Wednesday, December 19, 2012

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.



Monday, August 27, 2012

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!

Wednesday, July 18, 2012

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!"

Friday, July 6, 2012

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.

Saturday, June 30, 2012

Dan's got a brand new hip!

The day finally came for Dan's hip replacement on Thursday. Dan was super excited, enough to scrub himself with chlorhexidine and stick medicine up his nose for a week in preparation. We came into the hospital at about 0530 since he needed platelets (the clotting part of your blood) before going to the OR. A couple minor ordering snafus later, the orders finally got placed for the transfusion and the surgeon said, "run it fast!" Turns out that wasn't a fantastic plan as it resulted in a minor transfusion reaction. Thankfully, things got done in time and Dan was taken to the OR at 0910 with a fat lip and no worries.

(So, I realized that after 3 days in the hospital, I have only been updating people on Facebook. Oops. I'll recap the last few days by just copying over my status updates. Hey, work smarter not harder!)

6/28/12 1220:
Surgery is done and went well. He bled quite a bit more than the surgeon was expecting, but he has low platelets...so, not entirely unexpected. He will not be getting prophylactic blood thinners, that's for sure! The surgeon tried to test out the hip and said it's firm and hard to dislocate. Good! The doc said that Dan is awake and in recovery. He may even be up and walking around by this afternoon. We'll meet him up in his room in about an hour or so! Keep praying for no complications (blood clots, infection, etc.)!



6/28/12 1421:
Dan's back in his room still trying to get his pain under control. Munching on ice chips and chatting with us. Not quite as happy as normal, but that'll change when he eats!





6/28/12 2200:


Dan got a real dinner. I went home and got a real shower and a real nap. We watched some Cheers ("Norm!"). Dan got some Vicodin. Sleepy time before he runs a marathon tomorrow with PT!





6/29/12 1300:


First Physical Therapy session went well after almost passing out. After laying down for a couple minutes, he got right back up and walked on his new hip a little. PT will be back this afternoon to hopefully walk with him a little further. Dan is very antsy to get moving already!





6/29/12 1730:

Second PT and first OT (occupational therapy) done for the day. Both therapists said he is doing very well and better than they normally see. Dan feels good, only needs Vicodin for pain and is eating a lot. As a side note, his blood counts are a little low, but oncologist said we can hold off on transfusions for today. His immune system is a little battered and bruised from all the chemo, so it's taking a while to catch up. Prayers for no infections, no bleeding and no blood clots would be appreciated. Thanks for keeping Dan in your thoughts and prayers!




6/30/12 1025: (most recent)

Alright, so the fevers are still sticking around. Low but persistent and pesky. Labs have all been drawn, chest x-ray, etc. On-call surgeon said that it could just be post-op inflammation, but if that's the case, the fevers should be subsiding by today.
Dan is cleared by physical therapy to go home whenever the other docs give the go ahead. They say he's doing great! Walking a lot further than expected.
Blood counts still low (WBC 2.2, Hgb 8.6). Oncologist will hopefully order Dan a little blood to boost his energy and defenses...at least that's what I'm hoping. I'm sure his nurse will not be thrilled!
Case manager came in to start prepping for discharge, so when we do get everybody signing off we'll get outta here lickity-split!
Dan's favorite part of the day: wearing shorts and a t-shirt instead of his typical "evening gown".

So, that's it for right now. Dan is attempting to let the Vicodin help him take a nap and take care of his temp. We're frustrated that every time he has surgery (he challenges me on this, but trust me, it's every time), he ends up with a fever and/or infection. His incision looks good per the surgeon, his catheter is out and he's walking a lot...hopefully, those things will chase away infection. However, it will also be very frustrating for Dan (and me) if he is completely cleared to go but his body can't figure out to stop having fevers just because it's angry at being beaten up.

Please pray that we are here the shortest amount of time that is safe for Dan. Also, that the MDs have wisdom regarding when a fever is just a fever and when it indicates something else. Prayers for energy for both of us would be good, too!











Monday, May 14, 2012

Love, Marriage and Babies (and a cat)

This just a quick update on life to let everyone know we're still alive and kicking.

You'll notice that cancer isn't mentioned in the title. This is simply because we have nothing new to share on that front. Dan had a couple weeks in which he wasn't feeling good, but it looks like that may have been related to a new medication that has since been stopped. Now, we just keep watching and waiting until the next CT in June.

In the "love" news, our best friends Lisa and Andrew recently got engaged with a wedding set for November in the Wine Country. Lisa and I have been friends since the 3rd grade, so it feels like my sister is getting married! We've also known Andrew since our freshman year at Biola, and he was in our wedding. My goodness, are we excited!
And, our friends Laura and Brian got engaged, too. They'll be getting hitched this summer. This will certainly be a memorable year!

In the "marriage" news, Dan's sister Jessica just became Jessica McBride. Jes and Josh got married this past weekend up in Lodi at a very unique and beautiful wedding. The entire event screamed "Jes and Josh" and they looked fantastically happy. They are headed off to Iceland for their honeymoon today. Now, Dan and I can start bothering them for a baby...well, we'll give them a few months ;)

Also, my family was invited to the wedding, so I was able to hug my parents and brother for the first time since December. It was also the first Mother's Day that all my mom's kids were in the same place with her for almost 5 years! It was very sweet and way too short. We'll be looking forward to another visit from my family in June for my dad's graduation with his BA from The King's College. So excited!


Finally, in the "babies" news, a lot of craziness has been happening. I'm taking far more meds than I'd like, but hopefully they will help us conceive anytime now. We had been working under the assumption that Dan's chemo treatments were to blame for our current infertility issues...but he is very close to normal! I, however, am the one to blame for things being so tricky :(

It turns out that I failed my glucose tolerance test because I have insulin intolerance. This is different than diabetes in that my body just makes a ton of insulin, but my cells won't use it properly so my blood sugar takes longer to normalize. This elevated insulin and glucose ratio throws off other hormones which has essentially kept me from ovulating for Lord knows how long. No ovulating means no babies. Because of this, the doctor started me on metformin to balance the ratios and bring my levels to normal. Also, I have had to change my diet around a lot. No white carbs, lots of fruits/veggies and protein, no caffeine...it's been "fun". Dan has been AMAZING about helping me stick to this diet because I get really sick if I don't. Many women  begin to ovulate normally just with taking the metformin, but the doctor wanted to throw a couple more punches.

After some more investigation, the insulin resistance is part of a syndrome called PCOS (polycystic ovarian syndrome) which is the most common reason in women my age for infertility. As one can probably guess from the name, I also end up getting pretty large and painful cysts on my ovaries. When the ovaries occur we have to put fertility treatment on hold for a month while a different medicine shrinks them. This has already happened once and is very frustrating.

(Yet, God knows what is happening in every cell of our bodies and knows the exact perfect timing of every need. Even if that means, we wait a long time for a baby or we never have one at all. As painful as that thought is, I trust that God has a perfect reason for His will and actions.)

My most recent cyst is gone (yay!) and I've added 3 new meds to my daily cocktail of drugs. The next few weeks (or months) will involve a lot of doctor appointments and waiting and ultrasounds and waiting and praying and hoping and waiting and praying some more. Dan and I are really praying that we are able to conceive with just medications helping us, so that we don't have to move to more invasive technologies. We would appreciate your prayers in this, too!


Oh, and the last bit of our update: a cat! We made the decision to get Toulouse a new friend to help him be less lonely and crazy. We are still holding out on whether or not this has actually worked, but it has been very entertaining. The new kitty is named Fleur de Lis (Dan's choice to keep with the "cats are French" notion in our home). She is 1.5 years old, very small, very spunky and very loud. She talks all the time. Poor Toulouse.

Prayer Requests:
* Keep the cancer away!
* Safe travels for Jes and Josh
* Good timing, successful meds and God's hand in helping us in the baby-making
* A quick recovery for Dan's hip surgery with NO COMPLICATIONS
* Remaining at peace in God's will :)

Thursday, March 22, 2012

A real update!

We saw the oncologist yesterday to discuss the results of the PET scan. The doctor said that the results were fairly unimpressive and a little difficult to interpret (what a shocker). He said that he and the interventional radiologists at my hospital took a look at the scan and were surprised to not seeing anything "lighting up like a Christmas tree." There was nothing that looked scary or "screamed come get me." Also, they didn't even see the enlarged lymph nodes anymore.

There are still hazy, slightly brighter spots around the newest ablation site, above the liver and slightly above the diaphragm. The options for the spots remain: recurring tumor, infection, or scar tissue/post-ablation tissue.

We told him what the Stanford doc said after reading the CT (wait for 3 months, then check again), and he actually agreed. We'll be sending a copy of the PET to Stanford just to make sure this is the right plan. For now, there won't be any biopsying. Just "watching and waiting."
Dan also got the go ahead for his hip replacement surgery. The official date for that is June 28th. I better put in the paperwork to get work off now!

This has also been a busy week for me from the fertility testing standpoint. All of our labs and scary tests were finished today. Thank goodness. The glucose test was like drinking a whole bunch of concentrated snow cone syrup. I didn't think it was too bad until I got home and had a crazy sugar crash. Whoa. As for the other tests, don't ask. I'm sitting with a heating pad and a constant stream of Advil. "For ze babies!" So far, results are looking alright, though we won't know for sure until we meet with the doctor. That appointment hasn't been made yet.

Alright, I think we're going to try to get off the couch long enough to grab some dinner. Thanks for all the prayers and well wishes!

Praises:
- Dan's PET scan didn't look crazy or all lit up!
- Dan's hip replacement is scheduled
- All of the fertility tests are done (for now)

Prayer Requests:
- A good plan from the fertility doctor
- No more cancer!

Wednesday, March 14, 2012

And it begins.

Cancer/CT/PET scan news:
Nada. The PET scan is still tomorrow, we won't know anything until next week most likely when we meet with the oncologist down here on Wednesday.

Baby news:
We met with the fertility specialist for the first time today. Whoa. Our heads are still spinning a bit from all of the information.
The doctor seemed kind and extremely intelligent with all kinds of awards and plaques covering a wall of his office. Even better, there was a whole wall full of babies he has helped bring into the world. He is very logical and realistic, though optimistic. He took our histories, asked a hefty amount of VERY PERSONAL questions, scribbled lots of notes and described to us the process of fertility treatments.

Dan asked me to use the same analogy the doctor used with us, so I'll try to paraphrase as well as I can: over the next few weeks, we will gathering all of our 'cards' (information, stats, etc.) through tests and monitoring. Once the 'deck' is ready, we'll meet with the 'expert card player' (the doctor) to help us play the best 'hand' with the 'cards' we've been given.

The doctor made it clear that he is not going to be making "something impossible possible, but something improbable probable." We liked that, especially Dan, who has recently taken to thinking like an economist. Math teachers.

As it stands with the information we have now, the doctor has given us fairly impressive odds of having children. Yay! Even with the chemo-induced low numbers, the doctor said that that alone would not prevent us from conceiving naturally. Which led to him thinking that maybe something is going on with me. (Or, he said we just have incredibly unlucky timing!)

Somehow, with all of the focus on Dan's cancer and treatments and the well-known probability that chemo reduces fertility, we never stopped to think that maybe I was contributing to this whole lack of baby issue. Well, Dan did, but he thought it wasn't likely. So, now that that door has been opened, we are a step closer to finding any possible problems and fixing them. Which also puts us a step closer to becoming parents!

The not-so-fun part of the appointment was going over The Plan. Lucky for Dan, most of his part of The Plan is done for now. Unlucky for me, I have a lot to do in the next couple weeks. We'll spare you the details, but if you find me to be a little moodier or grumpier than usual in the near future... sorry. X-rays, blood work, glucose testing, ultrasounds, scary needles going scary places, etc.

Dan keeps reminding me (in a faux French accent): "Iz for de bebe!"

Anyway, once all these tests are done, we meet with the doctor and decide upon the next steps of The Plan. This will include a cost-benefit analysis, too. I hope I don't fall over after hearing the final numbers!

We found out today that my insurance will cover 50% of all the diagnostic work which is FANTASTIC news. This is very rare. Thank you, LORD. That being said...the next 2 weeks alone will be around one of Dan's paychecks. God will provide.

We left feeling encouraged and more optimistic than we have felt for a long time. I'm not expecting a pregnancy to be right around the corner or anything, but I no longer feel that it is a never type of situation. This is a big blessing.

Praises:
1. Insurance coverage
2. Good timing with tests
3. Jamie made it back from Israel safely
4. We feel optimistic!

Prayer Requests:
1. Dan's PET scan tomorrow...let it show nothing lighting up or abnormal at all. With God it IS possible :)
2. Grace in scheduling all of my tests next week.
3. Clear results and wisdom for the fertility doc to help us make a plan.
4. Patience and peace as we wait.
5. NO MORE CANCER!
6. Success in starting a family.
7. Oh, and Dan has a cold that he'd really like to get over soon.

Tuesday, March 13, 2012

The non-news update.

We haven't blogged because we haven't had any news. Ugh.

No PET yet because insurance took forever to authorize it. It finally got scheduled for this Thursday (3/15). As a reminder, the PET scan may not clarify things as much as we'd like. Since the test shows increased of metabolism, so things with high metabolic needs will light up. Types of things that light up include: tumors OR infections. Good grief. Anyway, depending on how much things light up, the oncologist and interventional radiologist decide what to biopsy. Only a biopsy will actually tell us what is going on and that is several weeks away.

Dan wrote to his doctor up at Stanford who has been with us through every piece of Dan's cancer journey and sent a copy of the CT scan. The doc said he is "cautiously optimistic" about the results. He obviously can't tell what everything is just from a picture on the screen but said that the lymph nodes were actually present on previous scans (surprise?). Also, he said that the liver is looking pretty good to him. The only thing that bothered him was the area on the lung. He is fairly comfortable saying that it doesn't look like metastasis, but was sure to tell us he cannot be positive.

So, cautiously optimistic is our motto for now.

In other news, tomorrow we meet a new doctor...the fertility specialist. It would have been nice to tell you that between the last post and this post that we don't need this doctor's advice, but alas...It will just be a consultation and discussion of financial expectations. Hopefully, the doctor will shed some light on our options and give us some hope in the area of starting a family. Since loans are paid off, we won't be waiting long to start the early stages of treatment. It's still strange to think about what will be involved (medications, tests, invasions of privacy, etc.). Even a little scary, to be honest.

One step at a time!

Prayer Requests:
1. PET scan that shows NOTHING lighting up
2. Biopsy results that show NO MORE CANCER
3. A good doctor's appointment tomorrow...one that gives hope and excitement!
4. Provision for financial expectations of fertility treatments
5. A baby with our good looks, Dan's intelligence, my communication skills, Clifford confidence and the Howen musical abilities! Ha. (Or, just the baby God wants us to raise for Him)
6. Peace and hope and peace
7. A stronger, even healthier marriage :)

Wednesday, February 22, 2012

Not what we were expecting

I haven't had to write a blog post like this for a while. Since November of 2009, actually. A blog post in which we report something other than good news.

We returned a couple of hours ago from Dan's follow-up with the oncologist (Dr. S). Unfortunately, the CT results were rather difficult to interpret. A few things were clear:
1. There was some shrinkage of the ablated area in the R lobe of the liver (good)
2. There are some shady areas in the liver and R lung that could be either post-treatment changes or new tumor growth (could go either way)
3. There are 2 enlarged lymph nodes that have not been seen on CTs before. One is in the chest by the lungs and the other is down closer to the diaphragm and intestines. (bad)

If all the questionable areas are just Dan's body recovering from the ablations and infection last summer, we just have wait and keep a close eye on it. However, if any of them do represent new tumor growth...well, that's a whole different story.

The only way to tell the difference is to biopsy the areas that are suspicious and see what's there. The most disconcerting areas at this point are the lymph nodes as that is a very common first site of spreading disease. So far, Dan has not really had much cancer growth in his lymph nodes. They actually removed several nodes during his Whipple and found no evidence of cancer at all. Thus, seeing these new lymph node swellings is not promising.

The oncologist was quick to get to action and called one of the interventional radiologists (IR) at our hospital to re-read the CT scan. The IR doc who looked it over said one of the lymph nodes is too close to the intestine to biopsy safely and that he wants some more information before he biopsies the other lymph node or the problem area of the liver.

Dan will be having a PET scan next week to see what (if any) of the areas are active "hot spots", meaning if any of them are metabolically active and growing. With that information, the IR doctor will be able to take a biopsy of the most active spot. We'll meet with Dr. S in 2 weeks to discuss the PET results and the next steps.

While Dan and I are trying to be calm and hopeful and optimistic about these findings being inconclusive or just inflammatory, we are also having to be realistic. Dr. S stated today that if Dan's cancer has returned, he would most likely send us back to Stanford to meet with Dan's original oncology team for options. Chemo would most likely be the first step, though other radiation or treatments could be discussed. My favorite line today was when Dr. S said that he wanted Dan to get the same treatment as all the billionaires (Swayze, Jobs, etc) going to Stanford--and he'd try to make that happen.

In being completely honest, recurrence has always been a possibility. The whipple got most of the cancer, but the surgeon had to leave some of the dead tumors in the liver. The ablations should have taken care of most of the liver tumors and insured their deadness. Yet, micro-tumors are very difficult to target without systemic treatment (chemo). Dan's last chemo treatment was in April of 2008, so the tumors have a long time to do a little sharing elsewhere in the body.

All of us (including the doctors) have been hoping that Dan's cancer is dead and that the spots we see are just dead tissue. That is still possible, but the oncologist made it fairly clear today that the enlarged lymph nodes are directing us away from that possibility.

So, what now? We wait for the PET scan results and then wait for the biopsy results. We probably won't have a plan of attack until the end of next month in all reality. Until then, we are praying and trying not to go into panic mode (as if Dan could ever be in panic mode!).

We are also going ahead with our plans to see the fertility specialist. Some may see this as unwise giving the current situation, but if Dan does have more chemo, we may lose any chance to have children of our own. Also, we do not know the future and want to live in the present. We are both anxious to begin a family and are not going to let the new "what ifs" get in the way of our plans. Trying to have a baby in the midst of this is our way of remaining hopeful and trusting God--the only One who knows the number of our days.

As for how we are doing emotionally, we're okay. I cried a little, switched into nurse mode and tried to educate Dan on what Dr. S meant, started dinner, vacuumed and filed. (I process bad news by staying busy--so I guess we could thank Dr. S for the clean house we are now enjoying!)
Dan took it all in, asked questions, interfaced with our parents and prayed with me. He is still as optimistic and calm as ever. We're okay.

Please join us in prayer. We need it. Thanks.

Prayer Requests:
1. More conclusive results from the PET scan (disappearance of tumor activity would be great!)
2. Wisdom for the doctors.
3. Ease of scheduling for appointments and procedures
4. No cancer cells to be seen in any biopsy results
5. Peace and hope for both of us and our families
6. An encouraging meeting with the fertility specialist
7. PRAY FOR REMISSION IN THE NEAR FUTURE
8. God's healing hand to touch Dan

Wednesday, February 15, 2012

Restless hearts

No, this is not a post-Valentine's Day let-down blog.
(I actually had an amazing Valentine's Day! I worked, so we couldn't go out to celebrate or anything. BUT Dan had plans for the day. I came home to a house full of good-smelling candles everywhere, French toast cooking in the kitchen, chocolates on the table (from Dan's classes) and the most beautiful bouquet of red and white tulips waiting in the bedroom. We sat in our PJs, ate dinner by candlelight, exchanged love letters, and snuggled. I mean honestly. It boggles my mind that this guy loves me like he does.)

On to the real purpose of this entry: my own restless heart. I am not restless out of unrequited love or disappointment. My heart is restless out of fear and worry. This is the opposite of what God has called me to be. I have always been a self-proclaimed worrier, but I really need to work on this sinful part of my character. Yes, worrying is sinful. God knows all and loves me perfectly. Worrying says I do not trust God or think Him big enough to handle my life. Yikes.

God reminded me of this today during devotions. I read Streams in the Desert everyday, and today's writing hit home. Here's an excerpt--a poem by Edith Willis Linn:

Dear restless heart, be still; don’t fret and worry so;
God has a thousand ways His love and help to show;
Just trust, and trust, and trust, until His will you know.
Dear restless heart, be still, for peace is God’s own smile,
His love can every wrong and sorrow reconcile;
Just love, and love, and love, and calmly wait awhile.
Dear restless heart, be brave; don’t moan and sorrow so,
He hath a meaning kind in chilly winds that blow;
Just hope, and hope, and hope, until you braver grow.
Dear restless heart, repose upon His breast this hour,
His grace is strength and life, His love is bloom and flower;
Just rest, and rest, and rest, within His tender power.
Dear restless heart, be still! Don’t struggle to be free;
God’s life is in your life, from Him you may not flee;
Just pray, and pray, and pray, till you have faith to see.

Awesome. What do I need to do? Trust, love, hope, rest and pray. That's it.

Instead of thinking that Dan's oncologist won't speak to me at work because Dan's CT was bad, perhaps the doctor is just busy! (duh)
Instead of imagining that Dan and I are in incredibly in love because we won't have a long marriage to enjoy it, maybe we are just blessed with an amazing love story!
Instead of dwelling on the "what ifs", maybe I should just praise Him for what I have now.
Instead of waiting for the other shoe to drop, perhaps I should just keep walking on the path God has us on.

Oh, Lord help me to trust you more and more.

Friday, February 10, 2012

To our army of supporters :)

Well, the last time we updated anyone on here was almost 7 months ago. Oops. Life got busier and other things took priority over blogging...well, everything takes priority over blogging in my mind!
However, we acknowledge that there is a small army out there that loves us and takes time to pray for us and deserve to know what is going in our lives. Accordingly, I am going to TRY to jump back into this endeavor. Here goes...

Dan got out of the hospital after 5 days in July for the post-ablation abscess, went home with PICC line number 4 and a month of IV antibiotics given by his home health nurse: moi. He spent another 3 months on oral antibiotics. Yikes. He is still following up with the infectious disease doctor to monitor his infection/inflammatory status, though he is finally off of antibiotics.

Since I have a job with incredible insurance, we switched oncologists to one covered by said incredible insurance. I work with this oncologist all the time at the hospital, so it was easy to make the decision. He is compassionate, intelligent and very humble. Humility in MD terms means being able to admit not knowing something and calling someone who does know. He has already told us that he has the nation's leading neuroendocrine expert attached to Dan's file in case he needs treatment options. Good to know, though we hope he never has to make that call!

As far the status of Dan's cancer, we've been in the longest "watch and see" phase of this journey. Dan thinks this is awesome; I think this is scary. The scary factor is increasing daily by the fact that Dan will be having a CT on Monday (Feb 13th). We'll meet with his oncologist a week after that to hear the news. God willing, the news will be "nothing new". Dan is expecting nothing different. I hope he's right. Please pray that we get EXCELLENT news from the oncologist.

In other news, by the end of the week, Dan and I will be officially free of college loans! Woohoo! Now, we can start saving our money toward other things. What are these "other things" you may ask? A down-payment on a house (in a few years), a new car (when ours eventually die), and babies.

Yes, I said it. Babies.

No, I am not pregnant. Not right now, but not for lack of trying.

We've been hesitant to discuss this issue in our lives because it seems trivial or too personal. Also, it hurts to talk about. Yet, in blogging about our lives and Dan's battle with cancer, this is something integral.

4 and a half years ago, Dan was fighting for his life after receiving a terrible diagnosis. I told God that I would be happy to have to worry about infertility because that would mean Dan at least survived. Years of prayer and medical treatments and surgeries have allowed for Dan to be healthy and thriving. There is always the fear of the cancer returning, but we choose (most days) to live in the blessing of the present. I daily praise God that my husband is alive. This is a miracle.

A while ago, Dan and I decided to start trying to have children. This in effect simply meant not trying to not have children. We have both seen doctors who have given us some 'prognosis' of our chances. Dan's chemo has hindered his fertility. I will spare the world the details, but suffice it to say: less than normal but not zero. Right now, we are working with the thought that conceiving a baby on our own is possible but not very likely. We both knew this was a reality of cancer treatments.

With every drop of Taxol or Carboplatin, Dan stepped closer to surviving and stepped further from being a father. I cannot imagine my life without him and pray that I will never have to find out. However, we are now living with a different and biting kind of grief. We may never be parents.

As we watch our friends have babies or see pictures of ultrasounds on Facebook, sadness always mixes with our excitement for them. There is a box of pregnancy tests in my drawer that I'll probably never need. There are 49er pacifiers in Dan's closet that will probably never be opened. We may never have onesies or baby socks in our laundry pile. We may never know the exhaustion of sleepless nights with an infant. We may never get to hear our parents argue about which side of the family the baby looks like.

I apologize if this sounds like a pity party. That is not my intention. We just want our loved ones to know this is our reality right now. Dan and I are blessed immeasurably with jobs and relative health and amazing families and a wonderful church...and love. I mean, we are seriously still head-over-heels in love with each other. Man, I got a good one!

All that being said, we are hurting. Hopeful, but hurting.

This doesn't mean we don't want to hear your good news or that I won't try to borrow your babies for a cuddle-fest. This also doesn't mean that you can't ask us about it. Good grief, every day we hear someone ask us why we're taking so long to start a family. It's okay. Just know that you might win the lottery and end up with me sobbing on your shoulder as I tell you why we don't have a baby yet. I don't mind if you don't mind!

We have been waiting for loans to be paid off and for Dan's next CT scan before making an appointment with a fertility doctor. By the end of the month, both of these things will be done. So, expect an update of some sort in the next month or so.

(For those of you concerned that we are not mentioning adoption--we're not against it AT ALL. There are, however, some major hurdles to jump over because of Dan's health history. I'll write about this another day.)

We don't want this to be a burden of knowledge on our friends or family. But, we do need your support. We need prayer! God has never promised to give us children, but that doesn't mean He won't. Please join us in prayer as we press onward in this new journey together. Prayer for God to intervene and allow a natural pregnancy so we don't have to take out more loans for fertility treatments (Insurance covers abortions but now fertility treatments. Sad). Prayer for peace and contentment with our blessings. Prayer for wise doctors and good advice. Prayer that this will drive Dan and I closer together in love and commitment.

Alright, that's enough for now. If you read this far--thank you. It feels good to not be so alone in this. We love you and will try to be better 'pen pals' in the near future!