Saturday, May 31, 2008

5/31/08 Late Saturday Morning
Just spoke with Judy, she is doing much better. She talked with the oncologist who advised her that:
1. She was expecting to give her chemo at around 9:00 AM Sunday;
2. That most of her problems were coming from the cancer sites;
3. That they planned on doing chemo weekly for 3 weeks, then off a week and continuously repeating the pattern for awhile;
4. That she should begin to feel a difference in about 4 weeks; and
5. That she should feel like a new person in about 3 months.
5/31/08 Saturday Morning
When I left Judy last night she was eating some light foods, seemed to be feeling better and getting ready for her evening medications. Aunt June and Uncle Tom came to visit and had dropped food off at the house and so offered to bring anything from home that we needed. The hospital asked us to bring in her CPAP machine and medications, so that they could duplicate the dosages. They saved me a couple of hours of driving.

Judy is at the Huntsman Cancer Center, fourth floor, room 4507. Sorry I did not get the phone number. We are hoping that the antibiotics kick in good today and that she will be ready for chemo either today or tomorrow and be able to come home shortly afterwards.

Friday, May 30, 2008

5/30/08 Firday Afternoon Supplement
Judy thought that once she got the porta cath in, she would no longer need to have needles put in her arm. She could not have been more wrong. In order to pin down the infection source they needed blood drawn from two sites. The surgeon did not want the porta cath used for two more days, so they tried to draw blood from the midline. They had trouble with it, but finally got it to cooperate. Then they stuck her in the hand for the second site. They got about half the blood they needed and it clotted. Then they stuck her in the arm for the rest of the blood. So much for no more needles!
5/30/08 Friday Afternoon
Well, things did not go well this morning. Judy was so sick that we were 1/2 hour late starting out. When we got to the clinic she had a fever, so they said no chemo today.

We did learn that Judy's cancer is in stage 4, meaning that there is no cure. (By definition, stage 4 breast cancer is when the cancer spreads beyond the breast and associated lymph nodes.) The good news is that she has been in stage 4 since her hip cancer 11 years ago and she could yet live for years and years to come. No cure means that if something else doesn't kill her first, that the breast cancer will eventually kill her.

When they did the labs this morning they discovered that she has an elevated white cell count and abnormal liver enzyme test results. One possibility is that she has a touch of the flu, another is that she has developed an infection from the bile duct stint site, the portacath, the pancrease or the kidneys. They decided to admit her to the hospital for additional tests and to put her on antibiotics for a couple of days. They hope to be able to give her chemo before she is released.

A little later on our oncologist's partner came in and said he thought that the bile duct stint might have moved or closed off, so he has ordered more tests and feels that they might have to redo the stint. To early to tell, though. So it is another round of wait and see how the tests go and how she responds to the antibiotics.

Thursday, May 29, 2008

5/29/08 Thursday Afternoon
Yesterday was a difficult day for Judy. She was quite nauseated and stay flat on her back most of the day. Today was only slightly better.

We talked with her oncologist just a few minutes ago and were advised that Judy's biopsy looked most like breast cancer cells. That was the good news. The bad news was that the cancer was not hormone responsive, so she will have to have chemotherapy. They are doing one additional test (nu tu du or something similar) to see if she will be sensitive to a particular chemotherapy drug.

We are presently waiting for a call back from the oncologist, who is trying to fit Judy into her schedule tomorrow for plan development and the start of chemotherapy. Judy is most anxious to start the chemotherapy, as she literally feels worse and worse each day without any kind of treatment.

The oncologist's nurse just called back and Judy is scheduled to go in, in the morning at 8:30 am. She will do labs, meet with the doctor and then get her chemotherapy. It appears that they will be giving her a drug called Taxol once a week thru her portacath. (This time it will go in the midline, then they will pull the midline. From then on it will go in the portacath.) The portacath has to be flushed once per month, if not used. Since they will be using it weekly they will be doing all of the flushing. She will probably loose her hair, which is no big thing for her ... since she lost her hair when she was on chemo 23 years ago. Last time her hair grew back darker and more curly!

Tuesday, May 27, 2008

5/27/08 Evening
Today was eventful, Judy woke up quite nauseated ... which was probably from the stressful anticipation of the surgeries and I woke up so tired that I could hardly walk three steps without breathing so heavily I would have to stop and rest. I think I just had a touch of the flu, as I am feeling better this evening. We left for the hospital a little after 9 AM, after Judy got a blessing from me and John. We got to the hospital right on the money at 10:15 AM. They registered us and we thought we would visit a friend in the cardiac center while we were waiting to be called in. We mentioned this to the intake personnel and they said they thought we would be called in right away. There were probably 30 people waiting in the outpatient surgery room, but they called us first ... we weren't sitting for more than a minute or two. Judy was put in a "clean room" to prepare. They, of course, had her put on one of their gowns (reminded me of the dance in the movie Parent Trap, where one twin cut a pie shaped piece out of the back of the other twin's skirt, without her know it ... which meant that she went back into the dance missing a critical piece.)

Since it is a teaching hospital there was a string of nurses, anesthesiologists, doctors and surgeons that poured through her room asking questions, feeling her neck, hooking up lines, flushing her midline and trying to decide how best to approach the two procedures. When the actual surgeon came in, he felt her neck and mentioned that it was not a single lymph node but rather an aggregation of them. I asked if he was going to remove it entirely. He said not, because it would leave too big a hole in her neck, that he was only going to take a good biopsy.

They did not put her under general anesthetic since she has heart breathing problems already, just gave her enough anesthesia to keep her from knowing what was going on. The teaching surgeon put the porta cath in, but let one of the resident's take the biopsy. They were right on schedule, getting her in a littler before 12:15 PM and getting her into recovery by 1:10 PM. The surgeon came out and said that both procedures went well and that she tolerated them well. She was in recovery about 20 minutes, when they put her back in another "clean room". She was there another 30 minutes or so while they prepared her release instructions and gave her a double dose of pain killers (Lortab). Aunt Bunny and Uncle Barry came to see how she was doing, and brought her a cute little pot of yellow flowers. They were shown into the recovery room and stayed with us until we left the hospital.

Judy got home about 3:30 PM or so and went directly to bed and mostly slept until about 7:00 PM. She got up and ate dinner (potato soup that Amy made) and visited a little while before going back to bed.

Now we wait again, two or three days for the pathology reports to come back on the new biopsy. Hopefully the report will tell us what type of cancer it is and we can then begin treatments.

While there, I made an appointment with one of the cardiologists in their Cardiology Center, hoping that I can get a little better treatment for my heart (which has lost a full third of its pumping capacity during the last six months since I had the last two stints put in ... down from 75% to 42%). Only time will tell!

We saw Adam Nelson while there, a couple of times. Once in the cardiology unit where he works and the second time when he brought one of his patients out to the valet parking where we were waiting to pick up our car. He said that I would really like my new cardiologist! I sure hope he is right!

Monday, May 26, 2008

5/26/08 - Monday Evening
Today was an average day. Judy slept quite a bit, but ate well and is looking forward to tomorrow's biopsy. Surgery is scheduled for 12:15 PM, however it will probably be the end of the week before we get the pathology report back and can start treatments. She took her last painful belly shot this morning and won't resume again until tomorrow night. She will have be on them for three more days until the coumadin comes to full strength.

Sunday, May 25, 2008

5/25/08 Evening
Today was a very wearing day as we had all of the kids and grandkids come back over for individual family pictures in their Sunday best at 11:00 AM, fed them lunch and had them join us for church at 1-4:00 PM. Judy was too exhausted to join us for church. After church they all came over to the house again and Uncle John took them all for scooter rides. They then came in, ate dinner and had pie for dessert. We talked and talked and Aunt Bunny and Uncle Barry came over and they visited with us and remembered lots of fun things with us. We are both very tired, but have quite enjoyed the day.

John (our middle son) and Amy (his wife) and their three children will be spending the week with us. They are going to help us care for two of our oldest daughter's children, Jonathan (8) & Gabrielle (6) while mother and dad are enjoying some time with his parents.

We thank everyone for the large meal that was brought in on Friday night. We ate on it then, all day Saturday and part of Sunday. The grandkids so enjoyed the fresh fruit and just ate on it and ate on it to their little hearts' content.

Saturday, May 24, 2008

5/24/08 Morning
Judy had another average day yesterday. She is still getting the painful Lovenox shots in her belly both morning and evening, to keep her blood thin until after the surgery next Tuesday at 12:15. We also flush her midline with a saline solution and herprin every day. Actually we have to flush twice a day to keep the line clear.

She does ok as long as she takes her pain and nausea medicatons and doesn't overdo it.

All of our children and grandchildren are coming in today to check up on grandma, so it is going to be a very busy day!

Thursday, May 22, 2008

5/22/08 Evening
Judy had a so so day. It was painful between pain pills, and she tired easily ... but made it through the day in reasonable condition.
5/22/08 Morning
Judy slept well after taking all of her pills last night. She woke up this morning at around 7:00 AM nauseated and in pain, then took her pills and went back to sleep. She just woke up a second at 9:45 AM and is feeling much better.

Wednesday, May 21, 2008

5/21/08 Wednesday
Not a very good day for Judy. She was sick and in pain a good part of the day. She spoke with her oncologist and she ordered Judy on pain killers, anti-nausea meds and medication for her upset stomach. Judy felt better for several hours after taking all of the meds. Her oncologist said she would see Judy tomorrow and even start therapy if she continued to feel poorly.

Tuesday, May 20, 2008

Just learned that Judy's surgery has been scheduled for next Tues, instead of this Fri as we had hoped.

She is doing a little better this afternoon, after having thrown everything up this morning.
Last night was not a good night for Judy as she was very tired. This morning she is still quite tired and has considerable nausea.

We spoke with the scheduler for the surgeon this morning and learned that he will be out of town on Wed & Thur. So, she probably won't be able to have the biopsy until Friday or after.

Monday, May 19, 2008

5/19/08 Evening Update
The Bad News: We are still on the runway! The pathology report on the biopsies was available, but showed very little new information. They were needle biopsies and simply did not have enough tissue to make a usable diagnosis. The diagnosis made was that the biopsies contained "adenocarcinomas" (cancers that grow in glands and organs). This means that we still do not know if it is pancreatic, liver or simply lymph node cancer and therefore still cannot start treatments.

They are going to leave the midline IV in until the next surgery. (This means daily flushes with saline and heperin.)

She is also going to have to continue the painful stomach shots of Lovenox twice a day for at least another 5 days. (They cost nearly $70 each and she is in the Medicare gap of prescription drug coverage, so there will be no insurance relief.)

The Good News: Her blood test showed that her kidney function is continuing to improve.

have ordered a complete removal of the lymph node on her neck, so that they can be sure they have enough tissue for a more definitive diagnosis. It won't even be scheduled until tomorrow morning, and not completed until Wednesday at the earliest. Then we will have to wait until Friday or Saturday to get the results. This means that treatments will not start for at least one more week.

While she is under anesthesia for this surgery they are going to place a porta catheter in her chest wall, so that they won't have to keep sticking needles into her only good arm for blood draws, medications or other procedures. They will all go into the porta cathether for the rest of her life!

They are still considering putting her on hormone therapy for treatment. These would be oral medications.

So, again, it is just wait for the next procedure!
Just got word from Judy's surgeon that she has been scheduled for next Tues, not this Friday as we had hoped.

Judy is doing a little better this afternoon, after throwing everything up this morning.
Judy ate a nice, full meal last evening and rested well last night.

She is still in pain, she thinks from the tumors pressing on her organs, and is quite tired. She hopes to be able to get a few things done around the house today. She doesn't need to cook or clean up, but does want to read some mail and organize her desk a little. We'll see, as she needs to save strength to make a trip to Salt Lake later today.

We are scheduled to go into the Huntsman Cancer Center in Salt Lake today to have a blood draw and then have the midline removed. She is hoping that we will get the results of the pathology reports prior to the midline being removed, so that it can be used for at least the first chemotherapy treatment.

Sunday, May 18, 2008

5/18/08 - Late afternoon
Judy has pretty much slept all day. She thought she might go to church for awhile, but when time came to go at 1:00PM she was just too tired to go. She is gradually recovering from her stay in the hospital and all its attendant procedures. We look forward to actually beginning to treat the cancer and make some progress there as well.
Judy is doing better today. The got a good night's sleep (in her waterbed) and the pain has subsided some. She will probably rest most of the day and hopefully by Monday will feel well enough to see the Oncologist (cancer doctor) and start her Hormonetherapy or Chemotherapy, whichever they decide to do after the pathology comes back.

At this point we believe that the cancer involves only her lymph system and is a metastasis from her breast cancer 23 years ago. They say that such a metastasis after this many years is unusual, but not unheard of. We hope it is from the breast cancer, as this is the easiest to treat on the one they have the greatest success with.

As always there is ambiguity. Her GI Surgeon said that the cancer in her abdomen was ominous looking and her Oncologist said that she thought everything would be treatable. Maybe this is the difference between a man being brutally honest and a woman trying to play down the trauma.
While no stents were required in Judy's ureters (the tubes between her kidneys and bladder), her kidneys are having some difficulty absorbing the contrast dies from the various test procedures.

She is getting quite sore and is still on pain medications for the pancreatitis.

She was released to come home from the hospital around 3:30 PM.

They left the midline (deep IV) in just in case they need to do additional procedures. Judy is hoping that it will last long enough to get at least one chemotherapy treatment early next week. (A regular IV is usually good for about 72 hours. However, hers were collapsing in less than 12 hours. So they decided to put in a highly sterile midline, which can last up to two weeks.) The midline has to be flushed with a saline solution and heprine every day. The Cancer center gave me three days of heprine, but only one day of saline. So I tried to buy two more days a local pharmacy. They did not carry the saline solution, so I ended up going to the American Fork Hospital and begging the extra two days.

They did not put her back on her blood thinners (for her heart), just in case they needed to do additional procedures or take additional biopsies after they got the pathology reports back. (It takes a week to get off the blood thinners.) That meant that she had to go back on those painful belly shots of Lovenox to keep her blood from clotting. (She had already had one clot after the heart stents. This was about a month ago and was in her calf. So, in addition to the Plavix, they had to put her on Coumadin. Both are generally thought to be blood thinners, but are actually anti-coagulants.)

She is very sore and very tired and will probably sleep the rest of the afternoon and evening.

They did not put the stents in Judy’s ureters. They got some clues that the kidneys were shrinking and so they did a cat scan and found they were doing better and decided that the stents were no longer necessary.

The yellow coloring in Judy’s eyes and skin is receding and she has tolerated the testing quite well. The nausea and itching are much better and she is more comfortable. She was actually allowed to eat for the first time since Tuesday and really enjoyed the few bites she was able to eat.

We still do not have the pathology studies of the biopsies, so we still don’t know what type of cancer she has. Maybe they will be ready tomorrow, if not early next week.

Judy has developed pancreatitis (an inflammation of the pancreas), probably from the GI surgeons poking around in the vicinity. She is on pain medications for this.

If the pancreatitis gets better she will be released tomorrow afternoon to go home.

We expect to go back on an outpatient basis next week and begin whatever treatments are determined to be appropriate.


They did not put the stents in Judy’s ureters. They got some clues that the kidneys were shrinking and so they did a cat scan and found they were doing better and decided that the stents were no longer necessary.

The yellow coloring in Judy’s eyes and skin is receding and she has tolerated the testing quite well. The nausea and itching are much better and she is more comfortable. She was actually allowed to eat for the first time since Tuesday and really enjoyed the few bites she was able to eat.

We still do not have the pathology studies of the biopsies, so we still don’t know what type of cancer she has. Maybe they will be ready tomorrow, if not early next week.

Judy has developed pancreatitis (an inflammation of the pancreas), probably from the GI surgeons poking around in the vicinity. She is on pain medications for this.

If the pancreatitis gets better she will be released tomorrow afternoon to go home.

We expect to go back on an outpatient basis next week and begin whatever treatments are determined to be appropriate.

Thursday, May 15, 2008


Judy went into surgery around 4:15 this afternoon and was finished around 6:30pm. After resting in the recovery room for about an hour we met her up in her room. She did very well in surgery and they were finally able to get that stint in her bile duct. So she should lose that yellow color and be back to her pink self in no time.

A few minutes after we got into the room another Dr. came in and said she had fluid in her kidneys and they would need to bring her back to the OR tomorrow for 2 more stints. He also said no food until after the surgery was over. For those counting, she hasn't been allowed to eat since Tuesday at midnight. I could tell she was feeling a little better because she gave every nurse who came in a lecture about starving her to death!LOL

So they tried to biopsy the lymph node in her neck this morning, but the samples they got were no good. The pathologist stayed for the surgery so he could try again while she was out. He also poked a needle through the wall of her bile duct and got a sample of the lymph nodes around her pancreas. He said that was definitely cancerous, he also assumes her neck is cancerous but can't be definitive until he gets the labs back.

Her pancreas itself seemed to look just fine, as well as the interior of the bile duct, but he took a brushing anyway so we can know for sure. At this point they are going to assume its breast cancer that has just metastasized in other locations. It's the most probable and our best shot at treating her.

I asked the Dr to stage her Cancer for me but he was unwilling to do so until he knew for sure what kind of Cancer it was. I also asked him what he thought it was if not breast Cancer and he refused to answer. What can you do? He said since tomorrow is Friday we would probably not learn where the Cancer originated until Monday. If I'm able to get some information about it tomorrow I will post an update. We expect mother home tomorrow evening at the earliest, and quite possibly not until Saturday.

Update 5/14/08

5/14/08 – Wow, what a day! We went to the University of Utah Hospital today to meet with Dr. Nelson (a general surgeon) with the expectation that he would biopsy the swollen lymph node in Judy’s neck. After a brief discussion he informed us that we had come to the wrong doctor. He said that the swollen lymph node was just a small part of a larger problem and that we needed someone else to manage the larger problem, i.e. an oncologist.

We told him that we had tried to get in to see Dr. Saundra Buys (a highly recommended oncologist at the Huntsman Cancer Institute) but had been told that she was not accepting new patients and even then she was booked out a month. We decided that that was too long to wait and begged the scheduler to find someone who could see her sooner and biopsy her lymph node and that we had then been referred to him. He said that he knew Dr Buys well and that he would give her call. He came back after calling her and said that she would see Judy immediately if we would go over to her office right then.

We spent and hour or so with Dr Buys and she said that she would manage Judy’s care and that the first two items of priority were to get the bile duct opened up and to properly diagnose the problem. We then told her we had an appointment on June 2nd to have Dr. Adler redo the procedure to open the bile duct and that we had complained that the appointment was too far away without any progress in getting it moved up. She said that she would call Dr Adler, that he owed her a favor or two. She came back after the call and reported that if Judy would be admitted to the Huntsman Cancer Institute Hospital that he would do the surgery the next afternoon.

Talk about answers to prayers!

She is in Room 13 on the 4th Floor of the Huntsman Cancer Institute Hospital. Her phone no. is 587-4513.