Round 1...

I know lots of you have been looking for an update about what yesterday was like regarding Brad's first chemo session. In a nutshell, it was a really long day. Although it was anticipated that Brad would be in the chair for about 7 1/2 hours, he was actually in it for almost 8 1/2 hours. I know, you say, what's an hour difference? LITERALLY, Brad was the second person in a chair for the day, got to see her leave as well as all others after her - yep, he closed down the joint.

I felt pretty emotionally strong going into the day, just nervous and although Brad has been telling everybody else that he wasn't nervous, I know the truth :) Unfortunately, my strength weakened as I watched Brad get prepped for his first injection. His nurse, Linda Hardin was AMAZING (that's her in the pic above)! Dr. Fintel, if you're reading along - she deserves a raise. I mean this from the bottom of my heart. Although I cried like a baby watching her get things ready, trying to hold it all in just made things worse. Eventually I just had to leave to let somebody else come and visit. Linda was so sweet - she snuck over to the hallway that I was exiting from and without saying a word just hugged me in the hallway for at least a minute. I sobbed uncontrollably - mind you, this was a woman I had only met 45 minutes prior and she became an instant best friend. She reassured me that Brad was on his way to recovery.

Brad initially received steroids and benadryl for a while and then switched over to the Rituxan antibody for a while. The Rituxan seems to be a pretty cool drug - it attaches itself directly to the bad cells in Brad's body and attacks them directly while not bothering the good cells in his body. Unfortunately, the chemotherapy cannot differentiate between the good and bad cells and just wipes everything out - thus, the extreme side effects. After the Rituxan, came a plethora of other drugs and chemotherapy, including one that is more commonly referred to as the "Red Devil" because of how dangerous it can be if it makes contact with the skin. Brad had to return to the cancer center today to receive a drug that will help his white blood cell count rise.

Last night was a long night. Although extremely exhausted, Brad was unable to sleep for any quality period of time and was very nauseous throughout most of the night. He kept a bucket nearby and thankfully didn't need to use it, but came close on several occasions. We spent most of the night tossing, turning and unfortunately, awake. The steroid Brad is taking gives him lots of energy, which works against the chemo he received. He will be taking the steroid for two more days and then we expect him to crash pretty hard into exhaustion. Brad has already lost his sense of taste in all drinks (except iced tea) and most of the food he ate throughout the day today. I foresee us needing to get an iced tea maker because of Brad's inability to quench his thirst - otherwise I think I may be in the kitchen making tea ALL the time! We're hoping that the tea continues to taste ok to him because he hasn't liked anything else, even coffee, which is normally one of his favorites.

Brad practically had a whole tailgating party at his first session. His Mom and Dad, twin brother Chad, oldest brother Todd and I were all there. He could only have two people in at a time, so we rotated throughout the day. At the end of the day when all other patients but one had left, all of us were able to go to the back to visit. That's all of us in the pic after Brad's long, long day was over.

You may notice that in Brad's pic, his shirt has been cut. Once everything was getting started, Brad realized his shirt was pulling on his port and it was kinda freaking him out. He asked me to cut his shirts to be more comfortable (which I of course, HATED doing, but lovingly obliged). Todd suggested that the shirt become Brad's "chemo shirt" and that each time he goes in for more chemo he wear it to his appointment and have whomever was there for the big day, sign and date it. It was a GREAT idea and we all loved it - you may see some of the signatures on his shirt, including Dr. Fintel and Nurse Hardin.

There are lots of other health scares going on with our family right now and I ask that you pray for Brad's Dad as he has several tests performed during the next two weeks. Our strength as a family is certainly being tested, but we will be ok. I also pray that the sleeping pills Brad will start taking tonight help him get a full, restful night of sleep (if he's one short for tonight I'll say in advance that I have no clue what happened to it!). Finally, we ask for prayers of strength for Avery. Yesterday he was such a strong little man, although very worried about his Dad. We took him out for breakfast before taking him to school to ease his mind and get one more moment of family time in since he went to spend the night with his mom last night. He got to see Brad for the first time today and was so visibly excited that we were home when he got off the school bus. Although Brad is tired, he made some time for Avery and they played a little game with mini football helmets together - great times for both!

A special thanks goes out to Jen for the delicious turkey, spinach lasagna that she prepared for us last night, to Mary and David who sent a beautiful handmade basket filled with Jolly Ranchers to help Brad get the yucky, metal taste out of his mouth and to our wonderful friends Chad and Cathy Kropff who delivered the wonderful gifts - thanks to each of you!

Love to all,

Sandy

Night Before The Storm

Well as you probably heard I will begin treatment in the morning for my issues with Bob. I just wanted to write a quick note of thanks to everyone who has been there mentally and physically with me and my family during these past 2 months. There's no way we could have gotten this far without each and everyone of you. After these 2 LONG months I still can not believe a jerk named Bob has now made me have holes in both arms and hands, in my lower back, and on my neck. I am pretty sure that the following days leading up to months will be very tough but we have faced tough times before and we have come out of it stronger and smarter then ever before.

I specially want to take a few seconds to say thanks to Sandy and Avery. I know that I am not looking forward to what is getting ready to happen to me but I know that there is no way I could get through this without a wonderful wife and beautiful son. I honestly believe I have the best family a man could ever ask for. So no matter what this chemo does to my mind or body I know my heart will never change. I love the both of you so much.

So with this little blog coming to an end I want to say sorry for my wife showing everyone a picture of my chest and it being cut up. Even though I have a chest like Magnum PI I'm not sure a lot of people want to see it. I am just happy I didn't have hemorrhoid surgery. I also want to let everyone in on a secret. So please don't tell Sandy I told you but she is very anal about proper grammar so after each blog I type she goes in and adds all the coma's and all the other crap that goes with the whole proper grammar thang. If she gets upset with me telling everyone about her secret and I know she won't because I ask you not tell her I will just blame it on the CHEMO BRAIN.

What A Crazy Week!

Well, we apologize that it has been so long since we have updated the blog, but there really hasn't been much happening other than waiting, until this week that is. On Monday, Brad had his first appointment with Dr. Fintel since our visit to Duke. The pathologists at Duke confirmed Brad's diagnosis of Follicular Lymphoma, which is good (a second opinion is always a good thing).

Brad's oldest brother Todd came home this past Sunday from Hawaii where he and his family live. Since he's home, Todd went with us to see Dr. Fintel and actually had his blood drawn while we were there to see whether he is a marrow match for Brad. Todd also really liked how down-to-earth Dr. Fintel is so it's good to see that even those who haven't met him before can easily see the connection Dr. Fintel makes with his patients.

While we were with Dr. Fintel, treatment plans were discussed and as mentioned in the last blog, Brad let him know that he wanted to move forward with the R-CHOP regimen. Dr. Fintel believes Brad will need 6-8 cycles of therapy, which will take place every 21 days beginning this coming Monday, February 22nd. Each 21 days when Brad goes to Blue Ridge Cancer Care, he will sit in the chemo chair for 7-7 1/2 hours and it is anticipated that he will feel pretty crummy the first several days of each cycle and then probably pretty exhausted after that.

In order to receive his chemo, Brad had two options - he could get it through an IV or through a chest port. Each option comes with some risks of either droplets of the chemo dripping onto the skin while trying to find a vein, which would burn and remove chunks of skin or through the port, the risk of it becoming infected. Brad chose the port option.

If you are unfamiliar with a chemo port, this is something that is inserted into the body while the patient is actively receiving treatment. Brad's is in his chest, which is one of the most common placements. Instead of the nursing staff having the need to search for veins during each appointment or procedure, injections, etc... are facilitated through the port. The pictures you see is what the actual port that was placed into Brad's chest looks like. The white spot on the top of the port is where injections are placed as a larger "target" for the staff to find. The port is connected through the white tube you see to the main artery leading to Brad's heart and is completely buried under the skin. Although it was kinda strange to ask for an unusable port to bring home, we thought this may be really helpful for Avery in understanding everything happening with Brad - it was so great the staff had one to give us!

Yesterday (Tuesday) Brad's port was installed. It was supposed to be a 3 hour procedure and we were told to arrive at 9am, although the instructions said to arrive 1/2 hour early. We didn't know that the 1/2 hour buffer was already built into the appointment time - oh well, at least we weren't late! The first few steps of getting checked in and looked over went quickly, until Brad was brought up to the room where he would get his IV and get prepped for surgery. We got into the room around 10am, where we were told Brad would be taken down shortly. Unfortunately, due to an emergency with another patient, Brad ended up having to wait for several hours (you can see from his pic that he was really happy about it). It was nearly 1:30 before Brad went into surgery and it broke my heart to see him being taken away. Although I know in my head these are the necessary steps to wellness, it doesn't always make everything feel better. Luckily, Todd and Brad's Mom were along for comic relief and then Dad came over while Brad was in surgery. I needed to stay with Brad for 24 hours due to the anesthesia that he received. We finally made it home around 4:45 last night.

Brad was in pretty rough shape after surgery, is extremely sore right now and really having a tough time. He has to sleep in a recliner because it's too painful for him to lay flat. He did remove his bandages tonight - yep, that's the pic at the top of the blog. Funny story, ok, not so funny story was that the staff performing his port placement thought he had received enough anesthesia when they made the first cut into his chest. That was until Brad said out of the blue, "ummm, I felt that." He said that the lights came on so quickly and he heard somebody say he needed more anesthesia. The next thing he heard them say was that he did really well during the surgery.

Brad was supposed to receive a MUGA scan today which tests his heart to make sure that it can handle the chemotherapy he will begin receiving next Monday (after all this, we sure hope it can!). When we got over to the hospital, we had unfortunately been misinformed about his appointment time and it's actually on Thursday, which means another trip to the hospital tomorrow. Oh well, we are getting used to it and it will only continue to become more a part of our regular routine.

I expect that now that things are really rolling, we will have many things to blog about, most of which I'm sure will focus on how Brad, Avery and I are doing, feeling, etc... Thanks for the continued messages of support and especially to both East Coast Metal Distributors and YMCA at Virginia Tech staff who continue to be such a source of comfort. Brad and I both are so fortunate to have such amazing employers, that even in a difficult economy, are finding ways to ease our mental struggles. Thank you, thank you, thank you.

Much love,
Sandy

My Life is Good

I hope all is well since the last time I did a blog. I am doing pretty good besides the fact we have a foot of snow now on top of the 6 inches we got last Saturday. I would like to find the global warming idiots and choke the living S#%T out of them. So as you can see by the way I started this blog I am about to go crazy. Let me go over my day so far. Remember that with my lymphoma I am supposed to be stress free. So let's jump into this stress free day. I woke up this morning checking the weather to see if I was going to close work, and wouldn't you know the snow had been coming down for hours and the roads looked bad. So, as the boss with a kid's heart I figured I should close and just stay home.

As I sat in the living room drinking my morning coffee and watching the beautiful snow fall Sandy was in the kitchen making a Peanut Butter Cheesecake. I said to myself "man life is good" about that time Avery woke up and said he wanted to go to his mom's house (and it wasn't even 6:30am). Even though I know my life is good I didn't want to get out of my PJ's and go trekking through the woods, I did and all I could think about was "why did I get out of my PJ's"? It's always hard dropping Avery off and not being able to see him for a couple days, but I understand that his mom has to have her weekends with Avery also.

So anyway, I am heading back home from dropping Avery off and I was thinking "man those PJ's sure are sounding good." about that time my cell phone rang. Yep, Sandy wanted to know whether we had anymore rock salt. In my 24 years of living, I am not sure I have ever run out of rock salt during the winter. Well, scratch that off my list of things not accomplished. My meeting with the PJ's had been pushed back about another 45 minutes but I still was saying "my life is good."

Well, well, well, this is where the stress free day begins. After my snowy adventure through Roanoke I finally made it home and into my PJ's. I decided to do a little work on the computer and eat the yummy meal my wife made for me. You guessed it peanut butter and jelly sandwiches with Cheetos (for breakfast). Man, I can already taste that cheesecake right now. Everything was great until the mailman came by with the literature from The Leukemia & Lymphoma Society. After reading through this info I received a lot of additional knowledge about my illness and it makes me feel a lot better going forward hoping to cure this disease.

Speaking of curing the disease, "this is where the stress comes" let me go over ALL of the side effects of the anticipated chemo I will be doing:

A. Redness/pain at the place of injection.
B. Blood in urine.
C. Dizziness, confusion, or agitation.
D. Fever, chills, sore throat, MISSED PERIODS, tiredness, and cough.
E. Joint pains, side or stomach pains, and swelling of feet or lower legs.
F. Shortness of breath.

G. Unusual bleeding or bruising, fast heartbeat, black stools, and painful urination.

OH I AIN'T DONE...

H. Sores in mouth and lips, swollen lips, and excessive thirst.
I. Unusually frequent urination, yellow eyes and skin, pinhead-sized red spots on skin or rash.
J. Darkening of skin and fingernails, loss of hair, nausea or vomiting, and diarrhea.
K. Redness of face, headache, sweating, and itching.

THESE ARE ONLY THE COMMON SIDE EFFECTS

It kinda sounds like one of the Viagra commercials. Anyway I am looking forward to the following weeks in getting this thing going but do I really have to have hair loss? Even with all the side effects "my life really is good" and I couldn't do it without my loving family and friends especially Sandy and Avery who I would do anything in this world for. With all that said, I look forward to blogging soon as long one of the side effects don't kick in, especially the "missed periods."

Our Visit to Duke's Transplant Center...

Yesterday was the day that we have been anticipating for the past several weeks as we traveled to Durham, NC to visit Duke's Adult Bone Marrow Transplant Center. I think in an earlier blog, I mistakenly wrote that it was a two hour drive, but I was wrong - it was three hours each way. It was quite the day, but we were fortunate that Brad's (twin) brother Chad, along with his Mom and Dad were all able to be part of the "experience."

I do use the word experience intentionally because this isn't something you emotionally prepare for. I mean, you think you're prepared for the visit, until you walk through the first set of doors where one is promptly greeted by a hand washing station that is used before physically entering the facility. Across from the hand washing station is a cabinet filled with face masks, that everybody must wear and then depending on whether you're coming to see somebody who is being treated, the extra precaution of rubber gloves and sanitary gowns to be worn over one's clothing. It was immediately sobering to have such strong visual reminders that of those visiting or being treated at the facility, many already have or will have in their future, tremendously diminished immune systems.

Because the weather here has been so icy/snowy, we left for our 10:30 appointment at 5:00am. Brad was supposed to be there at 9:30 to get his registration taken care of. Well, we arrived around 8:15am - yep, in PLENTY of time, even with the yucky weather. Because so many folks cancelled their appointments due to the weather, Brad was able to get in earlier, which was great! In all, it took us about 41/2 hours for the complete consultation.

We spent time with a Financial Counselor who outlined some of Brad's basic insurance coverage benefits regarding the transplant and indicated that should Brad choose Duke as his transplant site, he would have to "relocate" to Durham for at least 6 weeks, live within 5 miles of the hospital and have a 24 hour a day caregiver to live with him once he was moved into the hospital's preferred housing sites for their patients. It was another eye-opening experience. It wasn't that the information being shared was new to us, I think it was just more difficult to hear because it made things seem more real.

After meeting with the Financial Counselor, Brad was whisked away to have his vitals taken, etc... by a wonderful woman who immediately picked up on Brad's sense of humor. She made the comment to me that I must have my hands full with him being such a "firecracker." It doesn't matter where we are or what is happening, Brad's true personality always shines through. It's part of what I love about him so much!

After having the vitals done, Brad and I were brought to a small room where we would spend our remaining time of the appointment. We got to meet Judith, Brad's Clinical Social Worker, who spent time reviewing Brad's family history, his current support system, finding out his likes/dislikes, how he manages his stress, how he is handling his diagnosis, etc... She also asked many of the same questions of me. Yep, I cried. I know, for those who have been reading along you must be asking yourself, "does Sandy really spend this much time crying?" LOL...lately, yes! UGH.

Judith encouraged us to spend time putting together an advanced directive (living will) since that is not something we currently have in place. She also spent time talking to us about the financial stress that comes along with such a difficult diagnosis and a few resources we may be able to obtain through the Leukemia and Lymphoma Society. We talked about Avery and some of the behavioral challenges he has been having. Judith reassured us that his behavior is very consistent with children handling the diagnosis and that his reactions are oftentimes a child's way of dealing with his/her fears. This wasn't a shocker because of some of the information we have found on the American Cancer Society's website, but again, it was another confirmation for us.

After we finished with Judith, our next meeting was with Dr. Rizzieri, the big dog, and the person we were the most anxious to see with the hope that he would have some answers and a plan for us. Something that is cool is that in each of the rooms, there is a tape recorder so that when the Dr. comes in, the patient records all of the information the Dr. says since so much of it is difficult to retain. Each patient then leaves with a cassette tape with exactly what the Dr. said about the his/her diagnosis. I wonder how many patients still have easy access to a cassette player? Lucky for us, we're not the most technologically advanced family and still have two of them!

Dr. Rizzieri started off by saying that in Brad's case there are no immediate emergencies and that we have three goals to obtain in his treatment plan.
Goal 1: To control Brad's lymphoma.
Goal 2: To ensure a long quality of life for Brad
Goal 3: To maybe find a cure.

Goal 3 was the one I was fixated on. Maybe find a cure was confusing, because we were under the impression that a transplant was the only way to cure his lymphoma. Come to find out, a transplant is not always a cure. A transplant comes with so many risks that we hadn't really given thought to (at least in real conversation). There's always a fleeting thought or the disclaimer of potential death that grabs your attention when you spend time researching, but when the Dr. tells you that a little over 30% of patients don't make it through the transplant (when it is an autologous transplant - using the patient's own marrow), it really makes you rethink your life AND your treatment plan. Although the death rates are significantly lower (nearly cut in half) for those with an allogeneic transplant (using the marrow of a donor), the stats were scary and alarming.

Dr. Rizzieri spent time talking about 5 different options for therapy:
Option 1: Chemotherapy (there are about 7-8 types to choose from)
Option 2: Chemo + an antibody called Rituxan to help attack the cancer directly
Option 3: Using the Rituxan antibody alone (often good for patients with a poor quality of life)
Option 4: Radiation
Option 5: Bone Marrow Transplant

Although we were at Duke to obtain information about the transplant and Dr. Rizzieri said we could choose which option we wanted, we were encouraged to try other treatment methods before considering the transplant in order to evaluate how aggressive Brad's specific lymphoma is. Since he is currently listed as Stage 3 (which indicates where in his body the cancer is located - Stage 3 means it is above and below the diaphragm, but NOT in the marrow yet), but Grade 1 (how slow the cancer is developing). Brad currently has the most slow developing lymphoma. The big question is how long will it take Brad to relapse once he goes into remission from whatever treatment method is finally selected. If Brad relapses within 2 years, the Docs can identify that his cancer is more aggressive than what they know right now and either put him through a stronger chemotherapy or move forward with the transplant. Knowing that Brad will indeed require a transplant at some time in the future (this was also confirmed by Dr. Rizzieri), Brad's brothers are moving forward to determine whether or not they may be a family match, raising the opportunity for a successful transplant and reducing Brad's risks.

Brad has decided to move forward with the chemotherapy and antibody mixture. After speaking with Dr. Fintel yesterday afternoon, it currently looks like it will be a regimen known as R-CHOP. This is a common treatment method for follicular lymphoma and is quite aggressive. Brad and Dr. Fintel discussed him taking 6 rounds of chemo and each round is a 21 day cycle, which would take Brad into June/July time frame. Dr. Fintel heads out of town tomorrow and will not be back in the office until February 15th. Brad will see him that afternoon and we're expecting that chemo may start by the end of the month. The risks that Brad has been prepped for include: hair loss (not a big deal for Brad), vomiting, nausea, being tired, body numbness and at risk for infections.

I ask for your prayers not only for Brad and Avery right now, but for prayers of strength for me. Although I feel pretty "ok" most days, I'm really struggling with my feelings of being an inadequate employee, wife and "mom" (even if I am only a step-mom) right now. My emotions get the best of me often and I need all the strength I can find. I know it's in me, but I need to share it with Brad, Avery and the Y better than I have been, while also finding a personal balance for myself so that I can stay healthy through all of this.

I apologize that this is so lengthy today - there's just so much to share and I know several of you have been anxious to hear the update. Thanks for all the wonderful thoughts and messages you have been sending our way.

Love,
Sandy