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.



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