Still in room 537

Dear friends and family,

Yup, I'm still here.  We found out Saturday morning that my body is rejecting normal platelets.  There is a name for it but essentially I have antibodies that are killing the platelets that are being infused. The count was still below 10 so I got another unit on Saturday.  This time they went from 4 to 2.  That pretty much confirmed Dr, B's suspicions.

She started trying to get the special platelets immediately.  Unfortunately none of the blood banks are open on the weekends but she was able to coerce the Mississippi Valley Blood Bank to at least start the process.  However, that meant sending my blood to Davenport, Iowa.  That was Saturday.  Today is Monday & still no platelets.  MV's local blood bank called this morning wanting four more tubes of blood.  Boy am I glad I have a PPIC line in now!

We are hoping that the platelets arrive sometime before midnight or early tomorrow morning.  Dr. B's goal is to discharge me on Wednesday in time for me to meet with the Transplant Team at UIHC.  She really wants me to keep that appointment because she is now thinking we will only go through three cycles before we start the transplant process.  She said she prays for both us every day - me for healing and for her, wisdom to do the right things.

Help me pray that the platelets arrive soon so that I can go to UIHC on Wednesday.  Please also remember Paul's friend, Rick as he is now on palliative care.  Pray for his wife, Susan, who is really struggling with the thought of life without Rick.  And, while you,re at it, a few prayers sent heavenward for Megan & Scott who are having major vehicle difficulties right now would be very much appreciated,

I have to say, if I were to rank hospital stays, this one would be the best.  The nursing care has been incredible with one little exception & that was just for eight hours & there were enough other nurses & techs around that it wasn't that bad.   Everyone is upbeat & friendly & they treat me like they really do care about how I'n doing. 

Well, I need a quick snooze before a friend from work stops by so, like Tigger, I'll say "TTFN - tata for now."

From Roon 537 - Darn It!

This is certainly not how I planned to start my weekend.  But since my platelets were at 2000 and my hemoglobin was below 8, Doctor Begum thought it best that I get admitted to the hospital.  She was quite concerned about me being at home alone with my counts as low as they were even if I got platelets late this afternoon.  Megan went with me to the appointment and she wanted me to follow doctor's orders.

I will not be working at the office next week because Dr. Begum said I am getting very run down.  What she was hoping and suggested is that I could work from home.  Again I ran into a huge road block because my dean won't give me an answer as to whether or not I can do that.  You see, we've never had a front office staff member work from home before , so she had to think about it.  Of course I had to leave the office today before she had decided upon an answer for that nor had she given me an answer about working on Saturdays.  Guess what I will be doing early on Monday morning.  If you guessed calling the Director of Human Resources, you would be absolutely right.  Of course the fact that no one has ever been in my situation before doesn't seem to make any difference to her.  I've never seen anyone who is so afraid of making a decision.  There is no reason I can't work at home because what I have to do that needs to be done fairly urgently is stuff that I can take home and use a college laptop loaded with the appropriate software and have them give me the rights to working remotely.  Heaven forbid we should try to work with an employee to make her life it easier when she's going through something life threatening like cancer.  Why that might set a nasty precedence!  Good grief this should all be over by Christmas; whats going the big deal?

Well, they are here to give me my first unit of blood & once that starts, I'm pretty sure I'll be in nah-nah land. 

Obviously, with this new turn of events, intercessory prayers are even more appreciated.  Please help me pray for strength, improvement in my day-to-day life. and as much as anything, that the dean will allow me to work from home.

May our loving Heavenly Father grant you peace, love,  hope, and joy this evening and throughout the weekend as I rest in His Loving Arms.

Running Behind With My Blogs!

  Okay, this is what I've felt like the last couple of days!  An old lady who really needed a walker to get around and who is trying to play catch-up on my blog!

My week started with going to Dr. B's office for labs and my neupogen injection.  Well, you know you're in big trouble with Dr. B sticks her head around the corner and wiggles her finger for you to come follow her.  Turns out my platelet level only rose from a 5000 to 7000 after the platelets on Friday.  "Crapolla" I say.  "Crapolla."  She gave me the worst case scenario of my body starting to reject platelets and the need for specially treated platelets most likely available at UIHC at the closest.  "Razzle-Frazzle" I say.  Well, given my count was below 10000 I hadto go over the St. Luke's for more platelets on Monday afternoon. 

First I get my neopagen and then they send me over to the hospital and let me know that they are going to put the PPIC line in when I get over there.  I was a bit taken aback by that little ditty of info., but they kind of explained that, as often as I was needing labs and blood product, it would just be easier on my veins and probably provide less chance of infection if they just put it in now rather than waiting until I start chemo again on 8/1.  Actually, it was probably a good thing because I really didn't have time to think about it.  It went in really well - cuz I had a "nice fat vein" to work with.  Here's a real shocker for all of you, One injection of Lidocaine wasn't enuf.  Who'd-a-thunk!  It's amazing me how they can thread this long catheter from my inner right arm about three inches above my elbow all the way to about mid-point in my upper chest & I didn't feel a thing.

It is tender today and I ended up having two dressing changes.  One this AM at PCI when I went in for my injection and the orders for the two units of blood I needed. Even though the site didn't bleed at all when the team was done with the procedure (not normal) it started bleeding about 10 minutes into the infusion of the platelets.  This morning the PPIC line site looked like it might be a petri dish and I wasn't in the mood for growing bacteria.  Nurses at PIC agreed and put on a new dressing.  When I got over to St.L, I mentioned to the nurses there that the PPIC line hurt like heck when I was trying to do my hair or do anything else that involved raising my right arm and bending my elbow.  They looked at it and figured out what might be wrong and since the team was going to be on the unit in the afternoon, they'd just add me to the list.  It just needed to moved to a different angle because what was happening - since I now have extra skin - was the skin was folding over on the insertion site and shoving that down farther on the catheter hence causing pain.  See, I'm not just a light-weight;  there was a reason for it.

Tomorrow afternoon when I go in for my injection, Candace said Dr. B would have the letter dictated and signed indicating that working comp. time on Saturday's was far more healthy than going back to the office after chemo or other procedures.  I haven't heard anything back from the powers that be yet relating to my request for special circumstances but I expect to hear something by Friday - especially since I will turn in the letter first thing Thursday morning.  I know this particular instance doesn't fall within the specific spreadsheet I prepared; however, there are things that need to be done ASAP and I can't get them done if I can't go in Saturday.  Right now, it's more about completing the work than anything.

A special request for prayers for Paul's friend Rick.  He is deteriorating fast.  They did a PET scan I think the end of last week and what was at one point two lesions on his brain is now 22.  He is having difficulty recognizing some of his family members at this point.  Please pray for God's will in Rick's life and for comfort for his family as he take what appears to be his final journey.  If it is God's will, may He grant him a peaceful and painless journey home to his Lord and Savior, Jesus Christ.

Prayers of thanksgiving for some special people in my life who have helped me beyond belief since Dr. B pulled my driving privileges:  Maggie, Rick, Rita, Brian, Matt and Paulette.  Don't know what I'd do without you guys.  I can't get along without friends and family and I want you all to know how much I appreciate you and your help.  Some of you know my life's story and know that it is hard for to me realize that people  really care about me enough to want to help me.  God is teaching me all kinds of things during this little jaunt.

Right now please pray that during the next round of chemo, which as I said, starts August 1, the bad cells go away and my body - through the power of God (cuz my body sure isn't cooperating) starts to grow healthy cells so that I can undergo the stem cell transplant in somewhat better physical condition.

Peace, love, hope and joy,

Carol

I've Been Researching...................

Yup, that's lil' ole' me!  Cute little thing, aren't I??????  I've spent about an hour and a half trying to dig up specific information on the stem cell transplant process and what I have found is this:  "Have patience dear child.  Everyone is different and you will be given lots of information that is pertinent to YOU on July 31st when you meet with Dr. Silverman and the Transplant Team."

Remember my dear peeps, I'm praying for tolerance and not patience. Also need prayers for courage to ask friends for help in getting to appointments.  I think I said in yesterday's blog that I will still drive to work since it is literally five minutes from getting into the car to getting out of the car.  But I will mind the good Dr. B and get rides to appointments.  When I think about how bad I felt last Wednesday, driving down the interstate (freeway to Californians and expressway to Chicagians) was probably not the smartest thing I've ever done.  But I've been pretty convinced on more than one occasion that God has provided me with a special angel to accompany me when I'm driving. 

Ya know, God is a pretty cool guy!  I'm really blessed that His Son, Jesus Christ, was willing to give up His life for me so that I can be assured of eternal life.  What is more important to me right now is that I can go to the Father in prayer and know that He hears me and He hears all of you.  We are so blessed.

I just got off the phone with my baby brother, Paul.  He continues to be very concerned about his friend Rick.  The chemotherapy that they had been giving him for his brain has quit working and Rick hasn't been responding to Paul's voicemail messages as he had in the past.  Please remember Rick and his wife, Sue, in your prayers.

Also, please shout out prayers of thanksgiving for my incredible care team!  My doctors, nurses, dietician, infusion team at St. Luke's, the chemo staff at PCI, and the lab people and office staff at PCI. They really really care about how I am doing and aren't afraid to show it.  Dr. B. always gives me a big hug before she leaves the exam room and Candace gave me a hug yesterday as well.  If I'm gonna be sick, I'm glad I have this group taking care of me.  (Okay, maybe there are those two leeches in the lab that need to go hold a penny on the wall with their noses for about eight hours some day!  But, God loves them too!)

Well, I need to get to bed because I have a big day tomorrow?????  I have to get my injection, make a bank deposit, pick up a prescription, buy some groceries and then, I HAVE to bake a birthday cake for a very special young lady.  I tell ya, once a Mom, always a Mom.  Matt texted me from Chicago relatively early this morning and wanted to know if I could save his little butt because he totally forgot about a birthday care for Joelle "with all the hub-bub of going to Chicago."  But, he and Joelle have both been helping me out and he did ask very nicely and was very appreciative when I said I'd bake it for her. 

What is it about boys anyway?  Megan is this wonderfully mature, responsible incredible young woman and the boys are .... well, they're still boys!!!!!  But, I love 'em all just the same!

Please pray that the chemo has killed enough bad cells that my marrow can start producing some good cells cuz that's the current goal.

God bless you all.

 

 



This Little Piggy Can't Go to Market

No cute graphics tonight because I'm using my tablet again.

Had my appointment with Dr B. today with a blood draw first. Dog gone it I didn't like the results. Two things: 1) my platelets were down to 5000 so I had to go directly to the St Lukes infusion center with no passing go andno collecting $200 & 2) Dr B. said I'm not supposed to drive anymore.  I could handle number one; but number two throws a wrench in my works.

I told Dr. B that I would be a good girl and not drive except to work.  Good grief, I only live about 3 minutes from work and since I'm going in early everyday to make up time for appointments etc., there really isn't any traffic on the road I take.

To complicate things even more, today I was started on new medication for me, neupogen a white cell growth factor.  I am to receive an injection everyday for the next 5 to 7 days.  Now that's just swell!  I get told I can't drive and then I'm told I have to come in for injections every day. On the weekend I have to go to the St Lukes infusion center.  Fortunately I am blessed with incredible friends and hopefully helpful children.

Today, because none of my children were able to join me at my appointment, my dear friend Maggie was able to go with me.  I don't know what I would have done without her.  She was those second set of ears that I tend to need and more importantly she was a huge help with getting me to the hospital, getting my car home and getting Rick, my ex-husband, back to his car.  Rick was kind enough to take me home from the hospital. Of course, me being me, that couldn't go without a hitch.  Just before we left the infusion center I noticed what appeared to be a couple of bug bites on my right shoulder.  As we went down the elevator those spots started to itch and I found another spot.  Because I had had my pre meds of Tylenol and Benadryl, and the spots started to really itch even more, we decided we should go back to the infusion center.  The nurse decided she needed to call the doc on call who ordered another benadryl and wanted us to stay for another half hour.  So we follow those orders and what should have taken a little over an hour and up being a good 2 hours.

Rick thought maybe I should hire someone to start video taping my life cause it sure wouldn't be boring.  Oh and yes, another phlebotomist bit the dust at PCI today: that makes two on my list.  I'm sorry, if, when you stick I get tears in my eyes and I jump you should be able to determine that it hurt and don't act surprised. Then, knowing that it hurts, it really isn't okay to start playing around in the vein on the last tube to try to coax out that last little bit for the type and cross. 

Enuf of my fun day.  I hope that you all had a better day and that you have a blessed and happy weekend.  Again dear friends and family please feel free to continue to lift me up in your prayers so that I can remain "in His loving arms."

Trying a new toy

Today was a much better day.  I still feel odd but I can't explain how I feel.  Sometimes I feel weak and shaky and sometimes I feel fine.  Today my stomach was kind of strange but this evening I feel better.  I haven't eaten anything since I left work because I took a nap and I do feel better but I should probably eat something just not quite sure what.  Right now Blue Bunny chocolate ice cream sounds better than anything but that may not be the most healthy.  At least its dairy and has calories and it sounds good.  I ate a healthy lunch of a salad with eggs and a smart ones Swedish meatballs and then had I snacked on a good amount of carrots and celery with ranch dressing in the afternoon.

The representative from the Transplant Team at UI HC called me back this morning to give me a little information and as we were talking I asked about how soon I might expect to meet with the Team.  She said that I was on her radar to call to set up an appointment and we could go ahead and do that now.  It was another one of those nothing ventured nothing gained moments.  We will be meeting with Dr. Silverman and her Team on July 31st at 3 in the afternoon.  I feel like we're making headway here just to have that appointment scheduled.  As soon as I got off of the phone with Julie @ UIHC, I called Dr B's office and let her know about the appointment.

As a quick follow up to yesterday's blog, I did apologize for my poor behavior and I did prepare and submit a request for a special circumstance for compensation time. I must admit the initial email response I received wasn't all that encouraging but I remain hopeful and prayerful.  As you can tell I'm trying to crawl out of those loving arms again and not letting our loving Father remain in control.  Please continue to pray that I rely solely on Him and His healing, love, grace, power, and infinite wisdom.

This is a short blog this evening but I have to tell you I love this dictating thing and it will make blogging more frequently easier - maybe.

Please include in your prayers my brother's friend Rick as well as a young girl named Kayla who was recently diagnosed with an autoimmune encephalopathy and is undergoing studies and treatment at the Mayo Clinic.

Today I'm saying a special prayer of thanksgiving for my Pastor Erika on her birthday.  She is such a blessing to me and to St John Lutheran Church in Ely, Iowa.

Dear friends and family feel free to continue praying.  I won't stop you now because they are working miracles in my life.  I continue to need prayers for tolerance at work , for trust in the Lord , and for a renewed sense of peace.

Peace love hope and joy to you all this evening and throughout your day tomorrow.

Guess where I was today - Part 2

Okay so I still haven't figured out everything about blogging. I couldn't figure out how to add text to the graphic I had inserted on my desktop computer. I was hoping to be smart enough to save the draft and dictate the text.  Oh well the graphic on the first blog for today kind of gives you an idea that I was hooked up to some sort of infusion again today. 

I woke up this morning feeling really bad. Not sick bad but weak and light headed bad.  Went in to work at 6:45 and by 7:30 I decided I needed to have a CBC drawn because I kept feeling weaker and weaker and my leg muscles kept feeling mushier and mushier.  Good call on my part. my hemoglobin was at 7.4.

I have to tell you that I am surrounded by the most incredible care team imaginable. It starts with Dr. B. and her nurse Candice and the chemo group at PCI and then the phenomenal nurses at the infusion center at St Luke's Hospital in Cedar Rapids.  I was able to go right over to the hospital for the blood transfusion and Patty was willing to stay a little late so that I could get both units in today rather than having to go back tomorrow morning for the second unit. That would have meant missing another 3 hours or so of work. and, as we all know, that is a huge issue for me!  Everyone in the infusion center at St Lukes is incredible. Karen and Patty are so compassionate and Jeremy is just plain wonderful. The staff on the weekends is just as great as the group during the week. I'm really lucky in that regard.

Pray that now that the bad cells are dying new good cells will grow instead. I need to prepare an eCard for some wonderful young lady who is having a birthday tomorrow.

May I our loving Father continue to carry us in His loving arms.  Good night,

Guess Where I Was Today!

Friends and family,

This was my day!  I admit to a complete and total chocolate mess meltdown.  Something came up that hit me so hard it shook me to the core and made me so angry I cried.  I mean I really really cried - for an extended period of minutes with breaks in between conversations with several individuals.

This is only the second time I've really cry cried since this whole thing started.  I've gotten weepy a number of times but never totally uncontrolled crying - today was the worst.  Problem is, I was crying because I was MAD.  I was mad and felt undermined.  I felt as if I was being treated like a child.  I felt as if my years of dedication and hard work and love for my Department were worth nothing.  I felt as if I had no value at all.  As if a stupid "procedure" that had never been discussed before in my entire career there was more important than I am.

I ended up meeting with the HR Director who is probably the best hire my employer ever made!  He is extremely well educated and knowledgeable when it comes to labor law and human resource management.  He is also extremely talented at coming up with alternatives and thinking outside of the box but within very reasonable limits. 

So, dear family and friends, prayer request du jour is that the proposal our HR Director suggested I submit will be "respectfully considered" and approved.

My wonderful baby brother, Paul, was amazed and maybe a bit appalled (not "a Pauled") at my description of my behavior as I was telling him about the experience.  His theory is that I was possibly dealing with some "roid rage" from the steroids in the chemo.  I don't know, but I must say, I haven't been that mad in a very long time.

Now, I should probably go downstairs and grab a couple of dips of Blue Bunny Peanut Butter Panic ice cream before I retire for the evening.  Justification: protein in the peanuts and dairy, calories galore (I'm still losing weight) and I just plain want some!

Please add a dear friend of Paul's to your prayers.  Rick is struggling with cancer and in crisis at the moment.  Both Paul and Rick are believers in the incredible power of intercessory prayer and so I'm asking that you lift up Rick as well.

Here is to a better day tomorrow!

From a Busy Friday to a Busy & Tired Saturday

Ah, today was a tired, busy day.  It followed a busy Friday.

I was alone in the office a good share of the morning and the phones and walk-ins were coming in from everywhere and most of the phone calls weren't quick and easy answers.  I needed to research transcripts, test scores, etc., etc., etc.  I hadn't had a headache in about three months but I ended up with one yesterday.  But, it wasn't anything a couple of ibuprofen couldn't handle - that and a walk through the drafty halls of Linn Hall!  The weather was glorious and the construction guys were swapping out windows.  Oh darn, the breezes were wafting in again and I just kept drinking that peach iced tea!!!!!

In the afternoon I had an appointment with Dr. B, my local hematologist/oncologist.  I so love that woman!  Megan was sweet enough to come down to be with me.  She brought Jack and Maddy with her.  Dr. B loved the kids and the appointment went well.  My blood levels are pretty much hanging around where they have been.  My platelets were down to 10,000 again so I had to have one unit of platelets today along with my chemo.  My neutrophils continue to be over twice what they were when the labs were drawn at UIHC.  I'm very happy about that -- I can still eat fresh vegetables!!!!!  My hemoglobin is down just a bit below 9 if I remember correctly so I'm a little more tired than usual but, all in all, I'm doing well.

I did get THE LECTURE though from Dr. B.  Because I actually feel better than I have in about six months and possibly because of the steroids in the Dacogen, I have spurts of energy and apparently I move to fast so I have all of these bruises all over - even more than the ones reported previously!  So, I have to be good and slow down!.  Brian is coming over tomorrow to help with a couple of things & I know I'm going to have him carry my vacuum down the steps but I may even try to beg him to do the vacuuming for me - remember, I am not the most graceful swan in the pond!

It was great that Megan and the kiddos could hang around at my condo while I received my chemo after the appointment with Dr. B.  When I got home I had fun watching Jack scoot and roll around on the floor exploring all sorts of things and Maddy and I waxed artistic and did some watercolor painting.  I love her color concepts!

But I digress!  Dr. B is a little perturbed with the docs at UIHC.  She's not happy that I haven't been hooked up with the Transplant Service yet.  She really wants me to be ready to start the stem cell transplant process as soon as I'm done with my fourth cycle of chemo.  She wants to get the show on the road immediately.  As I understood it, she thinks we should be starting to look for matches now instead of waiting until after the fourth cycle because we will have wasted precious time.  I guess I agree with her.  She was going to send her report to Dr. Carter and communicate to him she wanted to get going on things.  We'll see what happens in the next week or so.  I will see Dr. B again next Friday and I have lab draws Mon., Wed., and Friday to see how I have responded to the first 10 chemo sessions.

I do have a particular prayer request right now.  For some reason financial concerns are mounting in my mind again to the point where I am a bit weepy if I talk about it.  I know I'm in His Arms and things will work out but for some reason, right now, finances are weighing heavy on me.  Could be because my car needs a new timing belt and new tires over and above the oil change I've put off the last two weeks because of my crazy schedule with chemo.  Not quite sure but your prayers around this nagging area of concern at the moment would really be appreciated.

As a matter of explanation, I'm not in dire straights by any means.  I will have long term disability and I do have retirement funds as well as other funds and my medical insurance will continue for one year after the first day of long term disability.  So the worries are probably not realistic, but they are there.  The overshadowing concern is probably the fact that I very likely will lose my job.  I think that may be what has struck me right between the eyes right now.  We had a staff meeting on Thursday and we discussed our upcoming evaluations.  We have to make goals for next year and, right now, I'm not sure what my status will be.  It is remotely possible they'd keep my position open but, until I know more about the whole stem cell transplant thing, I just don't know.  From what I've heard, the likelihood that I'd be out of work for less than 90 days is extremely remote.  That is all FMLA allows.

In an effort not to end on a downer, tomorrow is my last day of chemo for 18 days!  Praise the Lord and pass the ammunition!  Being free of a hep-lock will be wonderful.  I've had to be fairly careful not to get the wrapping wet and not to whack it (easy for anyone but me to do) and I'm really looking forward to being able to wash my hands briskly rather than gingerly!  Thank heaven for my dishwasher!  I've still had to do some hand washing but I am "very coreful" as Megan used to say when she was about Maddy's age.

Once again, I thank you for your continued prayers because I truly feel them.  I felt them before and during our staff meeting and I needed them then.  God knew what I needed and your prayers were heard!

Peace, joy, hope and love to you all.


  Tha- tha- that's All Folks!

Hi there friends and family!  What a gorgeous day it was in

 Iowa today!  One of those days when you wish you didn't have to work or sit in a recliner with fluids dripping in your arm for an hour and a half.  But, now I'm sitting at my computer in front of an open window with a lovely breeze wafting in and loving every second of it!

Only three more days of this round of chemo and then I have 18 days off before my next 10-day session.  I really don't mind it at all.  I just wish I didn't have to miss so much work.  Having said that, Candace, Dr. Begum's (Dr. B) most awesome nurse has the whole next set of appointments set up as late in the day as possible.  I tell ya, your prayers are working for sure.  I feel great, the care team I have is extraordinary - including the chemo nurses and I'm a happy camper.

Was one little glitch today - but I wouldn't be me if there wasn't.  Had two perfect stick sites for the new hep-lock today.  Lisa found a wonderful fat little vein; needle/catheter went in fine, good return and then nothing on the first stick.  Then Crystal tried another spot up higher on that same fat vein - again, went right in, great return and then it blew.  Shazbot!  No good reason, just me being me!  So, they called in the reserves. Before Crystal went to get Wendy, she wrapped my arm back up in the heating pad and I sat and cooked for a while.  It took Wendy a little while to decide where she was going to go hunting worms - oh, I mean veins - but she found one she really liked - it's just kind of in an unusual place.  It's on the lower back side of my left arm.  But, it's really comfy now that it's wrapped up and it's in a place where Dr. B said it could stay for the 4th day if my neutrophils look good tomorrow. 

Megan just let me know that she will be joining me when I see Dr. B.  I am so blessed to have such wonderful children.  I can't begin to tell you how much they mean to me - and always have.  It is especially comforting to have her there because of her nursing background.  She is so very smart and understands what Dr. B is saying and can ask the right questions that I probably wouldn't even think of at the time.  I'm even more excited because she is bringing Maddy and Jack as well.  Dr. B will love to meet them and I know they will be angels.  I've been with Maddy when we accompanied Megan on a prenatal visit.  She was soooooo good.

I was up late last night visiting with Matt and finishing my blog which took me forever because I couldn't find it on my desktop - so, okay - so I have too many gmail accounts and I couldn't remember which account Pr. Erika and I used to set up my blog.  Gee Whiz - I was getting two units of packed red cells that day.  That meant my hemoglobin was low, people. That means there is less oxygen in my blood and that means there is less oxygen going to my brain and that means I have momentary brain lapses.  THAT'S MY STORY AND I'M STICKING TO IT!

On an unpleasant note, I received some EOB's from my insurance company today.  I tell ya, even though I worked with insurance companies at several medical and mental health facilities, and have dealt with them for years with our families insurance and helped with Rick's Dad's huge bills at Mayo, they just never cease to amaze me.  Well, "amaze" may not exactly be the word I'm thinking of but it's the one I'll use in print!  Mr. Wellmark of Blue Cross and Blue Shield shall be hearing from me tomorrow about his crazy way of calculating my co-pay.  Listen fella, we play the game the same way all of the time, not one way one time and another way another time.  They don't want to mess with me right now.  Remember, I'm stupid intolerant at the present time!  Kind of like lactose intolerant only much worse!

On that note, family and friends I bid you a fond good night.

Please continue to keep me in your prayers.  I can truly feel them surrounding me - especially today during an office meeting.  Thank you for that.  I needed those prayers and your provided them.

May God provide you with restful sleep this evening and may He bless your activities tomorrow resting in the blessed assurance of eternal life.

I'm now going to go to bed to truly rest "In His Loving Arms"

I'm Going to Cry - But It's OK

Some days I just hate computers!

I just got done writing a nice long blog and then accidentally deleted it.  Not quite sure how I did it, but I did.

Had a really good day today.  Got lots of sleep last night and feel much better today - refreshed and less crabby!  My lab work shows that my blood levels are staying pretty much the same and I find that encouraging.  My neutrophils are actually above what they were when I saw Dr. Carter at UIHC.  Platelets are staying at 16 and my hemoglobin seems to like to hang around 9.something.  But, I'm feeling well and not getting totally winded so we'll hold off on transfusions.

Felt well enough to go to WOW this evening - Worship on Wednesday.  It was great to get back with the small group that attends.  It is an informal, kind of intimate worship service including communion in which we have a Pastor lead group discussion over the texts for the evening.  Our Pr. Erika is incredible and is doing such great work in our church family and our community.  She is such a blessing to me in so many ways - both physically and especially spiritually.

I was able to share with the small group this evening how much their prayers mean to me and just how important the intercessory prayers of all of my family and friends and their family and friends mean to me.  Without them, I would be lost.

There is lots more I want to share but it is 2327 and somebody has to get up at 0530 tomorrow to go to work.

Thank you for your continued prayers.  They are being heard by our blessed Lord and He is holding me "In His Loving Arm."

Peace, Love, Hope and Joy to you all.

Day 4 & All Is Well

It's summer in Iowa! Hot & humid - you know, the kind of day when you can hear the corn grow! But for me, it was still a good. Well, if you & eliminate any contact I had with fluids. So, I' supposed to increase my protein intake my dietician was kind enough to give me some samples of Ensure Boost. Today I opted for the chocolate Ensure. So I'm at work & decide I'm going to try & choke some down. I tried to open it but it wouldn't budge. So, not being a male, I decided to read the directions on the lid. First thing I see in large print is "Shake Well." So, being the obedient type, shake it I did. Oh, and then the stupid lid decided that would be the appropriate time to open! I had about 2 Tbsp of stinky, sticky chocolate Ensure in the right cup of my bra and about 1/4 C all over the over-blouse I was wearing. Fortunately we are in our new office space and we have a sink & towels so I was able to do some cleaning up. Took th overblouse off tried to clean it up as best I could.There weren't very many people in the office & no one else in the breakroom so I tried to clean out Ruby's hideaway as best I could but cold & sticky just weren't making it for me. So, dear readers, for the first time in my life I actually stuffed a tissue in my bra! Then then I had several experiences with my Diet Caffeine-FreePepsi that involved much carbination & overflowing of the iintended receptacle. While being infused,I somehow - I have no clue how - tried to get resituated in the recliner & somehow said receptacle went flying off of the attached side table. Oh, but it doesn't end there. I had another appointment after that & decided I wanted some water from their water cooler but first I needed to rinse it out. Now problem, I had to go to the restroom so I could do it there. Ya right! I left with water sprayed over about 5 square feet of the bathroom. Why can't they make sinks big enough for MY needs??? No more beverages for me today! Okay, this Tablet is making me crazy be adding weirs stuff in all over. I can't even insert a picture or clipart. Thanx for you continued prayers. Without them I'd be lost, May our loving Heavenly Father continue to abide with us all.

Having Too Much Fun to Blog Yesterday - Sorry.

Well, I'm not really sorry.  I had a great day yesterday.  Still feeling terrific.  My platelets are obviously tanking as I got bruises just scratching an itch above my left knee last night!  And oh the beauty on my left thigh!  You see, there were too many cooks in the kitchen (we were making take-out spaghetti with meat sauce, and garlic cheese bread and just plain garlic bread from Zio Johno's) and somebody moved one of the walls on me!

Megan came down in the morning with Maddy and Jack.  Scott was in Cedar Falls playing home repair man with some help from a friend.  I didn't get to spend as much time as I would have liked to with them because of my chemo but I loved every second of the time I had.  Maddy was on a roll and Jack is scooting all over the place.  They are growing so fast.

Rick's sister, Barb, and his Mom came in to see the kiddos and me and we all had the spaghetti dinner together thanks to Barb.  It was really a wonderful day.

Matt and Joelle took me to the hospital for my chemo and I was able to schedule today's session for 10:00 rather than 1:00 so that I could go in to work for three hours.  I did get quite a bit done and I won't feel so pressured for the rest of the week this way.  It also looks like I should be able to get through the week without using any sick leave / FMLA!  YAY!

Matt and Joelle insisted I go to a movie with them after everyone else went home last night because I was a bundle of energy and was doing all sorts of stuff they thought I shouldn't be doing.  We were going to see Despicable Me 2 but got there just a bit late; however, we were just in time to see The Heat.  I haven't laughed like that in a while!  It definitely is rated R due to the language but, frankly, without the language it might not have been as funny.  Melissa McCarthy is hysterical and Sandra Bullock, well, she's Sandra Bullock.  These are two of my favorite actresses and they were great together!

In the afternoon was also able to talk to one of Matt's high school friends - well, they're still friends really, but Anthony was around our house quite a bit during high school and he just kind of nuzzled his way into my heart and become a pseudo-son before too long.  Got to kind of reconnect with him at his wedding and then he stopped in for Matt's graduation party so it was nice to kind of fill him in on what's been going on because I had mentioned to him that I was going in for the biopsy and asked for he and Lara to add me to their prayers -- he's a super star so he did that, added me to his church's prayer list and had his parents add me to their church's as well.

I am so blessed to have so many many friends and family who have friends and family that are lifting me up in prayer.  You have no idea how much good that is doing.  I continue to feel well, I continue to be very positive.

The only downside right now is the low platelets so, if anyone is interested in playing an appropriate version of connect the dots on this old bod, come visit cuz there are certainly enough black and blue dots to connect!

I will have lab work done again tomorrow and chemo everyday through Sunday.  On Friday I will have more labs and then meet with Dr. Begum again to see how things are going.  I did learn yesterday that they are planning on giving me medication to help boost the production of my white cells since my neutrophils are so low. 

Keep praying because our loving Triune God is obviously listening and answering our prayers.

Peace, love, hope and joy to you all on this Sunday,

Carol

Day One - Road to Recovery

Very interesting day!  Not at all bad, but interesting.  One would think that if my platelets were at 20,000 on Tuesday and I received one unit of platelets on Wednesday that my count would be better today but, as usual, leave it to me to be different!  Today my count was down to 12,000.  That could explain the honkin' lumpy bruise on my right arm that I have no idea what I may have done to earn and the small bruises on my little finger and my middle finger from wearing my rings today.

I've had no adverse reactions to the chemo at this point and it's been about three hours after leaving the PCI clinic.  In fact, I was hungry as a horse when we left and, since I had to stop and pick up a prescription at Target, their stupid Pizza Hut outlet grew arms and pulled me in and made me buy some bread sticks.  OMG, the sensation reminded me of the text I got from Megan when she first got over her all day morning sickness, was able to eat something besides buttered pasted and said she'd forgotten how good potato chips tasted!  Warm bread sticks, oozing with grease and parmesan cheese!  Who cares about the grease stain on my jeans - that's why we have Tide Sticks! 

Matt and Joelle are still here helping me and we're having grilled burgers and corn on the cob for dinner this evening.  I can't wait!  Matt and Joelle took me to PCI for my chemo and stayed with me except for a few minutes when they ran to get a snack.  It was really nice to have them there to make the time go more quickly.  I'm so blessed to have them so close by.  They are spending the night again tonight so they can go with me again tomorrow.  Megan and Maddy and Jack are coming tomorrow and I'm excited to see them.  I won't be able to play with them as much as I'd like because I have a hep. lock in so they don't have to keep sticking me each time.  They'll be able to use the same IV insert (hep. lock) for three treatments to save my veins.  It only took 1.5 hours and I was able to talk to the staff there in person and we were able to get my times set back to 2:30 on the days that I don't have any other appointments at PCI.  I figured if I didn't asked, it wouldn't get changed for sure!

Again, thanks to your unceasing prayers, I wasn't the least bit apprehensive.  As the nurse started the Dacogen, I made the comment that we were starting the road to recovery!  I was amazed at how calm I was and the more I think about it, the more amazing it is.  Seriously, I'm more of a chocolate mess when I go to the dentist than I was today.  Maybe I should put out an emergency prayer request each time I go in for my six-month dental check up?????

Right now, I'm going to do a quick ...



thank your for all of your prayers, ask you to continue praying and,
                                            above all, thank our loving and powerful Triune God for continuing to
                                             bless us all and for keeping me In His Loving Arms.

Tomorrow the Road to Recovery Begins

I have chosen the name for my blog because I am truly "In His Arms."  Because of my faith and the intercessory prayers of family and friends and their family and friends, I am being held in the loving arms of God.  While there are times when I try to climb out and try to manage on my own, it is through the prayers of others that I am held firmly in His arms.  I am truly blessed to have so many people praying for me.  May God richly bless each and every one of you.

I know that I am being held in those arms because I have never been scared or afraid from the time my primary care physician called me through today - except for a short time when I learned that my platelet count had dropped from 22000 to 9000 in less than five days.  After talking on the phone to a wonderful friend and then to Megan and Maddy by phone a short later, I was back in His arms again and have been there since.  As many of you know, this isn't normally how I handle things.  Remember the basal-cell carcinoma removal and the infection that followed?  I was mad, in pain, wanted to give up, etc., etc., etc.  Not this time.  With the prayers of others and the help of incredibly gifted physicians, my own stubbornness and the help of family and friends, we will beat this stupid syndrome. 

Tomorrow the recovery begins.  I will receive my first chemotherapy treatment.  I will be getting IV Dacogen.  It is supposed to be fairly "friendly" to the patient.  The only side-effects are supposed to be nausea and vomiting and possible mouth sores.  I will be given meds to combat the nausea together with the chemo and have been given a prescription to take at home if necessary afterwards.  I will be getting Dacogen for 10 consecutive days, a 28 day rest, then another10-day regimen and a 28-day rest followed by another 10-day regime and a 28-day rest and then a final 10-days of chemo.  If my blood counts haven't improved prior to the last regime, we will start the stem cell transplant procedure after than set of chemo.  If the counts improve prior to that time, then we will proceed with the stem cell procedure sooner.

The hardest part for me is asking for and accepting the help of others.  I'm supposed to be the caregiver, the Mom and the one who takes care of things, not vice-versa!  It is also difficult for me to deal with limitations.  I'm not supposed to get out of breath; I'm not supposed to be denied the calming effects of tending my roses; and I'm not supposed to get really angry when dealing with people who aren't meeting my expectations (which I now describe as "having no patience for stupid").

My intent is to add to this blog on a daily basis to keep you all updated as to my condition and what else is going on in my life.  It won't all be dull.  I haven't lost my sense of humor and certainly don't intend to.  That being said, as the deformed cell die, I will likely become more tired and even with transfusions, I may be tired enough to skip a day or to.  But, I'll do my best!

Just know that I am thankful for each and every one of you that is thinking about me, concerned about me and praying for me.  May God richly bless you for caring about me.

Happy 4th of July - be safe and have a great time! 
 
 Have an oinking good time!