Movin' and groovin'

That's what the baby is doing right now: movin' and groovin'. I am attempting to do the opposite. I'm tired!

I think I've meant to update this blog for a few months, but alas, you've all had to wait 3 months for news. Maybe that should point to how busy this household has been.

Work: 
Dan is still teaching away and helping middle schoolers figure out formulas and basic theology. His students love him, and he really likes his job.
I actually have a new job, which came along in timing only God could orchestrate. My doctor wasn't thrilled with me still working on the floor after a couple of incidents, but I couldn't imagine being on disability from January to May. Just before Christmas, my manager and the Clinical Nurse Educator on our unit recommended me for a position as an Oncology RN in the office of a couple of oncologists in our area. The practice is still connected to the hospital organization, so I didn't have to restart benefits or buy new uniforms. It is the type of job that I have been aiming for since nursing school, so it was huge opportunity and blessing. I interviewed in early January and started the second week of January...they moved fast. The position is Monday-Friday and (theoretically) 8-5pm...I am rarely home before 6:30pm.  I also don't have to work holidays or weekends! My new manager has been especially flexible with OB appts and such.
I am training with the other RN in the practice who helped get the practice running and keeps the practice running. She seriously handles such an enormous amount of work that I am bewildered to imagine myself doing it. There have been hiccups in training and I am being stretched a LOT. Going from being an experienced and trusted RN on the oncology unit to being very new and green and having to build trust all over again. I feel like this is where God wants me to be, but I am exhausted.  I am still learning, which is requiring eating a lot of humble pie. Outpatient is a different world from inpatient. It is crazy. As hard as it is, I do love my patients. They make the hours and tears worth it.
(Pray that I can learn well and fast and gain the trust of the other RN, the doctors and my patients. Also pray for endurance for me...I'm not too great at feeling new and lost again!)

Cancer:
Dan's last CT showed no evidence of new disease...but it did remind us that Dan's spleen is getting a little out of control. Because of some of Dan's treatments, his liver is congested and the blood flow is getting backed up to the spleen. His spleen, in turn, is munching up his blood cells. Dan's immune system is being sustained with twice-weekly injections and his platelets (the blood clotting army) are running on fumes. In the words of Dan's favorite doctor at Stanford: his "spleen is now bigger than his liver and is asking for a smack-down."
Said smack-down will be coming in the form a partial embolization of his spleen this summer. The goal is to shut part of the spleen's overeating and let Dan's blood counts bounce back up. There are risks: infection, lots of pain, the need for removal of the whole spleen, hemorrhage, etc. At this point, though, this is our best option.
Dan will be in the hospital at least overnight, on pain killers for a little while, and out of heavy lifting commission for a bit. Oh, did we mention this will be about a month after our family grows by one little person? Yes, we are crazy.
(Please pray for safety for Dan, wisdom for Dr. Sze and smooth sailing...oh, and that the procedure is successful!)

Baby:
We are now 30 weeks 6 days along, and the baby man is growing great. His anatomy scan in January looked good with no anomalies noted. I am measuring right on track, though everyone insists that I look small still. Trust me, I don't feel small. And yes, I know I will get bigger.
Since we've been praying for this pregnancy for a long time, I try not to complain...but this isn't always fun! Ha. I'm positive, though, that the heartburn and backaches and fainting will be well worth it in the long run.
Baby man has a name, but we are keeping it a surprise until his birth-day. Don't worry, it's a strong, traditional name.
We have had one baby shower so far, hosted by Auntie Lisa, Auntie Jessica and Grandma Jamie. We were blessed with essentials and goodies. Dan says that the baby will at least be warm, fed and well-clothed.
In 3 weeks, we'll head up to the northern regions for two more showers...we are well loved!
(Pray with us for safety in delivery, a healthy baby boy and a healthy mama.)

Miscellaneous:
We got a new car! Our Hondas were beginning to act up intermittently, and though safe enough for us to drive in, I wasn't thrilled about driving the baby around in them. So, we bought a 2010 Toyota Highlander a couple of weeks ago. It was the biggest check we've ever written, but it's a great car.

For  the next nine weeks, we'll just keep chugging along. Working, going to birthing classes, trying to keep up with friends and family, and getting our home and hearts ready for baby man. I'll try really hard to update more often...at least post one more blog before one with baby pictures!

Thanks for the support and love and prayers. Keep it up :)

Major Prayer Request

For my entire life, I have been a worry wort. Everyone who knows me well, knows this. What everyone does not know is that I am a bit more than a worrisome person. I have OCD and an anxiety disorder. Now, I don't mean I just get a bit nervous or like things  a certain way. I mean, my brain does not work normally. 

My counselor describes it this way: we all have a warning light in our brains that tell that something isn't right or is dangerous. My warning light doesn't stop going off. Accordingly, I live in a near constant state of high-alert and some level of fear. Sometimes, the fear escalates and turns into a full panic attack that leaves me unable to function or think beyond that which has me scared. 

These attacks were getting so prevalent last year that my counselor felt I had plateaued with therapy and needed medication. I was extremely resistant, so I kept trying. I then reached a point where my worst fear would become reality in my mind. 

(Example: I would give an injection very carefully and know that I had not poked myself. However, the thing I feared most was getting stuck and getting HIV. Therefore, I would become sure that that was exactly what had happened. Like, really sure.)

I was miserable, and though he denies it, I'm sure Dan was miserable, too. When I came home from work "knowing" that I had hit a pedestrian on my way home (though I really hadn't), I gave into my counselor's advice.

I was on meds for about 6 months and both of us noticed a huge difference. Sure, I still worried about things, but I could worry about reality instead of my brain's misconstrued fictions. I felt good.

Last May, I successfully weaned off the meds as they could interfere with conception. I still felt relatively under control, like my brain had been reset for the better.

Unfortunately, this improvement has vanished since becoming pregnant. The doctor says that the hormones negatively effect my OCD. I say my OCD has gotten out of control. Mainly, I worry about the baby. Everything I do, I worry about hurting the baby: slamming on the brakes, eating most foods (listeria hysteria), going to work, etc. I also worry about my old fears of needle sticks and contamination...a lot. I simply cannot convince myself that I am healthy and able to have this baby. My panic attacks are getting more frequent and I feel like I am losing my mind. My mind is once again replacing reality with my worst fears. 

I am grateful that I am pregnant, but I cannot be joyful or excited. I am always afraid that if I get too happy, something bad will happen. If I buy maternity clothes, I'll lose the baby. If I start to plan, I'll get listeria. Seriously, this is how my brain has been working. So, please forgive me if I haven't been readily jubilant or forthcoming with information about my pregnancy. My OCD brain won't allow it.

After discussing this with my OB for the last couple months, we have decided that the risk to the baby is greater with my panicking and lack of functioning than with the medication. Dan and I have done our research about the medication and I have been given approval by my OB and GP to start them up again. 

(Actually, I spoke to my GP on the phone today and tearfully explained my current situation. She was incredibly encouraging, telling me that I am not crazy and that my mental health is just as important to the baby as my physical health. She has already done extensive research on pregnancy-safe meds and was ready with answers for me. She told me to remember that babies are much stronger than we give them credit for, but that no one should be looking down on me for my fears. She's also allowing me to go in for regular blood work to help me know that I haven't gotten anything at work.)

All that to say, I am hoping for a couple months of sanity in which I can actually enjoy this pregnancy. 

I'll start the meds tomorrow morning at a nice low dose, and we're praying they work like last time. 

Obviously, this is not something I have been eager to share with the world. I am weary of labels and the stigma of mental health problems. Yet, this is part of me and is a real problem that people deal with all over the world. The first step toward helping people with mental disorders is people shedding light on them. This disease is not made up in my mind or me being weak in my faith. There is a chemical imbalance that stops me from thinking properly. 

I try to spend a lot of time in the Word and have Scriptures on my walls. I pray constantly and I know that God is stronger than anything I fear. But, just like Dan got chemo as we trusted God for healing, I am taking meds as I trust God for healing.

Please, please pray for us. It is not just me dealing with this. Dan puts me back together daily; he is the only one who can talk me down. He uses logic to try to invade my brain for the better. I long to be happy and joyous and excited. I want to be able to love Dan without fear. I need to be able to work without constant fear. I need lots of prayer.

Joy and Fear

I have been putting off writing this post since October. I'll explain why later.
However, I know it is long overdue. We have serious stuff going on in the Howen apartment.

First off...Dan's health:

Dan had a CT back in October that showed no evidence of new disease, as far as cancer is concerned. However, it did show that Dan's body is certainly unhappy with all of the abuse it has taken over the past 5 years. His liver has had several treatments, and thus has a ton of scar tissue. Because of these things, the blood flow in his liver is a bit sluggish (called portal hypertension). As the blood gets backed up, it is getting stuck in his spleen. The CT showed that his spleen is "markedly enlarged" and overactive. Typically, this could just be monitored, but Dan's immune system is taking a beating. You see, the spleen holds on to blood cells normally. When it gets overactive, the spleen munches on way too may blood cells. In Dan's case, it's harboring and chewing up platelets and white blood cells. This makes his immune system and blood clotting weak.

For now, the doctor is monitoring labs every week with Dan getting a shot of Neupogen twice a week to boost his white count. God has certainly protected Dan, as he is high risk for getting sick--especially working with all those munchkins! Though we pray expectantly that God will continue this providence, we are also looking at the next options.
1. Remove the spleen completely. Dan is against this idea because it is major surgery and he is already missing several organs.
2. Radiation to the spleen. This carries risks and isn't actually proven that effective.
3. Embolization to part of the spleen. This would leave Dan with some spleen function, but would help it chill out hopefully.

Dan and the docs are looking at option 3 as the goal, though we have no clue when. It would be done by Dan's interventional radiologist at Stanford, which makes me feel more confident--this doc knows Dan better than most people! The procedure will involve a couple days in the hospital plus a good deal of pain. There is also a chance that the embolized part of the spleen will become infected mush...which would lead us back to a mandatory option 1.

So, when will this happen? Not sure. If Dan's counts can hold up, we have time to wait. If they don't, well, our hands will be tied. Before or after May? We just don't know. For now, it's trusting God for more guidance and time.


Baby News:

We're having a baby!
I'm sure everyone knows this already through Facebook and excited grandparents-to-be.
We had been going through fertility treatments, which weren't working. We were exhausted and missed  just being normal with each other, rather than having our "special moments" dictated by medical professionals. So, we decided to take a short break, though I would continue to take Metformin to keep my body (hormones, cycles, etc.) manageable.

Well, that break resulted in a rather large surprise on September 21st. I was starting to work in the Infusion Center at the hospital giving chemo. The other chemo nurse saw me get a bit woozy one day and made me swear to take a pregnancy test before continuing to give chemo. I had the next day off, so when I woke up at 5am on accident, I figured I would get the disappointment over with. Still drowsy, I leaned against the wall in the hallway for the obligatory 2 minutes before reading the test. Well, I thought I had double vision when I saw 2 lines. After a second test with 2 lines, I woke up Dan. He swears he knew what was going on even before he saw the tests. Obviously, we didn't go back to sleep!

A blood test and an ultrasound the next week confirmed by Dollar Store tests.

I've always been a worrying person and we had worked so hard for this little baby, that I was afraid that if we told everyone too soon, something bad would happen. We didn't even tell our parents for a few weeks. Despite my irrational feeling that spilling the news would mean losing our baby, Dan convinced me to tell everyone on Thanksgiving. It's still overwhelming reading all of the love and encouragement we received that day!

The pregnancy hasn't been totally smooth and that joyful glow certainly hasn't fallen upon me. I started having bad abdominal pain around 8 weeks. Because of my history of PCOS, the fertility doc labeled me as high risk for miscarriage and placed me on light duty until after my 1st trimester. They have never found anything wrong with the baby or me, though they just released me to my regular OB a month ago. She believes it is just a combination of me being small and the baby stretching things out, though she is keeping a close eye on me. I've been back at regular work for a couple weeks with only a couple mishaps--all of which have left me sore but with a healthy, fidgeting munchkin.

We have our "big" 20 week ultrasound after the New Year's, in which we will learn if this is a boy munchkin or a girl munchkin. We're trusting God that our little one is forming well and will stay cozy until May :)

Pray that the baby is healthy and that Dan and I get to meet this little one in the Spring.

Pray that God prepares our hearts to be good parents and that we can raise this baby to know Him.

Pray that my fears will be replaced by peace.

Pray that Dan stays healthy and that is spleen will calm down without intervention.

Pray for guidance for us.

For those who made it to the end of this blog, please read the next post. I'm not sharing it on FB, but it is an issue that I need prayer for desperately. Thanks.

Back to School

As the summer is coming to a close, I thought we could give a quick update.

Dan's recovery is going great. The doctor took off his 'hip precautions' with the admonishment to just be careful...and no yoga. Dan finished off physical therapy and is now able to walk around without any help whatsoever. (Toulouse is the only one who uses Dan's walker now, as seen above).
We went to Sacramento for our anniversary, and he walked 2-3 miles without a cane and no problems! Just recently, we got gym memberships, and for the first time in 3 years, Dan and I can work out together. Yay! Hopefully, by next year, we can start running together for the first time in almost 5 years. Cannot wait :)

Dan is starting back at Christ Lutheran full-time today. He will be teaching math and Bible to middle schoolers again and also, helping to teach English to some Chinese ESL students. If everything goes well, he will finish off BTSA (the new-teacher credential validation process) this year. That would mean that he will be a "true" teacher and able to transfer his credential elsewhere.

Work is going well for me. I had a yearly evaluation with my boss last week that went better than I expected, though I always get nervous for those! Our unit will be even busier this fall and winter as we prepare to move into a new building in December. Lots of classes and training will be added to our already full weeks. I am thrilled to be moving out of the old part of the hospital, as it is prone to ghosts and creepiness and less earthquake safety than the other parts of the hospital. (It has made for good stories, though! And, to be fair, it would take a 6.0 earthquake to bring our unit down. We're still pretty safe, just shaky!) I am less thrilled to be picking up extra shifts, but we all have to do it. It'll be a couple of months of our staff being tired but we'll get through it together...and get a new, beautiful unit to work in!

No news on the baby front. I have a feeling that's how it's going to be a for a very long while. After a few months of intense med regimens and interruptions to normal married life, Dan and I felt like we needed to take a bit of a break. I'm still watching my diet and taking the metformin, but no crazy hormones for right now. I'm pretty sure Dan would tell you I am a more pleasant person to live with now!
LORD made it clear to me that I need to be more focused on the marriage and husband I already have than the children I may have eventually. In our prayers, my heart has been burdened with the fact that whether we go through fertility treatments or conceive the old-fashioned way, God is the one who has to create a new life.
Prayers for wisdom would be appreciated as Dan and I try to discern our next steps. Also, prayers to protect my heart as I try (sometimes unsuccessfully) to celebrate with families having babies. A pleasant surprise before we have to go back to the fertility doctor wouldn't be a bad thing, either.

Anywho, that's about it for now. I'll leave you with a picture of our adorably ridiculous cats, as I go to finish off the "honey do" list Dan left for me!

Checkpoint

I begged and pleaded with Dan to write this blog post, but he kept saying no or insisted on waiting until tomorrow to do it. So, naturally, I gave in, and you have to read my words again.

(He did, however, title this one. A checkpoint in a video game is where you reach a certain level in the game and are "safe" from losing all the work you have put it. Dan says that he feels like this is where we are in the "game".)

After working ourselves up to get bad news or ambiguous news again, we ended receiving rather good news from the oncologist. To sum it up, there was no evidence of new disease on the scan. There were some things that the doctor will need to keep monitoring.

The CT scan showed several things:
1. The liver abscess from last year FINALLY resolved.
2. No new lesions or malignant spots.
3. No more enlarged lymph nodes above the lungs.
4. No nodules in the lungs (this was a questionable finding from the last CT)
5. Possible colitis (infection of the colon)--Dan hasn't had any symptoms of this but we have to keep watching out to make sure nothing is going on in there.
6. Diverticulosis--no sesame seeds or popcorn for a while :(
7. Haziness around the old ablation site on the liver and around the pancreas (the radiologist called it "misty mesentery")--probably from the colitis, but not malignant
8. Mildly enlarged lymph nodes around the pancreas (same from last time)
9. Portal hypertension and an enlarged spleen--these things could be causing Dan's low blood counts but are not new findings

(I know we've never listed out findings before, but with medical people reading these updates, it's easier to just answer the questions before they're asked!)

The plan for now is to check in with another CT in 3 months. Dan's blood counts remain on the low side, but a touch better. If the low counts persist, there is a chance of a bone marrow biopsy in the future. The doctor doesn't think he'll need immune-booster (Leukine) shots on a frequent basis, but we'll have to be on the look out for signs of infection. Accordingly, if you are sick and feel like hanging out with Dan...please don't! We would love to see you, but will love it more when you're healthy.

So, now we enter another "wait and see" time. In the future, when the 3 month scans show that there is no growth or bad changes, the oncologist may be confident to allow Dan 6 months between scans. For now, though, we are just hoping for a peaceful and calm 3 months!

Thank you for the prayers. God hears every one of them. Dan continues to say that he feels like God isn't done with him. Personally, I hope the LORD wants to keep using Dan in the land of the living for many many many decades!

Dayenu

It will make my Jewish-mama proud that this blog post has a Hebrew title. For the non-Hebrew people reading, the word "dayenu" is part of the Passover tradition that recalls all that Yahweh has done for His people. As the miracles are recounted, the tradition is to proclaim "dayenu!"--or "it would have been enough for us." For some reason this word has been very prevalent in my prayers today.

Today is a bit of a loaded day. My brother turns 22 years old. I am finishing up preparations for my work evaluation after 2 rather exhausting years of being an RN. We found out this morning at the doctor's office that this is another non-baby month. And, finally, we have an appointment with the oncologist to discuss results of more labs and Dan's most recent CT.
I am stressed and more ready to curl in a ball and watch Harry Potter all day than leave the house to go to another doctor appointment. Even Dan is tired of the day already!

However, in the spirit of "dayenu", I have to try to force myself to look at why our lives right now, as they are, would be blessings enough.

1. My brother was given 6 months to live at 12 years old. Thus, turning 22 is a BIG DEAL. Dayenu.

2. There were barely any jobs available when I graduated from nursing school. I have had a job in which I have gained much experience (good and bad) for 2 whole years. This job has provided us with excellent health insurance. I love the staff I work with--making bad days easier to manage. Dayenu.

3. We are able to afford fertility treatments and testing. The specialist is confident we can have kids. It is taking longer than we would like to get pregnant, but we have the ability to keep trying. Dayenu.

4. Dan has survived over 5 years since his terminal cancer diagnosis. He is able to walk and work and enjoy life. He was able to get married and make plans and be a walking testimony. Dayenu.

5. We are saved by the blood of the Lamb, washed clean of our sins and trusting in Jesus for our assured salvation. Dayenu.

I am struggling to proclaim my "dayenu" truths more than I cry out my fears. My gut-feeling and pessimistic nature are telling me we won't like the news we get this afternoon. My husband and his optimistic nature are telling me that we have no idea which way the news will go--and it could be good!

Regardless of what we think or feel, the reality is that God knows and is holding us firmly through the good and the bad. I think that calls for another "Dayenu!"

My least favorite part of surgeries.

What is my least favorite part? The paranoia that comes along the road to recovery. I use the term paranoia quite accurately--just ask Dan. My OCD kicks into high gear for a while after one of Dan's surgeries or procedures. This is good (looking out for symptoms, catching complications quickly, etc.) and bad (the constant feeling of wondering when the other shoe is going to drop, being an annoying nurse-wife, tears, sleepless nights, etc.) I really don't mean to become this person, but it nearly always happens. Dan says I'm getting better. After 5 years of this non-sense, I'd better be getting better!

All of this to say, my paranoia is proving a bit correct this time.

In the post-op period of his hip replacement we knew we were going to be worried about several things and that we would have to be constantly on guard for certain symptoms. These include:

1. Deep vein thrombosis: watching for swelling in a limb that is already swollen from surgery is a little difficult. Asking Dan if he has pain in his leg is also interesting. Even though his platelets are low, he is still at risk for a blood clot. Since his platelets are too low for a preventive blood thinners, we have to just hope that Dan's mobility and exercises will be enough.

2. Infection: monitoring fevers, watching for infectious changes at the incision site, increased pain, etc. Unfortunately for Dan, his white count (the infection fighting cells) are also lower than normal. This could be simply a reaction from the surgery, but that means that his body does not have a typical army to fight off germs. Even movie theaters and fresh fruits and veggies can be the difference between home and hospital. And no showers until the staples come out--gross.

3. Dislocation: no bending more than 90 degrees, no crossing legs and no turning his foot inward. These are the 'hip precautions' that now rule our home. Elevated seats and toilets, grabbers for picking things up, sleeping with a very large pillow between his legs...makes for an interesting house! (On a good note: the surgeon said he tried to dislocate Dan's new hip after surgery and could not.)

4. Bleeding: Dan has low platelets (the clotting cells). This puts him at higher risk for bleeding. We have to watch out for hematomas or other signs of bleeding. Also, he has some pretty incredible bruises to show for it.

Now that we're all on the same page about what we're worried about, let me be frank about what's going on. Dan went for 3 days without fevers, so we thought we were in the clear. He finished his last run of antibiotics today and he was feeling good. Tonight, he developed a low-grade temp again. Grr. If it hits 100.4 F, he gets another trip to the hospital. So, he's now wandering around the apartment with ice packs and tylenol coursing through his system. It better work!

Also, he had a follow-up with his oncologist (cancer doctor) yesterday because his blood counts were not rebounding as fast as we'd like. He's now on bleeding precautions, neutropenic precautions (strict infection prevention) and waiting for the doctor to get some medicine approved to boost his immune system. He'll have to go in for shots 3 times next week (if insurance says yes). He's a bit irritated about not having fresh fruits or veggies, too.

He says the pain is very tolerable. He's literally walking all over the place. Per the physical therapist's recommendation, he doesn't sit for longer than 30-40 minutes at a time. He even tried walking around the apartment without a walker or cane--he did great! PT is very impressed with his progress. Yay!
He'll see the surgeon for a post-op next week, hopefully have the staples removed and get a general feel for how his recovery is coming along.

Dan is as optimistic as he has ever been. He doesn't complain about much of anything. He's still happy that he got the surgery and feels that things will smooth out fine.

I am the one who worries for the both of us. (Yep, the Bible says not to worry. Working on it.) We have moments that feel so normal and stress-free. Then, he gets a fever or his incision starts to bleed or his leg swells more than it has been. He stays calm, I go into hyper-vigilant nurse mode. Sometimes, I just really miss being a wife to a great guy, instead of a live-in nurse to a cancer patient. Dan, for the record, says he misses just being a hot husband instead of being a home health patient. Just a moment of honesty.

This period is just stressful. We know it will pass, but yikes, it is NOT fun right now.

For those of you in the area, I will be going back to work next week and Dan will still not be able to drive anywhere. He is fairly independent at home, but in the case of an emergent need, it would be good to have someone around. Also, since his immune system is low and he's not supposed to be out and about much, this apartment is going to get lonely fast. So, we are really hoping that people would come on over to visit or bring some meals for him or something. Prayers are amazing and needed, but we need some material and physical help, too. If you're willing, let us know!

Alright, so prayer requests seem pretty obvious at this point:
1. No blood clots.
2. No infections.
3. No dislocations.
4. No bleeding.
5. No more trips to the hospital.
6. The perseverance to be just be husband and wife.
7. No more cancer.