A Picture is Worth a Thousand Words.....

TWO MONTHS IN ONE BLOG

Working from home March 2014

 So much has happened in the last 2+ months and it was difficult to find the time to sit down and keep up the blog between working full-time, supporting two full-time missionaries and taking care of one pretty special, amazing guy, so, as the saying goes, a picture is worth a thousand words. And I figured those of you who are following the blog would rather see pictures than read a lot of medical mumbo jumbo anyway right? I like to SEE what's happening, so here you go  -  with a brief update of the last two months.

Just after first platelet transfusion

 The goal of chemotherapy has always been just a short-term solution to keep the cancer at bay until a transplant could be performed with donor transplant cells. This particular chemotherapy can only used approximately six times.  We've just completed a very, very difficult third round.




So what's next? Is the transplant on the horizon?

February 14, 2014

Not the best Valentine's gift.

A letter from our insurance company dated February 14, 2014 states authorization has been DENIED for the allogeneic transplant stating that it is considered "Investigational and Experimental" and therefore is not approved and not covered.  After the shock, tears and disbelief wore off, then it was time to get to work.  What were our options now?

1) Chemotherapy only (up to six treatments with the current regimen) and then continue to try other chemotherapies until no chemotherapy options were left;

2) Find a clinical trial that would take our case within specific parameters that met the criteria that insurance would then HAVE to pay;

3) Write an appeal to the state Dept. of Managed Health Care (DMHC) and hope they would overturn the insurance decision, which we were told was very unlikely.

Another blood transfusion, but as always he's such a good patient

We started looking into clinical trials, starting with Stanford. One department said no, we don't have any trials, another department said, we might, we'll get back to you.  So we waited and waited and talked to one person who talked to our doctor, who got back to us and said maybe, someone should be calling you. End result - no trial. Next we started talking about checking City of Hope in L.A. for a trial, but in the meantime, I started to put together an appeal to DMHC. It was a longshot but it had to be tried.

Bald is beautiful!!

To the rescue, to whom I can never truly express the depth of my gratitude, came a dear family friend of ours who has some personal experience in composing and presenting appeals.  He coached me, helped me and guided me, gave me helpful tips and format ideas, etc. as I put together the appeal, which included a summary of Scott's cancer treatments, a letter from his doctor and research that the doctor provided me to substantiate our claim. Due to the imminent need for treatment (criteria being death was imminent within the year) we were granted an expedited appeal process and were told we would receive an answer to our appeal within 10 days of receipt of our appeal.

Our 30th Anniversary, April 21, 2014

On April 2, 2014.... we received a letter in the mail from the Department of Managed Health Care.  They had read our appeal.  They had three independent physicians on the panel who had the power to make the decision either way, uphold or overturn.....All three vote to OVERTURN  the insurance decision.  The transplant is APPROVED by DMHC and our insurance company is immediately instructed to comply with their reversal and approve all transplant-related expenses.  It is truly a MIRACLE!!!!

Easter Sunday, April 20th.  A Good Day!!. 

Where We Are Now

As I mentioned above, we just finished a very difficult third round of chemotherapy. We are just keeping Scott as cancer-free and healthy as possible until everything is in place for the donor transplant.


Five strong, healthy male donors have been identified from the national donor pool as a match.  They all live outside the United States.  We are waiting for information from the doctors on what the timeline is to receive their stem cells and start prepping Scott, once he is strong enough and healthy enough to handle the rigors of a donor's cells.  This will include anti-rejection medications to start. 

For now, we cherish each and every day and never take a day for granted.  Each day is a blessing!!!

May 24th. Sick in hosp, but still smiling!

 

 

Just heard he gets to go HOME!

 "Special Blessing" Plant from
my co-worker's daughter to Scott.

VDT-Pace

Chemotherapy has begun.

Saturday Feb 8 at 6:00 PM everything is ready to go.  The dark amber

colored bags are shade screens for the chemo meds because this 

chemotherapy concoction is light-sensitive.  VDT-Pace stands for the following six chemotherapy agents and the steroid (the dex)

Velcade, Dexamethasone, Thalidomide, cisPlatin, Adriamycin, Cyclophosphamide and Etoposide.  It runs 24 hours non-stop for 4 straight days, all but the Thalidomide, that is, which is in pill form so it is taken orally.


Scott feels well other than the pain he is in, but even with only three days of radiation the pain is already little better. But he's still standing as much as possible until he has to be in bed laying on his back. 


Day 1 - Saturday evening - Sunday evening.  He does very well, eats well, all
his vitals are good and laying in bed isn't too painful.  We go for "walks" up and down the hospital hallway. Sunday evening President Wells and Brother Overbay in our ward drive all the way from Lincoln just to bring us the sacrament.  This seems like such a simple thing.  But for Scott who hasn't been able to be at church for months now, having the sacrament brought to him is so special. But this time, it wasn't just driving down the street. This was driving down to Sacramento just to bring the bread and water. But what significance and meaning that bread and that water, when blessed by righteous priesthood holders, has to us who understand what those emblems represent.  The body and blood of our Savior Jesus Christ that was given freely for us. To help us remember him throughout the coming week and to strive to keep his commandments.  It was a holy place for that moment in room 2347 and it felt like the Sabbath Day after President Wells and Brother Overbay left.
 
Day 2 - More of the same.  A little more sleeping, more standing when he can. A member of our stake presidency  comes by to visit.  We love him, we love our stake Presidency.  They are our friends. We feel such love for them and from them.  They are so approachable and down to earth. Chad and Kelsey come by, and we Skype with Evan, Kasey and Boston.  It is so reassuring to have my family there with me. My friends come see me to keep me company at night, or they are helping me at home while I'm at the hospital.  Always, I have so much support.


Day 3 -   Nausea meds are given round-the-clock as a preventive measure instead of waiting til there's a problem. 


Day 4 - at 6:00 PM we are DONE.  A few more medical pokes, prods and checks and by 10:00 pm we are on the road - Home. There's no place like home.

Radiation and Chemo on the Fast Track

Dr. T sends us from our appointment with him straight downstairs to radiation.  We meet with the radiation oncologist who explains that this is very unusual -  to schedule radiation for only three days. Normally, chemotherapy is done over a three-to-four-week period and then chemotherapy is begun.  Since Scott's cancer is growing so fast, he doesn't have three weeks to work with, so the radiation oncologist says they will give him as much radiation as they safely can for three days until he starts chemotherapy.  They can't do chemotherapy and radiation at the same time.  Good thing, really.  It's all poison to the body; better that it's one poison at a time.


They show us the scan and zero in on the humongous tumor that they are going to zap. It's one thing to hear about it and another to see it.


The radiation oncologist makes a great analogy. He says to think of the tumors as weeds in a field of grass.  Radiation is a hoe to take out the big weed.  Chemotherapy is the weed killer to wipe out all the other smaller weeds all at once. The hoe is direct and swift for one weed at a time, but not efficient for lots of weeds.

They explain the basic process and get everything measured and prepped. Another person comes in and takes Scott to the "tattoo" room. What it's really called, I have no idea.  They put little tattoo marks on him so they will know exactly where to aim the radiation beam to hit the tumor and nothing else.  They then schedule him to come back the next three afternoons for radiation - to annihilate that big nasty football-sized weed that doesn't belong inside a person's body.



A Room with a View

We know they are going to admit Scott on Saturday but they don't give us a time, so we just have to wait for a phone call.  It's so hard when you have no idea when the call will come.  Finally at 1:30 pm the right phone call comes. Be at the hospital at 3:00 PM. 


We make the not-so-comfortable trip to the hospital.  We get put in a room with another patient.  He's not so happy to have a roommate. But it seems he's probably really not aware of what's going on. Just as Scott has put his hospital gown and is getting settled in, he becomes very agitated and starts screaming for the police to come, that he needs help because there is a naked man in his room. Scott realizes he's talking about HIM. He's in his hospital robe. He's not naked.  Then the man threatens to kill Scott if he doesn't get out of his room.  Scott sees that the man is restrained in his bed and a nurse is with him.  The nurse is speaking to him calmly.  I've just left the room to get meds from the pharmacy. I hear someone yelling something about the police just as I hit the elevator button and I wonder, is that Scott's roommate?  I begin thinking, how is Scott going to sleep tonight with THAT going on in the room?  Just then Scott texts me and says, 'Don't come upstairs yet.  I don't want you to be worried or upset'.  Then he texts, 'I'm in another room'.  So I come upstairs and find him in a nice quiet room with no roommate.  And we get the bed with the window.  Wow. We've just been upgraded!

Footballs, Chemo and Radiation

Friday, January 31st we once again, travel down to UC Davis where they perform a needle biopsy of the hard lump in Scott's abdomen.  The preliminary slides come back....positive for myeloma.  They then take him in for a full body PET scan with contrast.  This will show any unusual areas in his body, basically masses or tumors by coloring them with dye.  We will have the results on Tuesday February 4th. 


Four days have never gone by sooooo sloooowwwwww.


Finally, Tuesday, February 4th arrives.  I pick Scott up.  We position his two pillows just right in the car seat.  We get him as comfortable as possible.  He times his pain medication. He brings his backup medication so he has it to take at the stroke of the third hour.  His body knows exactly when three hours is up.  He braces himself for the miserable, painful car ride from Lincoln to Sacramento.  I watch his face.  He's pale.  He has perspiration on his upper lip.  I tell him I'll pull over anytime he needs so he can get out and walk around if he needs to and then we'll get back on the road.  He says, no just keep driving. But through all of this, he never gets cross or irritated. He never, ever once complains. He never says, why? Why me?  He never gets angry.  He smiles, he makes jokes.


One morning he got out of bed and he didn't quite get his feet under him and his left leg gave way and he fell.  He got a rug burn on one knee.  He laughed at how funny it was that he was on the ground and couldn't get up.  He had to crawl to the bed to hoist himself back up.  We laughed at how we always make fun of a certain commercial for a product called "Life Alert" where someone does fall down and can't get up and the slogan at the end of the advertisement says, in a very halting voice, 'Every Senior Citizen Should Have Life Alert'.  He is 15 years from being a senior citizen.  But we laugh anyway.  It feels good to laugh.  Really good.  We love to laugh and try to laugh a lot.


We say a prayer together in the car that we will be prepared for whatever lies ahead.  We hold hands and feel the spirit rest upon us as I offer the prayer and pray that the doctors will be inspired to know what treatment will be best and that we will feel calm and peaceful, that we will feel confident in the treatment plan and that we will know that our lives are in the Lord's hands and that we are willing to submit to His will in all things.  We feel good.  We are just happy to finally have answers and know we will leave the doctor's office today with a plan.  Something tangible to focus on.


Our oldest son, Chad, comes with us.  It is soo comforting for me to have family there.  Both of our younger children are on missions. My parents are on a mission. Our other son is married and lives in Utah.   All of our immediate family live in other parts of the United States except Chad. It brings me comfort to have him there with me.


The doctor comes in and says the PET scan shows what he suspected.  There are multiple tumors throughout Scott's body.  Even though Scott's bloodwork shows he's in remission, he is in the rare 5% of myeloma patients who have active cancer that doesn't show up in his lab work.  He says his cancer is now more aggressive than it was even in July (when he had another major episode and was in the hospital for two weeks with severe complications).  He says it has now mutated and that is why the tumors are outside the bone marrow just underneath the skin.  It is growing out of control. 


The tumor in his hip that was the size of an orange two weeks ago is now the size of a football.


Treatment must be begun immediately.  Normally to do radiation and chemotherapy, they will do radiation for 3-4 weeks then start chemotherapy. Chemo has to be started within days, but radiation HAS to be done to start shrinking the football/tumor.  So they only have a three-day window for radiation. So the doctor sends us down to radiation immediately after we leave the appointment.  They confer with us, place tattoo dots in Scott's body to mark the exact spot where the radiation will be targeted. They schedule him the next 3 days for radiation treatment directly to the tumor at a higher dose radiation than normal. This is to ease his pain and shrink the tumor as fast as possible to alleviate all the problems it is causing. The tumor has already caused a fracture in his hip. More damage will ensue if it keeps growing.


As for chemotherapy, he will be admitted to the hospital Saturday for four days of a regimen of 4 different chemotherapy drugs. This will be part of a two-week regimen. He will then be re-evaluated to see how successful the treatment is.  If it is working, he will receive another cycle.  After a few cycles, he will immediately receive a donor (allogenic) transplant. He is no longer a candidate for the transplant with his own cells.  His cancer is too aggressive for that.  So, the 4.7 million cells that were collected will not be used.  They are no longer needed.

MRI's, CT's and PET's

Scott's back pain is becoming increasingly painful, so he makes an appointment with our primary care physician who orders an x-ray and prescribes some minor pain medication.  Two days later the x-ray results come back and look mostly normal, but just to cover all his bases, and with Scott's history, Dr. Cao orders an MRI.  In order to expedite the MRI we drive down to Sacramento at 8:00 Monday night, exactly one week after the first day of the stem cell collection.  The drive in the car to Sacramento is kind of uncomfortable for Scott and we really think more is going on with his back.  This is a bit worrisome.  Could something out of the blue just coincidentally be going on right as we are about to start the transplant.  What are the odds of that??  We are on pins and needles waiting for the results.


Wednesday the results are in.   They are not good.  They show bulging discs, compressed nerve, and a large mass in the left posterior hip to name a few issues.  All appear to be myeloma related.  Based on these findings, Dr. Cao orders an urgent CT scan.  The next day the CT scan is performed.  This shows more details and more damage to the hips and spine from myeloma including "predominantly lytic lesions" (bone that's eaten away leaving a clear area) throughout the pelvis and a soft tissue mass measuring 4.8 x 13.0 x 13.0 cm (about the size of an orange). 


Well, well.....this is of course not good and is causing Scott quite a bit of pain, some tingling in his left leg, but the biggest problem of all, he is unable to sleep due to pain and unable to sit for more than a few minutes.  Pain medication is being tried and it is a balancing act to get the right amount.  Everything is reported to the oncologist, Dr. Tuscano.  The transplant is still on schedule for January 29th.  They can treat the pain in the hospital.  Scott's counts are still great, his labs are still excellent; he is still showing that he is in remission and in the perfect position for the transplant with his own cells first.  So we move forward and continue to make plans with that in mind.  They set up an appointment with a pain management specialist to get the pain under control and get the right amount of medications so he is comfortable and sleeping and rested and ready for the transplant on the 29th.


We see the pain  management specialist on Jan 21^st.  They do a full and complete workup.  Scott is able to almost touch his toes, has feeling in both legs, although the left leg is a bit tingly. He feels okay, still in a lot of pain when he isn’t on pain medication, and is still only sleeping about 45 minutes at a time all night long.  They prescribe a couple of different pain medications, longer acting, a pain patch that stays on 48 hours, medication with morphine every three hours, medication for nerve pain, a muscle relaxer, and a sleep aide in hopes this will work. We feel SURE this will do the trick and leave very hopeful.


This pain medication works for about three days.


It seemed like everyday it was getting harder and harder for Scott to walk.  He could no longer sit at all.  He ate meals standing up. He worked at home on a laptop standing up.  He could no longer bend over and pick anything up off the ground. His pain was becoming unbearable.  The area where the "orange" sized tumor was warm and large and protruding. His left leg wasn't just tingly now, it was numb. He couldn't feel his leg.  If it was touched he could barely feel someone's fingers on it. Then at other times it would burn so bad just the lightest touch would be excruciatingly painful. He had another spot near his belly button that had a protruding hard lump. Could he have a hernia out of the blue?  We were just trying to figure out what could be going on.  The pain was becoming relentless.  Unbearable.  We called the doctor to have him up medications.


On Tuesday, January 28th we had a final follow-up with Dr. Tuscano before being admitted the next morning for the transplant.  We had made it!! Transplant day was the NEXT morning.  Finally!!!!  Now sitting in the car to drive to the hospital was a very big ordeal.  It took pillows, it took someone to help Scott walk to keep him stead on his feet to get to and from the car to the doors of the hospital.  He shuffled his feet when he walked. He grimaced when he got in and out of the car.  He was in a great deal of pain when he got out of the car when we arrived at the appointment.  A car ride was excruciating even with all the pain medication and pain patch and everything.


The doctor comes into the examining room.  He asks Scott a bunch of questions.  When he finds out that in just two weeks his leg has gone from tingly to almost completely numb and he has a hard lump in his abdomen and the area on his hip has noticeably gotten bigger he says there is no way he can move forward with the transplant until he finds out what is going on. He orders an urgent PET scan. He says that will detect any tumors that might be active in his body.  He says it is very rare, but in about 5% of patients with myeloma, they can have active cancer without it showing up on their lab work.  He double checked Scott's labs.  Still within normal range.  Still not moving much at all.  Still within acceptable range for transplant.  This was very, very strange and the doctor had no explanation for it, except to say that Scott could just one of the lucky 5% of myeloma patients who don't have results show up in their blood work.  The PET scan was set for three days from that day, Friday 1/31.

Stem Cell Collection Complete

The next morning Scott gets his three Neupogen shots like clockwork at 7:00 am.  Nurse Kim is getting pretty good at giving shots.  He gets ready and heads out the door for another six hour-day of being hooked up to a machine that cycles all his blood and collects his cells.  Only about 8 million cells needed today.  Hopefully today will be the day.  His back is pretty sore.  Probably just "age".  And laying in a bed most of the day.  He shrugs it off.  He comes home and decides to get in the tub and soak in the tub to relax his aching back.  We wait for the phone call.  At 7:30 pm the phone rings.  Cells collected for the day:  1.6 million.  Big sigh.  Still not enough.  Back again tomorrow.  Mozobil injection given before bed.  Well, they say the third times the charm.  Hopefully tomorrow will be the charm.  If not, they will only collect for four days, so worse case scenario, only another two days left. If they don't get enough, they have cells saved from the first harvest back in 2007 in Arizona.  They can always use the backup cells. 


Collection Day 3:  Same as the last two days, Neupogen shots in the morning, off to the hospital.  In the hospital bed, lay in bed all day.  His back is really, really sore.  It's so hard to lay down all day.  By the time he drives home he can hardly move. He calls me to start the bath for him so he can get straight in the tub.  He aches. He is stiff and sore.  Something doesn't feel right in his lower back.  What could it possibly be?  The phone rings like clockwork.  Cells collect:  1.4 million.  Three day total:  4.7 million.  Short the 10 million originally planned on.  But the doctor says, that will do. And they call it good.  Hurray, we are done collecting!!!!  Stem Cell Collection Phase is over.    Step one, check that off the list.  One tiny little hurdle overcome.  Many more big ones left.  Now.....what is going on with his back?

Bone Marrow Transplant

Think of  it as a clean slate. As clean as it can get.  Chemotherapy wipes out as much of the cancer as possible. It puts the patient in remission as far as their numbers on paper. But with multiple myeloma, because it is incurable, it will start growing and coming back in a very short period of time. So the chemo remission is followed by a bone marrow - now called a stem cell -  transplant. This is done by collecting a person's own cells to give them back (stem cell collection). They are then hospitalized and given a mega dose of chemotherapy to kill off their remaining cells to get rid of the rest of the cancer cells, but the good cells go too.  So they are sick and weak for a few weeks.




Stem Cell Collection


The week before they collect the cells, I inject Scott every morning with a medication (Neupogen)  that makes his body produce lots of healthy cells very quickly for collection. Along with that, a brand-new medication, aptly named Mozobil, is now available that I inject him with at night that helps mobilize those cells so they move out of the bones more easily so by morning there are more to collect.  We were told this drug was very expensive and he only gets one injection each night before stem cell collection. If they collect enough cells the first day, he only needs it one night. When he picks it up from the pharmacy and pays our co-pay, he shows me what it would have cost - for four tiny little vials that we may only need one of.


GOAL: They need to collect 10 million cells for the transplant within 4 days. If they can get them all in the first day, he doesn't have to go back.  When he did this the first time in 2007, he got all 10 million the first day. We are so hoping it will be the same, but with the damage caused by the recurrence of the cancer and being five years older, they say he probably won't get enough in one day.


Day 1 Stem Cell Collection (Medical term - Apheresis). I give 2 shots Neupogen at 7:00 am. Scott goes in for Apheresis. 


To collect the cells, they hook Scott up to a huge machine similar to a kidney dialysis machine through the catheter in his chest  They cycle all the blood in his body through the machine a total of 4 times over a 6-hour period, giving him fluids, calcium supplements, checking his blood counts, etc. throughout the day to make sure everything is normal because along with the stem cells they collect, he loses some nutrients in the blood they have to put back in.  He comes home, rests and waits for the phone call to see if they got enough cells.  7:00 PM the phone rings. 


VERDICT:  1.7 million cells. 


That sounds amazing, but not even close. He knows he has to go back the next day.  9:00 pm, exactly 12 hours as directed, before apheresis,  I give him the $$$$ Mozobil shot that night and pray tomorrow will be the last day for him.