Thursday was a wonderful, carefree, cancer free day.  After seven straight days of chemo, it was so nice to have a day without any doctor appointments, transfusions, infusions, chemo, lab work, etc.  Eric had planned to go into the office, but instead decided he needed the rest.  Smart man!  Because today was crazy!

We were gone from home 8 1/2 hours, and all of it was spent on cancer.  As we were driving home the theme song from Gilligan's Island kept running through my head: the part about "a three hour tour."  Hopefully we have now learned that nothing is short and easy in the cancer world, so take plenty of things to read and snacks to eat.

Our day started with a blood draw at our regular cancer clinic.  Eric's red and white blood cell levels were acceptable, but his platelets were really low and dropping so they recommended Eric have a platelet infusion.  Today.  The doctor's office threw their weight around and managed to get us worked into an already full day at LDS Hospital's infusion center.  Yeah.

We drove from the doctor's office to LDS Hospital where we first had more blood drawn from Eric's poor right arm (his left arm tends to be stingy, so his right arm has been amazing through all of this).  This blood draw was so they could prepare the platelet infusion to be given later that day. 

Then we headed up to meet our bone marrow cancer specialist team for the first time.  We walked into the waiting room and were greeted by Eric's dad and two brothers.  It was so great to see them there!!!  Eric's brothers were in town and had come to be tested to be stem cell donors for the bone marrow transplant.  How often do you have donors show up even before the actual patient?

Eric had a thorough physical, which he passed with flying colors, other than the fact he has bone marrow cancer and is consequently severely anemic, has a dramatically weakened immune system, and his blood won't clot.  

We then met with the bone marrow cancer specialist (M.D.) and our coordinator (who keeps it all organized) and also the woman who handles the insurance.  We were impressed with how informed, plain spoken, efficient and nice they all were.  We were handed our very own large, information filled, loose leaf binder titled "Intermountain Blood and Marrow Transplant Allogeneic Guidebook."  It has all the answers to all the questions we don't even know enough to ask.

Next Eric's sweet right arm had to be poked to draw the blood they would be using to find a suitable donor for his bone marrow transplant.  This time they left the IV in because we still had to get the platelet infusion.  So it was down to the infusion center for two units of platelets.  Fortunately, this is much faster than whole blood transfusions, because we had missed lunch and were now close to missing dinner.

So now that I have bored everyone with our sad story, here is what we learned today from the bone marrow doctor.  The doctor gave us a good idea of what the future would hold as far as how they prepare for a bone marrow transplant, do a bone marrow transplant, and what to expect afterwards.  But everything has to be fairly general and somewhat grim because the doctor wants us to be prepared for anything that comes up, and with cancer there are always going to be unknowns until they present themselves.  She didn't make us any promises or sugar coat anything.  It is going to be hard, but it is also most likely going to have a positive outcome.

As far as things specific to Eric, it is a real plus that he is in such great shape because he has reserves of strength to draw upon that a lot of cancer patients don't have.  They are still waiting for some of the information that is needed for the final decisions on what very specific type of bone marrow cancer Eric has.  And they will be checking his blood on a regular basis to see how quickly the cancer progresses and how the chemo he has had keeps it at bay. With six possible sibling donors, he has great odds of finding a match, and it will be quicker than if he has to go through the donor registry.  It will take 2 weeks to type his blood, and the blood of his siblings as they are tested.  If one of his brothers is a match, we could be starting with the transplant process in as soon as two weeks, longer if we have to wait for one of his sisters, who won't be tested until next week.

As always, we promise to keep you informed as soon as we learn anything.  We are looking forward to a quiet weekend.  Our next appointment is Tuesday afternoon, so we will report then if not sooner.  Thank you for your love and prayers.  It means a lot to us.

Eric's blood transfusion on Saturday went well.  He has felt stronger since then and enjoys feeling better.  We went to his cancer doctor today.  There really wasn't much to learn on this visit.  They did blood work and Eric's hematocrit number was good after the transfusion but his platelet count was dropping more than the doctor liked.  Eric will finish his seven-day series of chemo tomorrow, and then on Friday he will have more blood drawn to see how his numbers are doing.  We also meet with his bone marrow transplant specialist at LDS hospital on Friday. 

After visiting medical facilities for seven straight days, we only have one doctor appointment so far for next week.  What will we do with all that free time?

I should have mentioned on the previous post that you should not look up Eric's diagnosis on the Internet.  What you will find there will look pretty grim, and is also based on statistics.  But statistics group large numbers of subjects together to find an average, and Eric is not average for this type of cancer.  I have come to appreciate Eric's refusal to be either average or normal.

Eric is younger by a decade than the average person with this cancer.
He does not have any of the underlying health problems that the average person with this cancer has (no heart, lung, kidney, liver, etc. issues).
Eric has never had cancer before.  Many of the people who have this type of cancer have had another form of cancer previously.
Eric has so many people praying for him from so many different backgrounds, religions, countries of the world, that he feels a great deal of love and support.

Also, I mentioned that the chemo Eric is on now will not cause him to lose his hair.  One of our sons thought I was joking because Eric didn't start out with that much hair to lose.  But I am serious (at least about not losing hair from chemo at the moment).  Eric does not want a bunch of people shaving their heads in solidarity with him, and then risking their anger when they see him with a somewhat full head of hair. 

We love you all.  Today is a beautiful day, so live it to the fullest.  We are!

Eric and I just returned from our consultation with the hematologist/oncologist.  The second bone marrow biopsy changed the diagnosis from RAEB-1 to RAEB-2.  RAEB stands for Refractory Anemia with Excess Blasts.  The "2" at the end indicates that there are a greater number of blast cells, which is not good.  The 2 means that Eric's diagnosis went from the low end of high risk to the high end of high risk.

Another piece of paper (so many pieces of paper to deal with!) states the diagnosis is:  Advanced Myeloid Neoplasm with Fibrosis.  If I understand correctly, the fibrosis part of the diagnosis is what made Eric's bone marrow "chunky like cement."

The lab drew more blood today because they are still trying to get enough DNA to do a cytogenetic study.  The results of the cytogenetic study will not lower Eric's risk assessment, but it could increase his risk factor to very high.  Without therapy Eric could be dead in a year from infection.

Luckily, Eric is on the young side for this cancer and he is in better shape than the average person with this cancer.  He doesn't have any other health problems.  The doctor said it was a no brainer that Eric should start aggressive treatment for his bone marrow cancer.
 
Aggressive treatment means a bone marrow transplant at LDS Hospital.  We have an appointment with the specialist on June 28.  Eric has seven siblings (six potential donors), so there are good odds that a suitable bone marrow donor should be found, assuming they will share.  And coincidentally, all but one of them will be in Utah next weekend for a family reunion. 

In the meantime, Eric's cancer is aggressive, so he is having lower intensity therapy now to prevent it from progressing.  Eric will have outpatient chemo seven days in a row, then 21 days off, and then start over again until it is time for the more aggressive treatment at LDS.  His first round of chemo started today.  This was a surprise for us, but we are glad to get the whole process started.

Eric will have another blood transfusion on Saturday, at the same time he is getting his chemo.  The low intensity chemo has side effects, but the doctor told us that Eric probably won't be feeling a lot worse than he is already feeling.  That is reassuring.  He won't lose his hair, but he may have some nausea.

Not quite what we were hoping to hear, but we were very pleased that Dr. Samuelson was open and up front with us.  His entire staff seemed to be very on top of this, which is good because it seems a bit overwhelming to us at the moment.  We have a lot to learn, a lot of appointments in the near future, and a lot of uncertainty as to how it will all turn out.

We love you all and appreciate your prayers and positive thoughts.

Just a word from Eric:  It is so good to know what the circumstances of my condition are and to have thoughtful and creative doctors to chart a course for addressing those circumstances and improving that condition.  This is all that I could ask for and I deem it a clear answer to the kind thoughts and prayers from all who have learned of this situation.  How grateful we are for your love and support!

We have an appointment Thursday afternoon to meet with the cancer specialist.  We are both disappointed that it isn't any sooner, but glad that we have a daughter-in-law and two grandsons here from Virginia to distract us.  They leave Thursday morning.  It will be so nice to finally get definite answers and a schedule of treatments.  I love a schedule.

I really wish we had something new to report, like Eric's specific type of bone marrow cancer and when chemo will start, but we don't.  Hopefully Monday or Tuesday we will get the news.  Eric's primary care physician called last night to see how Eric was doing and visited with him for awhile.  We were so impressed with that, and very grateful for his thoughtfulness and concern.

Eric has been trying to pace himself this week.  He has exercised each morning, but at a slower pace and not as much.  He has spent a few hours at the office also, finishing up a few projects.  Stress is hard on him right now, sort of a trigger for physical pain, and litigation is all about contention and stress.

Pain has been an issue this week, and at first it would get ahead of Eric because he is not used to being in pain or taking any type of painkiller when he is in pain.  His doctor and I, as well as the pain itself, have all ganged up on him to convince him to take painkillers around the clock and avoid circumstances that trigger pain.  He is now sleeping better and not having the intense pain he was feeling at time earlier in the week.

Eric continues to be upbeat and cheerful.  Large doses of Mexican food and diet Dr. Pepper, together with kind wishes from thoughtful friends, neighbors and family, can cure almost anything.

Thanks you for your thoughts and prayers, they mean a lot to us.

Some encouraging news today!  Eric's cancer doctor called and told Eric that while they don't have all the genetic  information from the bone marrow plugs taken last Thursday morning (and won't until the end of this week or the beginning of next week), they have enough information that he could make some predictions for Eric's treatment.

Eric will probably be able to do his chemotherapy outpatient instead of having to be hospitalized.  It will be five days a week, and last for "awhile."  They won't know how many months he will have to do chemo until they monitor how he is responding to the chemo.  After a couple of months he should start to be feeling more energetic than he is now.  That is great news!

The transfusion went well, but Eric was hoping for a little more energy than he has had since getting it.  He went in to the office yesterday and today.  And he has been swimming once and walking twice.  To my mind, that is pretty amazing!  I think he was hoping that maybe Superman had donated blood recently and Eric would get some and now have super powers, but no such luck.

Eric has been achy and not slept well for a couple of weeks.  The doctor reassured him that was normal considering he has bone marrow cancer and had a transfusion. The related symptoms are "flu like" so he becomes increasingly tired and sore throughout the day.

I will post again when we find out for sure what type of bone marrow cancer Eric has and when he will start his chemo.  But I am really happy with the news we received today!