearts beat. He knew I needed to be held up in his arms, he can give me strength.

After awhile my parent's call to check on us with such love. They let me cry, without rescue. I get to talk to dad for awhile and he shares with me wonderful things that get my mind off the day. We say our loving goodnights and I make my way to bed.

It was early still, so Michael was up and around making food for us for the weekend. I put on Adyashanti's meditation CD which has become such a source of strength for me even though I fade in and out of listening. In my veil between the worlds of sleep and wakefulness I have these amazing sensations of being cradled by loving hands. It was an extension of my meditation with Patty and Mary the night before where we did some amazing energy work and I truly felt the arms of many, of us, of you, of the divine, cradling us. It was incredibly powerful and also a source of strength.

So that is how I drifted off to sleep, cradled in love, with a sense of protection and hopefulness.

And that is how I want to remember yesterday...not the ins and outs of yesterday...which were...

I had begun to notice the night before that my heart kept fluttering when I sat in certain positions. From my previous experience being awake during my port procedure a year and a half ago, I remembered that if the catheter was in too far that it would cause heart arrhythmia's. So this was my concern that I brought to the chemo nurses attention yesterday morning. So began the day where mom and I toured 9 rooms of Northside Hospital between x-rays, EKGs, admissions for surgery, and then surgery to correct the catheter that was too far into my heart. I couldn't go under sedation for this procedure since I had eaten, so I bit the bullet and went under the knife with an Ativan under my tongue. Needless to say, the procedure was extremely painful--going into a fresh wound and all with a whole lot of tugging and pushing and pulling, but I had the best team of nurses and doctor's there for me. It was incredible. The one nurse that was by my side every step of the way...I'll never ever forget him. He let me squeeze his hand so hard I am sure I bruised it. They had complications because they had to put this port on my left side (they normally do the right because it is the straightest shot, but I already have a port on my right side). So in correcting the problem, they had to bend the catheter in newly damaged tissue, which was inflamed already. Because of the complication, and my obvious scared reaction they decided to give something to me to help calm me down, which made things better. Finally they got it, and in the nick of time...because we had to be back for chemo!

As you know I already had to postpone chemo one day because of the benedryl reaction, and I was NOT interested in postponing another day. AT ALL. I wanted to get the show on the road! There was a bit of a flexing muscles show between the nurses and the pharmacist. The doctor was fine with it. I got agitated and tearful...I think that melted a heart a bit. So it all came down to ... if I could be back by 2:00pm, they'd consider it. And, if there were some real reason I needed to postpone, I would have. So by gosh, my mom and I high tailed it all over that hospital. She even took me by wheel chair back to the chemo place after surgery promising that she'd bring it back (we didn't want to wait for someone to haul me over there). And we made it back by 1:45!! My mom is totally awesome. Have I mentioned this before?? :)

So they hooked me up to the pre-meds, then the chemo and we left the hospital at 5 pm, 10 hours after we got there.

I felt pretty terrible by the time I left the hospital. Nausea, head fog. I got side-tracked before I could even count the number of drugs they put in my body yesterday. But I was home, and I figure I have gotten off to a rocky start, but there will be rocky times during this, and we see that I still make it out okay. If I have times like my night last night, then it will all be okay.

I slept well last night and have been feeling much better today. I met a new friend at the transplant center today and she is a week post transplant with the best attitude. She looks great, and says even though she's had her share of hurdles, she is doing better each day. What an inspiration!!

SO in deep deep appreciation to you all for your cradling hands that comfort me as I drift off to sleep. I love you!!

(how do you like my fat, red little steroid face??, Oh, I just love it.)

Two days in...

and I am still here! But, there have been some bumps along the road.

New catheter was placed yesterday, with more conscious memory of the whole thing than I'd hoped for (the nurses too). But it is done, and I am hardly traumatized at all (I am getting tough!!). I just let out a little yell when he pushed the thing through my chest cavity...So success! I am feeling the usual pain of surgery again, and last night brought back memories of nights after surgery...Michael helping me get in and out of bed, getting me pain meds, comforting me sweetly when I jolt awake from some nightmare. He is so amazing, I can't imagine having a better husband, really I feel like won the lottery finding him. I just feel sorry for him that he doesn't get much sleep. And, it is sad, we were talking last night and couldn't recall how many nights we've had like this anymore...We are getting good at just dealing with it, and not bringing the emotion with it. So that is good--progress!

So today, mom, my excellent, most awesome daytime caregiver, comes and gets me at 7AM for our first chemo appointment. All goes smoothly to start, they hook me up to IV fluids, give me IV anti-nausea meds, and steroids. Just when the nurse practitioner walked up to check on me, the infusion nurse comes in and pushes a syringe of benedryl in my line. Immediately I begin to feel really weird, my heart starts racing, I get really dizzy and have to hold my head because I feel like it is going to explode, or my eyes will bug out, or I will let out screams of panic, tear off my IVs and take off running through the hallways. I could barely talk, and my words sounded garbled. And then I started uncontrollably shivering all over my body and was freezing cold. It was really really scary. Fortunately the team of nurses there are right on top of things, the nurse practitioner held my hand, my mom came by me and put her hands on my shoulder. She could relate as this type of adverse drug reaction happened to her with novocaine at the dentist. I remembered just thinking to breathe this out, breathe this out. So I would close my eyes and take deep breaths and imagine I was on a sunny beach. I kept being ripped away from that beach in fear, but came back to it, and the breath. Meanwhile the nurses are putting oxygen on me, doing and EKG, and taking my temperature and blood pressure (159/99)!! and then give me some IV Ativan. That also helped me come out of this scary time. And now it is all over my chart says all over it not to give me IV benedryl ever again...

The bad news though is that I find out in the middle of all this that they also worry about my reaction being a display of a systemic infection. If there were a bacterial infection in my line, they could have pushed it into the blood stream with the benedryl dose. The onset of symptoms can be just as fast, which is partly why I have to have a 24/7 caregiver. (I couldn't have driven myself anywhere during that). They kept taking my temperature and it went from 98.4 to 98.9 to 99.7 even though I was shivering so much. They said shivering was a sign of infection. SO, they hooked me up pronto to IV antibiotics just in case. They took blood to culture, but that won't be ready for 48 hours.

So needless to say, they didn't do chemo on me today. I had a day of lots of drugs, just no chemo. :( I was pretty bummed out, feeling depressed because the last thing I wanted to do was create such a dramatic scene on my first day here. I also didn't want to get off schedule. But none of this can be helped. I just need to be grateful that that horrible feeling DIDN'T last and I didn't need to be admitted to the hospital. They are taking precautions by waiting because if it is an infection, the last thing I need is chemo to hurt my immunity. So I trust these nurses and doctors and go with the flow.

So I moved out of the scary part, it did end. :)

Mom and I spent a bit of time de-stressing and reminding ourselves that this will just all be as it is, and it will be perfect. Everything will be OK, right mom!? It is okay that the schedule is off, it is okay that I took all these extra drugs for nothing (or maybe not if it was an infection!). Then, I dig out my ipod and listen to Adayshanti's Meditation CD on "let everything be as it is" and I drift in an out of drug induced sleep haze with his calm voice in the background.

And then my drips are done, and we go home! Mom is here with me now--babysitting day two. Yesterday we tackled laundry, today Mom is cleaning up the kitchen disaster leftover from 3 days with a clogged sink (Michael finally got it fixed this morning after a late night with a hired plumber...) So she is busy-bodying herself while I lie on the sofa still feeling like I got chemo, but didn't...makes you realize how much these other drugs can make you feel like poo too...

So I am good. I feel proud of myself for not freaking out and causing a scene...I was so very on the verge of having a panic attack, but I talked myself down. Well, I guess I did cause a scene just from all of the medical attention, but I didn't cry (I think there was one tear..). I just breathed, in and out, in and out. And closed my eyes and held on. And I made it through the other side.

P.S.

It is raining really hard right now in Georgia.  I checked the weather and there is 100% chance of heavy rain tonight.  I seem to have noticed that rain seems to be surrounding my heavy experiences.  I like that just fine...kind of comforting.  It gives my tears some company :)  And it washes over me...

Such love

I am in tears reading this post from my Aunt Patty.  She has been a pillar of strength these trying months and I couldn't feel more lucky.  So here we go!  Tomorrow starts the ctrl-alt-delete!  Here's to reprogramming!

http://patriciabralley.blogspot.com/2011/02/stem-cell-evie.html