Home Sweet Home

We were only in the hospital for a week but it might as well have been a month.  We were both so grateful to get home and sleep in our own beds.  Steve was especially happy to be freed from all those cords.  Our family was very cared for while we were gone.  Many meals were brought to my kids that were at home and my house was clean laundry done and folded.  My youngest that stayed at my sisters house cried when she brought her home because she had had so much fun with her cousins and loves it at their home.  I was very grateful for all the help and selfless acts of service so many people gave to our family.  Steve has spent much of his days sleeping since we got home.  Today is the first day he is really up and about.  The day after we got home, he had to get a shot that boosts his white blood cell count.  They said it is pretty painful because it stimulates the bone marrow to go into over drive and boost his counts. They said a lot of people experience bone pain that is pretty bad.  They gave us lots of meds to give him before the shot and then more pills for after.  We did it at night before he went to bed, so I think he slept off most of the side effects.  He didn't feel great the next day but it wasn't as bad as they had prepared us for.  Two nights ago, he had his first interferon shot.  We gave him all the pre meds once again but that one knocked him down a bit more the next day.  He was pretty sick, and no energy.  Jacob, our oldest, had an awards assembly I went to that morning. I was surprised when Steve showed up a bit late, but just in time to see Jacob get his award for being on the honor roll and getting good citizenship all year and also intramural champion.  Of course, the best award was the intramural champion.  Steve sneaked out right after Jacob got his award.  He wasn't really suppose to be around so many people at this time in his treatment.  He is at a higher risk for infection and sickness right now.  That was all he could do that day.  He came home and slept the rest of the day.  Today is the first day he seems to be doing better.  He actually went out and started mowing the lawn.  It is a riding lawn mower, but still a great accomplishment right now.  Jacob took over as soon as he got home from school.  I am learning a lot right now about nutrition and how it will help him heal.  It's amazing!!! I didn't really think we were that unhealthy but I see a lot of areas that we will be improving on.  I'm kind of excited to do all we can to help Steve get healthy again and stay healthy.  That is one thing we have gained a greater appreciation of, is having good health.  We have really always been healthy.  Our kids and us have never had anything other than the occasional cough or flu.  We have been very fortunate that way.  Watching Steve lose his health so quickly, has been a challenge.  He will get it back and we will never take it for granted again.  Steve has 2 more shots this week then he has a week off.  We will head back to the huntsman for round 2 after that.  For now, we are just going to enjoy our time together as a family!

Day 4

Today was much like yesterday where Steve slept most of the day.  He only got up once to walk the halls.  The goal is to get up and walk 2 laps 3 times a day.  This huge cart we have to haul around is monstrous and heavy.  That leaves me in charge of pushing it around the halls.  I'm not the best driver of that thing.  Steve isn't the best walker right now, so the two of us make quite the pair walking in circles around the halls.  All I can say is if you see us coming, you better get out of the way. He claims I run him into the wall, I think he can't walk straight. It's probably a little bit of both.  Walking is suppose to help prevent blood clots and really helps you feel better.  They were a little slow to get on top of his symptoms so he had a rough ride today.  His fever spiked and his heart got to a dangerous rate so they had to pump him with more and more drugs.  Poor guy is so drugged, he's not sure which end is up.  He just woke up for 30 seconds and looked at the clock and asked, "Is it 11:00 in the morning or 11:00 at night?" He laid his head back down and started snoring again.  My brother and his wife came to visit tonight and when he walked in he asked Steve how he was doing and he lifted his head and said, "Kumbaya." Ya, that is about how he's been all day.  They are trying to get us ready to leave tomorrow so part of that is bringing us all the meds that he will go home with.  I didn't know I would be taking the whole pharmacy with me.  Two different people came to instruct me on what drugs to give him and when.  When to give the shots and when not to.  Good thing they gave me something to take notes on.  I even wrote on the bottles so I wouldn't forget some things.  Hopefully I can keep it all straight.  Steve has gained about 15 pounds since we checked in.  Hard to believe since he's not eating at all.  It's all water weight.  He is so puffy and soft. They said all that will come right off when he gets home plus some.  He likes to tell people he's going on the CHEMO diet.  Not one I recommend.  I really hope that he forgets most of his stay here or else I think I might have a real hard time getting him to come back for round 2.  Some people say that their stay here is a fog.  I think ever since they started his Chemo on Wednesday, he had been in a fog.  Hopefully that will be the case.

Day 3

Today had it's ups and downs.  Steve kind of had in his mind that he might have a day like yesterday where he had a break in the madness, but not today.  He woke up pretty miserable and it stayed like that most the day.  His platelet levels dropped again today to a level they would normally do a transfusion.  Since he will probably be needing them more than normal, they decided to lower the parameters of when he will receive a transfusion.  They are going to try and ride it out a little longer before they do the transfusion.  He slept most the day.  Once again, the nurses have been outstanding in taking care of him.  They know exactly what to expect and how to treat it before it even happens. They are working round the clock to make sure he is as comfortable as possible.  I am so very grateful to here at the Huntsman where he is receiving the best care possible.  They are outstanding! Some compare Bio Chemo like having the really bad flu.  That comparison seems so minimal compared to what he is experiencing.  He is handling this like a champ!  I'm very proud of him and the strength he is possessing.  You have to be one tough nut to handle this kind of torture. It makes me feel bad sometimes when he is so uncomfortable because I know he is only going through this because of me and our kids.  He said if it were just him, he would just roll the dice and take the risk of the cancer coming back.  But with his responsibilities and love he has for us, he is suffering greater than he anticipated, all for us.  This is the greatest sacrifice anyone has ever made for me and my kids. I love him more than ever for it!  He is truly doing everything he can to fight this wicked beast.  He is a fighter, so I know he will prevail.          

Day 2

Day 2 was much better than day 1.  They told us that the first day would be the worst and so far, they are right.  We had a really busy night last night.  Steve's blood pressure tanked so they were up working on him till 3:00 am.  The cause of his low blood pressure was what they call capillary leakage.  That is where all the fluid they are giving him leaks out of the capillaries and into the tissue which causes his blood pressure to drop.  He was in and out of it most of the night, but it makes me on edge when everyone is working to fix a problem.  So, needless to say, we didn't get much sleep last night.  This morning Steve perked up and seemed to do real well.  It's nice that he has a break in the torture during the day.  We got to go sit outside for about 15 mins.  They don't like him to go out for long because his heart monitor doesn't reach outside and they are keeping a close eye on that.  But it was nice just to be outside even if it was only for a few minutes.  Steve even felt good enough to play video games for a little bit today.  Then it hit with a vengeance.  He got the shakes and chills and then the fevers hit.  It's pretty miserable but they are really quick to treat the symptoms so as soon as they do that he gets knocked out and sleeps for several hours.  We even got a visit from some old friends we hadn't seen in a long time tonight.  That was the highlight of our day today.  2 days down, 3 to go.  Steve is doing great! He has a positive attitude and is handling this better than I had expected.  Miracles are happening every day.  That is one of them.

 

Day 1

Wow!!! What a day!  First thing this morning the nurse came in to tell us that she had orders to get him started today.  That meant that we must have had good news with the bone marrow biopsy.  We just didn't know the details yet but knew we were getting started today, YEA!!! The sooner we get started, the sooner we get to go home.  She just started hooking him back up to all his wires and machines.  The doctor came in and said that it will be about a week before we have the final report from the biopsy but we know there is no other cancer and that was enough information for them to get going.  They did find that Steve has a disease called ITP.  It's an auto immune disease where his body kills off his own platelets.  He's probably had this for a long time but we just found it because they were digging. It's not serious but it will be a bit of a stumbling block going through this treatment.  With bio chemo, it really lowers your platelets so they will have to watch him closely and the doctor said he may have additional hospitalizations during this to do transfusions and things to help his platelet levels.  We were just so grateful there wasn't any other cancer found in his bones.  They got started around 11:30 and about exactly 4 hours later Steve was hit with a vengeance. Everything they warned us that might happened did happen.  We have had wonderful nurses that are so smart and caring.  We feel so cared for and are so grateful to be where we are.  They have the best of the best working here.  They were very good and quick to treat all his symptoms that came on so quickly.  Even though they gave us heads with what to expect, it still wasn't easy watching him suffer.  Steve is a rock star.  He is one tough guy!  He is very humbled and is always telling the nurses and everyone thank you for all they are doing to help him.  This experience will be something that changes a person for ever.  It is something we will look back on and be grateful for the growth.  Going through something like this brings out the good in so many people.  We have seen the best sides of so many people.  Both Steve and I are extremely grateful for the support we feel.  We have been blessed with such a great family, friends, neighbors, and staff that have all stepped up and taken many of the burdens off our shoulders. It's hard to express in words how grateful we are.  We both just hope that some day we can pay it forward and do the same to lift another in their time of need.  Steve is resting quietly now tonight.  One day down, 4 to go.    

Bio Chemo week one

Yesterday was our first day we checked into the Huntsman to get started on Steve's Bio chemo.  It was an exhausting day!!!  The night before neither of us got much sleep anticipating what we were going to be facing the next day.  We met with doctors, nurses, nurse practitioners, physical therapist, nutritionists, and many more people.  Steve got his PIC line placed which turned out to be a bit more difficult than they had planned.  Because he was so nervous, his veins shrunk right up and mad it difficult for them to do.   It took two tries but they finally got it in.  He got all the pre meds and blood draws done.  We had to wait  for all the test to come back before they could get started.  It was taking longer than we had hoped.  They finally came in and told us that they weren't going to be able to start him today because his platelet count was to low.  His last labs that were done he had perfect counts but for some reason they had dropped and they had to investigate further to find the cause.
This morning Steve had to have a bone biopsy.  That wasn't a fun test for him.  They had to go into his pelvis and take a 3 inch piece of his bone out.  They sent it out for a biopsy, so now we wait.  They have put a rush on it so we are hoping to hear by tomorrow morning.  If everything comes back okay then we will start in the morning with his bio chemo.  Now if we start tomorrow we wont be home till Sunday.  Steve is not the best patient, but he is learning patience. There is a lot we are learning right now, the both of us.