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.