One night in the hospital and already feeling better!

I talked to Mark this morning and he sounded like a different person. I couldn't believe how much better he sounded! I haven't heard him with that much energy in a few weeks now. Granted, it was because of the drugs they are giving him but it was just great to hear him with energy. He said he now understands why athletes like steroids so much because he feels great on them! I asked him if that meant he was going to start lifting weights now and he said yes, starting tomorrow. :)

Now that they have him medicated and feeling better, his appetite is back which is good, except he's not allowed to eat anything until after they run all of his tests this afternoon. He said that is a little frustrating to finally want to eat something for the first time in weeks and not be able to.

When he was admitted to the hospital last night, he was greeted by two nurses who helped him during his IL2 clinical trial 5 years ago. It was the first time he had seen them since and they recognized him right away. They couldn't believe he was still alive after all that he has been through and the entire experience of seeing them again was very touching to Mark. He said it really made him sit back and think about how much he has overcome in the last (nearly) six years and how much he has accomplished. I think he is finally starting to realize what an inspiration he is to others.

The Melanoma survivors are few and far between at the James so Mark is pretty well-known there. One of the nurses told him he is even on a poster in the hospital somewhere! They were trying to find it and bring it to Mark so he could see himself on the poster. I hope they can get a picture of it if they do see it so I can share it with all of you!

Mark told me he's been doing a lot of soul searching over the last few days and he's come to a few important decisions. He does not think it would be a wise choice to follow through with the fourth infusion on Monday. He knows that his body doesn't have anything left to give at this point and it's in his best interest to just focus on gaining his weight and strength back. I was so relieved to hear him say this. In all of the six years he's been battling this awful disease, he's been so determined to complete the treatments by any means necessary to stay alive, but I think he realizes that the best thing he can do to stay alive this time, is give his body time to recover before giving it another infusion that will make him so sick.

He also agrees that rather than push so hard to get out of the hospital (which he doesn't regret doing for Christmas and would do it all over again, he said) he knows he needs to stay there as long as the doctors think it's necessary. He knows that he can't afford to go home and not be able to eat or drink and lose more weight as he has no weight left to lose. I felt like I was talking to a different person when he was telling me all of this. It made me so relieved to hear! He is really listening to his body and knows what he needs to do to take care of himself.

I will let you know the results of the tests this afternoon as soon as I hear anything. In the meantime, Mark strongly urged me to still travel to Pittsburgh to spend time with family and have fun for him since he wanted so badly to be there and can't. I'm sure he would urge you to do the same thing. Enjoy the last night of 2010 and celebrate all that 2011 has to bring! He said confidently this will not be his last New Year's Eve. If he didn't believe there would be other New Year's for him after this one, he wouldn't be fighting so hard to stay alive. He truly believes it and I do too!

Mark is back in the hospital

A home health nurse came to Kathy's house today to give Mark an IV. After receiving the IV, it was expected that Mark would feel a lot better. Unfortunately, he still continued to get worse and requested that he be taken to the James Cancer Center in Columbus. If you know Mark or have learned anything about him from this blog, you know that for him to actually request being taken to the hospital, it must be serious.

He is still having difficulty eating, the pain in his abdomen has returned and he continues to lose weight and strength. When they weighed him tonight upon his arrival at the hospital, he had lost more than thirty pounds in the last few weeks. He has at the lowest weight right now that he has ever been during his battle.

The doctors requested that he not eat or drink anything after midnight tonight so that they can run some tests on him in the morning. He will not be traveling to Pittsburgh to spend New Year's with the Fort family, which he and my mom both really, really wanted to be able to do.

Hopefully we will have more information after they run the tests tomorrow about why he is continuing to go down hill. As always, thanks for the prayers.

Prayers needed!

I talked to my mom tonight and Mark is in need of some prayers. He has continued to lose weight and has probably lost between 25-30 pounds in the last three weeks. Although he has been able to eat and drink small amounts, he is is very weak. A home health nurse is coming tomorrow to give him an IV to hopefully help give him more strength. As his brother Greg, who flew in from California to surprise him, said; Mark's spirit is like titanium but his body is in need of a huge pick-me-up.

I talked to him tonight and of course, he was optimistic. He said today is the best he has felt yet and that although much slower than he had hoped, he is moving in the right direction. As of last night, every time he tries to talk, he gets the hick ups, which sound quite painful. Our conversation came to a quick end tonight when the hick ups kicked in.

He is staying at his sister Kathy's house and she, Greg and my mom are all taking care of him. It's been a lot of stress on my mom who is working 11.5 hour days, trying to make up the time she missed last week while he was in the hospital, going to Butler after work to take care of the dogs and things around the house and then driving to Shelby to be with Mark. But he's very comfortable there and is being very well taken care of during the day while my mom is at work (thanks, Kathy!).

Mark is scheduled to go to Columbus on Friday morning to get his blood work done, as he always does the Friday before an infusion. He plans to travel to Pittsburgh on Friday to celebrate Christmas with the Fort family and he is still planning to have his fourth Ippy infusion on Monday. In my mind, I don't see how any of this is possible based on how he sounds on the phone and the report I got from my mom tonight, but Mark never ceases to amaze me. And when you tell him he can't do something, he will almost always prove you wrong.

Please pray for Mark to regain his strength and weight. Please pray that his fourth infusion on Monday doesn't cause even more severe side effects than the last and that his body can handle it. Please pray that all of this pain and suffering caused from the Ippy clinical trial is worth it and that it is actually working to fight his cancer. Please pray for my mom to continue being strong and doing all that she can to be there for Mark and continue working hard so they can pay their bills.

I know, those are a lot of requests but I have to be honest, I'm very concerned. He would be mad to hear me even sounding the slightest bit pessimistic, and I'm not trying to be. I'm just very worried about the effects of this last infusion, how slowly he is recovering and what the fourth infusion may do to his already weak body on Monday. We have gotten used to seeing Mark bounce back so quickly from his treatments, but this one was just too much for his body to handle. I do remember hearing that the third infusion is when your body should really start reacting to the drug and that the more severe the side effects, the more likely it is that the treatment is working. I'm hanging on to those facts right now.

Thanks for all of your support. We were so happy to have Mark home for Christmas and it truly meant the world to him to not spend Christmas in the hospital. Thanks for all of your prayers and please keep them coming!

The blood clot issue returns...

With no mention of the blood clot issue for the entire first 24 hours Mark was at the James, we all assumed it was a non-issue. Yesterday, the doctors read the report from Med Central and were very concerned about getting more information on the blood clot in the lungs. They weren't able to get the images from Mark's CT scan from MedCentral (which I still don't understand why not) so they wheeled Mark to the chest hospital (next hospital over from the James) yesterday to have another CT of the chest done. Once they got him there, they decided they didn't want to make him go through the trouble of drinking the liquid for the CT scan prep, because of all the stomach/digestive issues he's been having from ippy, so they wheeled him back to his room and scheduled an MRI of the chest for this morning (should be happening right now). I will let you know when I learn the results of the MRI.

When I spoke to Mark yesterday morning, he didn't sound good. At first I thought it was because he was highly medicated, but he informed me that he hadn't taken any medication all day except for the steroids. He told me he was just very, very weak, which makes perfect sense since he has lost 16 pounds in a week (probably more at this point) and hadn't eaten or drank anything since Sunday. He had to get off the phone suddenly because his stomach was upset again.

When I talked to him later that evening, he sounded much better. His spirits were good and he was anxiously awaiting my Mom's arrival after work - with a bag of goodies for him: his laptop and cell phone. The James has wifi in their rooms so I'm glad that after the testing today, he will be able to peruse the Internet (which he can do for hours) to help the day go by faster since he'll be all alone again.

While my Mom was there, she felt very good watching him eat and drink and thought he was moving in a positive direction. Unfortunately, right before she left he got sick and it all came back up.  She's worried about the fact that he still can't hold anything down.

On a positive note, a group of Cub Scouts put together Christmas packages for the patients at the James Cancer Center and Mark received one yesterday. It really made his day! He was telling me about all the items that came in it and how touched he was by their kindness. So thankful for those Cub Scouts!

Getting transfered to OSU

Mark finally saw a doctor this evening who had really studied Mark’s chart and was very knowledgeable about Mark’s history. They both thought he was very sharp and the doctor was able to convince Mark that he needs to stay in the hospital, which is no easy feat.

The paperwork is being filed right now and Mark is being transferred to OSU so that he can get on a stronger dose of steroids. He is being given a medication that is five times stronger than Morphine but it’s still not taking care of his pain. The doctor explained that Mark will need to be at the OSU hospital for at least two days. They are hopeful that he will be home by Christmas but of course there are no guarantees.

In addition to getting his pain under control, they really need to get his stomach issues taken care of or he runs the risk of a perforated bowel, which is the worst side effect from ippy and the one that has caused many people to die in this clinical trial. The doctor assures Mark that he doesn’t need to worry about dying from the perforated bowel, as long as he’s being monitored in the hospital.

My mom is most concerned about his weight. He’s lost fifteen pounds since last Monday from all the stomach issues from the infusion.  Now more than ever he needs his strength but a lot of his strength was in that fifteen pounds.

When I got off the phone with my Mom they were talking to another doctor. I will keep you updated with any new information as I become aware of it. There has been no mention of the blood clot in the lungs since last night so I’m assuming (and hoping) there isn’t one.

Thanks for all the prayers today and everyday!

The dark side of Ippy

Mark had another gamma knife surgery a few weeks ago and his third ippy infusion last Monday. He had the worst side effects to date from the latest infusion and lost twelve pounds last week alone. My mom said he looks very thin and very sick.

Yesterday he was complaining of severe abdominal pain. Early yesterday evening, he told my mom his pain was a 10 and that she would need to take him to the emergency room in Mansfield. So she did. The doctors told them soon after that the would need to be admitted. They spent the entire night in the emergency room before he was admitted to Med Central this morning.

They ran a CT of his chest and Mark was very disheartened when he saw that his lung tumors didn't appear to have decreased in size, meaning the ippy clinical trial hasn't worked...yet. My mom tried to remind him that sometimes it doesn't start working until after the third infusion and not to get too down about it. But when you're in such severe pain from the treatment, it must be very devastating to think it might not be working.

The doctors also think he might have a blood clot in his lungs and they want to get him on a blood thinner. My mom and Mark really want to consult with the doctors in Columbus before doing this to make sure it won't make him ineligible for the clinical trial.

Please keep both Mark and my mom in your prayers and I will keep you informed if and when I learn more.

Two infusions down, Gamma Knife to go

When people start asking me, "How is Mark doing," that is when I know that it's been too long since I've written an update. My apologies!

Last Monday, Mark had his second "Ippy" infusion. I think it's safe to say his side effects were much worse than with the first infusion. I saw him four days later on Thanksgiving and it was very obvious he was just not feeling like his usual self. He did help with all of the Thanksgiving preparation and turkey carving, but by the end of dinner, he had no energy left. He was still in good spirits and answered trivia questions to a game we were playing while laying on the couch with his eyes closed (and got most of the questions right, by the way - he is one smart cookie). He gave a very nice, heartfelt and thankful prayer before dinner. That being said, it was still sad to see him with such little energy and feeling pretty bad. He gets his next infusion in two weeks on Monday, December 13.

Tomorrow, he goes in for another Gamma Knife procedure on his brain. I am very thankful he is having the treatment, because when I talked to him a few weeks ago, he wasn't sure whether or not he would. He was hoping that the infusions were working on his brain and that he wouldn't need the Gamma Knife. When I asked him if he thought he should just do the Gamma Knife either way to increase the chances of getting rid of all of his brain tumors, he reminded me how unpleasant the procedure is to have bolts drilled into your head. It's much easier for me and others to advise when it's not our brain and pain. Nonetheless, he is going through with the procedure tomorrow.

Mark will be getting more scans done in January and that will be the first look at his lungs and brain since he started the infusion and will help to determine whether or not they are working. I pray every night that they are.

I know I say it all the time and I'll keep saying it; Mark's persistence and desire to fight this disease and stay on this Earth as long as possible never ceases to amaze me. Sometimes I'm not sure how he has enough energy to battle the insurance companies, call the doctors constantly to get his procedures and appointments scheduled, recover from his infusions and procedures all while working full time. I try to remember this and think of him each and every time I feel like I'm "tired" or "stressed."

My mom's health hasn't been great lately either. She was recently diagnosed with Hyperthyroidism and has been undergoing a lot of tests to get that situation figured out and properly medicated. Between the two of them, they are definitely doing their part to help out the medical industry during this recession!

Thanks for your thoughts and prayers!

Getting ready for Ippy!

Mark was able to get an appointment to see the Ippy doctor yesterday. This shouldn't come as a surprise to you, but it was because of his persistence in calling the doctor's office and insisting that they see him this week that he was given the opportunity to take an opening when someone else canceled their appointment yesterday afternoon. Needless to say, he jumped on the opportunity, took the rest of the day off of work and drove to Columbus.

The doctor highly recommended that Mark start the Ippy clinical trial first, rather than starting with Gamma Knife Radiation. Mark had no objections to this plan since he was been waiting for months to do this clinical trial. “We don’t want to go into the hindsight of the fact that I wanted to do this drug two or three months ago," Mark said. "We just have to move forward.” And that we will!

Mark should be starting the Ippy clinical trial within the next week, depending on how long it takes to get the three different tests that need to be taken: a bone scan, EKG and bloodwork. He hopes to have all of this scheduled before the end of the week. If that happens, Mark will most likely be going down to Columbus on Monday to get his first Ipilimumab infusion. If not Monday, he should definitely be starting the trial sometime later in the week. Bristol Myers-Squibb is offering this clinical trial for free, to add to the numbers of their research.

The infusion itself, given intravenously (through an IV), will only take about 90 minutes but they want to watch him for a while after he receives it to make sure there aren’t any adverse reactions. Mark expects to be there somewhere between 3 1/2 to 4 hours for each treatment. He will be receiving one infusion, every three weeks, 4 times. Then he will get new scans and they will assess them to see if there is any improvement. If the scans show anything less than the previous scans, he will continue with the clinical trial. As Mark explained to me, even in the second and third months of the clinical trial, patients were still showing signs of disease progression but they continued with the clinical trial anyway. It wasn't until the third and fourth months when doctors started seeing positive signs that the drug was working. That being said, if after 4 infusions Mark's scans aren't promising, there will still be hope!

Mark isn't sure if he’ll be able to work the day after he receives his infusions. Only a very small percentage of people in this trial have had a negative reaction immediately. Most of the serious, and possibly debilitating side effects don’t occur until the second month, Mark explained to me based on his extensive research and conversations with the doctors. The most common known side effects are gastronomical side effects, in the stomach and digestive track. 60% of people had side effects that effected these areas. These gastronomical side effects can be very serious, even life threatening if they're not treated correctly.

When Mark was there yesterday, a nurse sat down and went over with him a 26 page form that explained all of the different things that could possibly happen in this clinical trial. He literally signed his life away, acknowledging that he could die doing this trial. There have been a number of deaths involved in the clinical trials with this drug. When these clinical trials first being, the doctors figure out how much or how little a body can handle by testing it on people and many times they learn what is too much when someone dies as a result. “Those people are the real heroes and champions of this clinical trial stuff. The people who go through the trials first,” Mark said. “They are the most courageous people I can even begin to think about.” Some people might say the same thing about Mark.

Despite all the risks, the known and unknown side effects that could take place, Mark is very eager to start this clinical trial. He only has one fear: that the trial won't work. Although he is afraid of not having a positive outcome, he does have a very good feeling about this trial. He compares the Ippy clinical trial to the position he was in Back when first diagnosed in 2005. Although there were several routes he could have taken (chemotherapy, radiation, etc.), Mark only viewed one option as hopeful: the clinical trial. Five years later, he feels the same way about the Ippy Clinical Trial. "There are different options but the best option I can see is the new Ippy," Mark said. "I'm going to go for it and hope for the best."

Mark is really optimistic that this clinical trial won't be anything like the grueling, six months of the IL2 trial he underwent five years ago. "This clinical trial should be very much the opposite," he said. "This treatment is one infusion, every three weeks and even though there will be side effects, it won't be nearly as bad as the other one."

As soon as Mark has the tests completed and the first Ippy infusion is scheduled, I will be sure to let you know.

It is almost impossible not to be optimistic when the person who just signed their life away to start another clinical trial is so positive and actually excited to get started. I know I say it all the time, but he's amazing!

Mark's scans

Pat and I went home this weekend so we could help my mom and Mark do their annual woodcutting to stock up for the winter. And yes, when I say "we," I did actually help! I had the very important (and high pressure) job of operating the wood splitter. I'm happy to report that everyone still has their fingers and there were no injuries. I'm even happier to report that thanks to Mark's hard work and preparation for the woodcutting, in one day and with only 6 of us, we were able to cut enough wood to last them for the entire winter.

While we were there, my mom showed me some of the before and after scans of Mark's brain and lungs. The pictures do not paint an optimistic picture. I decided to scan two of the tumors in Mark's lungs to share with you the drastic changes that have taken place in just three short months.

Imagine that Mark is standing and facing you at your computer. His right shoulder is on the left of the screen and his left shoulder is on the right of your screen.

Tumor #1 in Mark's lungs (July & October)

Tumor #2 in Mark's lungs (July & October)

These are only two of several tumors Mark has in both his lungs and his brain. As I said, the pictures don't look good. I didn't post them to be a pessimist or make the situation seem hopeless, because we all have hope. We have to. But I thought you should see what we have seen so you understand the strength and prayers Mark needs!

You wouldn't know Mark has all of this going on in his body if you saw him. He worked his butt of on Friday and Saturday doing the woodcutting and probably outworked us all! He doesn't get short of breath and isn't in any pain. Let's hope he can keep up his strength to really fight these tumors with all he's got.

It's time to fight harder

Mark had some scans done last week and got the results back tonight. It certainly wasn't the news we were hoping for. The purpose of the scans was to determine whether or not the Temodar chemotherapy drug Mark has been taking since August was working. Unfortunately it is not. Mark has three new brain tumors, new tumors in his lungs and the existing tumors that showed up in his scans in July have gotten bigger. That is a lot of new activity in only three months. It shows that the cancer is very progressive and the treatment needs to be even more progressive.

For that reason, Mark is going to be starting a new clinical trial Ipilimumab, which you may or may not remember is what Mark really wanted to do in the first place. I have to say, his instincts have typically been right on when it comes to his courses of treatment.

Dr. Kendra's office will be contacting a doctor tomorrow who specializes in the Ipilimumab, or "Ippy" as my mom and Mark are calling it, and he will decide whether Mark should go ahead with Gamma Knife radiation on his brain tumors first or get started with the Ipilimumab clinical trial right away. I will definitely keep you updated after we hear from the "Ippy" doctor.

How are Mark's spirits, you might be wondering? Well despite the fact that he and my mom have now been in the James Cancer Center for almost four hours (and are currently locked in the parking lot as I type this because the gate is broken and they can't get out), Mark sounds extremely positive and optimistic.

"I'm excited to get started. I know it sounds silly to say that, but I wanted to do this six months ago," Mark said. Yes, that is a direct quote. He used the word "excited" when referencing starting another clinical trial. Amazing.

Mark is very encouraged by the information out there about Ipilimumab, especially as it pertains to patients who receive Ipilimumab after they have already had success with Interleukin 2 (IL2), which Mark has. Early studies of patients that have had IL2 and are now taking "Ippy" have had really good results.  While only 5 out of 100 patients respond to IL2 (and Mark was one of those 5), 30 out of 100 patients responded to "Ippy." The number increases even more for patients who have received IL2 and "Ippy."

"There are no guarantees but we are very hopeful," my mom said.

I have to be completely honest. When I get calls like this and hear the bad news from my mom first, before talking to Mark, I get this sinking feeling in the pit of my stomach wondering if this is going to be it. Is this going to be the point where Mark says, "no more," and quits fighting. And who could blame him? I can't tell you how comforted I was to receive his phone call this evening and hear the genuine, "I'm going to give this all I've got" attitude in his voice. He's nowhere close to giving up and I am so thankful for that.

Thanks, as always, for your love, support and prayers. I am touched each and every time I send out an update by your kind and encouraging words for my family. It means the world to us.

Some interesting Ipilimumab links:

http://www.medscape.com
http://knol.google.com
http://www.pharmastrategyblog.com

Marching on

Although he says, "it sucks" and it feels like his "stomach is full of cement," Mark is tolerating his chemo and was even able to go to work today. Not only did he go to work, but he made a special visit to my mom's work to bring her a nice cold drink because he knew she was working in 90 degree heat with no air conditioning. Can you believe that? Here he is trying to get himself through the day, feeling awful and yet, still thinking about ways he can improve my mom's day. It's truly unbelievable to me how unselfish this man is!

The symptoms Mark is feeling, in addition to the "cement stomach," are hot and cold chills and feeling like he has a fever. I'm sure this 90 degree heat is not helping his cause. He also mentioned he is starting to feel progressively worse with each day so Wednesday, after he takes his last dose of chemo on Tuesday night, may be his worst day of all. Hopefully he will be able to continue working so he can save his vacation and sick days for future treatments and doctors visits, but I am also hopeful that if his body tells him he needs to stay home for a day to recuperate, he will listen (yes, this is directed towards you, Mark). 

On a positive note, I am happy to report that Mark's insurance did cover both his anti-nausea medicine and his chemotherapy drug! He will have to pay the remaining $650 toward his $800 prescription deductible (yes, he has both an $800 prescription deductible and a nearly $6,000 medical deductible), but thanks to an extremely generous donation from two extremely wonderful people, that was taken care of for him! We are truly humbled and forever grateful for the generosity people have shown Mark since he embarked on this unfortunate journey more than five years ago. We will do our best to "pay it forward." This I can promise you!

Thanks for your continued thoughts and prayers as Mark continues Marching On.

It's almost chemo time

It's official. Mark is starting his chemotherapy on Friday evening. He will take 2 pills (at the same time) once a day for 5 days every 4 weeks. On Friday at 10 PM he will take the anti-nausea medicine and then at 11 PM he will take the 2 chemo pills. He will then go to sleep. As he explained it to me, "The pill will work while I'm sleeping and I'll wake up and feel like crap," he said while laughing. He expects to feel sick for the entire next week after he takes it and is hoping to be feeling back to 100% by September 10th when they leave for their well deserved and much needed 10 day vacation to New Mexico!

I will make sure to keep you updated about how Mark's body reacts to the chemotherapy this time around, and how his insurance handles both the chemotherapy drug and the equally important anti-nausea medication.

Last weekend, Pat and I had tickets to attend the Browns preseason game. We weren't able to attend and wanted to give the tickets to my mom and mark, who we knew would truly enjoy and appreciate the chance to go to the game (and are die hard Browns fans). It hasn't rained on a weekend in Cleveland in months. Wouldn't you know, it down poured the entire 3 hours they were at the game. Seriously, can they catch a break? But as we all know, you can't rain on Mark's parade! They were still very appreciative of the tickets and enjoyed the seats!

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!

The Hand that Gives You Roses

A few days ago I was talking to my mom on my drive home from work. It was just a normal conversation between a mother and daughter. I was complaining about my commutes in the snow to Cleveland and she was complaining about her commutes in the snow from Mansfield to Butler. While we were talking, she shared a story with me that I thought was worth passing along.

Earlier in the week, on one of the really snowy evenings, my mom was driving home from work. She was getting really irritated with the woman in front of her who was driving much slower than she would have liked. Eventually the woman pulled off the road and my mom was thrilled to be able to get around her. When she got home, my mom was telling the story to Mark. As soon as she mentioned the part about the woman pulling off the road, Mark started asking questions about where she was, why she pulled off the road, and so on, all while he's walking around looking for his keys and putting on his coat. As he was walking out the door, my mom asked him, "Where are you going?" He answered, "I'm going to find her and see if she needs help." He then got in his car and drove down their very steep and snow covered driveway to see if he could help this woman he didn't even know.

This is just one of many examples that show what a kind, caring and compassionate person my step-dad, Mark, really is. Everyone who knows him probably has a similar example of a way he has shown his kind and giving heart to someone (or something, he's all about helping the animals too!) in need. I can't help but think, in addition to the enormous fight Mark has put up against cancer, maybe there are bigger reasons that he is still here. Maybe God realizes that we need more people in the world like Mark. Perhaps God knows that each and every day Mark remains in this world it becomes a better place not only for those who know and love him, but also for those who don't.

In March, it will be 5 years since Mark was diagnosed with Stave IV Melanoma Skin Cancer and given less than 6 months to live. The odds were set terribly against him, and yet, miraculously, he's still here to bring in the new decade with us. Miraculous indeed.

A bit of fragrance always clings to the hand that gives you roses. - Chinese Proverb