There’s an overwhelming theme in my day-to-day life, and it didn’t just start during my cancer journey. Patience has always been really really hard for me. I think parenthood was the first time I was forced to make progress in this area, and each phase the kids have moved into, I’ve have had to grow a little more patient. But during this health crisis I’ve fought patience and resigned with patience over and over again: on getting the diagnosis, getting the appointments and results in a timely manner, waiting in waiting rooms, waiting for my hair to grow back, waiting to be reunited with our kids, waiting on insurance approval, etc. Unfortunately, there are many many examples.

Right now with my Graft vs Host Disease I feel like I’ve backtracked and now I’m not-so-patiently waiting for my donor stem cells to stop attacking my eyes and lungs.
I guess the GVHD blindsiding me didn’t help. I was on my way to feeling stronger and more like my self when my significant shortness of breath started and my dry eyes took a steady decline of blurriness, scratchiness, stinging, pain – not able to keep my eyes open.
So, currently my eye treatment includes steroid shots inside the lower lids, restasis drops, steroid drops, lubricating drops and ointments, flaxseed oil. It’s a day-long rotation that sometimes allows me to keep my eyes open, but often there’s no choice but to close my eyes and distract the discomfort with warm or cold compresses. I will see my ophthmalogist this week to reevaluate where I’m at.

For my lungs, I’ve started on continuous oxygen at home and in the car. It helps my lungs to not work so hard. The smallest things get me out of breath and require me to catch my breath – this is really a patience tester, and sometimes causes panic. Often times I get up and quickly move to do something, when I am quickly reminded that I’m unable to do my normal activities. So either I do nothing or I do tiny steps of one simple activity. We are also continuing the photopheresis 4x/month, infusions of IVIG, and Rituxan immunotherapy, inhalers, nebulizers, lung medicine, immunosuppressant meds and steroids, and due to me already catching 2 colds that have set my recovery back, I take 3 antibiotics, an antiviral and a crazy-expensive antifungal that’s $5000. Thank goodness Vanderbilt has worked with us so that they charge the cost and then let me reimburse them when the insurance company pays me back. Lots of hoops to jump through.
So you can see for the impatient person, these last few years have been an obstacle course of patience-testers. And I do get discouraged sometimes. I know that that is okay and that is understandable, but it’s not fun to stay in that state of mind for too long.

So, I try to think of the many things I DO have. Like I’m living in my house, with my family, in my cozy bed. I get to hang out with the kids with a few germ-related rules, and spend time with my husband. Our parents are still on call and are so helpful. And my neighbors have surprised us with an occasional meal – which I was sure I had surpassed the alotted amount. 🙂

My stem cell doctor is very positive about my eventual recovery BUT it will require me being PATIENT. It is going to probably be a 1-year process and maybe more.
So, I’ll be home most of the time (except my 2-4 hospital visits per week), resting a lot, doing little projects as tolerated and watching tv or reading as my eyes start to improve. My parents have been wonderful house cleaners, errand runners, and stand-in parents for our kids. And of course Jonathan does a ton, but he is also running his (4-year-old! Happy Anniversary) business – and doing great! openskyideas.com

It’s taken a while to get back on here. I’ve just been tired and busy with summer happenings. It was truly a wonderful summer. We enjoyed lots of family time including a trip to Disney World and Colorado/Utah. Jonathan was my hero driving the kids to our destinations and allowing me to fly. It helped to preserve my energy and in a lot of ways my sanity. 🙂 If you’ve driven very long distances you know how everyone can get restless and a little agitated.

I’m so thankful that I was healthy enough to walk all over the Magic Kingdom and take hikes in the Colorado mountains. I had a mild cough on our trip, but it didn’t really interfere with our plans. Recently that changed.

You can say I’m frustrated. Graft vs Host Disease is always a possibility when you receive a donor stem cell transplant. In some ways a mild amount can be perceived as good because it shows that the donor’s immunity cells are seeking out foreign bodies, i.e. lymphoma, and destroying them. However, it isn’t good when it seeks out organs and begins to attack them.

I have had mild GVHD of my liver for many months, but this summer it began to attack my mouth. GVHD makes your mouth extremely sensitive, causes blisters, and for me some gum loss. Thankfully with medication for both specific regions and a general prescription to decrease my immunity, they have responded quite well.

The more troubling GVHD that I have had is of my eyes and lungs. My eyes have been extremely irritated, dry, uncomfortable with some blurriness. Sometimes my only option has been to close my eyes for relief, and unfortunately that hasn’t worked on occasion. So, I’ve experienced a little bit of anxiety-filled restlessness when nothing relieves the discomfort. I have a great eye doctor who has been trying some new ointments and drops to hopefully allay some of these symptoms with time – I’ll see her this week to follow up.

My lungs have been more alarming in their decline. As I said above, I was able to walk all day at Disney World, hike a good distance in Colorado, enjoy walks around our large neighborhood and help the girls with tennis training. But, on the tennis courts I had some frightful moments when I could not catch my breath. I was doing pretty basic, non-vigorous tennis coaching with our girls when I could not get a good, deep breath. I finally knew I had to see the doctor when I spent our son’s entire birthday party short of breath. It can and still does cause a panicky feeling when I can’t seem to take a full breath – all I get are rapid, shallow breaths.

I’ve seen my stem cell doctor and a pulmonologist about my symptoms and we’ve added all sorts of lung-specific prescriptions, nebulizer treatments, inhalers and general immune-reducing meds. Even with all of that, my pulmonary function tests have not improved. My pulmoologist is doubtful I can recover 100% to my pre-GVHD lung function (which was excellent). I have now started on Photopheresis treatments to try and calm my immune system down, so that it will stop attacking my lungs.

Photopheresis is a pretty amazing process. It will most likely be a year-long treatment with diminishing frequency. I completed two sessions last week and there will be two treatments weekly for now. The treatment involves taking 1.5 liters of my blood, separating it out by components – we set aside the T-Cells (white blood cells that attack), then add medicine to the T-Cells, shine UV light on them to activate the medicine, which kills the T-cells and when returned to my body will help shut down the over-activity of other T-Cells.

So, that’s where I’m at. I ask for prayers to help me to be patient, appreciate how otherwise how healthy I am, and for the Photopheresis and other prescriptions to be effective. I may not be able to get back to my original baseline, but I pray there is improvement and not any worsening of my eyes, lungs, liver and mouth.

It’s taken me a little while to update my blog. Partially because I’m tired and frustrated and because I’m not so sure how clear my explanation explains what’s going on. I may be slower right now and I have to rest after the most basic activities, but I do praise God for grace and healing over the last few years. Maybe he just wants to show faithfulness one more time to me. I just need to sit back and trust in Him.

We are breathing easy. There have been few, maybe no, times that we’ve been able to walk away from a scan or biopsy and feel completely free. Thankfully, after a few hiccups, I can say we are exhaling like never before. And we are so thankful.

Last time I wrote, I explained that there was a suspicious lymph node. It had to be MRIed to get a better look. The better look simply agreed with the CT that there was a funky looking large nodule/lymph node that needs to be biopsied to rule out a malignancy.

My trusted doctor at MDAnderson recommended I get a PET scan before going for a biopsy. The biopsy would be complicated and needed CT guidance to find the nodule lying inbetween my esophagus and cervical vertebrae.

My doctor here agreed that a PET scan would be a good next step. PET scans show if there is any unusually high activity with the injection of radioactive glucose. Lots of uptake in a certain area can indicate a tumor growing. (This is my layman’s understanding). Anyway, the PET was performed and 5 days later I received the news that all was clear – the nodule was no longer there! Head to toe, CLEAR!!!

My surgical biopsy could be cancelled, AND we could look at 12-14 months post stem cell transplant with a CT, MRI and PET showing zero cancer. Wow! What a relief!

Once again, we are praising God for giving us strength, peace of mind, and the blessing of renewed health.

Summer is here, and the Scheeles will be celebrating for sure!

I just got off the phone a few minutes ago with my Vanderbilt Stem Cell MD. He let me know that my CT scans are clear of lymphoma. He was very congratulatory and I am trying to let that sink in.

The radiologist did see a dead lymph node in my neck that will need re-scanning, but it is NOT lymphoma.  Most likely it is related to a terrible cold that I’ve had for weeks. We will re-scan after I am well. Again, my doctor stressed that congratulations are in order.

Thank you for your prayers! One year is a wonderful milestone! We will praise God for His healing!

Hello Everyone. Time is marching on and my one-year check-up is being scheduled. March 10th will be a big day of testing my health status (because we are reaching the one-year anniversary of receiving my donor stem cells). This also means possibly getting to find out who my donor is. So, lots of exciting moments are shaping up.

As of yet, I have sent in an anonymous hand-written note to my donor, and my parents have sent an anonymous email to the donor via MD Anderson. Our thanks is long overdue, and we are hoping that through this communication, the donor will be willing to disclose who she is. It is so exciting to wonder who this woman may be.

On March 10th I will have a full day starting with an early pulmonary function test, then labs will be drawn, then vaccinations will be given, then I will see my SCT nurse practitioner and physician, then I have the dreaded bone marrow biopsy, followed by my pentamidine inhalation to prevent pneumonia, then my all-telling lymphoma CT scan followed by a (by-this-time-especially-needed) transplant psych followup. 🙂

Share each other’s burdens, and in this way obey the law of Christ. Galatians 6:2

Please be in prayer that these one-year tests are completed flawlessly and that the results are something we can celebrate. Clear tests at one year are a HUGE indicator of a good future prognosis.

In April I hope to have my forever-pending eye surgery to remove scar tissue related to my radiation therapy. My surgeon (whom I’m very impressed with) will try to remove my scar and reconnect the healthy tube allowing my eye tears to drain naturally. It’ll be a long procedure, but she feels it would be the very best for my quality of life if we can resolve the issue without tubes, but instead restore my “native” plumbing. This will also include an MRI since this is near the area where my disease began.

Thank you again for all of your love and support. I know things have gotten a little quiet on both sides, and I’m thankful that that is only for good reasons. Life is busy and I’m able to engage in it! I’ll be sure to keep you posted as next month’s results come in. Thank you all for blessing me, and I pray you feel God’s little and not-so-little blessings every day.

All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. 2 Corinthians 1:3-4

So, I finally started writing a new post 10 days ago, but sputtered out and never got it out. I’m finally completing it this morning. Here it is:

Happy New Year! I’m happy to be moving into a fresh year of (hopefully) a lot of unexciting

medical news – normal and fine would be just wonderful, and so far that’s what I have encountered.

I’ve been slow to get back on here. In fact, I think it’s been close to 4 months. Unbelievable how time really flies by. Sometimes I think I have something to say and other times I think there isn’t anything interesting going on here. And then my mind can’t decide and I plop back down into bed – I’ll figure out if I have any words another day. . .

That’s probably not a totally inaccurate summary of the last 4 months. In fact, transplant

patients have a psych consult post-transplant, and my follow-up with the practitioner was yesterday. Before I left her, I asked her a question, “If I often want to stay in my pajamas and hang out in bed, is that normal?” (Some people I’d be really embarrassed to say that to, but she’s been doing (and loving) her job forever and is accessible 24/7.) She said it is absolutely normal after a transplant – and especially after 2 SCTs pretty much back-to-back. That took a weighty guilt off of me. Obviously, I don’t have the option to do that all of the time because I have responsibilities that I feel only I can do – and there are many times I feel almost normal.  I’m at 10 months post-transplant and she said give yourself 2-3 years and let others know this is how it goes.

I feel like I’m surrounded by a big team that keeps me upright and on the right path. I see a

Christian counselor who helps me talk through things and incorporates my faith, I’ll see my stem cell doctor at Vanderbilt tomorrow and get labs and a pneumonia-preventing breathing treatment, possibly some vaccines as well, I consider my hair dresser a part of my team (she’s good at naturopathic advice and taming my hair), then there’s the upcoming GYN, dermatologist and ophthalmologist facial plastic surgeon . . .  Maybe I just figured out why I’m tired. 🙂

Well, since our positive 6-month visit to MD Anderson, we’ve kept busy with kid stuff and holidays (and the appointments listed above).  Our oldest had a great first season on her middle school tennis team, at Halloween we had Spider-Man, a mime and Thing 1 out and about in our neighborhood to trick-or-treat, in November our first baby became a teenager!!!, we had the most delicious Thanksgiving ever at my parents’ house, in December Jonathan and I celebrated our 18th year of marriage with a nice dinner out

(while our new teenager babysat – all sorts of firsts!), we had a beautiful Christmas here at home (although it was the first time I remember having to run the a/c because it was so warm), we had our traditional Swedish Christmas Eve dinner and a traditional English dinner on Christmas Day, then Jonathan took the kids to visit his parents and brother’s family in Ohio, they returned for New Year’s Eve and we thankfully and cheerfully rang in the new year!

That sounds like quite a bit, and I’m positive I’m missing some big things.  Along the way the girls have attended middle school, our baby is in pre-K at a church preschool and I attend my many check-ups. My next scans will be at my 1-year anniversary in March, and thankfully I’ve had only minor concerns the last few months.  We still treat my skin and

liver for graft-versus-host disease, but they are very minor and steroid ointment, prednisone and other Rxes have kept it at bay.

My immune system continues to be suppressed, so I’m always on the kids to wash their hands and we try to avoid being around obviously sick people. The suppression is to prevent my new stem cells from attacking my organs. It looks like the timeline for suppression will be a long time out. That’s just part of my 20 prescriptions. Now that I think about it, I’m probably more likely to die from choking on my pills than dying from cancer. Weird humor I know, but that’s how we do it around here to get a few laughs in. And we have quite a few laughs in this house!

We are so happy to be home, and this time is looks like staying here may be indefinite. At the airport yesterday, we saw this banner right next to our boarding gate. How perfect. Jonathan convinced me to stand by it for a “quick” picture.  I always feel goofy doing that – you know how people have to wait to the side, etc. – but I told myself I’ve earned this, who cares.  🙂

As you know, I had clear scans of my entire body on Monday. My radiation oncologist (who’s been my 100% advocate through all of this) was very encouraging, and my stem cell doctor said I could return to Vanderbilt for my continued care. I never dreamed I could possibly let go that quickly. Thankfully, he’s very confident in his colleague that works at VUMC and knows he is very capable to watch me from here.  What a lightening of our spirit that we never expected.

My eye surgeon also recommended I have my eye surgery at VUMC, so that they can regularly follow me. As well, as my dermatologist says VUMC has a great academic dermatology group see for my follow-ups. One-by-one, each visit felt like the invisible oppression was lifting.

So now we are home. I’m told to stop all of the self-exams and wondering and just “trust the process” now. Both MDA and VUMC have timetables and tests that we will follow. From what I interpret, making it to 6 months with undetectable lymphoma is very encouraging considering the very aggressive nature of my disease. I feel so so blessed to have had the aggressive treatment that I had. It really could have gone down a completely different path. I’m not saying I’ve been deemed cured, but it feels like it could be possible down the road.

So, now we continue trusting God, following the MD’s guidelines – I have to treat some Graft Versus Host Disease for my skin and liver, my immune system is still being suppressed so there are many rules for avoiding infection, and my eye will still need the minor surgery.  All of those things are doable and I’ll take it a day-at-a-time.

Thank you for your prayers! In general, please pray for cancer research and its cure – it’s a horrid disease. As you walk through MDA you see all ages, races, socioeconomic classes, and countries represented, etc. Most have been completely blind-sided with their diagnosis. Some are positive and inspirational, and others appear hopeless and faithless.

Please continue to pray for our family as well. We will continue to put our trust in Jesus.

We are back in Houston – unbelievable how quickly three months goes by! I will have appointments every day this week to see MDs, have testing and a small eye surgery.

Thank you for all of the support you’ve given me the last few months. The texts, cards, food etc have been a great blessing and an encouragement as we try to patiently endure. Would you please pray for the following things this week?

Monday: good results from lab tests, clear lymphoma and brain CT scan, positive visit with my radiation oncologist and with my stem cell doctor also

Tuesday: good results from eye test, visit with ophthalmologist confirms go ahead with eye surgery to fix scarring from radiation, good results on lung tests, attending my survivorship class (maybe loosen some of my restrictions?)

Wednesday- another CT, good results from bone density test

Thursday- good pre-op and anesthesia consultations, a helpful dermatology appointment

Friday- successful and safe eye surgery

Saturday- safe travel home! Fun reunion back home with our babies!

p.s. I’ll post CT results as soon as we know.

That’s one of my big goals. I would prefer to be that way than feel slightly (sometimes more) crazy all of the time.

I’ve been home just short of 2 months now! Amazing how the weeks fly by. I’m so thankful to be in remission, to be home and to provide a little stability for our family. In a lot of ways I feel good – very little nausea/vomiting, very few headaches, a little increase in energy, I’m able to do a little bit around the house or with the kids as long as I can rest pretty often.

One of my challenges is feeling like a jittery mess. I have near-constant tremors (which makes my eye makeup interesting at times). The tremors are almost like an outward sign of the jitteriness I feel inside. My medication that prevents graft-versus-host disease causes me to shake, and this will continue probably 1-4 more months. The constant movement seems to also make gaining weight very hard. You’d think weight loss would be awesome, but not when it takes your muscle, makes you look frail and ages your skin. Stamina is also something that Jonathan and I struggle with. 2 years of doctors’ appointments, treatments and emotional roller coasters has really done a number on our patience and my ability to not just stare off in the distance. 🙂 I’m sure you can imagine the impact.

Yes, I’m complaining. Then I have to remember that I’m one on the survivors that has been in remission 2 times – not everyone gets that opportunity. If this disease stays away, I can actually be deemed cured in 2 1/2 years. So, every day we have to choose not to be anxious and choose to trust God. Which can be really hard! Prayer and reading the Bible really help with that.

Since being home, we’ve tried to make the most with our family. I have a lot of limitations with germs, even lawn clippings, dust/vacuum dust in the air etc. We’ve celebrated our 11-year-old’s and 5-year old’s birthdays a couple of weeks ago, gotten our girls ready for middle school, we replaced my 12-year-old SUV, and took an extended “test drive” with the new car to Colorado. We are trying to be a little more spontaneous and seize the day (as my wonderful counselor highly suggests). Yes, it was tiring – and no, I couldn’t hike or enjoy horseback riding, BUT I did enjoy the very best massage I’ve ever had compliments of one of our first Colorado friends we met when we lived there – she did a lot to make our ranch/resort stay special.

I’ve been seeing doctors here for follow-ups. I’ve been very impressed by the stem cell transplant team at Vanderbilt. They have managed my many medications, monitored my labs, scheduled breathing treatments, examined my eyes – we have to monitor graft-versus-host disease carefully (my donor cells attacking any part of my body).

Late September, Jonathan and I will return to Houston for my 6-month-post- transplant check-up. I have a few doctors’ appointments, scans and outpatient eye surgery to help me with my radiation-scarred tear ducts, so that tears don’t continuously roll down my cheek – Pyrex tubes are the answer – amazing!

I’m sure there’s much more. So much of it is hard to put into words. Please continue to pray for us. We need to release the worry and hand it over to God, embrace each day and be thankful for our many many blessings.