Deja Vu...

All was well with Ron until July of 2008. He had continued to have CT and PET scans every three months since 2005 and they were all clear. Things had really returned to "normal", at least our new normal. He could and did eat anything, even without teeth. Sometime in July he had eaten some potato chips and felt like one had made a sore in his mouth, on his right cheek. He had me look several times with a flashlight, but I really could not see any obvious wound. There was a small white area, and again, as he was not scheduled for any doctor visits for months, I told him we should go to his surgeon so he could check it out. I made the appointment for August 13, 2008.

I was not at all prepared for what we were told at this appointment. Later that night Ron said that he knew what was happening but didn't want to tell me. So the surgeon looked at Ron's cheek and said "Oh yeah, that doesn't look good at all. I think it's cancer again." He then showed me the lesion, and I swear it was so big I don't have any idea how I could not see it at home. The surgeon felt that this time there would be bone involved, which would have to be reconstructed. Since the local hospital, where Ron had his original surgery, did not have a Plastic Surgeon available, he told us that he was sending us to his brother in Milwaukee. His brother is also an ENT Surgeon, one of the top in his field. We would consult with him and he would bring in a Plastic Surgeon to do the reconstruction part of the surgery. Ron took all of this in stride, as he always does, but I can say that I left there in shock and just devastated.

When we got home, Ron went out to the barn to talk to his brother. I was sitting on the steps outside having a cry when Ron came up and just patted my shoulder. I said "I just didn't want you to have to go through all this again", and he made a dismissive motion with his hand and said "Ah, this is nothing. I'll be fine." He really amazes me. I don't know how, after all he has been through, he can keep his positive attitude. I then went in and called my sister, who is my best friend and counsel. She always helps me cope and helps me think of things to do first. She suggested that we should call Ron's Oncologist and let him know what was happening, and ask for a PET and CT scan immediately. Ron's appointment with the surgeon in Milwaukee was scheduled for the following week, but we felt that we should get scans done first, in case we were looking at more than a localized lesion. The Oncologist agreed, and also wanted to see Ron. Later that evening, I told the kids. Well, they're not really kids anymore, they are all young adults. Our youngest is 20, and we also have a niece living with us who is 19. It went as well as it could, I suppose. They were all very upset. Our oldest daughter is engaged and planning to marry soon, and I told her that she can't change her plans. Life cannot be put on hold, and I told her that if humanly possible, her dad would be there at her wedding.

On Monday, August 18, we saw the Oncologist. He felt the lesion and said it was about 3 cm., a Stage II at this point. He reminded us, as he always did, that this cancer was particularly difficult to "cure." He said that Ron had done so well for three years, he was hoping that he would be one that would make it. Well, didn't we all. Cancer is such an insidious disease in more ways than one. Once you or someone you love has been diagnosed, every single day you think about it. Oh, that pain, could that be the cancer again? Oh, he's so tired, I wonder if the cancer is back. Every little thing brings the thought of cancer to mind. And with every year that passes with the cancer gone, you get a little bolder. Thinking there's no way it could come back now, look he's made it for three years already. I know in my mind, I was waiting for the 5 year mark. His Oncologist had told us that they never consider this cancer "cured" even after 5 years, but in my mind, that was the marker. I thought that if Ron made 5 years, we would be able to relax and perhaps not think about it every day anymore. Ah well...

Ron had a PET scan on the 19th and a CT scan on the 20th. He also had a routine appointment with his Cardiologist on the 20th, where he had an EKG, which was fine. I (kind of) jokingly told the Cardiologist that the low-fat diet was out the window for now, and that I had asked Ron to please gain about 50 pounds in the next week. I just remember how much weight he lost the first time, and with what sounds like even more surgery on his mouth, I imagine he will lose quite a bit of weight. The doctor said not to worry about diet at this point, just warned him to try not to take in too much salt. Okay, that we can do. Ron's weight at this visit was 183 pounds. The doctor wished us all the best with the upcoming ordeal. On the way home we stopped to get a few groceries, and while in the store, the Oncologist's office called Ron. They wanted to see him the following morning as soon as the office opened up. I of course, being the glass half-empty person, thought this must mean that the PET was worse than expected. Unfortunately, we could not go to the Oncologist that early because our appointment with the surgeon in Milwaukee was for 10:30, so we would be leaving at about 9 a.m. They told Ron to call after our appointment was done in Milwaukee, and we could stop to see the Oncologist after that.

Thursday, August 21. The big appointment with the Surgeon was here. I will just say right now that he was nothing like his brother. And in case I haven't said it before, I like and respect his brother very much. He did the usual exam and went over Ron's history. He said that it would be a 6-8 hour operation, and more than likely Ron would have to have a Fibular Free Flap, probably a tracheotomy, a nasal feeding tube, and that he would be in the hospital for a week. He would set up an appointment with the Plastic Surgeon he works with, who could tell Ron more about the reconstructive aspect of the surgery. We left there and went to see the Oncologist again. As soon as he came in the room he said, "Oh Ron, we will not cure this cancer." He went on say that he had talked to the surgeon, and the surgeon basically asked why we were bothering to do the surgery at all. The Oncologist told him that we were going to do everything we could to save Ron. Wow, that reinforced my first impression of the surgeon, that's for sure. He also told us that Ron would have Chemo again, and that he would discuss with the RO the possibility of further radiation. One of the things Ron is dreading if he has chemo again is, the first thing that hits you when you open the clinic door is the stench of really strong, almost burnt coffee. This aroma permeates every inch of the place. Now, Ron loves coffee, but when you are already nauseous, that smell just further turns your stomach. Even I would leave there nauseated. I can't believe that they haven't had tons of complaints about that, with all of the cancer patients they see every day.

Our appointment with the Plastic Surgeon was on August 28. He was a very personable and funny man, which always makes Ron feel more comfortable. He did an exam and took several photos of Ron's mouth. He agreed with the surgeon that it would be about a 6-8 hour operation, possibly longer. He is fully expecting mandible involvement, which means that they will take the middle section of a Fibula bone from his leg to reconstruct the jawbone. He also said he will probably do a free flap from a forearm to fill in the cheek area. The main incision will be from the center of his bottom lip, down through the chin, and over to the right on his neck so they can then basically "peel" this area back to work. Ugh, I hate even writing that. I just can't imagine the pain he will be in. Ron does love his scars though, so he should have plenty to show off after this. He has a very warped sense of humor and I think he loves the shock factor.

So now we wait. Ron got the call the following week that his surgery was scheduled for September 30. I was quite upset by that. It was a whole month away! I felt that there should have been more of a sense of urgency about it. He was also now feeling quite a bit of pain that was keeping him awake at night. I called the Oncologists office and asked for pain medication. I'm not sure who I talked to, but I had never dealt with her before. She acted like we were drug seeking, and said that they would call in a small prescription, but that if he had more pain, he should call the surgeon. The Oncologist also felt that the date for surgery was not too far away, so we left it at that. I still felt quite nervous about that, though. I did end up calling Ron's original surgeon to ask for more pain medication, and he called Ron back personally to tell him how important it was to stay on top of the pain. He ordered a more than adequate supply of Vicodin, thank God. If they only knew that I usually have to practically order him to take it at all! We are now also smarter about opiates and he is also taking Colace, Dulcolax when needed, and prune juice to prevent problems.

We had one more appointment with the Oncologist on September 25. Ron had blood work done, and the doctor did another examination. He was shocked at how much bigger the lesion was, and felt that now for sure there would be bone involvement. This is where my anger comes from. We have waited for over a month now since he was diagnosed with the recurrence, just giving the cancer plenty of time to grow at will. So now, he will have to have a more extensive surgery that may not have been necessary if they would have done it immediately. Sometimes you just want to scream at somebody, but who??? The Oncologist again said that from now on the cancer will be treated, not cured. He said that the surgeon will probably say again that they got it all, but it will not be true. He said that after treatment, we may get another three years. I so hope he is wrong about this, and that Ron can beat the odds. If it were only depending on attitude, Ron would beat it for sure. He is the most positive, ridiculously up-beat person I know. I am naturally kind of a depressive, moody person and he has made me laugh at least once a day for 25 years now. I can't think of anything better than that...except more of it.

Now a triple bypass?

Sometime in April 2007, Ron started coming in complaining about shortness of breath. Of course, I immediately thought maybe the cancer was back and had metastasized to his lungs. He wasn't scheduled for another check-up until about 3 months later. I told him we were not waiting that long. He wasn't too happy about that, and thought it was nothing to worry about, but I wasn't convinced. I called his Oncologist and explained his new symptoms. On May 14, he was seen and had blood work done along with a CT scan which showed some calcifications around his heart. The doctor wanted to follow up, so two days later Ron went for Pulmonary Function Tests (which came out fine), and a stress test.

He lasted approximately three minutes on the treadmill before the doctor stopped him because he was so worried he would collapse right then. He was sent for an immediate cardiac catheterization, which showed 3 very bad blockages. He spent the night in the ICU so he could be monitored. The following day, May 17, he was transferred to St. Luke's in Milwaukee by ambulance. On May 18 he had a triple bypass. The surgery went very well, but he came out of it with tubes everywhere. He had three chest tubes along with a central line for instant medication access. He also had a catheter, which I think bothered him more than anything else. He was of course on heavy duty pain medication, so he mostly slept for the first 24 hours. My sister had come up to be with us in the hospital, which was so appreciated. She is an OB RN, so she's a good resource for medical questions. The following day, Ron was moved to the Telemetry floor. He got to the elevator by standing behind a wheelchair and pushing it down the hall probably at least 50 feet. My sister was so impressed by that because she said she has C-section patients that don't even want to get out of bed on the second day.

On May 20 Ron had his chest tubes removed. He had been losing quite a lot of blood through them, so he received a blood transfusion. The following day he got all his IV's removed, and also got another blood transfusion. On the 22nd, the pacemaker wires were removed for the telemetry. Ron came home on the 23rd, only 5 days post-op. Part of his home care was keeping all of his wounds clean and dry. On May 29th, I noticed the left chest tube site was getting a little pussy looking. I called the doctor and was told to leave it open to the air. For the next two days, he ran a fever on and off, and the site became more reddened. On Friday, June 1, he got progressively worse with fever and obvious signs of infection. I tried to call every doctor on his heart team, but could not get ahold of any of them. I finally that evening took him to the local urgent care. They immediately diagnosed an infection along with a pleural effusion. They started him on IV Cipro, and tried to get ahold of his cardiac surgeon. They finally got ahold of him about 2 hours later, and he was transferred by ambulance to St. Luke's again. He spent two nights there receiving IV antibiotics.

Once he got home again, he was very lethargic and weak. He also still continued to run fairly high fevers on and off. He spent a lot of time just sleeping. The pain wasn't too bad at this point, but he has never been one to take pain medication unless I tell him he needs it. He really wanted to get back on his Harley, but the doctor told him to wait two or three more weeks. He really healed fairly quickly, and he said that compared to the cancer treatment, this was nothing. We had another small scare in August when he felt two nodules on his right neck at the site of his previous cancer surgery. He was sent back to the head and neck surgeon who felt sure that they were undisolved stitches. Thank God! I don't think we could take any more bad news at this point.

Aftermath...

Ron's last day of treatment was October 28, 2005. While this day was certainly a cause for celebration, it was by no means the end of his problems. In fact, he actually had his worst days in the weeks following. He continued to be in a lot of pain, which meant he was still on the Fentanyl patches, also taking either Tylenol 3's or Vicodin. Now, this is not always explained to patients, but that many painkillers have a bad side effect of bowel impaction. I will try not to get too graphic, but I think caregivers should know that this may happen. Ron did, in fact, get impacted and I had to "assist" him in relieving it. Thankfully, I used to be a Nurses Aide, so I was equipped to handle this. It was not a pleasant experience for either of us, but when your loved one is in pain, you do whatever you can to relieve that pain. He had been taking stool softeners all along to try to prevent this, but they did not. So I'm just pointing out that this may happen. And, as you can imagine, that only adds to any other discomfort that is happening.

Ron also vomited more in the two weeks following treatment, for some reason. He lost a total of about 50 pounds by the time he was all done. He was still also going in for blood tests, and continued to receive Aranesp for low RBC's and Neupogen for low WBC's. I was quite worried at this point about his low immunity, and the possibility of him catching something from either myself, who works in a High School and is constantly around sick teenagers, or one of our own teenagers being ill. I think if he had caught even a common cold at that time, he would have ended up in the hospital. Thankfully, that didn't happen.

By the middle of November, his blood work started coming back in the normal range. He reached his lowest weight of 167. Before cancer, his weight was about 225. He had huge biceps from farming and a fair sized "beer belly", even though he didn't drink all that much beer. At treatments end, he had really no muscle mass left. It would be a long road to build himself up again. The first week of December, he had both PET and CT scans, and they both came back clear! YAY! Looks like all the pain was worth it.

The rest of December and January was spent with the Dentist and Oral Surgeon preparing his mouth for dentures. He had to have some bone shaved from his gums, and let that heal. He got his dentures February 1. His Port and PEG were removed on February 5, 2005. That was a good day, to get that PEG removed. As much as we know he needed it, it was a constant source of irritation to deal with. Two weeks after getting and wearing the dentures, he had a check at the Dentist, and he noticed a "spot" on the floor of Ron's mouth. He was told not to wear the bottom denture to let it heal. On March 1st, at another check, the Dentist found another "spot". Now he was sent to the Oral Surgeon, who in turn sent him to his ENT Surgeon that did the original surgery. It was decided that he could take no chances, so another surgery was done on March 13. Thankfully, it was completely benign!

For the next year, Ron went for CT and PET scans every three months. Nothing ever showed up on any of them, thank God. He continued to struggle with the teeth issue. He now only wears the upper denture, and that is usually only when I "make" him. He would be just as happy to not wear them at all, and can even eat steak with no teeth. Don't ask me how, I don't think I could do that! So 2006 was a year of adapting to a new normal, healing, getting clear scans, frequent doctor visits to make sure no other issues cropped up, and Ron getting back to full-time farming. Oh, by the way, his new hip was working great now, too! So glad he had that hip replacement.

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!