Well, just got home from the hospital not too long ago.  Yes, you heard that right.  I almost didn't write this blog tonight due to mental and emotional exhaustion.  But, wanted to give you all an update. This morning I was getting ready to go to work and Dan said he didn't feel quite right.  He just felt "weird" he said.  I said maybe his blood sugar is low and to sit down and drink some Gatorade.  He also didn't sleep too good last night because the nausea medicine they gave him can keep him from sleeping.  And then he said his left arm was tingling, he was having chest pain and labored breathing.  I immediately was thinking "heart".   After drinking some Gatorade, he said he felt much better.  I asked him if he was sure because I would not go into work or I would work from home.  He said, nah, he felt alright, back to normal.  I was concerned but also taking his word for it and he did look much better.  I told him to call me if he feels "weird&qu

I dropped off Dan at the Lipson Center at RGH this morning at 8:45 this morning.  He began the 1st round of chemo at 9:30.  He had several rounds that lasted 4 hours.  Then I had to leave work and go to the center to see how they hook him up to the "ball".  I don't have to do that but they wanted to show me and also make sure the lines are never pinched. The "ball" contains another type of chemo that will release medicine slowly into Dan via his port over the next 2 days.  The ball will decrease in size as it releases medicine.  Dan has to carry it around in a pouch with a strap that hangs over one shoulder or as a crossbody.  He has to sleep with it and be careful/mindful that it is there and not lay on it.  He looks good with his "man purse". 😁 They gave us a "hazmat suit", gloves and other items in case of a spill or leak as the chemo is toxic and can burn your skin and bleach your clothes.  We also received a plastic garbage can for the

We spoke to the doctor today and we are good to go for chemo tomorrow.  We thought we would be speaking with Dr. Kahn, but we actually saw Morgan who is a PA (Physician Assistant).  She was amazing, thorough, straight-up, informative and patient.  Loved her! She went over the bloodwork which was good and Dan's vitals.  All good. She also went over the treatment plan and expectations and subsequent side effects. Dan will have 3 months of two types of chemo treatments, twice per month.  One will be a 4 hour treatment at the center and then he will be hooked up to another chemo medicine which will be infused into his port continuously for 46-48 hours at home.  A nurse will come to our home and remove the tube from his port after that treatment.  A scan will be done at the end of the 3 month period to see how effective the treatment is going and decide on any modifications. If Dan is doing okay with the treatments and side effects, he will be administered chemo for the following 3 mont

Today, Dan got his port put in at Rochester General.  The place was backed up so we didn't get out of there until 4:30.  At one point I had to ask when he would be wheeled in as no one came to us for almost an hour after he was prepped.  Was insane.  Thankfully, everything went well. I had to ask my sister-in-law, Lori Isaac, to let Cody out as we didn't expect to be there soo long.  THANK YOU LORI EVEN THOUGH CODY HID ON YOU. 😁 Because everything took so long today, Dr Kahn (Dan's oncologist) was unable to get blood drawn and then to see him today so we have to go in at 8:45 tomorrow at RGH and get blood drawn from the port, see the doctor and finance people.  They are going to try and get grants to help pay for the costs of the chemo and costs are also based on household income.  I also have paperwork for them to sign as I am applying for Paid Family Leave.  I do not have any sick or vacation time left so I am not currently getting paid for the time away from work caring

Dan and I had a wonderful Christmas.  I wanted to take lots of pictures so I will always have these memories.  We don't know what the future holds. I have to call the oncologist's office on Tuesday.  They changed Dan's appointment to get his port inserted from 8am to 1pm on Tuesday, 12/27.  They called us last week.  Then we get his schedule in the mail and it says something different.  Then he gets a text yesterday and it says something different again.  Very confusing!  They need to get their crap together. 😠 Dan's stool is getting pale which is concerning and expected as his liver is full of cancer.  I will be letting them know that when I call as I want to be sure we report all symptoms. Today, we will relax and enjoy this holiday.  Later I will bake chocolate chip cookies and cook one of his favorite meals...Ham Penne Skillet .😊🎄🎅🤶

For the past two days, Dan has been feeling pretty good!  He even felt well enough to venture out and run some errands.  He said it felt good to get some air and to do something other than laying around and napping, watching TV. He wants to thank those of you who have called, texted, sent cards and dropped off goodies.  He feels so blessed and thankful.  I want to thank you all as well! He has eaten a lot these past couple of days.  My goal is to fatten him up a bit before he begins chemo next Thursday. 😊 We are gonna try and enjoy Christmas.  Will just be the two of us for safety reasons.   That's all I have for now.  💞

Dr. Kahn called Dan today.  They talked about a few things.  One of which that Dan's liver is full of cancer.  We didn't realize that all of it was.  The spots on Dan's lung are small so the chemo should shrink those and hopefully shrink what is on the liver.  Dan had to ask the doctor if it was even worth doing the chemo.  The doctor said the liver can heal to a degree where Dan could live a couple more years, that is the best we can hope for.  We already knew, however, that he will never be cured.  He will never be in remission. Dan continues to rest at home.  I really don't have any other updates at this time. It continues to be an emotional rollercoaster ride. 😔

Hello everyone, Dan came home from the hospital yesterday and had a very good night's sleep last night. He will no longer be working....for now.  He has enough sick days and sick bay time that he is all set for the rest of the school year as well as into the next, thank God!  This means he will continue to get paid and we still have his health insurance coverage. Next Tuesday, 12/27, Dan goes in to get his port placed into his upper chest at Rochester General.  I need to drop him off at 8am.  We will be there a few hours. Then on Thursday, 12/29, Dan will have his first chemo treatment and this will also be at RGH and after that, the Lipson cancer center in Penfield for future appointments. On Friday, 12/30, we have an appointment with Dr. Kahn (his oncologist). Life is getting pretty busy for us now.  We are trying to get some things in order and other things set in motion.  Looking ahead as to what to expect and what can be done now to prepare for whatever comes our way. We again

Well just got off the phone with Dan's doctor at the hospital and unfortunately, Dan is not going to be home today. Apparently Dan had a low grade fever of 100.4 last night around 7pm and although he doesn't have one now, the doctor wants to observe him overnight as a precaution.  He feels the fever is from the cancer.  All his other bloodwork does not show any type of infection which is why he feels it's just complications from the malignant cancer. Dan's kidneys are at 100% again so that is good.  He had scans done on his liver and lungs.  They found new spots on his lungs and they are still reviewing the results, but one of them is 1.2cm, which is big.  This is an aggressive cancer. Dan is not going to like the fact that he has to stay another night....especially in a recliner!  I'm writing this as the doctor speaks to Dan.  I'm sure Dan will call me shortly. We will be having a follow up appointment with Dan's oncologist, Dr. Khan, sometime this next wee

Just got off the phone with Dan.  Still in hospital receiving fluids.  They did a scan on his kidneys and thankfully they are fine and no damage or cancer detected there.  His numbers keep going up with the fluids which is a good thing.  He is eating too...as long as they remember to give him the damn food!  They asked him yesterday what he wanted for dinner and instead of the sandwich, chips and milk he requested, he instead received packages of crackers. 😠 That is ALL he had yesterday to eat. Then this morning he was supposed to get breakfast.  And when he kept asking where it was, they found it in the hall where it was for TWO hours.  He ate it cold as he was so hungry. He obviously cannot wait to get home because as you may know, it's almost impossible trying to sleep in hospitals.  He is in an Atrium type room with 40 recliners and that is where he will be staying until most likely, tomorrow.  I had also spoken to his doctor and he reiterated what Dan had told me about his pr

We finally saw an oncologist today, Dr. Khan.  Received a lot of information and we are feeling a bit overwhelmed and still trying to process everything. In a nutshell, Dan has inoperable stage 4 cancer which spread to his liver.   It's aggressive.  When he had cancer two years ago on his appendix, they took that out and 6-8 inches of his colon and some of the lymph nodes.  Only the cancer was on his appendix but they took out part of his colon at that time and the lymph nodes.  They also tested them and it was negative for cancer.  So they sent Dan on his merry way saying to go and enjoy life. The cancer he has now is from that cancer from two years ago.  Unfortunately, there can be such small microscopic cancer cells that can go undetected and Dr. Khan believes that is what happened to Dan and it spread to his liver.   He will now need Chemo once every 2 weeks.  Each of those treatments are 3 hours long and will be at the cancer center.  After that, they send him home with intrav

Dan and I are still getting over having the stomach flu these past few days.  Dan had called the cancer center on Tuesday and they were "still reviewing his records".  It's been over a week.  How long does this take for heaven's sake?! Today I called them myself.  I was mad, upset, on the verge of tears telling them that my husband is in pain every day, we are just getting over the stomach flu and he is losing more weight and I am concerned about his physical and mental well-being.  He needs to see someone NOW.  He probably has advanced cancer and his cancer has come back and THIS CAN'T WAIT ANY LONGER.  The guy on the phone was patient with me and said to hang on so he can see what is going on.  I was on hold almost 10 minutes.  He came back on the line and said that Dan never called.  They were waiting for him to call.  I said, "We did everything we were asked to do and that we called and were told someone would call us and that every time we called someone

Today is Sunday, December 11th, 2022, the day after Dan's 59th birthday.  Yesterday we celebrated with his sister, children and grandchildren.  It was a great day.  I wanted to be able to get everyone together.  We do not know what the future holds for Dan who was recently diagnosed with colon cancer which spread to his liver (Metastatic Adenocarcinoma). Dan has lost 35 pounds in the last two months.  Has periodic pain which takes away his appetite.  At this time, we are waiting for the Lipson Cancer Institute in Penfield, NY to contact us for the next steps.  I imagine more tests will need to be done to figure out exactly what stage this is and if the cancer spread to other areas of Dan's body.  We have already waited a week for a call!  Ridiculous.  If Dan doesn't hear from them tomorrow (Monday), then he is going to walk in there and demand to speak to someone.   For now, Dan is mentally doing good and physically not bad at all.  All I know is they better get this starte