Discouraged

I'm Discouraged. Not sure what more to write. The tumors have not subsided, and possibly continue to grow. The ones on my face are being blasted with Chemo AND Radiation, but they're still there. Tomorrow I'm getting a higher dose of Cytoxan to try to combat it. We'll see how it goes.

Some good news... my hair has started to grow back.

The bad news... higher doses of Cytoxan normally take my hair. Oh well... if it goes then it was good while it lasted.

I'll be in touch.

Blaine

Radiation

April 23, 2010
As the previous post mentioned, I have a total of four Plasma Cytomas; one on the top of my head, one on my upper lip, one on the inside of my mouth and one on my chest. The plan is to radiate the two on my face because they are without doubt the most difficult and uncomfortable (hideous is a better word). The other two will be left as a measure of the effectiveness of the Chemo. If they shrink and go away, that is good news. It means this mixture of Chemo is working.

First day of Radiation; piece of cake. It took longer to park the car than the treatment. No pain, no discomfort. Like I said- piece of cake.

I'm going to receive a total of eight radiation treatments, day one is in the books. Seven to go.

Blaine

Prayers

Just in case you missed it, let us restate.

This Sunday our family will be fasting for Blaine. We will miss two meals, or not eat or drink for 24 hours. We will dedicate our prayers to his healing, or asking God to grant us that miracle, if it be His will. We are also very concerned for a young wife and mother who is listed as a 'chronic cancer' patient with Hodgkins Lymphoma. She has been battling for years, and is under a constant struggle to live and maintain an acceptable quality of life that allows her to parent her son. She has life threatening disease that is only controlled by life threatening side effects. Her name is Hillary. If you feel to add her to your prayers as well, I know it will be deeply appreciated. God speed and God bless each of you.

Ben Hur...

It’s 3:30 am, Saturday morning. Guess what chemo drug I’m back on? Dextamethasone; which keeps me from sleeping at night. Seemed like a good time for an update (although I’m not going to actually post this until Sunday).

To quote a line from the movie Ben Hur (and Bryson Cook); Pontius Pilate made the statement that “A grown man knows the world he lives in.” To me this means that men and women need to recognize their environment and what works or doesn’t work for them; things that are good and bad, actions and reactions/consequences, what their responsibilities are for themselves, their families, their employers/employees, no rose colored glasses, they see the world as it is.

It’s a great line. To borrow it and apply it a different way; “Most Cancer Patients understand the world they live in”. For most of us, the reality is, in addition to the physical issues (the pain, exhaustion, weight loss, nausea, etc) that there is always a fair amount of anxiety, fear, uncertainty, inconvenience, and anger (to name a few). For example, our appointment today that started at 7:30 am (leaving home at 6:30 am) that we thought would be a couple of hours-tops, turned into an all day event- leaving at 4 pm (arriving home at 5 pm). Fairly common.

The worse part is the uncertainty and anxiety. I’ve known in my heart of hearts that I wouldn’t be in remission long, my Cancer has been too aggressive. At Dartmouth I went from remission to relapse in the blink of an eye. Things have been better here in Utah. However, after my last round of chemo I got sick; a head cold developed into a mild pneumonia. It knocked me down for a couple of weeks. But I’ve shaken both. However, a couple of weeks ago I started to get sores on my head, three of them to be precise. One on the top of my head, one on my upper lip (hideously ugly- imagine the biggest, ugliest wart you’ve ever seen. That’s what it looks like), and one on the inside of my mouth, on my upper gum. I thought they were ‘side effects’ from all the drugs I’m on. Well, again because ‘I know the world I live in- the Cancer world’, I thought that like most of the side effects I’ve had that they would come and go. I had been waiting for these to go- but they didn’t.

Monday morning we called our Oncologist who immediately called the Dermatologist to get an appointment. At 2pm on Monday I was in their office having a biopsy on the bump/sore on the top of my head. We discover another bump on the right side of my chest, next to my single lumen port. Very discouraging.

We were scheduled for Re-Staging on Wednesday (Labs, X-ray, Neurology appointments, the dreaded bone marrow biopsy, and the equally dreaded MRI). We were also told we would receive the results of the biopsy on my head. The results came in, and it wasn’t good. The bumps/sores are Plasma Cytomas… tumors like the one that lodged itself into my vertebrae, compressing my spine. Obviously, the cancer is back. Again, very discouraging.

So what does this mean? It means that, once again I have cancer in my bone marrow. It means that, at the moment, my very aggressive Cancer is winning. (On the bright side, the biopsy showed very small amounts of cancer in my bone marrow. It also showed that the lesions on my bones had actually reduced. So that was good news.)

It also means that my chemo routine changes again. The approach has been to hit me with large doses of chemo and then let me recover over six week intervals. Then hit me with another large dose and let me recover. The new approach is to keep me on smaller doses of chemo all the time. I will take three of the four chemo medications orally (Cytoxan, Dextamethasone, and Etoposide). The final chemo is Velcade that I take through an infusion on Fridays.

Here’s the rub… and if I’ve bummed you out too much already, this would be a good place to stop reading. Go listen to happy music or watch a Disney movie:).

Chemo makes you very weak, it lowers your immune system, makes you very susceptible to catching something that is difficult to recover from.
But even worse… generally, Cancer is smart (and my Cancer has proven to be very smart). It quickly learns how to combat or get around the new chemo. It figures things out and finds new ways to grow. Hopefully it takes it a long, long time to catch on this time. Another Miracle would be nice.

Now the $64,000 dollar question (actually with inflation who knows what it’s worth now?)…… Have I given up?

Complicated answer. The short answer is heck no. I have a wife to take care of and kids to raise. I have responsibilities to them (and the church) that I plan to fulfill. That I need to fulfill. Throughout this whole ordeal I have been full of faith. I’ve always felt/believed that I was going to win. I now know that in many ways I’ve already won. I have a great wife and super great kids. They are strong! Whatever happens, they will survive and thrive. I am still full of faith that my Heavenly Father loves me and knows what is best for our family. We are at peace with that. I’m praying that I have many good years ahead of me (regardless of the medical prognosis). But again I know that I’m in Gods hands and that He knows what He’s doing.

Rest assured, I am going to continue to fight this thing has hard as I can. I’m not giving up! I’ll certainly do my part to beat it.

Again, We Cancer Patients know the world we live in and the struggles that exist in that world. I can honestly say that Cancer Patients are the toughest group of people you’ll ever meet. Football players… wimps in comparison. We tread onto the ledge of death on a regular basis and with great medical teams, most of us fight our way back.

One of my favorite Old Testament stories is that of Moses when he led the children of Israel out of Egypt. They faced impossible odds that the children of Israel just couldn't quite see through, they failed to grasp the big picture, they lacked sufficient faith. When Moses led them to the Red Sea, they were convinced he had led them to their death. Hear Moses’ response: “And Moses said unto the people, Fear ye not, stand still, and see the salvation of the Lord, which he will shew to you to day: for the Egyptians whom ye have seen to day, ye shall see them again no more for ever. The Lord shall fight for you, and ye shall hold your peace.

Our family will be fasting this next Sunday. Join us if you can.

I’m going to end this very somber, depressing blog. Sorry to bring you down.

On a funny note, I was in Huntsman’s gift shop today and got a kick out of some of the t-shirts for breast cancer. I’ll share a couple:
• ‘Of COURSE there fake… The real ones tried to kill me!’
• ‘Cancer has taken both my breasts, but at least men look me in the eyes now.’

Take Care, We love all of you.

Blaine

Yeah, right!

Blaine has decided that I am his 'Mother Hen.' Shall I tell you why? I said, 'You have a fever, and you're coughing up stuff.' He said, 'It's just too many blankets and a cold, I'm fine.' I called Huntsman, and they had him come in. He was NOT happy with me, but he went in, and guess what? He has pneumonia! Relax, it's not the scary, in the hospital kind. It's the 'he caught a bug that filled his sinuses, and got a secondary infection in his lungs that is responding to antibiotics nicely' kind. The fever has subsided, and the coughing has lessened. He's totally wiped out, but that's normal with pneumonia.

With chemo patients, there comes a point where returns are diminishing, in that blood counts don't recover as quickly, the body's reserves begin to be depleted, and infections come more easily. I think Blaine is there. His counts have been much slower to recover, and still haven't completely come back from the last round of VD-PACE, which is by the way, very heavy chemo. Therefore, the third round of consolidation VD-PACE which was scheduled for this past Friday was canceled. Restaging was also canceled. They are going to monitor his counts and start again after they have recovered. I think we will now be moving away from consolidation chemo to maintenance chemo, as that is what his body is indicating he can handle. We will speak to Dr. Tricot after his counts recover and they restage. So you understand, the docs pushed him very hard because he could take it, and knew that this was probable. It is not an unexpected or fearful scenario to them. They pushed him harder than most knowing that they could pull back if needed.

Kyle underwent a colonoscopy and endoscopy recently, and is now on medication that finally seems to be helping him with the almost constant pain he has had to live with lately. He has some serious inflammation in his bowel and sores in his stomach that seem to be responding quite nicely to medication. We have also altered his diet. He seems to be improving quite a bit. Phew!

Everyone else is fine. Dani is still working very hard, and having some fun as well, Josh is playing baseball and getting excited to go to Texas to work for the summer then off to Laie, Hawaii for school in the fall. He will be 18 in just a few weeks. Where has our time gone? Alexis is taking a sports season off, and is relaxed and seems happy. No major projects going on right now, and it looks good on her. She loved Disneyland with the Band/Choir/Theatre group.

I am breathing a little easier, though still working and on my guard. It has been over a year since Blaine started chemo, and many, many changes have occurred since he started having symptoms. I am getting used to the west again, as it is a big adjustment. It is good, just different. We look forward to warmer weather, gardens, fishing, etc. Hoping to see our dog soon, we miss her!

We will update again when his counts recover and he is restaged. For now, please keep him and Kyle in your prayers. We are as always, so very grateful for those. Take care
Marleigh

Hey everyone!

So I took some pictures from my dad's first round of backpack-chemo. We have lovingly dubbed the bag "Chuck" because it makes my dad look like some sort of secret agent when he wears it. Although these pictures are a little bit outdated, I thought you might be interested.

Enjoy.


At Josh's basketball game last Saturday (Dad was still neutropenic.)



PS: sorry the pictures are a little grainy, my camera is kind of dying on me. It's lived a good little life, served me well..(hint hint my birthday is in JULY...jk).

Oh yeah, and I can't help but show this one off:
(it's Josh cutting down his part of the net from the Championship game)



Hope all is well with you and yours.

Brags and Updates

(Photo from last year, but I like it!)

Joshua's basketball team just won the State Championship! They have all worked very hard, and been unstoppable. Their record was 22-1, the loss coming from a team in a higher division. The only other games that were even close came in the playoffs, and two of those were great games on both sides. The final game wasn't much of a contest. Wasatch kept the other team to 8 points in the first half. Not bad! The team stayed up very late celebrating. Josh has very little voice left from all the yelling they did. Now he has a long break between seasons. That is if you consider one day between the final basketball game and the first day of baseball tryouts long... that's why they do this when they are young.

Joshua also has some other exciting news - he will be attending BYU-Hawaii this fall. Yep, he gets to go to school where the head librarian is also the surfing instructor. According to US News and World Report, BYU-H is the most diverse campus in the nation. They draw heavily from Polynesia and the Pacific Rim, as well as other areas of the world. Part of the stated mission of BYU-H reads:

"Preparing men and women with the intercultural and leadership skills necessary to promote world peace and international brotherhood, to address world problems, and to be a righteous influence in families, professions, civic responsibilities, social affiliations, and the Church."

It has the international business program Josh is looking for with the above as part of the school's stated mission plan. That it's in Hawaii isn't bad either! It has been a wonder to watch the class and composure Josh has shown this past year as he gave up his senior year and all that goes with it in New Hampshire to come here and try to be involved in programs that were WELL established, with athletes that were not only talented but very connected to each other as boys who have played together for years tend to be. He had been a starter and one of the leading scorers his Junior year on Varsity, to come here as a guy on the outside trying to break in with little chance as a senior to make teams. He made the basketball team, but spent most of his time on the bench. He never complained, ever. He stuck it out, and found joy in practice and in the team's success, and worked his heart out. He celebrated as much as any starter. What a great group of young men. I am so grateful for the amount of class Josh has shown in this. He is trying out for baseball, and has thrown some bull pen sessions. I understand that they need pitchers, so baseball may provide more playing time. We'll see. He has also worked very hard academically, which is evidenced by his acceptance to BYU-H. All in all, he is ready to fly, and has shown himself capable, able, willing, and hard working. His parents are very proud.

Other news:
Blaine is in Massachusetts this week for work, though he will not be able to get up to New Hampshire this time around. He would very much like to be able to do that, and will try again on the next trip. He has had his second round of consolidation chemo, and seems to be recovering a little faster this time than the last. They removed one drug from the mix that he just didn't tolerate well. He has two more rounds to go between now and about the first of June, then a year of maintenance chemo, which we hope won't be so intensive. We wait to find out.

Marleigh is teaching music at Heber Valley Elementary, part time, and teaching voice students, also part time.

Alexis is getting ready for a band/choir/theatre trip to Disney Land on Thursday. Her basketball team finished and she is deciding whether or not to do track, as the state of Utah does not have triple jump, her best event, at the high school level. She is sooooo not happy about that. She has fit in nicely here, as she makes friends easily wherever she goes. Did I forget to brag about her recent test scores? In English, she scored - get this - in the 100th percentile! She did well in everything else also, but her English scores were phenomenal. Thank you, Linda Ferland! (English teacher at Vilas Middle School)

Dani is working very hard. She has a part time job in the evenings and a full class load. She is working very hard to keep up those good grades. She feels that her French has improved even since returning from Europe because she is reading and writing the language a great deal. She is even finding time for some social life again. Hurray!

Kyle had his first all A's and B's report card. Great job! He just finished his basketball season, and is going to play spring basketball as well. His team is also very good, with an 8-3 record. He has had his own health challenges, and docs are running tests to try and get to the bottom of it. Will update, but nothing too scary, just problematic.

We are adjusting to our new home, and looking forward to spring. Hope the flowers blossom soon wherever you may be.