He's Home!

Well, Fred came home today. He is on his portable pumping thing. It seems to be working just fine. All of the apprehension he had about coming home is gone. We had the Home Healthcare nurse come to do an intake. I feel confident that he is in good hands. Okay, a couple of those hands belong to Lois and that might give reason for concern--but there you have it!

We just need to figure some things out but is that not life?

Latest

Fred will come home tomorrow, Thursday. His equipment wasn't ready and so everything should be in place by tomorrow afternoon.

Not much else to report.

Latest news

Well, we have a plan! Fred should come home tomorrow afternoon after his radiation treatment. The decision is up to him. If at any time he feels uncomfortable about taking that step he can stay where he is until he is comfortable.

We will have home health care in place. He will be on a machine that releases extra pain meds as he needs them. There will be nurses to help out.

The pain hopefully will lessen as the radiation continues and then he can get off the pump.

Will keep you all up to date!

Christmas, kids and hospitals

Christmas morning dawned with about 4 inches if water in our basement. Todd and Lois went to work with our high boots, pump and hose. Todd took charge and Lois took off.

Fred seemed a little bit better. Over the day he was visited by all of our kids and grandkids. The kids have met both doctors and are very pleased and comfortable with them.

This morning all of the Cambio grandkids showed up at Penney's to have their picture taken. They were very cooperative and we have some lovely pictures.

Then we went to the hospital. Fred was in good spirits and moving more. That is one of the keys to him successfully coming home.

No real updates on his condition other than the above. I will keep you all posted.

Christmas Eve

Well, this Christmas Eve has not been like any other in our family history. Fred is still in hospital and still in a goodly amount of pain. If he doesn't move his body he is at a level 3 but if he moves at all he shoots up to level 8. This is getting really old.

We have devised a plan. We are shooting to spring him on Monday or Tuesday. If we coordinate everything he can have his radiation and then go home. Hospice will give us a machine that will dispense one of the pain meds through his port--and it is portable. We will try to have him do some walking around the hospital so that he can build up some sort of endurance.

I have talked to my dear friend and former boss. He is a case manager for Hospice. Dean will be Fred's case manager through the rough times. We could not ask for better.

I am thankful that we have been surrounded by such a wonderful bunch of friends and family. The friends are so dear that they have moved into the "family" category.

Fred is a very proud Father of four very special children. They have been super. The wives of the boys are just as great! Everyone is taking care of all of the "stuff" and Lois is able to concentrate on her sweetheart!

Merry Christmas to you and to all a good night!

Wednesday's news

Fred is still in hospital. He had his second radiation treatment today. His oncologist told him that his cancer was spreading and that chemo will be stopped. He will now just be treated for pain.

At this point he would be content just getting rid of the pain.

He probably won't be home for Christmas Day. For Fred and his family--just get rid of the pain!

When Nathan and I left him this evening his pain level was at about a 3 (10 being the worst). Hopefully he will be at that level for a while.

A pain management doc has been called in for a consult. Let's hope he has some great insight!

Tuesday's news

Fred had his first radiation treatment today. It was hard on him. He had to lay flat on the table and he had to cough and relieve himself at the same time. All of that was really a drain. Also, it left him in pain.

No date for release as of yet. When the pain is under control he will be home. He says nothing about wanting to be home so I believe he is hurting enough. When he mentions going home I know he will be feeling better.

Nathan is at home and helping Lois in all sorts of ways.

Monday

Fred went to be fitted in the morning for a mold of his body for the radiation. That turned out to be quite a painful ordeal for him. However, back in his room the pain med took effect and he was better.

He gets his first radiation treatment Tuesday. Going home is not certain. The doctor wants his pain level to be around a 1-3. He only gets that low if he stays still. Moving starts everything going again.

Nathan and Tina arrived and stopped in to see Opa. Nathan is staying at Casa de Cambio and Tina and the kids at the Troha's.

Todd and family arrive Christmas Eve--Matthew and his family Christmas Day. There will be bodies all over the place Christmas night. Very crowded but an absolute delight!

Sunday's News

Today was a good day!

The drugs have taken effect and Fred looks so much better. Todd brought Oscar to visit his Opa. Nothing like a cute 1 1/2 year old to brighten ones day. However, good drugs help much more.

Tomorrow morning he should be having his first radiation treatment. Hopefully/prayerfully it will relieve him of pain. The doctor is also going to transition him to an outpatient drug.

The Latest

Yesterday Fred went to St. Catherine's hospital. His pain was severe and his doctor wanted him admitted so that something could be done to relieve him.

He had a CAT scan last night. Most probably will start some radiation on Monday to try to shrink the tumor causing him so much discomfort.

Actually, he was relieved to go to hospital because they have "better" drugs.

Okay for now; Todd is coming with his family today. He will put the oven in order (Please God) and visit his dad.

I will try to keep this up to date but without Fred to instruct--its a crap shoot

This morning was lovely with snow falling--if you don't have to get out of the driveway. However, the snow was cleared , we got out just fine.

Fred had an appointment with his doc and treatment to follow. His pain meds were increased and he will have a transfusion tomorrow morning. Hopefully this will make him more comfortable.

Our weekend was spent in Madison at the Von Huene's. They are such good friends. Not only do we have "our own room" but now we have a new bed!

At any rate, Fred enjoyed a very relaxed and comfortable weekend. Todd came for dinner on Friday and Mary Jennifer and her dogs spent Sat. and Sun. with us.

Georgette and Lee Gardella have given Fred some info on some "cutting edge" treatment for lung cancer patients. Dr. Hadar is aware of that type of treatment and is looking into Fred's prospects. He plans to talk to the docs at Mass General.

Okay, this is not as technical a report as one Fred would do--but it is more current than Fred would do-----------that's why we love him!

Fred has officially turned over updates to Lois. She has nagged him for too long!

The fourth treatment of his second round of chemo was week before last. This has left him tired, weak and in a good deal of pain. Hopefully, he will start to pick up this week.

The bright spot in his life has been a visit from all four kids, daughter-in-laws and all eight grandkids (Halloween weekend). Things were hectic around Casa de Cambio but very happy. There was a pumpkin carving contest, popcorn ball making and------the Cambios of N.C. introduced the kids to Halloween "Troha style". Couldn't have been more fun!

Fred is also happy because Oscar can finally say "Opa." Okay, that might not sound too great but it brought satisfaction to all involved.

You will be informed on a more regular basis now that the good wife that I am is in charge.

No Tuscany

We've decided to cancel our trip to Europe. The new chemo treatments, along with the increase in pain killers, are having more of an effect on me than we expected. I am always tired and unable to think straight which wouldn't make our trip very pleasant. Lois would have to do all of the driving and if things got worse we'd be stuck in a country where we couldn't speak the language.

We were also planning on spending some time with Lois's cousin Peter in Stuttgart, Germany. He just learned that he has prostate cancer and is having surgery to remove his prostate this week.

To top it off, the cost of my most recent prescriptions put me beyond the coverage limit and into the coverage gap (the donut hole). We will have to pay for prescriptions until our out-of-pocket costs reach $4,350. We should be able to get some help from the state. Wisconsin has a program, Senior Care, that should cover some of the costs.

Not Good News

Had a PET scan yesterday and met with Dr. Haider today. That light spot on my lung turned out to be a tumor about the size of a nickel. My choices were to do another round of chemo or do nothing. I chose the chemo. It will be slightly different from the first round and will start on Friday (9/11). The pain is back under control with an increase in pain killers.

We're still planning our trip to Europe from Sunday 10/4 thru Tuesday 10/27. My chemo treatments will be scheduled around the trip. I'm hoping I won't lose my appetite.

Confusing

At the beginning of the month the whole family got together at Todd's house. Its not too often that we can get the 8 grandchildren together. They all seemed to have a good time except, maybe, for Will.

I had a CT scan on 8/17 and saw Dr. Haider on Wednesday 8/26. He said the amount of pleural liquid was about the same with maybe a slight increase. He also said that there was a light colored area where a tumor used to be. It could be a return or just some swelling. There was nothing in the area that could be biopsied so they have to assume the worst case. I've also have a pain on the right side of my back. Its been there since radiation but now I need to take pain killers to keep it under control. I'm scheduled for another CT scan in a few weeks. Depending on the outcome I might have to go through another round of chemotherapy.

Thing is: we're well into planning our trip to Europe for most of the month of October. We've already purchased plane tickets.

Good News

Dr. Haider reviewed the scans, with us, today and except for a "very small" amount of pleural fluid my lungs look clear. We're going to keep an eye on the amount of fluid because it might contain some cells and start to increase. The cancer cells were first found in the fluid. Because my cancer is incurable this is the best outcome I can expect.

Lois and I are being optimistic and starting to plan a trip to Italy this fall.

Waiting

Had my last radiation treatment on June 4. We've giving the buggers 5 weeks to reappear after being zapped 33 times. I'm having a PET scan tomorrow and a CT scan on Friday (7/10). We won't get the results until Wednesday (7/15). Still feeling good.

25 Down

I've been getting a lot of flack for not posting to my blog recently. I guess people assume I'm in bad shape or dead. I'm not.

Today is my 69th birthday. On Friday I received my 25th radiation treatment and have only 8 more to go (ending 6/4 because of the holiday). My side effects have been limited to difficulty swallowing, indigestion and tiredness. If that's it I'll consider myself lucky.

Our kids have been great. They've been eliminating a lot of items from our To-Do list involving replacing, repairing, painting and gardening. Todd was her on Saturday (5/7) and rebuilt our outhouse (yep we decided to keep it). Nathan came in from N.C. on Saturday (5/16) and stayed the week to repair our bathroom floor and help out. Mary, Matt, and Todd also came while he was here (that's Will in the picture). Thanks guys.

If you look closely you can see some hair starting to emerge.

10 Down

Yesterday I got my 10th radiation treatment. Only 23 more to go. I haven't noticed any side-effect yet and I'm hoping it will stay that way.

The week started with a flooded basement. The floor drains weren't swallowing so I decided to rent the rodding equipment and clear it myself. I under-estimated the work and over-estimated my abilities. Luckily, my brother-in-law, John, stopped by and ended up doing most of the work. The blockage was 146' from the clean-out (in the barn). Thank you John.

We're almost back to normal now with just a little more cleanup to do.

1st Zap

Had a brain MRI on Monday (4/13) and it showed that my brain was still clear. The results from the lung function test on Tuesday (4/14) were "great". So plan 2 (irradiate both the former and current areas of cancer) is in effect.

On Friday, using the radiation equipment, they took "pictures" of my right lung at may different angles. A program was then written to cover the areas in question with the required radiation dose.

This morning I went for my first treatment as I will be doing for 15 minutes every weekday for the next 6 1/2 weeks (until 6/3). It took longer to get me lined up on the table in the right location than it did to zap me.

Pneumonia

Had a fever of 103F on Saturday and went to the ER as suggested by the Oncologist on call. I was diagnosed with "pockets of pneumonia" and was admitted. They gave me an IV antibiotic (Levaquin again) on both Saturday and Sunday then released me with tablets to finish the dose.

Dr. Hwang called me on Tuesday and said that, because my case was unconventional, she discussed it with colleagues at the medical college. They covered 3 possible paths: 1 - Proceed as planned and irradiate the small area of activity at the bottom of the pleural cavity; 2 - In addition to the active area irradiate the areas where the cancer used to be; 3 - Do nothing for several weeks and watch the cancer to see if it grows. She said they would do 1 or 2 depending on the results of my lung function test. Because I'm an ex-smoker my lung capacity has probably been diminished. The radiation will reduce it further and she does not want to treat a larger area if my capacity is already low.

I told her about the pneumonia and that the test, scheduled for Thursday (4/9), would probably not be accurate because I was still congested and short of breath. We rescheduled the test to Tuesday (4/14). This will also delay the start of radiation by a week.

She also wanted me to have another brain scan (MRI, which I don't enjoy). The radiation treatment would be a wasted effort if the cancer has already spread to the brain. My last MRI, in January, was clear and it should still be. My next MRI is scheduled for Tuesday (4/13).

Radiation

Dr. Akgulian canceled our appointments for Monday because he thought he might be getting a cold and that I should avoid him. I ended up getting a cold anyhow.

Dr. Haider said that the scans looked good and the tumor has not grown and my blood tests look good. He thought that I might be a candidate for radiation therapy even though its not used for my type of cancer (cells in the pleural fluid). He said he would consult with a radiologist.

Today I met with Dr. Hwang who is a Radiation Oncologist. She said that even though she could find no information regarding the use of radiation for my type of cancer she agreed with Dr. Haider. Its primarily because my response to chemo was "excellent" and the cancer "nodules" are bunched together in a small area on the bottom, of my right pleural cavity near the chest wall.

I agreed to the procedure. I was then given another CT scan so they could tattoo reference marks for aiming the radiation. On Thursday I'm going for a lung function test and on Friday for a test run of the radiation treatment. They will start on the following Monday (4/13). I'll have to go for 15 minutes every weekday morning for either 3 or 6 weeks depending on the dose.

It looks like a Florida trip isn't going to happen this year.

Busy

We went to Madison last weekend and once again Matt and his family were in town for a basketball game. We were all together at Todd's on both Saturday and Sunday. It was fun.

I had my blood tested on Tuesday and the results still look good.

Yesterday we went to the monthly lunch with my siblings and cousins. Today I went for a PET scan and tomorrow I'll be getting a CT scan.

Saturday we're going to the Opera (last one) and on Sunday we're going to Madison for Oscar's 1st birthday.

Lois and I both have appointments with our family doctor (Dr. Akgulian) on Monday and on Tuesday I get an Avastin treatment and find out what further treatments are planned.

Stable

Had my weekly blood test on Wednesday instead of Tuesday (I screwed up). The test results were good and I'm feeling fine.

We're going up to Madison for the weekend again and that should be fun.

Finally

On Tuesday I received the final chemo treatment of the high powered stuff. I'll still be getting the Avastin every three weeks but I don't know what else is in-store. It will depend on the results of a CT and PT scan which haven't been scheduled yet. I guess we'll have to hold off on our Florida trip plans until we know more.

Delayed

Went for my chemo treatment yesterday and because I had a slight fever (100.3) the treatment was postponed until next Tuesday. I was given an antibiotic (Levaquin again) to take for the next 10 days and I got a chest x-ray.

Thanks to the transfusion my blood tests looked much better than the last time.

Last weekend was something special. Nathan, Tina and the kids came here from NC on Friday and stayed until Sunday afternoon. It was Tina's idea that they come and see me while I was still in good shape and before my last treatment. Nathan invited his siblings to join him for the weekend. Mary, who is in Florida, couldn't come. Matthew had to bow out at the last minute because Joe came down with a rotavirus. The Dr. advised that I not be in contact with anybody from that household.

Nathan and Todd prepared the Saturday meal that consisted of homemade ravioli, homemade sausage and homemade sauce. Tina's mom, Natalie, also sent over 2 cakes, a pie and 2 trays of lasagna. When I was weighed in yesterday I had gained 2 lbs from the previous week. I consider myself a lucky guy.

Blood Work

I've been feeling great for the last week. We went to Watertown WI for our nephew Ron's wedding on Saturday. Even though it was during a snow storm they had a great turnout and we all had a good time.

We had lunch with my siblings and cousins on Tuesday and went for my weekly blood test immediately afterward. According to the test results I shouldn't have been feeling so good. My red blood cells, hemoglobin, hematocrit and platelets were below normal. I should have been feeling tired and short of breath. Hematocrit is the amount of space within a blood sample occupied by red blood cells. The normal range is 42 to 52%. Mine was 25.6% and as a result I needed a transfusion.

Yesterday I received 2 units of blood and today I don't feel any different.

Weak Week

Last week was a rough one. I was tired and depressed and always cold. It seems like each treatment knocks me down a little further and it takes longer to bounce back. Today I feel fine. Its as though the symptoms were just switched off last night.

Yesterdays blood tests showed some of the results, including red blood cell count and platelet count, to be at the lowest point since this started. I guess I'll have to be careful shaving again.

Drain Gone

Had my drain tube removed last Thursday. On Tuesday (2/3) Dr. Haider suggested that it should be removed since the fluid had stopped and to avoid infection. On Wednesday the hospital called and we set up an appointment for Thursday. It only took a few minutes to pull it out.

Went to Madison again last weekend. Sunday was our 45th anniversary and we celebrated with dinner at Todd's.

I had my 5th chemo treatment on Tuesday and met with Dr. Haider beforehand. I asked what I should expect after my 6th and last treatment. He said it would be based on conditions after that treatment. It could be radiation, or a maintenance treatment. The cancer cannot be completely removed and if nothing was done after the last treatment I would have about 2 months. I guess we won't be able to make vacation plans until we know more.

Results

Met with Dr. Haider yesterday and we went over the results of the latest test. Good news. The CT scan showed that the tumors are still shrinking. The bone scan and brain MRI were still clear. The doctor said that the 1st four chemo cycles account for 90% of the results. The last 2 cycles will only produce another 10%. He pointed that out as something to consider with regard to joining the clinical trial.

We also met with the Clinical Trial Coordinator who went over all of the items in the 19 page "Informed Consent Authorization" form. I've decided to stick with the current plan and not join the study.

My blood tests results showed my platelet count (137) to be back in the normal range.

Latest

Had a CT scan and brain MRI today. The MRI was 40 minutes of having my head clamped in a box listening to very loud machine generated sound frequencies. It seemed like it lasted forever. These tests along with the bone scan from last Friday should indicate the cancer's progress or lack (hopefully) thereof . I won't find out until next Tuesday (2/3)

Lois planned on treating me to lunch at the local diner after my tests and we ran into our former neighbors ("exdoor neighbors"), Wayne and Carole, who happen to be in town visiting their kids. Wayne treated so Lois still owes me one.

That's 2 days in a row of eating out. We had lunch with my cousins and siblings yesterday - the weather finally allowed it . It was a small group (9) and we had a good time together.

Tuesday's blood test results showed that my blood platelet count (94) has dropped out of the normal range (130 to 400). It was 177 on the previous Tuesday. They told me to be careful shaving. I guess if it gets too low (don't know what level yet) I get a transfusion.

Decision Time

We did make it to Madison last weekend and it was good to get away and go someplace other than the doctor's or a hospital. We spent 2 nights at Karen and Karl's and 1 at Todd's. Turns out that Matt and his family were also spending the weekend in Madison with Jenny's folks so we were able to see them too.

I had my 4th chemo treatment on Tuesday and it went well without much in the way of side effects. My blood tests also were good. Dr Haider asked if I might be interested in another clinical trial. Its for a drug, Sutent (Sunitinib), that has had pretty good success treating kidney cancer. I qualify for it now because I have completed 4 chemo treatments. It is an oral drug and if I joined the trial it would mean stopping the chemo now. Its a double blind study and half of the participants would receive a placebo. The doctor said that he would remove me from the trial if there was any sign of tumor growth. The idea of just taking a pill is appealing. I have a few weeks to decide and during that time I'll be getting a bone scan, CT scan and MRI. They should indicate my current progress, if any.

This morning we did pleural drainage thing and got less than 20ml. Its been 2 weeks since the last one (1/8, 80ml/10days) so we're down to about 1 ml/day. I guess its time to quit.

Brrr.

Our monthly lunch with the cousins was called off today because of the weather. The wind chill right now is -9F and its snowing. I thought it wasn't supposed to snow when the temperature is this low. The snow should be ending within the hour leaving us an accumulation of about 3". Lois is planning on blowing it wearing my Carhart coveralls and a ski mask. She says she enjoys it. (?).

We never made it to Madison last weekend because of the snow - total over 12". We might try again this coming weekend. We were invited to an inauguration party up there but its the same day as my chemo treatment. ( I'd rather party in Madison).

Yesterday's blood test had good results. I feel good but not quite good enough to blow snow.

Yesterday we also had breakfast with the Sharps, our neighbors, who are leaving for Florida as soon as the weather clears. They along with other friends have invited us to Florida for a visit.
If I'm still in good shape when my chemo ends (in March) we might just try it.

Latest

Spent New Year's Eve and day with Karen & Karl and their dog Hank. It was a very low key affair and I think Karen was the only one that last until midnight. I faded at about 9:30. Even though I was still feeling the side effects of the chemo I enjoyed the food and the company.

I had my weekly blood test yesterday (1/6) and everything still looks good.

Tomorrow I will take the last of the antibiotic tablets. I'm not sure if they've done any good. I still have cold like symptoms. My voice is almost down to a whisper. I sound like a gangster from a 1940's film.

We're planning a trip to Madison this weekend. The last time we were there (11/9) I ended up in the emergency room because I couldn't breathe. Hope this weekend works out a little better.