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Dad’s Illness

Dad Update from Mom: 20100616

Hi Everyone:
 
As most of you know, Bill was diagnosed with metastatic cancer to the liver at the end of 2008; this was a metastasis from his original ampullary cancer.  He received chemo for all of 2009 and intermittent scans showed that the original lesions were slowly reducing in size.  At the end of 2009, however, this changed and new lesions were also discovered.
 
Bill was placed on a new chemo treatment which was much harsher than the previous.  He not only continued to have problems with his food having no taste but he developed “pins and needles” (neuropathy problems) when eating or drinking anything cold; he even experienced this when handling anything cold in his hands.  In addition, his other side effects were very hard on him and he lost a lot of weight (down to 129 lbs), had no energy or strength and was generally very weakened and we feared for his overall health.  However, in March of 2010 the scans showed very little evidence of the original or subsequent lesions and no new cancer.  We were elated with the news and after much soul searching, decided that he would go off the chemo for a short while so he could regain some weight and strength.
 
Bill has been off the chemo since late March, 2010.  He has felt sooo much better.  Most of the taste of his food has returned and his neuropathy has decreased quite a bit.  He is eating non-stop and while he didn’t regain a LOT of weight (his current weight is 145 lbs) you can see a difference and he has regained a lot of his energy and strength.  He has been very happy these past few months and seems to do better daily, despite some persistent pain which we think is a result of the major surgery he had in early 2008 for the original cancer.  Being off the chemo however, has been hard too; you just can’t help worrying out what “might” be going on inside!  We were very apprehensive about returning to the doctor this month for the most recent scan results.
 
Happily, the results remain the same; there is very little evidence of the disease.  What they do see, they believe is the remains of the previously treated lesions.  The doctor said we “might” be able to consider this as a remission of the disease, but it would still require constant vigilance and oversight.
 
So, here we are today, almost 2 1/2 years since Bill’s initial diagnosis, very hopeful again.  Bill will remain off the chemo until the next scans which are scheduled for late August.  Hopefully he’ll gain more weight and strength during that time so that he is better able to handle the chemo if it becomes necessary to go back on it in the future.
 
We appreciate so much all of your concern, thoughts and prayers for us during these difficult years.  We hope that you will continue to keep us in your prayers. 
 
I apologize for taking this method of updating you because I know many of you are STILL waiting for an individual response since my last update, but it’s just been a really tough year for both of us.  Since my surgery in January, my health has just been up and down with a myriad of complaints that no one seems to know what to do with.   I have had absolutely no energy and have been very weak with walking difficulties; my physical therapy on my arms had to stop because I was unable to continue them so consequently, I still have very little use of them.  I spend very little time on the computer, and then it is mostly to just read to keep up with what is going on with most of you. 
 
Thankfully, during my worst days, Bill was feeling well enough to take care of me.  I really don’t know what we would have done otherwise.  I have recently been feeling a lot better and seem to be improving.  I am walking better and have a little more energy.  I am seeing some new doctors and am hopeful for a full recovery eventually.  In the meantime though, please understand that it’s not that I don’t care; I just have to conserve what energy I have to keep up with what has to be done here.  So my response to any emails will not likely improve soon!
 
Again, thank you all.  You’ve been great and so supportive.  We are so happy to share this good news with you all!!
 
Love,
 
Betty and Bill
Mom & Dad

Mom & Dad

Dad Update – From Mom – 20100408

Dad was doing great in 2009 with his chemo. It didn’t seem to be bothering him a huge amount and every three months the scans showed the cancer lesions getting smaller. At the end of 2009 though they didn’t change at all and several more appeared. It was pretty disheartening news.

The Doc put dad on different chemo and he’s had a rough time with it. He’s lost a lot of weight. They went in for the results of the first scan since starting the new chemo on Tuesday. The news was fantastic. :)

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From Mom:
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Hi everyone!!

Bill and I got the results from his latest CT and PET scans yesterday. The doctor says that the lesions they saw on his liver from the previous scans are now gone. Also, his original lesions cannot be seen except for v ery vague enhancements.

Needless to say, we are delighted with the news. We had expected bad news since the new lesions showed up in January. They changed his chemo at that time and he has been having a tough time of it. He has lost a lot of weight (is down to 145 lbs right now) and has been experiencing neuropathy in his hands and mouth area, which has made it difficult for him to eat.

He will be continuing with the same chemo, at least for the next three months, but the doctor said it can be adjusted if necessary to relieve some of the effects.

Thank you, everyone, for all your prayers, good thoughts and concerns. We are hoping that things conintue this way and that he soon regains someweight.

Betty

Dad on Honeymoon - 1958

Dad Update – From Mom – 09/09/09

Happy News

This month, one year ago, Bill got a CT scan which showed that his cancer had returned as metastasis to his liver. It’s hard to believe that it’s been a year already. Frankly, neither Bill or I were sure that he would be around for another year!!

Bill’s most recent CT scan shows that his liver lesions are continuing to shrink and there is no evidence of any new lesions. In addition, his tumor marks, which have been remaining steady, are starting to drop. This is VERY good news.

In addition, Bill’s pain has decreased, he is taking less pain mediction and he said yesterday that this week is the best that he has felt in more than a year….probably since before his initial surgery in March, 2008. Needless to say, we are both very pleased, as is Bill’s oncologist.

Our plan now is to continue with the chemotherapy which he is on now until it either stops working or there is no evidence of disease. Bill will continue to have CTscans every three months to monitor his progress.

We can’t thank you enough for all of the prayers, positive thoughts and good wishes which have been sent our way. I believe you all have helped to make this possible.

Betty and Bill

Mom & Dad - Honeymoon - Miami Beach - 1958

Dad Update – From Mom – 20090323

Good news Today

We saw Bill’s doctor today and he said that the CT scan shows that the smaller of Bill’s tumors has reduced at least 50% since the CT scan done in Oct. 08 which first showed the metastasis. The larger lesion seems to have decreased somewhat in volume but very slight.

This is great news, not only because of the decrease in size and no new growth, but the fact that the lesions most likely grew in the time between the CT scan done in Oct and when the chemo was finally initiated in January. This makes me think that if we had had a CT scan done just prior to starting the chemo, we would have seen an even more remarkable reduction in size.

Soooo, the chemo seems to be working at the present time, so he will be continuing his treatments. The MRI that was done on his lumber spine showed no effects of the cancer but there is considerable degenerative disc disease and several bulging discs, so this is probably what has been causing the pain in his back.

It is nice to finally get some good news. Bill will continue his weekly chemo program in 3 weeks on and one week off cycles for the next three months and then will get another CT scan.

I won’t be updating this page until we get the results of the next CT scan in June, unless there is another change before that time. Thank you all for your continued thoughts and prayers.

Betty

 

Update On Dad – From Mom – 20090220

We’re Hanging in There

Bill’s hanging in there. He just finished his second cycle of chemotherapy but has had a couple of bad weeks with a lot of back pain. He’s going to have an MRI done of his spine on Monday to see if there is a problem there. If they find something the doctor said they can probably zap it with radiation and should be able to aleviate the pain.

Once he finishes his third cycle of chemo, they’ll do another CT scan to see if the treatment is working or not. That will be at the end of March.

Every once in a while he’ll feel pretty good and I can get him out to the store or for a ride; other than that, he just basically sleeps, reads and naps.

Hope everyone is doing well and making it through the rough northern winter this year. Spring is in the air down here; weather is getting nicer and that makes things much better. Thanks for all your prayers and thoughts.

Betty

Bill & Betty - First Christmas - 1958

Update On Dad – From Mom – 20081126

Hi Everyone….

We had a great time on our 50th anniversary cruise. It wasn’t as warm as we expected, in fact it was downright cool when we left Tampa and pretty chilly when we returned!! It’s cold today too. Because of the huge cold front across the US, we had some pretty rough weather. Just seemed like constant movement, but nothing that made us sick or anything. Did feel a strain on my ankles when we got home though; I guess from bracing myself and leaning to meet the roll of the ship. Made for nice sleeping though; just like being in a cradle.The ship was very nice but except for a few excursions when we were in port, we didn’t do a whole lot. The balcony in the room was so nice we spent a lot of time there. Went to a few shows, dropped $35 in the casino and did a LOT of walking. It was just nice everyone being together. DJ made the most use of the ship; he talked to everyone and had a great time. Reanna used a lot of her time catching up on sleeping and reading. We got a lot of good, professional photos on the trip & DJ, Reanna & Billy took lots of photos too. Babe & Billy had planned on doing this cruise for our anniversary, and she made him promise to go through with the plans.  We really enjoyed it and appreciate his lovely gift.

Before we left, we had three anniversary dinners!!  Two of Bill’s niece’s were in town and they each took us out to dinner while they were here.  We also went out to dinner with Billy, Reanna, DJ and his girlfriend, Maka the night before the cruise.  They surprised us with an anniversary cake, balloons, gifts and cards!!   We would also like to thank all of you who sent us congratulations for our anniversary; it’s great having such terrific family and friends.  You made our celebration very special.   

We got back to Tampa on Sunday and stayed overnight so we could meet with Bill’s doctor on Monday. He’s planning on starting Bill on chemotherapy. Since the lesions are very close together (in the right lobe of the liver), he’s asked the radiologist to study the films to decide if direct radiation to the site would be possible. He said it’s not the usual treatment but since they are so close together, he feels it could be more effective to do the radiation with chemo for five days a week, for about 3 to 5 weeks before going on the regular chemotherapy. They’ll be calling us sometime next week to let us know if this will be possible. If it is, we’re going to see if we can get a place at the American Cancer Society’s “Hope Lodge” which is located about a block away from Moffitt. Hopefully, we can, because there is no charge while undergoing treatment and we could stay up there all week and even on the weekends, unless we wanted to go home for the weekend. They have communal kitchens and dining areas, so we would save on food too.

In the meantime, Bill is scheduled to go into Moffitt on the 8th and 9th to have a port installed for the chemotherapy, so they won’t have to put an intravenous into his vein each time. I imagine as soon as that is healed, we will start the other chemo, which will be once a week for three weeks with one week off before the next set of treatments. So the plan is radiation with 5-FU chemo daily for 3 to 5 weeks (if approved) followed by weekly chemo (Gezmar), in three week segments, thereafter. As I know more, I’ll let you know.

We appreciate all the emails, cards and prayers we’ve received; thank you so much.  I anticipate that we’re going to be pretty busy, but I’ll try to post a notice on Bill’s care page to update everyone as things occur.  

Hard to believe that the year is coming to a close so quickly. I had hoped that with the passing of 2008, we’d be starting over again and leaving all our troubles behind us. Guess that was wishful thinking. We’re doing all right though. Bill is determined to do whatever treatment they think might help and is feeling pretty good physically and emotionally. Whatever is ahead, I know we can handle it! Just keep us all on your prayer lists!!

Love you all and hope you have a great thanksgiving and Christmas!!

Dad Update (From Mom) – 20 April, 2008

16 April 20, 2008 at 08:45 PM EDT

Want to see if ‘editing’ will send this to TRL

Sunday, April 20, 2008

Thanks everyone for your calls, prayers and support.

Bill is feeling much better since I last posted an update. He got pretty good news when we went up to Moffitt last week. He won’t be receiving any chemotherapy or radiation treatments. The radiation isn’t an option for that area. The cancer is rather rare and there are few trial drugs or papers written on it, so there’s nothing to indicate that any chemotherapy would really be effective. It’s the closest thing to pancreatic cancer and most chemo is not good for that either. In any case, he said in his present physical condition, he wouldn’t start chemotherapy anyway but would have to wait until he gained some weight and strength. Then, if he wanted to try it anyway, he might agree, but doesn’t really recommend it.

The doctor feels that since they feel that all of the cancer has been removed, and it has not invaded the lymph nodes and there is no evidence of it having spread anywhere else and it’s only a Stage I, that he would not recommend trying chemotherapy. He thinks we need to do a CT scan every 3 months for a year or so and then have one every year. He gave Bill a great physical exam and took a very thorough and detailed medical history from him. Since we will only have to go up every three months, we’ve decided to stay with him rather than see someone locally; we feel that as thorough as he is, it’s not likely that he’ll let anything slip by.

He came home in a much more optimistic mode and has begun eating much better; says food is tasting better now. He still doesn’t have a lot of energy and sleeps a lot, but he’s really much better. We both believe that he has finally turned the corner. He will be starting physical therapy this week, so that should help him to rebuild his muscles and get more energy.

We have to go back up on May 8th to see his surgeon, because he was in surgery when we were there.

Billy was down this weekend and it did us both good to see him. He helped us out by doing a few things that I can’t handle and we had a lot of time to talk. Poor guy will have to get up around 3:00 am tomorrow morning to make the drive back up to Tampa and get his plane back to Memphis and go to work!!

Thanks again for the concern and prayers and support you all have shown us…we really appreciate it.

Dad Status – April 17, 2008

I called the house yesterday and my dad answered the phone.  He sounded great.  He told me mom was at the pharmacy picking up a perscription.  They had been up in Tampa for a couple days for tests, to see the oncologist and the surgeon.

Everyone told him it looked great and that he was doing well.  They told him that sometimes the antibiotics they give affect your taste buds, but that the taste of food should be coming back soon.

The oncologist said that he doesn’t need to get radiation or chemotherapy.  I think he said that the type of cancer he has doesn’t respond well to radiation and that it is very rare and there is not a documented path of drugs to use for chemo.

They’re going to have him come up for scans every three months and just keep an eye on the area where the cancer was and see how it is doing.

I’m headed to Tampa tonight after work.  After driving the 1.5 hours to their house from Tampa it will be pretty late by the time I get there.  But I will stay Saturday and Sunday and come home on a 6:22AM flight Monday morning.  Because of the time difference I’ll get back here by 7:30…. EARLY for work (since I work right here near the airport).

 Looking forward to seeing them.  Since I got my new ipod touch, I’m going to take my old ipod video down so he can use it.  It has all 500 of my CDs on it… so he should never ever run out of music to listen to… lol.

Dad Update (From Mom) – 14 April, 2008

15 April 14, 2008 at 12:43 PM EDT

Monday 4/14/08…..

Bill’s been having a hard time since we came home. He has lost a lot of weight and is anemic so he doesn’t have much strength or energy. He has difficulty with his eating because he says nothing tastes right. It’s just been a long haul for him and he can’t seem to push himself enough to eat more or to walk, so he doesn’t see much progress.

I’m sure that with our loss of our daughter and Bill’s brother recently, that he is experiencing a good degree of normal depression and then, going through such a tough surgical procedure with it’s inherent problems, it just makes things worse for him. We are going up to Moffitt this week though, so hopefully we’ll be getting good news that will reassure him; also, as much as these trips take out of him, I think the activity will do him some good.

Billy will be visiting this coming weekend and Bill’s brother & SIL Chas and Mary will be coming the following week with their daughter, Jeri, who will stay with us for a few days. This gives him something to look forward to and I’m sure that he will enjoy their company.

I don’t want to bring anyone down, but figured you’d wonder why you hadn’t gotten an update recently. It’s just a tough time right now, but I’m sure that things will improve. His vital signs are good and I think it will just be a matter of time.

Thanks for your continued prayers and good thoughts.

Update on Dad From Mom – April 8th, 2008

14 April 08, 2008 at 11:11 PM EDT

Tuesday, April 8, 2008, 10:59 pm

Well, I’m sure that I posted another update either just before or the day that Bill was discharged and I saw it on the site…but it’s not there now!! Now I know it is the site and not me that is crazy!! :o)

We had a nice visit with Bill’s sister and nephew on Sunday; it was so good seeing them again.

We left Moffitt yesterday around 1:30 pm and Bill felt great. It is a bit of a ride though….a little over 100 miles and it takes us about 1.5 to 2 hours, so Bill was pretty tired by the time we got home, and so was I. I unloaded the car and then we both took a nap!! It’s good to be home.

Bill ate pretty good yesterday and I had no real trouble with taking over the tube feedings and meds again but Bill woke up this morning feeling bad. He felt his distress was caused by the feedings; perhaps he is getting too much by tube right now. The visiting nurse came this morning and all Bill’s vital signs were good, so we weren’t too concerned.

He just laid around today and hardly ate or drank anything until late afternoon, when he woke up from a long nap and felt well again. I guess yesterday just took a lot out of him. He had a decent dinner and later a snack and has just settled in for the night. We’ve cut his tube feeding in half for a while, to see how he does and will increase it when he’s ready.

We return to Moffitt next Thursday to see his surgeon and have a consultation with the oncologist. He also has to have another CT scan; we’ll probably go up the day before and stay overnight, so we don’t have to do that trip twice in one day.

I finally got started on the IRS returns today. I just haven’t had time to work on it until now. I have Babe’s about ready; just have to run it up on the software. I have most of the numbers for ours; just have to review them and then finalize and print the return. I’ll be really glad when that is over with, so I can get my house cleaned. I don’t think it’s been cleaned since before Christmas, when I began staying with Babe, except for an occasional vacumning by Bill and minor tidying when I was home.

Things seem to be heading in the right direction now, and I’ll update the board periodically so you know Bill’s progress.