A year has passed since Mr. Fixit's cancer was found. It's been a very difficult year, but he is doing well. Apparently, the size and number of lesions in his lungs are stable. He's feeling okay physically, but he is depressed sometimes. It's understandable. I'm just a little tired and stressed and still a little scared about the future. I happy he's okay.

The Latest Side Effect

When Mr. Fixit had his last appointment with the oncologist, he complained of a problem with his fingertips. He described it as numbness, but he indicated that there is pain involved working with his fingers, i.e., buttoning his shirt or opening jars. The doctor prescribed a new medication for the problem. Apparently, it’s a side effect of his cancer medication.

He took the medicine for a few days but then developed a rash on his legs similar to that he had when he began the oral cancer drug. I suggested that he stop the medication because that was the only new thing brought in. I told him he had to decide which was worse, the numbness or the rash. He said the rash was worse.

Yesterday I called the office because even though he hadn’t taken the new medicine for a few days the rash was worse. It now covers almost his whole body and was a very angry red. He said it itches when the rash first appears. The nurse suggested that he take Benadryl, Claritin, and Zantac. 

After we arrived at the pharmacy, I realized that Zantac is used for heartburn. I thought maybe I made a mistake, and she had actually said “Zyrtec.” I called to check and she said that Zantac was the right one. Who knew heartburn medication could be used to treat allergic reactions? Not me, that’s for sure.

Today the rash is still there, but it does look better. It’s not as red as it was.

The Results

The results were good. There has been no change in the nodules, and the doctor says that what he was looking for.

He did drop one little bomb on us. Some time ago he had mentioned that he keeps is patients on this oral chemo drug for at least a year. Yesterday he said that Mr. Fixit will have to stay on it for the rest of his life. He also said that the nodules will never go away completely. That’s not what he had said before.

The doctor gave him a prescription for a new medication for the neuropathy in his finger tips. Mr. Fixit say that they hurt. We’ll see how that works out.

He scheduled another monthly visit and indicated another round of scans will be scheduled in four months.

All in all, it was very good news. I’m relieved, but I’m not feeling well about the nodules never disappearing and the idea that Mr. Fixit will have to take the chemo meds for the rest of his life. He is very disappointed about that. Some of the side effects are curtailing his quality of life. I suggested to him that the problems are minor, but discomfiting, when you think that this drug has prolonged his life.

Monthly Update

Mr. Fixit has been doing quite well for the last months. He had an appointment with his GP a few days ago. His blood work was great. He has an appt. with the oncologist on Friday just for a check-up. He has been feeling well enough to do some painting on some of the rental properties that our son owns, and he painted a picket fence for our other son.

Dr. Appointment

Mr. Fixit had an appointment yesterday with his cancer guy. He said the blood work looked great. That’s good news. He has another appointment in September and then another scan in October.

The doctor also said that his side effects should lessen the longer he takes the medicine. He seems to be doing better with the symptoms, but even with the good news with each doctor appt., he seems to be a little depressed. I’m the only one that he allows to see it. I know it must be hard for him. I have no clue what it’s like to have this life-threatening illness or how to help him.

Another Day, Another Side Effect

Monday, a week after the prescription for Mr. Fixit’s nausea medication was sent to the pharmacy, the insurance company called and said that an override had been issued, and the prescription would be filled. I waited for the pharmacy to call. Nothing. I went by the pharmacy Tuesday to find out the status. No one had alerted the pharmacy about the override. They called the insurer, and we finally obtained the medicine late Tuesday afternoon.

When I called the doctor’s office to see if he could continue taking the OTC stuff, they advised against it. It’s a good thing that the override was in place.

Before Mr. Fixit began taking the cancer drug, the doctor warned him of several side effects, one of which is a rash. He told us what to do about it. Yesterday he noticed that he has a rash.

He has been taking this cancer drug since March 27, beginning with the strongest dosage allowed. At first, he had no side effects at all unless you want to count his sudden need for speed in the car. He then developed a bit of intestinal upset and a few weird aches and pains. That’s when the dosage was cut in half.

Then the nausea and intestinal upset worsened. Tiredness kick in big time. He was taking two or three naps a day. His hair is falling out, and his eyelashes have all but disappeared.

I just don’t know why after all this time these side effects are happening. It seems to me that they should have manifested when he was taking the maximum dose. Perhaps it’s simply the accumulation of the chemicals in his system.

Another Problem–What a Surprise!

Monday the doctor told us he was going to send a prescription to combat Mr. Fixit’s nausea to our pharmacy. We waited all day for a call telling us the prescription was ready. No call. Tuesday morning I went to the pharmacy to see if the order from the doctor had been received. It hadn’t been. I came home and called the doctor’s office. Of course, I had to talk to a machine instead of a person. No one called me back to acknowledge my call or to explain why the order hadn’t been sent.

Ben called and the receptionist said she would transfer his call to someone, and he said he wanted to speak with a real person, not someone’s voice mail. He found out they had sent in the order after my call.

We waited and waited and waited. I called the pharmacy in the afternoon. She said they had received the  order, but the insurance company wasn’t going to pay for it. I said, “How much is it?” I was planning to pay for it. After all, how much could a medicine to ease nausea be? Pepto and Kaopectate aren’t that expensive. She said, “$285.” After I rose from the floor and made a comment as to the exorbitant price, she said she would tell the doctor that the insurance had refused to pay. She said it is possible for the doctor to approach the insurance company to ask for reconsideration.

Here it is the next evening and Mr. Fixit still doesn’t have the medicine or even an indication of what is happening.

But the good news is his $5.00 bottle of Kaopectate is working fine. His nausea is almost totally gone. I have to find out if there is any conflict with any of his other meds, how much he can take daily, and how long he can take it.I’ll call again tomorrow and talk to the machine again. Maybe I’ll have an answer before our appointment in a month.

Good News!

Yesterday the doctor reviewed Mr. Fixit’s latest scan with us. The new was great! Some of the nodules have completely disappeared and the larger ones have decreased in size considerably.

The doctor said that only 20 per cent of patients taking this drug have results like this. He made an appointment for Mr. Fixit in a month, and said he needed another scan in four months. He even talked about that maybe after a year, we could discuss taking discontinuing the medication completely.

I thought the news would ease Mr. Fixit’s depression, but it doesn’t seem to have helped it much. He is still down when it’s just me with him. When other people are around or he talks with his family on the phone, he is his old self. The doctor said that he was going to send in a prescription to our pharmacy for the nausea, but something happened and we don’t have it yet. Maybe that has something to do with his bad mood, or maybe he’s sick and tired of me and bland food.

But what a load off my mind! I was so scared; I was running through scenarios that would allow me to skip this appointment. But that was just my little fantasy; I went and heard the wonderful news in person.

Side Effects

Mr. Fixit still isn’t feeling well. He is still having nausea and digestive problems. I think his depression is getting worse. He noticed that his hair is thinning, and I noticed that his eyelashes are disappearing. He’s lost more weight.

Tomorrow is his appointment to hear the results of the scan. I hope it’s good news.

Mr. Fixit went for his scan today. Of course, there was a problem. It seems there is always a problem for him. He had an allergic reaction to the dye. He's has had these scans before without a problem. I wonder if the chemo could have changed his body chemistry or something.It wasn't bad, but he was more than a little nervous. The upshot is that he won't be able to have the scans done at an outpatient facility. He will have to go to the hospital. Now we wait.

Not Such Good News

Mr. Fixit hasn’t been feeling well since they halved his medication. His heart problems have been regulated, but there are still some side effects that are bothering him. He seems to be very depressed. I was hoping he would be feeling better by now, but he naps twice a day and doesn’t feel like doing anything. He has been losing weight also.

The scan is this coming Wednesday. I hope it shows good things. I wish he had been able to tolerate the original dose of his meds. Maybe there would be enough improvement that he could stop the chemo completely. He just couldn’t take it. The weird thing is he seems to be feeling worse now than he did before.

I don’t know how to deal with his depression. There is nothing I can say that will make him feel better. He gets a little testy when I try to be upbeat, and I can understand that completely. I don’t know how to walk the line between being annoying Miss Merry Sunshine and being supportive without the syrup as it were.

We won’t get the results of the scan until July 7. The appointment had been made for two days after the scan, but they called and rescheduled. The doctor will be out of town. Waiting won’t be easy on him.

Good Check-ups

Mr. Fixit has now seen the oncologist and the cardiologist and has had the echocardiogram and more blood work.

The cancer guy (as we refer to him) cut his chemo med dosage in half. He said it should help with the side effects. I questioned whether it could lessen the effectiveness, but he said something to the effect that I shouldn’t worry about it. Uh-huh. Mr. Fixit also talked to him about the neck/throat pain he has been having. The doctor said he had never heard of that particular side effect with his medication. (I am more than a little worried about this. He has hoarseness and a cough.) He (the doctor) didn’t offer any suggestion as to what it might be. Mr. Fixit has a scan later this month to check on the lung lesions. (Lesions? I have this weird aversion to saying the dreaded “C” word. I had a hard time naming this journal.)

We saw the heart guy yesterday. He said that everything looked good. In fact, he said that the “echo” looked better than it did a year ago. He wasn’t too concerned either about this unstable  heart rate (which has, since the digoxin, has settled a bit) or the possibility of stroke. The nurse practitioner at his office was ready to admit him into the hospital when she saw the heart rate jump. Big difference of opinion, I guess.

All in all, things seem to be going a little better although Mr. Fixit is still uncomfortable with some of the annoying digestive system problems. He gets a little depressed and testy.

Tip of the day: Keep copies of all paperwork including appointment cards an memos. When they tell you to bring your meds and insurance cards, drop the appointment info into you pocket even if the appointment has been confirmed.

Update

We were able to see the nurse practitioner at the cardio’s office. She didn’t have that much to contribute towards answering my questions during the consultation. She prescribed digoxin to help control the pulse rate, and she suggested a heart monitor  be worn for 48 hours. As they were attaching the monitor, his pulse rate soared to 165. The NP was called into the tech’s office, and her  reaction was immediate hospitalization. By the time she explained the admitting procedure, the heart rate took a dive. She changed her mind and said to use the monitor. We turned it on Tuesday, the day after the holiday. (We have not heard any results yet.)

An appointment was made for him to have an “echo” something or the other, blood work, and a return appointment for July 6. After we arrived home, I noticed the appt. card had the wrong name. When we returned to monitor, we brought the error to the scheduler’s attention. She didn’t know what was going on. She wouldn’t just change the name. She moved his appointment back to July 10. Another one of aggravating little staff errors that make me crazy.

The digoxin didn’t work immediately as I thought it would; we had a couple of days of the accelerated pulse and other uncomfortable symptoms for him and extreme worry for me. He now seems to be doing better. The episodes have subsided a bit.

Friday we had an appt. with the oncologist. He cut the dosage of the oral chemo meds in half. Mr. Fixit has been on the reduced dose for two days. He was scheduled for another scan to check on the status of the tumors toward the end of June.

Some of his family from Connecticut came to visit. They were in Myrtle Beach for a few days and made the 4 1/2 hour trip to see him. We had no problems during the visit, but they only stayed a few hours. He did have a problem shortly after they left.

We were also notified that his potassium levels are back in the normal range. This info came from the blood tests done at the cancer institute before his appointment—same day service. We still haven’t heard from the test he had done at the family doctor’s office; I’m surprised and a little disappointed that they didn’t let us kmow something. Perhaps I expect too much.

Yea for the NP and Her Assistant!

We spoke with the nurse practitioner late yesterday afternoon. When I asked my main question, she said that anytime his pulse rate goes over 100 and stays that way for a length of time (The time was left a little nebulous), I should call 911. His pulse rate jumps to over 150 sometimes.

I explained the problem I was having seeing the cardiologist and she said her assistant would see to it, heh, heh. The assistant called this morning before 9:00 am saying we have an appointment today at 2:15.

The NP also ordered another potassium test for this morning, but we won’t get the results until probably next Tuesday.

I hope they can give him something for his problem. His heart rate goes high, but his blood pressure drops very low. He is now having more than one episode a day. And he gets so tired. Today he barely made it up the steps when we cam home.

How Silly of Me to Ask!

The call was finally returned at 4:40 pm, but the result was not helpful. I explained Mr. Fixit’s situation with the cancer and the medication for that and the potassium problem to the scheduler. She said the earliest opening was July 6. I said, “We need some help now. He’s having these episodes. Do you think the physician assistant has an earlier opening?” She said his earliest time available was in two weeks.

I said, “What am I supposed to do if this happens again? When does he need emergency treatment?”

She said, “I can’t help you with that. I can put you through to the nurse’s voice mail and she can call you back tomorrow.” I said, “I’ll call her tomorrow.” I really didn’t want to talk to voice mail again. I wanted to speak with a human who could tell us what to do or to offer some suggestion as to the cause of the heart problem. This is a heart problem, not some little trivial thing.

Maybe I’m not up on the latest medical etiquette. Perhaps you don’t call your heart specialist with heart problems. Could it be they only do check-ups and hospital visits? Maybe I screwed up.

Tomorrow I’m going to call the nurse practitioner he has been seeing for things not requiring a specialist. I know she will find time for us and will answer the questions we have or find the answers. I also want to ask if I was out of line expecting help from the specialist. I think I can count of her to answer the questions or to help us understand what steps should be taken if the episodes worsen.

Breathe in, Breathe out

O-o-o-m-m-m, o-o-o-m-m-m. An hour has passed since my last post and I still haven’t received a call back. I have calmed down a bit; not completely, but a bit.

I know that the schedulers in medical offices do more than make appointments for patient visits. I realize, too, that their jobs must be stressful indeed. They not have to schedule appointments, but some (I’m not sure that all) also have the logistical nightmare of scheduling surgeries. I wouldn’t want that job.

But I will say that having your call made during regular business hours to a doctor’s office forwarded to voice mail is more than a little off-putting.

O-o-o-m-m-m, o-o-o-m-m-m, cleansing breath.

Patience in Short Supply

Mr. Fixit has developed a few problems with his heart in the last few weeks. I don’t know whether they’re related to his cancer medication, his potassium problems, or his heart medication. Last night he had another episode, and I decided it was time to talk to the cardiologist.

I called this morning at 10:00 am to make the appointment. The first two times I called I could barely hear the receptionist, and she couldn’t hear me. I hung up and called again. Again, the connection problem. Just as I was ready to hang up again, the reception cleared and we could hear each other. I was directed to the doctor’s scheduler. My call was forwarded to the scheduler’s voice mail. I left my name, phone number, Mr. Fixit’s name (which I spelled) and a request for an appointment. I also gave a short summary of the problems he is having. I repeated my phone number at the end of the call.

It is now 11:30 am and I haven’t received a call back. Am I being too impatient? I’ve been in that office and spoken with the schedulers. I have never seen any of them with patients waiting. You make your appointment and leave—five minutes usually. I assume they have other duties beside making appointments, but I assume that scheduling is the main task. When I don’t receive a call-back in what I consider a timely manner, I get a bit perturbed. It’s not like I call constantly being a nuisance. I have never requested an appointment other than the first one and the short exam before the kidney surgery. We’ve never had occasion to make appointments other than his regular check-ups. It would have taken no more than five minutes I would think to make an appointment.

I realize that I am more than a little tense and testy lately, but, darn it, this is my husband’s well-being that we’re talking about here. It seems to me that people in medical offices should realize that their patients are stressed and would take that into account when prioritizing their work.

Lab Results

The results of Mr. Fixit's lab work showed that his potassium level has dropped to an acceptable 5.2. The normal range is 3.1 to 5.1, but the nurse practitioner said he could resume his normal diet with the exception of bananas. I suggested he also avoid tomatoes and nuts which are extremely high in potassium. I was a little disappointed because I thought it would be much lower since he hasn't been eating any of the foods on the high potassium list. I promised him pot roast today. It was a no-no because potatoes and carrots have extreme amounts of potassium. We'll have to wait and see, I suppose.

Stress

(I wonder if Blogger will let me do my own paragraphing. It seems to have taken over and is not dividing my text where I want new paragraphs. In fact, it has decided that I only need one paragraph throughout. I realized paragraphing is somewhat subjective, but, darn it, if I want more than one paragraph, let me have more than one. See? I'm a little stressed today.) The consequences of Mr. Fixit's high potassium levels could have dire consequences. I so confused about what he should be eating. It seems that most most vegetables have scads of potassium. I'm at my wit's end. No tomato products, no bananas (which is is favorite fruit), no broccoli, no carrots, no dried beans, no potatoes, no almost-every-other-vegetable I can think of. When you consider this low potassium thing along with his low cholesterol, I spend more time researching on-line than I do actually cooking. The thing is, it's probably my fault he's having this problem. I thought I was improving his diet after his kidney removal and the cancer diagnosis. Most of the stuff he was eating is extremely high in potassium. I wonder why someone didn't mention after the kidney removal that this could be a problem. I had absolutely no idea. He has another appointment for labs Wednesday to see if the level have dropped to an acceptable level. I hope so, and I hope someone will talk to us about his diet. __________________________________________________________ Note: Dammit! There is supposed to be four paragraphs; the Blogger/Google gods who know EVERYTHING seem to think One should be enough.

Check-up

Today Mr. Fixit had blood work and a chat with the nurse practitioner. She provided answers for a couple of little problems and said the results of the labs were good. After we came home, she called and said that she noticed that his postassium levels were too high. She said that it could cause cardiac problems. I told her he had been eating a couple of bananas a day, and she said that could be the problem. I checked on the computer for high potassium foods and found we had in the last few days several that were on the high potassium list. The NP said that she wanted a do another test the middle of next week. We were supposed to get a call to set up the appointment this afternoon, but I missed the call. I'll have to call Monday.

Not So Good Today

Mr. Fixit isn't feeling well today. He is having a digestive problem that we were told could be a consequence of the medication, and he says he's feeling tired. That can also be blamed on the medication. When he doesn't feel well, he gets a little grumpy. I know I probably would be grumpy, too. He went to paint this morning, but came home about 2:00 pm. I fixed his lunch as suggested in the literature, but he still isn't up to par. He's lying down now. Let's hope that the change in his diet will ease the symptoms he's having.

. . .Oh, What a Relief It Is

It seems as if every little thing has become a major cause for concern since Mr. Fixit's diagnosis. Sometimes I don't realize how uptight I get. The refill for his meds was promised for Thursday. As the day worn on, I began to get a little worried. By 3:00 pm, I was worried that something had stalled the delivery. What if they lost it? What if the company had decided to drop production? You can see how nuts I get. By 4:30, I looking through the literature to see what procedure to follow if it didn't come. Finally, just before 5:00 pm, the Fedex man rang the doorbell. If about that time yesterday you heard a strange noise, it was only my sigh of relief.

Wonders of Wonders

Today was the day to call for a refill of Mr. Fixit's cancer medicine. As I mentioned before, the refills are shipped from a Walgreen's specialty pharmacy in Pennsylvania. I was advised to call for the refill ten days before the month's supply runs out. When I called, of course, I was told by their computer to push 1 for this, 2 for that, 3 for the other, etc., etc. None of them seemed to apply to me so I just waited until something familiar came along. Finally, "Hey, I think I'll try this one." Now I know this may be hard to believe, but I connected to a Real Person. I was so excited! I gave her almost all the pertinent information (she didn't need the prescription number), and she said that we should receive the meds on Thursday. Wow! I was unprepared for simplicity and the speed of the shipment. Yea! for Walgreen's!

So Far, So Good

Mr. Fixit is doing very well. He seems to be having few side effects from the medication, although I have noticed that he seems to be tiring a bit more. He was at the trailer park painting and came home at 5:00 pm. He went to bed very, very early and didn't get up until the next morning. He was a little depressed yesterday, but he won't talk to me. He had only one medical appointment this past week; it was for labs only. He doesn't have an appointment for two weeks. I assume they will call if a problem shows in the blood tests.

Yippee!

Mr. Fixit had his first checkup since beginning his oral chemo. The doctor said his labs were all normal, and he lungs sound fine.

He has had no side effects, but the doctor said it could happen. He said the lack of symptoms bodes well though. He needs labs again in two weeks and then in another two weeks, more blood work and an office visit. In three months, there will be another scan to check on the lungs.

As we were sitting in the waiting room, I realized how lucky we are. There were several women who were in various stages of hair loss, several people in wheel chairs, some with walkers. Some appeared to have lost much weight.  One man requested refills of his powerful pain meds that he takes every four hours. Mr. Fixit was talking about going to paint some of our son's trailers after his appointment. I am so grateful for both his quality of life now and for the possibility of a good outcome.

First Side Effect

Last night Mr. Fixit suffered what we suspect is his first sign of side effects. He had pain in his shin and his feet swelled and the veins were popping out. His feet looked like a body builder's muscles pumping iron. I suggested Tylenol and propping his feet up in bed. He said this morning it took about an hour for pain relief and the swelling was gone when he got up.

I should have asked the doctor what to do about the possible side effects. The only thing he said was to use a body lotion if a rash develops. Of course, all this stuff happens on the weekends.

Other than that, he is feeling great. Today he is going to help our older son paint some of his rentals.

Getting It Right

When we received the first week's supply of Mr. Fixit's medicine, the instructions from the pharmacist and written on the medicine container indicated that he should take four pills at a time. Then we received from another pharmacist in another state a month's supply. The instructions on the container was to take "four tablets a day." The instructions could be construed to mean to completely different things. If the first pharmacist was wrong and he was meant to take four tablets during the day, then it could be if he took them all at the same time, it could cause an overdose or some such thing. However, if the second instruction was followed to take four daily (that could mean one every 4 or 5 hours), it could diminish its effectiveness.

I called our local doctor's office this morning for clarification. The call was placed at 9:12 am. I received an answer at 10 am. Now that's the way it should be! Hooray, for them!

Tip of the Day: After the cancer diagnosis, a pad and pencil should be available at every phone in your house. It is important to note the time, the person you are speaking with and his/her phone number, and the information imparted. It may be necessary to know the exact information at a later time, or just to refresh your memory.

Mr. Fixit is trying to keep busy. He's feeling very well so far.

Intro to "Cancer 101"

Since December, 2013, my husband (Mr. Fixit) and I have been living with the spector of cancer. A large tumor was found in his kidney, and now the doctor say it present in both lungs. The last few months haven't been easy; I decided to write this journal so I could have a record of the progression, or the non-progression, of his disease.

I can only write from my own perspective. No one can know what's in another person's mind when he is facing what could be a tortuous path. I don't know his fears; I only know mine. I can't know his anger; I only know mine. I can't imagine what he's feeling at this time. My one hope is that the medication he has begun will stop the spread. The doctors seems optimistic.

It began December 20, 2013. He was complaining of back pain. He later developed nausea. That's when I suspected that he had a kidney stone. At the emergency room, a stone was found in the tube leading from the kidney to the bladder. They also found a large mass in his kidney. After a scan was done, a doctor came into the room where I was waiting. He had a big smile. I was sure at that moment there was nothing to worry about. He then said, "Your husband has cancer." He still had the big smile. Needless to say, I was not smiling. This was the first of several disturbing events since that night.

The kidney oncologist recommended removal of the kidney. As a preliminary step, a stent was placed around the stone. That was done December 24. He came home the same day. The removal of the kidney was planned for 2 weeks later, but it was postponed until the beginning of February because that was the first date available. During that time we had doctor visits, scans, lab tests, etc. It seemed like there was something to be done every day. That's not factual, but it seemed like it at the time.

During that time-frame there were several other little disturbing incidents. Happily, none of them could be lain at the feet of the doctors. Their staffs proved to be a little lax on the details, like sending us to a therapy session that was not necessary and side-stepping the truth when mistakes came up. It's call CYA. I don't care for it.

The kidney was removed and there was no spread in the abdomen. However, there was spread to the lungs. The doctors said that was the usual course of kidney cancer; it metastasizes to the lungs. Instead of chemotherapy, the doctor recommended an oral medication. The literature accompanying the medication described it as "chemotherapy." The doctor says that there was few side effects, but the literature suggests that all the side effects of regular chemo are possible.

He started his first dose today. So far, so good.