31 August 2009

A New Week

New week and new post.

The visit with the pulmonologist went well. He thought Ford looked very good (he really does look amazingly well). There is not anything that can change with the blood thinners until Ford has his tests done in October. If all is still looking good, then there will be discussion of switching to Coumadin (taken orally), remaining on Lovenox (daily injections), or not taking anything. Dr. Alward believes that the chemo was the main cause of the double pulmonary embolisms. This is consistent with our understanding of what happens with someone who has Factor V Leiden. There is usually something that perpetuates the blood clots. They rarely just happen. That is the news there.

Today was the first day that Ford has been back on his trike (three-wheeled recumbent bike). He has looked forward to being able to getting back to riding. Today is also the first day of regular classes at BYU. He was able to time it so that he missed the first period rush and breezed right in to work. Yeah!

One of the speakers in our Ward Sacrament meeting yesterday spoke on change and coping (excellent talk Brother S. Thanks for the stories and the insight). This is definitely a season for change with twenty days or less before our second grandbaby arrives, and in a week, our third daughter is back to school at BYU-I. We have enjoyed having her home for the summer. We will miss her not being here, yet are excited for the new adventures that await her. With the progress Ford is making getting back into his work and areas of interest, it will be time for me to work on many things that need attention. One of the things that I have tried to learn from our experiences this year is to take one day at a time and to enjoy and appreciate life. And, so, we will see what each new day brings and try to learn what the Lord may have in store for us.

How blessed we are.

26 August 2009

New News

No blog for a while and now, two blogs in one day...

We made inquiries to the Huntsman "team" as to what the written lab results were. The response came back that the cancer in Ford's stomach that was found at the last endoscopy is the MALT lymphoma (the low grade, low progressing, non-curable lymphoma) and not the Diffuse Large B Cell lymphoma. If all goes well, PET scan and EGD will be repeated before Ford's October appointment.

HOORAY!! HOORAY!! Thank all you all (Southern speak meaning: everyone) for love, support, & prayers!!

Keeping Touch

We haven't updated for a while because, as far as news about Ford's status medically, we do not know anything new. We can only hope that "no news is good news."

Some read our blog to be updated on Ford's lymphoma situation. We have been reminded that some read our blog to keep up on what is going on in general. So, this blog is for a general update.

Ford returned to work full-time last week at BYU. He has done well. He really does look good. His hair is coming back nicely and not all gray. There are dark areas here and there.

He has been building up his stamina. Every evening this past week, he has taken a long walk around the neighborhood. This seems to also have a calming effect that has allowed him to sleep a bit better.

On Saturdays, he has returned to his assignment at the Provo Temple. He goes every week hoping that he can stay for the full shift, but has been patient at taking it one step at a time and building up his time. He has a wonderful supervisor that keeps a loving eye on him. Ford is getting more skillful at finding things that need to be done at about the time Brother H. would like him to go home. (-:

Ford weight is remaining stable. He weighs more than he would like, but he looks good with the extra few pounds, not as gaunt (just gallant).

For a little bit, Ford was having a slight slow down processing things. That may have been due to lack of sleep, the chemo, or who-knows-what, but he is picking back up quite nicely.

Our second daughter is within 4 weeks of her due date. Our first daughter found out that baby #2,
due in January, is a girl. Daughter #3 will be returning to school at BYU-I in a few weeks.

For those of you that are not in Utah, it seems that Fall is creeping in early this year. The past several days have been beautiful, but cooling off. I suppose that the leaves on the mountains will soon be changing their colors.

Today Ford has an appointment with the pulmonologist here in Provo. It is a check up and a chance to touch base concerning his blood thinning meds. Without any word from the Huntsman, there is nothing that can really change at this point.

Our best wishes go out to you all whether near of far. Take care.

10 August 2009

Some More Info

In the previous blog post, we told about the reprieve. After the doctor called, we decided to wait until the news was in writing before we talked about what was going on. It has been such an emotional roller coaster.

However, many people have asked so here is what little we know...

The pathologist as the HCI told Dr. Glenn over the phone that when they received the slides from the endoscopy and had examined them, that what they thought they were looking at was the MALT lymphoma (the slow progressing one) and not more of the Diffuse Large B Cell lymphoma
(the aggressive, potentially fatal one).

Dr. Glenn cautioned us that sometimes the pathologist will surprise her and the written report will be different than the oral report. For this reason we need to make sure before we get too excited.

The only "for sure" is that because of the doubt of which lymphoma it is that is showing up in Ford's stomach, all of the procedures scheduled this week, i.e. central line placement, three day RICE chemo treatment, and the Neulasta shot on the fourth day, have been postponed. Dr. Glenn started to say, "...so we will wipe those off the agenda," but then stopped and said, "not wipe off, just put on the back burner."

She told us that they were also ordering all the original slides done for the original diagnosis and staging.

We are very relieved at the reprieve. It is what I imagine a stay of execution may feel like. But then Ford is continually telling everyone that I am taking this harder than he is. Ford is taking all in stride.

We are not sure when we will hear more about the diagnosis.

In the conversation with Dr. Glenn, it was asked if she wanted Ford to repeat the endoscopy. She said yes, but that she wanted to wait at least two months because that would give her a better picture of what is going on.

That is what we know and don't know.


06 August 2009

Reprieve

"Hope . . . is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear."

Dieter F. Uchtdorf, "The Infinite Power of Hope,"Ensign, Nov. 2008, 22.


Early this evening Ford received a phone call from Dr. Glenn, the oncologist, at the HCI. The gist of the conversation was that all procedures scheduled for next week have been postponed until further notice.

Once again, we will post more when we know more.

For now, we are ecstatic with the reprieve!

Please keep Ford in your prayers, that all those concerned with his care will be blessed to be precise and accurate in their research and their determinations.

05 August 2009

The Upcoming Schedule of New Treatment

"We can't predict all the struggles and storms in life, not even the ones just around the next corner, but as persons of faith and hope, we know beyond the shadow of any doubt that the gospel of Jesus Christ is true and the best is yet to come."

Elder L. Tom Perry


We have received a tentative schedule, however not much of any other information.

Ford will have a central line placed on Monday. This is a catheter that runs through a central vein directly into the heart. The purpose of the central line is to simplify many of the procedures that need to be done. We have been told that the catheter will connect to three lines that will be accessible for blood draws, infusions, and other necessary things. These will be covered at all times (when not in use) so they do not irritate Ford's chest. He calls it "becoming Borg" (a Star Trek reference). I have the opportunity to learn to change dressings and flush the lines so they do not become clogged. (Do they have an age limit to nursing school?) Every medical procedure has its risks. This is just one of the many hurdles that Ford will need to overcome in this whole mess of treatment. The central line can be removed after all the treatment is completed.

Bright and early Tuesday morning is the appointment to meet with the
HCI oncologist, Dr. Glenn. We are planning that the chemo will begin after that.

One of the medications Ford will receive on the first day is
Rituximab. This is referred to as a designer drug, because it targets a specific enzyme found on the surface of B cells that can be a flag for lymphoma.

He had this in the first round of chemo (R-CHOP). That is what the R stands for. On the first infusion, the
Rituximab must be administered very slowly in order to watch for allergic reactions. It takes several hours. Even though he has had this drug before, we were told that the first infusion of this new series would have to start over. This means that on the Tuesday, it will take approximately six hours or so for the treatment. Then we will stay overnight in SLC (backdoor to the emergency services at the U of U Medical Center). On Wednesday, we call the Huntsman Hospital to find out when Ford checks in. Then it is a thirty-six hour stay with a IV drip of the other drugs. On Thursday afternoon, Ford should be released. On Friday, approximately 24 hours after the end of chemo, he goes back for the Neulasta shot. That will complete the first round of the new series.

If all goes well, we do it all again two weeks after that, with the first day of round 2 on the 25
th of August.

Ford was told that this is a harder treatment with more powerful drugs. Because he has undergone chemo previously, it will be harder.

How hard is harder than harder? My mind cannot even comprehend what that might mean. Ultimately I take it to mean one day and one step at a time.

Once again our prayers will be focusing on asking that the drugs used in the treatment hit the cancer, but that every bit, every inch, every ounce of what is healthy in Ford's body be protected and preserved from any adverse effects. Please, whatever your belief or values may be, join us in pleading for that blessing for Ford.

We have soaked in the warmth of the associations we have been able to enjoy the past few weeks. How wonderful it has been to be able to attend Church on Sundays, be out in public, Ford being able to attend the Temple, and even having the opportunity to attend the funerals of our dear friends and neighbors and pay tribute to them (five have passed in the past few months, three in the past week).

We were gifted tickets to the
Scera Outdoor Theater and enjoyed the production of Joseph and the Amazing Technicolor Dreamcoat. We are looking forward to the Annual Summer Ward Party this week also. We are figuratively filling our buckets to prepare for the coming weeks of isolation when Ford's white blood cell count will once again drop and his immunity goes to zero.

Thank you to everyone for the notes, emails,
Facebook posts, hugs, calls, visits, and the ton of support! You all are awesome and we are truly blessed continually.

01 August 2009

The Lost Is Found

Yesterday afternoon a little after 4:30 pm we received news that the slides had finally arrives at the HCI and the pathologist would be able to examine them.

Also, we received the okay for treatment to wait until 11 August to begin.

We will hear sometime this coming week when Ford will have the port inserted and what stage the cancer is in and what our schedule will be.

So for now, we will enjoy the weekend and week to come, getting things done that need to be done before we begin to focus once again on whatever it takes to fight this battle with Ford's cancer.

Ford was able to go to the Temple for his weekly assignment for at least a couple of hours. He has a meeting early tomorrow morning. Oh! how he loves working in the Temple and associating with the workers. We appreciate the allowances that have been made to allow him to continue doing what he can, when he can. Thank you, Brother H., for your care and kindness.

We have both enjoyed being able to attend Church on Sunday. The association with our Ward family has been wonderful. We have received strength from the messages and lessons. We are sorrowful that four of our neighbors have passed away in the past two or three weeks, but are grateful for the knowledge of the Plan of Salvation. Each one has lived a good life and have been unique in their interests and accomplishments. They have done exceptional things and touched many people's lives. All of them have wonderful families. We pray that those left behind will feel loved and comforted and blessed with what they need at this time.


"No matter how bleak the chapter of our lives may look today, because of the life and sacrifice of Jesus Christ, we may hope and be assured that the ending of the book of our lives will exceed our grandest expectations. 'Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him. ' "

Dieter F. Uchtdorf, "The Infinite Power of Hope," Ensign, Nov. 2008, 22-23.