Two Weeks Done!!

I think this pretty much covers the last two weeks. I apologize for not keeping the blog more current, but there is only so many minutes in a day and I chose to use them doing something else.

Mom started her third week of treatment last Friday, April 24th. These last two weeks some side effects have shown up. Her appetite is gone and food has begun to taste poorly. She says that even Diet Coke taste bad and that is absolute proof to me that radiation has affected her taste buds. She also was having a hard time sleeping because her mouth and throat have begun to hurt, the ethyol injection along with the chemo has made mom very nauseous, she has a severe lack of saliva and swallowing her medication has become difficult.

Now the solutions:

For the pain the doctor has given her something a little stronger in a liquid form that really helps her sleep. Except on Friday night when I woke up and she was in an absolute full panic attack. She was breathing very heavily and told me that her whole body hurts. When I asked her exactly where it hurt she looked at me funny and said "It hurts because I'm having a baby". Then she paused a moment and said "I hope I'm dreaming". It was a little funny, I assured her that she was in fact dreaming, we decreased the dose and she has slept well the last two nights.

For nausea the doctor has put her on three different meds. It took me a few days to get all the meds and the dosage instructions, but now they are taped to the front her medicine box if anyone taking care of her needs to give them to her. The meds unfortunately are very expensive (up to $150 a pill) however, Karen was able to get some samples of the most expensive medication from her oncology doc in Corvallis and the TCCC gave mom another 2 weeks worth, so that covers the rest of treatment for one of the meds. The meds seem to be working pretty well for nausea, but unfortunately can’t make food taste better or help increase her appetite.

Over last weekend she didn’t eat any solid food and drank hardly anything. I became enemy #1 when I fed her through the PEG tube after a day with her intake being only 400 calories. She met with Dr. Giever today and has lost 4lbs since last Monday so he has put her on tube feeding diet only since she isn’t able to get adequate nutrition. After radiation we met with the nutritionist and made a plan. She told mom to look at food in the same way as her medications in that they are necessary and need to follow a set schedule. This is because not meeting her nutritional needs will cause stoppages in treatment which will only prolong her discomfort. She gave us almost 2 cases (47 cans) of formula, more syringes and gauze 2x2’s. Mom will need 6-7 cans of formula a day and also plenty of water through the PEG tube if she is unable (unwilling) to drink water. She was prescribed Glucerna 1.5 which is specially designed for diabetics to help control blood sugar levels and is more concentrate than what is available over the counter which means fewer cans. Luckily Medicare and AARP will cover the cost of the formula completely and mom now has the lowest grocery bill since the time she was breastfed.

Today, Dr. Geiver noticed that the insides of mom’s cheeks are beginning to show the effects of radiation which explains why her mouth is uncomfortable. He told her to use salt water rinse/gargles to prevent thrush and to take her dentures out whenever she is at home. He told her she could wear them in public FOR NOW, but she can’t chew food with them and definitely shouldn’t sleep with them in. I noticed over the weekend while mom was napping on the couch that she sucks on them while she is sleeping. She looked as sweet as a tiny sleeping baby who makes the sucking motion even after the pacifier/bottle has fallen out of their mouth. All that sucking of her dentures will eventually cause sores which can lead to infection. This is the side effect that is most alarming for mom, but once we got home from radiation she took them out. I think she is trying to prolong the time that she can still wear them in public.

First Chemo Treatment

Today, Friday April 10th, was a very long day. We started at 7:30am at Kadlec for the medi-port placement. After a slight delay, missing orders from Dr Rado’s office, mom was taken to the cath lab. The nurses got her all ready then the doctor came to explain exactly what he would be doing and the reasons for putting it in. Along with the convenience factor it also will help protect her veins. When the chemo drugs are pushed through a vein they burn the walls of the vein and the vein is damaged to the point that it no longer useful. After several treatments there are fewer and fewer veins left and it can become very difficult to get an IV in. Also the arm which the IV is placed will be very sore for a couple of days. By using the port the chemo drugs travel through a plastic tube that protects the vein walls and drops the drugs directly into the heart where it is quickly diluted with no damage to the vein. I find modern medicine fascinating.

By 11:30am we were on our way to the Cancer Center for mom’s first chemo treatment. The infusion nurse was a little upset that they didn’t leave the port accessed, but I forgot to remind them with all the confusion about the missing doctor’s orders. It didn’t take long for her to get mom all hooked up, luckily there was still some numbness around the port since we came straight from the procedure. Usually it is very tender for a day or two and putting the line in tomorrow or even later today would’ve been painful. The nurse started with an hour of hydration, then an hour of the chemo drug, followed by another hour of hydration. The hydration before and after is to help flush it through her system and encourage her to use the bathroom. So anyone takes her to treatment in the future, be aware that she should be using the restroom often throughout the treatment. Although it sounds like chemo takes 3 hours it is really about 3 ½ - 4 hours, which includes putting the line in and taking it out again.

At around 3:30 we walked over to the radiation lab for that treatment. Again mom’s mask was quite snug. It leaves a fish scale like impression on her forehead that lasts about 20-30 minutes. She discussed with the tech making a new one, but decided to see how it fits next week. The mask was fitted to her not long after the surgery and she was on a restricted diet at the time so it is understandable why the mask may not fit the same now that she is back to normal eating habits. By 4:30pm we were finally on our way home, where Valerie and Dustin were there watching the girls and getting ready to cook us dinner.

Mom is feeling good, but a little unstable walking. She says she’s not tired, but looks a little pale and sleepy. She did say she was going to make it an early night.

Good News

Wednesday, March 8th mom met with Dr. Schwartz. He said that her throat is healing well and would like to monitor her every couple months for the next few years starting after the completion of treatment.

Today, March 9th mom met with Dr. Manaloto. She too noted how well mom’s throat is healing. She gave her some suggestions about staying healthy through treatment. These ideas include: avoid eating raw vegetable, adjusting diabetes medicine to prevent severe drops in blood sugar levels as eating become difficult, washing raw fruit very well and then peeling it and be sure to get plenty of sleep. She also had the results of the PET scan. It appears that the cancer has not spread; a copy (or link) will hopefully be attached to this post soon. As a side note the husband of mom’s friend was the radiologist who read the scan.

After a quick lunch at mom’s favorite Chinese Restaurant, before eating is too difficult, we headed over to the Cancer Center for the first radiation treatment. Michelle, mom’s infusion nurse, gave her the ethyol injection in her stomach and cleaned around the PEG tube. Michelle is great and a wealth of information. Unfortunately the chemo scheduling nurse did not have mom’s treatments and doctor appointments completely figured out yet, but should have a calendar ready for her tomorrow. We then walked over to the radiation lab. Mom got changed and waited to be called back while I worked on the puzzle in the public waiting room and talked to Karen on the phone. Before I knew it mom was done. Apart from the mask fitting a little snug again she said it was painless. I really wish it was going to be that easy every time.

PEG Tube Adjustment

Last night we had the fun adventure of checking out Lourdes Emergency Room. Mom was having some trouble with the PEG Tube (stomach feeding tube) and Dr. Carter told us to take her there where he would come by and look at it. After a few hours and miscommunication on behalf of the ER staff Dr Carter was finally paged and he was quickly there. He adjusted the tube, ordered her antibiotics as a precaution, a much needed pain medication injection and sent us home. By the time we got home she was feeling much better, mostly due to the pain medication. She had a quick snack and was off to bed.

Enough about doctors... How is Mom feeling?

On the down side: Mom is overwhelmed, wants to get the treatment started and the feeding tubes hurts! With all that she is also struggling with constipation-NO FUN! She is concerned with going out in public without her teeth. The doctors say that by week three of radiation, she will not able to wear her teeth until weeks after the end of the radiation treatment. She is also worried about losing her independence if she becomes too tired to drive herself to the temple with her gang, visit Bev at the nursing home or sneak out for diet coke and candy. The unknown is very difficult to deal with.

On the upside: Mom has recovered from the tonsil surgery extremely well. She is surprised that didn't hurt more. Glad to be off soft foods. She is grateful for having such a large family with so much support and love. Having the grandchildren around keeps her smiling and very entertained. She says "people think I am crazy for enjoying my grandchildren so much but I surely do." When I asked her what else I should write, she says she is doing okay and "I'm tough."

Having gone through cancer treatment myself I can relate to the fear and anxiety. I was lucky that my treatment of chemotherapy and radiation were at separate times. Combining them as Mom will adds a completely different level of complexity in order to coordinate schedules and maintain self-health during such a stressful time for both Mom and Mishawn's family.

To help mom's treatment schedule and to coordinate Mishawn's family schedules I have created an online calendar where you can sign up to do things such as:

• Accompany Mom to treatment - Tuesdays, Wednesdays, Thursday, and every other Friday
• Help with Abrielle as Mishawn goes to doctor appointments
• Pick up the girls from school and watch them when needed
• Bring in meals Mondays and Fridays
• Hang out with Mom while Mishawn and Jared work to maintain the day to day tasks
• Take mom for outings
• Host monthly family dinners (for our sibblings, to keep this going)
• see calendar for other ways to help

Go the link on the left side of this blog titled Carol's Treatment and how you can help. Or click here http://www.lotsahelpinghands.com/c/613179/ - please sign up as you can.

Chemotherapy Consult & Treatment Cordination

Monday, April 6th, 9:00am: Coordinating the Hematologist /Oncologist, Radiation and Nutrition

It was a long day of meeting with doctors for Mom, Mishawn and I (Karen) from 9:00am to 4:30pm coordinating both chemotherapy and radiation. As the doctor visits went on, it began to get more overwhelming and a bit confusing. Early on, Mom checked ouf the scheduling conversations and Mishawn and I took a lot of notes and clarified with each other often. Abrielle was the humor relief we needed and fish tanks are great!

Here are the cliff notes, we met with...

• Dr Rado the hematologist/oncologist
• Michelle the hematologist/oncology nurse who will be administering Ethyol shots, daily hydration drips and chemotherapy
• Tour of the chemotherapy facility
• Dr Giever the radiation oncologist
• Karen the radiation case manager to talk about radiation schedules
• Mom had a block test (her radiation mask fitted and radiation lines tested)
• back to Michelle in chemotherapy oncology to coordinate schedules between the shot, hydration, chemotherapy and radiation,
• back to Karen in radiation to confirm schedules
• Lunch at McDonalds
• then off to Option Care to meet with Carol dietician and talked about cancer nutrition and managing side effects
• Lastly with Sue the RN who showed us how to use the feeding tube
  
  Below is the current plan; remember it may change after the PET scan results come back.
  
  Dr Rado agreed that chemotherapy combined with radiation is the best treatment plan for Mom. There will also be daily shots of Ethyol and hydration (drip IV) before each radiation. Chemotherapy will be once a week (Fridays) and will take approximately three hours and a half hours. The chemotherapy will consist of a low dose of Cisplatin weekly for the same seven weeks of radiation.
  To know more about Cisplatin http://en.wikipedia.org/wiki/Cisplatin
  
  Blood laps will be drawn every Thursday during the hydration so that the doctors will have results on Fridays for Dr Rado and Mondays for Dr Giever.
  
  The radiation will be Monday-Friday for seven weeks at 1:30pm. It is the radiation that requires the daily shot of Ethyol a half hour before each treatment and at the hydration. Both the shot and hydration is done at the Tri-City Cancer Center in the Hematology side (Building B) then she will just go the radiation side (Building A).
  
  Mom will meet with Dr Giever on Mondays before radiation and Dr Rado every other Friday before chemotherapy.
  
  It was decided to have a portacath put in for the chemotherapy and daily hydration. Having one for during my breast cancer treatment I think Mom will like having this over being stuck daily with IV’s. To learn more about portacaths
  http://en.wikipedia.org/wiki/Port_(medical
  
  To learn more about Ethyol http://www.ethyol.com/
  ETHYOL® (amifostine) is a prescription drug given by injection prior to each postoperative radiation treatment session for head and neck cancer. ETHYOL is used to lower the rate of moderate to severe xerostomia (zee-roh-STOW-mee-uh) (dry mouth). It is used in patients receiving radiation therapy following surgery for head and neck cancer when the radiation area includes a large part of the parotid glands (the largest of the salivary glands).

Stomach Tube Placement

Today, Tuesday March 31st, Dr. Carter placed a feeding tube into mom’s stomach. The procedure took about 30-45 minutes and went as planned. She will need to keep the dressing on it until Thursday when she follows up with the doctor. This means no showering until Thursday which just thinking about it is making her crazy and she doesn’t get to see what the tube looks like until then also.

Dr. Carter said that she can eat as usual until the time comes that using the tube is necessary. At this time we call his office, he will prescribe the formula and schedule a home health nurse to come to her home to set everything up and show us how to use it. He said that he has had patients that have the tube placed and never use and other patients that once treatment gets going they are very grateful to have it, so I guess we will wait to see.

I have updated the calendar website so if you had problems in the past check it again because Rach has hopefully fixed it, but if not let me know.

Rachel has created a website that I can post mom's doctor schedule as an easy way to stay connected. Go to the following site, which I will update as often as I do my own personal calendar: http://sites.google.com/site/connectedwithcarol/

Please let me know if you have any problems and I will try to get someone to help me fix it.

Radiation Simulation

Today, Wednesday March 25th, mom went out to the Cancer Center for a simulation. It was a very quick and simple procedure. They found the headrest that was the most comfortable while still put her head at the correct angle, pulled her shoulders down using restraints, molded the mask (which I found fascinating), did a CT Scan and sent her on her way. The tour consisted of the dressing rooms and waiting rooms. This was not very exciting for Rachel and Leah who spent most of the time sitting in the waiting room, just to see two areas. We were all hoping to see the actual equipment, but it appears that only mom gets to see that. There is a DVD at mom's house for anyone to see which explains the treatment, equipment and facility.

Still waiting to schedule the PET Scan and Medical Oncology consultation.

Radiation Consult

Tuesday, March 24, 2009 Mom met with Dr Geiver, a Radiologist at the Tri-Cities Cancer Center. Below are the notes of the consult: First this type of cancer is not common - not unheard of, just not common.

After finding the mass, the first step was to see what type of mass we are dealing with. When Dr Swartz removed the tonsil and the mass, his goal was not to remove the cancer but the mass and find out what type of cancer. Now that they have identified the cancer as Squamous Cell Carcinoma and we know that not all the cancer was removed there are different ways to approach treatment.

The first step is to see where else the cancer is. A PET scan is used to identify cancer in the throat, neck, lungs and bones. After PET scan, they will be able to know fully how to proceed. Even if the PET scan does not find that the cancer is outside the throat region there are choices that need to be made.

1. Major operation to remove part of the jaw bone, neck and something else (sorry couldn’t keep up). This is a major and invasive operation and Dr Geiver did not recommend she go in this direction.
2. The second approach is 7-weeks of radiation Monday-Friday. There are many side effects from this (listed below). The objective of the radiation is to damage the DNA of the bad cells (cancer cells) so that they can not reproduce. In accomplishing this, other DNA cells are affected
3. The third approach is to have radiation and chemotherapy at the same time. The doctor suggested that Mom consult with an oncologist about this. There is a specific chemotherapy drug called Herbitux that has been found (in conjunction with radiation) to be effective to improve the result by 5-6% for Mom’s type of cancer. Short Term Side

Effects from the radiation:

1. Fatigue, she will feel run down and will need to rest more (the good news no nausea)
2. Sore throat and mouth. The doctor stated that if you think of the worse sore throat you’d ever had, this will be even worse. He said to consider the experience an “investment in misery” to get well.
3. Will loose all taste buds (temporarily) until approximately two to four weeks after treatment is finished. All food will taste like cardboard and tin foil
4. Dry mouth – the radiation will kill the glands that produce salvia
5. Sunburn like on the face and neck, which may blister
6. Hair loss in zoned patches on the back of the ear and head. It may come back in thin, different texture and/or color. Most likely her hair will come back thinner then now
7. Nutrition issues which are caused by all the mouth soreness and lack of taste. The options here are to make a diligent effort to eat even when it seems impossible or to have a stomach feeding tube inserted.
8. The gums will get very sore and receed. A few weeks into radiation she will stop using her dentures all together – just too painful. She will eventually, six months after the end of treatment need to be refitted for new dentures.

Long Term Side Effects from Radiation:

1. Neck will be thicker
2. Checks firmer
3. TMJ issues – jaw will be stiffer and may continue to be sore and not go away. She will need to work throughout radiation treatment to keep her jaw opening and closing as wide as possible
4. Internal sores that may not heal. Not as common but may result
5. Continued dry mouth. There are pills to help with this, but it will not return to normal.
6. May be some scaring in the in the lungs.
   

Options that required discussions (other then to do radiation)

1. If she wants to have the feeding tube or tough it out. The doctor’s recommendation is to have the feeding tube. There is less chance of being admitted in the emergency room for dehydration and nutrition issues. Monitoring her nutrition and weight as closely will not be necessary. However she will still need to actively swallow 2-3 times daily, which will be challenging.
2. If she wants to take the drug that helps maintain the salvia glands. However there are side effects from this drug. They include dizziness, allergies, and rashes. The drug takes 1.5 hours to administer (by shot) and will add an hour and a half to the daily regimen. It can be started and if the side effects become present, she can stop it. The drug is done by the oncologist that will do the chemotherapy so it could be one stop shopping for her.
   
   
   Mom asked if she will be able to continue to drive. The doctor said that she must monitor herself and know when she is not safe to drive. If her neck becomes too sore for her head to have full range of motion making it hard to look over her shoulder and if her fatigue is to a point that it will affect her reaction time.
   
   Over all her prognosis is very good and he feels that she can over come the cancer. It will be a very uncomfortable seven weeks and he reminded her that it will be an investment in misery.

Surgery to Remove the Mass

On Friday, March 13th Dr Schwartz performed surgery at Kadlec Medical Center and removed the left tonsil and the mass. The surgery took approximately 45-minutes and after an additional hour in recovery Mom was moved to the critical decision unit where she spent the night.

Following the surgery Dr Schwartz felt the mass would be cancer and thought it would be lymphoma. The mass was sent out to be biopsied and the results taking 3-4 days.

Mom did well overnight and was released from the hospital by noon. She was happily sleeping in her own bed. Mom did not like eating soft foods but she recovered very well just took a lot more naps then usual and to bed earlier at night.

Meeting with Dr Schwartz on Thursday, March 19th, he informed Mom that he was wrong and in fact she has squamous cell carcinoma. The mass was 4.5 cm and the margins were not clear. Meaning the surgery did not remove all the cancer. Mom was referred to the Tri-Cities Cancer Center for radiation.

Finding the Mass

Tuesday, February 10, 2009, Mom went in for her routine colonoscopy and endoscopy. Her endoscopy was first followed by the colonoscopy. During the colonoscopy, Dr Carter found that her stomach had blood in it. After draining the blood it returned. He admitted Mom in the hospital for observation and called Dr Schwartz (ear, nose and throat specialist) for a consult. They monitored her blood count and found that there was a mass on her left tonsil.

After being released the next day, Mom saw Dr Schwartz on February 13th. Dr Schwartz suspected cancer and recommended that the mass be removed. She was scheduled to the mass removed on February 27th however at the admitting appointment; the anesthesiologist wanted her to undergo a cardiology consult.

On Monday, March 2nd and Friday March 4th Mom did the resting and stress echocardiogram. On March 5th Mom underwent Dr Racsa cleared her for surgery. Dr Schwartz scheduled the tonsil and mass removal as the first surgery on Friday, March 13th.