Eric is making all the other cancer patients look bad

When we checked out of the hospital on Monday, the Bone Marrow Transplant clinic set up lab draw appointments for every day this week.  The schedule was a tad depressing, having to go back to LDS hospital every single day, but at least Eric was out of the hospital.

Tuesday Eric's blood work was so good (neutrophils up to .7) they decided we could skip coming to the hospital on Wednesday and just show up for the lab draw and check up on Thursday. 

Today Eric's blood was so amazing (his neutrophils are up to 1!) the doctor decided we could cancel all of the daily lab draws and just come back next Wednesday for a lab draw and check up.  What great news!

Unless something dramatic or exciting happens (and I hate drama and excitement!) I probably won't update the blog until after our appointment next Wednesday, so I thought I would just give a few insights into what our life is like now that we are home.

We go for a half hour walk each morning, and move much faster than we did before entering the hospital.  Eric doesn't have to wear his hepa filter outdoors unless it is windy or he might encounter groups of people.  So far, the only people outside during our walk times have been kids going to the junior high bus stop, so I don't think we have to worry too much about crowds of people at 7:00 a.m.  Eric also has to be careful to avoid the sun.  Exposure to more than minimal sunlight can cause Graft Versus Host Disease to develop, so Eric is wearing a cap with long flaps that hang down to cover his ears and back.  So if you see a suspicious looking character with a weird mask and cap in our neighborhood, please don't call the police.  It is just Eric out for a walk.

Food is not as exciting as it once was for Eric.  Strong flavors and spicy food are unpleasant and will continue to be unpleasant until his taste buds get back to normal.  Day to day Eric has noticed that things are less "off" than they used to be.  Water only tastes mildly disgusting now, which makes it easier for Eric to get the amount of liquids he needs to protect his various organs that are stressed by either the chemo he had a month ago or the meds he is on now.  He is already tired of me cheering him on to eat and drink more, but he is starting to slowly put on weight.

All of Eric's medications are now oral except for his daily dose of magnesium.  Each afternoon I have to clean his central line, flush it out, and attach a softball sized plastic ball filled with magnesium to the central line.  Four hours later the plastic ball has deflated as the magnesium has flowed into Eric's bloodstream through the central line.  I then clean it, flush it, put in heparin (which keeps it open so it doesn't clot up) and cap it off.  Great fun and pretty amazing! 

After five weeks in a hospital room, Eric is enjoying having an entire house to wander through, his own recliner, a TV with more options, lots of books to read, food that doesn't have to ordered from a limited menu cafeteria 45 minutes before he wants it, easier access to the internet, and his own bed. 

As far as visitors go, any adult that is healthy and hasn't been exposed to someone who isn't healthy can come visit.  Just don't expect any hugs or handshakes.  Half of our family room is Eric's half and the other half is for visitors, and we don't mix it up.  Eric would love calls and visits because he has a lot more energy and focus than he did before his stem cell transplant.  I would say he is back to about where he was in the middle of June.

What do we anticipate in the future?  It will take a long time for Eric's body to recover from the cancer and the chemotherapy.  Debbie's stem cells are working hard, but it will take many, many months before Eric's immune system is fully functioning.  It will also be many, many months until he is back to full strength.  From what we have heard and read, we will feel very fortunate if Eric's immune system and body are full strength in a year.  We have been warned that it can take two to five years.  And, the doctors warn of detours and side effects many recovering stem cell recipients experience.  Of course, as we all know, Eric is very determined and will always try to be ahead of the curve.  You just can't keep him down!

What a difference five weeks makes

Monday, August 19, Eric was admitted to LDS hospital to prepare for and receive a bone marrow transplant in hopes of curing his bone marrow cancer.

Monday, September 23, five weeks later, Eric was discharged from LDS hospital.  During those weeks he had four days of high dosage chemotherapy to kill his bone marrow and the cancer.  On August 28 he received the bone marrow transplant, which consisted of an IV drip of stem cells harvested from his sister Debbie's blood. 

As of this Monday, Eric is 30 pounds lighter and looking slim and trim.  His appetite is increasing even though his taste buds are still messed up from the chemo (a bitter after taste for most foods).  Eric is pain free and nausea free.  And best of all, now that Eric is home he can sleep in peace without worrying that anyone will interrupt to administer meds, take vitals or draw blood for labs!

Now we just wait to see what happens next.  The doctor warned us that it is not unusual to be readmitted to the hospital a few times during the healing process in order to fight the infections that are bound to occur.  Graft Versus Host Disease could also occur at any time, so we have carefully monitor anything unusual like changes in skin, increases of temperature, and change in bodily functions.  We will be returning to the Bone Marrow Transplant Clinic numerous times so that Eric's blood work can be checked.  And every time his blood is checked we get a report so that we can watch as Debbie's awesome stem cells help Eric to develop new bone marrow that is cancer free.  Today his neutrophils are up to .7, prompting the doctors to call off tomorrow's scheduled blood draw.  Eric's platelets and red blood cells are doing so well that he may not have to receive any more transfusions!  It is a miracle!

From Eric:  I can't begin to tell you how amazing and humbling it is to be out of the confines of a hospital room and back in my own home.  It is an immense blessing!  I am confident that, absent the encouragement, kindness and prayers of so many, things would not have progressed to this point in such a positive way.  Please accept my love and gratitude for every good wish, loving deed and word of hope and faith.  I am still somewhat isolated and confined:  stay in the house is the rule, but walks in the neighborhood, drives, visits from healthy adults and activities that do not expose me unduly to potential infection are all permitted.  Thus, I would love to hear from or see any or all of you.  Rest  assured that in every way I can I have attempted to return your love and put each of you in my thoughts and prayers.

Quick update

Eric's neutrophils are up to .5 so we are still scheduled for discharge from the hospital Monday.  Can't wait!

The Good, the Bad, and the Ugly

The Good--Eric is a free man today!  At 1:00 p.m. he was officially unhooked from his Siamese twin the IV pole.  They have been constant companions for almost five weeks.  The IV pole has been his faithful sidekick through this whole amazing process.  It has been much more loyal to Eric than I have been.  It has been there for every walk, every shower, every nap, every meal, morning, noon and night.  The IV pole's constancy through the good times and the bad puts me to shame.  I can never hope to compete with its five week attachment to Eric.

The Bad--After a week of climbing ever higher, Eric's neutrophils plunged from yesterday's high of .7 to .4 this morning.  Why are neutrophils so fickle?  Why can't they have the loyalty and devotion of an IV pole?

The Ugly--Two words:  hospital food.  To elaborate with six words:  Five straight weeks of hospital food!

Must be time to go home cause I'm almost out of chocolate

Eric called me first thing this morning to brag that his neutrophil count was .6!  Incredible!  The head doctor visited with us today to share the good news that now that Eric's count is .5 or higher, he is considered "engrafted."  That means Debbie's stem cells have taken hold and are growing rapidly enough that they can measure the growth.

Eric still has to be weaned away from his IV stand, which is all that is preventing him from going home.  He has become so attached to it over the past month!  Today they took away his IV nutrition bag because Eric can now consume enough calories on his own.  He isn't quite up to drinking enough water for them to take away his hydration bag, but should be there tomorrow.  And then it is a matter of changing all of his IV medications to pills.  Some of the pills are hard on the system so it takes a little time for the adjustment.

The most exciting news from the doctor was that Eric could leave the 8th floor of LDS hospital and go outside!  Eric entered the hospital on August 19, and now on September 18, he was able to finally exit the hospital.  For the past few weeks Eric has had to wear a gown over his clothes, a mask with a filter, and gloves every time he left his room.  The doctor told him if he dressed up in all his protective gear he could leave the building as long as he stayed on the hospital property.  I think the doctor thought Eric would stand in the entryway of the hospital, smell the fresh air through his filter, and come back in since he was still attached to his IV pole.  Not our Eric!  With two of his walking buddies he made a run for it and walked several blocks, dressed in his protective gear and dragging an IV stand!

To quote the doctor, it is possible that Eric will be discharged Friday but probable that he will be discharged on Monday.  Discharging a bone marrow transplant recipient is cumbersome, so they don't tend to do it on the weekend.  Either way, we are pretty excited to think that our hospital stay is almost over.  Good thing, because I am almost out of chocolate!  (Not a plea for more chocolate.  Eric is the one who needs to gain weight, not me!)

Amazing!

I answered my phone early this morning and was shocked to hear Eric.  It was MY Eric, the one who is upbeat and lively in the morning.  The Eric who has an adrenaline high from swimming a mile and wishes it was noon so he could go walking for an hour.  The difference between this Eric and the Eric I have been talking to first thing in the morning for the past month is dramatic.

Eric had a good night of sleep last night!  Ever since about the middle of June Eric hasn't been able to sleep more than an hour at a time.  At first his pain was too great to sleep comfortably.  Then the problems with nausea and other health issues interfered.  At the hospital he has been hooked up to so many IVs it was impossible to sleep for very long without something needing to be changed out or developing problems.  Eric is down to just a few IVs and the pain and nausea are gone.  Last night Eric only woke up twice!  That is huge!

Also, Eric's neutrophils are up to .4 this morning!  That is also huge!  Ever day his blood counts are getting better and Eric can tell that his body is healing.  Yesterday Eric had three very small meals.  Today he had a big bowl of oatmeal and raisins for breakfast.  What a blessing!

My how time flies when you are having fun

Tomorrow it will be four weeks since Eric was admitted to LDS hospital.  Days can seem long, but the four weeks have flown by.  Eric in the hospital is our new normal and it will be interesting to see how we adapt when Eric comes home.

Speaking of coming home, Eric's neutrophil count was .2 on Saturday and .3 today!  We are so excited!  He just has to make it to .5 in order to be considered for discharge.  So far Eric hasn't had any pain with the growth of the new cells in his bone marrow cavities.  In fact, tonight they are taking Eric off of the pain meds they were giving him for the mouth sores and other GI track woes.

Eric also started eating today after a week of nourishment through his IV.  His first solid food was when two sets of husband and wife missionaries brought us the sacrament.  That seemed like an excellent way to start back on food, and we were both pleased that he tolerated it well.  From there Eric ate a small container of applesauce, two bites of a banana, a saltine cracker, and two club crackers--all carefully spaced throughout the day.  His doctor teased Eric that it would be a long time weaning him off of the IV nourishment if he only ate 10 calories a day.  Having lost 25 pounds, Eric is lean and not so mean.

Thank you for your thoughts and prayers.  We know they have made a difference.  Thank you also for your calls, visits, emails and notes.  Eric and I have felt very loved and remembered.  So many of you have made a difference in our ability to cope with the challenges we have faced.  We love every one of you!

In particular I want to mention three very special men who have each visited Eric dozens of times.  They have listened to Eric's woes, given Eric something to look forward to, kept Eric's spirits up, walked laps with him around the nurses' station, and given me some free time.  It would be amazing to have one friend like this, but to have three is a miracle.  I don't want to mention them by name, but Jeff, Tom and Steve, you know who you are!

Small But Good

The next step in Eric's recovery is finding evidence that Debbie's stem cells are now growing in Eric's bone marrow cavities.  Since it would be rather painful to open up his bones and take a peek, they monitor his blood every day looking for evidence of neutrophils, which are a component of white blood cells. 

Wednesday was the first day the lab could find any neutrophils in Eric's blood, and it was .1, which I guess is as low as they can be without being the familiar 0 we have had until Wednesday.  The doctor told us not to be disappointed if Thursday's count was back down to 0 because it is not unusual for neutrophils to mess with your mind like that.  Fortunately, they stayed at .1 on Thursday, which led us to believe they might actually go up on Friday to .11, or maybe even .12!  But those silly little neutrophils aren't budging.  Three days in a row they have been .1! 

We have heard rumors that Eric can go home when the neutrophils reach .5, so you can understand the frustration of three days in a row at .1  The doctors have reassured us that they want the neutrophils to come in slowly or they will cause the same bone pain that Eric experienced with the cancer cells when they were growing vigorously in his bone marrow cavities. 

Patience is a virtue, and one that we have been aggressively pursuing, trying to achieve it quickly so we can hurry on to the next virtue.  I should never update the blog after 9:00 p.m.!  Good night folks!

You have to experience the bad in order to appreciate the good

I had intended to update the blog yesterday because it marked three weeks in the hospital, but I just didn't have the heart to do it.  Sunday and Monday were pretty tough for Eric.  The mouth sores continued to get worse until Eric's entire lower face was swollen.  On Sunday he was only able to drink two protein drinks and that evening they hooked him up through his IV to a nutrition supplement.

Eric hasn't had any nutrition by mouth since then.  We have been assured by the medical staff that almost all chemo patients at some point have to switch to total nutrition through their IV because of mouth sores.  It hurts to swallow, so Eric has a suction tube to vacuum out his mouth when the saliva builds up. 

Oddly enough, now that Eric isn't trying to swallow either food or saliva, he is feeling better.  His mouth and digestive tract are having a chance to rest, and that has made Eric less anxious because eating had become such a burden that he dreaded meal times.  Eric has also gotten on top of the pain and is sleeping better.

Today Eric was really in the zone and doing great!  His mouth sores are still terrible and he has developed some interesting rashes, but he is cheerful, energetic and funny.  He looks better than a cancer patient has a right to look.  One of the nurses told Eric that he had had a good ride so far, and another just shook his head when he saw what Eric was reading (non-fiction 19th century Utah history) and said that no one else has been able to read those kind of books when they are at the stage Eric is at. 

I came in from scrounging up some supper and found Eric telling two male nurses about hiking in southern Utah.  The nurses were on the edge of their seats, listening to Eric's stories.  Thanks to kind friends and family, Eric's room is full of pictures of southern Utah, and he would point to various pictures and tell where it was taken and the highlights of that particular place.  It was pretty funny to observe.


We are still waiting for Eric's neutrophils (part of the white blood cell count) to start growing.  They are at 0 right now, and as they start to develop they will indicate the stem cell transplant was a success and that his new immune system is starting to develop.  Once the neutrophils starts to add up the mouth sores will go away, Eric will feel better, and we will be almost ready to head home.  Hooray!

Long Day

The good news first:  The doctor today said that Eric has done "phenomenally well".  She also reminded us that starting today his white blood cell count should start to increase and in a few days he would have his current phase behind him.

The bad news is that he is feeling pretty crummy.  He has finally started to develop the mouth sores that plague most chemo patients.  We had hoped to be among the lucky few who never develop them, but at least Eric's didn't start up until just a few days before they start to diminish because of the rising white blood cell count.  Some people have mouth sores for a couple of weeks.  Ouch!

Eric's mouth was bothering him so much he didn't even care that his hair finally started falling out today and that this evening he threw up everything he had eaten for the past few hours.  Normally either of those two events would have been troubling to him.

The odd thing was that after throwing up, Eric started feeling better and more at peace with the whole process.  We know it is temporary.  We know that Eric has had fewer side effects than the majority of cancer patients  And we know that the bad part is almost over.  I think Eric was tired of feeling crummy all day, and after he threw up he just kind of said to himself, "Enough with the feeling crummy.  I am just going to mellow out, get some sleep, and I will feel better in the morning."

What now?

Eric has been in the hospital for two weeks now, and the minimum length of time we were quoted was four weeks, so we could be halfway done!  Or not, since the maximum length of time we were quoted was six weeks.  So what is Eric still doing in the hospital if he received the stem cells almost a week ago?

We are now playing a waiting game.  There are two things that the doctors are waiting for before Eric can be released.  First, the chemotherapy caused his blood counts to crash because it killed his bone marrow.  Now the donor stem cells are slowly starting to produce new bone marrow.  It will take awhile before the new bone marrow multiplies enough to make sufficient blood cells to keep Eric going.  In particular, the doctors worry about his immune system because of the lack of white blood cells.  They can give him whole blood to raise his hematocrit, and they can give him platelets, but they can't give him a transfusion of white blood cells.  So we have to wait until his immune system is strong enough for Eric to survive in our germ filled home.

The other thing we are waiting for is to see if Eric develops something called Host Versus Graft Disease.  This is what happens if the body starts to reject the stem cell transplant.  Acute HVGD will show up in the next few weeks.  Chronic HVGD can occur anytime in the next few years.  HVGD can be mild and easily treated or it can be serious and very difficult to treat.  Eric is checked out thoroughly multiple times a day so they can detect the very first symptoms of anything going wrong.

Amazingly, Eric is doing great.  He hasn't even lost his hair yet.  He is off of all pain medication and they are reducing his anti-nausea medications.  So far he hasn't developed any mouth sores, which are common, or rashes, or significant diarrhea.  Instead, he is gaining strength and stamina.  Eric's goal is to walk 25 minutes, three times a day.  It used to take him five laps around the hospital floor to walk for 25 minutes.  He has had to up it to six laps to walk 25 minutes, and in the near future it will be seven laps to make 25 minutes.

We have a pretty good routine going.  I am able to spend most of my time at the hospital, but still get the things done at home that are needed.  Neither of us has gone crazy from the sensory deprivation of a fairly small hospital room.  Eric is sick of the hospital food, but since nothing tastes good right now, that is to be expected.  I try to sneak in treats to him on a regular basis.  Tomorrow I am sneaking in a TV dinner because that is what he is craving at the moment.  Wish me luck!