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. 

Getting Ready

Here we are. Our last day at home before about a month away at Stanford. Both Eric & I have said we feel a lot more ready than we have. The first trip we didn't know what to expect. The second we thought we may be there for a week and it was a quick "Ok, we need you here at 7:30am tomorrow" trip. And, we were only there for a day. This time though, we know we will be there for at least 20 days. Maybe longer. My actual transplant is on June 6th and they say I'll typically be there for at least 20 days after. It really depends on my levels and when my WBC (white blood cells) come back up.

This time, we had a lot taken care of the few days before we need to leave. Paperwork is all put together. Laundry is done, or almost done. We cleared out the cabinets and refrigerator of expired or going to be expired items. Have our usual dog sitter in place. The toys Brandon is going to need. We even went to CostCo last week and got a whole box of diapers and wipes to be ready. The only things left are to pack, which we will finish in the morning, and load the car. We plan on loading the car tonight. Well, at least start to load it tonight. Less to do early in the morning.

We have an early wake up too. We decided last week that we want to try to be at Stanford an hour early. So we don't feel rushed. Our plan is to leave at 9am for my 1:10pm lab appointment and 2:15pm Dr. W appointment. If we get there early, there's always the Stanford Shopping Center we can walk around. Of course, lunch will be needed also.

We have a few things planned for tomorrow after the appointments and for Thursday, before my overnight hospital stay for chemo. One thing is going to Pacifica. Taking Brandon to see the beach. I'd like to try to get some family pictures of us on the beach. So, note to self, charge the Nikon battery & bring the tripod! Can't forget those items.

It may sound weird, but I'm kind of excited for this trip. Don't get me wrong, I am nervous too, but I'm excited because this is really the end of this part. The beginning of my "complete response". The equivalent of remission. My cancer will come back. They (the doctors) say it can anywhere between 3-7 years. Sometimes, in some cases, it could be longer, or shorter. I, personally, am aiming for longer. Brandon will be anywhere from 3-7 years old before it may come back. Or he could be older. Maybe even graduating high school by the time it does. We have no idea. But, I will be doing everything I can to make my response be longer.

Now, I am off to spend time with Eric and Brandon while we wait for my cars service to be done. Then, off to start the packing.

Another Friends Post - Kelly

It's been a while since I've written about a friend of mine who changed my life. Or who I knew would always be apart of me no matter how long we would be apart. The way I met Kelly was kind of funny. Especially since I was always the shy quiet girl in school.

Me, Kathryn, Kelly, Valerie, & Elisabeth at Disneyland

It was the first day of my junior year of high school. It was second period Spanish class with Mrs. Evans. Kelly and I sat next to each other. Well, I sat behind her. Like I said, I'm usually the quiet shy girl at that time in my life. Kelly introduced herself to me and we started talking. We hit it off and found we had a lot in common. Sports, being outdoors, love of animals, movies, etc. It was the perfect friendship. We ended up being on the cross country team together too. I had never been in trouble in school until then. Well, we really weren't in too much trouble. Nothing like detention or suspension. We talked so much through Spanish class that Mrs. Evans separated us. Twice! The first time she put one of us in the front row and the other in the back row in the same row. We still found a way to talk. Then, we were put one in the front row on one side of the room and the other was the back row of the opposite side of the room. It was a little more difficult to talk, but we found a way.

Kelly & Me behind Acapulco

Within the first week of school, we were hanging out outside of school. When we were, it usually involved running, rollerblading or bike riding. We lived a few miles from each other and we would either meet in the middle, I would go to her or she would come to me. Most of the time I would go to her since we would meet at her "uncles" video store. It was a close family friend of hers that she called her uncle. We hung out there a lot. And, that is also how we became friends with a crew on the Browers (later became AMR) ambulance in the same shopping center. We had some great times hanging out at the video store and with our friends Tim and Shane at the ambulance station.

Whenever it was raining, you better believe one of us would call the other and we would either go running or bike riding through the puddles around her house. It usually meant I was riding my bike to her house in the rain. It was so much fun! Sometimes we would do both. Bikes and running. We would find fun in anything. One great thing was watching Top Gun so loud that it would vibrate the house.

Another from behind Acapulco

Kelly made cross country much more fun. I wasn't really a fan of running, until I was running with her. She would crack jokes or mimic our coaches. One thing at to do with "hills are good"! A play on the "pills are good" line from Dumb and Dumber. We ran hills all the time in cross country since that was part of our races. Anytime she would say it, it made me laugh. I'd lose my breath from laughing so much and would have to stop for a minute or two, but it was things like that that made running much more fun. Because of her, is why I ended up running outside of school and our workouts and meets more. I did it when I was younger since I would do Turkey Trots and Triathlons, but I hated running.

Sometimes we would go places with either one of my parents or one of hers. One time, Kelly, her mom and I went to the Westminster mall and ended up looking at puppies there. Kelly really wanted a dog. And somehow she was able to talk her mom into getting one. We played with a few different Golden Retriever puppies and she eventually picked the girl. The whole way home we brainstormed on names. I don't remember when it was finally decided on, but we welcomed Hannah to her family. Hannah went almost everywhere with us. Our usual runs or bike rides now included walks with Hannah. And once Kelly had her license, we would drive to parks and even the beach. Taking Hannah on walks and having new adventures.

Me, Kelly & Hannah at the Hunting Beach Wetlands

Eventually my high school graduation came. Kelly was the one friend I invited to my graduation dinner. To show how goofy we could be, we got wired on iced tea. I guess between the caffeine and the sugar added, it ended up being a bit much for our systems. We had so much energy and just started being goofy afterwards. Running up and down the sidewalk behind the Acapulco in Long Beach that bordered the bay. We would jump up and do the leprechaun heel kick and making funny faces. Looking back, we were kind of cheesy, but I wouldn't have had it any other way.

We had a great summer, then I started college and she was still in high school. It wasn't as fun without her. We still saw each other when we could. But between my water polo and swimming workouts, games & meets and her cross country and track workouts and meets, we didn't get to see each other too much. That, unfortunately, was the start of our drifting apart. After two years of college, I joined the military and went to boot camp. I did hear from her. She was one of the few who wrote me probably once a week.

Valerie, Kelly, Me, & Alora at the Cerritos Mall

I got back from boot camp and medic school and we hung out a few times. Unfortunately, being away and us growing up more, made us drift apart. In 2001 I moved to Northern California. It was about a year or so after she got married to a pretty cool guy in the Marine Corps stationed at Camp Pendleton. We tried to keep in touch through e-mail when I moved away, but it got few and far in between and eventually we didn't hear from each other again. Until a few years ago when we found each other on Facebook. We spoke a bit, then one of my trips to Southern California we met up with our friend Valerie for dinner and a walk around the Cerritos mall. It was nice to catch up on what we had been up to since we last spoke. She has 2 kids now, a boy and girl. They are amazing kids.

Since my diagnosis, she has been there more. Texting and calling and even e-mailing on Facebook to see how I'm doing. It's really nice to have an old friend back. Just like it was amazing to get Kristy back in my life at just the right time, it seems I've got Kelly back at just the right time also. We may not hang out since she is in Texas and I am in Northern California, but the occasional talks really make my day. It reminds me that no matter how long between talking to a friend there is, I can always count on my friends to be there when I need them.

Hair Today, Gone Tomorrow

After we shaved my head

Since over a week ago, the day after my stem cells were taken out and I started to have my hair coming out of my head easily with no pain, I've thought about hair. Long ago, before I was even ever diagnosed with cancer and had to go through chemotherapy, I had thought of shaving my hair off. It was actually just over 5 years ago. When my friend Kristy was diagnosed with breast cancer. But, I chickened out. I figured I would look weird. That I would have an odd shaped head or bumps or something. Fast forward 5 years and here I am, shaved head and now basically bald. I have a few small hairs left. But I am sure those will all come out after my next chemo treatment before I get my stem cells back.

No hair, don't care

People value their hair. Some more than others. I will be honest, I was one of those people. Yeah, I've cut my hair pretty short before, but never been brave enough to shave it off, until now. First, I decided to go and get a funky hair cut. One that I do believe I will get again once I have hair again. It may even be my new go to hairstyle. I loved it that much. Then, just over a week ago, when my hair started coming out, Eric shaved my hair off for me. I will be honest, I was scared and nervous. All those thoughts I had before, were still there. But, it had to be done. Once it was done, I actually liked it. It looked good. I felt a little like Demi Moore in G.I. Jane. I had a lot of friends tell me Sinead O'Connor had nothing on me. Eric kept telling me I looked really sexy. He loved the funky hair cut I got before, and he really loved my shaved head also. Now, it's bald. White, since it's never seen the light of day. I need to be careful with going outside. Which is where wearing hats and beanies comes in now.

Bright pink wig from Pink On the Brink at Unconventional

Right now I have only 2 hats, both black which really will not be ok once it gets really got this summer, and a beanie I have been wearing. The beanie is a thin one I've had for years and mainly wear it indoors to keep my head warm because my head gets cold really fast. It's amazing how fast it gets cold. I have a friend who has sent me some head scarves (which her sister gave to me) and she will be sending me more soon. I have another friend, Karen, who took to group she is in asking about wigs and hats and such, and she is sending me some hats and wigs which came from another lady who had cancer and lost her hair. She said her hairs finally growing back and she doesn't need them anymore. I also remembered I had an old bright pink one from my first and unfortunately only Perfectly Posh Unconventional even two years ago in Las Vegas. It needs a little work. A brush or comb to go through it, but it's really fun! Another Posh sister Jen sent me an old purple one she had. That one just arrived today and I wore it for about half the day.

I really like this purple one, Eric tried it too

I can't wait to see what comes from Karen. I am definitely going to bring some of the wigs to Stanford to wear when I go in for my check-up appointment with Dr. W, my labs, my chemo days, and of course getting my stem cells back. I'll have to see which one I should do for that day. Should I go normal and calm or funky and bright? Decisions decisions. I will only be able to decide once I see all that I will have available. Of course, there's always a beanie, hat or head scarf. So many options. So little time. What do you think?

Loving my beanie, too

What I've learned in the last week is, it really doesn't matter about your hair. It will grow back. Once it's back, I can do anything with it. Try different styles. maybe different colors. Still wear wigs, hats, beanies, or scarves. The sky is the limit. At this point, I am keeping my options open. And, realizing that hair isn't everything.

Rings

Rings. Men and women wear them. Women will wear them as regular jewelry, as some men do also, but men & women wear them as a sign of being married. Usually on the ring finger of our left hands. Some married couples take the ring wearing for granted. Others wear them all the time. Sometimes, some men can not wear them or choose not to wear them in their jobs or professions. One I know is a cop. There are some cops that don't wear it because they don't want the criminals they are contacting to know they have a family. Somebody to come home to. If that person they contact doesn't like what the cop did, they may try to come back and harm that cops family. I learned that from an ex boyfriends father who had been a cop. He didn't wear a ring because of who he contacted each day. Another profession that usually doesn't wear a ring is somebody in construction. Which is very understandable. You don't need that thing getting caught on anything and ripping your finger off. A replacement, should you be brave enough to do so, is to get a tattoo ring. For me, I thought of doing that before, but at the same time, you get somebody's name on you or something in those terms and then soon after the relationship is done. So, I opted to not have a tattoo ring. Then again, in my profession as a dispatcher, I can wear my ring. Eric can not wear his because he can not have metal on in the area where he prepares and works with food because it may get in the food.

Our wedding day, August 2, 2013

All that said, I believe many people take wearing their wedding rings for granted. It's something they wear and don't think of. They don't think of the symbolism of it. The fact you and your spouse stood up in front of your family and friends or just friends or just family and professed your love for each other. Vowing to love through thick and thin, sickness and in health (which is where we are now), oil death do you part. Ok, Eric and I didn't have the typical vows. We wrote and said our own. He memorized his. I didn't, but probably better because I would have rambled because I would have forgot mine being in front of all out family and friends. But, you get the point. The ring, worn on our left ring finger, symbolizes our marriage. Eric hates he can not wear his at work. He understands why, but he hates it.

He has a death grip on my hand

For the last month Eric has been able to wear his every day. Why? Because he has been off work on caregiver status. A full time job in itself. Because of my transplant process that we started at the beginning of May, there are a lot of things I can not do. The last week and a half (and we still have another half a week), I have been able to do some things I used to do. So, I've been able to help him more than the first few weeks. But, he has been able to wear his ring every day. Which has made him happy.

In my post about the aphresis day, I posted a picture of my hand on his with him sleeping on my lap. That picture shows many things. For one, just how exhausted he was at that point from doing everything. Taking care of Brandon, the dogs, me, etc. The second thing was it shows the love he has for me. That he is there everyday with me through this whole process. Helping me. Going to appointments with me. Making sure I am doing ok. Those were the two things I took the picture for originally. But I recently thought of a third thing. It shows both of our rings. Something we don't always see because of his job. Because he doesn't get to wear his ring at work, he will sometimes forget to put it on when we go places. But, since being off to be my caregiver, he has made sure he puts it on every day when he wakes up. So, the picture also shows our love we pledged to each other on August 2, 2013 in front of our family and friends. For the last month, we have been able to wear our rings together. At the same time. Everywhere we go. That is something that makes us happy. I am very happy I was able to capture that picture the day my stem cells were being taken out. The only other picture of us wearing our rings at the some time was on our wedding day.

Our rings mean something to us. It shows what we worked so hard for. How about you?