Day +10

Today I am day +10 after my transplant. I know I haven't written in a while, but it's because I had those few really bad days likes the doctors and nurses said I would. Fevers, very tired, throwing up, everything. Today, all of that, well, except for  the tiredness, if under control. The tiredness will be going on for a while. I've mentioned it before, but there is a 100 day period from transplant. Kind of like an incubation period. I'll be able to go outside and stuff, but sometimes with my HEPA mask and others without. At least, that's what I'm figuring. The mask thing at least.

For now, I sit here in my hospital room at Stanford, bored. I have things to do, but they don't sound that appealing right now. I just want to be home, with Eric & Brandon. In my own bed. In a place I know. The good thing is, I SHOULD be able to be discharged to home by tomorrow. Fingers crossed! I feel lonely being here by myself. Even before, I was able to have visitors and Eric staying with me. The only thing that changed that was losing the apartment because I was admitted. The only way we had the apartment was because I was there. So, here we are. My family home in Sacramento and me here in the hospital at Stanford. Yay!

I'll be honest, the best news so far is hearing this morning I could go home tomorrow. We just need to see what my labs tonight say. They do labs at 6:00pm. So, we wait all day until they are done and come back. If they are not high enough, they will order another set for 6:00am. Because of the circumstances, they ant to help me get home soon. I will say the doctors here are helping how they can.

Well, today's post is short. Mainly because not much has gone on being here in the hospital and second, because I am getting tired, again. Hopefully I will have more to write the next time I do.

Day +2

Morning selfie with mommy

Today is called Day +2 after my transplant. Everything is looking good and going according to plan per the nurses (RN's) and nurse practitioners (NP's) we have seen the last few days. I am tired. Really tired. And, they say that it will only get worse by around Day +6 to +8. That's when my white blood cells (WBC's) will be at zero and I will have no immune system again. Scary to think, don't ya think?

I still wear my Fitbit. I may not get many steps in each day the last few days, but it's still tracking my sleep. My usual sleep/night is anywhere from 5-8 hours. Closer to 5 usually. The last few days I have been averaging anywhere from 10-12 hours of sleep. Actually, last night alone I had just over 11 hours. That's not including naps. Crazy to think, huh? It shows how hard my body is working right now. I do get in walks too. Actually, we are basically across the street from the Cancer Center, so Eric and I walk there and back for my appointments. I'm sure in a few days it'll be different. But, we are playing it all by ear.

Fun with Nanny & Grandpa Hoover

Something else one of the NP's told us today is that before my transplant, I was in remission, or complete response. The transplant was to help me stay that way longer. We knew that my numbers were really low, but to know that they were really almost undetectable and gone, was nice to hear. Had there been more of the "junk cells" (Myeloma cells) there, I would be on a few other medications right now also. But, because I was technically in remission, I don't have to be on them. I know some people will wonder why I still had the transplant if I was already in remission. The way it was explained to us a few months ago is that the best way to be in remission and stay in remission longer is to have the transplant. And, in order to have the transplant work, it is better to be in remission or close to it. Back when I started my chemo in November 2015, my numbers were at 5000. Within a month of chemo treatments that dropped to 500. And, over time, gradually went down. But the end of April, my numbers were at 0.67. As in LESS than 1. Which, that's almost undetectable. At that point, I was basically in remission, or complete response. So, all of this I am going through now, is still very good. It will help give me a much longer life than had we not found this cancer when we did and waited until I was in kidney failure or worse.

Teether Time 

I get my time in with Brandon too. Not as much as I'd like, but I do get to spend time with him. And, he definitely loves it. He gets so excited to see me. Its the little things like that that keep me going. I've said it before, and I'll say it again...he is my reason. He's the one who brought attention to my cancer, so I believe he deserves the world. Which, he definitely gets. Part of why I am so tired is probably from watching him crawl all over the place. And he's fast. One minute he's right there in front of you, you turn your head and look again and he's across the room. Not only crawling everywhere, but pulling himself up and walking along all the furniture. It won't be long before he's walking unassisted. I can see it. Yesterday he even stood on his own for probably 5 seconds. I was the only one who saw it and couldn't get a picture it was so fast. Eric and I keep saying, he's going to hit all the big milestones right now while here at Stanford. Maybe all. Like his first tooth. We feel like he's been teething since he was 4 months old and nothing is popping through yet. The last few days though, the only thing giving him any relief is chewing/sucking on his frozen teether. Luckily I thought to bring it.

Well, it's after 10pm now. I am exhausted and struggling to keep my eyes open. I wanted to give a little update and also thank everybody, again, for your calls, texts, e-mails, FB messages, IG messages, and help. We really do appreciate it all. It shows just how amazing our family and friends are. Thank you!

Wearing daddy's sweat band

My REbirth Day

Well, the day we have been waiting for came. Today was my REbirth day! Those healthy stem cells they took out of my body a few weeks ago were put back in me in. What was taken out in the matter of 4 hours, was put back in in the matter of 10 minutes! Ok, not ALL of them, but half of them were put back in. They save the other half in case I need another transplant in the future. For me, I know I have my fingers crossed they find a cure before that happens for me. But, until then, I will just keep fighting!

The awesome Kurdish lady who handled my stem cells from back when they were taken out

Today was an interesting day. Honestly, very emotional for me. Emotional because it gives me that much longer here with my family and friends. Especially my little man who really has no idea why we are not at home and living in an apartment for a few weeks. He's still the happy loving little man Eric and I are raising. He is definitely one of my main reasons for fighting so hard. He fought hard to make sure the doctors found this cancer, so I need to fight hard so he has his mommy for a very long time.

The frozen cells

When we got to the Stanford Cancer Center, we waited to be called back. We were finally called back and I was weighed, then taken to my room. It was actually the same room I had when I had the all day chemo the beginning of May. When all of this Stanford stuff really started. My vital signs were taken and then Tara, the dietician, came in to see how things were going. How I was feeling and I or we had any concerns. Of course, Eric was concerned because I haven't had much of an appetite the last few days. Tara reassured us that is normal, but to make sure we find things I can keep down because I will be needing my energy over the next few days to weeks. She also made sure to let us know that I shouldn't drink just water. Making sure we will be replenishing electrolytes as well. For nausea she said that the 7-up we have is great, but to also make sure to schedule eating. Even if it's just a piece of bread or something.

There they go! Flowing back into me!

Stem cells flowing back in

My nurse, Jessica, was awesome. As usual. I've had so many different nurses here at Stanford and they have all gone above and beyond for us. When Jessica came in, she brought in my pre-meds and some saline. Pre-meds were Benadryl and a steroid. The steroid made my legs feel like I had restless leg and the Benadryl made me exhausted! Boy was I tired. About 30 minutes or so later, another team came in with my stem cells. Just two women. They explained the process to both Eric and I. Eric took the pictures since I was going to be a little preoccupied. I'll be honest too, I don't remember much of the process of freezing my stem cells. Mainly because I was a little nervous. And there were so many people in the room. A Nurse Practitioner, my RN, the two woman team with my stem cells, another doctor, and another nurse. Not to mention Eric and myself too. Whew!

Nurses singing "Happy Birthday" to me

There were a lot of rechecks going on also. To make sure I got MY stem cells and not somebody else.  Before I got my stem cells though, they gave me IV Zofran. Once that had been going, and all the rechecks were done, it was time to connect me to my stem cells. During this time, we just sat there. For 10 minutes. Watching as my stem cells made their way back into my body. Once that was done, I just sat there and rest. My nurse monitored me to make sure everything was ok and I got a little extra potassium because my potassium was low. Eric went back to the apartment for a minute because we needed some lotion. The water here is really making our hands dry from all the hand washing.

About 15-20 minutes after Eric got back, my nurse checked on me to see if I was awake. I was, so she said she would be right back. This part really got me choked up, but I think I held it back well. My nurse and a bunch of the other nurses in the unit came in with a small cake and sang "Happy Birthday" to me. You always hear about this stuff, but when it's you, it's so much more. Of course, it's not my REAL birthday, but it is my REbirth day. A second chance so to say. Even though my MM was caught very early, before any symptoms, we know it could have been worse had it not been found so early.

With my AWESOMELY delicious cake

Something Eric just told me. I knew we had enough for 4 transplants. Well, today they gave me double the stem cells. They don't want them to go to waste, so I got more than a normal transplant. Like I said earlier, I got half of what was taken from me a few weeks ago. Now that's pretty cool.

Because I still need to make sure my mouth is cold, popsicles! Tara, the Dietician, recommended it!

Well, I am exhausted again. This will most likely be happening for the next few days. So, I am off to bed. I can not thank all of you enough for your continued support, prayers, happy thought, good juju, and everything else. We feel so lucky to have all of you in our lives.

Another Eric Interruption

Well, all the chemo treatments are done until the cancer comes back, which should be several years down the line. Now it's just maintenance, slowly reeling back over the next month until she's back to only taking multivitamins and a cup of coffee in the morning.  With the assistance of returning her stem cells, the Neupogen injections will help rebuild her blood generating bone marrow. So, we are pretty much done. After the transplant on Monday, her main focus is recovery. We will be monitoring her white blood cell count. When it reaches a certain level, we pack up and return home to our exciting lives.

Today, she is cold and tired. She's not sick, not hurting, not sad. She is just cold and tired. So, she is relaxing, barely asleep - barely awake. Chillin. Well, unchillin. We all know how fortunate she has been. Her treatments have all gone well. Compared with other cancer patients, she's had relatively minimal symptoms. We don't minimize the pain and discomfort that she has had. But, Krissy has made an effort to keep her condition in perspective. I believe this has helped us to remain so positive for the majority of this situation. Sometimes you have to throw on a smile to get happy. Krissy just is happy. Now it's time for a little rest.

Both California State Parks and Costco has bent over backwards to support and assist us. Obviously, there are legal requirements that our employers have to follow in situations like this. But, we can tell that both wanted to. We are extremely grateful to them and our immediate supervisors. It is easy to get into solution mode, tackling an illness, and forgetting to say thank you to all of those people that held you, carried you, forgave you, and in general made the situation at least slightly more manageable. Everyone, thank you so much for everything that you have done for us. You gave your time, financial assistance, advice, encouragement, distraction, motivation, and just basic humanity. The longer I am on this planet, the more convinced I am that life is about relationships. We have all heard of the five basic senses that make us alive, things we sense, we feel: sight, sound, touch, smell, taste. There is evidence of a sixth sense, intuition. I argue that the more evolved of our species has a seventh sense: conscience - the feeling of right and wrong. If you ask a little child at a park why he/she is feeding bread crumbs to the ducks, the child's answer might confuse you as much as the question confused them. The child will always have an answer for the benefit of the ducks. 

"The ducks are hungry. They need to eat."

As we mature, the answer evolves into what feeding the ducks might do for us. 

"It makes me happy to feed the ducks."

It simply is just the right thing to do - to feed the ducks. It doesn't benefit the feeder. We have seen this seventh sense in all of you since this process began back in August 2015. You have reached out and feed us with whatever bread crumbs you have had simply because it was the right thing to do, without obligation or reward in doing so. The greatest reward for us has been to be able to see such an outpouring of humanity. Our friends and some strangers exercising their seventh sense, their conscience, has been overwhelmingly rewarding to us. Thank you all for your kindness and generosity. 

We were fortunate that I was able to spend the night in Krissy's room on Thursday night. She was in a two person room. But, she didn't have a roommate. So, they said that I could stay until someone got admitted. They weren't expecting anyone. It turned out to be a great night. Krissy got her overnight chemo treatment. They let me watch it and participate in her care. On this night, I got a message from one of Krissy's old friends from SoCal who now lives in Switzerland (Melinda Moriancumer) asking for my perspective on things. So, I responded with "An Eric Interruption" on Krissy's blog. I told her that Krissy and I had the idea of printing her blog in the form of a book. And, I've been writing my perspective privately. We will publish both books as a companionship. The storyline will end this month when the treatments are done. Krissy wants to make a second book regarding her life in Response to Multiple Myeloma treatment. They call it Response and not Recovery because it will come back. MM is not curable at this point. It always comes back. Basically, her genome is coding to make these cancer cells. So, Krissy and I were one of the fortunate couples that were allowed to stay together for this particular treatment. What made this even more important for both of us was that it was going to be our first night away from Brandon - ever. It was better that she and I could be together during this difficult milestone. I woke up somewhere around 5:00am, responding to Melinda's post. I decided that before I could write, I needed coffee. When I walked the halls of the hospital, I found some that were not as fortunate as I:

Over the week or so that we have been at Stanford this time around, Brandon has been growing in so many ways. He flies around the ground now, crawling like a 'normal' little boy. The army crawl is a thing of the past. He used to just drag his legs behind him. His shoulders are incredibly strong. Who needs legs? A couple weeks ago, Brandon started assisted walking. He would hold our hands while taking a few careful steps forward. About a week ago, he started walking along the edge of the couch.   Now, he will move from one piece of furniture to another. He spent most of today playing with my parents. He became one of those kids that didn't want to bother to eat or nap because he didn't want to stop playing. Day by day, he is becoming so much more independent; therefore confident. Our number one goal for him is a healthy self-esteem. So, to see him like this is very satisfying to the soul. When the day wound down, he finally ate. And, when it came to going to sleep, despite how proud he is of his accomplishments, he still wanted to cuddle with his mommy; the one he cherishes the most.

Needless to say, this has been a lot to handle. But, thanks to you for all of your contributions, you have added joy to our souls. You've eased the burden and helped my sweet wife stay the silly, caring young woman that I married before we even knew what Multiple Myeloma was. This one's for you!

Melphalan - Last Chemo Before Transplant

Waiting to start everything

Today was my last chemo before my transplant. We got to the Cancer Center (we took the 5 minute walk across the street) and got to my room where I was started on saline. Not like I wasn't on enough already since I have that awesome hydration on wheels like I did about a month ago. I've had to use the restroom probably every 90 minutes to 2 hours. But, it's good. Keeping my hydrated is keep the chemo going through me. It won't sit in my bladder and give me an infection. A little bit after the hydration started, I was given Zofran IV. A smaller bag than I am used to when I go in for these appointments here. Then, I was given Decadron. Another anti nausea medicine. A steroid anti nausea. At the same time as I got that, I started chewing and sucking on ice. The reason for the ice is to kill off any receptors in my mouth so the chemo didn't give me mouth sores. That wouldn't be good if I got any. The mouth sores could cause me to get an infection then fever which would have me admitted to the hospital. Not going to do that.

Saline and Zofran

About 30 minutes or so later I was started on the Melphalan chemo. Throughout the Melphalan I still sucked and chewed on ice. The Melphalan went through for about 30 minutes. Probably the fastest chemo I have had through IV. The time today went really fast. Felt like we were in and out of there. Which was nice. I was still able to walk home. It's only a 5 minute walk, like I said before. And, today wasn't as hot as it was yesterday. So, Eric and I took our time. The only thing with me is, I have to wear the Darth Vader mask (my HEPA mask) and it makes it harder to breath. But, I still want to get some kind of a workout in. We will have to wait and see how I feel on Monday after my transplant. May have to have Eric come back to the apartment and bring the car over. We shall see how I feel afterwards.

 Ice chips

Cold mouth full of ice chips

Well, so far so good though. I'm not really having any side affects yet. Which is good. I know come Monday, or a few days after, I will be really tired. My nurse today said I will most likely be resting a lot. She also said that wait until about day +11 or so after transplant to start getting some exercise since I will most likely start to feel better then. We just need to wait until my white blood cells come back up and my immune system is ok before I am released to go back to our home. I think what we will definitely do is leave the day after I am cleared to go home. That way we don't have to worry about traffic since all of my appointments are in the afternoons.

Melphalan Chemo

So, for now, we relax. Make this apartment our home away from home. And wait for my rebirth day. Then, we wait for my white blood cells to come back up. I can't wait for all of this to be over and be back to normal. But I won't rush it.

 Resting at "home"

Family music time after dinner

An Eric Interruption

This experience so far has been like a series of musical movements within a grand composition with which we can only anticipate its climax.  It has been a lot like listening to a classical piece from Beethoven.  As Krissy and I roll along adjusting to the tune, the music suddenly stops, switches gears, and we are left to pick up our seats, move into the next room, and adjust to the new score.  I say all of that to say this - it has been an emotional rollercoaster for both of us.

Every time we got discouraging or distressful news, it hits us hard.  When Krissy was diagnosed, we both cried together, weakly shaking and sobbing.  I imagined her suffering while the cancer slowly wasted her body away.  I thought about all the anxieties and fears that would run through Krissy's mind as her body helplessly deteriorated and died.  Would she fear death?  Would she feel like she failed Brandon?  There were going to be so many important events that she would miss.  I saw my beautiful wife lying helpless, losing weight and spirit day by day while our little baby cried for his mommy.

"Mommy.  Mommy.  Up!  Up!"

"Mommy can't pick you up, son.  Come here, I'll pick you up and we can sit with mommy on her bed."

I thought about the trivial activities that to Brandon was anything but trivial.

"Mommy, come and color with me.  Draw me a helicopter like the one you flew in when you were in the Army."

"Mommy can't draw right now, Brandon.  How about you and I draw a special helicopter for her.  We can color it green and draw the Hawaiian Islands with it.  Then, we can show her and see if we did it right."  Of course, we did it right.

When kindergarten rolls around, there would be no mommy to walk Brandon to class.  There would be no Krissy to help me pick out his outfit for his very first day of school.  There would be only me and Brandon having mommy's special pancakes for breakfast.

"Hey bud, when we're done eating, I need you to help me pick something out for you to wear to school."

"I could wear the Angels baseball shirt.  Mommy used to like the Angels, right?"

Of course, I thought about myself.  There is no way around that.  A couple days after the diagnosis, I stood with my hands on the kitchen counter, head hanging low, crying.

"I don't want to lose you.  I've already lost more than anyone should lose in a lifetime.  I fought so hard for us.  Now, you're leaving."

It seems with our partnership that whenever one of us is weak, the other is strong.  Always.  We are truly a team.

"Eric, I'm not going anywhere.  I'm going to fight this and win."

Always the optimistic, Krissy.  Me?  I'm always the practical, logical, one.  I am Commander Spock to her Captain Kirk.  We are truly a team.  Over the next year, Krissy proceeded to prove her point.  She exceeded all expectations with every treatment and test.  Brandon proved to be a concentrated source of pure joy for us.  From August until today, for almost a year, one day at a time, Krissy has followed the council from her medical staff.  She has taken her medication exactly as advised.  She has chosen to eat healthy (with the occasional indulgence - hey, she still has a life to live).  Despite having a dissolving lumbar, she gets the exercise that strengthens her without compromising the integrity of her injuries.  She surrounds herself, online and in person, with only those that serve her spirit.  She knows that she has a responsibility in her recovery and she takes it very seriously.  When she was diagnosed, the literature said she had somewhere from three to seven years to live.  Now, it is looking like ten.  Ten years from now, it will likely be more.  The way Krissy has taken control of this situation will enable her to be healthy and strong long enough to bury me.  I think she'll handle it better than I would her.  Every day I am acutely aware that I am a fortunate man, and tell her all the time.  I think she believes me.

BCNU - Chemo

Here I am. Sitting in a hospital bed for my overnight hospital stay for this new chemo BCNU at Stanford. I'm in the main hospital building. Not the regular place, which is the Cancer Center. I had to be here at 4:30pm to start 4 hours of IV hydration before the nurses started the chemo. Eric & I got here, checked in, got my room and found I have a huge room all to myself. So, Eric is able to stay with me overnight. If I had a roommate he would have to go back to the hotel. 

Just got my room

After the usual checks of height, weight, blood pressure, temperature, and heart rate, my nurse came in and started to get me ready to be connected to the IV hydration through my catheter. I also ordered my dinner. Dinner tonight was cheese ravioli with marinara sauce and to add in a little protein, a side of black beans. I am restricted, as of checking into the hospital, on what I can eat. Meaning I am back on the low microbial diet, will have to wear the Darth Vader mask when I leave my room now and when I am discharged tomorrow, I will have that awesome hydration on wheels bag again. I will get rid of the bag on wheels after I get my stem cells on Monday and it will be replaced with a fanny pack one. Yep! I will be sporting a fanny pack. I think the last time I had one of those was in 6th grade. It's been that long. 

BCNU chemo has started

I had my dinner while getting my IV hydration. At about 9:30pm, my nurse started to give me some anti nausea medication through the IV. She also gave me my regular medication I take every day. at 10:30pm She came in to start the chemo. She already had the bag up on the stand and it was connected to my catheter, but it wasn't turned on and going through my system yet. She confirmed my name, medical record number and my date of birth and turned it on. Then, about 10 minutes into my chemo, she came back in introduced us to my new nurse because she was going home due to overstaffing. Lucky for her, but we were both getting acquainted to her. We really liked her. So far, my new nurse is nice and very helpful. 

My rock and me

About an hour into my 2 hours of this chemo, I started to get the jaw pain. So, I pressed the call button and she came in to give me some Fentanyl for the pain. I will tell you this, this is the first time ever that I have felt kind of "high". Maybe more euphoric. Basically, I started to feel good. Like, really good. And, my pain went away! Needless to say, it worked! Now, it's tough because I am exhausted. I can barely keep my eyes open. Then again, it is about 12:30am and I've been up since 7am. So, that's understandable. 

Well, there is a somewhat brief yet kind of long update for my 1st day of treatment.