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! 

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.

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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.

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.

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.

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.

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. 

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.