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.

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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,