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?

Low Key

Darth Vaders daughter...haha

It's been a few days since I wrote. No real good reason other than, nothing is going on. We are at home. No appointments. No home treatments other than the daily Heparin flush of my Hickman line and the weekly change of bandage around my Hickman line. There really hasn't been anything significant going on. Just the continued loss of my hair. But, nothing that wonderful there. It's been nice not having any appointments. I have had chemo & lab appointment every week since November. Then, once a month you add in a check-up appointment with Dr. H. Not to mention in March when we started to go to Stanford. On top of all the well baby checks from Brandon. Those stopped in April at his 6 month well baby appointment until he turns 1 year old.

My supporters...hubby, brother in law, brother, & a friend of Eric's

What we've been doing since coming home about a week ago from Stanford is just enjoying our time together and with Brandon. Giving him somewhat of a "normal" baby life. Letting him play, cuddle with us, going on walks, visiting friends and family, and just relaxing. He's started to move so much more. Not just his regular "Army" crawl. He's full on crawling within the last week and even trying to walk. He does walk pretty well holding on to our hands or the table or couch or even when inside his pack-n-play. He's a big time mover. We really can't keep up with him. It's nuts! And, at only 7 1/2 months old. He's definitely a smart boy.

 A brother in law supporting me

My cousin Brian supporting me

The dogs have been very well behaved too. We've been able to spend more time with them and we can tell they really appreciate it. They love having their baby brother around more too right now. Especially since he's moving around more. Especially Azul. He follows him around. Sometimes he will keep a fair distance. I think it's because he's not too sure if he likes that he's moving around more or not. Sorry Azul, it's happening whether you like it or not. See, Brandon has been wanting to be in Azuls crate. Whether he's in there or not. And, Azul isn't so sure about that. He gets a worried look when he's in there and Brandon comes that way. So, we are limiting that. We don't need Azul to snap. We don't think he would, but you never know. It's just easier to stop it before it happens.

Trouble

As of now, we have another week here at home until we go back to Stanford. So, we are making the most of it. Other than 2 appointments this week (an eye check up and one to get Eric's EDD paperwork done), we are getting out and going to places somewhat nearby. Just to get out of the house. Once we get back to Stanford, we will make a trip one day before I need to wear the Hepa mask again to the coast. Maybe take some family pictures on the beach. I'll have to teach Eric's parents how to use my Nikon for it. Or, we can just use the remote we have. Note to self, add tripod to my packing list.

Well, I need to get Brandon in the bath. Then it's bath time for me afterwards. And bedtime for the munchkin. I'm loving having a little downtime right now. And being able to help out a little around the house. Eric still has to do a lot of it, but I am helping where I can.

Hair Day

Family Photo

Today became hair day. Well, after travel day. We left Stanford to drive home at about noon today. Before that, when I woke up, I was running my fingers through my hair. Now, since I cut my hair to the awesome funky short hair cut, I haven't had any shedding. This morning, I had some clumps come out. It also happened in the shower while washing my hair and then while combing my hair. I showed and told Eric what was happening and we decided that when we got home today, we would shave it. While driving home, I had a few more clumps that came out while running my fingers through my hair. Not huge clumps that left me with bald spots, but enough that I knew it was starting to fall out. So, it had to happen.

Clumps

We got home, unloaded the car and then relaxed a little bit with the dogs and then with Brandon in his room. Finally, we set everything up to shave my hair off. Eric got his clippers out and the sheet he uses as a drop cloth for cutting his hair. I set a chair down and added a blanket and old pillow covered by a towel so I could see myself in the mirror. Once Brandon was situated with his toys on the floor, we got to the shaving. It was a weird feeling to have him shaving my hair off for me. Usually, for anything hair related, I would go to my friend Colleen and to the salon she works at. But for this, it was a need to do now and Eric really wanted to do it.

Before

We did a few different pictures. I took a before picture. Of how my hair was. Then, as he was about to shave my hair, we did a goofy picture when honestly, he kind of looks like a psycho. But it was funny. A few others were while he was actually shaving it of me with a scared look and then a crazy long on top only and shaved around the sides. We did a mohawk too before we shaved off the rest. I was scared to. Not sure why. It's just a crazy mohawk. But for some reason I didn't want to. Then, I said to myself, "What the heck! I'll never have it again." And told him to go ahead and do it. After we got a picture, off it all went. One big clump of hair. There in his hand.

 Crazy eyes! 

Eric finished up my hair. Making sure to get any extra spots taken care of and to even out my hair. Then, we were done. My hair was all over the drop cloth. And my hair felt even lighter than when I went to the funky cut. I was a little worried too how Brandon was going to take it. What he was going to think. The other cut I wasn't so much since I did pull my hair back a lot. But this time. This time all my hair was going to be gone. But, he could care less. He still got a huge smile on his face and wanted his mommy. The dogs didn't react differently either. You never know with them. But, they still wanted some love from their mommy. I swear, sometimes I think they know what's going on and how I may be feeling. Before we left for Stanford on Sunday, Azul was almost attached to me for a few days. Sitting as close as he could to me without sitting on me. Kahlua wanted to be sitting with me.

Mohawk

After dinner, I was starting to get really tired. So, since it was already about 8pm, we decided to come upstairs to really wind down and go to bed. As you can tell, it's almost 10pm and I am awake. I had decided to take a relaxing bath for my back and while I was waiting for Eric to get upstairs to take care of Brandon, I was sitting there playing with him. This was funny. He was laying on the floor, looked at me, and just started to giggle. Full on belly giggles. I think it was the hair. I think it really got him going. I didn't have to tickle him or make silly faces. He was just giggling. And cooing. And talking away. I love that my new hair doesn't bother him. Especially since there is still one more step. The step where even this buzzed head will be falling out and I will be like Mr. Clean!

 Finished!

My Rock! My "Twin"!

Now, I need to figure out how to wrap some scarves around my head. I will embrace the baldness, but at the same time, my head has never seen the light of day. It's white. Very white. It will burn. And, it's hot here. Today it was in the 90's, and this summer it will only get hotter. So, light scarves and some hats it is.

Writing

Apheresis

Leaving for Stanford

Since last Wednesday we have been waking up early to go and do labs to see where my white blood cell count is at since having that high dose of Cytoxan chemotherapy about a week and a half ago. Over the weekend we had to go all the way down to the Morse Ave Kaiser to have my labs done since Roseville wasn't open. The part that wasn't open is the Oncology/Infusion Treatment Area. I mentioned how on Saturday I had a big jump from 0.3 on Friday to 1.1 on Saturday. Well, I had an even bigger jump from Saturday to Sunday. Sunday my count was 6.2! I didn't know before we got the call from Stanford to tell us to come in today. We had just gotten home from doing labs, stopping at Old Navy & Walgreens and were about to eat while waiting for my friend Julie to get to our house so we could rest. Eric was able to hear Vickie, the nurse who called, on the phone while I was talking to her and both of us, at the same time, said "Holy crap!" when we heard the numbers. Vickie told me that I could stop wearing my hepa filter mask except when I go to Stanford and am around the construction and inside the cancer treatment building since there are people sicker than myself there. I was also told to stop taking 2 of my medications and that I could go back to eating anything. We could eat at restaurants now. Well, at least until the next step.

 Sitting in the drivers seat with daddy on a rest break from driving

 Goofy time with mommy on a driving break

Ready for bed 

As soon as I got off the phone yesterday with Vickie, Eric & I needed to decide if we were going to wake up at about 3am to drive to Stanford in the morning or to leave last night so we could sleep in a little longer. My appointment to do labs was at 7:15am. We decided to drive last night and we got a hotel room for us and Eric's parents. It worked out very well. We had a great room and Eric and I left while his parents and Brandon were able to sleep in and stay in the room until check out time. After labs, which went really fast, we had a few hours to kill and went and walked around Target. Then we stopped at Starbucks for some coffee. Since we didn't have anything else to do or anywhere else to go, we went at sat in the shade in the car in the parking lot of the Stanford Shopping Center. We were there for about 15 minutes when we got the call to come back for the apheresis. For the stem cell collection. Luckily, we were only about 5 minutes away.

Ready to go! All hooked up and starting the extraction

So sleepy, always by my side

Once we got back to the Infusion Treatment Area and they hooked me up and got the process started, it was just after 10am. The process of extracting my stem cells was going to take about 4 hours. So, there I sat. Connected to this machine that took my blood and spun it really fast to make the stem cells fly out into the collection bag. After that, my blood was sent back into my body. In essence, it was an oil change. Sitting there having my blood taken out of my body and put back in, I got really exhausted. I could barely keep my eyes open. At the same time, it was tough to fall asleep and be comfortable because this process was making me freezing. I ended up having 4 blankets and 2 heat packs on me to keep me warm. I think I was finally able to really sleep for the last hour. It wasn't a true sleep, but at least I was able to rest.

Sleeping with 4 blankets and 2 heat packs

Vickie unhooked me, flushed my catheter and as she was putting together her paperwork and items to be sent off for me, she said she believes we got enough for two transplants today. But, either way, she would be calling us in a few hours (it was just after 2:00pm at this point) to let us know if we had to come back in tomorrow or if we were free to go home. During all of this, I sat there, trying to get feeling back in my legs to walk decently to get back to the car. Laying in a reclining chair for 4 hours without getting up having your blood taken out of your body and put back in and not eating or drinking anything makes for one tired useless body. Another nurse brought me some apple juice and graham crackers to help get some sugar back into my body. Finally, we were able to leave and go check-in to the H.O.M.E. Apartments.

We got to the apartments, checked-in, got everything inside, had some lunch and Eric & I were resting when we got the call just before 5:00pm. Vickie called to let us know that we were FREE to go home! That we got more than enough stem cells for two transplants. Now, I am not sure of what the units are, but all we needed was 4 and we got 9.4. That is WAY more than enough for two transplants. Did I mention that my white blood cell count today was at 17? That's an even bigger jump from yesterday than it was from Saturday to Sunday. My body is fighting this nasty disease.

So excited to get to go home early!

Now, we are having a relaxing evening. Just sitting in the apartment, playing with Brandon, visiting with Eric's parents and will leave casually tomorrow to drive home after the morning rush hour traffic. It feels good knowing that I don't have any doctors or lab appointments until June 1st when we come back to Stanford to start the final portion of my stem cell transplant. The actual transplant to happen on June 6th. I'm scared, excited and nervous, all at the same time. But, I know everything will be fine. This is going to put me into Complete Response for a long time. Or at least I hope for a long time.

Well, until my next post, thank you for reading and following my journey. This is the easiest way to let everybody know what is going on.

Building My Stem Cells

Since we have been home from Stanford on May 7th, Eric has been giving me daily Neupogen shots. Actually, through Kaiser it is a different name. Kaiser calls it Zarxio. Two different syringes pre filled. One has 480MCG/0.8ML and the other has 300MCG/0.5ML. Its the same thing as Neupogen, just a different manufacturer. I get one each of these shots daily into my abdomen. Neupogen is a bone marrow stimulant. It can help the body make white blood cells after receiving cancer medications. It can also improve survival in people exposed to radiation. Basically, it's a fertilizer for my stem cells. I talked about how the Cytoxan chemotherapy I had on May 5th was done to deplete any cancer causing Myeloma in my bone marrow. That is why I am getting these shots. That way I will have fresh stem cells to be taken out for my transplant.

There are several different side effects of the Neupogen shot. Nausea and vomiting, diarrhea, hair loss, mouth sores or ulcers, infection, bleeding, infertility or sterility, anemia, fatigue, cataracts, and organ complications such as heart, liver or lung failure. Two that I experienced almost right away were fatigue and diarrhea. Yep, I will admit it. I had diarrhea. Nothing seemed to really help it either. But I had it. Another side effect that a lot of people, if not everybody that gets this shot has, is bone pain. I am experiencing this right now. I thought it started this morning, but thinking back, it actually started last night when I was trying to go to sleep. I thought it was restless leg, but now I realize it was this bone pain. It's in the long bones, hips & sternum. What it feels like? It's a horribly painful throbbing pain throughout. It comes and goes but is always there. What's causing this throbbing bone pain? It's engrafting.

Don't mind the flabbiness, but this is something that can happen from the Neupogen shots

What is engrafting you may ask? It is when the new blood-forming cells start to grow and make healthy blood stem cells that show up in your blood. You will get pain from it because the new blood is forming fast and basically filling in your bone marrow. So, it will make your bones ache and hurt. Mainly the large bones like your legs, arms, sternum and especially in women, pelvic bone. It's a throbbing ache. Think, migraine headache, but in your bones. Anybody that has ever had a migraine (I used to get them all the time) will understand that feeling. It's the best way to describe this pain. According to a doctor, once my White Blood Count gets to 2.0, the pain should subside. Not go away, but be better tolerable. That will hopefully be tomorrow, but we really don't know. The engrafting will definitely happen after my transplant also. On the Be The Match webpage, they talk about the engrafting for after the transplant. If you want to see what they say, you can go to here...
https://bethematch.org/for-patients-and-families/getting-a-transplant/engraftment--days-0-30/

Labs from the last 4 days

On Wednesday this past week, May 11th, I started going in for daily labs in the morning. The reason for these labs is to see where I am with my white blood count. Dr. W told Eric and me that what we are looking for is for my white blood count to get to 3. He only told us the number. He didn't describe what it means. All we know is, we are waiting for the number to be at 3 before Stanford will call us to come in the next day to take my stem cells out. A process called Aphesis. Which I will talk about when it happens. On Wednesday, we got the results back and my white blood count was at 0.4. Almost zero. Thursday they went down more to 0.2 and Friday to 0.3. This morning we went in and I was feeling a lot better than I had been, minus the bone pain. I had my labs done and by about 12:30pm or so the results were in. My white blood count is now at 1.1. That's up almost a whole point. It makes me excited to see what it will be at tomorrow.

So, for now it's all just a waiting game. Waiting to for the next morning lab appointment. Waiting for the next results. Waiting for the call from Stanford. Waiting is tough, but I will do it. As I have said before, I will do it because it means I will be better soon.

Passed Out

Today was scary. Really scary. Not just for me, but especially for Eric. He was about to get ready for work and we decided to do my daily Neupogen shot (fertilizer for my stem cells) and Heparin flush of my catheter line. I stood in front of him, pants down a little and shirt pulled up some to expose my belly. We do the Neupogen shot in my belly. Basically, where there is the most fatty tissue. We could do it in the back of my arm, my thigh/butt cheek or tummy area. We chose the tummy. It's easiest. There are two profiled needles with the amount I need divided. One has 480 mcg and the other has 300 mcg. It doesn't matter the order we do them in. As long as the "fertilizer" gets in my system to help my stem cells grow and develop faster. Eric took an alcohol pad and cleaned an area on one side of my navel for one shot then gave me the shot. Then, took the other alcohol pad and cleaned another area on the other side of my navel and gave me the other shot. During that, I don't watch. I never watch a needle going into me. I can watch afterwards when they are taking blood for labs or I have an IV, but never watch a shot.

The next thing we do is the Heparin flush of my catheter line. The Heparin is an anticoagulant (blood thinner) that prevents the formation of blood clots. This line is going into the superior vena cava. It makes it easier for blood draws, administering me chemotherapy, taking out my stem cells, and giving me my stem cells back in. Eric was getting everything ready and as usual, I was helping him. Making sure he cleaned the valve and then opened the line. He had one tube of Heparin attached ready to go when I passed out.

You see, I was kneeling down next to him when he was going to do this procedure. I had one hand on the coffee table and the other was free to assist him as needed. As I was kneeling there, I started to feel a little nauseous. So, I just started to breath. Then, a wave of what felt like I was sweating profusely came over me, but I wasn't sweating. Next, everything slowly got muffled. All sound. The tv. Eric talking. Brandon babbling in his bassinet. Azul's claws clacking on the laminate flooring. Everything was muffled. Next thing I remember is me, laying on the floor. Erics arm behind my head. Eric kneeling down looking over me asking if I was ok. Asking if I could hear him. Asking me if I knew what happened. It took me a minute to realize what had happened, and then I started to get tears in my eyes and was scared. I knew I wasn't out very long. But scared that it even happened. As I lay there, trying to figure out what happened to make me pass out, Eric told me he was calling in and I slowly started to sit up to get up and sit in a chair and get some water.

The daily process

Eric then, holding Brandon because at this time Brandon was crying and fussing wanting attention, started to call neighbors to come over and help him with Brandon. First, our neighbor Kathy who helps us with the dogs. But she wasn't at home. Next, Cindy next door, but she didn't answer and he left a message. Then, Rebecca, a few doors down. Again, another message left. As I sat there, I heard the door next door close and then a knock on our door. It was Cindy. Then, a few minutes later, another knock on the door and it was Rebecca's husband Brad with their son Wesley. As I sat there, I was really embarrassed. I hate being in a vulnerable position. It's actually made me very insecure the rest of the day. While sitting there, Kellie from oncology called for Eric. She was calling because she had a doctors note for him for work and wanted to let him know. He told her what happened and they talked about it and she told him to bring me in so she could see me. By the way, this whole time I am told I was pale. But there was color in my lips.

Once everything was situated, Eric finished the Heparin flush and while Cindy stayed to help watch Brandon, who had fallen asleep on her at this point, and to watch me while he showered and got ready to go. The thing Eric realized too, after the fact, was that he should have called 9-1-1. He, like I probably would have, spaced on that. All he could think about was making sure I was ok and woke up and getting help. We got to Kaiser a little later and Kellie also said the same thing. So had my friend Vanessa on Eric's status update on Facebook. We both realize we needed to do that. Next time, and hopefully there isn't a next time, we will.

After Kaiser we ran a few errands and then got home. I have felt off the rest of the day. Tired. I was feeling weak last night. But figured it was just from the Neupogen shots. I even told our medical social worker that this morning when she checked in on us and she said that was normal. Now, we are all in bed. Brandon passed out and myself writing while Eric cuts his hair. I am about to go to sleep I am exhausted.

So, it was a scary day, but we learned something from it. I am still here. And ready for all of this process to be done and my transplant over. But, just a few more weeks. For now, I am off to bed. Good night!

Home For the Week

I'll tell you, it was really good to get home on Friday night. All three of us needed it. For one, just to get to what we know and two, we needed to get out of the car and off the road. That was a long drive home. It was Friday and it was a bit rainy. Plus, Bay Area traffic is horrible. I hate to say it, but it is. I would rather drive in Los Angeles traffic. But, we made it home. The next time we hope we can leave at a different time of day (earlier) and NOT on a Friday.

Since being home, I have really seen the limitations I have. The biggest thing has been helping out around the house. Especially with taking care of Brandon or the dogs. I can feed Brandon, but somebody has had to hand him to me. The reason for this is because I need my Hickman line to heal. It's still really tender and sensitive. The other thing is, I can't change his diapers. Thats a big thing. Plus, I can't sleep in the same bed as Brandon. That makes me sad because I have gotten so used to it. So, I have been sleeping in another room and I'm not getting that great of sleep. I don't have Eric or Brandon. It makes me sad.

Another thing I can't really do is go outside. Well, I can, but I have to wear that awesome special hepa mask I have anytime I go outside. People need sunlight. And, with yesterday and Saturday being rainy days, there wasn't much of it. It's crazy how fast the feel of depression can come on too when you can't get outside like normal. And, being inside, not doing much, makes me lazy and sleepy.

Yesterday, Eric and I did go to Kaiser to pick up a prescription of mine. I had to go in to Urgent Care to get the paper version because it's a controlled substance. It's my pain medicine for my back. While I was checking in, an elderly man came out pushing his, what I assume to be, his wife in a wheelchair. He stops, looks at me and says "Wow, it must be an early Halloween or something." He probably meant for it to be funny, but personally, when you see somebody at a hospital wearing something different, you really shouldn't say anything. It's rude. When I heard him say it I just turned and gave him a look and turned back. Had I said anything to him, I'm sure he wouldn't be able to hear me. I mean, my self esteem is already down having to wear it when outside, and to have somebody say something hurts that much more. I could be a little more sensitive right now, but that's beside the point.

The other thing I have found that's happening the last few days is I feel really weak. Physically weak. I get out of breath faster going up the stairs. My body doesn't want to hold on to things very long. And I feel like I can't get out of bed as fast as usual. I've been told it is normal. But I don't like this normal. It makes me feel helpless.

I appreciate everything that Eric and some friends have done for me also. Eric and I never thought that all of this would be this emotionally and physically overwhelming. Especially for him. He likes to have his alone time every now and then. Everybody does really. But, he has to be a caregiver for 2 people and 2 dogs right now. On top of working. It's wearing him out. I'm trying not to have him do too much for me. It's getting better though too. At least after today, I can help with at least picking Brandon up. I still won't be able to change his diapers until after they take my stem cells out next week. That's when all precautions stop until I have my transplant in June.

After all of this is done, I want to do something special for Eric. He really deserves it. He is an amazing father and husband. He really takes care of us. He deserves a little of time to himself. Sleeping in, relaxing, whatever he wants. I know he mentioned that he wanted to do more for me yesterday for Mother's Day. I told him that all of this is in the middle of my cancer treatment and when it's all over, we should do a day of Mother's & Father's Day together. A mini one day vacation. Because honestly, none of this has been a vacation. Far from it. And I don't remember the last time we had a real vacation. Probably our pre wedding familymoon to Disneyland. We need a vacation.

Well, it's after 11am. I should get moving again and get Eric up. I am sure he was up a lot of the night with Brandon. We tried to get him on a schedule last night, but other things on in the way. Thank you for reading and letting me vent at times.

Mother's Day

Today is Mother's Day. A day I have longed for for so long. I have been a fur mom for quite a while. Actually, since 2004 to my cat Elvis. He, unfortunately got really sick and went on to kitty heaven. He was a great cat! I was never a cat person until him. See, my ex Jay & I had some friends who adopted a stray cat. They soon found out she was pregnant. She had 4 kittens. Two boys and 2 girls. They were, oddly enough as I am remembering, born on Mother's Day. May 9, 2004. I got to meet these little funny looking creatures when they were just hours old. After a day, I decided I wanted Elvis. The reason I named him Elvis was because he was black and white with a white sneer look on his face. Like Elvis had. Well, the sneer like Elvis. The thing about my Elvis is, he acted like a dog. I think that's what made me so attached to him. He would sit for treats and lay down for me. He was a great cat! He even tolerated it when I got Kahlua in 2007.

Mr. Elvis

March 20, 2007 I became a fur mommy again. This time to my puppy Kahlua. She was a great addition. Although, I did let her walk all over me. Training her was hard. She was stubborn from day one. She was the epitome of going and looking for a dog who was one way, getting them home, and their true colors come out. She was the most calm puppy out of the litter that was left. She was calm the whole drive home. The first day or two she was calm and then she became this crazy hyper puppy. Obviously she felt at home. She tormented her "big brother" Elvis. Which, he just tolerated it. She taught herself how to throw balls with her mouth and run after them. Which made it annoying for my downstairs neighbor. Eventually we moved into the home we are in now. The condo. She took to the stairs fast. And, of course, my bed. She was sad when Elvis didn't come home from the vet. She moped around the house for a few days. she really didn't eat and only cuddled. She didn't know what happened. All she knew was, her big brother wasn't home.

Silly Kahlua

Elvis & Kahlua

Fast forward to July 2014 and Kahlua was now the "big sister". Eric & I welcomed our big boy Azul, or Blue, to the family. A Great Dane/Pit Bull mix. He was just as big as Kahlua is now as a puppy. Kahlua looked concerned at first. She wasn't so sure about him. But, like Elvis did for her, warmed up to him and tolerates him. It's a play mate. Azul went through puppy classes and passed with flying colors. His graduation picture was the cutest. He looks like he's smiling it in. It was one of the best pictures I've seen of a dog. Azul has a huge personality, but a short attention span. We can tell him something and he will listen, but a minute later (no, really, a minute later) he will have totally forgotten what we said and will go right back to doing what we said not to. The thing about Azul though is, he is very loving when he wants to be. Which really is all the time. But, the all the time is in a selfish way also. Thing is, I still love him.

Puppy Azul

Before I became another humans mommy on October 6, 2015, I was almost another humans mommy twice. The first time we found out was the middle of May 2014. We had been trying since February & it seemed like finally it was going to be. Then, on June 4, I started to have some spotting while getting ready for an overtime shift. Before I left for work, I was cramping a little. Then, on the way to work, my lower back was starting to bother me. It got to the point where I could ignore it and make a left and go to work or make the right and head to the ER. It was getting so bad, that I made the right. Sure enough, I had a miscarriage. I was devastated. I felt so lucky though to have my friend Summer who just happened to text me as I was getting there come and sit with me until Eric got there. She was truly a lifesaver. The second time I was going to be a humans mommy we found out on September 11, 2014. This one lasted a lot longer. Our first appointment we heard the heartbeat...and saw two sacs. Although, we could only see one fetus at the time. The next appointment there was only one sac and still a very strong heartbeat. We got to 10 weeks along and figured we were good to go ,so we announced our little bundle. At our 12 week appointment, there was unfortunately no heartbeat. We were very devastated with this one as well. Those 12 weeks, I felt like it was a girl. So, when I ended up having to give birth, so to say, in the ER 4 days later because I was going into labor, we named her Aspen Emilijia. Aspen after my favorite tree and Emilijia is the Lithuanian spelling of Emilia. We knew we wanted our heritage in the name somewhere. To this day I still feel like I feel her around me. Especially now. And especially since we now have 2 Aspen trees on our front porch. One took off fast, the other took a while, but we came home from Stanford the other day to some leaves on it now. That made me extremely happy.

 The 1st Aspen tree

The 2nd Aspen tree

I decided, after that miscarriage, that we'd only try one more time. I couldn't do another miscarriage but still wanted to see if we could have one baby. February 24, 2015, I peed on a few (ok, A LOT) of sticks and found out we were pregnant again. This time, we didn't tell anybody. Well, except for a few close friends and my dad. We didn't say anything officially until May 10, 2015. We were well into the 2nd trimester. Everything was going well. I had morning sickness, but nothing I couldn't handle. I still worked out and kept moving. I was feeling great! Then, the cancer diagnosis came. With it, I had fears that I would end up leaving my son without a mother. I cried myself to sleep and cried myself awake for a few weeks thinking of that. Here, I was finally going to be a mommy to a human baby, and I have a cancer that is not curable right now. And, since I was pregnant, there were tests I couldn't do yet. So, we had no idea of what stage I was or anything.

October 6, 2015

October 6, 2015 would have to be the 2nd best day of my life. The day I became mommy to our amazing little boy. The little boy who really saved his mommy. Brandon has been the biggest joy in our lives. His furry brother and sister love him and he really is an easy baby...with the except of sleeping at night. He is now at the point where he will kick or push up against us. To the point we are clinging to the side of the bed to stay on. I know we should put him in his crib or bring the bassinet up stairs, but there is something comforting having him in bed with us. But, like I said, we really should stop this sleeping in our bed thing. We need our sleep too! In order to take care of him.

Family

So, on this day. My first Mother's Day to my own human baby. I thank him. I thank my little man for choosing me. For choosing to be our Rainbow baby. For making me the happiest mommy I could be. For putting a smile on my face everyday. No matter how many times he cries, or how upset he can be. No matter how tired he has made me or will make me. No matter how much he scares me with his crawling, standing and trying to walk around now and how he may scare me or make me worry in the future. I will always be so grateful, honored and happy that he chose me. He chose to stick. He chose to save his mommy. For that, I will be forever grateful.

7 Months Old

Happy Mother's Day!

Full Day At the Treatment Center

Morning snuggles

The alarm was set for 5:30am this morning. Both Eric and I were up at 5am automatically because we had to use the restroom. For me, it was because of the saline fluids being pumped through me constantly since about 4pm yesterday. Then, we couldn't fall back to sleep. Mainly because we knew that the alarm was going to be going off within about 20 or 30 minutes, so we slowly got up to start getting ready. I didn't want to get up. Not that I didn't want to get ready to go or anything, I just know I need more sleep. At least when we do sleep while here, the beds are REALLY comfortable. I sleep so good when I am sleeping here. I do believe that we will be needing to get a new mattress very soon.

Me, waiting to meet my nurse and get started

We finally got up and Eric got the coffee going while I got myself prepared to get in the shower. By prepared, I mean taking a baggie and putting my Hickman line in it, sealing it shut, folding it up, and taping it to me. It's a process for the next 2 months. But honestly, I'll do it if it means I will be getting better. I was finally ready to get in the shower. That was tough because I was still hooked up to my BIG bag of hydration. So I could only reach so far with that attached to me. To give you an idea of just how big the bag is, a normal bag is 1 liter. Like I am hooked up to now sitting in the hospital bed for my treatment. This bag that I wheel everywhere with me is just over 4 liters. That's why I emphasized big. Ok, back on track now. Squirrel! One of the things I'm not supposed to do right now since getting my Hickman line yesterday is have my head lower than my heart. The reason being, if that happens, I can get dizzy and possibly faint. So, Eric had to help me dry off. I finally got dressed, did my hair and make-up and was ready to go. At this point, we still had about 45 minutes before we had to leave. I had my coffee, had an English muffin and took my pills. 

Here we are, before anything got hooked up

While Eric was showering I got to hold my sleeping baby boy. Something we saw this morning (well, we knew it before, but kind of cool to see when you are limited on things) was that Brandon was squirmy with Eric. He was kind of asleep, kind of awake and really fidgety. This was before I got in the shower. So, Eric took Brandon and laid him down next to me and he instantly stopped squirming and being fidgety. I'll be honest. It's the boobs. He loves the boobs. It's one of his comforts. I gave him about 20 minutes of mommy cuddles before I really had to get in the shower. After this morning, part of my precautions is that I will not be able to sleep with him in the same bed. So sad, but I need my health to be able to be here for him in the long run. 

Loving these yellow hospital socks

Once Eric and I were both ready, we got Brandon (he was still sleeping) with grandma and grandpa and we were about to walk out the door when Eric dropped on accident his breakfast. I felt so bad. He told me to go ahead and go and he will meet me here or catch up with me. I ended up getting faster than he could catch up to me. I'm a fast walker. I learned that from my step-mom when we wherein a mission in the mall. Back then, I remember thinking "you're walking too fast". Now, I realize, it was just her way of getting herself and 4 kids through the crowds and to where she wanted to go. Very efficient if you ask me. So, he caught up to me when I was checking in for my treatment. 

WHAT? That's 7 bags of different things

We were called back and the nurse assistant Kenny did my weight, then took us to our room where he continued the vital signs. blood pressure and temperature. One thing I do have to say, here at Stanford, they do everything in kilograms and celsius. I've never seen that in a hospital. It's kinda cool, but for me I have to really think about it. Of course, I usually look it up later. Then we met my nurse for the day. Shawnee is awesome. Really, all of our nurses have been amazing. She went over what we would be doing today and gave me the menu for my meals. They were going to get my breakfast so I was ready to look for what I wanted. She got me unhooked from my hydration on wheels and hooked up to the saline bags here, along with Zofran to help me not get sick, lasicks (so I can pee), and then my Cytoxan chemo. The chemo part was only 2 hours. The rest is just hydration. The reason for hydration I mentioned in my previous post, but basically Cytoxan, if you are not hydrated can cause an infection in your bladder and cause the bladder lining to bleed. They found if they hydrate you well before, during and after, it won't cause that. So, that is the need for the hydration on wheels until tomorrow and the long day here today. 

Starting to blog & I NEED my Posh hand creme

Basically, all I have done here is write some, talk to people checking in on me through text or Facebook, talk to Eric, and pee. We did get up and walk the hall a little after lunch. I needed to stretch my legs. It's weird doing that and having a tower with saline bags attached to it tagging along. Kind of cramps the "date". But, Eric didn't mind. I miss Brandon. I think today is the longest I have been away from him yet. But, I know he is doing well and in good hands with Erics parents. 

The menu for breakfast, lunch and dinner

Now we are back at the apartment. Since the last paragraph we ordered dinner (both of us had a spring salad with chicken and ranch), Shawnee watched and helped Eric change my dressing and clean around the area of my Hickman line, I was hooked up to a new BIG bag of hydration to take with me, we had our dinners, and I got my hepa mask I will need to wear when outside of the home or car. Going anywhere, I have to wear it until after my stem cells are taken out of me. Then I am free to roam about the country (ok, Stanford area and home) without it until we return back and I get my next chemo on June 2nd.

Down to just 2 bags of saline from the 7 different ones I started with

I thought the mask was going to be uncomfortable, but it's not. Its actually pretty comfortable. I'm already used to it and only wore it for the 4 minute walk back to the apartment from the Cancer Center. We are now relaxing here at the apartment. Thinking of maybe going to the arboretum area here. It's an outdoor area thats full of trees. We've driven through it on the way here, but haven't stopped and walked around. So if it doesn't rain, which it looks like it's going to, we will head over there after everybody has eaten and Brandon wakes up. It shows just how much exercise he's getting with grandma and grandpa. He's taken more naps than he does at home and sleeps longer too. Then again, I also believe he's growing, he's definitely teething and he's using his brain a lot more. That can tire anybody out. 

The way Eric was able to take a nap

I know I keep saying it, but THANK YOU everybody who reads my posts, has helped us and checked in on us. They are much appreciated. We are trying to respond to everybody but sometimes it gets away from us. The main portion of this process is in motion and started.