Moving Forward

First I should mention that after Mark's Gamma Knife procedure, he returned to work the very next day (we all saw the pictures of what the procedure entails). Even though he should have taken the day off to give his body some much needed rest and healing time, he was thinking long-term and knew that there was a good chance he will need each and every one of his vacation days with future treatment options. While he wasn't feeling like himself for most of the day on Saturday, by Saturday night he was up and at 'em and they went to Applebee's to watch the Browns preseason game.

Today's Appointment

Mark and my mom met with Dr. Kendra and her intern today, as planned to discuss his treatment options for the remaining six tumors in his lungs and one in his brain. The intern, with whom they were impressed, explained that his frontal lobe tumor, the one he hasn't addressed yet, is an active tumor and has a blood supply. It is something they need to be mindful of and watch for any symptoms.

Although they left with somewhat of a different plan than I think Mark was expecting, they both agree with Dr. Kendra's assessment and reasoning and feel good about the plan in place. As I had mentioned previously, Mark was hoping to enroll in another immunotherapy clinical trial. The trial would be a combination of two drugs: Illpillmunimab (immunotherapy) and Temodar (chemotherapy by pill). Dr. Kendra explained several things regarding this clinical trial. First she explained that Mark would not be eligible for the trial since he has already taken Temodar before and this is one of the stipulations for the trial (there are always a lot of criteria that need to be met in order to be eligible for clinical trials). Dr. Kendra also explained that it is only a phase 2 clinical trial, meaning there isn't any evidence yet that these two drugs work together. There is, however, evidence that they both work when taken alone and somewhere down the road, Mark might need to try the Illpillmunimab alone.

For these reasons, and the fact that Mark has already had success with Temodar, Dr. Kendra recommends that Mark start taking this chemotherapy pill Temodar for three months to try to decrease the size of his lung and brain tumors. Mark hopes to start taking the drug in a week or two, once he settles things with his insurance company and makes sure they will cover the drug. If not, he's looking at over $10,000 for three months of the drug which just isn't feasible for them. So fingers crossed that insurance will cover it! After a preliminary discussion with his insurance company, it looks like Mark will have to pay the first $650 out of pocket for the Temodar and then insurance should cover the rest but nothing is finalized at this point.

Once Mark starts the chemotherapy, he will take the pills for 5 days, every four weeks. After three months of taking the chemotherapy pill, Mark will get re-scanned. Dr. Kendra will be looking at the results of the scans to see if the tumors are stable (meaning they haven't changed at all) or have reduced in size. If she sees either of those results, Mark will continue on the Temodar. If the tumors have changed at all for the worse, she will take him off the drug and will probably recommend that he tries another drug in combination with Temodar.

The Temodar will not only impact the tumors in his lungs, but will also fight the lingering tumor in his brain. As for the spot under Mark's arm, the reason he initially pushed to get those scans in July because he felt it increasing in size and causing him pain, Dr. Kendra believes it is just fluid and nothing to be concerned about. Thank goodness for that fluid, though, because otherwise Mark's scans wouldn't have taken place until today and who knows whether or not that tumor in his brain would be worse by now. I think the fluid in his arm was his body's way of saying..."Hey buddy, something's going on in here and you better get it checked out!"

Neither Mark or my mom really remember how Mark's body reacted to the Temodar drug the last time. I thought I remember him being extremely nauseous the 5 days he takes the drug and then a few days after. I guess time will tell for sure. In addition to the Temodar, he will need to take an anti-nausea medication (which wasn't covered by insurance the last time). He tried several different kinds and the only one that actually helped the nausea was the one insurance doesn't cover. Go figure.

I will keep you updated as Mark battles the insurance company about the Temodar and when he will officially start taking the drug.

Thanks again for the thoughts and prayers!

It's Gamma Knife Day

Today Mark and my mom arrived bright and early (6 AM) to the James Cancer Center in Columbus for Mark's Gamma Knife procedure. You're probably envisioning the Frankenstein treatment I have described in the past where they drill bolts into his head. That is actually not the case. I was thinking of a different kind of radiation therapy Mark has received in the past. In comparison to that, the procedure he will be getting done today is not quite as bad (although it still looks like it's from the Frankenstein era and they still somewhat have to put bolts in his head).

Mark is all "strapped up" and waiting for his Gamma Knife procedure today.

Somehow he's still smiling! That's his positive attitude!

When Mark first arrived, they put the "halo" on his head and did another MRI of his brain tumor to figure out exactly where the tumor is located. Next they waited for the computer to figure out the exact coordinates for the surgery, a very important step so they don't end up radiating a part of the brain that doesn't need it. Waiting for the coordinates and getting everything set up is the longest part of the day. The actual procedure only took about 20 minutes. The nurses and doctors played Beatles music for him while the procedure was taking place. He said at one point he almost drifted off to sleep.

When I talked to Mark he had a pretty bad headache from the "halo" being screwed so tight to his head, but he was doing well otherwise and of course, in great spirits!

Next Steps:

Mark meets with Dr. Kendra next Thursday, August 19th to discuss the next course of action. Mark would really like to enroll in another immunotherapy clinical trial currently taking place at MD Anderson in Texas using a combination of the drugs Illpillmunimab (immunotherapy) and Temedar (chemotherapy by pill). These options will be discussed with Dr. Kendra next Thursday.

In a couple of weeks Mark will have another MRI to see whether or not today's Gamma Knife procedure has decreased the size of his brain tumor. This new scan will also be interesting to compare to the old scans in regards to the other brain tumor in question, as several doctors still believe Mark should have brain surgery to remove it.

We will know more next Thursday! Thanks, as always, for your thoughts and prayers!

Fourth opinion's a charm? Not quite.

My mom and Mark met with the radiology oncologist, Dr. Gresula, today (after waiting for two hours to see him, which makes them very angry!). You aren't going to believe me when I tell you this, and I'm exhausted at the idea of even having to write out this confusing mess, but Dr. Gresula agrees with Dr. Kendra that the frontal lobe tumor has gotten bigger and he recommends that Mark have brain surgery to remove it. He also recommends having the gamma knife procedure done on the new, center tumor following the brain surgery.

He agrees with the neurosurgeon and the neuro-oncologist who said that the frontal lobe tumor isn't new but he strongly disagrees with their assessment that it's nothing to worry about. While he acknowledges that the tumor was on old MRI scans from 2009, he believes the tumor has grown in size since then. It seems he was pretty adamant with my mom and Mark about his recommendation to have the frontal lobe tumor removed with brain surgery, the sooner the better. He doesn't think it's wise to wait until Mark is weak from other treatments to address the issue or wait for the brain tumor to start to bleed, as Melanoma brain tumors often do.

So now out of four doctor's assessments, two say Mark needs brain surgery, two say he doesn't. Two say the frontal lobe tumor is nothing to worry about, two say it is. What a mess! The optimistic attitude I reported yesterday was nowhere to be found today. The roller coaster of emotions continues. I've learned that it comes with the territory of cancer.

I can't imagine how my mom and Mark are feeling because I feel completely exhausted just hearing the results of each appointment, trying to make sure I'm understanding everything correctly (which I'm sure I never quite do) and then trying to write about it and make sense of all the information we've gained in the last few weeks so that I can report it to you. The trying to make sense of it all is the exhausting part because it doesn't make sense! It's so confusing!

My mom and Mark told Dr. Gresula they disagree and that they want to focus on the gamma knife on the new center tumor and then move on to focusing on the six tumors in his lungs, just as the neuro-oncologist recommended yesterday. If after all of that, the scans still show the frontal lobe tumor as a problem, then Mark will address it. Mark has been trusting his instincts for 5 1/2 years as he's battled this disease so I guess we have to hope that his instincts are once again correct by choosing not to have the brain surgery.

The radiology department will call Mark in the next two weeks, maybe only giving him a days notice, to set up the gamma knife procedure. I will let you know when he gets that call. In the meantime, my mom and Mark are camping at Mid Ohio this weekend and hopefully will be able to enjoy themselves. They were both looking forward to having a beer! Now I need one too!

Back on track with a plan in place

On Monday evening, after a very frustrating and confusing day, Mark sent an email to his oncologist, Dr. Kendra, asking for answers about the tumor. He explained the discrepancy between her opinion and the neurosurgeon's and told her he really wanted to have some solid answers before meeting with the radiologist on Thursday.

As of this morning, Mark still hadn't heard back from Dr. Kendra so Mark called her to confirm that she did in fact receive his email. She had received it and agreed with Mark that he should meet with the neuro-oncologist, Dr. Cavaliery, who specializes in cancer of the brain. My mom and Mark were really excited about this recommendation as they have met with Dr. Cavaliery before and really value his opinion (and dry sense of humor). Mark called Dr. Cavaliery's office and they were able to get him an appointment this afternoon (after Mark adamantly objected to their first suggested date of August 19th, reminding them that he could have a life threatening, large tumor in his brain).

My Mom and Mark took the afternoon off work and drove to Columbus to meet with Dr. Cavaliery and get some answers. On their way to the appointment, my mom called the doctor's office to make sure Dr. Cavaliery had both the most recent MRI results as well as the last year's worth of scans as to not repeat the confusion of Monday's appointment. I have to applaud my mom and Mark for both being so proactive and determined to get the best care for Mark.

After reviewing the old and new scans of the brain, Dr. Cavaliery agreed with the neurosurgeon. The large tumor in the right frontal lobe of Mark's brain was in fact old news and a result of previous gamma knife treatments. The same spot was shown in MRI scans from 2009. The new spot in the center of Mark's brain is IS a new tumor and the area that needs to be addressed. I have to take back the negative things I said about the neurosurgeon who did actually know what he was talking about. It was Dr. Kendra who was somewhat off of her game when she first met with my mom and Mark. The day of their appointment with her, she had just returned to the country at 4:30 AM and saw my mom and Mark at the very end of her 12 hour day. She probably didn't look at his previous scans and just assumed it was a new tumor.

Unfortunately what this means is that Mark was taking steroids, the drug he didn't want to take in the first place because it could reduce the immunity he gained from his clinical trial, for no reason at all. Mark informed my mom that he had lied about taking them. He took the first steroid pill and then didn't take another one after that. He trusted his instincts which were telling him not to take it, and now we're glad that he did!

When I asked Mark if he was frustrated with Dr. Kendra for causing so much confusion and being somewhat careless with the results of the MRI he said he didn't want to point fingers and say 'You were wrong.' At this point he said it's more important that we move on and focus on his treatment. So that is what we plan to do. Gotta' love that "onward and upward" attitude of his! After all, as Dr. Cavaliery said to Mark about the small tumor in his brain, he has "bigger fish to fry," referring to the scans of Mark's lungs. He recommended that Mark have the gamma knife procedure on his brain as soon as possible and then start focusing on the six tumors in Mark's lungs.

Mark meets with Dr. Gresula, the oncology radiologist who would be performing the gamma knife procedure, tomorrow afternoon. He hopes to set up the gamma knife procedure for next week. This is the "frankenstein" treatment, as I so endearingly call it, which puts bolts in his head so that he can be attached to the equipment. It's no joy ride. That being said, I'm hoping it won't be nearly as painful for him this time around, as he won't have the huge, healing incision on the back of his head from brain surgery as he did the last time he underwent this procedure.

After the gamma knife procedure is completed, Mark has a big decision to make about his next course of action. He can either do the chemotherapy drug Temodar that he has used before with positive results, or he can try to enroll in another, new clinical trial using a new immunotherapy drug. At this point, I think he's leaning toward the immunotherapy but he still has a little time to decide. I know Mark and I know that he will be researching his options like crazy before he makes a decision.

So the good news is, Mark doesn't need to have brain surgery. He doesn't have a huge tumor in his head causing him to run the risk of having a seizure (although he does still have a new, small brain tumor), he didn't take the steroids so he probably hasn't done anything to diminish the results of the immunotherapy clinical trial and he finally has a plan of treatment in place. I can't emphasize enough how much more optimistic and relaxed he sounded today on the phone now that he actually knows what is going on with his brain and has an action plan in place.

I will let you know how his appointment with the radiologist goes tomorrow and when he will be having the gamma knife procedure. Thanks, as always, for the thoughts, prayers and encouraging messages you've been leaving for Mark. I appreciate it very much and I know it means a lot to my mom and Mark.

Another appointment, more confusion and more questions

Mark met with the neurosurgeon this morning and the appointment certainly didn't go as he expected. He brought the MRI scan with his oncologist's (Dr. Kendra), notes with him to the appointment. Based on the information Mark received from Dr. Kendra last week, he was expecting to meet with the surgeon today, show him his MRI of the brain, discuss Dr. Kendra's recommendation of brain surgery to remove the tumor and more than likely schedule the surgery before he left.

Instead, when the neurosurgeon looked at Mark's MRI, he dismissed the large tumor Dr. Kendra (and all of us) were so worried about, explaining it was simply a result of Mark's previous Gamma Knife procedures rather than a tumor. The surgeon focused his attention on a small dot in the middle of Mark's brain. He informed Mark that it was in fact the new tumor and that he would use the Gamma Knife radiation to treat it. Last week, Dr. Kendra told Mark the small dot in the center of his brain was probably a calcium deposit and not anything to be concerned about. When Mark explained to the neurosurgeon his conversations with Dr. Kendra last week, the neurosurgeon dismissed them saying she is an oncologist and this is his specialty not hers.

I'm sure you can see the problem here: Mark has now received polar opposite information from his trusted oncologist of five years and the neurosurgeon he met with today. While he was very glad to hear someone say he doesn't need brain surgery, he really wasn't looking forward to having another one of those, it's also very scary to have one person tell you it's a life threatening tumor and someone else telling you to ignore it.

What a frustrating position for him to be in. He doesn't know who to trust. Dr. Kendra is having him take steroids because the tumor is so big that he risks having a seizure, the neurosurgeon is saying it's not a tumor at all and he should ignore it. Dr. Kendra is saying the circle in the middle of his brain is a calcium deposit and nothing to be concerned with, the neurosurgeon is saying it's a new tumor and needs to be treated. The most frustrating part of all of this is while both of these doctors want to be experts and have the right answers, Mark's life is at stake with the person who is wrong.

I am not a doctor and I am certainly not an expert on cancer (although I've definitely learned a lot over the last five years), but my first question was: why wouldn't the neurosurgeon compare Mark's last year worth of MRI's to this new one. If in fact the large tumor is really just a result of his Gamma Knife procedures (which he hasn't had in years), wouldn't it have shown up on the previous MRI's? Why would it just be showing up now, a few years later? And how can the neurosurgeon, who has never seen Mark before or looked at any of his previous scans over the last five years, possibly know which tumors are new and which ones are old?

Obviously these two doctors weren't on the same page before this appointment which is another really frustrating component. Mark had to use a half day of his vacation for this appointment and doesn't feel he left with any answers, only more questions. His vacation days are very limited and he will certainly be needing all of them (and probably more) when he does start his various treatment plans.

I know Mark left his appointment today extremely frustrated, very confused and although he didn't say so, I'm sure very scared too. Who wouldn't be? We look to these experts for answers and what is quite possibly worse than them having none at all, is having two strong, completely opposite opinions and recommendations for treatment.

The neurosurgeon recommended that Mark meet with a radiologist, someone who would actually be performing the Gamma Knife radiation on the tumors so he plans to meet with him Wednesday afternoon. In the meantime, he is going to try and get in touch with Dr. Kendra for some answers.

Please pray that Mark finds the answers he needs to make the best decision for his health and that he is soon clear of this frustration and confusion so that he can focus on fighting the good fight and staying alive.

Preparing for another battle

In December of 2009, Mark had a tumor removed from underneath his arm. It was wrapped around his nerve and extremely painful. They removed it and he returned to work very quickly (much more quickly than his doctor and surgeon would have liked). Since that time, he had clean scans in February and was doing really well.

Recently (unbeknownst to me), he started feeling pain underneath of his arm again. Even though he wasn’t due for his regular scans yet, he knew something wasn’t right and told the doctors he thought he needed them now.

On Friday morning, July 23rd, Mark had both a CT body scan and an MRI of his brain. That afternoon he received a call from a Physicians Assistant at the James Cancer Center informing him that there were new lesions in his brain, in three locations, and activity under his arm where he had his last surgery. It is the worst re-occurrence he has had yet. Unfortunately, his Doctor, Dr. Kendra, was out of the country at a Melanoma Conference so Mark had to wait until the following Wednesday to meet with her (not unfortunate that she continues to advance her knowledge of Melanoma, just unfortunate that he had to wait to get some answers, time is something Melanoma patients don’t have a lot of).

On Wednesday, Mark and my mom met with Dr. Kendra. I missed Mark’s call on his way home from his appointment and this is the message he left on my phone: "So, it's not as bad as I had anticipated. I need another brain surgery and then radiation of the brain. Then I'm going to start chemo therapy and I might need to start a new immune booster clinical trial for the other 6 tumors they found in my lungs and the other tumor under my arm. So, it's not as bad as I thought it was going to be."

Considering we didn’t even know about the 6 tumors in his lungs, and one of his tumors in his head is so big and swollen that he is running the risk of having a seizure right now, I would have guessed the appointment went worse than he expected. But Mark heard the doctors say, “It’s attackable.” And that is all he needed to hear. If the doctor that he knows and trusts, says he can try to fight it, he is going to do it. And to be honest, even if she said he couldn’t fight it, he probably would try to anyway! That is just who he is. And that determined, positive attitude is one of the reasons he is still alive.

As for the next steps, first things first. Mark needs to get rid of the largest tumor in his brain. He is currently taking steroids, at the recommendation of his doctor - something he usually refuses to do since it can reverse the effects of his original immunotherapy clinical trial. I guess when you run the risk of having a seizure without taking the steroids (and when the doctor says you can't drive unless you take them), it makes the decision much easier. We are just glad he's taking them.

He meets with a brain surgeon on Monday morning, August 3rd. Unfortunately, the original surgeon who performed Mark’s brain surgery 5 years ago, is no longer at the James Cancer Center. So the brain surgeon he meets with on Monday is someone he has never met before. Mark said he’s going to be evaluating this new brain surgeon just as much as the brain surgeon will be evaluating him. Again, that’s our Mark! After they meet (assuming the “evaluations” of each other go well), they will be scheduling his brain surgery. It will probably happen very soon, maybe even within the next week.

After the brain surgery, Mark (and his doctors, but mostly Mark) will then look at different options (which he is researching right this very moment) for treating the other tumors.

For now we will focus on getting the first tumor out of his head and pray that the surgery goes well and they are able to get it all out.

Thank you all so much for your thoughts, prayers, kind words and support. It means so much to all of us. Mark has a rough road ahead. He knows it and we know it. But he is willing to fight the good fight and we are committed to supporting him every step of the way. After all, Mark says he knows his time on this Earth is not done and we agree.

In the meantime, Mark encourages all of us to "Live Like We're Dying" (the only country song Mark actually likes, as cliche as it may sound). He says it's an amazing way to live life and he would know. He's been living that way for over five years.

I would be so appreciative if you would leave positive and encouraging comments for Mark and all to see on this blog. It's going to be a tough road ahead and I know he could use your support.

Five Years and Counting...

Mark has hit the five year survival mark since his diagnosis with Stage IV Melanoma Skin Cancer. According to cancer.org, the 5-year survival rate for those with Stage IV Melanoma is only 15-20%. Even worse than that, the survival rate for those with Melanoma that has metastasized to the brain (like Mark's) is only an average of 4 months. These were statistics that five years ago, seemed so scary. Of course, they are still scary but, fortunately for us, no better yet, miraculously for us, Mark was one of those 15-20%.

In honor of Mark reaching this important benchmark, I want to share with you my journal entry from March 20, 2005, two days after I found out he had been diagnosed with Stage IV Melanoma Skin Cancer.

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March 20, 2005

I am so scared right now that the only thing I know to do is write. My mom called me on Friday with the news that my step-dad Mark has Melanoma skin cancer. It hit me like a freight train because I had no idea there was even the slight chance - I didn't even know anything was wrong.

The dermatologist - after being probed by my parents - gave Mark an estimated 1 to 2 years to live. I can't imagine in 2 years him being gone from our lives. I try to think positive and be glad that I even have 2 years left with him, because I could have received a call saying that he was dead. But this finds me little to no comfort. Two years isn't enough. We need him around much longer. I am grateful that I am given the chance now to tell him everything I want him to know - things I've never said to him before. But I'm very angry that such a wonderful person is even faced with the battle he's about to face. He has done nothing to deserve it.

Even as I'm writing this, my emotions are numb. From Friday until Saturday night, I couldn't stop crying. And now, I couldn't cry even if I wanted to. It doesn't feel real to me right now. I honestly feel like I'm in a dream. I wish more than anything I was. He goes to an actual cancer specialist this week and I am hoping and praying that maybe they will give him good news and they will be able to remove the tumor and that it hasn't spread to his lymph nodes as the dermatologist had suspected. I would give anything for that to be true. I can only hope that the next time I am reading this journal, I will be thinking to myself "Wow. What a scare that was! I'm so grateful that he's going to be okay."

I don't want this to be the first entry to an ongoing journal that I track his chemo processes and progress in. I want this to be the only entry needed - besides the follow up in which I explain that everything is going to be okay. Until then....

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As many of us know all too well, that journal entry was in fact the first of many. Mark did meet with a "cancer specialist" (I now know that the specific name is an oncologist, one of the many terms I'm much more familiar with now, five years later) and he found out that the cancer had in fact spread to his lymph nodes and that his diagnosis was actually much more grim than one to two years. It was actually only six months. We know now that he had a very long journey ahead of him with an excruciating clinical trial, chemo, radiation, bolts in his head, pills that made him sick, tumors in his brain that kept appearing, a major surgery in his abdomen with a wound that would take months to heal. The list could go on and on.

In spite of the fact that things did get worse after this initial journal entry, much worse actually, there is one thing I want to focus on. Five years ago, I wrote

"I can only hope that the next time I am reading this journal, I will be thinking to myself 'Wow. What a scare that was! I'm so grateful that he's going to be okay'."

The odds were stacked against us and Mark fought like hell to be where he is today. I'm not a fortune teller and I have no idea what the future holds but today, after reading my journal entry from five years ago, I can honestly say, Wow. What a scare that was! I'm so grateful my step-dad is okay.

What a miracle that is!