I Changed My Mind

For those of you who have turned here from my Carepage, I apologize.  I’ve been told that it is much easier to comment on the Carepage than it is on the blog so I’m going back there.  If you’ve forgotten the sight, send me an email to my “pig” email address and I’ll be happy to provide it to you.

 

Sorry for the confusion.

Last Posting on This Blog Spot for the Time Being

 

 

 

I just wanted to let you know that from now on I will be keeping in touch with you all from my site on CarePages.com.  It is a site provided through University of Iowa Hospitals and Clinics - and other hospitals as well, I believe.

 

The title of my site is "Still In His Arms."  However, to find my site, go to CarePages.com and in the search box type "Carol Glass."  It is possible that a number of us will be listed.  That is when you narrow the search by looking for Still In His Arms.

 

If you have trouble, email me at stjstephenm@gmail.com and I can try and get you hooked up.

 

For now, I need to get back to finishing my laundry and packing the rest of my belongings to take to the hospital for a month!  It has been suggested that we take personal items with us to help make our rooms feel a bit more homey.  I'm going to take some recent artwork of Maddy's and some of my pigs and some other little things.  I'll also have my cell phone, my Tablet, several books including the Lutheran Study Bible and The Story as well as having access to a lap top and some VCR tapes and DVDs from the UIHC library.

 

I am so thankful that you have been so faithful in including me in your prayers.  It has been and continues to be what is keeping me in His Arms and able to maintain a positive attitude and a strong faith.

 

May God richly bless you for your prayers and concern.  Now the rough stuff begins but I am strong and stubborn and most importantly, a child of God and I will be cured of this cancer and back being Grammy to Maddy and Jack in about a year.

 

Love to you all,

 

Carol

One More Quick Thing to Pray About, Please!

Today we went to see my Transplant Team doc, Dr. Silverman.  All of my CBC blood counts are amazing and she said my recovery from chemo is really very good so now is the time for the transplant.  But, there is one little hiccough - my creatinine is a bit high.  That indicates a potential kidney issue.  It isn't high enough to cause major concern but it seems to be climbing.  My orders for the next several days are to drink lots of water and stop taking Calcium +D and Vitamin D.

Please help me pray that I can drink as much water as possible and that my creatinine level drops down to within normal limits.

Everything else is all set.  Paul will arrive on 9/30 and Matt will pick him up at the Des Moines airport and bring him to my place.

The other little glitch is that I have what may be another basil cell carcinoma growing on my left arm just above my wrist.  It has gone from a little flat scab-like thing to a bump about the size of a pencil eraser and it is a bit painful.  I asked Dr. Silverman about it today and she wants me to see a dermatologist at UIHC and have it removed before I get admitted to the hospital on 10/4.  Hopefully that will be a simple matter.

At the moment, Megan and the kiddos are here.  I went to Cedar Falls to get them so Megan could be with me at my appointment.  She had originally planned to drive down but Scott was told last night that the right front tire was too bald to be driven on the interstate highway with two children in the car.  I didn't mind at all - especially since Megan asked if they could spend the night.  Scott will come down in the morning with their camping gear so they can go camping with Matt and Joelle.  Maddy told me I was going too but I'm not sure I'm up for that.

My grandson needs some attention so I'm going to sign off.

Thank you for your continued concern and prayers.  Without you and them, I'd be in a much difference place right now.

Carol

Finally Have All of he Details!

 



Okay, first I have to apologize because I had promised this either Tuesday evening or Wednesday morning and I didn't get it done.  I didn't have ALL of the information until this morning actually so pleased cut me some slack. 

 

     1.  Little brother, Paul (and I use that term referring to age only - is he 6'7" for crying out loud!), will be flying from San Diego to Des Moines on September 30th.  His round trip air fare is BEING FULLY PAID BY ANGEL FLIGHT AND SOUTHWEST AIRLINES!  More prayers answered.  Southwest doesn't fly into Cedar Rapids but we are more than happy to pick him up and take him back to Des Moines.  Praise God for another little miracle!

     2.  He will go to UIHC on 10/1 for a meeting with the Donor Coordinator and have his medical work-up done that day.  Then he'll come back and stay with me.

     3.  He will be given his chemo here at my home until 10/7.  At that point, he will need to go to the hotel in Iowa City overnight and will donate his stem cells on 10/8.

     4.  I will be admitted to UIHC on 10/4 and will be started on heavy-duty chemo that day.  I will receive chemo for between five and seven days and receive Paul's life-giving stem cells on 10/10.

     5.  On 10/11 Paul well fly home to CA and finish moving into his new residence as he will have started his move on 9/28 and 29.  As in he will move out of his current place on those days and get stuff put into the new place but will need to spend the weekend of the 12th and 13th making his new place feel like home.  I'm so lucky to have him as a little brother.  He's kind of put my life first lately and I can't thank him enough for that.

     6.  I will then be in the hospital hopefully growing a bunch of new stem cells and blood cells of my own from Paul's stem cells for the next 21 to 28 days and then hopefully be discharged home.

     7 .  My wonderful older brother, Don, will try and schedule his arrival on or about the same day I'm discharged and will be my caregiver  (or "babysitter" as Megan says) for the next week or so.  He will be a very important person in my life at that point.  I will still be in the very early stages of recovery and will need his assistance doing pretty much everything.  I can't go out in public other than to go to my appointments back at the U seemingly very frequently - to which Don will have to drive me - he will have to watch for any changes in my condition of which I may not even be aware.  He'll need to make sure I'm eating properly, exercising as I should and all of the other babysitting responsibilities.  Now, I'm not sure I'll ask him to do it, but my condo is to be thoroughly cleaned every week to avoid infection.  I will be extremely susceptible to infection for the first 70 or so days I am home.  Maybe one of my other friends can do that and he can have a well deserved break.  Other friends have offered to come over and allow him some free time as well. 

 

I am so blessed to have such an incredibly supportive family - brothers, kids, even my ex-husband is supportive and helpful.

 

I'm also blessed to have all of you, my family and friends who continue to pray for me and keep me in His arms.  It is because of all the prayers that these little miracles keep happening.

 

Peace, love, hope and joy!

 

 

 

 

 

 

 

 

 

 

Today's blog will be very short &, as you can tell from this little guy here (no relative), pretty boring because I'm hoping to be able to tell you all of the good news next Tuesday or Wednesday.  The Transplant Team has meetings Tuesdays at 1:00 at which they discuss their patients and, in my case, will make final decisions.  So, assuming I'm not getting a transfusion or something like that on Tuesday or Wednesday, I will jump on my blog site and share!

I will say that today in Cedar Rapids was glorious.  It was actually cold in the house because I had windows open all day and left some windows open during the night.  When I checked the temperature downstairs, it was 69.  I know that's two degrees warmer than what I set my thermostat at in the winter, but after temps in the upper 90's, and the air conditioner set at 76, it was downright chilly!  It was nice to be able to walk outside for a bit.  I need to do more of that!

Well, I did say this would be short and I haven't eaten or even fixed dinner yet so.....

 



Some people may call them miracles of modern science but I call them another of God's miracles!

My brother Paul is a donor match!

Praise God!  The ever diligent guy that he is, he decided to call Liz, the Donor Coordinator, at UIHC to make sure they'd received his test kit because she had told him they would call me with results within 7 to 10 days and that time had passed and I hadn't received a call.  So even though he overslept yesterday and would be a bit late for work, he took the time to make the call.  Then, rather than rush off to work, he took the extra time to call his big sister and tell me the awesome news.  I spoke with him again last night and he repeated some of the things he told me in the morning because he thought perhaps I was "a bit emotional."  Ya think?  It was a good thing he did because he was right, I heard what he said, I just didn't hear exactly what he said.

Okay, let me remind you of the miracle part of this.  There is only a 25% chance of a sibling being a donor match.  Now, Paul got his test kit first and his was the first tested.  What are the odds that the first sibling test kit tested would be a match?????  God has been listening to our fervent prayers and is seeing fit to be gracious and loving and grant us continued good news.

Initially, they were going to wait to get the results from older brother Don's results to see if he was a match as well and then choose between the two.  However, when I talked to Julie (see below) she asked  the ages f both brothers.  When I told her Don was 70 and Paul was 60, she said that age would very likely eliminate Don.  That being said, it sounds to me that Don is planning on coming to help with my after care when I get home from the hospital after transplant.  That will be a huge comfort to the kids and me.

The preliminary word is that the Transplant Team would like to have the transplant process start within the next month.  I should have a better idea of time by the end of the week. Julie, the Patient Care Coordinator will talk to Dr. Silverman, the head of the Team tomorrow or Friday morning and let me know on Friday.  The good Doctor has an incredibly full clinic schedule today.  Given how generous she was with me/us when we met with her, I have no problem waiting until Friday to get a better idea of a timeline. 

So, here I go being needy again.  I have some specific prayer requests:

• Prayers of thanksgiving for the incredible blessing God has granted me that Paul is a donor match.
• Pray that my blood counts don't bottom out again like they did last time so that I end up in the hospital;
• Pray that God provide for Paul's needs:  he needs to find housing before the end of the month; and he would really like and really needs new employment.  Unfortunately, where he is currently employed has a habit of cutting employee hours "over the holidays"  This year their holiday season starts next week and extends into February.  They've cut his hours back seven hours a week.  Living in southern California, that makes a huge difference in one's monthly budget.
• Pray that we can find funding assistance for his roundtrip airfare. I've gotten several leads from the American Cancer Society and will call them this afternoon.  Depending on lead time, the ticket could cost between $300 to $750.  It depends on knowing three weeks in advance or one week in advance.

I guess I should get in gear here and get ready to drive clear across town for a five minute appointment to get my neupogen injection.  But, Pr. Erika is stopping by with lunch when I get home so I'm really looking forward to that.  She said something about fresh tomatoes.  I've been looking forward to that since we spoke yesterday!

I can't thank you enough for your thoughts and prayers.  My faith in intercessory prayer continues to be confirmed.  May God richly bless you for your faithfulness.

 

I knew it was going to happen, I just didn't think it would be this soon! 

My blood counts took a nose dive between Wednesday and Friday.  I ended up needing two units of blood and an increase in the dosage of Neupogen.  That together with being told to stay out of the public and, if I had to go out, I HAD to wear my mask.  I cheated yesterday and went (with my mask on) to Hy-Vee and got my usual Sesame Chicken.  I'm still not tired of it and it is clearly adding the pounds.

Today I had to break down and ask for help.  Even with the two units of blood, I feel really weak and probably shouldn't have driven for my Neupogen injection this morning.  I took I-380 there but as wobbly as I felt walking in and out of PCI, I decided the back roads was the route to choose to go home.

Tomorrow I have arranged (and it was really hard to ask but I know it isn't safe otherwise) to have a personal driver.  My dear friend (and cancer survivor) Paulette will take me to PCI for a lab draw, to St. Luke's to have my Living Will notarized and provided to the Hospital and another document witnessed and notarized.  Then we have to go get my wig tried on again and texturized.  We all pretty much agree that there's way too much hair (fake) on the top right side.  Hopefully the wig will stay put better.  He was going to sew some small "snap combs" into it and hope that they won't slide right off of my baby fine, slick hair.  If I had my head shaved, it would probably be just fine but I'm just not ready for that yet. After that, hopefully we'll have time for lunch and then I have to go back to St. Luke's for cardio-pulmonary testing which is required prior to transplant.

Oh ya, back to needing help today.  I just don't feel safe being in the house alone and taking a shower.  I've already fallen once in the shower - pre-MDS diagnosis by a couple of years - and I'm pretty sure it would be a very bad thing to do it now.  I also need groceries and gas in the car.

Megan convinced me to have a bag packed with whatever I might need if Dr. B banishes me to the hospital again.  My platelets dropped from 92 on Wednesday to 23 on Friday.  If they continue to drop at that pace, I'm guessing she won't let me be home alone.  You probably guessed that my neutrophils (the infection-fighting white blood cells) also decided to jump off the diving board.

Having said that, I can't complain.  Instead I praise God that I don't have pain.  When I'm on chemo, there are a number of other patients who are clearly not well and in pain.  What gift I've been given in that regard.  That being said, please include me in your prayers especially over the next four to six weeks as the chemo does its job so that I can lead somewhat of a normal life and that my marrow begins making more normal cells as it did last time.  I don't think the percentage of blasts can get much better than 1% so hopefully I will recover faster this time.

Also, please pray that a donor match be found.  We should know in a week to ten days whether or not Don and/or Paul are a match.  Again, they are already searching the Donor Network to find a match.  If I could get started toward a stem cell transplant before my next round of chemo, I would be so grateful!  But, I am In His Arms and He is in control.  I continue to take one day at a time resting in the Lord.

Oh crud, my ankles are starting to swell again.  As usual, I've been sitting at the computer too long.  Needed to reconcile my checking account and the stupid bill I got from my cell phone company.  Don't know why they have to make it so darned confusing.

May God bless you as you journey through this week. 

Don't really want to end up here!

Here's The Answer!

After my appointment with Dr. B yesterday, the answer is "Don't get wiggy little Ms. Piggy!"

My blood counts have already started to drop which is to be expected.  The good thing is, because there are fewer blasts and the numbers were better to start with, she doesn't anticipate numbers as low as after the first round.  In other words, she's thinking I won't end up in the hospital again.  That being said, we are talking about me here!  I can tell my hemoglobin is dropping by my lack of energy and the fact that I didn't wake up at 5:30 in the morning yesterday or today.  I don't have scheduled labs until next Monday but I'm guessing that I may know I need a CBC run before then because my hemoglobin is low and I'll need two units of blood.

At this point, I will go in for weekly blood work and see Dr. B every other week unless I need to see her.  Other than that, we just wait.  If we don't find a donor match before the third round of chemo is to start, then I get to go through another bone marrow biopsy and then start chemo again.

So, dear friends and family, in terms of prayers, I ask you to join me in praying for the following:

My brother's friend Rick on palliative care and Rick's wife Sue;
Thanksgiving for the success for the chemotherapy after the first round;
The gift of family and friends;
For the individual whom I have placed In His Loving Arms and for the healing of that relationship;
That I find my jewelry; and
Most importantly, prayers of thanksgiving for the blessed assurance of eternal life through the death and resurrection of Jesus Christ our Lord and Savior.

Now What?

I hope that you all had a wonderful Labor Day Weekend.  My weekend was nice and relaxing - sort of!  I received my last two doses of chemo Saturday and Sunday so I'm done with that for now.  On Saturday I was able to join the Bogards at some friends of theirs (and mine) for lunch and a nice visit.  We left there and went to help Rick celebrate his birthday.  Matt was at a bachelors' party weekend so it was just the six of us for Dairy Queen Ice Cream Cake and Hawkeye Football watching. 

I left before the kids did because my stomach continued to bother me and I was very tired.  I'm feeling some better now and I think I'm going to blame it on the potassium pills.  I'm sure it isn't from the chemo because that didn't bother me at all last time.  Problem with the chemo and being tired is the stupid steroids.  I try to take an afternoon nap and it just doesn't happen.  I don't get to sleep until about midnight or later and am awake about 0600.  Hopefully that will change soon.  Then, of course, I'll whine because my hemoglobin is low and all I want to do is sleep!

I went for a walk yesterday and again today.  It was still a bit warm yesterday but today was absolutely glorious.  I turned the air conditioner off and opened every window in my condo and because of the low temperature and wonderful breeze, they stayed open until just a few minutes ago when I closed them - but not completely.  It's supposed to get down in the mid to low 50s tonight - maybe with open windows and all of that fresh air I'll be able to sleep.

I also did two loads of laundry, filled out some Long Term Disability forms and tried to "reconcile" some EOBs and medical bills.  Gotta watch the insurance company.  If I thought I could afford it, I'd like to start a business to provide advice and assistance to people - especially the elderly - in understanding their insurance benefits and payments in relation to their medical bills.  Also would advise them regarding secondary and tertiary insurance coverage.  I helped my in-laws when Rick's Dad was at Mayo - thank heaven!  They kept thinking they needed to send payments but everything was covered.  It's confusing and time consuming but worth watching.

Then I spent the rest of the day going through drawers and closets and purses and suitcases and everything and everywhere else I could think of trying to find my "insured" jewelry.  It's one of those chemo brain things but it is making me very nervous at this point.  When I was first banished to my condo, I was watching GMA one morning and they did a bit on home burglaries and where not to keep your jewelry.  Most women keep their jewelry in their bedrooms - typically in, on or around their dresser.  Yup, that would be me.  So, they had this expert - an ex-burglar - provide advice on other places that might be better.  So, thinking I should keep my oh so precious and oh so expensive (oh so not) jewels safe and sound, I decided to put them somewhere besides in my bedroom.  Well, guess what, I have no clue where I put them.  If you happen to know an honest burglar who could come and steal my jewelry and immediately return it to me, please let me know because I sure can't find it.  I'm still praying about it because that has always proven extremely helpful.  It isn't so much the monetary value of the stuff, it's a combination of that and the sentimental value that bothers me.  A couple of pieces mean a lot to me.  If you want to add my lost jewelry to your prayer list, trust me, I won't stop you!

Okay, so back to the title of my blog.  Now what happens?  I'm done with this round of chemo, the Transplant Team is searching the Donor Network for a match, my brothers are having their testing done and the kids and I are trying to schedule a Patient/Family/Caregiver Training Session on the soonest possible Monday morning.  I feel guilty just sitting around.  I know I'll have weekly blood draws and check-ups with Dr. Begum and another bone marrow biopsy at some point before anything else happens but other than that, I have no clue.  It's kind of hard for me to figure it out because I still feel really well - aside from the little stomach issue.  Lots of energy, maybe just a wee bit more bruising but nothing else.  It seems to me that I was already needing transfusions during the 10 days of chemo the first time.  But I guess then my counts were worse than they are now.  I guess I'll go downstairs and get out my notebook and write down some questions to Dr. B tomorrow.

I continue to offer prayers of thanksgiving for this period of the feeling of wellness and normalcy.  For having cancer, I am truly blessed to be pain-free and able to go about my daily life right now.

If I learn any important news tomorrow, I'll be sure and add to my blog.  If not, who knows.  If the weather is as nice as it was today, I may go for a walk instead!

I'm offering prayers of thanksgiving for all who are praying and thinking of me; for those who are calling and sending cards; and for the fact that you are holding me In His Arms.

God is Indeed Good

 

Friends and Family,

Lift your hearts and praise God for good news as a result of my bone marrow biopsy.  The most significant number that improved was the decrease in number of blasts in my marrow which dropped from 8% to 1% after just one round of chemo.  Rather than my trying to explain it, I'm inserting information from WebMD that explains what blasts are.  Hopefully, it will give you more insight into what exactly is going on in my system right now:

Myelodysplastic syndromes are a group of diseases in which the bone marrow does not make enough healthy blood cells.
Myelodysplastic syndromes are diseases of the blood and bone marrow. Normally, the bone marrow makes blood stem cells (immature cells) that develop into mature blood cells over time. A blood stem cell may become a myeloid stem cell or a lymphoid stem cell. The lymphoid stem cell develops into a white blood cell. The myeloid stem cell develops into one of three types of mature blood cells:

• Red blood cells that carry oxygen and other materials to all tissues of the body.
• White blood cells that fight infection and disease.
• Platelets that help prevent bleeding by causing blood clots to form.

Blood cell development. A blood stem cell goes through several steps to become a red blood cell, platelet, or white blood cell.
In myelodysplastic syndromes, the blood stem cells do not mature into healthy red blood cells, white blood cells, or platelets. The immature blood cells, called blasts, do not function normally and either die in the bone marrow or soon after they enter the blood. This leaves less room for healthy white blood cells, red blood cells, and platelets to develop in the bone marrow. When there are fewer blood cells, infection, anemia, or easy bleeding may occur.

Blast cells are immature cells found in bone marrow. They are not fully developed, and therefore, do not yet carry out any particular function within the body. In normal humans, up to five percent of the cells found in bone marrow are blast cells. When a higher percentage of them are found, further testing may be needed, as this is an indication of one of several disorders which affect the blood and bones.

Suggest Edits

Normally, blast cells continue to mature within the bone marrow and then begin to carry out set functions. White blood cells make up the immune system and attack and destroy invading bacteria and viruses. Red blood cells carry oxygen throughout the body and release carbon dioxide to be exhaled by the lungs. In a healthy person, these functions are carried out normally and efficiently. The problem begins when too many blast cells do not mature.

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When a higher than normal ratio of blast cells are found within the bone marrow a problem may exist. Leukemia is one of the most common blood-related cancers, and generally occurs when too many white blood cells remain as blast cells. Unlike normal cells, these mutated blast cells do not eventually mature and begin functioning within the body. They usually continue to be immature, and more are often formed at a rapid pace. This eventually causes a low blood count of normal cells.

Sorry if that was boring, but it seemed to be the best way to explain what's going on and why I'm so excited about the decrease in blasts!

I had gotten an email from UIHC yesterday saying new information had been posted to my online chart so I checked it out last night.  I thought I was reading the results for the blasts correctly but I wasn't positive.  I was cautiously optimistic - well, probably more than cautiously given the fact that I have worked around medicine and can kind of figure some things out on lab reports if I can compare things.  I printed out the reports and took them with me today when I went in for chemo.  Of course Dr. B was being interviewed on TV this morning and came in late and then was in with a patient for a half hour appointment when I was done with chemo so they said someone would call me this afternoon with an explanation of the results.  (Dr. B did call but it was after UIHC called.)

Because I'm feeling pretty chipper and have "roid energy," I was doing a bit of vacuuming with my cell phone in my pocket.  I thought I heard something but didn't feel the phone vibrate so I didn't stop immediately.  What a dummy!  I turned the vacuum off and checked for a missed call and, sure enough, I'd missed one.  Didn't recognize the number and not wanting to be an old lady about it, I didn't call the number back to see who was calling -- people do dial wrong numbers you know!  As I was looking at the number I got the ring tone indicating I had a voice mail message.  It was the Care Coordinator from the Stem Cell Transplant Team at UIHC calling to tell me about the lab results and asking me to call her back.  Um, ya, like that was ever not going to happen!

I called her right back and was as giddy as a - well, now days it would probably be a 12-year-old girl on her first date, sad to say.  I immediately asked her if she had good news about the blasts and she chuckled and asked if I'd seen the lab report online.  Heck yes I did!  She confirmed that the news was very good and that they have started the ball rolling already for the Stem Cell Transplant.

Don and Paul have both filled out and returned their medical forms and their test kits are supposed to be overnighted tonight.  That being said, because there is only a 25% chance that either of them would be a match, UIHC is already searching the Donor Network for other matches.

UIHC is wanting us to schedule a Patient/Caregiver/Family Training Session on the next possible Monday from 10:00 to Noon for even more details about the process before and after the transplant.  Down to the nitty-gritty of what to bring to the hospital, all of the possibilities - pro and con - of treatment and what to expect when released and during full recovery.

They are also wanting me get scheduled for cardio-pulmonary testing.  I told Julie I may have already gotten the cardio part done two weekends ago with my 48 hours in the hospital and the treadmill stress test.  We'll try to get those things done here in Cedar Rapids rather than having to go to Iowa City.

I was so excited I couldn't contain myself.  I cried for joy, I called Matt and Megan, Paul and Don, my Pastor and my closest friends to share the good news.  I had so much nervous energy that I had to do a bit more vacuuming between calls just so I could sit down and talk intelligently - well, intelligently for me anyway!

I find it interesting that last week as I was reading Pr. Erika's weekly blog, one of the texts for last Sunday was from Hebrews 12: 1-2.  For some reason it spoke to me and gave me a great deal of hope at a moment in time when I was feeling a bit lost and tired.  To some of you, it may not seem to apply to my situation at all but I will highlight what spoke to me as I read it.  To God be the glory:

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight and sin that clings so closely, and let us run with perseverance the race that is set before us, looking to Jesus the pioneer and perfecter of our faith, who for the sake of the joy that was set before him endured the cross, disregarding its shame, and has taken his seat at the right hand of the thrown of God.

The entire passage speaks to me but, the reference to "so great a cloud of witnesses" made me very aware of all of the wonderful individuals who are praying for me and thinking about me now.  What an awesome gift.  And to read the words "let us also lay aside every weight and sin that clings so closely" reminded me that I was trying to "carry" my cancer again.  I was also reminded that I had not been spending enough time in my own prayer and there were things for which I needed to repent in order to be right with God.  Again, what a gift.

And how about knowing that I can "run with perseverance the race that is set before [me] looking to Jesus the pioneer and perfecter of [my] faith." 

Our loving Father held me in His arms and through the Holy Spirit spoke to me in a very real and loving way.  The text provided encouragement but also reminded me that I have some work to do as well.  I need to let go and let God and I certainly need to pray for forgiveness.

Please pray for my family as we continue this journey.  We are having some conflicts with an individual helping out and being responsible and it has caused very hurt feelings, including mine and very angry and hurtful spoken words to me that I didn't deserve.  Pray for reconciliation because right now, I haven't let that individual know the good news about the lab reports because I'm too wounded by the words  and the feeling that I'm last on a list of priorities when the rest of the family, including Rick, my ex-husband, work so hard to do so much for me.

Thank you all again for your prayers.  God is hearing our prayers and generously answering them in an amazing way.  To God be the glory and into His hands I lay this "race".

Happy Piggy!

    
 Oh the wonders of medication!  Versed and morphine are awesome!  I had my second bone marrow biopsy done yesterday and it was a piece of cake!  As I said in my previous blog, I had it done at University of Iowa Hospitals and Clinics in Iowa City.  They used my new port for a blood draw and then I got my meds - orally, both liquids. 
 
As I sat there wondering how long it would take for the meds to kick in there was a bit of a bustle in my room and Megan and the kids were there.  It was all over!  We had to wait until I was "less consciously sedated" and then we were able to go home.  Megan had to work an evening shift and poor Rick (my ex) was the go-to guy again.  Megan wasn't comfortable leaving me home alone because I was supposed to have someone with me for 24 hours after I left the hospital.  It's a good thing he was able to come.  I thank God for him.  We may not be able to live together but we do care for each other and he knows I would do the same thing for him - or at least I hope he does.  I certainly tell him I would.
 
I don't remember leaving the procedure room at UIHC and I only remember parts of being taken by wheelchair to the valet parking area.  I sorta-kinda remember some of the drive home maybe but I don't remember coming into the house.  I do remember Megan telling me "Dad's coming over so we can leave."  Then I remember Rick coming into the house, Maddy and Megan giving me goodbye hugs and Rick telling me his timing was perfect because the Cubs game was on I probably wouldn't care anyway.  Boy was he right!  Again, I was out like a light .  The next thing I remember is him waking me to tell me he needed to go home to let Spot out and feed him and asking me if I wanted something to eat.  Being a true Glass, he didn't have a clue what he wanted to eat so he said he'd get whatever I wanted.  Sesame Chicken sounded awesome! 
 
By the time Rick got back, I was getting to be fairly lucid and once I started eating, I was fully recovered.  And, oh, lest I forget, the Dairy Queen is just across the street from the Hy-Vee store from whence cometh the Sesame Chicken.  Apparently that particular Dairy Queen has a huge magnet that pulls in only the make and model of his car and he had no choice but to get a cherry malt for himself and a chocolate malt for me.  As I understand it, all other individuals choose to go into DQ.  It is just the make and model of the vehicle he drives that gets "pulled into DQ!?!?!  I'm glad though because the malt was mighty tasty!
 
Back to the bone marrow biopsy.  I have to say that initially, post procedure, there was a little more hip bone pain this time.  The biopsy was taken from the left hip and my new port is on the left side.  Getting comfortable was a bit difficult once I was aware of my surroundings and my body!  But, I took two ibuprofen at lunch  today and the only time it hurts now is if I put pressure almost solely on that area.
 
And in other news, this patient has now had her first of potential ten chemo treatments.  The appointment had been made assuming that my blood levels would still be acceptable based on yesterday's CBC and they were.  Being pretty darn smart,if I don't say so myself, I took the lab results with me when I went in for chemo.  Dr. B was a happy camper.  The only level that was just a smidge low was my hemoglobin.  Well, my neutrophils aren't normal by any means, but they are above 1000 and that makes her very happy.  Now we'll just have to see how rapidly the counts go down to determine whether or not I will go through all ten treatments. 
 
As always, I'm not worrying.  God is in control and I am back at taking things one day or one bump at a time.  My youngest, Matt, said at one of our appointments when both he and Megan were there that I'm going to make it because "[they're] not done learning from me yet."  And the tears flowed.
 
If nothing else, I hope that I can be the kind of Christian witness to my family as my Gram Ahrens was to me.  Without her example and the work of the Holy Spirit through her, I most likely wouldn't have the faith and trust I have in our Loving Triune God.
 
Paul and Don have both received their paperwork.  I know that Paul has filled his out and faxed it back and that Don received his.  I haven't spoken with him yet today to see if he has return his papers.  I think, and they guys will know this for sure, once their papers are filled out, they will send out the test kits.  If there are any significant issues that show up in the papers they have returned, it may automatically eliminate them as a potential donor.  But what do I know, I'm just the needy donor!  Help me pray that, if of them is a match, that somehow we can obtain a grant from the American Cancer Society or from the Leukemia and Lymphoma Society to help pay for the airfare.
 
The piggy below is feeling the answers to your prayers and the love that I feel coming from you.  Your prayers keep me strong and focused on being cured of this crazy Myelodysplastic Syndrome which is a type of blood cancer.  I thank God for you daily and am sending the love "right back at ya" as Ellen would say (which, by the way, I don't watch).
 
May you have a restful weekend.
 
Peace, love, hope and joy!
 
Carol
 

News After My Appointment with Dr. Begum Today

Today turned out to be an interesting appointment with my Cedar Rapids Hematologist/Oncologist.  Not bad, mostly good and lots of interesting! 

Good news is my blood counts are almost really good!  Platelets are 174 - within normal range, neutrophils are 1620 - above 1000 - and hemoglobin is 9.9 - still a bit low but not below 8.  If it weren't for the fact that Drs. Begum and Silverman want to do another bone marrow biopsy NOW, I could have started chemo again today.  But they want to know how many blasts there are before my marrow and blood are affected by a new round of chemo.  I am having it done as an out-patient procedure at UIHC because I can have conscious sedation.  I just can't handle another bone marrow biopsy without it.  Call me a wuss if you want, but the biopsy is right up there with childbirth and all I get for it is a big bandage, a bunch of numbers and EOBs from BC/BS that will knock my socks off!  Megan will be going with me since I can't drive afterwards.  Dr. B did tentatively schedule a biopsy in her office for Thursday morning as well.,

Unless I'm told otherwise, I will then begin my second round of chemo on Friday.  We'll see how I handle the second round.  Today Dr. B was a little more optimistic that I'd make it through the full ten days.  Last week when my counts were still not that good, she wasn't sure I could handle a full ten days.

I had to call and make the appointment at UIHC myself.  That was a good thing for several reasons: 1) sometimes the patients get responses faster than referring physicians; and 2) Don and Paul still hadn't heard from the Donor Coordinator.  It's amazing to me how she could tell the Patient Care Coordinator that they were on her list to call last Thursday and said the same thing today.  This time she followed through because both guys texted me to let me know she'd called them.  I  think Julie is the person to contact if  I want something done.  I have a feeling if Dr. B's nurse had tried to set it up, she would have ended up talking to a scheduler and I wouldn't have gotten in this week.

It was a typical "Carol experience" though.  I promised Dr. B I'd have the valet bring my car around, go find a cool parking place and call Julie right away so that Dr. B could schedule something else for herself on Thursday morning.  So, I did just that.  Called and talked to Julie who said she was sure she'd get me in for a biopsy this week, she just wasn't sure when but I could tell Dr. B I was good to go at the U.  Julie told me she'd talk to the Donor Coordinator and get back to me this afternoon with appointment information.

So, as promised, I called Dr. B's office - from the parking lot - to tell them I would definitely go to the U for the biopsy so she didn't need to hold any time on Thursday.  Just as I was about to end the call I said, in my own smooth, prim and proper way "Oh crap, I still have my PPIC line in!"  You see, now that I have my port placed, I don't need the PPIC line anymore and it needed to be removed today because A) they didn't do it at the hospital when they implanted the port and B) because even if it was left in, the dressing had to be changed.  Nina called back to the "Fishbowl" which is what they call the chemo center to see if someone could take it out for me and, of course they could, because they were planning on it anyway.  I was just suffering from chemo brain - that or slightly low hemoglobin - take your pick because I'm certainly not losing my marbles at this point!  That's my story and I'm sticking to it!

It is dinner time and I actually want something to eat for a change.  And, by the way, do you have any idea how incredibly good a Burger King Whopper, Medium Fries and a Medium Diet Coke can be?  That was my treat to myself on the way home from my appointment.  I'm off all diet restrictions at this point!  Yahoo!  Normal food.  Salad, medium rare beef, fresh fruits and veggies.  I'd better enjoy them while I can cuz it may not last long.

Prayers of thanksgiving for my son Brian are in order.  He received a call today that he got the job for which he interviewed.  I'm really happy for him and he is very happy.  The Holy Spirit has been at work in his heart and he, as he said, has made his peace with God.  He is seeing the power of prayer in my life and has begun praying himself.  Thanks be to God!

Thank you for your continued prayers.  You are keeping me "In His Arms!"

Good Thing I'm Not a Real Writer with a Deadline - I'd be Jobless!

  Well, in all honesty, it wasn't just the party, it may have had something to do with having had a port inserted Friday morning under general anesthetic.  Because I have a high tolerance to medications, the doctor and I decided conscious sedation wasn't the safe way to do the procedure because if I "came too" while he was inserting the wire guide for the tubing and moved when he was near my lung, he could potentially puncture my lung. I was only in surgery for about 35 minutes and then in recovery for -- well, I really don't know how long.  Anyway, now I am less susceptible to infection than I am with the PPIC line and the port can remain in place until I'm cured.  Seems to me I may have told you the last part before but I'm not sure.

Matt, Joelle, her sister Julene, Brian and I all rode up to Maddy's birthday party together.  That was fun in and of itself.  We all have similar senses of humor so there was a whole lot of laughing going on round trip! 

The party was wonderful.  It was a Princess Tiana theme (Maddy's current favorite) and you should have seen the beautiful Princess Tiana cake Megan made for her.  Everybody assumed she bought it.  Scott was there to attest that he ate all of the cake she cut off to make the skirt and all of the extra frosting!

Maddy's two best friends from pre-school were there and her friends from two of the families that were in Scott's Guard Unit when they went to Iraq.  Poor Justin, even though his Mom told him it was going to be a "princess" party, he still wanted to be there - until after the lunch, cake and ice cream that is!  Fortunately, Jenny is a very wise Mom and had brought some of his books, coloring and sticker books along so he just went in the kitchen and did that while the girls did their thing.

Maddy was so cute as she was opening her presents.  Megan and Scott had gotten several gifts and they were all wrapped in the same paper.  The first several she opened were toys; all things she wanted.  Then she opened a box with two really cute dresses and she said "Oh clothes!" and dropped them on the floor to open the next present hoping it wasn't another set of clothes!  When she was all done, she went around the room and gave everyone a hug and said "Thank You."  And I do mean everyone!  What a sweetie pie.

Today I'm pretty sure I overdid it.  I finally cleaned the full bath upstairs.  It was driving me crazy and since I feel good now and have energy, I figured I'd better make hay while the sun was shining!  Well, I also dusted all of the furniture up here as well.  The bathroom probably took an hour - well, maybe it just seemed that long?????  After having Matt spend a number of nights here while working in the Cedar Rapids location so he could get more hours, the sink and mirror area were a disaster!  I teased him and asked if he stood straight up and spit out his toothpaste with great vigor when he was done brushing.  Good grief, there was "stuff" half way up the mirrorand it's at least four or five feet tall above the back splash on the counter top.  He told me it was his hair product.  I decided to go with that one - it didn't gross me out quite as much!  I must admit, some of the low-lying stuff could have been mine because I'm a flosser and somethings little things like sesame seeds will fly out so I can't blame it all on him - well, I could because I don't think he reads my blogs!!!!!

Tuesday I will see Dr. B again.  They will draw labs and then I'll meet with her.  Megan is graciously coming down because I think this could be an important appointment.  Dr. B seemed a bit concerned about things when I was there last time.  My little visit to the hospital for heart monitoring didn't make her happy and the fact that my neutrophils were still below 1000 was concerning as well.  In the grand scheme of things, by protocol, I NEED to start chemo again on Tuesday and it is scheduled.  I probably have shared this as well, but she doesn't think I'll be able to withstand the full 10 days of chemo because my numbers will go down quickly.  The way I'm feeling, I hope that isn't the case.  Problem is, I can tell when my platelets are low because of bruising and I can tell when my hemoglobin is low because I feel like cah-cah but I have no sense of what those darn neurtrophils are doing. 

I am at the point now where my hair is thinning.  It isn't coming out in clumps like it would with heavy duty chemo, but it is really getting thin.  So, the next project I need to accomplish before I get too run down from chemo is to get a wig.  I want to start wearing it now so Maddy gets used to it because I don't want her to be afraid of me once I do lose my hair.  I'll wear the wig whenever she is around. 

Well, dear family and friends, I continue to need your prayers as I am having an hour or so of a bit of pessimism occasionally.  I had a long talk with God today and feel better about a lot of things but your prayers are truly important right now.  I need to stay positive and fight this stupid Myleodysplastic Syndrome, stare it down and beat it!

I am actually hungry - which doesn't happen very often - so I'm going down now to fix something to eat.

I hope you had a great weekend and may our Loving Lord bless you as you begin a bright new week tomorrow.

Carol 

Very Quickly Because it's Almost 12:30 AM

Just a really quick note to let you know that I'm alive and doing as well as can be expected.

I promise to write more tomorrow when I get home from Miss Maddy Magoo's 4th Birthday Party.  Hopefully I can take a nap when I get home, fix myself something to eat for dinner and then remember which gmail account I use for the login for my blog so I can let you know what 's been going on most recently without spending an hour trying to figure out why I can't post :(

I can't believe my sweet Maddy will be four tomorrow.  She's such a grown-up four.  You know, one of those children who are intelligent and impish at the same time and they are four going on forty!  (BTW. who came up with the spelling of 40 as "forty?"  Were they just too lazy to include the "u" or what?)

On that philosophical (?) note, I'll bid you a fond good morning!  Have a wonderful and love filled weekend.

Carol -- the tired little piggy!

Another Bump in the Road

Well, dear family & friends, as Megan put it, I was me being me again & ended up in the hospital from Friday afternoon to Sunday morning!   I tell ya, I just can't get along without that awesome hospital food.  Oh so NOT!  And this time it was even worse because I was on a "heart healthy" diet.  Seriously,  I didn't think bad food could be made even worse! Well, it is possible.  The option I'd had of making some foods more palatable with a touch (and I do mean "touch") of salt or some butter was totally eliminated.   I mean really people, who eats a half of a DRY baked potato with one little itty-bitty container of Healthy Spread a/k/a margarine and Original Mrs. Dash?  Okay,  I can almost handle Mrs. Dash in a crockpot pot roast but on a DRY baked potato with a tiny bit fake butter?   No thank you please!

And now for the reason for the crappy food.  I could tell on Thursday when I had an appointment with my Oncologist / Hematologist that I was a quart low (in need of two units of blood) so I wasn't at all surprised to learn that my hemoglobin was low.  Since it was early afternoon, I could get only one unit of blood and was to be back on Friday @ 10:00 for the second.  The next morning I had come downstairs to take my morning meds, and washed the growing pile of dishes in the sink.  (In my defense,  not all my fault.  I hadn't had enough energy to put away the dishes in the dishwasher & my truly wonderful youngest child isn't really excited about doing dishes.   If they're rnsed out and in the sink, that's good enough for him - apparently no matter how high the stack gets in the sink.)  But again, I digress.  I finished the dishes and glanced at the clock and realized that I needed to hustle buns to get to the Infusion Center on time.  I went upstairs - possibly a bit more quickly than usual - and by the time I got to the top of the stairs my heart was pounding.   I went into my bedroom and laid down for about four or five minutes until the pounding stopped.   I finished getting ready and left for the hospital.   On the way there, I started feeling chest pressure - it was the classic symptoms.   I decided I wasn't going to tell anyone but as Jeremy was starting the transfusion, I was feeling the pressure so I told him.   Bad idea!  Probably good in the long run but......

I was quickly taken down to the ER.  Having worked in the ER, I knew one of the blood tests included checking the triponin - an enzyme that is produced if the patient has had an MI (heart attack).  Of course,  mine was elevated.  That means they have to do another test in two hours.  Rats!  It went up even more. So the cardiologist determined that I needed to be admitted and monitored for 48 hrs and I needed a stress test on Saturday.

I was more worried about my legs holding out for the treadmill than anything related to my heart.   Oh my goodness!   Can you say very weak hamstrings and knees.   Gee whiz peeps,  I'd only been out of the hospital for a week & was starting to feel like my feet were under me.  But, I PASSED WITH FLYING COLORS.

The cardiologist isn't really sure what may have caused the symptoms but I appeared to have a healthy heart.  When I texted my my immediate family,  Megan texted back to double-check that the doc really didn't have any answers and completed her query with "or is it just you being you?"  Yup, my wonderful and wise daughter,  it was just me being me!

When it comes to medical issues,  I rarely do the normal thing.

We met with the Transplant Team at UIHC last Wednesday & Dr. Silverman is saying that we need to get things rolling sooner as opposed to later.

I met with Dr. B today after my lab draws.   Believe it or not, my platelets are now in the normal range.  Unfortunately,  Myleodysplastic Syndrome is really taking a toll on my neutrophils - the infection fighting white blood cells.  I have received the maximum amount of Neupogen injections at this time.  I will have lab draws again a week from tomorrow & if my neutrophils have gone from 780 to 1,000, she will have me start the second round of chemo.   Her thoughts and concerns at this point,  based on the fact that only my platelet count has really made significant "progress," she doesn't think I will be able to withstand the full ten days of chemo.

At my appointment with the Transplant Team, they did swab me for matching & will contact my brothers, Don and Paul to arrange for their match kits.

I continue to feel your prayers at work.   Please don't stop now as things seem to be getting a bit dicey.

Also, please keep Richard in your prayers as he moves from this life to his heavenly reward.  Please lift up his wife, Susan, as she works through this.  She is emotionally and physically exhausted.

If you're still awake,  I ask that our Lord and Savior,  Jesus Christ, be with you each day in a very special way.

Nightly-Noo-Noo

Just a Quick Note On My Tablet

I'm going to scream!  I was going to go back to the beginning of my original blog to proofread it and instead it went poof & disappeared!  This Tablet is going to drive me to drink!

Rather than redoing it all (and it was oh so well written), I'll just say that I was pretty sure I was a quart low when I went in for my Neupogen injection so I asked if they'd run a CBC.   Since they know I know my body so well, they did just that.  My hemoglobin was 7.2 so after my injection I went over to the Infusion Center for the first unit of blood and will go back tomorrow for the second.

I'm sorry this is so short.   I should have more energy tomorrow and can use my computer.   Until then, may God grant us all a night of refreshing sleep and bless our day tomorrow !

Carol

I'M HOME!

Family and Friends,

I'm so sorry it has taken me four days to share the good news.  I am HOME!  I was discharged on Saturday but went with the kids to Rick's house for dinner because his brother, Ron, was home from San Francisco and I thought that might be the only chance I might have to see him.  By the time I got home, I was too exhausted to even turn on my computer!

Sunday I did three loads of laundry and spent four hours on the computer dealing with finances and office email.  I way over did it.  That meant on Monday I was wiped out.  My friend took me to get my neupogen injection and blood draw.  Platelets were going in the right direction. (54) but hemoglobin was dropping a bit.  Biggest concern was that my neutrophils had dropped to .02.  Very, very bad.  I now have to wear a HEPA mask whenever I'm in public places and wash my hands, wash my hands, wash my hands, and wash my hands some more.  I will also need to go in every day this week for neupogen injections in an effort to boost that number.  Dr. B significantly increased the dosage and that seems to have helped.  She also added ANOTHER antibiotic.  So now I'm taking three antibiotics plus an antiviral every day.  One of the antibiotics I only take on Monday, Wednesday and Friday.  My kitchen counter looks like a pharmacy.

We met with the Transplant Team today.  First was the blood draw.  I think I'm probably a pint low now.  Holy buckets, they drew six or seven tubes.  Thank goodness I have a PIIC line!  Then we met with the Care Coordinator (I think that's her title).  I had talked to her on the phone several times and she is even more awesome in person.  She spent at least an hour with us going into great detail of every aspect of the transplant process from testing for a match to what I will go through prior to the match clear through recovery.  She gave us all of the potential risks or complications that can occur and which are treatable and which are not.  Thank heaven Joelle was there to take notes.  They wanted (and received) Don and Paul's phone numbers.  Don and Paul are my older and younger brother respectively for those of you who don't know.  They will contact them about getting tested for a match.  It would be great if one of them is a match especially since I have issues with platelets.  Those extra antigens complicate things just a bit so it will make it a bit harder to find a match from the Donor Network.

Then we met with Dr. Silverman.  What an incredible woman she is.  I don't think I could ask for a better care team.  I am truly blessed.  God has provided me with excellent and very caring physicians and their staff.  Dr. Silverman is on board with the transplant and wants to go through with it sooner as opposed to later.  She wants to do this before it becomes leukemia.  She was thinking possibly as soon as after my next set of  chemo.  But, time and lab reports will tell.

I continue to be held in our loving Father's arms and it is because of your prayers.  I couldn't do this without them.  I have to admit, I'm not so good about praying for myself; I'm better at praying for others.  That's why I know it all of your intercessory prayers that are keeping me in His arms.

Back to my condition.  The really good news, as far as I'm concerned, is that I can drive again - with Dr. B's approval!   I'm so excited.  Of course, I can't really go anywhere cuz of the nasty cooties everybody carries around on them and might want to share with me.  Speaking of "cooties," wasn't there a game back in the stone ages when we were young that was named Cooties?  But I digress.

So that I don't appear totally selfish, I have several other prayer requests:

Prayers for my oldest son, Brian, that he will be given the job for which he interviewed yesterday;

Prayers of thanksgiving for my two younger children, Megan and Matthew, who recently got new positions.  Matt's is not in his degreed area, but it is much better than what he was doing.  Megan will be doing a part-time management position at a different care center in Cedar Falls.  She will work 20 hours per week and has been allowed to set her schedule.  Praise God!

Prayers of thanksgiving for my wonderful Pastor and congregation at St. John.  They are providing meals every other evening and they are enough for lunch the next day and then some.  Pastor is also going to recruit some of the older youth group girls to clean for me.  I got exhausted just cleaning the stools - one at a time on two different days.  Sad but true.

Continued prayers for Rick and Susan.  Rick's cancer is consuming his brain almost at warp speed.  Susan is totally exhausted.  Pray that God's will be done and that He provide Susan the strength she needs to get through this very difficult time.

Thank you again for your prayers and thank you so much to those of you who have sent cards.  I appreciate them very much.  It is so nice to get something in the mail other than junk mail and bills!

I will try to be more faithful about posting my blogs.  I have to tell you, eight nights in the hospital really takes a toll.  I still can't remember for sure what day of the week it is - yah, I know, "and that's different from before how?"

May God bless each and every one of you in ways known only to Him.

Carol

May not be in Room 537 much longer!

Okay this is the third time I've started this blog.  To say I'm frustrated is a total understatement.  The problem is I'm afraid it's going to get shorter every time I have to redo it.

Thank you all for of your prayers.  They are certainly working.  My platelets are up to 19 and my hemoglobin is up to10.4.  The only thing Dr. B is worried about is my neutrophils; they are going slightly down.

The good news is she said I might be able to go home tomorrow.  And I do stress the word "might."   PT came in this morning and got me up and walking with a walker and I was able to walk to one end of the hallway and back and then I rested a bit and walked down to the end of the other hallway.  It felt good to be up and walking but I must admit that my knees were getting wobbly and my thigh muscles were letting me know they hadn't been used for a while.  It may not be exciting to you but after being on bed rest since Friday evening I almost wanted to do a happy dance.

The other big news is that Dr. B told me yesterday that I wasn't going back to work.  I'm not quite sure how I feel about that.  She told me I needed to rest and not worry about work.  Easy for her to say.  The problem is no one else knows how to do what I do.  My supervisor knows some of what I do but not all of it and the parts he needs to know doesn't know are pretty critical.  Sometimes I wish I didn't worry about our students so much.

I'm sorry this is so short but I don't want to have to redo it a fourth time.  Your continued prayers are much appreciated and I ask that the Lord richly bless you for all of the prayers you have already said.

TTFN as Tigger would say,

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