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.