I don't think there is anyone who doesn't know by now and I didn't intend to write on this again. My sister Maries suggested I make one final entry so I will but I will make it brief.
Kathy went suddently downhill about two weeks ago. We went to the hospital due to trouble breathing and she had turned yellow. I was more worried about the yellow as it reflected liver issues which is where the cancer had been detected several years ago. She had fluid drained from next to her lung but the blood tests came back showing trouble in the liver. We were allowed to go home for Sunday but were told to call our oncologist on Monday to discuss further.
Our oncologist was on vacation that week. Kathy could barely stay awake on Sunday but managed to go to church and hear Jacob's mission return address. On Monday the oncologists finally called and told me that they were sorry to give me such bad news and that they really wanted to talk to us in person. They wanted us back at the hospital.
Once we got there we were told that the liver numbers were very bad and that her "time was short". Once we were admitted to the hospital we tried to find out what "time is short" means but it took us until Tuesday afternoon to find out that it meant a few days to two weeks. Unfortunately, Kathy was hardly able to pay attention and was mostly asleep so I'm not sure she got it all but she understood most of it.
The doctors did their best to get Kathy well enough for a short flight to Utah for the wedding but it didn't seem likely. On Wednesday her kidneys failed and we took her home late Wednesday night. Josh and Tara flew home to see mom and just made it before she couldn't focus on anything else. She passed away at 9am Thursday morning.
I want to thank Mark Forsyth's family for setting up this blog for me. It made it easier for me to track the journey. Thank you all for reading along on Kathy's journey.
Monday, August 23, 2010
Wednesday, July 28, 2010
Radiation and Family
Kathy began radiation last week on the large tumor above her right clavicle. It affects her sholder and next and has been pinching the nerve causing numbness and loss of function in the right arm and hand. Considering that she is right handed the loss has been significant and a real burden. We are glad that her Doctor decided to put a hold on chemo and radiate the spot to shrink it faster.
Once Kathy had seen the radiation guys she knew a little more. It would be easier in time and energy and pain than last time but she wouldn't see immediate results. It may take a month after she completes the 12 days (next Thursday) before she starts to see the tumor shrink. We are just hopeful the tumor does shrink. The bad news is that they can't say that she will regain all or even a part of the use of the arm and hand. When nerve damage is done it isn't easily repaired. We aren't sure if nerve damage has been done or if they have just been stretched. Time will tell. In the meantime we have to be hopeful and realize that if nothing else it will stop or slow the growth of the big tumor.
Kathy hasn't had chemo for two weeks but she still has the same symptoms as if she was. She is nausious some days, tired every day and caughing off and on. Weird. It could be just a general decline but I don't want to think about that. Maybe it is just residual chemo.
We did see some positive results on the chemo so we are anxious to be done with radiation and start the nasty stuff again. It is a two edged sword, cutting back on the tumors but also cutting back on your lifestyle.
The boys all were here for Jacob's mission return. We don't have six sons home often but it was a fun and busy weekend last week when Jacob came home and Josh came home with his fiance (Tara) for the week. We had 10 people sleeping everywhere in the house. I was concerned Kathy would overdue but she has been good about naps and going to bed at a reasonable time.
Josh and Tara leave on Saturday. We will go to Utah in two weeks to the wedding. See, there are some good times amid the bad.
Once Kathy had seen the radiation guys she knew a little more. It would be easier in time and energy and pain than last time but she wouldn't see immediate results. It may take a month after she completes the 12 days (next Thursday) before she starts to see the tumor shrink. We are just hopeful the tumor does shrink. The bad news is that they can't say that she will regain all or even a part of the use of the arm and hand. When nerve damage is done it isn't easily repaired. We aren't sure if nerve damage has been done or if they have just been stretched. Time will tell. In the meantime we have to be hopeful and realize that if nothing else it will stop or slow the growth of the big tumor.
Kathy hasn't had chemo for two weeks but she still has the same symptoms as if she was. She is nausious some days, tired every day and caughing off and on. Weird. It could be just a general decline but I don't want to think about that. Maybe it is just residual chemo.
We did see some positive results on the chemo so we are anxious to be done with radiation and start the nasty stuff again. It is a two edged sword, cutting back on the tumors but also cutting back on your lifestyle.
The boys all were here for Jacob's mission return. We don't have six sons home often but it was a fun and busy weekend last week when Jacob came home and Josh came home with his fiance (Tara) for the week. We had 10 people sleeping everywhere in the house. I was concerned Kathy would overdue but she has been good about naps and going to bed at a reasonable time.
Josh and Tara leave on Saturday. We will go to Utah in two weeks to the wedding. See, there are some good times amid the bad.
Wednesday, July 14, 2010
New Game Plan
Kathy and I, David and Kathryn, Daniel and Matthew went to the Hardy reunion in Idaho last week. Kathy had a few fevers leading up to the day we left but nothing serious and she felt just well enough to make the trip. Fortunately, with all the drivers she was not required to drive at all and slept a lot. We also stayed in a motel most of the time to make sure we could get a nice quiet place to sleep as long as possible. That worked out well for us and we slept in several days.
The reunion was very nice and Kathy had no side effects except fatigue.
The external tumors have not slowed down which is an indicator to us that the current chemo either hasn't had time to work or isn't working. She had a doctor visit yesterday and I noticed the night before that there just could be a little fading of the external tumors. We were hopeful but at the same time Kathy's use of here right arm (the one with lymphodema) is hardly usable and aches a lot.
Dr. Chew looked it all over and believes the arm issue is due to the increasing tumor in her next and clavicle area and has recommended radiation of the area. This is good as it will help reduce the size of that one tumor but it also means being off chemo for as long as the radiation is necessary.....a two edged sword. Still, we are optimistic and believe it is the right process. The radiation will take place in Cameron Park which is only a few miles from our home rather than the 35 miles down to UC Davis Medical center.
Kathy took her chemo yesterday and is scheduled to go to radiation on Friday. She is resting at home. The next couple days will be her "sick" days which will hopefully end just as radiation starts. Our biggest hope is that she will regain the use of her right arm from this radiation and then the chemo can address the other tumors. We will see.
If it all does't go smoothly then after Josh's wedding next month she will begin a more difficult chemo treatment.
In case you were uncertain, cancer and the fight against cancer, is no fun.
The reunion was very nice and Kathy had no side effects except fatigue.
The external tumors have not slowed down which is an indicator to us that the current chemo either hasn't had time to work or isn't working. She had a doctor visit yesterday and I noticed the night before that there just could be a little fading of the external tumors. We were hopeful but at the same time Kathy's use of here right arm (the one with lymphodema) is hardly usable and aches a lot.
Dr. Chew looked it all over and believes the arm issue is due to the increasing tumor in her next and clavicle area and has recommended radiation of the area. This is good as it will help reduce the size of that one tumor but it also means being off chemo for as long as the radiation is necessary.....a two edged sword. Still, we are optimistic and believe it is the right process. The radiation will take place in Cameron Park which is only a few miles from our home rather than the 35 miles down to UC Davis Medical center.
Kathy took her chemo yesterday and is scheduled to go to radiation on Friday. She is resting at home. The next couple days will be her "sick" days which will hopefully end just as radiation starts. Our biggest hope is that she will regain the use of her right arm from this radiation and then the chemo can address the other tumors. We will see.
If it all does't go smoothly then after Josh's wedding next month she will begin a more difficult chemo treatment.
In case you were uncertain, cancer and the fight against cancer, is no fun.
Monday, June 21, 2010
Kathy in Hospital but Doing OK
Kathy has been having respitory problems for a couple months along with everything else. On June 8th she went in and had the fluid taken out of the left side around the lung (not in the lung) and we thought that would be all she needed as it seemed to be helping. Last Tuesday she had her new chemo treatment and on Wednesday she was sick which is what they said might happen the first time. She actually threw up for the first time in all her chemo treatments.
Thursdsay she was feeling somewhat better and Friday morning she felt a lot better. But after lunch on Friday she started feeling sick again and threw up again. Very unusual. As she was preparing for bed she took her temperature and it was 102. She called the on-call oncologist who suggested we go into the Emergency Room. We got there at about 10:40pm (does anyone go there in the daytime?) and she was quickly (in ER time, not for anywhere else) admitted to the Emergency Care Room with a separate room for those who need to be isolated. They soon determined she was not nutropenic (low white blood cell count) so not such a risky situation. However, even after getting the fever down she was still not feeling well and they weren't sure about the lungs and fluids etc. She got a big needle put into her back to take out some of the fluid in the right side (I was right there and watched intently) to be tested for infection.
Finally at 4am they told us she was going to be admitted and no more tests for the night. I went home and slept til 9:30. When I got up Kathy had just called. She had just gotten in to her room. I thought she was on her way basically when I left. Sheesh!!
Anyway, she has been there for a few days. They took a CT scan last night and determined that she has a lot more fluid in the right side and it needs to be drained today or tomorrow morning. They suspect some sort of infection in the lungs and the antibiotics are working on that. I don't think she'll be home until Wednesday at the earliest but all is looking pretty good.
What a roller coaster ride we are on.
No chemo this week but next infusion is next Tuesday.
Thursdsay she was feeling somewhat better and Friday morning she felt a lot better. But after lunch on Friday she started feeling sick again and threw up again. Very unusual. As she was preparing for bed she took her temperature and it was 102. She called the on-call oncologist who suggested we go into the Emergency Room. We got there at about 10:40pm (does anyone go there in the daytime?) and she was quickly (in ER time, not for anywhere else) admitted to the Emergency Care Room with a separate room for those who need to be isolated. They soon determined she was not nutropenic (low white blood cell count) so not such a risky situation. However, even after getting the fever down she was still not feeling well and they weren't sure about the lungs and fluids etc. She got a big needle put into her back to take out some of the fluid in the right side (I was right there and watched intently) to be tested for infection.
Finally at 4am they told us she was going to be admitted and no more tests for the night. I went home and slept til 9:30. When I got up Kathy had just called. She had just gotten in to her room. I thought she was on her way basically when I left. Sheesh!!
Anyway, she has been there for a few days. They took a CT scan last night and determined that she has a lot more fluid in the right side and it needs to be drained today or tomorrow morning. They suspect some sort of infection in the lungs and the antibiotics are working on that. I don't think she'll be home until Wednesday at the earliest but all is looking pretty good.
What a roller coaster ride we are on.
No chemo this week but next infusion is next Tuesday.
Friday, June 11, 2010
New Drug, More Procedures
We found out the last chemo wasn't working so Kathy begins a new treatment on Tuesday. The CT scan also showed a lot of fluid build up around the lung. Not in the lung but in some sack around the lung (who knew there was a sack around the lung?). She has been coughing a lot and uncomfortable when getting up and lying down so it really bothered her. Her doctor told us that she could go in and have it drained. A routine procedure 99% of the time.
My problem with routine procedures is that they aren't. Kathy rarely if ever has a routine recovery from routine procedures. Infection, ineffective, needs to be redone, stiffness, soreness, errors. That is our experience with hospitals and treatments. When the routine procedure involves putting a needle thru your back and into the sack around the lung it doesn't sound so good. Especially when the 1% issue is usually that the needle goes too far and they puncture the lung. That is bad as it collapses the lung.
So, after feeling worse and worse after the doctor visit last week, Kathy decided she needed the stuff drained. We went in on Tuesday and it went pretty well. Not as much pain as we feared (is it ever?) and more fluid then we had imagined. They only do one side per day so they drained the left side and out came 1/2 liter of ugly looking fluid. It was amazing to watch it shoot into the container but sorta gross and depressing as well. The other side has almost as much. She is still considering whethor to do the other side or not.
So Tuesday new chemo. Can't wait. One of the side effects: tiredness. She is getting sorta down by all the tiredness. She has to pull back from her temple service and that really bothers her. She doesn't feel like she has much fun but hey, isn't laundery, cooking and taking care of me fun? Hmmmm. I've suggested she help at the library or some other service that doesn't require such a precise schedule. Usually my suggestions aren't too good.
We've also been troubled by her sister Darlene's emergency surgeries and recovery process up in Seattle. Kathy wants so badly to go and help but can't because she has treatments and problems right now where she needs to stay close to UC Davis Medical Center. We'll see how that goes, she is anxious to go. We are praying for Darlene's recovery.
My problem with routine procedures is that they aren't. Kathy rarely if ever has a routine recovery from routine procedures. Infection, ineffective, needs to be redone, stiffness, soreness, errors. That is our experience with hospitals and treatments. When the routine procedure involves putting a needle thru your back and into the sack around the lung it doesn't sound so good. Especially when the 1% issue is usually that the needle goes too far and they puncture the lung. That is bad as it collapses the lung.
So, after feeling worse and worse after the doctor visit last week, Kathy decided she needed the stuff drained. We went in on Tuesday and it went pretty well. Not as much pain as we feared (is it ever?) and more fluid then we had imagined. They only do one side per day so they drained the left side and out came 1/2 liter of ugly looking fluid. It was amazing to watch it shoot into the container but sorta gross and depressing as well. The other side has almost as much. She is still considering whethor to do the other side or not.
So Tuesday new chemo. Can't wait. One of the side effects: tiredness. She is getting sorta down by all the tiredness. She has to pull back from her temple service and that really bothers her. She doesn't feel like she has much fun but hey, isn't laundery, cooking and taking care of me fun? Hmmmm. I've suggested she help at the library or some other service that doesn't require such a precise schedule. Usually my suggestions aren't too good.
We've also been troubled by her sister Darlene's emergency surgeries and recovery process up in Seattle. Kathy wants so badly to go and help but can't because she has treatments and problems right now where she needs to stay close to UC Davis Medical Center. We'll see how that goes, she is anxious to go. We are praying for Darlene's recovery.
Wednesday, May 26, 2010
CT Scan This Week and Changes Next?
Kathy and I are both pretty sure this chemo drug just isn't doing it. The tumors do not seem to be shrinking and she is always tired. She has gone in for a CT scan today which they will compare to the results from six weeks ago and we'll see what is happening. She isn't scheduled to visit her doctor for another two weeks but we think she might be able to know the results before her next infusion next Tuesday. No sense getting a drug that isn't working, right?
Monday, May 17, 2010
Tiredness Tiredness and more Tiredness
Well, if you had one word to describe how Kathy has been feeling over the past month it is tired. She is always tired with the possible exception of the day after she receives her chemo treatment and then she is on a chemo drug high. However, if she works at the temple for four hours (which she does) which she does the day after chemo, then she is tired at the end of the day. Naps are crucial.
She was sooo tired and not feeling well two weeks ago when she went in for her infusion that they cut back the chemo by 20%. She did a little better. Last Tuesday we went in to see the Dr. which we always do on the week "off" and discussed the progress. Kathy and her Dr. decided to keep the chemo at the reduced 20% reduction and to get more CT scans in three weeks. From that we will be able to see if there are any changes and if we need to either increase the dosage again, change drugs, or keep on going with this drug.
We have a few people pop over and bring dinner occasionally. We really have capable people at home but Kathy still does almost all the cooking. I occasionally do either Lasagna or Meatloaf but really she does OK as long as she gets her sleep at night and her naps.
The one problem with her sleeping is that some nights she just can't sleep. So she is up for hours in the middle of the night and can't relax. She takes something for that and usually it works but last night it didn't. I hope she isn't building up a resistence. What are you going to do?
We continue to enjoy having Dan and Mike home. Kathryn went to NY this past weekend so we even had David at home. Nice.
She was sooo tired and not feeling well two weeks ago when she went in for her infusion that they cut back the chemo by 20%. She did a little better. Last Tuesday we went in to see the Dr. which we always do on the week "off" and discussed the progress. Kathy and her Dr. decided to keep the chemo at the reduced 20% reduction and to get more CT scans in three weeks. From that we will be able to see if there are any changes and if we need to either increase the dosage again, change drugs, or keep on going with this drug.
We have a few people pop over and bring dinner occasionally. We really have capable people at home but Kathy still does almost all the cooking. I occasionally do either Lasagna or Meatloaf but really she does OK as long as she gets her sleep at night and her naps.
The one problem with her sleeping is that some nights she just can't sleep. So she is up for hours in the middle of the night and can't relax. She takes something for that and usually it works but last night it didn't. I hope she isn't building up a resistence. What are you going to do?
We continue to enjoy having Dan and Mike home. Kathryn went to NY this past weekend so we even had David at home. Nice.
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