Saturday, December 11, 2010

Home Again, Home Again

We were able to move from our apartment to another Home Away From Home apartment that was only about a block away.  We packed the car in such a way so we could unload only what we needed for one night.  A group of about 20 middle school kids from The Little Rock Church which sponsors the Home Away from Home program came by caroling Sunday night.  They also gave us some coffee mugs with Christmas goodies.  For us being able to use the two apartments was our Christmas gift.

Carla met with another myeloma doctor on Monday and detailed the maintenance plan.  The doctor thought Carla's blood tests showed she was ready to be dismissed.  Carla tolerated the trip home even though we were delayed just north of Clinton, AR for about an hour due to a four fatality car wreck.

Miss Kitty welcomed us home.  She stuck close to us as she had been home alone for just over two weeks.  Carla gained strength each day and Tuesday night settled in the recliner to attempt to crochet another hat.  Missy Kitty attempted to get as close to her as possible as shown in this picture.


Carla asked her primary-care doctor on Wednesday to remove her stitches.  This doctor got back with us on Friday and notified us that she would not remove the stitches due to liability concerns.  Carla's oncologist could not tell us if he could take them out as he was out of his office until Tuesday.  Finally we went to the Urgent Care and got the stitches removed.  Her incision is healing nicely.

Carla will meet with her Springfield oncologist this coming week.  They will line out the dates and times for her maintenance.  Basically we hope to have the Revlimid drugs delivered to her home by December 20.  She will take the Revlimid pills for 21 days and then not take them for 7 days.  During each 28 day cycle Carla will get an infusion of the drug Velcade at the oncologist's clinic.  She will take dexametasone pill each day she get Velcade.  She will have to get her blood tested each week before they can give her the Velcade.  While taking the Revlimid she will also take daily aspirin to ward off blood clots. 

Basically this will be the maintenance schedule for the next three years.  The Velcade infusions can be weekly plus or minus 1 or 2 days.  This will keep Carla tethered and limit our trips to not more than a week as she needs to get the Velcade in Springfield.

The Myeloma Clinic will need Carla to return to Little Rock every three months for PET scans and bone marrow biopsies.  This means we don't have to return to Little Rock until the end of March, 2011! 

Saturday, December 4, 2010

Doctor's Appointment Moved to Monday!

Carla got a good report from the infectious disease physician and we have worked with a research nurse to enable Carla to be seen by a Dr. Waheed on Monday instead of waiting for Dr. Barlogie on Thursday.  Dr. Waheed is one of the newer doctors in the Myeloma Institue.  The research nurse got Dr. Barlogie to approve this move.  Carla is scheduled to see Dr. Waheed at 11:00 Monday.

We have been monitoring Carla's blood results.  The CRP level can be an indicator of possible infection.  Yesterday's CRP level was down to 13 with the normal range being 0 - 10.  Yes, it was slightly elevated but I think it will be back to normal by Monday.
We have to clean our apartment and move out by 2:00 p.m. tomorrow as the patient we have been sub-leasing from will be moving in at 2:30.  Home Away From Home did have a patient move out of another apartment.  This patient has kept the apartment rented during their brief trip home.  We plan to move into that apartment tomorrow afternoon and sub-lease it by the night.  We hope we can head home Monday afternoon.  If for some reason we still have to stay longer, we can still have a comfortable place to stay.

Monday, November 29, 2010

Little Rock Stay Extended

We were unable to control Carla's pain with the meds prescribed on her hospital dismissal.  We called the surgeon's office and talked to one of his residents.  Basically they said they weren't responsible now that she was out of the hospital.  They wanted us to contact her primary care physician back in Springfield.

We saw Dr. Barlogie this afternoon.  Once he saw Carla's condition, he wouldn't talk to us about myeloma maintenance.  He said she should not have been dismissed from the hospital.  He told her to take oxycodone for break-through pain and he got her an appointment with the pain doctor in the Cancer Center tomorrow morning.  He is trying to get her an appointment with an infectious disease doctor as he was concerned about her CRP being so high and her blood counts so low.  He wants her to have blood drawn daily so they can monitor her better.  He doesn't want us to leave Little Rock until after we see him on December 10th.  If she is better then, he will talk about maintenance.

Now we have to wait and see how this week progresses and see about where to stay once our sub-lease expires this Sunday.

Sunday, November 28, 2010

Dismissed from the hospital

Carla was dismissed from the hospital this afternoon.  She is now settled into the bed in our apartment.  She still has a lot of pain but seems to be doing OK.  Hopefully she will be able to make her 2:00 appointment with Dr. Barlogie.  I am going to attempt to get it cleared at the clinic ahead of time so she can be wheeled directly to the top doc and not have to spent time in the waiting room.  Dr. Barlogie told us to do that this time.

Carla was coughing up some mucus tonight and I feel like I am coming down with a cold.  Hopefully a good night's sleep in the quiet apartment will help both of us.

Thursday, November 25, 2010

Happy Thanksgiving

As we reflect back on this year, there are so many things for which we are thankful.
a.  For our many family and friends who have support us as Carla has gone through this myeloma experience.  Your thoughts, prayers, friendly phone calls and uplifting words have meant a lot to us.
b.  For the great doctors and researchers who have persevered in their hunt for a cure for this terrible disease called multiple myeloma.  Dr. Barlogie is leading this charge.  We are thankful that the Myeloma Institute is within driving distance from Springfield.  Many of the myeloma patients and their caregivers have to fly to Little Rock for each of their sessions of therapy and for their many checkups during maintenance.
c.  For Home Away From Home apartments for which we have been able to use for all of the chemo treatments but one and during this stay for Carla's surgery.  It makes me wonder what needs are in our community back home that need to be addressed by us.
d.  For God's sustaining strength as Carla "walked in the shadow of death" during each of her six chemo therapies and stem cell transplants. 
e.  For good medical insurance that has spent upwards of a million dollars on Carla's treatment.

Update on Carla's condition:
Early in the week it seemed like they could not control Carla's pain.  Tuesday evening they installed a morphine drip and a couple pain pills besides her oxycotin she has been on since her August 2009 back surgery.  Once the pain subsided, Carla was able to get her badly needed rest.

Wednesday she was able to get up and sit in a chair a couple times.  This was a good break from the bed.

Tuesday night her temperature went up to about 100.5 and stayed there for about 24 hours.  It is only slightly elevated now.

If they can get her off the morphine today there is a good chance she can be discharged to our apartment tomorrow.  If not Friday at least by Saturday.  She has an appointment to see Dr. Barlogie at 2:00 on Monday.  We plan to head home whenever we determine Carla is up to the four-hour trip.  We have the apartment rented until December 5.

I thought I would share a couple pictures with you.  Carla lost her hair during Induction 1 the first of December 2009.  Since the completion of her chemo the first of September, her hair has returned.  The myeloma patients are always concerned about what color their hair will be when it returns.  You can see a red tint to Carla's hair.  The scab on her scalp was where a needle sensor was inserted during her surgery to monitor her brain signals. 

Carla is on the eighth floor of the "new" hospital.  Her large east window looks down Capitol Street.  The tall tower on the left is the new Rockefeller Cancer Institute.  This is building houses the Infusion Center.  During each chemo sessions Carla would go to the Infusion Center each day for her blood draws and any necessary IV's or blood transfusions.

The tall building on the immediate right is the Eye Institute.  The next building on the right is the Spine Institute.  This building houses the Myeloma Institute.  Dr. Barlogie's office is in this building as are all of the MIRT physicians.

Far down the street that runs by the Spine Institute is the Arkansas Capitol building.  It is near the two tall buildings in the background.  This is a nice view at night.  I thought I would get a picture of the lighted Capitol but the last two evenings have been too stormy and foggy for a good picture.

Here's wishing you a very Happy Thanksgiving!

Monday, November 22, 2010

Surgery

We reported to the UAMS Hospital at 5 a.m. only to be told Carla was an "add-on."  Nobody could tell us what that meant only that she was not scheduled for surgery.  About 7:30, the surgeon's nurse came and told us that in preparing for the surgery the surgeon had deemed the June CT scans to be outdated for a myeloma patients whose bones grow and change rapidly.  So Carla was rushed for a CT scan and then went to the OR about 11:00.  She was in recovery shortly after 2:00 and in a private room shortly after 5:00.

The surgeon said he removed the rod from her back and replaced it with a longer one.  The rod extends from vertebrae T5 down to T11.  He also attached bones to the existing vertebrae. 

Carla is resting comfortable now that she has her does of pain meds.  I probably will leave if she seems settled for the night.

Friday, November 19, 2010

Surgery Update

Carla's surgery is scheduled for 7:00 a.m. Monday at the UAMS Hospital in Little Rock.  She is to check in at 5:00 a.m.  We plan to drive down on Sunday and take the westerly route through Centerton, Arkansas.  We will have lunch with my son John, his wife Lauren and their soon-to-be year old daughter Olivia.  It is longer to go this way rather than highway 65 but it is four-land all the way and it is less hilly.

Praise the Lord!  We received a call yesterday from Home Away From Home.  We have an apartment that that we can get this Sunday and cane stay as late as December 5th.  Another myeloma patient has it rented but is going home on break and wanted the apartment when they returned so they are subleasing it to us!

Monday, November 15, 2010

Spine Surgery Scheduled for Monday, November 22

Carla's back surgery is scheduled for Monday, November 22.  We plan to drive down on Sunday.  This surgery is to repair the loose screw holding the bottom of the rod used to fuse the two vertebrae above T7 with the two vertebrae below T7.  The T7 vertebrae is the one that was partially removed in her August '09 surgery.  Likely the surgeon will remove the rod and insert a longer rod thereby fusing more vertebrae together. 

The loose screw is dangerously near Carla's spinal cord.  This surgery will remedy that problem and hopefully it will make her back be more comfortable with less pain.  Hopefully the pain meds can be reduced.

The surgeon thinks Carla will be in the hospital about five days and he wants her to stay in Little Rock for a week after surgery.  We may be able to sub-rent one of the Home Away from Home apartments or stay in a motel.  Hopefully her hospital stay will not be extended due to Thanksgiving.

Tuesday, October 26, 2010

Surgery Is Delayed

We just received word from Dr. Pait's office in Little Rock that Carla's scheduled spine surgery has been postponed due to the influx of trauma and critical myeloma patients who are currently in the hospital.  We don't know when they will be able to schedule it now.  Their schedule for surgeries for next week is full.  They hope to give us at least a day's notice due to our four-hour travel time.

Pray that she can get scheduled soon and won't have to repeat the pre-op tests she had completed when we were down the first of October.

Stay tuned for further developments!

Monday, October 25, 2010

Upcoming Spine Surgery

We have enjoyed our time back in Springfield but is\t is about time to head back to Little Rock. We spent October 4-6 in Little Rock where Carla underwent a PET scan, MRI scan, blood tests and pre-op tests. Her PET scan showed no active lesions. The MRI showed that the 50+ lesions she had are getting smaller. The blood tests showed no myeloma components!!!


We will return to Little Rock this Thursday, October 28th, and Carla is scheduled to have the surgery on her back on Friday at the UAMS hospital with Dr. Pait as the surgeon. Dr. Pait thinks he will have to take the rod out that was implanted August 2009. This rod fuses the two vertebrae above T7 with the two below T7. T7 was the vertebrae that was practically devoured by the multiple myeloma and was pinching the nerve last summer. They probably will implant a longer rod and hopefully the screws will hold now that Carla's bones are stronger and denser.

The doctor anticipated Carla would be in the hospital about five days and he wanted us to stay in the Little Rock area for another week. As yet, we haven't been able to locate a reasonably priced furnished apartment we can rent for two weeks. We are on the waiting list for Home Away From Home but it looks like we will have to stay at a motel. Last summer, Carla found our recliner to be very comfortable as she was recovering from surgery. I hope to get it loaded in the Highlander so we will have it if she wants it.

The doctor has not claimed that the surgery will decrease her pain... only that he hopes it will. He is primarily concerned with the loose screw that is very near her spinal column. Please pray that the surgery will correct this problem and that she might be free from the pain and off her Oxycotin!

Carla had all the tests that needed to be done before she starts her maintenance phase. The Myeloma Clinic plans to see Carla just prior to our returning to Springfield. They will give her about a month to recover from surgery and will commence the Velcade and Revlimid about the first of December.

Friday, September 10, 2010

Carla's Back

We got back to Springfield on August 30 but returned on September 2 for a consultation with the UAMS neuro-surgeon, Dr. Pait.  Basically the CAT scan revealed that the rod in Carla's back has shifted and the bottom loose screw is dangerously near her spinal column.   

We returned to Springfield on September 3rd to wait for Carla's blood to recover from the consolidation #2 chemo.  We expect that to take until the first of October.  Dr. Pait said the surgery would probably require her to be hospitalized for five days and he wanted her to stay in Little Rock another week. 

We haven't talked with Dr. Barlogie about her surgery and what she will need to do if she postpones the start of maintenance until December.  That will need to be determined.

Carla's blood tests yesterday showed her white cell count had only climbed back to 2.1 which is still quite low.  Her red blood count is somewhat low. 

Carla doesn't feel up to much travelling so it looks like I will make a quick trip to Nebraska to retrieve our cat from my sister who has been caring for her since the first of January.  Thanks Karan!

Monday, August 30, 2010

End of Consolidation #2

Carla is getting her line out and we will be heading home this afternoon.  She has done extremely well during consolidation #2 with few side effects.  She has an appointment this Thursday with the neurosurgeon, Dr. Pait.  We plan to drive back early Thursday, meet with Dr. Pait, have her blood labs drawn here and spend the night at our Little Rock apartment before heading back to Springfield.

Carla meets with Dr. Pait to see what he recommends about her back including possible corrective surgery.  Carla is scheduled to return to Little Rock in 4 to 6 weeks to have tests done before starting on her maintenance phase.  Most of the maintenance therapy can be done in Springfield.  Dr. Barlogie will help schedule the surgery if it is deemed necessary.

Carla's platelete count was coming up yesterday but at 32 it would not be above the minimum 50 required for line removal.  Carla convinced the APN nurse to let us come back last evening for a bag of platelets rather than have to work them into today's schedule.  Because of this foresight it looks like we will be ready to head out of here before 3:00 today! 

Saturday, August 21, 2010

Consolidation #2 Update

Carla has been progressing about as we expected. She had the black bag with the two IV pumps Saturday through Wednesday. At the new Cancer Institute infusion center they basically have not had us stay for the results of the lab tests but will phone us to come back later that day if there are problems that need to be addressed that day. Carla has the normal constipation and other digestive side effects but she has not had the mouth sores or loss of appetite yet.

She has been very careful to not get germs from the other patients. She puts on a glove and uses a disinfectant wipe to clean off the arm rests in the waiting room. She does the same thing when she gets in the infusion center. The chairs in the infusion center are supposed to be disinfected between patients but Carla isn't taking any chances.

Carla got the black bag off Wednesday and  Thursday they started the growth factor shots. Today they stopped giving her the Lovenox blood clot preventer as her platelet count was dropping and the risk of blood clots was decreasing. Generally the white blood count bottoms out about day 10 with days 7 - 10 being the worst. Well today is day 8 and Carla's energy level has decreased.  Due to the growth factor shots her white cell count rose to 13 yesterday.  It will plunge soon.

I mentioned last time that Carla is being treated in the Winthrop P. Rockefeller Cancer Institue that opened August 1.  This is a seven-story tower that houses most of the outpatient services for cancer patients.
Cancer Institue Main Entrance
This is the main entrace to the building with its valet service.  We park in the parking garage instead.
Parking Garage and MIRT Building
The above picture was taken looking outward from the Cancer Institute.  It shows the parking garage.  The tall building down the street from the parking garage is the Spine Institue.  This is the building that houses the Myeloma Institue Clinic (MIRT).  This is where we go when we see the doctors.
Biomedical Research Center
I rotated on around and took this picture of the Biomedical Research Center.  This is where most of the research concerning Multiple Myeloma is conducted.  We have not been in this building.
Entrance From Parking Garage
This is Carla in front of the patient entrance from the parking garage.  The parking attendants in the first picture were just to the left of this photo.
Carla In The Waiting Room 
The Infusion Center for myeloma patients is on the fourth floor.  I hear there is another Infusion Center on the first floor but we have not been there.  When we get there, Carla has to sign-in at the desk at the back of this picture.  The patients usually take the chairs with the tall backs and the caregivers sit beside them.  Carla is in the center of this picture with her mask on.
Part Of Infusion Center Waiting Room
I took these pics on a Friday and it was a slow day.  The waiting room is generally about 90% full.
a
Eating Area and TV Area of the Waiting Room
The actual Infusion Center first has an area where patients are weighed and temperature is taken as they enter the Infusion Center.  Patients are assigned to one of three areas depending upon their condition, the results of prior tests and what they need today.  When Carla got her black bag and had it serviced she was it what are pods.  Each nurse is responsible for a specific number of pods.
Pods With a View
Each of the pods had a TV monitor, a comfortable chair and a blood pressure/temperature instrument.  The assistant that calls the patient in the waiting room takes all measurements before the nurse comes to collect the blood samples and administer any IV's that may be necessary.  If there are problems, an APN nurse is summoned.  Each patient is assigned to a specific APN nurse.
Other Pods Showing Patients, Caregivers and Nurses
In walking to a pod we discovered that one side has private rooms for patients who can't sit in chairs and need to be in bed.
Private Rooms for Critically Ill Outpatients
Since Carla got the black bag off, we discovered there were a limited number of areas referred to as "Rapid Injection" areas.  These do not have as comfortable chairs and most patients are there for drawing blood samples.  I imagine that when Carla's WBC drops below 2, she will again go to a pod in case she needs IV's of sodium or potassium or she needs blood or platelets.
Carla Having Blood Drawn in "Rapid Injection" Area
Hopefully this give you an view of the new Cancer Institute at the University of Arkansas for Medical Sciences.

We learned this week that a church has purchased the Senior Apartments where we are staying this trip.  They plan to turn it into a transition facility for criminals.  The none UAMS patient residents now have to find a new place to live.  Myeloma patients starting their treatment had planned to stay here during all of their treatment.  Those of you following Carla's treatment know this usually lasts for 10 to 12 months.

I also saw the auto body guy from Hope, Arkansas who wife got the upper lung infection and was in ICU.  She is now out of her coma, out of the ICU but still in the hospital.  He said today that things were looking up.  Her hospitalization is approaching a month.

Friday, August 13, 2010

Consolidation #2

We returned to Little Rock on Monday.  We were hesitant as we weren't able to get another apartment with Home Away From Home.  We did get an apartment at Hidden Creek Retirement Home.  This is a small furnished apartment at a former nursing home.  The apartment is smaller but so is the rent.  We don't have Internet access there so I have to use the Internet while at UAMS.

Tuesday she had blood tests and that dreaded bone marrow biopsy procedure.  Wednesday it was an MRI and then wait for the results.  Yesterday was our appointment with Dr. Barlogie.  Our appointment was at 1:30 but it was after 6:30 when we got out.  They had failed to order Carla's Thalidomide.  At our July discharge, We had warned the doctor that we only had enough for two days and she needs four days of Thalidomide for the Consolidation.

Basically they faxed the prescription to CareMark and I periodically called them.  Today I got notification that it will be shipped overnight and I will have to stay at the apartment from 8 - noon tomorrow to sign for it.

As a result of the delay at the doctor's office yesterday, Carla couldn't get her line implanted in her chest yesterday.  She is getting the line put in now but won't be able to get the black bag with the two IV pumps until tomorrow.  This means were are getting a day later start to her chemo but her meds should be here as she needs them.

I did note that they failed to get us the prescription for the dexamethsone that she takes with the thalidomide.  I am attempting to get that phoned in to Walgreens so she will have it in the morning.  We have found you have to really check on what is done to make certain that nothing has been omitted or that the wrong meds/IV's have been given.

The treatment is in the newly opened Winthrop Rockefeller Cancer Institute.  Both the Infusion Center and 7C are now combined into one location.  The Blood Draw and MRI are also in the new tower.  I will try to post some pictures in a later blog.

One lady from Hope, AR that we shared an infusion room with several times is in ICU with a lung infection.  She has been in a comma for at least 12 days but appears to be improving.  Please remember to pray for her.  We are taking special care to prevent infections as Carla's immunity goes down hopefully for the last time.

Friday, July 16, 2010

Home July 6th

Sorry for not updating this blog when we got home on July 6th.  When we are home my schedule changes and I forget about giving you an update. 

Carla's white cell count kept dropping when we got home.  It was 1.99 when we left Little rock and then dropped to 1.68 on Thursday and 1.51 on Monday.  We were concerned and kept contacting the Myeloma Institute.  They told us to wait before getting any growth hormone shot.  Thankfully it was up above 2 yesterday.

Carla has been feeling stronger and has decided she had had enough of my 10 months of attempts at cooking so she has started fixing some of our meals.  She still is tired some and attempts to work in a two-hour afternoon nap. 

We are scheduled to start Consolidation #2 on August 10.  This should be the last therapy before the three-year maintenance.

Friday, July 2, 2010

Disappointment

Dr. Barlogie approved Carla's getting the CVL line out today once her platelets were over 50 and then leaving tomorrow if her blood tests were OK.  But things have changed.  I knew they would have to draw blood, get the results, determine if she needed platelets, order platelets, administer platelets, draw another blood sample, wait for test results, see if she needed more platelets.

So, I dropped Carla off at the infusion center about 9:00 and went back to clean the apartment so it wouldn't take much to get it ready to leave tomorrow.  Carla called me once they got her blood results back and her platelets were down to 15 and her red blood cell count was critically low as was her hemoglobin.  She was questioning if she was really well enough to leave.

I took her lunch about 1:30 and eventually it was decided to spend the weekend in Little Rock with her going to the infusion center each day.  Hopefully her blood will improve enough so on Tuesday she can get her blood tested, get platelet count over 50 with platelets if needed, get the line removed from her chest and head home.

Today she got two bags of platelets and one bag of whole blood.  We got home about 5:30.  This is the second day in a row that she has missed her afternoon nap. 

We both were disappointed but would rather have the nurses with experience with  myeloma patients tweaking her blood.

We met with a nurse scheduler and it looks like we will be returning to Little Rock for Consolidation #2 on about August 15th.  This should be the last extended therapy phase.  It will be followed by 3 years of maintenance which can primarily be done in Springfield with initially quarter checkups in Little Rock which should later be at 6 month and possibly yearly intervals.

I am concerned that Carla has a runny nose and a slight cough tonight.  Hopefully she hasn't caught a cold or virus while sitting in the lab frequented by other sick myeloma patients.

Thursday, July 1, 2010

Meeting with Top Doc

Carla's white blood count was up to 1.51 from 0.49 but her platelets had dropped to 19.  Her CRP which is a measure of possible infection or inflammation was much lower than the 30 yesterday.  She has had problems with low blood pressure so they gave her another liter of saline solution.  Our appointment to see Dr. Barlogie was for 1:00 and we got in to see him about 3:30.  He decided everything was on its way up.  He could have the CVL line pulled tomorrow or we would have to wait until next Tuesday because of the Fourth of July three-day weekend.  He decided for her to get her blood work done tomorrow but after they give her a bag of platelets.  They will repeat this if necessary to get her platelets up to 50.  Then she will get her line out.

We will stay in Little Rock and go back to the Myeloma Infusion Center early Saturday morning for a blood draw.  After the results are reviewed by the APN she will be free to return to Springfield IF there are no concerns.  The main concern generally is the WBC.  If it is below 2 we will have to remain in longer in Little Rock.  Of course there is still the possibility of infection which would raise her CRP and we would have to vacation longer in Little Rock.

The local news tonight said there had been 28 days this June where the temperature was above 90 degrees and the average for June is 4.  With an average high of 94.7 degrees this was the third warmest June in Little Rock's recorded history. 

Tuesday, June 29, 2010

No Blood Clots

The best news today was they could not find any blood clots in Carla's legs.  In January, Carla had one in her left calf and an older clot in her right leg.  She had a pain in her left thigh and her blood test the past three days had shown her CRP which measures inflammation and infections was up from 5 to about 30.  They couldn't find any new blood clot nor could they find the previous two clots.  The Lovenox shots must be working!  Her platelets were at 37 so she didn't have to get any platelets.  Those two bags of platelets yesterday must have helped.

Due to the elevated CRP, they administered two antibiotics via IV's.  Her white blood count was only slightly higher going from 0.21 to 0.25.  We need for that WBC to get up over 2.0 before we see the top doc on Thursday. 

Monday's rest seemed to help with Carla's fatigue.  A migraine headache has plagued her the past two days.  Hopefully she will get relief from the headache and her WBC will shoot up.

Not much has changed otherwise only that the weather finally cooled down some with about a half inch of rain last night and this morning.

Monday, June 28, 2010

Low Point

It looks like Carla has reached her low point where she feels she is "walking through the valley of the shadow of death."  Her white blood count was 0.23 today and her platelets were 10.  They want to keep her platelets above 30.  We went into Myeloma Infusion Center at 9:30 and got home after 4:00.  She has been running a low grade fever of 99 - 100 and therefore they have taken samples for blood cultures the past three days.  Yesterday with a WBC of 22 she should have been called back to get a platelete transfusion but wasn't.  Today they had to get blood samples, do the lab work, order the platelets, administer the transfusion of platelets, get another blood sample, have the sample run, order more platelets and administer the transfusion of these platelets.

Carla has had a pain in her left thigh.  Today the APN nurse ordered a Doppler test on that thigh which will be done tomorrow at 1:00.  This will show if there is a blood clot in her thigh.  This is similar to the problem she had in January when she had a blood clot in her left calf.  Hopefully it is only a strained muscle from Carla doing her stretching exercises.  The Lovenox shots have been given to lessen the probability of blood clots. 

This evening, Carla did not eat any dinner.  She was running a fever of about 99.6 and just couldn't eat. 

We were given an infusor just in case her fever goes up overnight.  I am to call the myeloma doctor on call if her temperature reaches 100.5.  The infusor could save us a trip to the emergency room.  We have had these infusors a couple of times before and they just expired in our refrigerator.  Hopefully this will be the case this time.

Hopefully extra rest will help her body rebuild and she will be much better in the morning.

Wednesday, June 23, 2010

On Track for Consolidation #1

As I posted last time, Carla is being treated in the Myeloma Infusion Center this time rather than 7C in the hospital as 7C does all of the stem cell transplants and they are full up doing those.  The Myeloma Infusion Center (MIC) is in the Arkansas Cancer Research Center.  We had walked by a large full waiting room many times not realizing that all of the patients were myeloma patients.  One of the big differences between 7C and MIC is MIC draws your blood and bases most of what is does on yesterday's blood test results.  They draw blood samples and send them to the lab.   If there is something critical when they get the results they call you back to MIC so they can respond to the test results.

Yesterday Carla got her black bag of two pumps and IV bags off.  She doesn't have to walk around with her anchor attached.  Today we discovered more about UAMS.  When the tech came to get Carla he said she was going to MIC Express.  They have a separate smaller room that is MIC Express.  If they anticipate very little treatment, patients go here.  Carla's sodium and potassium levels had been low yesterday in spite of the huge potassium horse pills Carla takes twice a day.  They attached an infuser (baby bottle size plastic bottle with a balloon containing the IV solution).  Her blood pressure dropped below 95 upon standing so she had to get 500 ml of saline solution.  Carla became nauseated after breakfast so she hadn't drank enough to keep her hydrated. 

Yesterday's white blood count was 3 when the two previous days the WBC had been 9 and 5 respectively.  I imagine she dropped below 2 today and is neutropenic.  She is acting like she is at least.  She didn't want to eat at noon so she drank an Ensure.  Tonight she wanted soup and sliced pears.  She is resting almost all of the time.  This apartment has a new comfortable recliner and Carla is resting there for a break from the bed.

Carla received a growth factor shot this morning as well.  In the previous treatments she did not receive growth factor shots until her WBC was near zero.  I guess this is one of the differences with consolidation phases.

It is hard to see someone go from feeling rather well to being so sick.  We just have to believe that it will be worth it once she is on the other side of this therapy.

There are still a lot of sick coughing patients at MIC.  Carla wears her mask every time we go to MIC.  Fortunately, MIC Express handles fewer patients and you aren't in there as long.  The sicker patients don't go to the express lab as they probably have to get more treatments.

Hopefully by Saturday or Sunday Carla will be on the upswing.  I really dread her growth factor shots as this has caused her lots of bone pain in the past.  Her back was just feeling better and now will probably ache from the growth factor.

Hopefully we will get a break from the hot weather tomorrow.  The temperature has been between 96 and 100 and the heat index has been 105 - 110 since our arrival. 

Saturday, June 19, 2010

Back for Consolidation #1

Wow!  We really enjoyed our six week break back home.  We saw Carla's back improve and she quit wearing the brace.  We enjoyed having Carla's daughter, Carissa with us.  My brother-in-law, Arden, and my son, John, helped us build a small storage shed in our back yard.  My sister was able to spend nine days with us.  My daughter and her family moved to Springfield from Fort Worth.  A college friend, Valo, was able to drop by for a visit.  It was a great and badly needed break!

Our prayers were answered when we were notified on Thursday, April 10 that there was a one-bedroom apartment available to us through the Home Away From Home program of the Little Rock Church.

On Monday, June 14th, we returned to Little Rock.  Carla had the painful bone marrow procedure and long MRI on Tuesday.  Wednesday she had a CT scan.  We saw Dr. Barlogie on Thursday and Carla got a triple lumen line implanted in her chest.  This time we are scheduled to go to the Myeloma Infusion Center (MIC) rather than 7C at the hospital because 7C does all of the stem cell transplants and they are booked full.  So Friday saw Carla go to the MIC to get her "black bag" containing two pumps and IV bags.  She also started taking the dexamethasone and thalidomide pills.  She will take the pills and have the black bag for four days.  She has to go to MIC each morning to get blood drawn for tests and get her black bag refreshed.

The main chemo drug this time is Velcade which is given as a shot.  Velcade generally does not make patients as sick as the melphalan that she had in preparation for each of the two stem cell transplants.  Hopefully she will not get as sick this time as she did during transplant #2.

One prayer request is that Carla will be able to avoid getting any infection during her low immunity.  There is some respiratory viral infection going around MIC.  Carla wears a mask when she goes to MIC.  Several patients have had extended therapy as they got some infection.  We visited with a friend and his wife who are from Valley Forge.  He got a GI infection and had to spend time in intensive care.  He was excited to finally be going home.

If Carla doesn't get any infection, we might be able to go home as early as July 1.   At least that is when Carla's next appoint is to see the doctor.  Usually he has been able to predict when Carla will need a discharge appointment.

Sunday, May 9, 2010

Back Home!

Sorry to be so late writing an update.  Carla received an unexpected discharge on Friday, April 30.  She was still weak but her blood counts were recovering.  She is not scheduled to return for Consolidation I until June 14 so we decided to release our apartment.  This meant we had to get the apartment cleaned up and load ALL of our stuff into the car.  We got out of Little Rock about 3:00 p.m. on Saturday.

Carissa is with us in Springfield and helps take care of Carla and gives Carla a break from my cooking.  Carla has to get blood work done each Wednesday and have a sample sent to Little Rock every second week.

It probably will take Carla longer to recover from this stem cell transplant.  She still has nausea and weakness.  She seems to be gaining some strength each day.  She was able to accompany me to church this morning.  She didn't feel like sitting for Sunday School and church but did fine for just the service.

We appreciate all of your prayers and look forward to being at home enjoying the warmer weather. 

There will be two more phases to her therapy.  They are called consolidation I & II.  These will consist of 3 or 4 weeks of chemo each.  These phases will involve Velcade and not the harsher Melphalan.  There will be a break between the consolidation phases.  Once she completes the consolidation phases, there will be a 3-year maintenance phase.

I want to add a couple things to this blog.  Through a link that one of this blog's followers follows, there is a Canadian broadcast dealing with the high cost of treatment of multiple myeloma.  It focus is Thalidomide.  Carla's doctor, Dr. Bart Barlogie, is interviewed as he was the one who developed the use of Thalidomide in treating multiple myeloma.  I think you will find it interesting.
http://watch.ctv.ca/news/w5/pills-patients–profits/#clip281624

Last night Michael McKean won the final round of the “Jeopardy!” Million Dollar Celebrity Invitational Tournament.  One million dollars now goes to the International Myeloma Foundation to fund additional research!!! Yeah!
http://www.eonline.com/uberblog/b180143_spinal_tapper_cranks_jeopardy_winnings.html

Wednesday, April 28, 2010

On the up swing!

This is day 12 if you count the stem cell transfusion to be day 0. We saw a HUGE change today in the way Carla felt and her blood counts. Last night she was able to eat real food for the first time since day 2. She has been wearing a 24 hour infusor each day to help her with nausea. I think it has helped.


Since I posted last she has had to have the nausea infusor each day, one bag of platelets and an infusor for potassium and magnesium. Since she was having nausea even taking her large number of pills, they started giving her medications as IV's. This have meant that we have to stay at 7C blood lab about an extra hour or more but we know she gets her meds. We were afraid that if she threw up soon after taking her pills, then she would not be getting her meds.

Today her white cell count jumped from 0.8 to above 3! Her platelets also came up from about 30 to 54! The nurses said they wished Carla could help the other patients with their platelets.

As yet, the growth factor shots have not caused excessive bone pain. This bone pain in her back was a huge problem in transplant #1 and she didn't have much nausea. This time those side effects were just reversed.

I think today was her last time to get the meds as an IV. I think she can take her pills tomorrow. Tomorrow should be the last day for her growth factor shot.

We have a scheduled appointment with Dr. Barlogie on Monday, May 3. I anticipate that he will discharge Carla and we can go home. We both want this break to be longer than the last breaks as we feel we both need some recovery time. This means I will have to pack up all of our stuff as we will release our apartment so we don't have to pay rent over a longer break.

Tuesday, April 20, 2010

Same ol', Same ol'. Not!

We thought the second stem cell transplant would be similar to the first.  Boy were we wrong!  Carla got the high dose melphalan on Thursday and received two bags of her stem cells on Friday.  She felt good on Saturday and we did some shopping at Walmart.  Sunday she felt OK until the evening.  She was very nauseated and didn't feel like eating much.  I didn't think much about it until when she got up Monday and said it was one of her roughest nights.  She had medicine for nausea so she took that and went to the blood lab.

She is basically still nauseated and not hungry.  She has forced some chicken broth and Jello down today.  They gave her some nausea medicine both yesterday and today.  Her blood pressure has been lower every day and they have given her a liter of saline solution.  Today  they gave her 2 liters.  They also attached an infusor to her catheter that runs for 24 hours.

She isn't running any fever and her white cell count and platelets are dropping just like transplant one.  Her electrolytes have been great and everything is going great except for the nausea and lack of appetite.

The APN said she thinks patient's bodies don't get back to normal and they get hit with the second high dose chemo and stem cell transplant.  It might be similar to being knocked down and then when you try to get up you get knocked down again. 

Regardless, we both are glad there isn't a third stem cell transplant scheduled!

Monday, April 12, 2010

Back in Little Rock

Wow!  The four-week break flew by and we are back in Little Rock for Carla's second stem cell transplant.  The drive down was beautiful.  The red bud and dogwood trees put on quite a display for us.  I didn't stop to take pictures but I will post some pictures from our yard in Springfield.

Carla started today off with a 7:00 a.m. MRI that took 2 1/2 hours.  This was followed by a full body bone density test, and a blood and urine test.  We also met with the data manager concerning the research protocol. 

Tomorrow Carla is schedule for to for that dreaded bone marrow procedure at 7:45 a.m.  This is where they go in through the pelvis in the lower back and extract a sample of bone marrow.  A gene and chromosome analysis is performed on this bone marrow sample.  At 11:00, Carla's breathing is checked.  At 12:00 we are scheduled to meet with a research nurse.  At 12:45 her heart is checked.  We get a break to come back to the apartment before getting a 90 minute PET scan performed at 6:00 p.m.

The PET scan requires a six hour fast before it and Carla can't eat many carbs after tonight.  This has trigger severe migraines for Carla is the past.  Hopefully we can prepare by taking meds prior to this procedure.  It is also difficult for Carla to lie on her back for this 90 and 120 minute procedures.

The doctor should have the results of these two-days of test when we meet with him on Wednesday.  If she is deemed ready for the stem cell transplant, she will get the tri-Lumen catheter implanted on Wednesday afternoon, get the high dose of melphalan on Thursday followed by her stem cells on Friday.

Here are some pictures of our backyard.






Wednesday, March 24, 2010

Home Sweet Home!

I haven't been keeping this blog up to date.  Basically Carla was able to come home last Thursday after meeting with two neurologists.  They couldn't promise that they could get her back to be pain free but Dr. Pait said he could improve her quality of life.  He would have to extend the metal rods further down her back and pin them to better vertebrae.

While at home she has to get blood work done on Mondays with the results faxed to Little Rock.  She gets an IV of Zometa today.  Zometa is a chemical that facilities bone repair.  She had Zometa last September and again in October when she was being treated in Springfield.  I have the task of giving Carla her daily Lovenox injection.  Carla has an appointment with the Springfield neurologist who did her back surgery to see what he thinks would be the best solution to her back's hardware problem.

We plan to return to Little Rock on April 10th or 11th.  Starting on Monday, April 12th she will have two days of tests.  She starts the week with a 7:00 a.m. MRI.  On Wednesday, she has an  appointment with Dr. Barlogie to go over the test results.  If there are no problems she will get the catheter implanted that afternoon, get the high-dose melphalan on Thursday and get her second stem cell transplant on Friday, April 16th.

Most likely I won't have any updates to this blog until we get back in Little Rock.  We are enjoying the warm spring-like weather, the green grass and dafidills.  We are enjoying having Carla's daughter, Carissa, with us and we appreciate her cooking!  It gives Carla a break from my TV and heat-and-serve dinners.    

Thursday, March 11, 2010

Great News!

Carla's blood test results today were excellent.  Her white blood cell count jumped up to 4.41!  She got a 1/2 L of saline and then headed off to see Dr. Balogie.  Our appointment was for 11:30 but it was 2:00 before we got to see him.  We didn't get out of MIRT until after 5:00.  It was a very long day.

Here are the graphs...


Dr. Barlogie was pleased with her results.  He said her multiple myeloma was in remission.  He wanted us to return in about four weeks for the second stem cell transplant. 

Most of our talk today centered around making plans to get the hardware in Carla's back repaired.  He doesn't want any invasive surgery until after the second transplant and the completition of the two consolidation chemo phases.  This would mean the fall at the earliest.

We want to meet with some neurologists and see how they proposed to repair her back.  We meet with one at 9:00 tomorrow morning and Dr. Barlogie is atempting to get us an appointment with another one on Monday.

Carla is scheduled to get her CVL Triple Lumen catheter removed tomorrow morning at 8:30.

Now we have to decide if we will continue to rent our apartment for these four weeks or move everything back to Springfield and then hope we can find another one when we return.  Right now, I lean towards continue renting it as the rent is reasonable and there are more patients coming to the Myeloma Institue all the time. 

We had quite a storm last night.  Southwest of Little Rock (Benton) and northeast of Little Rock a tornado was on the ground.  The wall cloud passed less than a mile west of our apartment.  A TV Station near our apartment has a picture of the wall cloud on their web site.  http://arkansasmatters.com/mymedia/view.php?id=72822

Carla's daughter, Carissa, drove down from Springfield.  She drove our Honda and the oil light came on near Harrison.  She couldn't find any mechanic open as it was after 6:00 p.m.  She had to spend the night in Harrison and get the car checked out this morning.  It looks like it was the sensor that was a problem and not the oil pressure.  She was able to get it checked and still made it in time to meet Dr. Barlogie.

Carla's birthday is tomorrow.

Wednesday, March 10, 2010

Comin' On Up

Carla's blood test results looked GREAT today. She had a lot of bone pain last night so she didn't get much sleep.  The growth factor shots causes so much bone growth that it hurts.  She especially notices this in her spine. 


We have more blood tests tomorrow and then an appointment with Barlogie at 11:30.  We have learned to try for morning appointments with him.  His appointments are scheduled as late as 4:00 but are often backed up.  I heard that one night this week he didn't finish his appointments until 9:30 p.m.  Most of the other doctors in the Myeloma Institute are young and he ends up seeing the bulk of the patients.  The number of patents per week has increased since he presented his research results last year.

I think Carla will be released to go home in the not too distant future!

Tuesday, March 9, 2010

Going Up?

Today's blood test results may indicate the stem cells have engrafted and are producing.  The WBC was up to 0.22 from yesterday's 0.08. 


The RBC also showed a slight increase.  The platelet count was back at 30 so Carla had to get a bag of platelets and the Lovenox shot and growth factor shot.  The increase in platelets shown earlier in the graph was due to an earlier bag of platelets.  We are very thankful for blood donors!

The CRP rose to 21.40 from yesterday's value of 15.4 when the normal range is 0 - 10.  This indicates inflamation but could be due to rapid bone marrow growth.  Carla had this same problem during Induction I.

Carla has been very uncomfortable the past two days.  Her back bothers her more and she can't get comfortable in bed or in the new recliner.  I think part of this might be attributable to bone pain due to rapid bone growth.

We hope the upward trend continues tomorrow.  Her immunity will be considered low until the WBC gets above 2.

Monday, March 8, 2010

Still Waiting...

There wasn't much change in Carla's blood test results today.  Her platelet count rose to 40 but that was probably due to her getting an infusion of a bag of platelets yesterday.  Her WBC was 0.08. 



One area of concern is her C-Reactive Protein which came up to 15.40. Normally her CRP value has been about 5.  Normal range is 0 - 10.  The CRP is an indicator of inflamation such as an infection.  Some patient's CRP values get as high as 300.  Carla had a CRP value near 50 during Induction I.  When it was that high she had to get an antibiotic IV and I had to give her infusers of antibiotics at night.  We never did find any test that showed that she had an infection.  So far she has been fortunate to not get mouth sores.  I think we have the diarrhea under control now.

We will just wait and see what tomorrow's results are.  Hopefully the WBC will start rising soon.

Sunday, March 7, 2010

Still Waiting...

Carla's blood pressure was almost normal today but they decided to give her a liter of saline anyway.  She also got a bag of platelets since her count dropped below zero.  She also got Lovenox and growth factor shots.



Carla felt much better today.  After going to the blood lab we swung by Subway and got food for a picnic lunch.  We drove out to Maumelle Lake and had a good time before heading home for Carla's nap.  The temperature approached 70 degrees today!

Saturday, March 6, 2010

Same ol' Same ol'

Carla's blood test results were good and about the same as yesterday.  The platelet count droped below 50 but instead of not getting a Lovenox shot, she got one of a smaller dosage.



One area of concern is Carla's blood pressure.  Her highest blood pressure was only 79 today and 76 when standing.  She had to get another liter of saline solution.

The weather today was great.  I wanted to get outside some this afternoon but Carla was fighting a migraine headache.  I did sit out on our balcony some while doing loads of laundry.

Friday, March 5, 2010

Almost Zero!

Carla's WBC was down to 0.07 K/uL.  Over the past 24 hours it could have reached 0 and started up or it may be still dropping.  The APN ordered giving daily growth hormone shots.  She got her first one today.  This growth shot will stimulate the production of white blood cells.


The platelets dropped too as they were at 59.  Today was probably Carla's last day for Lovenox shots.  The blood has so few platelets that the danger of her getting a blood clot is quite low.

Carla's immune system is quite weak.  There is a respiratory infection going around the patients getting daily blood tests.  Carla is wearing a mask most of the time she is in 7C.

Carla had a bad diarrhea case last night and she didn't get much rest.  She started taking some medicine and hopefully she is over it. 

Thursday, March 4, 2010

Still Dropping!

I just updated Carla's graphs.  Everything is still going down and the WBC is approaching zero.

WBC and RBC

Platelets
Her platelet count was 80 so she had to get the Lovenox shot for bloot clots.  They will discontinue the Lovenox when the platelets drop below 50 which will probably be tomorrow.

Carla has some nausea, fatigue and diarrhea.  She also had low blood pressure when she stood (89) so she got another liter of saline solution.  Her CRP was up slightly which indicates inflamation somewhere.  Hopefully this was just due to an irritated gut and not the start of an infection.

Wednesday, March 3, 2010

Waiting and Dropping

We are very much in a waiting game.  Carla only wants to sleep.  She forces herself to eat but does not have an appetite.  We go to the blood lab each day and so far her results have been excellent.  Her blood pressure drops to much when she stands so yesterday she had to get a liter of saline solution as an IV and today it was 1.5 liters.

Basically we are waiting for her old bone marrow to die off and the transplanted stem cells to realize they need to become new bone marrow and make blood cells.  The white blood cells have a shorter life time and therefore their count drops faster than the red blood cells.

Most days they conduct 37 or more different tests.  Mostly I have learned to focus on:
WBC  White Blood Count  These are basically the immune system
RBC  Red Blood Count      These transport oxygen
Platelets                             These clot your blood

Until Carla's platelets fall below 50 K/uL she gets a Lovenox shot to help prevent blood clots.

We also closely look at her electrolytes such as sodium, potassium, magnesium and calcium.  The C-Reactive Protein or CRP count indicates inflamation in the body which can be due to about anything.  A high CRP might indicate an infection.  When Carla's CRP goes up they draw extra blood for cultures.  This time her CRP has been very low.  It spiked at the end of induction 2 when she had a blood clot in her leg.

I have plotted her WBC and RBC since the melphalan was given on 2/25 and the stem cells were transplanted on 2/26.  Initially the WBC goes up because she was on the steroid, Dexamethasone for a day prior to the melphalan up until 1 day after receiving the stem cells.
WBC and RBC Counts Versus Date

As you can see, the white blood cell count is decreasing rapidly and the red blood cell count is remaining almost constant.  Thi week, the WBC has been below 2 K/uL and this is when her immunity is quite low.  Several patients are fighting colds and other infections.  Carla has to wear a mask when she goes to the lab.  We also wash our hands with antibacterial soap a lot.

Platelet Count Versus Date

Her platelet count is dropping quite fast.  It will bottom out near zero similar to the WBC and the new bone marrow will have to make new platelets as well.

Friday will be day 7 since the transplant and they say days 7 - 17 are generally the low times.  Not only are the white blood cells and platelets low, but the patient's energy level is also low.

I pray that Carla can avoid infections and other complications.  So far she hasn't experienced extreme nausea or mouth sores.  She has alcohol-free mouthwash and avoids rough brushing of her teach.

I am amazed at how open the Myeloma Institue is with the test results.  Nurses bring printouts to the patients almost as soon as they receive them.  They want patients to be informed and to track their progress.







Sunday, February 28, 2010

Stem Cells!

Carla has done quite well this week.  On Thursday, her blood tests results were ALL within the normal range!  She was able to get her melphalan IV as scheduled.  We made certain Carla's mouth and throat were cold as she ate ice and drank ice water for about 30 minutes prior to taking the melphalan and also for about 30 minutes afterwards.  The melphalan attacks rapidly growing cells and the cells lining of the mouth and throat are of this type.  The cold temperatures cause the blood vessels to constrict and therefore less melphalan gets to them.  Hopefully Carla won't get bad mouth sores.

Friday she got slight over six million of her stem cells replaced.  The transplant process took about 4 hours.  She first had to have the blood tests and wait about an hour for the results.  They don't move her harvested stem cells from storage until they know they can progress with the transplant.  The blood tests, wait for test results and wait for delivery of the stem cells took about two hours.

Carla's APN nurse had to administer the actual transfusion via an IV drip.  I planned to get a picture during this process but was listening to the instructions from the APN about Carla's care over the next two weeks that the actual transfusion was over before I could get the camera out.  It only took about 15 or 20 minutes for the transfusion.  The first side effect I noticed was Carla had this "creamed corn" smell.  The stem cells are preserved using DMSO.  This odor is released through a patients skin for two or more days.  Carla wasn't able to detect the odor. 

Here is a picture of Carla taken during the two-hour wait after the transfusion.  They make the patients stay for at least two-hours so they can monitor all vital signs to see if there is any adverse reaction.



As you can see, Carla had to have oxygen throughout this process and get a saline IV.  The netbook computer is a recent item that I got for Carla.  It weighs less than 3 pounds and she can use it in the hospital 7C while she waits for blood test results and for IV's to finish.  I also brought a wireless router back this time so she can have network access in her bed or recliner.

When we paid our rent this month, we let the church representative know that with Carla's back problems she wasn't able to sit in the recliner or chairs in the apartment.  Yesterday they exchanged our old worn out recliner for a much nicer one.  Carla has been able to use the recliner now.

Yesterday, we finished the lab work about 11:00.  The temperature was about 60 degrees with plenty of sunshine.  We decided we wanted to get out before Carla's blood counts dropped.  So we rushed home to make sandwiches and headed to Hot Springs, AR.  Hot Springs is billed as being the first resort in the US.  We took an elevator to the top of Mountain Tower and toured a restored bath house.  It was a great day!

Now we are in the waiting game.  Carla's blood counts had dropped a lot today.  The APN said she would probably experience fatigue, diarrhea and mouth sores with the worst period being about a week after the stem cell transplant.  We look forward to having all of that behind us!

Tuesday, February 23, 2010

Stem Cell Transplant #1

We returned to Little Rock last Sunday, Feb. 21 only to find that our refrigerator had quit working while we were gone. A call on Monday got us a new refrigerator.
On Monday Carla had:
  • Blood Tests
  • Pulmonary Function Test
  • EKG
  • Echo heart test
Today, Tuesday, she:
  • Met with one of the research data staff members
  • Had a 2-hour full-body MRI
Tomorrow we
  • Meet with a research nurse
  • Meet with Dr. Barlogie, and hopefully
  • Get her Central Venous Line implanted again
  • Start Dexamethasone pills which she will take for four days.
On Thursday she will get her high dose of mephalan.  For information about this drug see:
http://en.wikipedia.org/wiki/Melphalan

and on Friday she will get her stem cells implanted. The stem cell transplant should take about four hours.

After her stem cell transplant it will just be a time of waiting for her body to recover. During this time, Carla will have to go to the lab for daily blood tests and any meds or IV's deemed necessary based on these test results.

Wednesday, February 10, 2010

Break in Treatment!!

During the white-out snow storm Monday, Carla saw Dr. Barlogie and he approved her taking a two week break. She got the triple lumen catheter out just before things shut down at the medical center due to the five inches of snow. We hurried back to the apartment and decided to try to get out of Little Rock.


During a downpour that turned the snow into slush, we loaded the car and left about 3:00. After consulting the Arkansas and Missouri road condition map, I decided to take the westerly route via Fort Smith, Fayetteville and Joplin. The first hour was difficult driving. There were lots of cars and trucks in the ditch but we made it. After Russellville, the roads were wet and it was snowing but we could make good time. East of Joplin, the snow started sticking and we had to crawl back the last 20 miles but we arrived home shortly after 9:00.

Little Rock would have been a frozen sheet of ice on Tuesday and probably wouldn't have been a good time to leave either.

Carla's daughter, Carissa, graduated with her Masters in December and arrived at our house about two hours prior to our arrival so she had the house warmed up before we got there.

Due to Carla's two blood clots, she had to get a daily Lovenox shot. Growing up on the farm I had given shots to livestock. I find giving Carla her daily Lovenox injection to be more stressful. Only 11 more shots! Carla has to get blood work done on Mondays and Thursdays with the results faxed to the Myeloma Institute. They have to draw additional vials on Monday and overnight them to Little Rock for running the myeloma marker tests.

We plan to return on Sunday, Feb. 21 with testing on Monday and Tuesday, Dr. appointment and catheter implant on Wednesday, high dose of Mephalan chemo on Thursday followed by stem cell transplant on Friday. Depending on Carla's response, it will take 2 to 3 weeks for her recovery from this treatment before we can return home. I guess that shots most of March.

The treatment protocol says we can start the second stem cell transplant anywhere from 6 weeks to 6 months after the start of the first transplant.

Tuesday, February 2, 2010

Ice, Ice and more Ice!

Last Thursday night and off and on Friday Little Rock got rain, sleet, ice and snow.  Fortunately the ice didn't form on the trees.  With our 4-wheel drive Highlander we were able to get in to the blood lab for tests on Friday and Saturday.  We were able to help transport another patient whose wife was afraid to drive on the ice.  Harvey did not go in to the lab on Friday and by Saturday he was in need of a blood transfusion and antibacterial IV.  His CRP was over 200.  Normal CRP range is 0 - 10.  He had a sinus CT scan yesterday as the doctor feared he had a sinus infection.

Our apartment is in the southwest corner of the parking lot.  There is a hill just in front of our apartment where I park our car.  These Little Rock folks don't get enough ice and snow to be experienced at driving on ice.  A Ford Expedition attempted to turn the corner and go up the hill in the parking lot.  Sitting in our apartment I could smell burning rubber.  I went out to help but didn't want to actually climb in behind the wheel in case I would hit other cars.  He left his car in the middle of the parking lot.  He put a huge rock behind the wheel but during Friday night the car slide down the hill and into another car.
Ford blocking part of driveway

This picture is taken from the back of our car.  You can see how much this white Ford blocks the drive.  I was able to back up the hill and get around the Ford on Saturday after helping another patient get his van moved.  The van driver and his daughter are both being treated at the Myeloma Institute.  He needed to get in to have his stem cells harvested.

At the top of the hill behind our car was this view.

View from our parking spot
This gives a view of the ice coated hill.  Note the black car at the top that has slide into another car.  We got both of the cars out Sunday afternoon.  The drivers had never heard of using sand to get better traction on the ice. 

Once I got our Highlander out, I parked in a different spot.  I felt fortunate that no car had slid directly down the high into our car!

Blood Clot

Carla's blood chemistry had been so good the end of last week that on Saturday they told us not to come in on Sunday but rather come in Monday at 7:30 a.m. so the results would be back before our 10:00 appointment with Dr. Barlogie. The APN predicted that we would be able to get the catheter out and we could go home for a few days before starting the first stem cell transplant.


The blood test results had a moderately high CRP of 50 which can indicate an infection or some inflammation. The doctor had them do a blood culture and an ultra sound on her legs. They found a new blood clot in Carla's left leg and an old one in her right leg. One of the side effects of Thalidomide is blood clots.

Carla had to go back to the blood lab and get a Lovenox injection. She will have to continue these for a few days.

Carla had an MRI for a hour late last night and is getting a PET scan this morning. Hopefully these will show no active lesions!

The hardware in Carla's back tends to shift around some in spite of her brace. We wanted to get a consultation with the neurologist but haven't been able to get that arranged. If it would require major surgery she could not have it until she is finished with all of thise chemo. It would be nice to know what our options are for repair of the August surgery.

Basically we were rather discouraged last night. At the start of the day we had high hopes of being back in Springfield Monday night or Tuesday. Now we don't know if we will be able to go home before Carla has the first stem cell transplant.