Chemo to start...

This Monday was Ron's outpatient surgery to get his PORT for chemo. It turned out to be more involved than that. The "cyst" on his behind turned out to be a "fistula in ano", which is a little more serious than a cyst. I am not going to go into great detail, if you want to know more you can look it up. I don't want this to get too graphic. The surgeon opened and drained the area, so he came home with more wounds than we thought he would. The poor guy just can't seem to catch a break. It should resolve itself without too much more intervention. The only worry is that once Ron starts chemo, he will me immuno-compromised, and open to any infections, so that could play a part.
Tuesday was supposed to be his PET scan at Burlington but the machine was not working, so they made us an appointment bright and early Thursday morning at a different hospital. After his PET scan, we came home so he could "eat", and then went to our chemo training appointment. It turned out that he will not be wearing a pack at home at all. He will be starting Erbitux next Thursday, the 23rd. It will then be a weekly process, just until...
It depends on his reaction (or lack of) to the chemo. The MO may also add Cisplatin to the Erbitux. That will depend on the reading of the PET scan from today. The MO is gone for this week, so I'm sure we won't hear anything about the PET results until next week.
On another note, I was surprised this week to find out that our sweet little niece is planning a fundraiser for Ron over Memorial Day weekend at Piggly Wiggly in Lake Geneva. There will be a brat wagon set up for three days, so if you live close by, come out and eat a brat for Ron!
There is not much more to report on his health. He is just very worn out, but he can't sleep for very long at a time, so he is up and down all day and night. I still don't think he takes enough of his pain medication, but he is stubborn! Even though I have had both Doctors and Nurses explain the pain cycle, and how much easier it is to control if you stay on top of the pain, and don't wait until you're in agony to take something, he will not listen. He may need a swift kick in the sore butt :)!

Mid-treatment

Monday, October 3, 2005: Saw the Radiation Oncologist before his IMRT. Ron's mouth is full of small ulcers (called muscositis) from the radiation. Between the nausea and the mouth sores, he is finding it much harder to eat anything. Even drinking liquid hurts. The RO told us that now is the time to depend on the PEG tube to get most of his nutrition. The RO also started Ron on Triple Elixir to swish in his mouth before drinking or taking pills, etc. It consists of xylocaine to numb the area, Zovirax to heal the sores, and Maalox to coat the mouth and throat. Ron said it tastes horrible, so sometimes he just swishes and spits instead of swallowing it, but it does help numb the pain for a little while. He is feeling much more tired and spent these days. Because of his pain though, he does not sleep much. He is still only taking Vicodin or Tylenol 3 and then only when I make him. He is a stubborn one. He continues to do some chores, but by the time we get home from radiation, he is just worn out so he isn't doing the evening milking anymore. Thank goodness he farms with his brother, nephew, and our son.
Wednesday, October 5: Second Chemo. He is getting 20% less Cisplatin this time because his blood work is showing low WBC's and RBC's. This is not at all unusual--just another side effect of chemotherapy. If his numbers get too low, there are medications he can get to help.
Sunday the 9th, Ron is halfway through treatment! He is now down about 30 pounds. His bloodwork on October 12 showed an even lower WBC count, so he was given a shot of Aranesp. On the 14th I called and asked for a prescription for Ambien so he could get some sleep. He had a fairly good weekend. The following week passed fairly normally with IMRT every day, but his mouth was getting worse. He was getting more sores and now white patches also.
Monday, October 24: We saw a different doctor before radiation. He diagnosed Ron with thrush in his mouth, so he was given Diflucan for that. He also prescribed Fentanyl patches for the pain. This worried me a little because I know how powerful Fentanyl is, but it was a godsend. For the first time, I think Ron actually got some pain relief. He was also given Gelclair for his mucositis. These were little miracle packets! The Gelclair actually formed a kind of barrier in his mouth, which allowed him to drink and eat some things much easier. I was kind of glad we had to see a different doctor. I'm not sure his original doctor would have given him so much relief with that one appointment!
Wednesday, October 26, 2005: Last Chemo!! He is given 20% less Cisplatin this time, also. The following morning his blood work showed low WBC's again, so he was given another Aranesp shot. He also got his IV fluids. Friday the 28th was his last IMRT! He got a certificate for completing treatment, and got to ring the bell to celebrate the end! My sister actually came from a different state to be here for the occasion. She has been such a source of strength for me throughout this whole ordeal. She is an RN, and has been there to give sound advice when needed, or just to listen to me cry when I needed to. I could never thank her enough for the support and love she has given to all of us.
Now treatment is over...it's time to start healing!

Chemotherapy and Radiation...

I made an error in my previous post. The oral cancer staging was T1N2M0. The T1 actually means that his primary tumor was 2 cm. or less. The rest of the explanations were correct.

One thing to remember before treatment begins is that it is very important to have prescriptions filled and ready at home for side effects from treatment. We already had pain medication available, and the doctor also prescribed Compazine and Ativan for nausea and anxiety. Also, as Ron's caregiver, I am not ashamed to say that at the start of this nightmare, I went to my own doctor and asked for Xanax to help me cope with the really bad days. I knew I would need some help in holding myself together for Ron and for our kids, and it really did help. I am not in any way comparing my problems to the ones Ron faced, but sometimes I think that caregivers don't look after their own well-being. Do not be ashamed or afraid to ask for help if you need it!

Wednesday, September 14, 2005 was Ron's first day of treatment. The day started at 8 a.m. for his first Chemo session. If I remember correctly, this took about 4-5 hours in total. Then we drove about 45 minutes away to another Vince Lombardi clinic for the Radiation. An hour before the IMRT, he was given Amifostine IV to help protect his salivary glands. Our long day ended at about 4 p.m. He had no ill effects from treatment at this early stage.

One thing that helped Ron take his mind off of what was happening during chemo was listening to his favorite music. My sister had sent Ron an entire box full of goodies when he was diagnosed, including a Walkman, various CD's, Live Strong bracelets for the whole family, an inspirational book, and several do rags for when he lost his hair. (He is a Harley rider, so he always wears do rags anyway when he's riding). He never did lose a hair on his head!

September 15, we were at the chemo clinic in the morning for IV fluids. This was a normal part of his treatment. The chemo is so hard on the kidneys that they like it to be flushed out as soon as possible. Ron likes to drink Gatorade also, which helps keep his electrolytes balanced. He has been told to take Compazine about a half hour before each IMRT, which he did during the drive over. Had his Amifostine and radiation with no problems. Later that evening, he started feeling very nauseous. It is a good thing he has the PEG tube in when he doesn't feel like eating anything. Both the chemo clinic and the radiation clinic are very good about giving us plenty of Ensure and Boost to see us through, so we don't actually have to go out and buy it. I guess we're really paying for it anyway, though! Ron actually threw up for the first time on the 16th after his radiation. I was waiting in the car, and I saw him come out of the building. All of a sudden he bent over and threw up in their beautifully landscaped flowerbed! Oh, I felt so bad for him. He had a miserable ride home, holding on to a bucket, and kind of dry heaving. Got home and took more Compazine, and later an Ativan to try to help him sleep.

I think we were both surprised at how soon he experienced the bad stuff we feared. It is such a helpless feeling. I can't really make it better. Yes, I can fix him soup, or give him medication, but other than that, I don't know what to do. Just kind of a miserable night. Thank goodness it was Friday, so he had two days off to look forward to. He was still doing some farming during this time too, when he felt well enough to work. I would get upset at how much he was doing. I thought he should be resting up and conserving his energy, but this is the guy I married. He has never been one to sit still no matter what, and cancer wasn't going to stop him either!

The week of September 19-23 brought some new problems. The Compazine was failing to keep the nausea at bay, so he was given Zofran to try. That didn't work either, so he was told that he could try Kytril. At the time I believe Kytril was fairly new, and the cost was about $100 for ONE pill! Thankfully, we were given enough samples for Ron to take, because he had no prescription insurance. He was also given Salagen this week, because he was beginning to experience dry mouth.

He had two very bad nights this week following radiation. On Thursday and Friday, he had shaking chills and started running a fever. I put him to bed and buried him in blankets, and the bed just shook. I alternated giving him Tylenol and Ibuprofen every 4 hours and felt helpless in between. Of course the worst night was Friday. I called the Lombardi radiation clinic first, and got the answering service. They told me to call the chemo clinic, and then I got THEIR answering service. Their advice=Tylenol. Gee, thanks. I never would have thought of that. I was about ready to bundle him up in the car and drive him to the ER when his fever started responding. I was not happy at all that not one of his doctors called to check on him. Saturday and Sunday he continued to have occasional fevers. I was worried that he may have gotten the flu or some kind of virus because his resistance was so low.

On Monday, the 26th, we met with his Radiation Oncologist before his IMRT. He told us that he thought the shaking chills and fevers were a reaction to the Amifostine, so that was discontinued. That must have been the case, because he never had the problem again. I also told the doctor about my problem on Friday night trying to get ahold of him. He said that never should have happened, that he should have been called immediately, and that he would make sure the answering service would not respond that way again, which I appreciated.

So far Ron has lost 20 pounds. He is still eating when he isn't too nauseated. He sticks to soft foods like scrambled eggs, mashed potatoes and gravy, or rice with gravy, and meat that has been cooked until it's very soft. Also puddings, Jello, cottage cheese, milkshakes. Usually after radiation if he isn't too nauseated, I drive through a fast food restaurant and get him either a shake or a sundae. I also try to get him to drink Carnation Instant Breakfast several times a day for the calories. He supplements with his PEG tube every day also. The easiest way he has found is to use a large syringe without the barrel. He just pours the Ensure or Boost in and lets gravity take over. It takes only a few minutes to get each can in this way. It is always followed by bottled water to flush the tube. His mouth is getting very sore at this point, and his neck very red and dry. He was given special lotion to coat his neck after the radiation. He can't have any lotion on his skin during treatments. Two weeks down, five to go!

In the beginning...

Welcome! This will be a new experience for me. My name is Lori and my husband is Ron. He was diagnosed in 2005 with Oral cancer. Specifically, Squamous Cell Carcinoma of the tongue, stage IV. T1N2M0. I believe this means 1 primary tumor, 2 lymph nodes involved, with no metastases. We are gearing up to fight the oral cancer fight again, so I thought I would start a blog about it. I wish I had known 3 years ago to keep a record of all of Ron's good and bad days. There is so much I have forgotten (or blocked out!) about that time in our lives.

Ron's story began in the spring of 2005. We had been married for 20+ years at that point, and he had always had a limp. His right hip really began hurting and I finally talked him into going to an orthopedist to find out what was wrong. It turns out that when he was a teenager, he got something called Legg–Calvé–Perthes disease, which causes bone death in the hip. The doctor was surprised that Ron could walk at all, as the ball joint of the hip was pretty much gone. He was scheduled for a hip replacement on June 20, 2005. In preparation for the surgery, he was sent to get a complete physical. Now remember, we had been married for over 20 years at this point and I think I had forced him to go to a doctor maybe twice in all that time for illnesses. He is a stubborn farmer whose favorite line was (said in the appropriate accent) "I don't need no stinking doctors." This doctor, who I would love to name as he saved Ron's life, saw an area on the right side of his tongue that looked suspicious. He told Ron that he was sending him to see a Head and Neck surgeon soon after his hip surgery. He had his hip replacement, which went very well, and he came home to recover.

On July 20, 2005, Ron saw the Head and neck surgeon who took a biopsy of the spot. Ron got a phone call the next afternoon and was told that he had malignant squamous cell carcinoma. I will never forget that afternoon. Here he was, still hobbling around with crutches, and now facing an actual life or death situation. July 27 he had an MRI of the head and neck. We met with the surgeon on July 29 and were told that the MRI showed the lesion on the tongue along with some enlarged lymph nodes on the right side of the neck. The treatment plan would start with surgery. Wednesday, August 3, 2005 Ron had a partial glossectomy (about a third of the tongue removed), along with a partial neck dissection. Pathology showed clear margins on the tongue and 2 of 15 lymph nodes positive for SCC. Ron did amazingly well after surgery, and came home the next afternoon. On August 10, we had a follow-up appointment with his Orthopedic Surgeon who took a new X-ray of his right leg and said that his recovery may be somewhat delayed because he now had a stress fracture from the insertion of the rod into his femur!! He then made a joke that I did not appreciate at the time, but it made Ron laugh. Upon hearing that Ron now had cancer, the doctor said "Hey, I told you the replacement would last for the rest of your life--now it will for sure!" Okay, a little too soon for me to be laughing about this cancer!

Anyway, Ron continued to do very well recovering from both surgeries. On August 16 we went to meet his Radiation Oncologist. This is where my world fell apart. I think things just came to a head that day. As I sat there listening to what they would have to do to my husband, I started crying. I didn't want to, I wanted to stay strong for Ron, but everything just sounded so horrible to me. The doctor said first we will have to send you to the dentist to check your teeth, because the radiation will weaken the jaw bone and dry out your mouth, which may cause a lot of problems keeping your teeth. Then you will go have a Port inserted in your chest to receive the chemo and where they can draw blood without having to poke you multiple times. Then you will have a PEG tube inserted into your stomach, because you will not be able to eat or drink normally because of the radiation effects on the mouth. (This is where I lost it. That PEG just sounded so horrible to me. Now, I thank God he had it because even with it, he lost over 50 pounds over the course of treatment). He would have IMRT (Intensity Modulated Radiation Therapy) radiation Monday through Friday for 7 weeks. During this time, he would also get chemotherapy. We would have to discuss which chemo he wanted with the Chemotherapy Oncologist. We left the RO's office with an appointment for a PET/CT fusion. Ron was told to be ready to begin treatments in early September.

On August 17 Ron went to the dentist, where he found out that he had gum disease and several cavities. The dentist sent him to an oral surgeon, and because he was facing radiation, it was suggested that all of his teeth be removed. If they tried to save the teeth, he would have had to have many, many treatments in a Hyperbaric Oxygen chamber. It just seemed like more trouble down the road, so Ron agreed to have all of his remaining 28 teeth pulled the following day, on August 18. (OK, side rant here: before extracting the teeth, Ron was sent back to the regular "dentist" to have molds made for dentures. The dentist took what seemed to be 100 pictures of his smile from every angle possible, and said that the dentures would look like his normal teeth. HA! When we got them fitted about 6 months later they were the big, boxy, impossibly white teeth that are never seen in nature! End of rant.) On August 19, we had the appointment with the Chemotherapy Oncologist. The choice given was 3 treatments of Cisplatin (every three weeks), or Carboplatin with Taxol given every week for the 7 weeks. It was explained that the Cisplatin effects would be just as bad, but since it was given every 3 weeks, there would be more time to recover in between treatments. Ron decided that he would rather puke every three weeks as opposed to weekly, so he went with the Cisplatin. Ron would also be given Amifostine before his radiation to minimize the damage to his salivary glands.

We had a whole ten days off with no appointments except for removal of stitches from his mouth and continued physical therapy for his hip. On August 31, we went up to St. Luke's in Milwaukee for the PET/CT. September 1 he had the Port placement as an out-patient at the local hospital. The following day the PEG tube was placed, also out-patient. On September 6 he was fitted for his mask for radiation. What an instrument of torture this thing was! I am claustrophobic, so it gave me the heebies just imagining having that thing strapped on my face and being screwed down to the table! Thank God it didn't seem to bother Ron! On the 7th, we went to PEG tube teaching to learn how to care for his new appendage. Ron got a phone call later that day saying that something happened and he would have to go back to St. Luke's to repeat the PET the following day, the 8th. September 9 was another appointment with the Chemotherapy Oncologist to set up his chemo. The 13th, he had his radiation dry run to set correct position, etc. More to come...