Posted by: Angie Lomas | December 17, 2012

When in doubt, go to thatangiegirl.com

So, here’s the deal. When Brian and I started seriously dating, I thought it would be cool to have website together. Which..it is. The problem is that I already had a blog that I used to update people on my life, which means there are two blogs I have to update things on. So….when in doubt, go to thatangiegirl.com for the most recent updates. I try to post Brian’s health updates on here, but sometimes that just doesn’t happen because I only have time to update one blog or I forget to post things on here. SO…as much as I will try to update things on this blog, your best bet is to visit thatangiegirl.com for updates. Every post that is found on here was first posted on thatangiegirl.com, so you won’t feel like you’re missing anything if you only look at that site.

Now you know. 🙂

Posted by: Angie Lomas | October 12, 2012

Chemo G.N.

It’s official. We started a new chemo yesterday.

   

Our day started off by getting a phone call from the KU doctors asking if we could come in earlier than noon so we had more time to discuss our treatment options. So, we both left work around 10 and got there a little before 11. We had to wait for a while, but the wait wasnt’ too bad. I was actually pumped up and ready to duke it out if we had to. I felt strengthened, encouraged and maybe even a bit joyful. No doubt, thanks to your prayers.

Our favorite KU Doctor, Dr. Abyankar, came in with Ellen, the transplant coordinator. We love Ellen, she’s the sweetest lady ever, but we never like seeing her in our exam room. 🙂 Just like the doctors had told Brian the day before on the phone, they were not thrilled that we did not have a follow-up plan in place and therefore, they were really encouraging us to do a 3rd transplant. I understand their intent…their thinking is that this may be one of the last chances we’ve got to really knock down the cancer, so it may be one of our last window’s of opportunity to go into a transplant with a small amount of cancer. I understand that a transplant is really the only “curative” option out there, although the chances of it work and actually curing are about 5-15% compared to a 50% chance of it killing you. The doctor says there is about a 35% mortality rate within the first year of a transplant. I supposed 1 out of 3 is a decent ratio for us, at this point.

We did not decide to do a transplant, but we did say we’d be willing to let Ellen do an extensive search of a donor just so we know what kind of match we’re looking at if we ever changed our minds. Brian’s bone marrow make up is more complex than a lot of other people’s because he has mexican and indian mixed into his blood, and those demographics (especially indian) are very under represented in the donor bank. So, it is hard to find a great match.

We had been told at our last appointment with Dr. Ganguly that a DLI (Donor Lymphocyte Infusion) would still be an option, even though 3 is typically the most they ever do. This is where they would take more cells from his donor (Brian’s sister) and infuse them into his body, in hopes that it would rev-up his immune system and start attacking the cancer. We were really in favor of this idea as a follow up. But, in typically KU fashion, when we mentioned this to Dr. Abyankar, he said “no, we’ve already given you 3 doses and it hasn’t worked. plus your body has already built up plenty of it’s own cells, what would another DLI do?” So, I suppose that isn’t an option after all. Sure wish they’d get their stories straight.

We’ve been researching a lot and have found a type of chemo that was studied back in the late 90’s that they used to use for relapsed hogkins. It is called Interferon. When we mentioned it a few appointment back with Dr. McGuirk, he said “you dont want to mess with that, its a chemo.” But when we mentioned it to Dr. Abyankar, he wasn’t opposed to it. Supposedly, interferon (or something within it) is something we actually have within our bodies. This “drug” is actually just higher amounts of it, and therefore would possibly aggravate the immune system and cause it to start fighting and produce some graft vs. host effect. This could be a really good thing, as it means it could start attacking the cancer, too…in theory. But, as with anything…we shall see. The next doctor we see may put a stop to that idea.

A few of the doctors had met the night before we came in on Thursday and decided that GN would be okay to start, as long as they didn’t give him the “D” part of the chemo, as his echo showed that his heart was just below “normal” strength/pumping levels. Normal is between 55-65, and Brian’s was around 50. There is also a “lifetime maximum” that a person can get of the Doxil, and Brian is already close to that, as it is also apart of the ABVD chemo (i think) that he did when he first got diagnosed. So no “D”…but that is okay, I suppose. It is a VERY hard drug and can cause a lot of damage.

The “GN” drugs still have their side effects, but not as severe as the D. A few of the common side effects are fatigue, nausea/vomiting, low blood counts, poor appetite, constipation and muscle weakness. A few of the less common side effects (<30% of patients) are neuropathy, hair loss, difficulty sleeping, mouth sores, shortness of breath and low-platelets (risk of bleeding).

After we talked to the doctor and transplant coordinator, I asked if we could go get something for lunch while they prepared chemo. They said yes, so we went to Houlihan’s which is one of only 3 places to eat right near the Cancer Center (Hen House, First Watch, and Houlihan’s….looks like we may be spending a lot of time at those places..haha). We had a delicious lunch and talked about treatment options a bit more. We talked about transplants, about KU constantly trying to get us to do a transplant, but the sober reality that we really should at least consider it…as it is the only “scientific” curative treatment option. I say “scientifically” a lot, because we know that God can do anything and it doesn’t have to line up with science.

After we got back from lunch, we got right into a treatment room they were holding for us, and they got the process going. It didn’t take long for the pre-meds (anti-nausea) to finish, and then about 30 minutes for the “G” drug, and about 20 minutes for the “N” drug. Then we were out of there!

Brian handled the drugs well, he just slept the whole time. As soon as he was unhooked from the toxic-pipeline, we headed out. Of course, we had to stop and get a Frosty on the way home. 🙂

Brian has handled the drugs pretty well, so far. A bit of nausea, but besides that, he is doing okay today. We’re praying that the drugs work fast and bring some relief of the itching, as well as completely rid his body of cancer.

How can you pray?

  • Pray that we will be able to discern which follow-up treatment is best
  • Pray that God would continue to strengthen us and bring us joy in the midst of trial
  • Pray that the side effects would be minimal
  • Pray that Brian would get relief from his itching soon
  • Pray that God would choose to heal Brian on this side of heaven
  • Pray that we would remain in the moment and not get caught up in the “what ifs”
  • And pray that through all of this, we would be drawn to the Father and to each other like never before.
Posted by: Angie Lomas | October 11, 2012

Quick Update

For those of you who don’t see my facebook posts, I thought I’d update you on the happenings of the last 24 hours. (By the way, most of my “up to the minute” posts are on facebook). Yesterday morning Dr. Abyankar (a KU doctor) called Brian to let him know that they got his results back from his ECHO (I thought it was an EKG? I don’t know the difference..). Something came back “low” on his heart test, so they do not want to do the GND chemo we had been planning on starting today, because the “D” drug (doxorubicin) is really strong on the heart. Dr. Bartlett (from St. Louis) had told us that you could easily do GN by itself, and while it wouldn’t be quite as effective, it would still get the job done to some degree. The KU doctors didn’t seem to jump on that idea (do you notice a trend of not collaborating well?).

Dr. Abyankar proceeded to suggest that we do a chemo called RICE, which is just as strong, but doesn’t affect the heart like GND. But their MAIN concern is that we are jumping into a chemo treatment without having a “follow-up” plan in place. Usually most of these chemo drugs we are looking at are used as a “bridge” into a stronger treatment (a transplant) or some sort of maintenance regime. Scientifically, the thought is that no chemo will bring a cure, so whether or not any of these drugs put Brian into a remission, that remission would just be temporary. Again, scientifically speaking. We know God can do anything. So, the idea is that while its great and dandy to knock down or completely eliminate the cancer, we’ve got to have another plan in place to follow that up so that we “Keep it at bay” or keep it maintained to a small amount. They are not comfortable with us doing anything until we have a follow-up plan in place. Which, gets tricky when there are only a handful of options left, none of which are so-called “maintenance” drugs (meaning you can stay on them for long periods of time) and we are not considering a 3rd transplant at this time since every other doctor we’ve spoken to besides KU would NEVER recommend a 3rd transplant because it is so risky. No matter how much KU pushes for a 3rd transplant, we will not do it unless we feel it is our absolute best option. And that would take a lot of convincing, considering the cure rate is only 5-15% and the chance of it killing you is 60-70%. Needless to say, a 3rd transplant is not on our radar at this time.

So, now we’re somewhat at “square one” in terms of getting treatment. We still have our appointment set today at noon, but rather than getting right in and getting chemo going, we will have to duke it out with the doctos and hope that we can all come to an agreement on what chemo to do now, and what to do as a follow-up option.

Dr. Bartlett’s nurse (from St. Louis) also called Brian yesterday to see what decisions we had made, following our appointment with her last week. (Have we mentioned that we are very impressed by Dr. Bartlett and her team?) Brian mentioned all of the things that had come up, and the nurse suggested that if the doctors wouldn’t cooperate, we could probably come over to St. Louis to just do the GN portion of chemo that we had planned to do. So that is a possible option if KU is being difficult. Obviously not a top option, as we wouldn’t prefer traveling over there every other week, but at least it’s an option!

So that is where we are at today.

Last night our church family gathered around us to pray for us at our KCI regional campus before Wednesday night activities began. It was so encouraging, humbling and I feel like it strengthened us to keep going. We were spoken so many words of blessing, encouragement and powerful prayers. One guy reminded us that when Jesus healed a crippled man in the Bible, it was the faith of the men who lowered him down through the roof that healed him. He said that when we feel like we need to “borrow” other people’s faith, that they would be there believing for us. Another guy reminded us that Jesus healed Brian 2,000 years ago when He died for us. That he not only died for our sins, but our iniquities as well. And our campus pastor reminded us that there is only one person who can PROMISE us healing, and that is Jesus himself. It was a very encouraging time. People even wrote us notes and prayers that we can read when times get tough. We haven’t had a chance to read them all, yet, but it is encouraging to know that so many people are praying for us. And for that, we are extremely grateful.

I am ready, now more than ever, to keep kicking cancer in the nuts.

Let’s do this thing.

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UPDATE: The doctor just called Brian to see if we could come in earlier..like before 10 a.m. So that means I’ll be heading out of here soon. I’ll keep you posted.

Posted by: Angie Lomas | October 8, 2012

Oh God, I need you now.

As I was driving Brian to our appointment, this song came on the radio. I’ve never heard it before, perhaps just haven’t noticed it before….but it seemed to say exactly what was on my heart. “How many times have you heard me cry out “God please take this”? How many times have you given me strength to just keep breathing? OH! I NEED You! God, I NEED You NOW!” 

As we got down the road a ways, I looked over and Brian was totally asleep. He can sleep at the drop of a hat, these days. Which, I suppose is a good thing, considering usually fatigue is also paired with the inability to actually sleep. I’m thankful for the rest he is able to get. But some days it makes the loneliness loom over me like a dark cloud, threatening to overtake me. I feel alone and scared a lot these days. I feel helpless and overwhelmed and at a loss for what to do. Why did God chose me to be Brian’s caregiver? He deserves SO much better.

We waited for over an hour to talk to a doctor today. Brian slept most of the time we waited. I just prayed and prayed. And sat numb. Stared at the floor. Stared at the ceiling. Tried to use telepathy to get a doctor to walk through the door sooner than later. Nearly fell asleep from boredom, from silence, from the numbness of it all. Dr. Ganguly was the doc of the day. You never know who you’re going to get until they walk into the door. A downside of being treated by a team of doctors rather than one primary doctor.

After sharing with Dr. Ganguly what we learned from Dr. Bartlett in St. Louis, and that we both felt that we wanted to do GND as our next treatment, he began to push back by asking what we thought we’d use for treatment after that. GND is typically a “bridge treatment” meaning you’re using it to either go into a transplant or some other follow-up regime. I’m not sure what he expected us to say, since he knows that there really is nothing out there as a maintenance drug. He suggested he talk with his team (which meets on Mondays, meaning it would push everything back for at least another week) and then get back to us with their suggestions. That’s one thing that really ticks me off about KU Med (or perhaps it happens everywhere)…if they knew we were meeting with them today, why didn’t they come up with a plan of action BEFORE our appointment? I was adamant that we wanted to start something soon because Brian’s itching is getting out of control.

He was lucky that he got an emergency phone call that caused him to leave the room. He may not have withstood my glares. I had a minor vent session with Brian while Dr. Ganguly was out of the room. Why wouldn’t they be ready with a plan of action already? Why do they always delay things and push things back? Don’t they understand these things are urgent? Don’t they understand we’re already at a miserable point?

I’m not sure what changed his mind while he was out of the room, but he came back and said “So we’ll get an EKG to make sure your heart is strong enough and then get either GND or Bendamustine lined up to start soon.” Bendamustine is also a chemo drug that we had asked Dr. McGuirk about the last time we were at KU Med. Dr. McGuirk was supposed to be looking into some studies regarding the drug and letting us know if he thought they could get it in, since it is not approved for Hogkin’s use yet. I doubt he’s researched it. Dr. Ganguly will be talking with McGuirk about Bendamustine, will wait to see the results from Brian’s EKG, and then they’ll decide which chemo he will get.

Dr. Ganguly began talking about lining everything up with a possible start of chemo next Monday. After he finished talking, I said “Is Monday the soonest we can do it?” He said no. So like a cat on a mouse, I said “we’ll make it work to do it as soon as possible.” So, he said we could get it started on Thursday of this week. That’s more like it, people.

Brian’s EKG will be tomorrow at 1. Then we will start one of the chemo options at noon on Thursday. It will be an IV chemo. Both chemos have their own sets of side effects, but they are both harder than the last IV chemo he did. They probably won’t be quite as harsh as some of the first-line treatments he had when he was first diagnosed. There’s a chance he could lose his hair, lots of fatigue, nausea, etc. Everyone reacts differently, but those are some of the side effects we have to prepare for.

The GND stands for Gemcitabine, Vinorelbine, Doxorubicin. The Doxorubicin is what can be very hard on a person’s heart. There’s always a possibility that we would just get GN rather than GND.

So that’s what we know for now.

How are we doing? That’s a tough question. I’d say I’m feeling pretty overwhelmed. I can usually tell if I’m overwhelmed if I get really tired after an appointment and just want to crawl under the covers and sleep. I suppose it’s a way my body tries to hide from the fear, pain, anxiety, decisions, etc. After we grabbed dinner on our way home and ate, I fell right to sleep. Brian jumped in the shower to scauld his skin to get temporary relief from the itching and then he jumped into bed as well. He’s been sleeping ever since (5:30pm). I woke up around 7:30 and got up and did some work from home to make up some hours. I’ve been trying not to think about things very much.

Upcoming chemo treatments always have me a bit anxious. There’s the nerves of the actual administering process and the rare “what if’s” that could come with that. But the majority of my anxiety comes from the fear of what comes next. The side effects. Will he lose his hair? If he does, I may just lose every ounce of my sanity and emotional strength. There’s just something about having hair that equates healthy or sick in my head. Will he be extremely exhausted and I’ll need to increase my care even more? I feel like I already suck, how much more can I suck? Will he get sick and be throwing up? How do I care for him? What if I’m not patient enough with him? What if something bad happens?

And let’s not forget that we have the joy of moving in 11 days. Don’t get me wrong, I’m excited to actually be in a rental house, but not really excited about the move itself. Of course, with extra activities comes the stress that somehow Brian will get completely worn down and sick throughout the process. I think we’ll have enough people lined up to help, but I’ve got to get this place all packed up and ready to go before then. It’s like a repeat of last year all over again…chemo starting, moving and packing in every spare moment I’ve got, most weeknights filled with some sort of commitment. Oh Jesus, help us. Oh Starbucks, do you have a benevolence ministry? I think this is going to require more Bible and more espresso.

I’m listening to Christmas music right now to keep me calm. I know, I know…I’m breaking my own rule of not listening to Christmas music before Thanksgiving. But it’s been really helpful. Right now “Breath of Heaven” is playing. It’s one of my favorites. Granted, I am not Mary, the mother of Jesus, but these lines are hauntingly accurate to my life right now:

I am waiting in a silent prayer.
I am frightened by the load I bear.
In a world as cold as stone,
Must I walk this path alone?
Be with me now.

Do you wonder as you watch my face,
If a wiser one should have had my place,
But I offer all I am
For the mercy of your plan.
Help me be strong.

Oh God, Be with me now….Help me be strong.

Posted by: Angie Lomas | October 8, 2012

Confessions of a Cancer Fighter’s Wife #3

It’s odd…I was just thinking about this post that I wrote almost exactly a year ago…and how things really haven’t changed much since then. I still have a lot of those same feelings as I did a year ago. Stressed about upcoming treatments. Feeling inadequate as a caregiver and wife. Helpless and clueless as to what I can really do to ease any of Brian’s anxiety or symptoms. Feeling like a burden and added stress that Brian doesn’t need. An upcoming move to a new place. Not knowing exactly what the best decision is regarding which treatment to do next. No one told me I needed to study up on being a good decision maker. It’s one thing to decide if I should wear red or blue…but choosing between toxic drugs? That one wasn’t a problem-solving question on any exam I had.

As I was brushing my teeth last night after a long, hard evening, I was reminding myself what love is all about. I think I’ve heard 1 Corinthians 13 quoted about a million times in my life, but somehow, I’m not sure it’s ever dawned on me that the very first thing love is described as is “patient.” 1 Corinthians 13:4 says “Love is patient.” Man, I don’t think anything else could describe my life better than that. I feel like more patience is required of me than I can even muster up most times. And I’m not just talking about having patience with the medical field and waiting for doctors appointments (although that most definitely applies!). Patience is required of me when speaking with Brian, trying to stay in a calm, relaxed tone…not too rushed, not too hurried. Patience when trying to read Brian’s emotions, attitude or the severeness of his itching at the moment. Patience when I want to just hurry up and get something done, but knowing that I’ve got to remain at a calm, steady pace in fear that I may induce anxiety and escalate the itching. Patience when I want to get on to the next chapter of life, but I’m still in this one. Patience in waiting for discernment or wisdom when a decision has to be made. Patience in wanting to do an activity but knowing that it will probably require too much energy. Patience with Brian as he tears up his skin in an attempt to scratch the itch. My patience-bucket is in a deficit, I think.

I find myself getting angry at the littlest things. My Watts temper is most definitely on the prowl these days. I’ve kicked chairs, shoved boxes, punched pillows and thrown countless objects at the wall. Cancer is stupid. I don’t understand the point of it all.

1 Peter 1:3-9 says “Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead,  and into an inheritance that can never perish, spoil or fade—kept in heaven for you,  who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time.  In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.  Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.”

Somehow, we’re supposed to be happy about these trials because these trials are supposed to prove that our faith is genuine. And because it’s genuine, we’ll receive salvation for our souls. This is where my faith is definitely tested. I can’t SEE how this is good. I can’t FATHOM how enduring these trials will bring glory to Jesus. And I surely don’t understand why these things are needed in order to receive the goal of my faith, which is salvation. I can’t say that I am filled with an inexpressible and glorious joy because of these things.

But, if having to go through these trials in order to test my faith means that someday I will see Jesus face to face, with no more mourning, no more grief, no more itching, no more pain, no more crying, no more agony, no more grueling decisions, no more bleak prognosis, no more cancer, no more fatigue, no more arguments, no more death……then that is glorious, indeed.

Maybe that’s what “living hope” is all about.

Posted by: Angie Lomas | October 7, 2012

St. Louis Recap

It’s after midnight, early on Sunday morning, and I should totally be in bed. But instead, I’ve been up researching treatment options and reading the beginning of 1st Peter. 1st Peter is a great book about hope and going through trials..I’d say it’s very appropriate for this season of life. I am also still awake because I just heard from Brian, who went to Manhattan, KS, with some friends super early this morning to go to the KU/KSU football game. They were going to be staying in a hotel and then coming home tomorrow, but Brian just texted me saying they were on their way home. Apparently there was some sort of electrical fire at the hotel and they decided to just drive the two hours and get home tonight. So…I’ll still be up for quite a while.

I thought I’d post a recap of our St. Louis trip while I’m awake. The trip itself was really fun. We made a lot of memories and had a good time just getting away and exploring another city. We always enjoy doing that as part of our dates.

We took the train from KC to St. Louis, and while it was a fun experience, we probably won’t do it again. Good night, it takes 5.5 hours to get there and they stop at every little town in between! But, at least we can say we did it and we made some memories.

Like I said in my last post, we were blessed to use a friend’s points at the downtown Sheraton Hotel and it was right across the street from the train station, bus stop, and trolley stop! What a God thing! It was so great to be able to walk right across the street, jump on the transportation, and go.

The next morning we took the trolley around downtown and walked around and found a great little coffee shop where we ate breakfast. We walked toward the Arch after that and we ran across a Rams fan party of some sort..they sure are proud of their teams there! Then we went to the Arch and took a tram to the top!

After the Arch, we walked toward the riverside shops and had lunch at The Old Spaghetti Factory and then caught the Metro-Link to head to the hospital.

We got to the hospital around 3pm, since we had to be there around 3:15 for our 4pm appointment. We figured Brian had to have blood drawn, but he didn’t. We waited there for a really long time, but finally around 5 we were able to see Dr. Bartlett and another doctor/fellow that was under her. We were fortunate enough to have nearly an hour to talk to her, which I’ve never before experienced! Usually 20 minutes is the longest a doctor has talked with us at KU. Dr. Bartlett and her team had clearly studied Brian’s case, as they knew almost every detail, including the treatments he had taken. It was very obvious that Dr. Bartlett was a specialist in Hodgkin’s Lymphoma. She was very knowledgable and took the time to listen to all of our questions, concerns, thoughts and ideas. We both wish that she was in Kansas City.

We didn’t leave really knowing much more, although it was encouraging to know that there are still some options to try. Although, we also left discouraged to hear the same thing that every other doctor has told us “there is no cure for it at this point.” There are two clinical trials that Brian is eligible for at St. Louis, although they are only phase 1/2 trials (where they figure out toxicity levels/regimens) and Dr. Bartlett’s agenda is clinical trials in the same way that KU doctors have an agenda of transplants. You always have to take that with a grain of salt, as a doctor will always recommend “their agenda” first. There are a few “standard treatments” still left to try, meaning they are already approved and will always be available.

We are now at the point of deciding which treatment to do. One of the clinical trials at St. Louis would require us going there every week, three out of four weeks in a month. That one is nearly out just because of logistics at this point, although we have not ruled it out. The second trial is the one we considered a few weeks ago and was put on hold, but is now recruiting again. It would require us to go to St. Louis for a few days for testing to verify that Brian is still eligible, and for them to get their own results, and then we would have to go there for the first week of the treatment for monitoring, and then we would have to return once a month for them to dispense the drugs to us. That trial is a combination of two oral drugs, one of which is Revlimid (which he was just on and it didn’t work). So we don’t even know how promising that trial would be. It also means that it would be several weeks (up to a month or two) before all of the testing was done and the treatment could actually start….which means we’d be looking at several weeks or a few months before Brian could get any relief from his severe itching. The standard treatment option we’re considering is GND, which is a moderate-level chemo. We would most likely be able to start that quickly and it would hopefully knock down the cancer a bit and bring relief of the itching a lot quicker. Although, it is always worrisome to use a standard treatment option, because once you’ve used it and the cancer returns, you can’t use it again. Which means you have one less “approved” drug available when worse comes to worse. It also means you risk the chance of those available clinical trials being “closed” once you need it.

So it is very much a catch 22. Use a standard treatment to get faster relief and eliminate an approved option when you may need it later and risk the trials being “closed” or do a clinical trial that may not work anyways and take longer to get started and to get relief, but at least still have those approved drugs in the “arsenal” for later.

There are a few other drugs that offer very small chances of doing anything that we could try if these don’t do anything. There is another standard treatment that Brian hasn’t done, called ICE, but Dr. Bartlett wasn’t fond of using that because it is so harsh and hard to handle, especially at Brian’s point. There is also the possibility of a brand-new phase 1 trial coming out in a few months at St. Louis. Dr. Bartlett told us she wouldn’t consider a 3rd transplant.

So that is where we’re at regarding treatment options. We have an appointment with KU on Monday (unless we push it back later in the week so they have a chance to receive/read Dr. Bartlett’s notes.) So we will have to decide soon. Brian’s itching is out of control, so we HAVE to do something…and quickly!

After our appointment with Dr. Bartlett, we headed back to our hotel and grabbed dinner and ice cream at Union Station really quick. We were really tired from an adventurous day and it was getting dark, so we wanted to get back to the hotel as quickly as possible. We jumped in the hotel hot tub for a few minutes, discussed the appointment briefly and went to bed.

Our train left at 7:15am the next morning, so we got up early to grab some breakfast at the hotel and walked across the street to the station. We got back into KC around 1 yesterday afternoon to discover our dogs had killed a skunk while staying at Brian’s parents house and they STINK! So, they are staying an extra few days out there to air out. 🙂

It was a full, but good trip to St. Louis. Now to make decisions….

How can you pray?

• That Brian would be fully healed of cancer on this side of heaven.
• That Brian’s symptoms would be relieved…even before we start a treatment!
• That we will have wisdom and confidence in choosing the right treatment.
• That we would glorify God in our thoughts and actions during this trial.
• That we would obediently follow God, no matter what path He chooses for us to take.
• That we would have courage, peace, hope, joy and strength.
• That we would have patience with each other as we battle this disease and it’s symptoms.

Posted by: Angie Lomas | October 3, 2012

St. Louis bound

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Today we are headed to St. Louis via the train! We’ve never taken a train before, so I am excited to see what it’s all about. I’ve heard mixed reviews on taking a train, but I guess we will find out soon.

We’re headed to St. Louis so that we can meet with Dr. Nancy Bartlett at Washington University to discuss Brian’s case, and hopefully get a little more direction on how to proceed with treatments. If I haven’t said it before, we are so far down the line of treatments that there are no clear options left. Any option would just be a trial to see how it works against Brian’s cancer. Somewhat discouraging, but at least there are a few drugs out there that we haven’t tried. Like one of our KU doctors reminded us at our last appointment…the fact that Brian is even still around, MUCH LESS able to work and function as a normal human being is a miracle. So for that, we give God the glory. It’s easy to say “well I guess we chose the right path of treatment” or “well at least he’s got age going for him”…but it comes down to the pure fact that God has sustained Brian and has continued to give him life, and for that, we are grateful.

Dr. Bartlett has dedicated her whole career to the study of Hodgkin’s Lymphoma, so while she may not have any more knowledge than our KU doctors about the options that are out there, she may be able to give us a little better guidance as to how to proceed to the next treatment. I am praying for wisdom and discernment as she speaks with us. She will consult with our KU doctors and they will form a plan regarding our next steps for treatment. We have an appointment with the KU doctors on Monday, so we will hopefully get something going as soon as possible.

Watching Brian these last few weeks has been difficult, painful, frustrating, and has left me feeling so helpless. His itching symptom has come back with vengeance and it takes every ounce of brain power for him to remain calm and to avoid itching..but usually the day just ends with him feeling miserable and nearly out of his mind because of the itching. There’s only so much anti-itch cream and anti-inflammatory drugs will do. He’s even on an anti-anxiety/partial itch relief prescription drug to ease the torment of the itching.

No one wants to go through chemo or any type of treatment, but I’d say we’re both actually looking forward to starting something in hopes that it will knock the cancer back down and Brian will have some relief from itching. We also think his thyroid may have been affected while on his last drug, but we’ll have to see what the doctors think.

Anyways…back to St. Louis…..

We have been humbled by so many people’s generosity surrounding this trip. A friend from my previous church gave us points to use for two nights at a hotel in downtown St. Louis (just a block from Union Station..the train stop). And just yesterday several coworkers pooled some money together to pay for our meals while we are away. It’s easy to talk about generosity (which has been a big topic in our church lately), but when you are on the receiving end, it is both humbling and shocking. God is good.

Our appointment with Dr. Bartlett is at 3:15 p.m. on Thursday, so we will have Thursday morning to just chill, hang out, (maybe swim in the hotel pool!?!) and maybe visit an attraction or two…maybe the arch or the art museum.

The reason we’re going to St. Louis isn’t fun, but I’d be lying if I said I wasn’t excited to just get away for a few days. Work and life have been chaotic lately, so to have a day to just “chill” is more than exciting and anticipated.

So, that’s what’s new in our world. Did I mention we’re moving in 2.5 weeks, we’re launching a generosity emphasis at church this weekend that I’ve been creating print pieces about for months, we’re launching a new website this week for our church, we’ll be starting the development of an “app” for our church in the next few weeks and we’ve got several youth group activities planned for this fall?

We’re not busy at all….

So how can you pray?

• That God would choose to heal Brian fully from this awful disease on this side of heaven.

• That God would give us discernment into what treatment would be best for us to choose.

• That we would be courageous and unwavering in our faith as we continue to walk this journey.

• That we would be willing to walk whatever path God has for us to walk, and accept His will no matter what that looks like.

• That God would give us joy on this trip and endurance during this crazy busy season of ours.

• And that we will have a successful move into a new rental house with lots of help and without Brian getting sick afterwards.

Posted by: Angie Lomas | May 19, 2012

Revlimid

Two weeks ago we went to the doctor and discussed treatment options again with the doctor. After that appointment, we decided that we are going to go ahead and try Revlimid. It is primarily used for Multiple Myloma treatment, but it has been proven to have some success in other blood cancers, such as Hodgkin’s. It has fairly low toxicity, so it’s a less intensive option to try at this point. It only has about 30% of working, and 10% chance of possibly putting the cancer into remission, but those are the odds we’re looking at for most treatments these days. So, we figured we might as well try this one first.

The drug is highly controlled because it is a close derivative of Thalidomide, the drug that was known to cause “flipper babies” back in the 70’s. The drug company distributes it only through specialty pharmacies, and those pharmacies then deliver the drug directly into the hands of either Brian or I. The highest risks are birth defects, so obviously they stipulate that you can absolutely not get pregnant while on the drug. Other risks are possible blood clots, and the most common is the decrease in blood counts. This will cause Brian to get very fatigued.

Brian got the pills this past Tuesday, so he started them that night. So far, he’s had a few weird things that could be possible side effects…leg cramps, upset stomach, back pain, feeling hot, etc.

He will do this pill for 21 days straight, and then take a 7 day break. That counts as one “cycle.” We will do 2-4 cycles before we do a PET scan to see if the drug has had any affect on the cancer, and then go from there.

Obviously I hate that he has to be on any treatment or drug…I hate that it causes so many little side effects that can just damper his mood or physical feeling. But, I am still grateful that we have a few options to even try…so I suppose if every cloud has a silver lining, that may be the silver lining to this whole deal.

I’m preparing to leave on a missions trip to Sierra Leone (I’ll blog about that at thatangiegirl.com) and I will be gone for 10 days. Knowing that Brian will be on this treatment without being able to be with him is very hard…it is just another dynamic of trusting that God is a better caregiver than I could ever be. Still hard.

So that’s the update for Brian, for now….

Posted by: Angie Lomas | May 3, 2012

11 p.m. Just wrapping things up to call it a night. It’s been a full day. Hit the ground running at work today…trying to keep all plates spinning, trying to meet deadlines, without one plate veering towards a looming crash. Had to eat out for lunch, again. Ran out of time to make dinner last night, grabbing a take out meal, leaving us without leftovers for today’s lunch. Dishes have been piled on every square inch of my kitchen for at least a week. Laundry is never ending. Worked late today to finish up a project before leaving for the weekend. A long weekend. Thank you, Jesus. Heading to Iowa and taking two extra days off. Hope we can slow down.

Things dont slow down when I get off work tonight. Had to run to the store before coming home…nothing to eat in the house..again. Brian fixing his truck, I take the dogs for a mile walk. I accept the nice break to just get away…even if only for 20 minutes. Back to the kitchen to start dinner. Throw more laundry in the wash. Start tackling the mt. everest-sized pile of dishes.

Throw in a movie while we eat. Good movie. But never really relaxed. Back to laundry. It’s getting late. Brian’s beyond exhausted, so he wanders to bed in a daze. I feed the dogs..far too late for their liking. Take them outside one more time. Throw a huge load of wet clothes into the dryer. Guaranteed to still be wet in the morning after one cycle. Gotta start packing for our trip to Iowa, which will start tomorrow as soon as our eyes crack open.

Finally, the end of the day. Brian’s far into dream land by now. My mind swirling…thoughts of friends, worry of abandonment, hurts from rejection, fear of the future, feeling overwhelmed to tackle life, feeling alone. No sooner than turning the handle on the shower, my own flood spills forth. Never thought I’d be one of those women who cries in the shower. Now I am one.

Scared, broken, lonely, overwhelmed. How can I do this alone? How can I walk this road? I’m so Home-sick…Heaven-sick. Make this broken world come to an end. Put a stop to the suffering. How much longer, God? How much longer will you sit back and wait to restore your Creation? We are more than ready. We are anxious. We are groaning in anticipation. COME, Lord Jesus, COME.

There are days that it’s easier to rejoice in the hope of heaven. There are also days where we stare at the ravaged state of this world and we’re sick and tired of it. Enough already. Take this cup from us! Is there any other way?

But not our will, Lord, but yours be done.

Posted by: Angie Lomas | May 1, 2012

Why I even considered it…

I was recently approached and was asked a question along the lines of “why did you consider dating/marrying Brian if you knew he had cancer when you met him?” I am not sure I have ever been point-blank asked that question before. I was grateful that I was. It made me think. Here’s my answer…

When I first met Brian, I was currently friends with a girl named Megan. Megan had a huge spiritual influence in my life…particularly her marriage story. Before I really got to know her well, Megan had married a man who had cancer, and two months later, he passed away. She knew he had cancer when they met, and when she said “yes” to his proposal. I never met her husband, but in the many, many deep talks that I had with her after that, God completely changed my life. I was in my college/post-college years, but for the first time, I felt like I truly understood what it meant to be a follower of Jesus. Their story and Megan’s testimony really taught me a crucial lesson: “my life is not my own.” I truly consider that to be one of the main turning points of my spiritual life. Sure, I became a Christian when I was young…but it wasn’t until college, and through hearing Megan’s testimony, that I truly grasped the concept of releasing my life and my control to God and pursuing hard after Christ.

So…fast forward to the time I met Brian. While Megan and I had gone our separate ways at that point, the fact that she had a huge spiritual influence on my life still remained true. So while I knew that Brian had cancer, I also knew that this may very well be the plan that God had for my life. I didn’t know what that would all look like, and I still don’t know entirely what that looks like. But I knew that if God was calling me down that road (and I knew that he was…because, HELLO, Brian is irresistible, let alone obvious that God had made Brian just for me)….If God was calling me to go in that direction, then I wanted to walk that path…no matter what may be in my future. If God used Megan and her husband’s story to change my life, as messy and difficult as that story was, then how do I know that he won’t use Brian and I’s story?

Sure, our natural instincts are to protect ourselves…we have a self-preservation instinct in us. But if God was calling me to walk a road that was sure to have pain at some point in the journey, then I knew that He would somehow get me through. And if God might want to use the story of Brian and I, then I don’t feel like I have the right to be selfish enough to avoid that story all together, for my own comfort and lack of pain.

Right now I feel like I’m coming up to the hill where the fear and the pain is starting to creep in….but I know that our God will carry us through. If I had to choose it all over again, just to have Brian by my side and experience the love and the marriage that we have, I would do it in a heartbeat.

I saw this video on someone’s blog today….it’s an illustrated video of a man and woman sharing about their marriage and the cancer they had to deal with. KLEENEX ALERT. It’s the cutest, most beautiful, and loving story….so sweet…and so sad. But totally worth the watch.

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