What a Day!

(cemetary at Normandy, France)

What an emotion filled day! Yesterday Blaine and I were able to travel to Ascutney and visit the congregation we were a part of for 10 years. We were so very happy to see everyone and overwhelmed by the love we felt for them and from them. We miss them! We were then able to spend just a brief hour with most of my family. It was way too short. It was hard to leave both groups, but leaving was a must. We needed to get Blaine up to Dartmouth to get his counts checked. A plug for Dartmouth Hematology/Oncology staff - they made special arrangements to be sure Blaine could get what he needed on a weekend and still go to church and see family. We love them. We also got to see Carol who now works in the HISCU (sp?) unit. Such a treat. Blaine was not in need of platelets yesterday, though by no means were they great, but he did need two units of whole blood, and his whites had dropped again. He is neutrapenic once more. He wanted me to head home today to be with the kids. He'd be fine... he always says that. Just so you know, I am typing from Westford! The kids are doing fine with Aunt Shauna, Uncle Todd, Grandpa, cousins, and a ward that is taking special care of us there. We are so blessed. I will watch Blaine. Docs say that patients adjust to living with low blood counts and can't always tell when they're in trouble, even if they WERE the kind to admit it, which Blaine is usually not (serious understatement here). A second pair of eyes is needed to watch, and a second pair of hands to help. Who's he kidding? He knows he needs me. :)

We're so glad to see everyone we have and sad to have missed the ones who were sick or taking care of sickies. You know who you are! But we love you. Hope Mom and Brian are doing ok.

May we just say a very sincere thank you to those who gave the greatest measure of devotion to this nation. Our freedom isn't free. We also thank sincerely those who served and came home, those who are currently serving, including family, and those wounded warriors who need our care, as well as their families. God Bless America.

Sunday...

We are going to try our best to be at the Ascutney chapel on Sunday for church and then stay from 1:30 - 2:30 approximately. We would love to see anyone who can come and is not sick. We cannot risk exposing Blaine to anyone who could pass on germs, unfortunately. I am not sure we will be able to stay much past 2:30, so please don't come too late. We will update Saturday or Sunday and let everyone know if he is still able to be there. He's felt great the past couple of days.

New England is hot and humid! I love it. It feels good on my skin, and I love, love, love the green and trees. The Celtics are giving me a pain, however. The kids are all wishing they could be here. Hope to see you on Sunday.

Marleigh

New Frontiers in Medicine

So here's the deal. Blaine is severely cytopenic, meaning that his counts are very down, but not pan-cytopenic, meaning that all cell lines are down. His whites are recovering, though clearly not ideal. He is getting platelets and red blood cells today.

We met with Dr. Trico this morning. Blaine's Pet scan shows numerous new lesions, meaning progressive disease. They are not large, but they are present and growing. We knew the disease was progressing by the lesions that we could see on the outside. None of the lesions on the inside of his body are extramedullary, or outside the bone, which is good. Since his counts have not recovered, they cannot do any further chemo until it does. Chemo controls active disease, which he has, as well as affecting bone marrow. Thus the low counts. His platelet count needs to hit 100 before they can treat him again. They were 16 this morning, so pray for Blaine's blood counts to recover so they can treat the active myeloma! He responds to the chemo, but it always 'reseeds' as Dr. Tricot says.

The million dollar question is ... how to keep it from reseeding? Well the dedicated Dr. Tricot has a possible solution. There is a regimen of three common, non-chemo drugs that do NOT affect marrow function and therefore will not drop Blaine's blood counts, that in combination have been shown effective killing cancer stem cells in lab animals and test tubes. Just as healthy plasma cells develop from healthy stem cells, myeloma cells differentiate from defective stem cells. This regimen has not been tested on humans. Blaine will be the very first. Dani says, "He will boldly go where no human has gone before. Sweet!" They will also give carefully dosed and monitored amounts of chemo to control active disease, tapering it off as the stem cells deteriorate. He said this should take 6 weeks to 3 months. But since this has not been done on humans before, we will not know for sure until it gets underway.

To be very clear, this is Dr. Tricot's last line of defense. He says after this, he has nothing else. Blaine's counts are too fragile to try any trial chemo, and he would not qualify for most trials because he is post-transplant. So we are praying for that miracle. If this shows promise, then it has the potential to help many people. This is what Dr. Tricot has been working on. Half of his job is taking care of patients and the other half is looking for a cure. As stated, Blaine will be the first to try this approach.

We leave Monday for the east coast, but I am very unsure if we will be able to do any visiting. We will however, have to go to Dartmouth a time or two, so maybe we can see a few of you there, but this may be at very odd hours ... we hope Gaylin will be working during at least one of those visits. The kids would REALLY love to come as well, but alas, not this round.

That's the news today. Blaine is asleep while he gets his infusion, and I am here typing. It is a beautiful spring day, and we continue to count our blessings. While there are certainly trials, there is also hope. Hope springs eternal. We know in whom we have placed our trust, and we will continue to do so. Take care.

Bear in Heber

Blaine spent Monday night through Friday afternoon in the hospital. He spiked that fever, at first refused to go in (is anyone surprised?), went in growling, then spiked a good, high fever in-patient. He stopped growling. His blood counts were shot. He has required two units of whole blood and three units of platelets since Tuesday. His white counts were about as low as they can get without reading 0.0. His reds were up a little bit yesterday, as were his platelets. His whites only came up marginally, but were none-the-less up a hair. He was treated with high-dose IV antibiotics, and will continue that at home for the next week. His fevers are gone, but he is very neutrapenic, and therefore will stay home except to get his blood checked, until his counts recover. He had a bacterial infection in one of his ports. This came because his of the low white counts, which happens after high-dose chemo which he has recently had.

His face and mouth are exceedingly sore from radiation. He has been in a great deal of pain and could use your prayers. Needless to say, he is NOT getting on an airplane today. The plan is for us to fly out the 24th. Pray that we can! Or that the right things will happen. It will be a joy to see everyone we can, but what we can do is a big question mark right now. I will do what he needs, and that's it. If we can make it to NH, we will. If not, it's for very good reason. Remember we love you, and are DYING to see you, but can only do what health will allow.

We are so very grateful for all of you who have prayed and fasted for us, especially Blaine, and we gain great strength from it. We really do, it is no imagined thing. It is very real. We also thank all of you who send their love through comments on this blog. It also lifts us. We check almost daily to see what people say. We know we don't communicate back as well as we would like, and pray that you will understand. We hardly see or talk to anyone out west who isn't very close either! Thank you. We love you, and pray you will all have your needs met, and joy and laughter in every day.

Speaking of joy, congratulations to our very good friends, the Halley-Streeter family on the arrival of their new bundle of joy, Sarah! She looks beautiful. Take care.
Marleigh

Simple Math Equation

Here's Cancer/Chemo's version of a math problem:

Neutrapenia + High Fever = Hospital.

On Monday I had a fever spike at 102.7... I've been here at the Bone Marrow Transplant (BMT) inpatient unit since then. Not sure how long I'll stay, hopefully I go home tomorrow.

It's very common when your Bone Marrow gets blasted with chemo to have fevers, nobody seems to be overly concerned. Definitely better to safe than sorry. So the hospital it is.

I'd rather be home, but I sit here and work on my laptop, have my meals brought to me, have people clean up after me. I have a great view of the Salt Lake Valley. Not a horrible deal.

Blaine

Whew!

Just wanted to send out a quick update...

The tumor on the top of my head is virtually undetectable (I hope that means gone). The tumor on my chest is still there but has reduced in size almost to the point of being undetectable. The two tumors on my face are still there, but they have also gotten significantly smaller. Seems to be a very good sign.

I had my lab work drawn on Tuesday, and my 'Myeloma Markers' are holding steady, neither increasing nor decreasing. Again, good news.

You may also notice eyebrows and there's short, stubbly hair under the hat.

So the long and short of it is that between low dose chemo, high dose chemo and radiation, things are holding steady (MM markers) and/or improving (tumors). The high dose chemo takes my energy for a few days (but it is starting to rebound), makes me neutrapenic (compromised immune system-so I need to be very careful with germs), and could take my hair (not a big deal-I've gotten used the the 'bald is beautiful' concept). I'll take it!

Apologies to Vic St. Pierre for not running this through him first, but he had a comment on the last post that hit me right where it was intended and I couldn't agree more; 'near misses' don't count . So thanks Vic!

He said..
'You better not get discouraged!! Someone, somehow we have to keep a strong outlook. Nancy and I were in NY City eating dinner 3 blocks away when they tried to set off the bomb in Times Square on Saturday. They failed and we are still here!! The moral is near misses don't count. Trust that life will prevail. God is looking out for us.Vic'

BTW- I will be in New England for a about three weeks starting May 16th! I hope to be able to take some time on the weekends and go visiting. Marleigh may come out for a portion of that as well.

Blaine

Not Discouraged... anymore

Thanks for the kind words of encouragement. This blog has been a tremendous source of strength for us.

On Friday I had my heavy dose of Cytoxan, as well as my 6th session of Radiation, and I'm still on the lower doses of chemo. I'm sure I glow in the dark.

So, the bottom line is the tumors have started to decrease, slowly. Still hideous, but not quite so much. And my hair continues to grow, it looks rather fuzzy.

So cautiously optimistic is my outlook for this week.

Thanks again for all the support.

Blaine