Treatment Expectations

I have two expectations going into my treatment:

1.) Chemotherapy is administered in a Clockwork Orange style: doctors are going to strap me to a chair, tape back my eyelids and inject poison into my veins until I scream while white coats surrounding me furiously take notes in their laboratory books.

2.) The facilities at MGH resemble a spa-like resort where I'll sit atop the penthouse suite overlooking Boston's skyline while nurses and murses (male nurses) are waiting on me hand and foot.

Man + Power Port

It's 7:30 am and I'm back in the interventional radiology waiting room for an appointment to get a port placed. A port is a little device that sits under my skin above my right boobie (pictures to come later). Attached to this device is a catheter that goes through my main vein (right internal jugular Autumn says) to my heart so that they may deliver the medicine and treatments more quickly through a central vein, compared to delivering medicine through a peripheral vein in my arm. The port has a plastic pincushion type surface so that the nurses have a large target to aim for rather than using small needle pricks to my veins.

..gotta go, it's time for my procedure..

Port is placed and I'm now admitted upstairs. The procedure was performed under conscious sedation which I think I now prefer. There's a chance I"ll set off airport security alarms now so they gave me this big packet with cards I can carry and even one of those rubber "Livestrong" type bracelets that says "Power Port." It's all pretty funny. I also have a Power Port keychain which is up for grabs if anyone wants.

Here's another funny story. When placing the port they first had to shave my chest above my right boobie. I asked the tech who was shaving my chest what it looked like and he responded, "It looks like you started to shave your chest and then got distracted."

What Do You Mean It's Incurable?

Today we got the preliminary diagnosis from the second biopsy: it's between a liposarcoma or a synovial sarcoma. "The good news is that both of types of cancers are initially treated the same way and both types tend to respond very well to chemotherapy," says the Doctor. "The bad news is that at the present moment these diseases are incurable." These last words nobody wants to hear.

But what does this all mean? For starters, we are very close to a final diagnosis. In the next day, after completing the "FISH" analysis, we should know exactly which type of cancer we're dealing with. Although this doesn't change the treatment plan for now, a definitive diagnosis will allow us to hone in on the disease for future treatments, if necessary, allowing for the "sniper" approach. Also, there's a very good likelihood that the chemotherapy will shrink the tumor and systemically control the cancer, up to a 90 percent. This will stop the spread of the disease and reduce the pressures in my legs and spine that are causing me so much pain. This is all great news!

I've always heard of people "struggling with cancer their whole lives." I now understand and this is where "incurable" fits in. "Incurable" is different than "treatable." Everything is treatable: there are drugs and methods to alleviate and maintain the symptoms of the disease so that I can live a long and comfortable life. Unfortunately for now, there's a possibility that I will always have this disease, though dormant, inside my body, and I may have to go through further rounds of treatment later on.

Now this all being said, we're at the pinnacle of our times (as we always are), and there are some great drugs in their final stages of development to be released in the next six to nine months. These drugs can possibly lead to a "cure" or at least minimize the chances of the cancer relapsing. In addition to my treatment controlling the disease and alleviating the symptoms, my treatment is buying me time until one of these wonderful drugs comes out to cure my disease.

My uncle has been struggling with bladder cancer for 31 years, over which time he has had 24 surgical procedures. Last March his doctor suggested that he try a new treatment under investigation and six weeks later he is cured! He is 84 years old.

"Breathe in Hope, Breathe out Love."

Shout Out to my Hommies

I wanted to give a huge thanks to all the friends and family who have come forward to support my family and I through this unfortunate circumstance. You've all been so great not just to me, but to my wife (who will need just as much support as I will) and to our extended families both in Las Vegas and Dallas. We love you and sincerely thank you for all the calls, emails, texts and gifts.

This is a disease that Autumn and I, my parents, my mother in Vegas and sisters will be going through together. We will all continue to need your support and I thank you in advanced for the help. We're all sad, scared and every bit helps so keep doing whatever you've been doing; it means so much to us.

On a lighter note, the images I've posted are from two sets of friends that sent us cupcakes that I thought you'd all enjoy; As some of you may know, Autumn is quite a cupcake aficionado and I'll eat everything. The top picture is a package from Florida but baked and delivered in Boston sent by La La Linda and Scotty P, and the bottom picture is from Sprinkles of Los Angeles, baked on the west coast and FedEx'd by Tunafish and Prilsy Smalls. We absolutely loved (and are still lovin') both sets of cupcakes, but as you can see I don't think FedEx honestly observed the "This Side Up" sign on the box. Thank you all again!

Today was the first day this week that I didn't have any tests! What a relief! All the parents have left so Autumn and I have a quiet house again to digest everything. I caught up on ALL my emails (I think) so you'll all have to send more. Tests start up again tomorrow, an echo-cardiogram of the heart which should be cool.

Sperm Collecting, 30 Shanks to the Leg Won't Keep Me Down!

So I opted out of posting pictures of myself sperm collecting (though there were many), but that's how my day started out. We visited an oncologist and learned all about "fertility preservation." For all you young, strapping gentlemen out there I would definitely advise you do this now instead of later, especially if you plan on having children in the next 5-10 years. When you're sick counts are low, pain medications don't help the matter and what you'll read later in this posting makes for "not-so-sexy time." You can imagine what you need to do and if you can't do "it" the alternative is an extremely painful process which luckily I won't have to go through :), but it's nice to know there's an alternative.

Later in the day I had a second biopsy to gather samples from the primary site to hopefully better identify the type of sarcoma to devise a more pointed treatment plan. The biopsy didn't have a great outcome considering they were anticipating (10) samples from (1) location but instead took (30) samples from (3) locations, but we remain hopeful. Three out of the 30 samples were really good which will hopefully lead to a diagnosis.

"Breathe in hope, breath out love" - Bernie Siegel

Today's biopsy was a CT guided biopsy performed with local anesthetic which I thoroughly enjoyed. I wish I could have brought my phone to take pictures because both the procedure and the machine/technology were very neat, and because they only used local anesthetic I could watch the CT guidance screens, ask questions, and tell them when they were hitting nerves (not so enjoyable). Also, after the procedure I was completely clear-headed which was a nice change to my opiate coma last week. This was a huge difference compared to my original biopsy performed under conscious sedation, which was really a misnomer in my case because they kept injecting more drugs into me until I shut up. After going through both sedations I'm not sure if really have a preference but would definitely recommend local anesthetic at least once.

Final Report - Poorly Differentiated Sarcoma

The pathology report came back as a "poorly differentiated" Sarcoma. The cancer has spread to three places: a tumor in my left leg roughly the size of a ballpark hotdog, scattered lesions along the posterior lumbar spine concentrated around L5 and the edges of the sacrum, and a small marble sized mass in the lung. Of these three locations, the lesions along the spine seem to be of greatest concern as they are putting pressure on the nerves in my spinal canal and causing the leg pain. The marble in the lung appears to be an easy resection provided that there are not smaller marbles that didn't show through in the scan. Finally, with regards to the tumor in the leg, the hope is that the chemo / radiation will shrink the size of the tumor and allow for an easy removal of the soft tissue without interfering too much with the structures or veins in the leg.

So we don't really know what type of cancer I have which makes the treatment take more of a shotgun approach compared to the preferred sniper approach. I'm pretty numbed by all the news as it all seems so unbelievable. I had a little personal win and pushed back my chemo start date to next Tuesday which gives me one last weekend before I turn into a chemo science experiment.

A Weekend of Distractions

Saturday morning I had back-to-back MRI appointments to scan both lower extremities (knees down). The scans went well and I got a sweet pair of "patient" scrubs;" instead of being a solid color like blue or green they have thin vertical stripes so I feel like a jailbird. The MRI machine is really loud and makes weird humming and ticking noises. I always think the sounds would make an appropriate background to a techno or electronica song. I have the strangest dreams during MRI scans. I'll try to write one down, but know that you've been forewarned it'll be weird.

Later in the day we took an excursion to Portsmouth, NH to get some fresh air and distract the family with some good ole' fashion fun! Little Benson came with us and we had a fun time walking in and out of the little stores and exploring the town. We grabbed lunch along "the docks" facing the water and had traditional style lobster rolls. Delicious!

Today I wasn't supposed to do anything too strenuous before my PET Scan tomorrow so we went on a duck tour. I got to drive the duck!

Preliminary Results

Preliminary results of the biopsy are consistent with some type of cancer. This weekend and through the beginning of next week I have more scans and procedures scheduled to determine the exact type / kind of cancer. We're hoping for a final diagnosis no later than Tuesday which should outline the necessary treatment.

Treatments will start on Wednesday if all goes well and will likely include a combination of radiation and chemotherapy. The possibility of undergoing chemotherapy has still not hit me, but I'm definitely not excited. As you can imagine this has been an extremely taxing week for me but I do have my family here for support.

On a more positive note, the pain is COMPLETELY under control and I otherwise feel very well. I was discharged from the hospital and I have to say it's been very therapeutic to be home again!

Also, my mother-in-law arrived today to join the entourage which means so much to me. So now that's (2) Doctors, (1) Nurse and (1) Jewish Mother. I feel pretty special that I'm in such good hands. Below is a picture of my support team I added later (Benson is standing in for Autumn).

20000 "Lesions" Under the Sea

After many long days of MRIs, Bone Scans and Ultrasounds, the doctors have changed the wording of their diagnosis from "mass" to "lesions" in my spine. It appears to be some type of cancer but we need to continue the investigation. The lesions were biopsied today and we should be getting some answers soon.

Waiting is definitely nerve wrecking, but it's great to have the support of my beautiful wife and my parents by my bedside. The doctors / nurses have been keeping me very comfortable and generally doped up to pass the time. I feel like I've been sleeping for 3 days straight.

We feel confident that the lesions are treatable and the biopsy will tell us how.

Morphine & Plot Twist

Writhing in pain I begged the ER physicians to stop the pain; 12 mg of Morphine (max dose) didn't even come close. Over the past weekend I had been taking the pain medication my PCP prescribed for my DVT to take the edge off this new ailment and the ER physicians questioned me like they would a pain meds junkie. I was in so much pain I could barely look at or talk to them. After watching me struggle for a good hour or so they put me on a Dilaudid drip, and finally after a week of pain I found solace.

I spent the day at the hospital while the doctors performed the standard workup for a herniated disc with sciatica. Instead, the MRI revealed some sort of abnormal mass. The doctors didn't know what that meant but decided to keep me here for a couple of days while they run more tests.

To further illustrate the gravity of this event, my parents booked the first flight to Boston to be here with me (mind you my Dad returned to Dallas from Montreal this morning). Hopefully we'll be able to figure out the issue and get some resolve quickly. I appreciate everyone's support and will keep you updated.

Grand Prix to the ER

Consulting my team of doctors (wife and father) it seemed like a classic L4-L5 herniation with right leg sciatica. Having flashbacks from the previous two days and to my doctors' recommendations, I watched the Grand Prix from my hotel room. That was pretty depressing, but my body was physically done with the abuse.

The day was filled with the constant deep pain that seemed to come in waves like contractions which were extremely painful (required holding my breath) followed by a brief lapse of comfort. During these "waves of pain" I started to appreciate the recommendation to stay in the hotel room and rest.

After the race, whereas we'd normally explore more of the town and finish the weekend with a nice steak dinner, Autumn and I instead packed up the car and prepared for our departure. I resumed my position stretched out in the back seat with my legs elevated, prepared to leave Montreal just as I came.

We humored the idea of driving home and contacting my primary care physician the next morning; however, as the contractions soon transformed into a tsunami of constant pain, it became obvious that the emergency room was the only clear choice.

Montreal and Formula One Qualifying

Over the weekend Autumn, my Father and I had been planning all year to go the Formula One races in Montreal. Although I was looking forward to the event, I was dreading the drive from Boston to Montreal due to this past week's experiences.

I took PTO on Friday, so Thursday night we packed up the car and drove to the Canadian Border and stayed in a hotel on the US side so that we could wake up early and catch the 1:00 pm Friday Practice Session. The drive Thursday night was more or less painless. Autumn drove the car, and I devised a nice pillow cushion arrangement which relieved most of the "driving-related" pains I had previously experienced.

The next morning I wasn't so lucky, and I couldn't get comfortable. We had to pull over and I had to stretch out in the back seat, laying flat on my back with my legs elevated. This is how I entered Montreal.

During the day, we went to the track and had a great time walking around the park that surrounds the race track, watching the Practice Session and looking at all the event vendors. In the evening we explored the carnival-like atmosphere that engulfs the city during the races and walked around the city. All this time I was standing and, though my feet were tired / right leg numb, I wasn't in any severe pain.

Dinner was a different story and was accompanied with a healthy serving of excruciating pain. Throughout the meal I had a 3-8 minute window where I could sit down and rest / eat my meal, and the rest of the time was spent standing or walking around the restaurant in attempts to regain feeling in my leg. Need-less-to-say, after we settled the bill we quickly returned to the hotel.

The next day we returned to the track to watch the Qualifying Session and my pain followed a similar trend: bearable while on my feet and a sit/stand/walk technique on the bleachers to manage the pain. Luckily the Qualifying Session is in three short chunks of time: Q1 - 20 minutes, Q2 - 15 minutes then Q3 - 10 minutes, all of which were bearable.

That night at dinner, after humoring my sit/stand/walk technique for 20 minutes, I retired to the hotel room from the intense pain before appetizers were served.

In the Beginning

It started Sunday night (6/6) with a flash of pain in my right calf. Being used to random pains in my body every since my DVT last December, I added the pain to the on-going list of things to discuss with my primary care physician at my monthly appointment.

The next day I got into my car to drive to work and my right leg went numb from the knee down. As I continued my half hour commute to work the numbness turned into a deep pain and I raced to the office so that I could get out of my car. Back on my feet again the pain soon subsided.

For the next two days I traveled to and worked in Ohio with little incident. My back and body was stiff, but it had been for the past several weeks. On a morning drive Wednesday I felt a similar pain to Monday's event but to a lesser degree; thought during my morning meetings I had to stand up to relieve the pain. I returned home that evening. The pain seemed to be only related to sitting in a car; I have no problems sitting in an airplane.

Back home again, my drive to work Thursday was extremely painful. I had the same numbness pain; however it took several hours to subside. At my desk I had to constantly adjust myself, getting up to stretch my back and even sitting on the floor while I was on the phone.