Unexpected!

Dr. Weinstein came in this morning, we told him how much better Tom was feeling. Tom's blood oxygen levels have greatly improved, (you didn't even know they were down), shortness of breath gone, pain way down. Dr. W. explained to us that even with pneumonia you wouldn't expect his lungs to sound better yet, it takes a while for the junk to clear out. I was watching his expression when he was listening, I'd call it puzzled. He said "that's unexpected, his lungs definitely sound better, not all better but better". We don't know if it's the antibiotics or the chemo, but whatever it is it seems to be working on his lungs and probably whatever was pressing on his nerves, causing all that pain. Dr. W says it doesn't matter which, it is it only matters that he's improving.

Now the chemo, luckily he had that good day yesterday, we got quite a bit of nutrition into him, because now the nausea has set in. He is getting good medicine that is reducing it from, "I'm going to throw up", to "not hungry and a bit queasy".

We're on schedule to go home tomorrow.

Thanks again to every one that has jumped in to help, driving kids, doing deliveries, taking care of critters and house. Also, thanks to everyone supporting us with prayers, good vibes, energy, incense, positive thoughts, emails, texts and comments. It's all a huge help and today it seems to be working.

Jan

A new day

Tom is a different man today. Nobody knows why and we don't expect it to last, but he has zero pain and hasn't had any pain med since 8:20 this morning. He has had the first infusion of chemo and the rest will continue to drip in until Thursday night. He has also had two doses of antibiotics and we can only hope, think, pray that something they've given him has caused the inflammation to go down and the pain will stay away. Still in the hospital, should be going home Friday.

Not the way we planned it

After all this withdrawal, nausea, pain, suffering, Tom is back on the Percocet and then some. He has been having terrible pain that we thought was part of the withdrawal. Last night was so bad, that we ended up in the ER this morning. A CAT scan showed that the cancer that remained after the surgery had grown and the pain was likely due to the enlarged lymph nodes pushing on a nerve. Tom has also been coughing a lot, so they did an x-ray of his chest and found some stuff in there as well. The Doc said that it's not a typical cancer pattern and hopefully it is just some sort of infection, so he'll be on antibiotics for a while. As long as Tom was here they decided to check him in, pump him full of pain meds and do the first chemo in the hospital. Often the fast growing cancer will respond fast to the chemo too, hopefully this stuff will shrink up quickly. The new Oncology wing at St. Vincent's is really nice, the rooms are huge and the nurses are great so far. They have a guy that makes milkshakes on request and it's way closer to home.

A happier ending to a pretty scary day.

A bit of relief

Tom went to acupuncture today. It made him feel much less crappy. Zoe was relieved and was finally able to get some sleep too.

Let's see, what's been going on? Tom went in for his port last Monday and that part went very well, no significant pain involved with the surgery or recovery. However, he was having severe upper back pain, so on Tuesday he went in for an MRI of his back. The MRI took 5 hours and laying on the hard table did not help his back. Having the results of yet another scan was comforting, nothing going on with his back, must just be muscular. The worst, on going part has been trying to get off the Percocet, I'm telling you that stuff is nothing to mess around with. Even though Tom has been taking a relatively low dosage for a relatively short time, his body is having an unbelievably difficult time withdrawing from it. He stopped taking it on Easter and found that he was having some horrible withdrawal effects. We did some research and talked to doctors and decided to taper off slowly, but every time he reduced his dosage at all, he was back into the withdrawal symptoms. At that pace he could feel like crap for a month or more, well into the chemo. After talking to the doctor some more, Tom decided to go cold turkey on Friday. The doctor prescribed some sedatives and nausea medicine and Tom has been trying his best to just sleep through it. After this, the chemo may seem not so bad.



Chemo starts Tuesday and yes, the beginning of the chemo side effects should overlap with the end of the withdrawal effects. I'm looking for Tom to be less than miserable around Cinco de Mayo.

Jan

Here's the deal. We've just kind of been floating in limbo, waiting for Tom to heal from the surgery and get ready to start chemo. His PET scan showed some involved lymph nodes in his chest. That information was very scary to us. Dr Weinstein, the oncologist, thought it would be difficult to get a needle biopsy of one of the lymph nodes because of their location in his chest, but worth consulting a radiologist, who said maybe.

Monday, Tom went in for an ultrasound needle biopsy and the Dr felt it was just too risky of a location. Wednesday we saw Dr. W again, he explained in more detail what the lymph nodes might be and felt it would be nice to have a biopsy, but not critical at this point. Since Tom needs to have a portocath inserted into his chest for his chemo, we all thought we should talk to the surgeon about getting a biopsy at the same time. So we did, today. Same reply, if necessary he would go in surgically, but at this point surgical risks outweigh the advantage of knowing what's in the nodes right away. Because of the lymph nodes in the chest, the progress of the chemo will be monitored sooner and more frequently, the assumption (hope) is that it is colon cancer in the nodes and not something else. If it is colon cancer the chest nodes will respond the same way to the chemo as the nodes in his abdomen. That would be shrink up and go away! We sure hope.

So, Monday morning, Tom goes in to get his portocath. A portocath as we understand it is a little box thing under the skin in the chest with a tube that goes into a blood vessel. That way they can draw blood and administer medicine without having to find a new vein each time. Common in chemo, it is just day surgery. Tuesday, we meet with a Naturopath that works with a clinic that does acupuncture and other supportive medicine to help mitigate the side effects from chemo. We went to the clinic last week and thought they were great as does DR. W and others we know that have used them. Wednesday, back to Dr. W to discuss chemo more and and schedule the start of chemo for the following week.

Many of you have been emailing us with support, questions and your own news. We love hearing from you and haven't been very good about replying, we feel like we're just starting to crawl out from under a big rock. Also, some of you keep putting food in our refrigerator, some store bought, much homemade and all truly appreciated. Some of you are transporting boys, cleaning the barn and house. Sister-in-law Susan sent some books that are really helping us find a way to find a positive attitude in this situation. The whole family even received a blessing from Tom's parent's Priest on Easter. Thank you all so much for every bit of support, positive thought and prayers.

Jan

Hey all, Tom had his PET scan this week and basically it was what we expected, a little remaining cancer from the surgery and happily no other organs involved. There were however some unexpected nodes showing up that the Dr. wants checked out, so there will be more tests soon. Over all Tom is healing quite well, and he's started trying to wean himself from the pain meds. He's begun walking up and down the road (the dogs are thrilled) and he spends more hours awake than asleep. His appetite his returning although Bourbon tastes like turpentine, wine like vinegar and beer like..... More news when we have some.

Jan