I Love Nurse Practitioners!

I LOVE nurse practitioners!

I know I am predjudiced because I am a nurse practitioner, but I really LOVE nurse practitioners! I even changed my own primary provider to a nurse practitioner because I have gotten such great care over the years from nurse practitioners.

Yesterday, Fred went for his postoperative check-up at OHSU with Dr. A. He was seen by Dr. A, who said he was doing just fine, healing with just little bit of open, bleeding area noted in his throat. The tumor is growing back, as I suspected, since Fred is choking when he eats again.

In addition to seeing Dr. A, Fred was also seen by the nurse practitioner who works with Dr. A. She spent about 45 minutes with Fred explaining all the things that have happened, as well as explaining what is coming. She really emphasized the importance of swallowing, even when his throat is hurting. If he doesn't swallow, he will really have a hard time learning how to swallow again. She gave him a number of exercises to begin now so that he is ready when he needs them.

I think it was good that I wasn't there for this appointment because Fred got the explanations that he needed. Without a nurse in the room, I think the providers were not worried about "talking down" or something. Maybe they gave more information because they didn't make the assumption that we already knew all this information? I don't know exactly what it was, but he got more information yesterday than he had in the past. And, it seemed like he was in a better mood after this appointment than he had been in the past. Previously, he left the doctor's office really down and hardly talked. Last night, he was really talkative and positive.

I heartily thank that nurse practitioner for spending the time Fred needed. She is going to see him about every month or so, throughout the treatment and then post-treatment. She and Dr. A will follow Fred closely for the next five years, which is the time frame that is most risky for a re-occurrence.

I LOVE nurse practitioners!

K

A New Med to Deal With

Fred and I just went to the medical oncologist - Dr. MS - and she is adding a second chemotherapeutic medication to the regimen. Paclitaxel (Taxol®) wil be given on a weekly basis along with the Cisplatin in order to enhance the effect of the radiation. Taxol is usually used for ovarian cancer, but it being used for many other cancer therapies as well.

It is really pretty neat that Fred is going to be getting Taxol because our son, Jon, has worked with one of the major researchers working on Taxol. The research he worked on centered around finding other sources for Taxol besides the Pacific Yew tree.

I am really glad that Fred has the portacath now that his chemo is going to be weekly instead of only three times during his radiation. Good to listen to your intuition!

This is the best day Fred has had since his diagnosis! He is managing his pain well and the side effects and post-op complications have been reduced to a reasonable minimum. He only chokes once or twice a meal, as long as the food is soft and well-chewed. Last night, he actually got out the screwdriver and put up the new toilet paper holder I bought for the guest bathroom. I almost cried when he called me to the bathroom to see how it looked...and it looked great!

Chemoradiation will probably start next week, so we have about a week to enjoy his improved health before things start to change due to the radiation and chemo effects. I am feeling more hopeful and positive. It has been exactly one month today since his diagnosis. All of this has happened in only 30 days! It is unbelievable that just 31 days ago, we didn't even know this was ahead of us. But, I think we're going to make it.

K

A Virtual Fred

Dec. 1

Today we spent the day at the oncologist’s office having at PET scan and a CT scan in order to have the radiation plan developed. Based on these tests, a virtual Fred will be made. This was done earlier, but the surgery changed the tissues and so it had to be redone.

It will take about two weeks to complete all the computer work and planning. Dr. SS's nurse, Sandy, will call us to schedule the first radiation appointment, probably next week sometime. Fred will have the first dose of chemo on the same day as his first radiation appointment, so that will be a very long day for us.

Because of Fred's weight loss, we are going to start PEG feedings already. We will be using Jevity 1.5 formula. He needs 2200 calories to maintain his weight, so with the increased needs of the cancer metabolism, he needs an additional 500 calories for a total of 2700 calories, just to maintain. That is 6-7 cans per day. We are going to start that tomorrow. Radiation will require more calories as well.

I put Fred on Senokot-S plus DOSS to help with the constipation, so I am hoping the formula won't kick up too much fuss with his bowels again. Time will tell.

Across the street from the oncologist’s is a frozen custard store. Fred and I stopped there after the appointment and he ate custard! He is looking better today that he has since the surgery. Before the surgery cold things felt good on this throat. After the surgery, cool hurt and warm things felt better. Today was the first time he has enjoyed cold!

I love him so much!

K

Post-Operative Complications

Nov. 24 -30

Fred has had to deal with a myriad of problems post-operatively. He has pain in his throat, chest, and abdomen. He has wounds to deal with. He has two huge areas where blistering has taken place – wherever tape touched him. He had urinary retention. He got a PEG tube site infection. He also got a bowel impaction from the narcotics. Once we got the impaction reduced, he stopped taking narcotics because he was afraid it would happen again, so the pain increased again and he stopped eating. He has lost 10 pounds in one week. I won’t go into tremendous detail with these, just know that all week we have been trying to deal with these problems. It was good that I was a nurse! I don’t know how people do this without the additional knowledge!

The doctors told us that it was a good idea to have the PEG tube and port placed early like we did. Fred had so many complications and he was initially healthy. If he had been debilitated after chemo and radiation, it could have been extremely serious for him. I had a feeling that he should have them placed and now I am glad I pushed for it. At first I thought I was over-reacting, or thinking too much like a nurse instead of a wife, but now I am really glad. I need to remember this lesson and keep my intuition finely tuned. I know there will be more situations like this in the future.

I still can’t believe he has cancer. Being so busy taking care of him doesn’t allow me time to think about it and I am glad for that. I still think denial is a good thing.

K

A Surprise Surgery

Nov. 21

Shockingly, Fred ended up having surgery today. Dr. A called us last night to tell us he needed to do a biopsy under anesthesia and to reduce the bulk of the tumor. Fred went in at 12:30 and came out at 6:00 pm and ended up admitted to the hospital unexpectedly.

During surgery, Dr. A did two frozen sections of the tumor that came back non-diagnostic. He told me that he knew there was something wrong with Fred and so he didn’t believe the biopsy results. He decided to take a large chunk of the tumor (which by today was so large it was occluding his airway and causing him to choke and aspirate). I freaked out when I looked in Fred’s mouth and actually saw it. During all our visits to all the doctors, I could never see the tumor, but it has grown so fast that it is huge now and very obvious to see. When Dr. A took out the mass; he described it as an enormous “peanut M&M” with normal tissue surrounding the cancer cells. When the mass was sent for frozen section it was positive for squamous cell carcinoma.

We asked Dr. A to place the PEG tube and a port while Fred was under anesthesia so that he only had to have one exposure to anesthetic. I was thankful that he did that for us, but when Fred woke up, he had a sore throat, a sore chest and a sore abdomen.

The first post-operative problem we encountered was Fred’s inability to urinate. A catheterization in the OR combined with anesthetic and narcotics caused urinary retention. With lots of patience and time, he finally voided, but it was very painful.

The next problem was the pain at the PEG tube site. He complained of that from the first time I saw him post-op. Finally, the night nurse decided to check the wound and started taking off the tape. Fred immediately gave a huge sigh of relief. When the tape came off, so did his blistered skin. Wherever the tape was, he blistered. So he had blisters around the new PEG tube and where his port was placed.

The next problem was pain relief. One of the nurses decided to give him oral pain pills. His new PEG tube was open to gravity drainage, and out went the medication into the bag – thus no relief. We convinced her to give him IV meds and oral meds at the same time, and then to clamp the bag for at least an hour after giving the oral meds. This finally brought him some relief and he got a few snippets of sleep.

I stayed with Fred the entire time. There is NO WAY I was going to let him be unattended in today’s healthcare system! I still can’t believe he has cancer. Denial is the only way I am getting through this. Melissa stayed with me through it all, bless her heart! I couldn’t have made it without her! Jon called me about every hour and I tried to keep him up-to-date. I know he would have been here if he could have been. I have the best kids in the world!

K

A visit to the Dentist

Nov. 20

Fred went to see our family dentist today to have his teeth checked. There was one molar that could be a problem, so out it came! Poor Fred, not only does he have cancer, he had to have a tooth pulled. If he had a problem with a tooth in the middle of radiation, it changes the virtual model and where the radiation is going, potentially causing the radiation to miss the tumor – not something that we want!

I still cannot believe this is happening to us. Denial is a good thing.

K

A Day at the Oncologists

Nov 19

Only two weeks after having found out that Fred had cancer, we met with our new radiation oncologist and our new medical oncologist (who prescribes the chemotherapy). Dr. SS is really impressive. He went over all the details about the radiation therapy that Fred will need to have. There is a nurse, Sandy, who works there and is also very impressive. I feel like we are in good hands with their team.

Fred will be having Intensity-Modulated Radiation Therapy (IMRT). This type of treatment takes images from a CT scan and a PET scan and creates a virtual model of Fred. Then the radiation oncologist determines how much radiation goes to each part of Fred’s head and neck. This helps to preserve structures that are critical (brain, spinal cord), and those that are important (epiglottis, vocal cords, parotid gland) at the same time providing maximum cell death to the malignant cells. The pic at right is an example of what a simulated patient looks like. The purple areas are the areas that ret the most radiation. Fred will have one of these done as well.

There are going to be many side effects, some of which we knew about, and some of which were a surprise. One problem that is fairly easy thing to deal with is the fact that he will be in a mask during the radiation treatments. The pic at right is an example of such a mask. Each mask is fitted to the patient and is used only for him/her. The mask will keep Fred immobilized during radiation and also to make sure the he is in the exact same position for each treatment. Once he is immobilized for the treatment, the linear accelerator will beam radiation most intensely to the tumor and lymph nodes, and little less intensely to the next most likely structures involved (other lymph nodes), and the least intensely to all the other areas between Fred’s ears and armpits. Having that mask on during the 30 to 40 minute treatment can cause claustrophobia, and I am anticipating that he will need some medication to reduce his anxiety. One of the good things about the mask is that he won't have to have the radiation marks on his face or neck like used to be done in the past.

Another of the easy things to deal with is the fact that Fred will lose his hair in the area that is radiated. He’ll have a funny hairline on his neck that will be about ear level. He’ll also lose his beard. The beard on the left side of his face may never grow back because that is where the tumor is and where the radiation will be the highest. Fred has already decided to shave his head if he loses his hair! He is worried about his beard, though. I am just glad that I love the way he looks with a goatee!

Fred’s skin will be affected early on. Dr. SS told us that radiation therapy is like getting a major sunburn every day for 35 days. By the end of the treatments, Fred’s skin will be burned from ears to armpits. He will develop blisters and weeping. We can handle that with hydrocortisone cream and aloe vera cream, but his skin will be painful nevertheless. The pic at right is an example of a radiation burn.

A very bad thing to deal with is the pain of the throat. Since the cells of the mouth and throat have a rapid pattern of replacement, they are often easily affected by radiation, making the mouth and throat very sore and painful. This leads to difficulty eating and swallowing, thus requiring a PEG tube for feedings and fluids. Narcotics are often used to decrease the pain because it is essential to continue swallowing, despite the pain. If patients stop swallowing, it can cause atrophy of the muscles and cause the patient to actually have to learn how to swallow and eat again!

Another really bad thing is that the major salivary glands are often affected. Dr. SS told us that Fred will probably lose his left parotid gland because it is directly in line with his tumor. His right parotid gland will also be affected during the radiation treatments causing a change in his oral moisture. This can cause the saliva to be reduced, too much, or different (thick and stringy, profuse and watery). There are medications that can be used, but mainly the patient just has to live with it. Fred will probably have less saliva permanently because of the loss of the left parotid gland.

Teeth can be permanently affected by the loss of saliva. Saliva reduces the bacteria in the mouth and so the lack can cause dental caries and cavities. Fred will have to see the dentist and have any dental work done prior to beginning radiation. He’ll also need to sleep with fluoride trays to keep his teeth healthy.

One of the saddest effects is the loss of taste. Dr. SS told us that Fred will definitely lose his sense of taste during radiation and it may be permanent. That will really change the quality of our lives since we love to go out to eat and it is hard to do so when you food doesn’t taste or doesn’t taste right. That makes me very sad.

After meeting with Dr. S, we then went over to the medical oncology side and met Dr. MS. She is also very impressive and carefully described what chemo to expect. She told us that he would be getting Cisplatin, which is an old chemo agent that I gave many years ago when I worked at LA County-USC Medical Center. She is going to use the highest dose possible for Fred. Of course, this has side effects as well.

One of the minor ones is that it can cause damage to the vein, so she likes patients to have an implanted port. The pic at right is an example of a port. That allows the chemo to be given without the potential damage. It also allows fluids, medications, and blood draws to be done without any additional needle sticks, an important fact to reduce pain and also to reduce the potential for infection.

Infection is a big threat because the Cisplatin kills all rapidly dividing cells, including the cells of the bone marrow. This leads to a lack of white blood cells, the cells that fight infection. Dr. MS will carefully watch Fred’s blood levels to make sure his cells are adequate before another dose of chemo is given.

One last problem is that Cisplatin can cause kidney damage. To reduce that impact, lots of intravenous fluids will be given to hydrate the kidney before and after the dose of Cisplatin is given. The port will help with the fluids as well. The pic at right is an example of what the port looks like when it is being accessed for use. When it is not used, it is under the skin and all you can feel is a bump.

By the end of this extremely long day of doctor’s visits, we were exhausted and drove home in a mental and physical fog. I can’t believe we have cancer in our lives. It is just not possible.

K

A Visit to Pill Hill

Nov. 11, 2008

Fred and I went to OHSU to meet our new ENT specialist, who after checking Fred’s throat with a scope again (the tumor was still not visible through Fred’s mouth), told us that Fred probably had squamous cell carcinoma of the left palatine tonsil. At this point, he began to explain what this diagnosis meant. Treatment of oral, head and neck cancer is probably the most difficult of all cancer treatments. It is treated primarily through radiation, but chemotherapy is usually added when lymph nodes are involved. A CT scan showed three lymph nodes on the left and one on the right that are probably involved. The radiation leaves the patient unable to eat due to the destruction of the mucosa of the mouth and esophagus. This requires a tube to be placed directly into the stomach for feedings and medications since the patient would not be able to swallow. The chemotherapy requires venous access, and so a permanent port is usually placed into a large vein for blood draws and chemo. There is no English word to describe our feelings about this information.

While we were in the office, the doctor obtained a small amount of tissue for a biopsy. This left Fred’s throat even sorer. And so we left OHSU stunned.

Election Day Changes Our Lives

Nov. 4, 2008

Election Day, November 4, 2008, changed our lives. My beloved husband, Fred, began complaining of a sore throat in June 2008. Because he had severe allergies to grass and last summer was a particularly bad year for grass allergies, we consulted our allergist about this complaint. She thought he had post-nasal drip and prescribed a course of steroids, which Fred took religiously. No improvement. Thinking that the allergies were not the problem, he tried to get into his regular provider, but couldn’t get an appointment for over a month. By this time, it is September, and a visit to the PA (only option for an appointment) provided a course of antibiotics. No improvement. Now I am getting scared. Finally, Fred got into his regular internist, and after some gentle prodding, the doc got a mirror and found something in Fred’s throat. This was October 30th. I was really scared already, but getting an appointment with an ENT doc within 2 working days really sent my blood pressure soaring.

On the morning of the 4th, we went to the ENT doc, who looked down Fred’s throat with a scope and told us he had a tumor. With both of our professional backgrounds, Fred and I knew this was not good. We pushed to go to OHSU for a specialist consult.