10/16/08

About a week ago Soni had the report from Dr.Harker on the last PET-scan. He said there are some unknown shadows and the lymph nodes were slightly enlarged, but it seems to now be in remission & almost all clear. A small bit of activity is still showing up in the lymph nodes, but nothing else needs to be done for 3 months. So in Jan. they will do another PET-scan and see where things stand at that point.

Our family doctor ran a large series of blood tests with 5 vials of Soni's blood to check on kidneys, liver, and any other problems that might have been caused with the chemotherapy. All test came back good.

Sorry I haven't updated this blog sooner, but since Sept. 10 I have been in tremendous pain from the right buttocks, hip, thigh, leg, ankle, and foot and couldn't get downstairs to the computer very often. However, after going through my family doctor, an orthopedist, a pediatrist, and a neurosurgeon, I have finally been informed that it is Spinal Stenosis and a ruptured disk. I am to go back to the neurosurgeon after we return from our trip to Arkansas at the end of the month and see if we want to do a "watch & see" or do surgery.

9/23/08

Soni's had her blood draw on 9/18. It was boarder-line to being too low, so they wanted her to come back on Monday 9/22 for another one to see what the trend was. It was even lower yesterday, so she is having a blood transfusion today Tuesday 9/23/08. She was exceptionally tired last night as would be expected for a low blood count. Hopefully pumping some new juice into her today will perk her back up. Between her being a sicky (cancer) and me being a cripple (on crutches with a plantar faciitis, bad hip & shin), we are a mess! We used the valet parking at the hospital today and they looked at us like "How did you two even get here?"

9/09/08

Soni's 8th & last chemo was all day yesterday. She was supposed to see her main doctor, but he was overbooked and they had to switch on her. Of course, she had the one that she least likes. However, he was OK, but jut didn't give her all the data that we were expecting. But then, Dr. Harker, her main doctor, wouldn't be able to give her any more info anyway until after her next PET-scan on 9/29/08. Her blood count this time had not changed a whole lot.
She will go back for another blood draw on 9/18. We won't know what the next step after the PET-scan will be until we get those results back. So far, if the tumor has not gone, the options seem to be a self-bone marrow transplant or participate in a trial study. Radiation is out of the question because the tumor is located near the intestines and therefore can move around which makes it impossible to zero in with radiation and not destroy the good cells in that area. We didn't know that a tumor in that region could move around, but that's what they tell us. So for now, it's wait and see.

8/31/08

Soni's blood draw Friday was 1 point higher than the 1st one on Thursday. It went from 28.1 to 29.1 ... whatever that means. I'm assuming it means red platelets per whatever unit of blood. (From what I can find on the web, I think it is per mL)

The next chemo is on 9/08.

8/29/08

Soni had a blood draw yesterday and the platelet count was low. They will do another blood draw today to see what the trend is... whether still going down, or has it stabilized. It had been around 31 but was down to 28 yesterday. If it drops to 24, they will do a blood transfusion.

The prednisone that she takes for 5 days after each chemo and the dosage adjusted so she comes off of it gradually at the end of 5 days rather than cold turkey seemed to help some this last time. She was still shaky but not quite as tired.

Hopefully her blood draw today will at least be stable. The next chemo is on 9/08.

8/18/08

Soni had the EKG last Wed. 8/13/08 and chemo #7 today. The EKG showed her heart to be doing great with no problems from all the chemo drugs that have been pumped into her.

The prednizone(sp?) that she takes for 5 days after each chemo has had the dosage adjusted so she comes off of it gradually at the end of 5 days rather than cold turkey.

Her blood draw will be on the 28th of Sept. and the next chemo on 9/08.

8/08/08

Soni met with Dr. Harker today. He had bad & good news. The good is that there is still progress being made in the shrinking of the cancer. The bad is that it is not as rapid as he had hoped. So after the next 2 chemo treatments, he will do another PET-scan and if it is not completely gone, she will need to have radiation... which, of course, she is definitely not looking forward to.

She will have an EKG next Wed. 8/13/08 before the next chemo on Mon. 8/18/08.

8/02/08

Soni had a PET-scan yesterday (Friday, 8/01/08), to see if either a) the PET is still there or whether b) the cancer is still shrinking. We will find out next weekend when she has blood drawn on Thursday before talking with Dr. Harker on Friday, 8/08/08. Her PET (me) is still here, but we hope the other little beast has decreased its presence! She has run out of energy today and her legs and feet are hurting due to retaining water and swelling.

7/29/08
Soni had chemo #6 yesterday (7/28/08), and all went well. She still feels fine today, but will probably bomb out around Friday night or Saturday if the past record remains on course.

She has a PET-scan this Friday, 8/01/08, to see whether the cancer is still shrinking. If so, they will go ahead with 2 more RCHOP treatments of chemo.

7/15/08
For 5 days after Soni's last chemo on 7/03/08, she felt OK. But the bottom dropped out Tuesday and she slept almost 24/7 until Monday 7/14 when she was able to function again. She had another "blood-letting" today (7/15) and it turned out to be about the same as the last one. She seems to feel great today.

Her chemo #6 will be on 7/28/08.

7/03/08
Chemo #5 was completed today. The results from the PET Scan last week indicated that there is only one small piece of cancer left in the center portion of the thorax. The rest have all vanished. So things are continuing to look up. She will have her blood drawn and tested next Tuesday, 7/08/2008.

The only downside at this point is that Soni's meds will keep her going and feeling pretty good for the next 5 days, but at that point she will bottom out and feel really down and out for about a week before she starts to build up her energy again. The downer week is the week of the reunion, so she is not sure if she will feel like going. We will just have to wait and see.

6/27/08
Soni had her PET-scan today and all went well. We won't find out the results until the next chemo treatment on July 3rd.
Will post the outcome when we hear it.

She feels well enough today that we are going to our Inner City Ward picnic this evening at 6 p.m. at Liberty Park which is near the Ward building.

6/13/08
Chemo #4 & blood work went well on Fri.13th. We found out why Soni has been having more stiffness with her arthritis... one of the lesser doctors had mis-interpreted Dr Harker's instructions and had written the wrong dosage on the Rx... 1 pill for 5 days rather then the required 5/day for 5 days after each chemo treatment. Hopefully the new corrected Rx will help. This is the one that really winds her up (Prednisone), so she is to take it early in the morning. After we found out the correct dosage, I came home and got the other 4 pills that were left and brought them back for her to take around noon. So last night she had trouble getting to sleep, but once she did, she slept well. This morning she had a little bit of a headache which was sort of like a mild hangover. But at any rate, she was moving pretty good last night when we went out to eat.

6/02/08
Soni had her blood drawn today, as she always does 10 days after each chemo session.
The white blood count was good and she has no infections or mouth sores.
The red blood count is down a little more each week which is why she is more tired.

5/24/08
Well, we made it through another long day of chemo yesterday. Started at 9:30 for all the preliminary work (blood drawn & tested, doctor's visit, etc.) then sat in a waiting room for another half hour because the treatment room was full and they were short on nurses. We finally started the treatment around 11:00, but because each treatment gets a little shorter, we were still able to get out at 4:00 p.m. We then went out to eat, went to Barnes & Noble and came home.

This morning Soni had a bar mitzva to go to for one of her previous students. Then afterwards, she wanted to go grocery shopping so I took her to the store. After coming home, she was pretty tired, so has sacked out for the day. The next chemo should be around 6/13, although we do not have an exact date or time yet. They will call us next week about it.

5/02/08
Today's chemo went well. No problems encountered. The next blood work is on Mon. 5/12/08 at 3:00 p.m. followed by the next chemo around 5/23/08. They will have to call us on the exact date as Doctor Harker, whom Soni is to see, has no openings on that date. The 2 spots on the shoulder and hip of the previous xray turned out not to be cancer... just arthritis.

4/26/08
Soni wanted to go to Arkansas over her school Passover break to see her sisters and the white dogwoods, pink dogwoods, and redbuds that were in bloom now. Kristi arranged for us to get a standby flight on Delta where she works that was scheduled to & from Tulsa on Tue. 4/22 and RTB Thu. 4/24.The trip has now been completed with a few interesting hassles along the way and we both enjoyed it very much. We were bumped from the scheduled flight leaving SLC and were rescheduled at the far extreme gate of SLI on a flight to Kansas City, which we made, had front seats by the bulkhead and were not crowded at all. We had great handicap assisted service when we arrived at KC. There was a wheelchair waiting for Soni where they took us out to the car rental shuttle and drove us over to the rental place. the bus driver had radioed ahead and they even had a wheelchair waiting when we got off the bus.

At the end of the road trip down to Eureka Springs, it became a bit hectic because much of the freeway system had been rebuilt during the past year and our 1-year old GPS did not have the updates, so in some cases it showed us driving across some fields and the highway we were actually on was shown going across our path from left to right. Then as night began to fall and we could not use a map, we just depended totally on Gertrude (as we call the GPS... Gertrude Polly Smith) and it keep getting us closed & closer to Ft. Smith, Arkansas rather than on a route we probably would have taken in the daytime when we could see the map. However, she (Gertrude) finally headed us east in the right direction. The road was extremely steep and crooked all the way, but sometimes we would pass a warning sign that said "Next 6 miles steep and crooked". We weren't sure how it could get any more steep and crooked! We had been talking occasionally on the cell phone to Carol & Nicole who were waiting at the motel in Eureka Springs for us. They had already checked out a key to our room since we would be arriving late. When we finally reached Eureka at 11:30 p.m., we drove from one end of town to the other looking for the motel. We didn't find it, so we tried to call Carol, but our phone had no service in the mountains of Eureka. So we drove back through town again with no luck and then went through a 3rd time. We stopped at an all-night gas station and asked the woman where it was. She wasn't sure but thought it was by a Pizza Hut. We went back the 4th time and couldn't find the Pizza Hut either. We stopped at a motel that seemed like it had someone in the office, but he wasn't interested in giving us any info on another motel. We tried at another motel and spoke with a very nice gentleman that finally gave us some good directions and we rolled in at 12:15.

The weather there was fantastic spring weather even though it was snowing in SLC. Soni was able to enjoy her sisters and the scenery plus it just so happened that Wed. was Aunt Roberta's 91st birthday and we were invited to attend her birthday dinner at a restaurant in Harrison. Soni seemed to really enjoy the visit there.

Since we were scheduled to fly back out of Tulsa on Thur., we had arranged to drop the kansas City car off in Tulsa, however we found out before leaving that we had been bumped from the Tulsa return flight, so we were rebooked at KC and had to drive back to there. We arrived in plenty of time and went to wait at the gate for boarding. We had been there about 5 minutes, when they called final boarding for the 2:00 p.m. flight to SLC. We were booked for the 5:18 p.m. flight that would have arrived here around 7:00. I figured they could tell me how our flight was looking until closer to time for our flight, so I waited til the last person went through and then gave her our 2 Seat Requests and asked her about our flight. Sure enough, she said she couldn't tell yet, but she immediately began pecking away on the computer keyboard and said, "Is this other person here?". I said "Yes, she is sitting right there across the room in the wheelchair." We received 2 boarding passes and were rushed right onto the plane where we obtained the last 2 seats on the plane. It was tight and cramped in row 16 but we made it back to SL before we were even scheduled to leave KC! So we were glad to be able to "hi-jack" the flight before our flight.

4/13/08
Soni woke up this morning feeling fairly well, although a bit more tired than yesterday and with a slight headache. But she still wanted to go to the Welfare Meeting scheduled at 9:00, then Choir Practice at 10:15 and Sacrament at 11:00. After that she was ready to bag it for the other meetings. We stopped and visited with the Northern Cheyenee Indian lady that we are responsible for to see how she is doing this week and filled out a food order for her from the Bishops Storehouse. Then it was home for a nap.

She goes in for X-rays tomorrow to check out the other 2 spots the PET-Scan picked up in her right shoulder and left hip.
Please keep the prayers coming. They help a lot!

4/12/08
Soni awoke this morning feeling GREAT! She said it was a good night of sleep due to her back not hurting at all for a change. She says she "can just feel those little PacMan things eating away the cancer cells". She even says she feels like the tumors are shrinking already!

For breakfast he wanted to go out and eat at one of her favorite restaurants (Finn's) again while her tongue could still enjoy food. She has been told that her tongue will rebel and soon food will not taste good. I had that problem back in 1986 after my accident and it lasted about 12-18 months. But her taste buds should return to full funtioning when the chem ends.
Her mouth was starting to become a bit sore at noon today but she started on the Rx they gave her for that problem. And she is tired this afternoon, but I don't know if it is her usual tiredness or if it is the chemo starting to catch up to her.

She had originally thought she would not feel like attending church on Sunday, but now says if she still feels this good tomorrow, she may try to go to the first meeting which is Sacrament in our Mission Ward. We will see how the morning greets her.

4/11/08
Apparently, your prayers must have worked. Thank you, thank you, thank you!
Soni came through her first chemotherapy like a champ with none of the problems that she was told she might have. We will have to wait & see what happens during the next couple of days.

We arrived at 7:45 a.m. and left at 3:45 p.m., which made for a VERY long day just sitting in one spot. She had no problem with anything except at the very end when she began to get a slight headache from some of the injections. Watching some of the other patients who had PICCs, we were so glad she had a Port.

She has another X-ray on Monday 4/14/08 to see what a couple of places are that they found on the bone marrow procedure last Wednesday. Then on 4/21 she has some follow-up bloodwork to check her white and red cells and platelets to be sure the chemo is doing what it should.

April 6, 2008

Well, I've been sliced, diced, poked and examined and now we are almost ready to embark on the first chemotherapy treatment. My port is in place and the PET CT scan is complete. Bob enjoyed the PET Scan, as we were the only ones scheduled on that afternoon and the person in charge asked Bob if he wanted to go into the second empty room. In both small rooms there was a comfortable recliner, a warmed blanket, a small "waterfall", soft music, dim lights, and lavender aromatherapy. While I was receiving the infusions necessary for the scan, Bob was relaxing and eventually went to sleep and had a great nap. We woke him when the scan was completed and I was getting dressed. He wants to know when I have another scan scheduled!

Please remember me in your prayers, especially on Friday.

Soni's Cancer Treatment Schedule for Week of 4/01/08

4/01/08
Each of Soni's chemo cycles will be as follows:
1 cycle = A chemo on a Friday and wait 3 weeks.
Then 2nd cycle starts.
She will do 4 cycles then have a PET Scan. If no cancer is present, then 2 more cycles for a total of 6 and hopefully finished with chemo.
Otherwise, there will be 2 more cycles for a total of 8.
The chemo will not be started until April 11 when Dr. Harker returns from a trip. So before that, he has scheduled several tests and procedures.

The schedule for test and procedures is:

(Wed. 4/02, 07:00) go to St.Mark Hospital to have the port installed. We have learned that there are 2 options... a PICC which is like they put in your arm to draw several vials of blood (it would have to be kept wrapped to keep it from getting in the way all the time), and a Port which is a device placed just under the skin up by the collar bone.

(Wed. 4/02, 17:30) go to the cancer Center for a chemo class.

(Thu. 4/03, 12:30) go to the cancer Center for a CT PET

(Fri.. 4/04, 15:30) go to St.Mark Hospital to have the port checked to see that there is no infection.

(Wed. 4/09, 09:30) go to St.Mark Hospital for an endoscopy and bone marrow scan.

(Thu. 4/10, 08:00) go to St.Mark Hospital for an EKG

(Fri. 4/11, 08:15) go to the cancer Center for 7 hours for the 1st chemo cycle.

Soni's Cancer Prognosis

3/29/08
We met with Dr. Graydon Harker, the oncologist, whom we both like on Friday 3/28/08. He is very detailed (he even admits to being a bit obsessive compulsive sometimes), thorough, patient, relates well to patients, and has a sense of humor. He drew us some very detailed pictures and explanations on both side of a sheet of paper. He said we have the best insurance with Medicare and TriCare for Life. He took the time to set us up with the numerous appointments needed to start the treatment. We will be able to receive most of the treatments and tests at the Cancer Center where Dr. Harker's office is located and at St. Mark Hospital just up the street from his office.

It is diagnosed with non-hodgkin lymphoma which is treatable. There are several test to complete this next week and we will start chemo on April 11th. There will be 6 - 8 cycles of chemo of 3 weeks each.

Updates will follow as needed.

Soni's Prognosis as of 3/20/08

Sunday 3/09 -- Soni felt a lump in her throat that was about the size of a banty chicken egg.

Monday 3/10 --She called for an appointment with Dr. Henry and he was concerned enough that he saw her that same day rather than scheduling her later in the week as usual. While seeing her he immediately called and scheduled a CT-scan and mammogram at St.Marks Hospital for Thursday 3/13 and an appointment with a surgon, Dr. Benjamin Kim on the same day.

Thursday 3/13 -- Dr. Kim examined her and found another large growth about the size of a grapefruit on the left side of her lower abdomen. The CT-scan also verified this later when the results came back. The mammogram came back clear.
As Dr. Henry suspected and Dr. Kim confirmed, it is a type of lymphoma.
Dr. Kim scheduled her for surgery on Monday 3/17 at 1:00 p.m.

Monday 3/17 --Dr. Kim removed the tumor in the neck and sent it off for a biopsy. We returned home that evening around 6:00 p.m.

Thursday 3/20 -- We had a follow-up visit with Dr. Kim who removed the large dressing from her neck and said the the suture was healing nicely. However, he had not received the report from the pathologist yet to determine what type of lymphoma it is which will determine the course of treatment to follow. He did say that they currently use chemotherapy rather than radiation.
He called and made an appoint for her to see the oncologist of Friday 3/28 at 3:45p.m. The oncologist is Dr. Graydon Harker.
All of this will probably put a crimp in her knee surgery which was scheduled for June 9.

1st shot at this!!!

Don't have a clue what I'm doing, but here goes our 1st blog posting just to see what happens.
Hopefully the 'puter won't blow up in my face!
(Posted by the "B" in "BS"... alias Poppy)