"I Believe in Love"

(by Barlow Girl) BarlowGirl - How Can We Be Silent - I Believe In Love

"How long will my prayers seem unanswered?
Is there still faith in me to reach the end?
I'm feeling doubt, I'm losing faith
But giving up would cost me everything

So I'll stand in the pain and silence
And I'll speak to the dark night

I believe in the sun, even when it's not shining
I believe in love, even when I don't feel it
And I believe in God, even when He is silent
And I, I believe

Though I can't see my stories ending
That doesn't mean the dark night has no end
It's only here that I find faith
And learn to trust the one who writes my days


No dark can consume Light
No death greater than this life
We are not forgotten
Hope is found when we say,

'Even when He is silent
I believe in the sun, even when it's not shining
I believe in love, even when I don't feel it
And I believe in God, even when He is silent
And I, I believe'..."

For those of you who are new to this blog, or don't know the whole story, I have combined all of my posts regarding the whole cancer thing below. You could click the labels at the bottom of the cancer posts, but then you'd have to read them backwards. Plus, you'd have to weed through all of my ramblings at times of the original posts (not to disappoint ~> there's still much rambling, even with the compiling & condensing)! I hope this helps catch you up to speed! Here's our cancer story:

Originally posted October 1, 2008:
During the last week of August 2008, Chris (aka Butch) started seeing a "floater" in his left eye that looked like a Chinese dragon.

Labor Day Weekend~We had some friends in town, and Chris continued to complain about something in his eye. At dinner on Saturday night, I remember Alyssa digging through her bag to look for eye drops. The next day, I even took pictures of them "inspecting" his eye, because it was funny to me that this little thing in his eye was such a big deal to him.

9/3/08~After about a week of the floater not going away, Chris went to the eye doctor. It had been about 10 years since he had been to see one, and he used to wear glasses some, so it was past time to go! He was immediately sent to a retina specialist who told him he had a melanoma that had hemorrhaged on the back of his eye, and that the standard treatment for this was either radiation or enucleation (removal of the eye). The specialist referred him to an oncologist and said that they would have to do a full body scan to see if it had spread to the liver &/or lungs (which is common for this type of cancer). Talk about a shock!

9/11/08~It took some time trying to schedule an appointment with the oncologist that Chris was originally hoping to see, but that turned out to be a blessing. As it turns out, he found out about another doctor to see for a 2nd opinion. Dr. Boniuk turns out to be an authority on ocular melanoma, and the 1st oncologist would've sent him to this guy anyways! So, Chris went to him on the Thursday before Hurricane Ike made landfall. {I'm pretty sure I will never think about Ike without thinking of cancer ~ two huge storms going on in my life at the same time!} He didn't talk about enucleation, so that was encouraging! He seemed much more optimistic about treatment with plaque radiotherapy (a radiation implant), and they scheduled an MRI & PET scan for the following Tuesday.

9/17/08~A grueling two weeks after the initial diagnosis, we found out from Dr. Lehane (the oncologist for the rest of his body) that there was no metastasis to the liver or lungs. Praise God! This doesn't mean that we're in the clear, but we'll take any bit of good news! I was so afraid that it had been growing there for years & had already spread without us having a clue, because he hadn't had yearly eye exams. [Please take my advice & have yearly dilated eye exams by an ophthalmalogist--yes, I now know how to spell that word correctly!]

9/18/08~After reviewing all of the films, Dr. Boniuk recommended that Chris go forward with surgery to implant the radiation plaque over the tumor in the back of his eye. They scheduled a consultation with the radiology department for the following Tuesday and started the pre-op forms.

9/23/08~We met with the radiologists that would build the plaque. They explained the process of making the plaque slightly larger than the tumor & putting radioactive seeds in it that would destroy the cells. They also stated that the tumor is 8mm in diameter, which means it is medium-sized. [Update: Later reports from his ocular oncologist say it is 12mm, so we're not real clear on this. Finally, in January 2010, we actually found out that the estimated measurement was actually 6mm deep and closer to 14mm in diameter. It is at the top of the medium-sized tumor range. Apparently, Dr B doesn't care to share too much information that might freak us out! There is not an official staging system for OM, but according to the AJCC TNM staging system, it is Stage IIA (T2a, N0, M0). And according to COMS, it is considered medium. For an explanation of the staging, go here.]

So, this Friday (10/3), Chris is scheduled to have the surgery to implant the radiation plaque on the back of his eye, where it will remain for 4 to 7 days. Then, for the next few years, he will see the ocular oncologist every 3 months, and the regular oncologist every 6 months for MRI & PET scans to see if it has spread. Overall, it spreads in half of the people diagnosed.

It's pretty scary. I think Chris is doing well emotionally, but I'm not so much! I would like to have the same outlook as he does. I'm trying real hard to trust God with all of this. I want to be strong, but I've never really considered myself a strong person. And I'm reminded of that with each phone call that I make & email that I write to tell our friends and family the news. In case you are one of those people that I didn't contact directly, please don't take it personally. It is so hard to say the words, because each time I say or write them, it makes it that much more true.

October 3, 2008
We arrived at the hospital at 6:30 am for Chris to have the surgery to implant the radioactive plaque over the tumor in his eye. [The plaque is about the size of a nickel & contains radioactive seeds that will hopefully destroy the tumor & prevent it from spreading to other parts of the body (like the liver & lungs).] By about 9:15, Dr. Boniuk came out to say that they were already finished, and they were bringing him out of anesthesia. Originally, we thought he would have to stay in the hospital for a day or two, but they went ahead & sent him home with me this afternoon! The plaque will be in place for a week, and the effects will be seen over the next few months to a year. The doctor said he would like to see it shrink slowly, so please agree in prayer with us for that!

Christopher is experiencing some "discomfort" as the doctor calls it {but you & I call it something more like "PAIN"}, so he took his Darvocet & went to bed. Pepper doesn't like that he's in there without her, but she'll just have to get over it! A few minutes ago, I walked toward the hallway, and she sat up hoping she could go into the bedroom with me. When I turned the other direction, she flopped down with a "Humph!" sound & looked all sad! She loves her daddy & would love to be in there giving him kisses, but unfortunately that would keep him awake!

The kids are with one of my many wonderful friends! God is so good to bless us with friends & family who love us & don't mind:
  • taking my kids to school (did I mention us dropping the kids off at 5:45 am?)
  • getting up super early to pray with Chris before surgery
  • attempting to navigate the Medical Center
  • attempting to navigate the hospital itself! {Note: 2nd floor = crosswalk}
  • finding a nice cold bottle of Dr Pepper for my mister after surgery
  • keeping me company at the hospital & letting me ramble about crazy weird things
  • checking on my dog & chasing her around the house trying to get her to go outside to potty
  • paying for parking (Lord knows we've had to do a lot of that lately!)
  • searching the world over for a peculiar eye drop prescription
  • enduring an elementary school carpool line {yikes!}
  • bringing us food (though I forgot to mention that Chris requested blueberries!)
  • being there for me, even when I bust out crying in the middle of a casual conversation
  • telling me to call, even if it's to vent, or cry, or scream
  • encouraging me to trust God no matter what
  • praying {please know that I covet your prayers & do not take them for granted!}

I'm sure there are things I have forgotten, but it doesn't mean I'm ungrateful! I really do appreciate everyone's love and support! We have the best friends & family in the world!

October 10, 2008
Christopher got his radiation plaque removed this morning! One of the nurses said that he was talking in his sleep. She said if I gave her $20, she'd tell me everything; but if Chris gave her $40, she'd keep her mouth shut! She was fun. But, I trust him, so I don't really care what he was saying! Anyways, he said it already felt better without the plaque. He was still numb when he said that, though. So, we'll see how he feels later. He has been sleeping since we got home, and I figure he'll sleep for a few more hours. He likes all of the sleeping he has been able to do, but he'd prefer to do it without the pain!

October 24, 2008
He's doing much better now. He had quite a bit of pain during the week following the removal of the radiation plaque (after the local anesthesia wore off). The Monday afterward, I took him to the doctor so they could trim a few stitches. It felt better with the numbing drops, but the pain came back when feeling returned...He now only has a little bit of pain at times. We went to the doctor on Monday, and he really didn't have much to say. He trimmed some stitches again & said to come back in 3 weeks. After that, we'll probably go back 6 weeks later, and then we'll scale down to every 3 months. At some point, they'll take pictures again, and we'll see if the tumor is shrinking at all.

November 13, 2008
Nothing has really changed. At his appointment on Monday, Dr. Boniuk said his eye was healing well, and he didn't see any retinal detachment. When we go back after the first of the year, he will probably do a laser treatment to help prevent radiation retinopathy (which is, basically, damage to the retina due to radiation leaking through the blood vessels). By that time, Chris should be completely healed from the surgery, though the tumor will never go away. There have still been no new pictures taken; but we don't expect any change yet, so there doesn't seem to be a point at this time. Dr. Boniuk still says it will probably take a year to see any effect of the radiation.

January 20, 2009
He had his laser procedure today, & he's at work with his eye patch on & quite happy that he didn't miss Taco Bell Tuesday! {While he was in the Laser Room, I sat in what appeared to be the nurse's office or something. I had quite the experience with a doctor whom we'll call "Dr McMeany". Man, some people are jerks! A child was crying in the waiting room, and he muttered, "Shut up" under his breath. Then, he asked if he could help me, & when I said that Dr. Boniuk had told me to wait there, he muttered under his breath again, saying, "That's weird." Dr McMeany then went on to talk to the nurses about the crying boy & grouched about a few other things. It kinda made me glad for Christopher's quiet doctor.} Anyways, Chris was pretty uncomfortable at first, but he felt a lot better by the time we got back to this side of town. There doesn't appear to be any change in the tumor, according to the pictures that were taken last week. So, that's good. He said again that the tumor is expected to shrink slowly, so no change is a good thing for now.

April 2, 2009
The scans we thought he was going to have 2½ weeks ago didn't happen. Even though it was previously discussed that there would be scans every 6 months, the oncologist was only going to do some blood work this time & the scans in another 6 months. We didn't feel like that was good enough, & neither did anyone else in the OM community that I have gotten to know. The scans are to check for lesions in the liver &/or lungs; because if the cancer was to spread, it would show there first. The problem with only doing the blood work, is that by the time an abnormality would show, the cancer would be too far advanced in the liver for him to enter a clinical trial or other form of treatment. So, after some back & forth with the doctor & a couple of denials from the insurance company, he has finally been approved for the CT scan that has been scheduled for next Thursday.

April 11, 2009
Thursday, Chris & I ended up at the Medical Center ALL day! He had an 8:00 appointment, and we went to get the results at 11:15. {Yet, I had to ask Cara to pick the kids up from school ~ craziness!} Christopher's liver is fine, but there was some fluid on his lung (most likely just viral) that he had to get extracted & analyzed. We learned a new word: thoracentesis. I've learned so many new words on this cancer journey! Dr. Lehane made it sound like we had nothing to worry about, but then he apologized for us having wait through the long weekend to get the results. Then, his nurse said to try to have a good holiday weekend, despite everything. So, I'm not real sure how to feel, but I'm choosing not to worry about it.

April 15, 2009
The results from the thoracentesis came back fine! The radiologist would still like for him to have a PET scan, but who knows whether insurance would approve it now, after denying it twice already?! For now, we are happy that nothing looks suspicious.

May 20, 2009
Chris had an appointment with his oncologist last week, as a follow up to the procedure he had last month to remove fluid from his lung. We're assuming the chest x-rays were OK, since we haven't heard anything. It looks like he won't go back for three months.

July 23, 2009
Chris had an appointment with his Ocular Oncologist today, and we have some good news! His tumor has shrunk some, and the doctor is pleased. He said that it hasn't shrunk too much or too fast. From what we understand, the shrinkage means that the radiation has killed off some of the cancer cells, and the fact that it has happened slowly indicates that the cancer may not have been growing aggressively at the time that it was discovered. We don't have any measurements at this point, but we'll go over the photos & ultrasound pictures in more detail when we go back in October. Also, he'll have his scans again in September or October, so hopefully the results will be the same as last time, & there will be no metastasis.

August 8, 2009
Chris is wearing the eye patch again. Last Saturday, he started seeing floaters again. Before too long, he realized that it was actually blood that he was seeing. He called the emergency number for his ocular oncologist, who said it sounded like something hemorrhaged & to come in first thing Monday morning. On Monday, he confirmed that a blood vessel on the surface of the tumor had hemorrhaged. His retina still looks good, though. He'll be going in again this Monday for a follow-up & to schedule another laser treatment (possibly on Friday). If you remember last time, he went to work afterward. So, he should be good to go again this time. His vision is very bad right now. He could only see light on the chart at 20/400 (but no letters), & he could barely count the doctor's fingers from 3 feet away. He ended up with a terrible headache on Monday (& came home from work early, which he never does). So he has been wearing his eye patch to prevent headaches, and it seems to be helping (though not completely).

August 10, 2009
At Christopher's appointment this morning, Dr Boniuk thought that the hemorrhaged area had improved enough to perform the laser surgery today. The laser should prevent the blood vessel from bleeding anymore, as well as cauterize the entire area that was affected by radiation. So maybe this won't happen again, & hopefully this will help prevent radiation retinopathy (damage to the retina due to radiation leaking through the blood vessels). His vision had improved to 20/400. (Yes, I said "improved" to that acuity, which shows how bad it was last week). He went right to work afterward & actually made it to a 10:00 meeting that he really didn't want to miss! Now, we just need his body to absorb the blood in his eye, and hopefully his vision will be better.

September 19, 2009
The laser treatment in August didn't cauterize the blood vessel in his eye. So, it has continued to bleed for over a month now. Thursday, he went to see his ocular oncologist for yet another follow-up regarding the hemorrhaged blood vessel. He was sent to a specialist, where they discussed surgery to suction out the blood in his eye & see if they could take care of the damaged cells. The specialist didn't seem to think it was a good idea right now. He explained that there is a slight possibility that he could accidentally cut the tumor during surgery, which would allow the cancerous cells to spread. Of course, the cells are all supposed to be dead now, but there's a chance that they aren't. He thinks it should take 6-9 months for the bleeding to stop & the blood to clear out of the eye. Chris thinks it's better to be inconvenienced for a little while longer than to take the chance on the cancer spreading. So it looks like we'll be waiting this out for awhile, unless God chooses to heal him sooner!

November 3, 2009
It has been 14 months since Christopher was diagnosed with Ocular Melanoma. What a trip this has been! He had his scans yesterday afternoon, & we found out today that everything looks good. The doctor said that the scans look the same as the ones in May. We are thankful! He is still dealing with the hemorrhaged blood vessel that I mentioned before, but we'll take that over metastasis any day! As always, we really appreciate your prayers!

January 30, 2010
Christopher had an appointment with his ocular oncologist on Thursday, & Dr B was still concerned about the blood vessel that has been bleeding since the beginning of August. He sent Chris for another ultrasound, and we found that the tumor has shrunk some more. It started at about 6mm deep & 13.5mm in diameter, and is now about 3.5mm deep & still 13.5mm diameter. Dr B was very pleased with the amount of shrinkage at this point.

After looking at the ultrasound pictures, Dr B recommended that Chris go back to Dr C to have the surgery to cauterize the hemorrhaged vessel & clean out the blood. He explained that the tumor is sterilized, so there shouldn't be a risk of spreading cancerous cells. When we went to see Dr C, he also warned of a higher possibility of a cataract developing. We are already expecting cataract surgery as a result of the radiation, so this isn't really a concern for us. He just may end up needing surgery a little sooner than if he only had radiation damage. The only other concern is that after surgery, other vessels inside the eye may ooze some blood, and they'll have to go back & suck the blood out. That also isn't too big of a concern, because it shouldn't be any worse than what he is dealing with right now!

Dr C had an opening for surgery the very next day, so we took it. It was an outpatient procedure called a vitrectomy. The surgery went well, and at the follow up, Dr C said things look good. He explained that he saw some white spots in Christopher's eye. These spots indicate a lack of circulation due to radiation damage, so he might not be able to see as well as they had hoped. He said we'll just have to wait & see. Other than that, it looked good. To me, it looks worse than when the plaque was in his eye, but that blood will go away WAY easier than the blood on the inside of his eye. When Dr C checked Christopher's vision, he was unable to see the chart. But, he could see a few feet away, so that's progress!

As for my mister's recovery, he's doing very well! He is only on Tylenol & shouldn't need anything more than that. He doesn't feel great, but not awful either. He describes it like a paper cut with stitches & all of your eyelashes turned inside your eyelid. {Sorry if that made you gag!} He felt well enough to have a couple of friends over tonight, so I think that's good! He can go back to work on Monday, & he should be able to see out of his eye within a week or two! He'll be able to get rid of the patch & not have to deal with pirate jokes {though I must say, he rocked the patch! Not everybody can get by with that!}

April 3, 2010
We have some good news regarding Christopher's vision! Though the blood was removed as a result of the vitrectomy, there had been no improvement in his visual acuity. We weren't sure that Chris would ever regain vision in his affected eye. As his last hope, he received a steroid injection about a month ago. It didn't seem to be working, but we found out differently at his doctor visit on Thursday. They used the pinhole mask & found that his acuity has actually improved to 20/100. He hasn't noticed an improvement, but the fact that it actually has improved (however intermittent) is encouraging.

June 1, 2010
Chris had his routine CT scans, and we met with Dr L (the oncologist) immediately afterward. His lungs look fine, so that's super! There's a spot on his liver that measures about 5mm, but Dr L isn't worried about it & isn't entirely sure that it wasn't there when he had the last scan. It's the same size as another white spot near the spleen that was definitely on the last scan & hasn't grown since then. There's also a new lymph node that he isn't worried about either. He intends to look at the spot on his liver when we do a PET scan in January, so I guess we're good 'til then. He said that while there's always a reason to worry with cancer, there's nothing on the scans that gives him reason to worry. So my goal is to not worry, either! The following verse is one that I have continued to lean on throughout the entire cancer experience, "You will keep in perfect peace all who trust in You, whose thoughts are fixed on You!" (Isaiah 26:3)

June 17, 2010
My mister had another follow-up appointment with Dr C (the retina specialist and surgeon who performed the vitrectomy & gave him the steroid shot). His vision is now 20/160, & he has a little cataract (something that we figured would happen sooner or later). At this point, Dr C isn't doing anything about the cataract. He explained that in normal people (& by normal, he means elderly people who tend to develop them naturally as they age), it takes about three years for a cataract to be a problem. In Christopher's case, if he has to have another steroid shot, the cataract will grow larger sooner (causing him to need cataract surgery sooner). So, that's what we're looking at. We'll know more at his next appointment in August. One thing that struck Chris & me as quite funny was that Dr C said, "Cataract surgery is like a picnic." Then he quickly said, "You should never refer to a surgery as a picnic." But we understood what he meant! Compared to everything else that my mister has endured (like having a plaque the size of a nickel in his eye for a week!), cataract surgery is nothing.

August 12, 2010
My mister had appointments with both his ocular oncologist & the retina specialist, where we got some good news & some bad news... The GOOD NEWS is that the tumor has shrunk some more. Dr B seems pleased with the progress, so that's great! The BAD NEWS is that it looks as if the vision in my mister's affected eye will never get better. This is the first time we've heard a doctor say this. His acuity is now to the point where he's not even fully counting fingers from a few feet away. (As in, off the charts. As in, guessing at fingers. As in, worse than 20/400. As in, he can't even see the chart, even with the pinhole occluder). So, that's a bummer, but I guess there are worse things in life than being half blind. For now, we are doing what we can to save what little peripheral vision he has left. Dr C showed us pictures & explained a bunch of stuff that is now only barely making sense to me after a hundred doctor visits. Basically, his eye pressure is high; and if we can't lower it, there's the danger of bursting what healthy capillaries he has left (those that weren't as severely damaged by radiation) & causing damage to the optic nerve. So, he has a new type of eye drop that will hopefully lower the blood pressure in his eye. (Did you know that they can measure that? I really never knew what they meant about the pressure until this visit). Neither doctor expressed any concern about the cataract I mentioned in the last update, so I guess we don't have to go through another eye surgery quite yet!

October 14, 2010
At my mister's latest appointment with Dr C, his vision had not improved (which we didn't really expect). Dr C thought there was a slight possibility that the loss of vision was due to something other than nerve damage (like maybe a side effect of the steroid or something), or that his treatment may have caused him to be shortsighted. He even checked my mister's vision with the corrective lenses, but there was still no improvement. I asked about cataract surgery, because we both had the impression that it would be necessary at some point in the next couple of years. But Dr C said that he won't need it because the only reason for cataract surgery is to improve vision. {Honestly, though, I beg to differ. When the lens is completely cloudy, it looks a little freaky. Am I wrong?} Anyways, he addressed my mister's pressure issue again & prescribed a new eye drop. He said that sometimes the slightest drop in pressure could improve the vision a bit, so we'll see if this prevents him from going completely blind...

December 9, 2010
My mister had more follow-up appointments with his ocular oncologist & retina specialist. He had another ultrasound with a different technician than usual, and apparently it was the wrong type. We learned last time that Dr B prefers the accuracy of another kind of ultrasound than the one performed, and he didn't even go over the results. Then Dr C said there is a small spot indicating new damage to the retina, which is just the continuing effects of radiation. Some new vessels are forming around the treated area (where he has been having the circulation issues). These vessels aren't a good thing because they form very haphazardly & can cause glaucoma. If things worsen, he will be treated with an injection that should keep him from losing the eye. So, Dr C is keeping a close eye on it all. Both doctors mentioned the cataract again, but neither of them seem too concerned (seeing as removing it won't help his vision). His pressure was on the high end of normal, so there wasn't too much concern about that this time. He has tried two different drops to lower the pressure & is apparently allergic to something that's in them. So, I guess they'll just continue to monitor it for now. He has a contact lens appointment scheduled for the next time he sees Dr C. He's going to see about a blackout lens that could be worn instead of the patch. Dr B called it a "cosmetic" lens, though. So, I'm not sure if insurance will cover it. If they don't, he'll just stick with the patch. We'll see...

January 6, 2011
My mister's scans were clear! The oncologist reviewed the results with us & compared them with the scans in June. The little spot on his liver is actually smaller than it was in June, so I shouldn't have been concerned about it. {Dr L didn't think it was metastatic, and I should've listened to him. After all, he's the oncologist, & I'm just the SAHM!} His bloodwork looked great (or "boring" as the doctor put it!), and the lymph node that was enlarged last time appears to be the same size. The radiologist report wasn't in yet, but Dr L didn't see anything that concerns him! Praise God for good news!!

February 9, 2011
We received more good news at another follow-up visit with the retina specialist! There's no new radiation damage (so no new crazy vessels), & the pressure in his eye has actually dropped. The swelling is also down. For the first time since the vitrectomy surgery (over a year ago), we don't have to go back to see him for FIVE months (instead of every couple). The only negative news this visit was that his vision has decreased a tad ~ from CF 3' to CF 2'. But that's not a huge difference. And seriously, at this point he can't really SEE out of that eye anyways. It's more like he's guessing fingers at 2 feet away! So for his vision to decrease isn't really a big deal. We decided to cancel the contact appointment that had been scheduled for the same day. Since we already had to meet my mister's out-of-pocket (the first week of the year, 'cuz that's the way we roll), we're almost out of money in the flex plan. It doesn't renew until July, so we'll consider the contact then. If his vision continues to decrease, he probably won't need the patch or a lens. (Because we figure that if his vision is completely gone, his eye shouldn't strain anymore & cause headaches).

March 10, 2011
My mister had an appointment with his ocular oncologist, and all is good! His pressure is still down (though it remains on the upper range of normal), and the tumor looks good & is smaller than before! And the best news of all is...WE DON'T HAVE TO GO BACK TO ANY CANCER-RELATED DOCTOR UNTIL JULY ! We're talking almost 4 months, people! {3 months & 27 days, to be exact!} This is the longest break throughout this entire journey!

July 7, 2011
Due to a miscode on the part of Dr L's nurse, Chris didn't have his complete CT scan as planned. They didn't have him drink barium, & they didn't scan as much of his body as they're supposed to. They usually scan his chest, abdomen & pelvis. This time, they only did his abdomen. From a metastatic standpoint, his liver looks good. My understanding is that it would've been better if he had the barium as a contrast, but it is what it is. Up until Dr L reviewed the scans, we were under the impression that we were going to have to go through it all over again in a couple of weeks. But apparently he isn't concerned about Christopher's lungs right now. The liver is the first site of metastasis in 90% of the patients with mets, so I guess he isn't concerned with it spreading to the lungs? I don't know, and I have a hard time being completely confident in that mindset. But I don't know what else to do about it right now. The nurse apologized for her little miscode, though. I actually felt slightly better because of the simple fact that she accepted responsibility. It didn't fix anything, but I'm glad she didn't try to make excuses. Due to a cholesterol-related issue (the radiologists thought they detected Non-Alcoholic Fatty Liver Disease), he ended up having an MRI of his liver. Fortunately, it all looked good. The results of the liver MRI gave me a little more peace of mind.

July 19, 2011
At the latest visit with Dr C, we learned that Christopher's visual acuity is about CF 1' and there continues to be more radiation damage. There are some new spots indicating lack of circulation, as well as some new blood vessels that concern Dr C. (These are the vessels I've mentioned before that form haphazardly & can lead to glaucoma ~ which if left untreated, could cause him to lose his eye). Dr C is especially concerned that these vessels may form in the front of the eye, which will cause his pressure to increase quickly. The cataract is also worse, and because of it they can't treat the damaged vessels with laser. He may be treated with a shot if any of the following occur: vessels form at the front of his eye, the current ones get worse, or his pressure increases. I asked if the shot would prevent him from requiring surgery, and Dr C said, "Postpone." So, it looks like another surgery is inevitable. The upside to that is they'll go ahead & remove the cataract when he has to have surgery. That won't improve his vision, but it'll be one less thing for them to keep noticing and commenting on. And if any new vessels form, they might be able to treat with laser if there's no cataract in the way. As things stand now, if Chris notices anything different, he is to call immediately. And we're back to seeing Dr C every 2-3 months. If you recall the last time we saw him, things were looking stable. In fact, because his pressure was down & he was seeing Dr B the following month, we didn't have to go back to Dr C for 5 months. But now, even though we're seeing Dr B in 2 months, we have to see Dr C then, too. Fun stuff... :/

September 12, 2011
We had a somewhat frustrating appointment with the ocular oncologist. At first, Dr B acted like things were looking good. Then he asked about the last time we saw Dr C. When we mentioned surgery, he said that he didn't like the idea of Dr C doing the cataract surgery. We explained that Dr C would only remove the cataract if he was already in there for the other surgery he talked about, and Dr B still didn't seem happy about it. He sent Chris upstairs for pictures, and we went on to the appointment with Dr C while we were up there. His visual acuity is now CF at face, but Dr C said that the eye is stable. There's no new radiation damage (since his appointment in July), and he wants to see Chris again in a couple of months. We thought we were good to go, but when we went to check out we discovered that Dr B wanted to see Chris again. So we went back downstairs. He looked at the pictures & asked what Dr C had to say about surgery. We told him that things were stable and there wasn't any discussion about cataract (or any other) surgery right now. Then he said, "A cataract is the least of your concerns right now!" What exactly does that mean?! You're probably thinking that I should've asked him that, but I know that he wouldn't have given a satisfactory answer. ('Cuz that's the way he rolls). So we really don't now what that was about. And he wants to see Chris again in two months. In case you forgot, we had moved to a six month schedule with him. And we have no idea why he wants to see him again so soon...

November 14, 2011
We saw three different doctors this time. First, Dr B felt like things looked fine except for the cataract. He had Dr Hamill, a cataract specialist, come in to look at Christopher's eye. Dr C said that there is no new radiation damage (since July)! We told him about Dr H removing the cataract, and he made sure that we're aware that his central vision will most likely not improve (though there is a slight possibility that his peripheral vision could be improved by replacing the lens). His main concern about the surgery is that it can increase the pressure & cause those crazy vessels at the front of his eye. But he didn't advise against it, and I think they all would like to be able to see & treat the retina easier in the future. Soooo...we went back downstairs to Dr H who basically reiterated what Dr C said when he first mentioned the ease & relative safety of cataract surgery {though he didn't call it a picnic!} & sent us on our way. The surgery is scheduled for January 11th, which is six days after scans. So if we don't meet our deductible the first week of the year, we'll definitely meet it the second. We're good at that...

January 11, 2012
Mister Christopher had his cataract surgery. It was quick & relatively pain-free. We got there a little before noon & were home before Cody got home from school. {Jana & Caleb kept me company while I waited, which was quite nice!} Chris is now the owner of a lens implant, complete with ID card & everything. Seriously, we have an official card with the model number & everything. Do all types of implants come with an ID card & model number?

January 16, 2012
Christopher's scans were clear! Dr L reviewed the scans with us at the appointment the afternoon of the scans, but he hadn't received the radiologist report yet. Christopher called the next day & learned that the report was negative for mets, so we're good for 6 months!

February 20, 2012
We received several bits of good news at the ocular oncologist, though unfortunately none of it affects his prognosis or anything {because of this stupid type of cancer & its potential to micrometastasize long before anybody has a clue that they even have a problem} But we like good news any way we can get it! His visual acuity has improved from CF at face (before cataract surgery) to CF 3-4' now. It's really just in his peripheral vision & hasn't changed his life, but it's still an improvement. And Dr B was able to see much better, which is what they were all hoping for.

I'm pretty sure I explained in the very beginning that the tumor will never completely go away, but it should flatten. Upon examination, Dr B could tell that the tumor had flattened quite a bit, which is indication that the radiation did what it was supposed to do: sterilize the tumor. And as the cancer cells have died, they have been absorbed into his body, causing the tumor to shrink/flatten. So the flattening confirms that the tumor isn't active, which is definitely a good thing. Plus, it has flattened enough that he won't have to do ultrasounds anymore! Ultrasounds used to not be a big deal. They would use a little wand on his eyelid, & the most difficult part was looking the direction the technician told him to look. His last ultrasound was performed directly on the eyeball, and it really was quite torturous.

And lastly, Dr B doesn't think it's necessary to continue to see Dr C right now! His pressure is good, and there isn't currently any bleeding inside the eye. Those crazy radioactive vessels still have the potential to do some damage, but for now they're behaving. So we were able to cancel the appointment with Dr C & won't see him unless/until there's more radiation damage discovered in the future. So we see don't have to see anyone for a few months. I'm not getting too excited about that, though. Last time I wrote something like that in all caps, he ended up going to the dermatologist every two weeks or something crazy. So I'll calmly say that I'm glad & hope it stays that way!

May 24, 2012
Christopher had an appointment with Dr B, and everything looks the same. He recommended that Chris see a new retina specialist (a different Dr C), but Chris decided not to go. At this point, nothing can be done to improve his vision. He doesn't see the point in paying another specialist co-pay for them to take the same assessments as Dr B (whom he sees every three months). As I mentioned before, there doesn't seem to be a valid reason to see him until/unless there's a problem.

July 16, 2012

I still struggle with this journey, & I'm not sure that I'll ever be absolutely OK with it. It's not one bit fun to face the reality that my husband will never be cancer-free. And it certainly isn't enjoyable to always have the thought of cancer in the back of my mind (if not the forefront). Every waiting room I sit in is a reminder that we face this dragon, this beast called cancer. But I have found joy in the midst of it all. I am learning to fear the unknown a little less & enjoy each day for what it is...

Christopher's scans were clear, & we can reset the countdown for another six months! The doctor is actually going to try to get the scans done at the end of the year, but I have no idea if insurance will authorize that. It'd be nice to not have to meet the deductible in the first couple of weeks of the year, though. We'll see...

It was a long & emotionally draining day, but it was good! OM survivor Steve Brooks carried the Olympic torch on scan day! It gave me something else to focus on for awhile, and I was able to share the experience with my OM community through the marvels of modern technology. About 30 minutes before his projected time, I turned on the live coverage along with seven other ladies in one of our groups (including several OM patients, a sister-in-law, & a widow). These people have become like family to me, so it was really neat to share this special moment with them. As things tend to go, we lost the picture shortly before his turn. Fortunately, it came back just in time to see him! At one point, one of the ladies posted, "Am I the only one crying?" Maybe it's weird, but we were so proud to see "one of us" do something so neat! And again, it was a great way to pass some time on a day that tends to be so stressful!

August 23, 2012
Chris had an appointment with his ocular oncologist. Nothing has really changed, so that's great! He is seeing 20/20 out of his good eye & CF 1' (up to 3' if he looks away, blinks, and happens to get a visual for a second) out of his bad one. Dr B noticed a few little aneurysms but didn't seem too concerned. He recalled the hemorrhage (that led to the vitrectomy) several years ago, but he didn't indicate that he thought we'd have a situation like that again. He scheduled the next appointment for three months. I so thought we'd be at six months or greater at this point in the journey, but I know it could be worse.

December 27, 2012
Clear scans once again!!! We actually experienced a bit of a Christmas miracle, because I really didn't think they were going to happen this time (period). And I was pretty certain that they wouldn't happen on the day they were originally scheduled. Dr L's nurse hoped we could get them in before the end of the year since our deductible had already been met. But that put the scans about 5 1/2 months after the ones in July, so I didn't have high hopes of insurance approving them...especially since we have such a difficult time getting them to approve the scans when it has been the full 6 months! If you can believe it, they authorized the scans the first time without having to appeal or anything! And they were actually the right scans, and they happened on the originally scheduled day. Seriously, people, this is a miracle. Add to that the fact that his scans were clear, and it was a great end to the year!

July 15, 2013
SCANS WERE CLEAR!!! While I'm super glad about that, I am legitimately unhappy with the medical oncologist. He doesn't want to see Chris for a year now, which is just a small part of the reason I'm unhappy with him. Each person's case is different, and knowledgeable oncologists will base their follow-up surveillance upon the patient's risk factors & such. The problem is the fact that I am now absolutely sure that I know more about ocular melanoma than Christopher's oncologist. I doubted his competency in the past, but now it has been confirmed. I won't go into all of the details, but none of his reasoning for lengthening the time between scans were based on facts about Chris &/or ocular melanoma. They were based on his knowledge of metastasis in other types of cancer. That'd be super if Chris had some other type of cancer, but he has ocular melanoma. It metastasizes in a completely different way than most cancers. He basically told Chris to pay attention to his body & to call if he experienced any unusual pain. For the record, by the time he would experience any sort of pain associated with mets he would be roughly two months away from death. This is not me being dramatic; it is simply the facts. Up until the very end, most OM patients with mets have normal blood work, feel fine, look fine, do not experience much pain, have all of their hair, and appear to be perfectly healthy. Anyways, I've gone into a few more details than I had originally planned. To wrap it all up...I'm sure that I'd be nervous about lengthening the time between scans even if a knowledgeable doctor recommended it, but I could possibly accept it from a doctor who knows more about OM than I do.

August 29, 2013
Well, I was right in not feeling comfortable about waiting a year for his next scans. But this is one of those times when I wouldn't have minded being wrong. Chris saw his ocular oncologist, and Dr B definitely knows more than I do about OM. And more specifically, he knows more about Christopher's OM. Based on Christopher's age, tumor size, and the amount of time in which the tumor shrank*, Dr B suggested that Chris continue to get PET scans every six months for at least another three years. It is what he would do if it was him, and it is what he would tell his family to do if it were them.

So there you go. I had sorta hoped that I was being overly cautious and was actually wrong this time. And if I can be completely honest with y'all, I had a brief little meltdown after learning of Dr B's recommendation. Though I have researched a lot and know the facts, there's something different about a doctor saying that there are actual reasons that necessitate more frequent scans. In other words, he has a higher risk of it spreading.

So here we are at the five-year mark with a fresh sting. I feel like I've come so far, but I still have a long way to go. I still occasionally find myself looking at stats as if I can trust in them. But they're just numbers, and I have no way of knowing which side of the stats we fall. There's nothing I can do but trust the One who knows. I've said this before, and I'll probably go to my grave saying it...I have no idea how people make it through this sort of thing without having hope in the Lord. Without hope of a better, glorious future with Him, I could easily give in to fear, doubt, and depression. But He is the anchor of hope that keeps me from drifting. And one day He will make everything right.

*I thought I'd explain this bit of information because if it came as a surprise to me, then it probably did to you, too. Throughout the years, Dr B has always said that he was pleased with the progress of the tumor shrinkage and has explained that shrinking too much too soon indicates a fast growing, aggressive tumor. At the most recent visit, he revealed that Christopher's tumor shrunk on the fast side of slow, if that makes sense. So he was pleased, but barely. And it shrunk fast enough that Dr B cited it as another reason he would put Chris in a higher risk category. As I've said before, Dr B only tells us what he thinks we need to know at the time. While I appreciate the fact that he doesn't want to concern us, I prefer to know the whole truth as we go along and not be surprised by the it years later. But it is what it is...

February 20, 2014
After Christopher's scans getting denied (as usual), then the wrong one approved (this was a first!), we had to reschedule scans that were originally supposed to take place in January. It was all worth it to find out that scans were clear! My only bit of concern was that Dr L mentioned a spot on the liver that we had been watching, but it was the same size as his last scan. I had no idea that we were watching a spot on the liver...I'm guessing the radiologist was watching it, but maybe Dr L hadn't read the radiologist's notes last time? Whatever the case, it hasn't changed so I shouldn't be concerned! What's super great is the fact that the doctor is totally fine with scanning again in six months (well, actually five, because we already have an appointment in July, and his MA wanted to keep it then). At first he asked if we wanted to move it to yearly, but Chris said that Dr B suggests that we keep doing them every six months for a few more years. Dr L accepted that and went on to say a few things about some promising drugs in the melanoma field, which shows that he has done his research. Though I know that there are better doctors out there for OM, I am fine sticking with him for now.


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