28 February 2009
Around 10:30 am, he was moved from the ICU up to the 7th floor. It is quite different leaving the ICU where he had one-on-one care focused on his well-being and knew his history.
He has rested and slept most of today. He ate pretty well at lunch and ate all of his supper. He insists on doing everything for himself. He is getting his balance and bearings back.
Tonight, with some help, he was able to get up and walk to the bathroom. This is great and will help his system begin working well. He has had some stomach issues today and we are hoping this gives him some relief. He is now asking when he can go home.
He is tired and uncomfortable. We would still like to limit his visitors, especially as he moves into the time when the chemo treatment will kick his white blood cell count down really low and limit his immune system's ability to fight off infection.
We do appreciate the phone calls, emails, and offers of food. If you want to bring anything over, please call or take it down to my mom. One wonderful neighbor family left a treat on our doorstep and another neighbor's dog ate it before we were able to enjoy it.
Thanks to you all again for your support.
27 February 2009
The arterial line that was put in while in the ER was removed this morning. The bi-pap machine for breathing was also removed. He was not given any sedation all day long. His output was good. The EEG came back showing no seizures. An x-ray of his lungs showed improvement.
Tonight he was able to tell us that he was hungry. He had some clear liquids: two small cartons of cranberry juice and some chicken broth. He is also aware enough to tell me that he feels really crummy.
He was moved to the other side of the Critical Care ICU to get him further away from some possible exposure to some nasty bugs. Tomorrow he will most likely be moved to the Intermediate ICU and started on a soft diet.
He will not be transferred to SLC. The doctors at the HCI are in communication with the doctors here and with me.
Slow and steady is the course of recovery as of tonight.
26 February 2009
Also, the respiratory therapist checked him while I was there tonight and said that his lungs sounded clearer. That is another small improvement that is huge!
Right now he is restrained, because every 1 1/2 hours, like clockwork, he becomes agitated and begins to try and pull at everything. Since he is quite "wired" and "lined," pulling anything out would be disastrous. We're hoping that with the increased sodium, he is able to settle down more with out sedation.
I am in awe of the ICU staff. They are absolutely fabulous. Ford is in great hands!!
Thank you for your kind messages and calls of love and support. We are so blessed.
The HCI doctors agreed that he was being very-well cared for at UVRMC and that they would wait until he became more stable before they tried to move him up to the U of U Med Center.
Bringing sodium levels up needs to be done slowly so that other bad things do not happen.
FYI: Sodium levels should normally be somewhere between 135-145 mmol/L. Ford's were at 114 last night. This drop was sudden, within a matter of about 24 hours.
They have been able to bring that level up to 116-117, but they have kind of stuck there this afternoon. They are working on how to correct this and get things moving again in the right direction.
When his levels increase some more, he will begin to recognize a little more what is happening. Right now he is sedated. He is not aware of where he is or what is going on around him.
He is also on a bi-pap machine that helps him with his oxygen levels and helps to clear his lungs.
25 February 2009
Ford was anxious to get started with treatment. It had been a little over 5 weeks since we first received the news that he had cancer. Now he was just hours away from beginning treatment and he was ready to get started. He ate a good breakfast, navigated us safely and efficiently through morning rush hour traffic (he is a GREAT navigator and co-"pilot") and we arrived on time for our appointment with the doctors.
Dr. Pollack gave us a run down on test results. As we pretty much knew, the cysoscopy and echocardiogram results were good. The PET scan showed areas of enlarged lymph nodes, but not "hot," which means those areas have Low Grade Lymphoma. The majority of cancer is in the stomach and is very "hot." The general concensus is that the Diffuse Large B Cell Lymphoma is largely what is in the stomach area.
Dr. Pollack explained that there is 70 to 80% chance of curing the lymphoma in the stomach with the R-CHOP chemo treatment. The 20% that isn't cured can be made into 10% (or increases to 90% cured) with other treatment.
If additional treatment is necessary, it would most likely be Prophylaxis treatment or Auto Transplant. The bone marrow would be cleaned and stem cells would be collected and frozen for later use.
If that didn't work, then the next step would be Allo Transplant (other cell treatment) from a donor. The best chance of a genetic match would be siblings. Offspring do not qualify because 50% of DNA is from the other parent.
Ford summarized it by saying that: "We play using our 80% free-throw shooter at the line. If he misses the shot, then the next best thing is for him to get his own rebound. If he misses the rebound, then another team member steps up and grabs it. There are options. The best option is to make the shot." Pretty succinct.
The enlarged lymph areas in the lungs are not as "hot" which the doctors believe indicates that it is the MALT Lymphoma (Low Grade) in the lungs.
If the MALT Lymphoma has affected Ford's eyes, the Prednisone (the "P" part of R-CHOP) should clear that up. (R-CHOP is an acronym for the drugs used in treatment.) Prednisone is a steroid that kills lymphocytes.
Lymphocites are small white blood cells that are a large part of the body's defense against disease. They are responsible for immune responses. One of the two main types of lymphocytes is B cells, which make antibodies that attack bacteria and toxins. To my understanding, it is one of the B cells that has gone beserk and is causing the cancer situation.
We then headed for the infusion room. This is a large open-air room with a central nurses' station in the middle, and several recliner-style chairs (probably 20 stations) lining the walls, set very close to each other with room for one visitor. The patient sits in a recliner and the bags of chemo meds are hanging from portable posts and run through electronic pumps. The IV insert was done and Ford did fantastic (no passing out--yea!). Then he was given a series of pre-chemo meds: Ativan (anti nausea), Benadryl (antihistamine or anti allergy), Tylenol (for redness & flushing), and Zantac (which helps with nausea).
Being Fat Tuesday, the nurses were wearing Mardi Gras beads and they offered us our choices. Ford declined and I chose 4 strands, one color representing each of our three daughters (purple, red, & green) and a small orange strand for the granddaughter (we think orange is her current favorite color. Go figure. <-: ).
Next, Ford was given the Prednisone (pill form, orally). The nurse went step-by-step explaining everything as she went through the procedures and also through the written material given to us in a large binder. This allowed time for the first series of meds to take affect.
The first drug in the next series is the R (Rituximab or Rituxan). This is a designer drug. It looks specifically for the marker on the cancerous cell and kills it. It is very powerful and we were told that within the first few minutes, it will kill millions of cancer cells. Because of the way it is made, it can cause severe reactions so during the very first treatment it has to be administered slowly and in increments by IV drip. If the patient reacts, the drip is shut off and saline is pumped in for 30 minutes. Then the Rituxan is restarted. When the total dose of Rituxan is through, then the Doxorubicin (which is the H of CHOP--a newer medicine that no one wanted to change the acronym for) and the Vincristine (or Oncovin--the O of CHOP) are both given by IV push. The last in the series is the Cytoxan.
Ford did well for the first hour and a half. Every half hour the dose is increased and vitals are checked. He made it up to the 200 level. Then the first reaction came. Ford became a little anxious, his throat began to tighten, and he started to get chilled. The nurse explained that when most people react to the Rituxan, it is usually right at this point, so not to worry. The drip was stopped and the saline began. They wrapped Ford in a lot of nicely warmed blankets and made a call to the doctor (protocol). This was at about 12:45 pm. In 30 minutes, the Rituxan was restarted at a lower dose (100). Again, every 30 minutes the dose is increased and vitals checked. Dr. Pollack stopped in to check on him at about 1:30 pm.
Ford made it back up to the 200 level and was just about to be increased to 250 (at 2:45 pm) when he started to itch. The drip was stopped for 15 minutes while the saline was given. It was restarted at the 200 level. This time Ford sailed right through and finished with the Rituxin at about 4:20 pm. The nurse switched the IV to a saline flush (the rinse cycle) and at 4:30 pm, she started the IV push of the next two drugs. This took about 20 minutes. At 4:50 pm, the last course of the "meal" was the Cytoxin. All was finished right at 6:00 pm. The nurse explained that normally there are no more reactions to the Rituxin in the other treatments. The other treatments should take about 5 hours instead of 8 hours.
Ford was superb through it all. He kept his sense of humor (relating his favorite joke to literally every member of the staff we encountered!) and was calm and cooperative. By the time we were finished, he was exhausted and a bit "loopy in the head."
We were told that Ford could eat during the treatment so we came well supplied with fruits, nuts, and other snacks, and a LOT of water. Ford read some, ate regularly, rested with his eyes closed, and did great at drinking most of the water. He was the ideal patient, in my opinion. He communicated what he needed to when he needed to do it. He cooperated and did what he had been instructed to do: eat, rest, & drink lots of water. I admire him. He never complained, just talked himself through the tough parts (smile).
We headed home, unloaded all our stuff from the car, and ate dinner. Then he spent the evening watching the BYU vs Aztecs in San Diego game.
He slept pretty well throughout the night until about 3:45 am. As predicted, he has a slight headache from some of the chemo meds and a bit of nausea. He has taken the prescribed meds for those.
This morning, he has had "his usual" for breakfast: Shredded Wheat, and is feeling okay. It is going to be a very casual day for him.
Ahead on the schedule: Blood work on Thursday, 2/26/09. Next chemo treatment on Tuesday, 3/17/09 (the day Ford refers to as National Persecution Day), St. Patrick's Day.
24 February 2009
Forgive me, please. Tonight we will just let you know that things are well with us. Ford is doing well. We will post more tomorrow.
Thank you all for the cards, emails, phone calls, prayers, and especially to those who have fasted for Ford. A strong support system is vital to recovery, so we know Ford is going to do very well! Til tomorrow~
23 February 2009
We made a mad dash down the hill to the U of U Med Center cardiology department. There was very little wait. However, once Ford was in the room to get the echocardiogram done, the tech was called away for about 20 minutes. When he came back, the test took about 45 minutes. Because the tech was training a student, there was a lot of talk back and forth. The first several times that the tech made comments like "remarkable" and "excellent" and "handsome look," I thought he was referring to his work. However, it turns out that Ford's heart is a great one for looking at and he was able to do quite a bit of teaching because of it. The tech has 27 years of experience and is happy to share what he knows. He told us that the heart is all about 4's. "It's 4 and 4 and 3 plus 1 and 2 plus 2." (In my spare time I may actually try to make sense of what that means.) And it--Ford's heart--works very well. It was really quite fascinating. He invited me to pull up my chair and watch.
Tomorrow we meet first thing with Dr. Glen. We are assuming that we will get the results of the PET scan then. The interesting thing is that at HCI, they let you look at a replay of the scan and explain what they see. After that, it will be "off to chemo we go" and a new experience begins.
22 February 2009
21 February 2009
Ford said it took about 30 minutes to change, get the IV set up, and the radioactive sugar injected. Then he waited an hour to let everything circulate before they put him on the table and got him into the scanner. That process took about 30 - 45 minutes. Ford's review of the scan goes something like this: "very long, very high tech, but if you're going to sell this ride to Disney, you need a big improvement in the storyline."
What did I do for almost 3 hours? Read the material in the large binder that we received on Tuesday about orientation, tests, medications, nutrition, financial aid, insurance, treatments, resources, and some forms to complete. Ford's brother John gave the perfect analogy of the point I have reached: "It's like trying to get a drink out of a fire hydrant." My sponge just isn't absorbing much more right now.
For anyone who might like to know, this is a blurb on PET imaging:
"Other imaging techniques, like CT or MRI scans, can only show the structures of the body. By showing the body's chemistry, PET scans allow physicians to find cancer and the spread of cancer much earlier than they have in the past. In many cases, this early detection leads to fewer invasive diagnostic procedures, more accurate treatment techniques, and improved survival rates."
"Patients are injected with a small tracer quantity of radioactive material that is attached to a simple sugar. Because sugar is needed by cells for energy, the PET scanner can track the amount of sugar used by cells throughout the body by picking up signals from the tracer. Since cancer cells use more energy (or sugar) than healthy cells, if physicians see a high concentration of the tracer anywhere in the body, they will suspect there is cancer in that area."
Ford is awesome. He has a great outlook and disposition. He has always been a great patient when he has felt ill and now is no different. This morning he was able to go to the Provo Temple to fulfill his assignment as assistant shift coordinator. The shift coordinator has been good at watching out for him, allowing him to help as much as he is able and then sending him home when he sees him getting tired.
Everyday we receive some bit of information, advice, explanation, or encouragement that helps us along. Once again we express our gratitude for wonderful family and friends. We are buoyed by the support and feel strength from the prayers.
Next up is on Monday. Ford has two more tests, the first beginning at 9:00 am at HCI and the second at the U of U Med Center. Then Tuesday begins with an appointment with the oncologist at 8:30 am followed by chemo. We've been told that the treatment will be roughly an 8-hour procedure. Hopefully it won't be a rough 8-hour procedure.
19 February 2009
Ford's supervisors and co-workers at BYU have been totally wonderful. The arrangements have been made and approved for him to work from home when necessary. He has accumulated quite a bit of vacation and sick days. That will help also.
My supervisor at BYU is an amazing person. She was very understanding and has agreed to put me on an "injured" reserve list until we can figure out what I will be able to do in the future.
At Cove Point, I gave notice that I would be unable to work weekends. They were very kind. On Wednesday, the director invited me (strongly suggested) to take time off from doing the weekday activities so that I could give full energy & concentration to helping Ford. That is a very generous act because now they have another area to fill. I love doing the activities and I love the people I work for and with. Although I will miss them the choice is very simple.
Tomorrow afternoon we travel back to the Huntsman Institute for a PET scan. Then a weekend to rest and continue to prepare for next week. We have a lot a material to read through and so much to try and comprehend. We are trying to "eat this elephant" one bite at a time (hopefully without getting indigestion). <-:
18 February 2009
17 February 2009
Before I write any of that let me tell you about what happened on the road. There had been a major snow storm approaching Utah and all of the predictions were that it would start snowing about 7 pm on Monday night and continue straight through until late Tuesday and even possibly into Wednesday morning. The bulk of the storm was supposed to be during the morning commute time and then again in the afternoon just about commute time. I had been concerned all night. I looked out at 7 pm. No snow. At 8 pm still no snow. Up during the night and no snow. Again I checked about 4 pm and it had begun to rain a bit. By 7 am, Ogden and parts north were getting pounded. It was moving across and closer to Salt Lake. At 8 am reports were that it had started snowing in SLC and as far south as American Fork. We planned to leave early to give us enough time to go slow if we had to. We left at 8:30 am and we arrived at the Huntsman Institute around 9:30 am. The whole corridor had opened up and was clear all the way. While we were in doing all we had to do, it snowed several inches and someone told us there had been major white-outs. As we left to go home, along the foothills it was slushy and snowing but not too bad. As we drove nearer to I-15, the weather tapered off and the roads were wet, but not bad. Crossing over the Point of the Mountain, the roads were fantastic and almost dry. We were truly blessed today!
The highlights of what we learned at the Huntsman are:
The doctors believes that Ford only has 2 forms of cancer, the MALT and the Diffuse Large B Cell cancer.
They also believe that he is Stage IV - A which is better than a B.
They also believe that he will respond well to treatment.
They believe that the cancer in the lungs might be the MALT and not the Diffuse Large B Cell.
Dr. Glen told us that along with Ford's losing weight, one of the biggest risks we face is that the cancer will perforate a lining like an intestine or a lung or bowel. That would be big time trouble. They will be working to prevent that. I will be working on keeping him from losing any more weight.
They would like three more tests done before beginning treatment.
1. PET Scan--to help determine how far and where the cancer has spread and what type might be where.
2. Cystoscopy--a CT scan from years before show the same thickening of the bladder with very little change. The doctor has doubts that the thickening is cancer, but because Ford's dad has had bladder cancer, they want to make sure.
3. Echocardiogram--they believe that Ford's heart is in good shape, however this is a precaution because in case there is a problem, it would change treatment. One of the drugs used can cause heart damage.
Other things we learned: there is a possibility that there was MALT as early as 2005 when he had the bleeding ulcer. The stomach was already affected and the ibuprofen created enough irritant that it began bleeding. The ulcer was cauterized and "healed" to the best of knowledge. (This was during the ACL tear and repair, subsquent blood transfusions and then blood clots in legs and arms) Because MALT is low grade and slow progressing, it went undiagnosed and the ulcer reappeared. It is probable that the Diffuse cancer developed from the MALT.
Anyway, we go back to the Huntsman Institute on Friday and Monday for the tests. Then if nothing major develops, Ford begins chemo next Tuesday. It will be around an 8 hour process. Subsequent treatments (one day every 3 weeks) will take less time by a several hours. The first is the worst. For most, 6 months of treatments is enough to kill the cancer.
When my mind begins to decipher and make more sense of all we were told today, I may post more. If anyone has any questions, ask away. Don't hesitate to call or contact us. You won't be bothering us. Personal visits, however, will be very limited.
We are immensely grateful for your prayers and support. The prayers are being answered and we gain strength from them. Everyone has been so wonderful. Thank you.
13 February 2009
The braces were removed and the impression was taken for the splint (a nice little clear plastic retainer sort of like a whitening tray). I smiled as Ford ran his tongue over his teeth and had the same response that our daughters, me, and the majority of those that get to sign THE WALL have: "There is a lot of space...they feel so big...etc." It took some work to get the glue and cement off the teeth. There is still one stubborn place that may work off on its own. The one result of taking the braces off that I had forgotten and that Ford didn't expect is that without the wires and all putting tension on his teeth, his teeth (and/or gums) hurt last night. Sort of a reverse effect without the support. Today we go back for the splint. That should help
We certainly have been getting an education with all that is going on. Ford has had the opportunity to work with a man that has pretty much dedicated his life to researching cancer. He has sent us some material and places to research on our own. Also, he has given very helpful suggestions on things we might do in this process.
Last night we attended a wedding reception with many of our friends from the neighbor we used to live in. We received many expressions of concern, love, and support.
Quite by coincidence I also met a man last night that has been battling a very rare form of cancer for several years. He chose to go to the Huntsman Institute for treatment and gave us some tips on how to get around, where the good places to eat were, where to find the courtesy carts that can ferry us around if Ford gets too tired, and a suggestion on how to schedule things once we get going with treatment.
I am very grateful for each and every moment that someone spends helping us no matter how small or insignificant it may seem to anyone. It is huge in our lives. We appreciate the prayers. They carry so much strength for us. Thank you to you all.
11 February 2009
By 8:30 am, I had made contact with the patient coordinator in the Lymphoma area and answered all the questions they needed answered.
By 11:30 am, the coordinator called me back telling me that they had managed to get copies of all the necessary reports except the Endoscopy biopsy results (the one we waited almost two weeks for). She had contacted the coordinator in the Provo oncologist's office in order to try and secure them. Since we had not said anything to anyone in the Provo office and because we were scheduled to begin treatment on Friday, I called and canceled the start of treatment.
We have an appointment scheduled for Tuesday, 17 February at 10 am with one of the Lymphoma specialists at the Huntsman Institute.
Also, Ford goes to the orthodontist tomorrow to have his braces removed and take necessary impressions for a splint (special plastic retainer). Our wonderful orthodontist agreed that taking out the braces for the time being would be a good idea until chemo treatment is completed. I was more than a little surprised when I found out that our orthodontist is laid up at home after having a skiing accident last week. We certainly wish him a speedy recovery!
The other news of the day is that Ford and I agreed that for the duration of the treatment, I needed to not be working on the weekends. So if anyone knows of a good receptionist or needs a job, I know of a very good place to work.
10 February 2009
The diagnosis is as follows:
Ford has what is termed Composite Lymphoma. He has 3 (yes, that is a three) kinds of Lymphoma: (all are technically Non-Hodgkin)
In the bones: Waldenstrohms. To date it is incurable, but is treatable and has a life expectancy measured in decades. It is a low grade B cell lymphoma and is slow progressing. It is a rare form of cancer.
In the stomach: MALT which stands for "Mucosa-Associated Lymphoid Tissue." It is an uncommon form of Non-Hodgkin Lymphoma. It is also a low-grade, slow progressing. Currently incurable, but treatable.
The third cancer is Diffuse Large B-Cell Lymphoma. It is common. It is curable. It is high-grade and more aggressive. This is at a Stage 4 because it is a "probable cause of his lung issues." Without treatment survival is 1-2 years.
The oncologist wanted Ford to begin treatment tomorrow morning. We have asked for 48 hours to be able to try to comprehend all we've been told, to deal with insurance issues, and talk with BYU Human Resources.
Because the drugs used in the chemo treatment are so high powered and so his immunity will be low or nil, we were counseled to keep Ford pretty protected. Absolutely no exposure to anyone that is ill and no exposure to any one that has recently received vaccinations.
The treatments are 1 day (except for the first one which is a two-day procedure) every 3 weeks. His white blood cell count will drop dramatically and take approximately 3 weeks to build back up. After 6 cycles (approximately 6 months) he will be retested to see how well the treatment is working.
While we are grateful that these are treatable forms of cancer, we are well aware that the treatment will make Ford very sick, weak, and vulnerable. It will be an long, arduous process. There can be some very nasty side effects and the drugs do have some risks.
We appreciate the support we have received through phone calls, emails, and visits. We especially ask for continued prayers in Ford's behalf. One of the difficult realities for Ford is that he will not be able to participate in some of his favorite activities of playing Frisbee, riding his tricycle, and working in the Temple for a little while.
Ford's quote for the day: "It is a fight to the death. Odds are 2 out of 3 of winning. I'll take those odds." (all said with a pirate accent) (-:
04 February 2009
And the answer is: the results are not back yet.
The lab work is tested in a place in Connecticut. The oncologist had called and pushed them for results. We were sitting in the office waiting to see if the lab back East had already closed for the day, if they would call back, and if they had results.
In the mean time we discussed the ins and outs of Waldenstrohms, the type of low grade cell B lymphoma that they know that Ford has in his bones. The treatment is chemotherapy, IV for one week every four weeks for six months.
Anyway, about 20 minutes into the discussion, a gastroenterologist came in and said he had spoken with the head pathologist and he had sent samples to UCLA to be tested. When that lab was called, they were told that it takes a lot of time to complete these tests. However, the pathologist said that at first glance, the cancer looked like a lymphoma. I asked the doctor if it could be either of the other two kinds that were pretty bad. He said that lymphoma looks nothing like the other two so if the pathologist said he thought it was lymphoma, then the likelihood is good. There are 40+ types of lymphoma. They are trying to nail down which one we are dealing with. So far, it is incurable but treatable.
We are feeling pretty blessed about now. Again, thank you for all the prayers and support you have given and are giving. We are sincerely grateful.
03 February 2009
Rx: Avoid known allergens and reduce all other nonessential stressors. (Yea, right!) (-:
He said that dealing with Ford's situation right now is enough for one body.
The results of one test are in and the other should come soon. The oncologist called with the results of the bone marrow biopsy. He told us that the test showed that Ford has Low Grade Lymphoma. "It is slow growing, incurable yet treatable, with life measured in decades. It is more treatable faster." He said that the type is probably Waldenstrohm, but may be Marginal Zone. It is one of the two kinds, but doesn't matter because they are treated the same. He said that lymphoma is the best kind of cancer to get because it is very treatable.
He verified that Ford does not have MGUS or Multiple Myeloma.
But he said that the bigger issue for now is in the stomach. We need to wait and see what those biopsy results tell us. It may be a different cancer and a whole different ball game. It would be great if it also turned out to be a lymphoma. He said we'll see on Wednesday afternoon unless he calls us sooner.