30 July 2009

What We Know So Far

"There may be things in our character, in our behavior, or concerning our spiritual growth about which we need to counsel with Heavenly Father in morning prayer. After expressing appropriate thanks for blessings received, we plead for understanding, direction, and help to do the things we cannot do in our own strength alone."

David A. Bednar, "Pray Always," Ensign, Nov. 2008, 41.

The whole talk "Pray Always, by Elder Bednar, given in General Conference, Oct. 2008, has so much insight and counsel that can bless our lives. I have found so many parts that fit what is needed for Ford & me here and now. It is like the path is lighting up right before our next step.

Having said that, here is where we are today after the visit at the Huntsman Cancer Institute yesterday.

Dr. Glenn first told us when we arrived that because she had not received any reports, she evidently had not given the HCI pathologists enough time to review the slides from the endoscopy biopsy that were being sent from the lab in Texas. She did receive a copy of the written report that Dr. Bodily, the gastroenterologist in Provo had received. From that report, she told us that it appears that the suspicious cells found in the biopsies from Ford's stomach show Large B lymphoma cells like the ones that were initially diagnosed in January/February. The assumption is that these were those that did not fully respond to the R-CHOP chemo treatment. (The R-CHOP, of course, is an acronym for the meds used in this particular round of treatment.)

When the path lab called back to Dr. Glenn, the news was that the slides could not be located in their lab and the question asked "Could they have been directed to Dr. Glenn's office?" Already knowing that they were not in her area, Dr. Glenn let us know that the location of the slides are currently unknown and they were checking to see if they were actually sent from the Texas lab. As of this morning, the status of the slides are still in a state of flux.

The HCI pathologists need the slides, along with the results from the bone marrow biopsy (that was done later yesterday) in order to stage the cancer (what areas are affected and to what degree).

The bone marrow biopsy and aspiration was, to put it mildly, grueling.
When the Provo oncologist performed "the bone marrow biopsy" at the first of the year, the procedure took approximately 10 minutes start to finish with about 15 to 20 minutes of recovery time for Ford. It involved, to the best of my recollection, two needles: one to numb the area and one that was inserted into the bone for the biopsy. Some iodine at the beginning to sterilize the surface area of the skin at the hip and one simple bandage at the end over the site of the needle insertion.

The procedure at the HCI took approximately 75 minutes from start to finish with about 45 minutes of recovery time for Ford. The iodine at the beginning was the same. Instead of having him lay on his side during the procedure, they had him face down (that was a good thing). There were 4 or 5 needle insertions for numbing all the way down to the bone. I think there were 3 needles used to take marrow samples (I was giving full attention to Ford at this point--no pun intended--and I lost track). And one instrument used for the bone sample, smaller in diameter than a regular drinking straw (as I look around, it was more the diameter of the wire connecting my mouse to the computer). It was made of metal and once inserted, was twisted (screwed) into the bone to take a sample of the bone itself, similar to a geologist taking a soil sample of earth. It literally had to be "jiggled" from side to side to loosen it to be removed.

Then the site was cleaned and bandaged with a thick bandage and covered with Tegaderm (
thin, clear sterile dressing that keeps out water, dirt and germs, yet lets skin breathe) that looks like a huge square patch of clear tape. (I thought the description was cool so I included it.)

The final part of the procedure was a finger poke in order to get three drops of blood for 28 slides. For a while, the site of the finger poke hurt more than anything else.

Ford was terrific. He began feeling a little sick to his stomach and began to sweat profusely after the 3rd injection of Lidocaine. The bedding and his shirt was soaked with in minutes. The MD and bio technician slowed things down and tended to Ford. They put a wet, cool cloth on the back of his neck. He began to recover pretty quickly and they continued with the procedure. I kept up a dialogue with Ford until he felt well enough that he began entertaining us all with his routine of jokes. He really is amazing. After the procedure was all over, the head nurse came in to check on Ford and answer questions. She noticed that he was bright red from his neck down his chest and abdomen. She kept close watch checking for an allergic reaction and finally decided that because it wasn't ever red around the site of the procedure, that it was a strange (can you believe that about Ford? --smile--) type of reaction due to the profuse sweating and the heat caused by the anesthetic. He also had begun to chill and to shiver. This created a bit of a conundrum in how to diffuse the heat reaction, but to bundle him to stop the chilling and shivering. It took a while, but Ford did well.

Once the staging is completed, and, if nothing is radically different this is a somewhat simplified overview of what the next protocol entails:

The next round of chemo treatment is RICE. The R in RICE is the same med as in R-CHOP. The ICE meds are more potent chemicals than the CHOP. The treatment is administered over 4 days. The first day of treatment is IV infusion, the R & E, done in the infusion area of HCI where Ford has had his other treatments. The second day of treatment Ford will be admitted into the Huntsman Cancer Hospital for minimum 36 hours. The I & C will be administered and Ford will be monitored by the hospital staff. He will be released the third day (after 36 hours). On the fourth day, he returns for the Neulasta injection.

So, 4 days of treatment given every 2 weeks for 3 or 4 treatments. The 4th treatment is given, if deemed necessary. After the last treatment, whichever it is, then the Transplant Team begins transition. Ford is then transitioned to prepare for an autologous (self-donated) stem cell transplant. He goes through a regimen to harvest his own stem cells. When the needed amount has been collected and frozen, then he undergoes a one-time radical chemo treatment of BEAM, plus either the R drug or a different one called Bexxar. After the BEAM, he then is hospitalized for a minimum of three weeks for the stem cell transplant and recovery. During the several days it takes to harvest the appropriate number of stem cells (calculated so many thousands
needed per kilo of the patient), we have to remain within 30 minutes distance of the U of U hospital at all times.

If this does not seem like a simplified version, then you probably can realize how immense the detailed version is.

One detail: Ford will have a port inserted this time. This port will consist of a central line into the heart. There will be three lines that will be accessible for blood draws, infusions, transfusions, IV's, and transplants. The first time Dr. Glenn thought it was too dangerous given Ford's Factor V Leiden condition. When we asked what had changed, she said, "He is now on Lovenox." Okay, then.

We will update as we are updated.

P.S. I have been trying to complete this blog since early this AM and now this is the third time I have typed this blog. Earlier posts did not post. No clue why not.

28 July 2009

Thoughts on Prayer

Until we have more news to give, these are some "happy" thoughts about prayer:

"Morning and evening prayers—and all of the prayers in between—are not unrelated, discrete events; rather, they are linked together each day and across days, weeks, months, and even years."

"We are commanded to 'pray always' (2 Nephi 32:9; D&C 10:5; 90:24)—'vocally as well as in [our] heart[s]; . . . before the world as well as in secret, in public as well as in private' (D&C 19:28). I testify that prayer becomes more meaningful as we counsel with the Lord in all of our doings, as we express heartfelt gratitude, and as we pray for others with real intent and a sincere heart."I witness Heavenly Father lives and that He hears and answers every earnest prayer."

David A. Bednar, "Pray Always," Ensign, Nov. 2008, 42.

26 July 2009

From One Who Knows

"Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others."

Joseph B. Wirthlin, "Come What May, and Love It, Ensign", Nov. 2008, 27.

23 July 2009

"We're Back"

Not exactly the news we would want especially heading into a holiday, but it is what it is.

Nurse Debbi called from the Huntsman this evening to tell us that the reports from the endoscopy biopsies show that (and I quote) "It is back."

Whether the cancer is actually back or whether this is some that wasn't killed before is probably irrelevant. The point is that on Wednesday, 29 July, we go back to the oncologist at the Huntsman and talk about what is going on and what to do next. Ford will also have another bone marrow biopsy done to see if there is any cancer in his bone marrow.

The nurse indicated that there will probably be another round of more radical chemo. Stem cells will be taken from Ford's bone marrow and frozen for future use, if needed. This is called an Autologous bone marrow transplant. "Auto" means "self." Stem cells are taken from the patient before the patient gets chemotherapy or radiation treatment. When chemotherapy or radiation is done, the patient gets their stem cells back. This is called a "rescue" transplant.

The slides with the biopsies from the endoscopy are being shipped to the pathologists at the Huntsman Institute and they will determine what is happening. We will be able to meet with the oncologist, hear what she has to say, ask any questions we have, and then go from there.

Bottom line: Please continue to include us in your prayers. Thanks ever so much! And...Happy Pioneer Day and weekend!!

21 July 2009

Not All Good News...

Not all good news coming from the endoscopy.

The gastroenterologist called this afternoon. Said he was on his way out of town and stopped to check paperwork on his desk. The reports coming back on the biopsies showed some suspicious cells. He will forward the reports to the oncologist at the Huntsman. He apologized that news wasn't better.

We will wait to hear what comes next.

19 July 2009

Revision and update

One reason not to blog while tired is that the information may not be processed quite as accurately as could be. Because of this, the post Drumroll, Please has been edited with a bit more accuracy concerning the PET CT results. The outcome is still the same overall: Good.

As for what is currently happening, Ford was not able to make it to the Temple yesterday. With the endoscopy the day before and less hours of sleep during the night, he was a bit drained of energy. He began to perk up a bit during the afternoon-evening enough to help with a gardening chore and do some dishes that have piled up.

Today the goal is to attend Sacrament Meeting. We will come home after that and if he is feeling up to it, he will try to attend his Priesthood meeting. Little by little he will make it back to a regular routine. He has done well at trying to listen to his body and then respond accordingly. For someone that has had relatively little illness or restriction most of his life, he is doing very well.

17 July 2009

Procedure Report

"Everything looks great!" said the doctor as he walked into our recovery area. "The ulcer is gone." And along with some other details indicated that the results of the various biopsies he took would be back in about one week. We will receive a call from his office.

Ford is currently at home sleeping off the medications. He was able to have some soup and a sandwich and will probably be asleep most of the afternoon.

He had hoped to be able to be in the Provo Temple tomorrow. We will see what the morning brings.

PS: The doctor was a lot more animated and willing to talk today than he was after the first procedure back in January. (-:

16 July 2009

Sooner Than Expected

Tomorrow morning Ford will have the endoscopy that Dr. Glenn wanted done. The gastroenterologist had a cancellation and so was able to get Ford in right away. This has taken us a little by surprise. Ford had intended to go in to work for a few hours in the afternoon for the rest of the week. He did go to work yesterday for about 4 hours and came home totally exhausted. He thought he was doing okay while at work, but really felt differently when he got home. Consequently, he was too tired to go to sleep at an early hour and did not get a lot of sleep. Today he took it easy and was able to rest some.

Things were a little lively in the morning with a visit from our daughters and granddaughter. Whoa, what energy!!

I am sure that the results of the biopsy(ies) will take some time to get back, but I will update tomorrow on how Ford is doing.

15 July 2009

Drumroll, Please...

This is an edited version--7/19/09-- from the info previously posted.

Yesterday Ford had his appointment with Dr. Glenn, the oncologist that has been treating him at the Huntsman Cancer Institute to determine if the 6 chemo treatments were enough or if he would need to receive more.

She checked him over, asked him question, and then talked about the results of the PET scan taken on Saturday and his current lab results.

It appears that the chemo treatments were successful and Ford will not have to receive any more treatments.

He will need to have another endoscopy to get biopsies and allow an actual visual look at what the stomach looks like compared to when he was first diagnosed with cancer. We anticipate that procedure will take place in the next week or two. We are waiting to hear back from that specific doctor's office to schedule the appointment.

The oncologist focused on two main areas of concern, the lungs and the stomach. From the copy of the PET CT report we received, this is basically what has happened:

The swollen lymph nodes are no longer swollen. The density seen in the lungs has significantly reduced with many of the nodules gone.
There was a nodule in the right lower lobe of the lung. It used to measure 2.5 cm and has now been reduced to 11 mm. In the left lower lobe there was a density measuring 2.5 cm that is now 12 x 7 mm.

The stomach wall had a thickening of 2.0 and now measures 16 mm.

The liver, spleen, pancreas, and adrenal glands are normal, as are the kidneys. There was no sugar uptake in the bone tissues.

There were more areas affected than we were or have been aware of, however, these seem to have been resolved.

If the biopsies come back with good news, then Ford will officially been in the recovery phase, no longer a patient, but a survivor of the Diffuse Large B cell lymphoma!

The MALT lymphoma, as the doctor stated, is still somewhere in his body, but has presumably been "beaten back" with the chemo treatment. We will need to be vigilant and watchful to any changes in the future.

What happens now? Ford has been advised to pace himself. Do not take on too much at once. Start resuming activities, yet be cautious not to overdo or overwhelm. His body will take some time to recover from what it has been through. Some of the effects of the chemo may take more than a year to clear through his body. His body is also recovering from the effects of hyponatremia, aspiration pneumonia, blood clots, and an enormous amount of medications.
Although Ford is able to get a lot more sleep lately, he wakes up exhausted. My personal opinion is that there is also a physical and mental "let down" from the stress of the past 6 months.

He will have to tune in to what is happening and respond accordingly. One pattern has become clear, that if he doesn't take a break or a rest when he needs to
during the day, he gets overly tired. Then he doesn't sleep at night and it becomes a vicious cycle of exhaustion. This past week he has been good about laying down for a while a couple of times a day. It seems to have served him well because he has been able to get many more hours of continuous sleep.

The lab results from yesterday were showing great improvement. The doctor indicated that he was anemic, which is normal at this stage, and that he would improve with time. His WBC count is climbing and is actually in the normal range for the first time in many months. The other levels are returning to normal ranges.

Ford is scheduled to return for his next PET scan in three months (October). If everything looks good, then for the next appointment (three months later), the doctor will determine if a regular CT scan will suffice. CT scans are less radioactive than PET scans.

At the end of August, Ford will see the pulmonologist, Dr. Alward, to determine what course to take with blood thinners. At this point, the doctor and Ford determine whether he should remain on blood thinners and switch to Coumadin (an oral med vs. the daily shots in the stomach) or risk no meds and future blood clots. With blood clots having actually reached the lungs, we are guessing that the risks are too high not to take the meds from now on. We will see.

Thank you, again, for the prayers, love, and support. They have yielded miracles.

Some have expressed apologies for not visiting, sending cards, or contacting us more. If all you have been able to do was to include us in your prayers and thoughts and hearts, please know how immensely important that has been to us. It has been enough.

10 July 2009

The Schedule

Tomorrow at 7 am Ford is scheduled to have a PET scan. This is about a three hour procedure. Then early Tuesday afternoon, is his appointment with the oncologist. At that time we suppose that we will find out if Ford is done with chemo or if there is more to be done.

08 July 2009

Slowly, slowly...

Slowly, slowly the count goes up. The lab results yesterday showed that Ford's WBC count went from a 1.2 to a 1.9. At this rate, he may be back within the normal range in 2 1/2 weeks.

Other areas that have either been H-igh or L-ow are leveling out and are nearly back to normal ranges.

Ford is able to sleep most nights, but when he can't he spends time programming (one of the several advantages to working from home).

He has been able to increase his exercise on the stationary recumbent bike, yet recognizes that his endurance is not even close to where it used to be.

Saturday evening we were able to have a small get-together with 3 daughters, 2 sons-in-law, and one grandchild. It was good to be able to celebrate the 4th with a family gathering. The high point of the event was when our granddaughter appeared and stood in front of us wearing her new T-shirt that had printed on it: "I'm going to be a big sister."
That really got the party going! So by the end of January 2010, we will have 3 grandchildren to love and spoil.

The blessings just keep coming.

01 July 2009

Disappointment all around today. As Ford terms it, "I flunked my blood test today."

Typically, the week after a chemo treatment his labs come back with a low WBC count. Since he began taking the Neulasta shot after chemo this count has been very low (in critical range). Then the count bottoms out two days later and begins to climb quickly.

Last Tuesday (7 days after chemo) his WBC count wasn't as low as we've seen (2.5). Of course, it would have gone a little lower by Thursday and then started to climb. By the second Tuesday, the count has usually been close enough to normal. We had expected it to be in or at least near the normal range, which, to us, meant that he could be involved in activities around other people because he would have a higher immunity if coming in contact with some kind of illness. We were confidant enough that this would be the case that Ford was dressed and ready to go in to his office at BYU to attend a mandatory meeting right after we picked up the test results. We so confidant that we were planning (and looking forward to) an outing at a park to play with family today. Ford and I were both stunned to see the results.

WBC = L 1.2 critical value

He ended up not going to the mandatory meeting. He broke the news to the family and postponed the outing to the park.

The email that came back from the HCI nurse was a confirmation from the doctor that because of the change in not taking the Neulasta shot, the WBC would bottom out between days 10-14 and then would begin to improve, but at a slower rate than we had seen before. Yesterday was day 14.

Disappointment and frustration. There is no other way to describe it. This too shall pass and things will begin to improve. But with the 4th of July coming this weekend and family here from out-of-town, we were looking forward to getting out and playing. Now we will wait and see. Bleh! (And why is patience a virtue?)
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