Monday, November 9, 2015

Day 22: Yep, still in the hospital

 "I don't know karate, but I do know 'crazy' ...and I'm not afraid to use it." ~James Brown 
Sorry for the lack of updates, but unless you're especially interested in vomit and diarrhea, I unfortunately haven't had that much to write about. We have been given conflicting reports on what Chelsa's blood counts have been the past couple of days... which is a bit frustrating. First we were told that her counts were up to 360 on Sunday, so while she felt pretty awful all weekend, she was expecting to go home today, but instead was told her numbers had slumped back down to 300. Super discouraging. However, a nurse came in this evening and told us that her numbers had been at 390 and were now 370. ...either way, not the 500 that we've been hoping for.




The good news is that Chelsa has been feeling a lot better today. I was pretty concerned about her this weekend (and was feeling pretty awful myself), her eyes couldn't really focus and most of her time was spent curled in a little ball, so it was great to see her up and causing trouble today. She said she is feeling more like herself, but that also means feeling even more stir-crazy. She is really missing fresh air, home, and normalcy. They took her off from one of the antibiotic drugs today (levaquin), which we take as a good sign. We also think that antibiotic has been a major contributor to her stomach aches and "uppie-chuckies," so hopefully that will begin to get better.  


"I'm really hoping to go home tomorrow."  ~Chelsa (every day for the past two weeks)

She has absolutely LOVED the Q&A letters that folks have sent to Sarah. Thank you to everyone who contributed! ...and for all of the sweet cards, notes, posts, and texts. That has been a huge help when she starts feeling really trapped here. Nights are hard, so gearing up for that now, but we're feeling hopeful for a good report tomorrow. 

I didn't get permission, so hope this is okay, but I just have to share a few highlights from a couple of the notes that we received today...
What do you like most about Chelsa?I love her honesty. If she likes something, she says it. If she doesn't like something, she will… Be very gracious about it. I know I can always trust her to tell the truth. She is so full of love it comes seeping out of her pores.  She is genuinely interested in other people, makes others feel comfortable around her, and makes people just want to be with her.  It's hard to say what I like most about Chelsa, because there really really is so much to like.  Her honesty, Love for truth, and Grace fill her whether she's taking joy in a sweet moment, or even grieving pain.  I love her for letting me share in her moments.
What lord of the rings character do you think Chelsa is most like?Some days she's a humble and adventurous Bilbo, some days she's a commanding Gandalf, but if you cross her she's as tenacious as Smaug. 
If Chelsa could choose a superpower what would it be?In addition to her current ability to silence Matt with just one look... travel through time so all this stupid cancer stuff will be over with? Seriously, if I could choose one for her that's what I would choose.  
What Bible verses on your heart for Chelsa right now?Zephaniah 3:17 ~ "He will rejoice over you with His gladness..."


A good friend also recently started a playlist of sing-alongs at concerts for us... 
I've been thinking about the idea of community this week. As we go through hard times, there is nothing else that can remind us that we're not alone like our chosen communities can. Chelsa Wojo and Matt Wojo are dealing with some stuff many of us could never imagine, but their positivity is amazing and I hope they know they are always in our thoughts. I love when a band can put their egos aside and let the audiences take a song away from them. Songs become our own. Songs are important. They become more than the band that sang them, more than the performance that was happening. In these rare instances the moment of community is exhilarating. I hope you all have some favorite sing-alongs.
Here is a link to that playlist in case you use Spotify and would like to listen and/or contribute a few of your own favorite sing-alongs: https://open.spotify.com/user/1247918027/playlist/1TKYAZHRObukLg7jsJBCwV 




Friday, November 6, 2015

The good, the bad, and the gatorade


The good news: Chel's counts were at 250 today! Doc said we might be able to go home tomorrow or Sunday.

The bad news: That was first thing in the morning and she has been feeling lousy and running a fever between 100-101.6 all day. They ordered blood cultures and did a chest X-Ray, but also said it could just be a "drug fever" from consistently being on a variety of meds for the past three weeks. She will be able to get off them once her counts are over 500, so hoping that's tomorrow. Hoping things will be on the upswing tomorrow and that this fever doesn't turn into any serious problem, but guessing that our hospital stay will be extended a bit longer.

The Gatorade: the only thing that she has sounded good to her today. (I felt guilty heading down to Café Presse for a Croque Madame, but I just needed it--so good). While the idea of food still makes her fee sick, Chelsa has been very concerned with what we should bring in for the nurses this weekend as a thank you gift for being so amazing. What do nurses like? We were thinking maybe Macaroons from Bakery Nuevo...?





Also, as I write this late on a Friday night, Chelsa's sister, Sarah, is at our house vacuuming, bleaching, scooping cat litter, washing laundry, changing sheets, fending off creepy neighbors, and making sure our little apartment is in great shape for our return. She is basically like a superhero in many ways and we are sooooo thankful for her and her wonderful little family. 




*One more thing-- just found out that we are likely losing our really good health insurance at the end of the month -- good timing, but I will have some complicated insurance decisions coming up soon. If there are any health insurance experts out there that want to help me with some wisdom, please hit me up.

Thursday, November 5, 2015

Day 17 - Cells are growing!

We are on day 17 of our hospital stay. Our sweet friends (& marriage class mentors), Rick & Cheri, recently asked if there is anything they can do to make our lives easier as we live in this little hospital room. 

I couldn't come up with anything so passed the question to Chelsa, to which she replied: "a pet goat."  ...so while it's good that she is thinking long-term, and that would probably be a more environmentally friendly alternative to all of the take-out I've been picking up, I think this may be an indicator that we've been here a little too long. 


The good news is that Chelsa's blood counts have finally begun to rise!

After a stem cell transplant, in which the immune system is destroyed by a chemo drug, then previously frozen stem cells are returned, we wait for signs of "engraftment." Engraftment is when the new blood-forming cells start to grow and make healthy blood stem cells -- a super important milestone in the transplant recovery process. The main indicator / measure of successful engraftment is Neutrophils -- a type of white blood that are important for fighting bacterial infections. An absolute neutrophil count of 500 or more for 3 days in a row is a sign of engraftment.

For the past two weeks, Chelsa has been at 0 neutrophils, 0.3-0.7 white blood cells (4.5-11 is normal), 10-15 platelets (150-450 is normal), etc. so VERY vulnerable to any kind of infection, bacteria, sickness, etc. Thankfully, she has not developed any fevers, infections, etc.! and her counts are starting to rise again. Here is what this week has looked like:

Tuesday:  20 Neutrophils (our first sign of growth!)
Wednesday:  40 Neutrophils
Thursday: 80 Neutrophils

They say that once these cells start growing, they typically do so at a rapid pace. It will be several months before Chelsa has a fully built immune system again, but we are hoping to get above 500 Neutrophils by this weekend so that they can take her off the constant antibiotics and we can go home!

A New Look: HOT BLONDE

*On a side note, a fellow 12th floor cancer warrior recently gave us some pro-tips. One of which is that Chelsa can get a free wig if she would like... so while she is embracing the bald look, she thought, what the heck, might as well check it out. I won't post all of the trial pictures (although they are pretty good and you may want to ask her about it in person). Here's what she landed on... introducing, my new hot-blonde wife!




Sunday, November 1, 2015

There's a new action hero



*Also, our friend Tess had an idea that is under serious consideration...
Head tattoo map of Middle Earth (from Lord of the Rings)

No more sparrows :(

You have been chosen, and you must therefore use such strength and heart and wits as you have.-J. R. R. Tolkien
The strength and heart and wits that I have seen from Chelsa these past two weeks has been pretty humbling. While her body is still struggling -- numbers are still really low, can't keep food down, lots of stomach cramps -- her spirit is still going strong. Her platelets are low enough now that she will need to get a transfusion. Hoping that will help and go smoothly. Overall, we're told that things are going pretty well, so thankful that there have been no fevers or other scares. 

Unfortunately, the hair is coming out and it is looking like we may just do a full head shave today. This has been a fear for Chelsa for some time now, but our friend April, an incredible professional hair stylist, offered some encouraging words: "If it happens it happens it's a badge of victory in kicking cancers ass!  ...The biggest thing to remember is you are giving the ugly c its eviction papers and that is the best thing ever. Not to mention that your beauty outshines hair."



I agree wholeheartedly and look forward to seeing Chelsa in a short-do. Please don't rush too quickly to shave your head in solidarity... I know that so many of you love Chelsa so much, but she loves cute hair too much to see more of it lost. It has been awesome to see all of the notes, texts, phone calls, FB comments, gift baskets (shout-out to you, Marcouxs! Thanks for including me too!) ...and prayers lifting her up from all over the world. This is really hard, but Chelsa is already making fun plans to capitalize on all of this attention -- currently she's considering a Henna head tattoo. 

Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. -Luke 12:6-7


Thursday, October 29, 2015

Our 11th day in this tiny room

...and we are SO READY to go home.

I never had the good fortune to live in a college dorm room, but I imagine it would have a smell similar to the one growing in our tiny hospital room. Thankfully, I had some heavy-garlic meals early in our stay which I believe have infused a healing property in the air contributing to Chelsa's good health. While her blood counts are still very low, we are to the point where they are beginning to bounce back. It will be a really slow process, probably 3-4 months to get back to normal, but so far so good. She currently has "Rhino-virus" (a cold), so was confined to our stinky room & banned from walking the halls for a while, which broke her spirit. Her sweet doctor (the king of the hospital) made a few calls after talking to her this morning and just had that lifted...so lots of celebratory hall walks today!

It seems there have been lots of deaths on the 12th floor this week. The visitor lounge conversations had and overheard with folks losing moms, dads, and wives has been pretty heavy. One small bright spot has been all of our great friends helping to rebuild the visitor lounge DVD library. It was looking pretty sparse, but we've had around 40 movies donated so far so at least there will be some good stories available to escape into for a short while.

Hoping that we will be able to return home by the beginning of November, but it all depends on Chelsa's immune system bouncing back, so prayers for that to happen and to keep her safe and protected until it does please.

In the meantime, thanks for all of the support and encouragement! Here's a few photos of what you've been missing out on...
~M & C


Our tiny dorm room--Chelsa's bed.
Matt's bed.

Our fancy TV and food stash.


Our awesome room art! *It's "Woshientn" (sound it out).
*That's also a self-portrait by Dr. Kaplan, our awesome oncologist.
12th floor movie library before.

12th floor movie library after! (this isn't even all of them!)




Wednesday, October 21, 2015

Stem Cells

We've gone back to the future with the flux capacitor cryoshipper... time travel smells like creamed corn.

Tuesday, October 20, 2015

Fighting cancer SUUUUUUUUCKS!

Well, the battle is waging. On Monday, Chelsa received Melphalan... a derivative of mustard gas (the lethal weapon used in WWI)... but not an effective "alkylating agent" used to fight Multiple Myeloma.

Her body is handling this about the way you might expect... revolting against everything inside of it. Today (Tuesday) was her day of rest... which really was just a day of feeling nauseous and lousy. Neither of us slept last night because she was so sick, so things are not awesome... especially because we know that they are supposed to get a lot worse after she gets her Stem Cells back tomorrow. BLURG!

The good news is: so far the nurses have all been awesome (which makes such a huge difference); we were told that if she chews ice chips / eats popsicles, she may be able to avoid the "Mucus-itus" side effect of mouth sores... so Chel ate the hell out of some ice chips for about 6 hours... so far no mouth sores!; at work today I got set up to work remotely from the hospital for the rest of the week; and... Star Wars Force Awakens trailer/tickets going on sale!

...and the BEST news... Chelsa is two more days closer to beating this stupid stupid cancer!

Please pray for Chelsa's strength, for rest tonight, for no more nausea, for the ability to eat (& retain) some healthy food, and particularly for her body's response to receiving the stem cells tomorrow.

*Late addition: Chelsa's doc just came in and said that her nausea response with the Melphalan was "worse than average" (she's not used to hearing that rating!), BUT that besides "smelling funny"... she may feel just fine after getting the stem cells tomorrow... at least for a few days. Also, we're watching Charlie Brown & the Great Pumpkin... so that's not so bad.

"No more chucky-uppies" ~Dr. K

Saturday, October 10, 2015

"It's a dangerous business going out your front door."

October 19th: The final battle begins

Chelsa is a quick study in recovering from major health trauma, so she has had no trouble bouncing back after the stem cell extraction. The final count was 10.5 million (which are now frozen, -90°). We are told this is enough for the transplant and a second try if necessary --hopefully not necessary, autologous transplants are not quite as effective as allogeneic transplants (using cells from a donor), but are much lower risk and still have very good success rates. She has also completed an Echocardiogram (heart check) and Pulmonary Function Test (lungs check) -- both good as far as we know. She is scheduled to begin Part 2 on Monday, October 19th. 



Here's what we know so far about Part 2...

  • First she will be checked into the hospital to receive some hardcore high-dose chemo drugs to kill any remaining cancer cells (also called conditioning chemotherapy) which will be administered over a one- to six-day period. (This will include Melphalan and we're not sure what else).  
  • After the high-dose chemo, she will get a day or two to rest and allow the drugs to clear from her system (still in the hospital). The chemo will have severely disabled her immune system, so any visitors will need to be extremely careful about germs.
  • The lab will then bring the still-frozen bags of stem cells to her room to be thawed one at a time in warm water, then transfused in through the port in her chest. Each bag takes approximately five minutes to transfuse. (The DMSO mixed with her Stem Cells to help preserve them causes some patients to taste and smell garlic during the transfusion and for a day or two afterward.)
  • The high-dose chemo will have completely wiped out Chelsa's immune system, so now her harvested (unfrozen) stem cells, which were not damaged by chemo, will help her immune system grow back. It takes these undamaged stem cells approximately ten to fourteen days to graft to the bone marrow and begin producing new red, white and platelet blood cells.
  • During this time, she will be extremely susceptible to infections (because of the lack of white blood cells), bleeding (because of lack of platelets) and fatigue (because of lack of red blood cells)... so will stay in the hospital where she can be monitored (and receive any antibiotic, antiviral or antifungal medicines necessary).
  • After the engraftment is complete, Chelsa can gradually return to normal activities -- coming home, but still being VERY careful to avoid exposure to any germs or activities that could lead to an infection. (No Roller Derby or America Ninja Warrior training during this time).

She will likely be able to return home somewhere around Nov. 19 (mostly a guess).

How you can help us...

#1) Prayer. We believe that there is a God, who is good, who is in control, who loves us dearly, and who hears our prayers. Specifically, please pray for:
  • Chelsa to be strong and at peace through this process, kept safe from anything that could go wrong, and uplifted through a miraculous sense of thankfulness, joy, and encouragement even during the hard parts.
  • For hair loss -- not the worst thing, but Chelsa really doesn't want to lose her hair from the chemo treatment.
  • Infertility -- there is a good chance of this, but also a possibility that her reproductive system will bounce back. We absolutely love kids and would really enjoy having our own, so this would be a huge gift.
  • Wisdom -- for her doctors and nurses to know what's best during this time, when to go by the book and when to trust their instincts or a Holy prompting (or a mouthy husband).
  • Freedom -- from multiple myeloma (the cancer in Chel's blood), from headaches, body aches, eye infections, restless nights, loads of doctor visits, yucky shots and drugs, and from all of the associated fears and worries. 
#2) Caution. Chelsa LOVES her friends (and especially friend's kids!). This makes it really hard to avoid contact with anyone who even has the possibility of being sick... but for the next few months, both Chelsa and I (Matt) will need to be especially cautious of being exposed to any sicknesses.

#3) Notes. The power that little 2-minute notes have... to encourage, to remind or reminisce, to provide a short update or a quick chuckle... well, it's huge. Many of you already do this regularly, so I guess this one is mostly a note just to say thanks! and that she will probably (hopefully) just be kind of bored throughout this whole process... so little notes (email, text, cards, whatever) are great. ...at least until we can hang out with you in person. 

That's the news for now. Thanks everyone! We will do our best to post regular updates as the battle continues. 
~Matt & Chelsa



Tuesday, September 22, 2015

10,000,000 Down!

Just an update that Chelsa hit 10 million Stem Cells today!!! Woo!!! She has to go in to get some platelets tomorrow morning because her counts are so low, but then gets her neck hose out and gets a much needed break from being poked and picked on every day. She is *very* ready for a break. Thanks for all of the prayers, support and encouragement!

Sunday, September 20, 2015

Starting the Stem Cell Transplant!

Well, it has been a long road to this point, but Chelsa is finally starting the Stem Cell Transplant process. After speaking with Seattle Cancer Care Alliance (Fred Hutch) and Dana-Farber Institute (in Boston), we have decided to continue receiving treatment from Swedish Medical. All agree that an Autologous Stem Cell transplant (no donor required) is the way to go. While it typically does not equal a "cure", it is much lower risk than an allogeneic transplant (donor). 

Here's a summary of what that looks like:


WEEK ONE




  • Receive Neupogen shots to stimulate white blood cells and grow more Stem Cells -- this means going across town to Swedish every morning around 8am to have blood tested and receive the shot in her stomach. (She's had wonderful drivers! Thanks Mom & Kathy!!!), This also means some serious bone pain from the stem cells growing in her bone marrow.
  • Have a big tube stuck in her jugular (neck) -- both an in and an out tube. A fairly simple surgery, but not fun. This came after spending all morning at the med center, running back across town for a 1/2 hour nap at home, then back to the hospital for a 1pm "appointment". She finally got in for the 15 min. procedure around 4:30pm. UGH! No it's not stressful waiting to have a hole cut in your neck while people cough up blood in the room next to you for almost 4 hours. (To Swedish credit, I guess they can't help it if a bunch of emergency-level patients come in at the same time).
  • Begin Harvesting!  Once her stem cell count gets to a certain point (I can't remember what), they can begin "harvesting". Basically this means being hooked up to a 1980s reel-to-reel tape deck looking machine with a centrifuge spinning around inside. The machine sucks blood out from one of Chelsa's neck tubes. The centrifuge uses gravity to separate white blood cells, platelets, and stem cells, from red blood cells and plasma. It puts the white cells containing her Stem Cells in a little bag, then pumps the red cells back in through her other neck tube (looking like really weak coffee compared to the sludge in the bag). Very weird and amazing to watch!
  • On Friday (her first harvesting day), her mom stayed with her and they were able to harvest 2.4 million stem cells! The goal is 10 million. They tell us that they can get all 10 million from some folks on day #1 and for others it takes 5-7 days with shots (in addition to the neupogen) that stimulate more growth.
  • On Saturday (harvesting day #2), I (matt) went with her for the harvest. I figured that I could definitely coach her into pumping out around 7.6 million stemmers so that she could be done with this business and get that neck tube out. (She can't shower or wash her hair... or sleep well / be comfortable... while that tube is in her neck, so she is motivated). The Cancer Center staff is *so awesome*, but I think I failed in my coaching because they were only able to get 1.8 mil.
  • Today is Sunday (harvest day #3) and we are back at it again. Chelsa is organizing her BFF Megan's Baby Shower this afternoon so is especially motivated to pump those Stemmers out. We spent most of yesterday evening preparing decorations -- It's a GIRL!  

Currently, Chelsa is feeling good. She is really enjoying the Johnny Cash graphic novel (from Traverse City). I'm good too--but missing last week's vacation life in Michigan. We really appreciate your prayers and well-wishes. 

Right now we are asking for prayer that they are able to collect the 10 million stem cells sooner than later so that she can begin recovering and preparing for the really tough stuff -- that will be one month from now when she gets the multiple myelome (cancer) blasted out with chemo and receives her stem cells back to grow cancer-free! 

Unfortunately this means that her immune system will get blasted too -- so she will have to avoid any possibility of germs, infections, etc. for a few months. So no parties or trips until about February if all goes to plan. BUT that means something AWESOME is coming in February and that we can possibly expect 10, 20, 30 years of living Cancer-Free! Prayers for THAT please! We're also hoping that a cure will be discovered in that time! 


The stem cell harvesting machine. Yep, she's still got a smile!


Loves the CASH.


Stopped by to wish Joel a Happy Birthday and Quincy decided to cheer us up.
Chelsa sent this to me a little while back (courtesy of Paul Tripp) --- 


AFRAID

There are many things I wish weren't true of me:

  • I wish I didn't doubt the presence of God, but there are times when I feel as if life is pitting me against The World.
  • I wish I wasn't restless before bed, but there are nights when I can't fall asleep because I'm concerned with what tomorrow will hold.
  • I wish I wasn't envious over others, but I catch myself thinking that my life would be better if I had what they had.
  • I wish I didn't struggle with God's sovereignty, but there are moments when I wish I could rewind time or rewrite the script to my life.
Here's the strange thing: I spent many years discovering what the Bible had to say about those issues. 
From a doctrinal standpoint, I have all the answers I need to believe in the power, presence, and promises of God.
Perhaps even more ironically, I spent many years as a biblical counselor helping people wrestle through their doubts and lack of faith. 
By the grace of God, people would come to me paralyzed and leave with newfound courage. And yet, I still find myself fearful and doubting.
Here's the conclusion I've come to: no matter how theologically trained my brain is, my heart is still prone to forget.
So once more today, I will remind myself of the truths of the Bible.
Not because my brain needs to be taught a new concept, but because my wandering heart needs to be ushered back into the throne room of grace.

  • The Bible tells me that Jesus is Immanuel, which means, "God with Chelsa" [insert your name here] in every moment of every day.
  • The Bible tells me that I'm never first to arrive in a situation, location or relationship. God was there before me, so I don't have to fear the unpredictable.
  • The Bible tells me that everything I'll ever need to thrive will be supplied by God, in just the right quantity at just the right time.
  • The Bible tells me that God has never fallen asleep at the wheel, and that everything I've been through in life was purposeful and under his control.

Whatever you're doing right now, stop and pray for the grace to remember today. Your Savior never gets weary of your requests. He loves to hear and answer.




Wednesday, August 12, 2015

The Countdown is On!


It's not quite the final countdown, but this one will hopefully bring me to 10-20 years of remission! 





We just got home from meeting with the Dr. & the Transplant Nurse and have way too much information...

Monday, Sept. 14th, I start the stem cell transplant process!! Yay!! I was hoping it would just be a quick little thing but it turns out, there's a lot to it and *maybe* it's a big deal. 

The first step is harvesting my stem cells before the transplant. I will go into the treatment center every day and get a shot to stimulate white blood cell growth and flood my system with stem cells. A catheter will be put into my jugular vein (ew!!) and they will take my blood and in a process similar to dialysis, my stem cells are separated from my blood and collected. Usually people going through this process need transfusions and are pretty wiped out.

I'll have 3-4 weeks to recover, get my red and white blood cell numbers back up there so I can fight infection and have a couple tests to make sure my body is ready for the transplant. I will have to be super careful about germs during this time. When I'm in a good place, I think around the beginning to mid October, the actual transplant will happen. This happens in the hospital. I'll get a dose of conditioning chemo to get rid of any myeloma that's left in my body and then I get my stem cells back. I'll be in the hospital for a couple weeks to make sure I have the care I need for the process of my stem cells grafting in and to fight any infection. I'll be like a newborn at this point as far as my immune system and have to be super cautious.

That is the super dumbed-down version, but I hope it's helpful to understand what is happening and how we could use your prayers, love and support. We couldn't do this without you, our friends and family and the love and faithfulness of God! 
A little hike on the Preston-Snoqualamie trail.

At Treehouse Point!!

My handsome hiking companion.
                              

Sunday, April 26, 2015

Just a Quick Update!

I heard from my oncologist last week that my M-Spike has gone down to 1.5! The goal is zero and hopefully this trend will continue and I'll be ready for the stem cell transplant soon. Feeling encouraged and so thankful for your prayers.

Also, we just inherited a new garden plot and are super excited about it. Already have raspberry bushes and just planted a blueberry bush. Do you like our sign?

Tuesday, March 24, 2015

Daring to Daydream

Yesterday I sent Matt this text message: 


It may seem like a small thing, but I think yesterday really was the first time that I have dared to daydream that I could be through this cancer business soon. 

Here's why: 

  • Back in February, my M-Spike (how the cancer is measured) was at 3.7 and now it's at 2.2! The drugs that sent me to the ICU also knocked down the cancer quite a bit! The goal is zero.
  • I have started my new chemo and am feeling fine, just a little tired. See sappy text message above.
  • I will start a steroid in combination with the drug beginning next week, which is supposed to be way more effective.
Things to continue to pray for:
  • That the chemo is effective and that when I start the steroid, I feel ok.
  • Wisdom regarding where to get the stem-cell transplant. Our first thought was Seattle Cancer Care Alliance but Swedish Cancer Institute also does them and that is where I am currently a patient. 
Again, we are so thankful for our amazing friends and family who have come alongside us every step of the way. Thank you for your prayers, love and support! 







Thursday, March 5, 2015

Oh my stars, it's been awhile!

Sorry for the hiatus on health updates. 

A ton has happened since the last update and hopefully from Facebook or regular old conversations, we haven't kept our friends and family totally out of the loop! But, here's what's happening now!

Over the last year, I was on a drug that really helped knock down my M-Spike (the way the cancer is measured). I felt like me again. I was volunteering at an organic farm once a week, starting working part time at a letterpress studio, it has been pretty awesome. 

Around November 2014, the drug basically had done everything it was going to do for me and the M-Spike plateaued. We went to Dana Farber Cancer Institute in Boston and met with Dr. Munshi to get a second opinion. It was a reassuring, great trip and we felt ready to pursue an autologous stem cell transplant. According to Dr. Munshi and my oncologist, Dr. Kaplan (& Seattle Cancer Care Alliance), the plan was to start a 3 drug combo to really kick the cancer's ass, get the M-Spike as close to zero as possible and do the stem cell transplant. This would potentially get me 10-20 years of remission--and by then, who knows, Myeloma could be totally cured?! 

But, it seems like nothing has been simple for me...

We started the 3 drug combo in January. I got 2 doses and ended up in the ICU with an incredibly high fever--105.5! High fevers had typically been my response to one of the drugs, but this one was bad. I picked up a couple common viruses because of my lowered white blood cell count and it nearly did me in. It was pretty scary to say the least. Thankfully, I bounced back pretty quickly and within a couple of weeks I was good to go and ready to try a different drug in the 3 drug combo, in hopes that I would do better this time.

Again, I got 2 doses of the new drug and ended up in the ICU. Not my idea of a good time! This time, in addition to the fever and crazy vomiting, my blood pressure became dangerously low (like potential of organs shutting down) and my heart rate was incredibly high. It was super scary, but again, thankfully I bounced back very quickly and was home within a couple days.

My oncologist has agreed that I had a crazy reaction to the drug and has collaborated with his colleagues on what to do next. We are so thankful for this collaboration. I will be starting a new 3 drug combination on the 10th. Needless to say, your prayers are very much appreciated!!

Things to pray for:

  • That I do incredibly well on these new drugs and can safely and quickly get on the road to remission!
  • Matt and I are worn down. Still trusting God, but wondering how long we will be in this difficult place. Really hoping for some rest and for years and years of health!
  • That all these drugs don't cause infertility. We would LOVE to have kids.
  • Thankful for Matt's new job at Microsoft!!
  • Thankful for our incredible family and friends who have prayed, helped with meals, housecleaning and gone with me to appointments.

Some encouragements during this time:

  • This reminder of God's character.
  • I've been listening to Rick Warren's sermons lately and was encouraged by this one.

"I will praise the Lord no matter what happens. I will constantly speak of his glories and grace." Psalm 34:1 NLT 

"Rejoice in the Lord always; again I will say rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." Philippians 4:4-8


Sunday, June 22, 2014

Death

"Our dead are never dead to us, until we have forgotten them." ~George Eliot 
Gramma Woj and Aunt Patsy,
1946, as printed in Michigan
Outdoors Magazine.
Since we were married three and a half years ago, Chelsa and I have lost four grandmothers (five including Grandma Sowa the year before we married). Last week, Chelsa's "Gram" passed away and the week prior I lost my "Gramma Woj."  It seems that death, or the prospect of it, has consistently been a part of our lives in one way or another. It is one thing to understand that death overtakes us all, but it's another to have it play such a persistent, noticeable, and inescapable part of our lives. Neither Chelsa nor I were able to have great closure on the recent losses of our grandmas. Life get's so busy, money is tight, both our grandmas passed far from where we live, and neither of our families chose to have a large funeral. It's not at all that either of us really wanted to spend a lot of time weeping in funeral clothes, but it's simply hard to know what to do with the loss of people we deeply loved and felt very deeply loved by.

Chelsa and Gram, Nov 2013.
As we've discussed this, Chelsa shared special memories of always feeling loved and never judged by her Gram, even during some of her more rebellious phases (complete with the colorful geriatrically-repelling hair). She longed to hold her Gram's hand one more time, play a board game with her and try on some of Gram's amazing costume jewelry.  I long to head 'Up North' to the Cabin one more time with my Gramma Woj --along with cousins, aunts, uncles, and the typical giant crew that seemed to accompany her everywhere. Gramma and Gramps Woj managed to have ten kids, many of whom also had a handful of kids, who now also have a few kids (another two new ones arrived just this month). The thing was about my Gramma Woj, despite being constantly surrounded by the craziness of a huge family, neighbors that were stopping over on a daily basis, and all that's involved with running a very tight ship on a thin budget while providing for everyone's needs... she somehow found the time to make sure that I knew that I was her favorite. ...I know, this seems a little unfair to all of her other kids and grandkids, but 'it is what it is.' Or so I thought, until I began to discover that most everyone in our family felt the same way. I believe I've begun to better understand this being married to Chelsa. She shares the same gift for making everyone in her life feel extremely special and cherished. It's not just good people skills or some sort of trick, she genuinely LOVES people. The issue with loving people so deeply is that it makes loss all the more devastating.



Highschool graduation with
Gramps Wojo,Gram Bolle, Matt, Mom Wojo, and Gramma Wojo, 1995.










As I've been wrestling with the loss of three grandmas over the past few years (Gram Bolle-my mom's mom, Grandma Sowa-my stepmom's mom, and recently Gramma Woj-my dad's mom), I have also been wrestling with subconscious thoughts about losing Chelsa. Her cancer, it's effects, and it's lack of clearly effective treatments are constantly looming over our heads. ...So WHAT DO WE DO WITH ALL THIS?

I recently read some things from the Scottish theologian Sinclair Ferguson that I wanted to share...
We have already seen that God's work in our lives is, generally speaking, long-term and progressive, rather than sudden and critical. But we have noticed also that the Christian life is punctuated by crises. It begins with the great crisis of regeneration with its inherent sanctifying power in which we are set free once-for-all from the reign of sin. The ensuing struggle which we experience is a long-drawn-out process of warfare against the world, the flesh and the Devil. But that struggle has an end. 
Gram Bolle lovin' on Me, 1989?
This rings true for me -- for many of us life is hard. That has seemed especially true for Chelsa and I lately, I'm sure it seemed very true for our grandmothers as they lived through the Great Depression, the sicknesses and (for some) deaths of children, the loss of their husbands (Chelsa and I have lost all of our Grandfathers as well, each preceded their wife in death). So given how hard life can be, in some ways, death should seem like a relief, if not a joyous occasion for those who believe in a Heavenly afterlife... as Chelsa and I do... yet, we don't really feel like celebrating and such sentiments can feel sort of hollow. This rang especially true as I sat with my Grandma Bolle, who by most comparisons all would agree passed 'Peacefully' in her hospital bed... but I saw her fight for breath, her fear of moving on, and felt the sorrow of leaving her beloved family.

Thankfully Sinclair continues on...
In Scripture, death is regarded as part of the curse of sin. Death is not what we sometimes mistakenly suggest it is -- a blessing, a release, a peaceful end. All of these may be found by the Christian in and through death, but they are in fact contrary to the true nature of death. For death is disintegration. It is the breaking of a union which God created. In and of itself it is an ugly, destructive thing -- it is 'the last enemy'. 
Death severs us from those we love... it also breaks apart our body from our spirit. That is a divorce of a magnitude beyond my frail understanding. Simply as a prospect it is a terrifying one.

Gram Bolle (born Irene McGarvey)'s
New Testament Bible from 1927
Great-grandpa Bolle's
Dutch Bible, printed 1919
 I have felt both the terror of losing the people I love most, as well as the terror of losing my own life. While, thankfully, I have never myself been in all that serious of an accident, nor been diagnosed with any life-threatening diseases, I have been in a few brief situations, as many of us have, that allowed my mind to go to that place of terror and panic that would drive one to grasp for continued life at any cost. One somewhat unique thing about, however, is that my family lineage holds a long line of faith -- Catholic on my Dad's side and Protestant on my Mom's (if we want to put denominational labels on it). On my bookshelf I have a small New Testament Bible that was given to my Grandma Bolle for good Sunday School attendance in about 1927, as well as a small Dutch Bible printed in 1919 that belonged to my Great-Grandfather. While I have not always been a believer, I have always belonged to Jesus and I have felt his presence throughout my life. Actually, the majority of both Chelsa and I's family members profess belief in God. Though, as with many families I imagine, how these beliefs shake out varies widely and, for the most part, we don't talk about our beliefs much (with our immediately family being an exception). It becomes a worry -- is this or that family member 'saved'?! Even for myself, during those times of terror at the prospect of losing someone or losing my own life, I wonder... do I REALLY believe?


We see varying responses, from fear to carelessness, sorrow to glad anticipation, and these responses are largely determined by the prospect men have beyond death. 
In the New Testament when we read of death it is usually of its defeat. Jesus Christ came in our flesh in order to taste and share our death. He became like us, in weakness, temptability and suffering in order to die. When our Lord contemplated death as it is in itself he said that his heart was filled with sorrow. He asks God that such a cup might pass from him. We should not therefore lose sight of what death itself is -- the destroyer of life. Paul (in the New Testament) tells us that by bearing our guilt and punishment on the cross, Christ was able to disarm the principalities and powers... he dealt with the basis for Satan's grip on our lives, namely sin. The grip which the Devil has on a Christian is weakened and broken... we are no longer children of wrath... we may now be set free from our bondage to the fear of death!
Matt & Chelsa's Wedding with
Chel's Grandma Beard, 2010.
I typically do not feel in anyway thankful for suffering, for losing my grandparents, nor for daily facing the burden of supporting my wife and partner as she battles cancer. I more typically just feel angry or sad. Since I've professed my own belief in God and the sacrificial redeeming death of his son Jesus on the Cross, I have noticed a profound change though. It didn't come all at once, like a flipped switch, it has grown over years, tremendously benefiting from reading, TALKING deeply with friends and family, LISTENING to good teaching, lots of sermons and preachers and Godly men and women, and lots and lots of PRAYER -- talking things out with God.
For the Christian does not contemplate death in itself. He now sees it, as he sees all things, 'in Christ'... I know that when I walk through the valley of deep darkness or death, he will be with me. I will not be alone. I will be accompanied by One who is the Resurrection and the Life. That is what Christ's death does to the powers of darkness (I Cor. 2:6, 15:24). They are still in existence, but have been deprived of all authority. We call this our victory over the terrors of death. 
Death, when its sting is drawn and its powerful fears are rendered harmless, is but the means of our awakening on the morning of a new day in the presence of God. Despite all its power to terrify and bring us into bondage, death for the Christian whose faith is firmly fixed on Christ is but a sleep. It is, says Paul, a matter of the ship releasing its moorings, 'departing' from where our souls have been anchored in this world (Phil. 1:23), entering into the endless sea of Christ's nearer presence. 
How then does the Christian view death? He learns to see it in its proper perspective. He does not lightly and superficially dismiss it. Nor does he allow his life to be paralysed by the fear of it. He recognises that death is an enemy, but he rejoices in the assurance that not even death can separate him from the love of Christ (Rom. 8:38)... and although it may touch him, it cannot harm him.
Both Chelsa and I feel fairly confident that our Grandmothers are with Jesus now, but we still miss them. There are still those conversations left unsaid where we wish that we had asked more about the deep parts of their lives, their relationships with Jesus, and what they anticipate will come next. It leaves us to wrestle with how and when and whether to have those conversations with the people we love who are still here. It still leaves us with questions of when death will come, why we must go through suffering, and how to best hold on to the memories of people we loved so much without dwelling in the sadness of their absence.
The great issues of our relationship with Jesus cannot wait until the angel of death approaches. For men usually die as they have lived. What we need to understand is that the habit of living at a low level devotion to our Lord IS a habit. It is neither easily broken at will, nor can its effects be readily repaired. Preparation for the last day of Christian experience really begins on its first day. 
Sincair Ferguson seems to have a knack for that sweet spot of where the theoretical / conceptual parts of theology really meet the practical -- where the rubber meets the road. He gives us some practical habits, if you will, to consider...
  • We must set our hearts on Christ and the glory of his presence.
  • We must remember the many blessings of the world to come. 
  •  We must learn to live now in the knowledge that this world is temporal.
Life has felt very heavy for the past few months... heck, the past few years. I believe that the Lord prepared Chelsa and I for all of this however... while we have felt worn down, sad, angry, a mess, and more... we have never felt despairing or alone. We know that Jesus is available to us, to listen, that He's sees us, that He is speaking to us through his Word (the Bible) and his People.. though I would love to just have him come down for a beer with me and speak a little more audibly and directly to my questions, that's just not typically how he operates.

There are SOOO many people that love Chelsa and I. If you're reading this, you're likely one of them. It has meant so much to us to be loved so well, to have people reach out with words of encouragement, food, money, friendship, cat-sitting, and lots of prayers. We also recognize that many people who love us are still pretty unsure of their faith, disagree with our beliefs, or are mad at God and have outright rejected him. I hope that all this writing I did today is not just therapeutic for me and a little bit of an update regarding what's going on with us (a more fact-based update is coming soon--I promise), but that it will also serve as an invitation to talk for any of our loved ones who want to know more about the source of our hope and assurance. I'll close with this quote from Sincair's book that I took much of this from (The Christian Life):
"God is not confused by his own plans, purposes and manner of working, and into his hands we may confidently commit our spirits."

Our grandma's and their obituaries:


  
Grandma Wojo with Grandma Sowa
Grandma Beard