Onward and Upward

With radiation complete - forever with any luck - I get to head back to just infusions. I did okay on the drug Herceptin, which I received during radiation therapy. Previously (over a year ago) I did not do so well on it, but because I did okay this time, we agreed to continue with it  - plus other supporter drugs, because those are so much fun! But none of them are chemotherapy, just receptor blockers.

On a totally awesome note, because I got to experience radiation I met the U of U Hospital with Huntsman Cancer Center in South Jordan - Daybreak. Now, when I don't need to see my oncologist, I do infusions there. 

It's a bonus in many ways:

• Shorter drive
• More relaxing drive
• Shorter wait time for pharmacy to send up drugs (like 30 minutes vs. 2 hours at Huntsman in Salt Lake)
• Happier and less stressed-out nurses
• Fewer other patients

Yep, it's a total bonus.

Out of all the treatments I've had the opportunity to experience, radiation was my least favorite. It and the surgery seem to have worked; however, as the last PET scan showed no cancer anywhere. We lovingly call the drugs I am on now the "keep cancer away drugs". It makes the infusions every three weeks a bit easier on my girls, who thought that after surgery I would be done with all cancer treatments. 

So onward and upward for us. Wishing you a happy Wednesday. 

Things I Needed to Know that No One Told Me

Things no one told me about radiation, but that I needed to know anyway:

1. Radiation affects your skin (I was informed of that). The health care professionals' solution is to keep the skin "hydrated and moisturized" by applying things like aquaphor and lubriderm early in treatment to prevent painful dryness, sores, cracks, and bleeding. No one mentioned that the best way to hydrate your skin is to hydrate your body. Drinking lots of water, especially with lemon or coconut water, hydrate the entire body. Including the skin. This has worked well for me thus far, and medical professionals were impressed with how well my skin looks.

2. Radiation destroys cells (this I also knew). I have felt very tired, and was especially short tempered the first week or so of radiation. I tended to notice it in my interactions with my children. Realizing this was not okay, I had an insight the other day. I was hungry. Very hungry. I was eating what I usually ate, but was still wanting another meal. Then it hit me: as the radiation destroyed cells, my body was working overtime to rebuild them. This takes energy and fuel, and I needed more fuel. So, after drinking my regular smoothie I ate a huge salad made of spinach, sauerkraut, tomatoes, cucumbers, hummus, and grilled chicken. After inhaling that I felt much better. I was also more patient with my children. As long as I eat twice as much as I normally would, I feel great and have the energy I was lacking earlier in the treatment process. 

3. Judgement has no place in cancer treatment. People come from all backgrounds and areas of life. The man who smells strongly of cigarette smoke who brings in his wife for radiation cares about her just as much as I care about my family members. Judging his visible behaviors that are directly linked to cancer is not my place. We are all on different journeys and are exactly where we need to be. 

4. Health care professionals have off days too. Overhearing patients swearing and complaining about what a nurse or other employee did or did not do hurts my heart. They are people too with feelings and are not perfect. I was told by a doctor the other day, "your day will be better than mine." I responded by saying, "you can still have a great day, it's all in what you choose." His response was, "at least you get to enjoy the sun." Cancer can be a bummer, but at times those who care for those with cancer get the but end of things. It doesn't cost anything to be kind, and at times come up with a creative origin story for a doctor's last name (yes I did this, I was waiting for a while and had to do something).

The Big To-Do about Radiation

Getting set up for radiation therapy consists of four main points:

1. Imaging

2. Positioning

3. Marking

4. Attending

First, imaging is done in the form of a CT scan. These images are used to set up the border and area to get radiated. The scanner bed has NERO padding on it- on a scale of 1-10 for comfort I give it a 2. Regular CT scanner beds have padding and are at a comfort level of 6. When asked why no padding I was informed that padding or cushions lead to shifting of the body, and for positioning purposes they need the patient's body as still as possible.

Which leads us to the second point, positioning. It's best when applying radiation to one's body that the person be in the same position, the EXACT same position every time. In order to accomplish this, a mold is made if the area that needs to be in the same position. I got to lay with my arms above my head, head tilted to the right, for 10 minutes while a blue bag with chemicals in it that were hardening cooled around me. I now have a form that will follow me wherever I go for radiation. I get to lay I it every time. I feel I have a new friend.

Marking goes along with positioning. Stickers were put on and lines were drawn on me prior to positioning, and after the positioning was finished photos were taken, more lines were drawn, and I received four dot tattoos. I was just sad that they were not cool colors like pink, green or yellow. The dark blue tattoos are small and may even fade out during the course of treatment. If that happens I get more tattoos! These tattoos are used to align my body with the numbers they punched into a cool machine. 

Which brings me to attending. Now, I get to attend the rest of the radiation therapy appointments. I guess this whole set up thing isn't much good if I don't show up for them. As a bonus they are short, with only a few minutes of radiation a day. 

Happy Saturday!

Bonus Adventures

I think I can drive up to the Huntsman Cancer Institute with my eyes closed (don't worry, I won't). My latest visit was very informative and adventurous! After meeting with my radiation oncologist (cool title!), I got a new drain put in. 

Backing up: the surgical drain that was put in during surgery came out last Friday because the fluid that was draining was sufficiently low. Around Sunday I noticed some fluid retention which increased daily and peaked on Wednesday. I called it a waterbed because that's how it acted. I pushed in one place and the fluid would move along in waves under my skin. Thursday my surgeon drained about 90 mL of goodness in the office, and the new drain is working well. The best part about this new drain adventure is that the first drain she put in did not work well, so she put in another one. Second time's the charm! Perhaps I'll get this new drain out next week, but we are being very conservative this time.

I also learned that radiation is a daily thing. After participating in chemotherapy with weeks in between infusions, doing something daily was a bit of a shock. Get this - five days a week (Monday through Friday) for six weeks. Yep. Sounds awesome. The bonus? I get to go to the Huntsman Cancer Clinic thing in Day Break for radiation, which is closer to home, and each appointment will only be about 30 minutes. So, really, it won't be bad at all. I can still even drive my girls to school, go get radiation, then come home with plenty of time to do PTA stuff and dishes before I go get them to bring them home. And still get chemotherapy every three weeks. Bring it on!

It's no secret that radiation causes cancer. My husband put it this way: you can die of breast cancer in a year, or do radiation and deal with thyroid cancer in 15 years. When I mentioned that to the radiation oncologist, she said she wished I could come talk to her other patients. That is the perspective she tries to bring with radiation. 

For better or worse, this is the course I feel impressed to follow. So, follow I will. But the best part? I don't start radiation until I get back from Hawaii. Mahalo!

Pathology

Post surgery checkups are cool for a couple of reasons:

1. I got to see the surgeon not in scrubs
2. Nurses were not trying to get me ready for surgery, but were just checking up on me
3. The surgery is over

Looking at the pathology report during a post surgery visit is cool because: 

1. I learned what a pathology report is
2. I saw the rationale behind some of the decisions medical professionals make
3. I got to read the resident doctor's report and the attending physician's report
4. The gross report means what things look like to the naked eye - is that why it's called gross?
5. Who comes up with these names? That's all I have to say about that. 

Based on the very detailed and specific pathology report, I am a great candidate for radiation. Good thing that pathology report was there to clear that up. 

Surgeon: You'll have a consultation with Dr. [Radiation] and go through a dry run where they set everything up how it will be for radiation.

Keith: Like a dress rehearsal?

Surgeon: Yeah.

Delores: Okay, I'll do it as long as the doctor dresses up for the play when I have the radiation. 

Keith: Yeah. Like cosplay?

Surgeon: (chuckling) Oh! Now I have a picture of that in my head. Everytime I picture her doing radiation I'm going to picture her all dressed up for a play. Ha! I've got to tell her! 

I figure that as long as the radiation doctor is willing to dress up to play her part, I can do mine as well. 

Post Surgery

Firsts for me:

1. I had my neck measured. Never had that done before. I was measured for the breathing tube.

2. I had a breathing tube put down my throat after I was asleep, and taken out prior to waking up, so I never felt it.

3. I have a drain sticking out of the side of my chest. The drain catches fluid from the surgical site. 

4. I have a on Q-pump also sticking out of my chest. The On Q- pump delivers a numbing drug - similar to novocaine you get at the dentist. This is numbing the place of the incision.

5. I had my nurse give a fake name incase we wanted to complain. She told us her real name, then said if we had any complaints then her name was Susan. (which was the charge nurse's name).

6. I got to wear ted hose. They were put onto my legs by first putting a small plastic bag over my feet to help them go on. Genious!

7. I got to speak with three different employees from the pharmacy. One an intern, the other two pharmacists. The intern had enough energy for everyone in the pharmacy.

6. Oh, and I got my breast removed. That was a first too!

How do I feel after getting it removed? Great! I feel that my body is more relaxed as it no longer has to fight the battle that was raging in my breast. Kind of how I felt after getting my rotten root canal pulled. Just a lot of relief that it's gone from my body.

Hurray for Firsts!

And a BIG THANK YOU to the sweet people who either came with flowers or sent them to me while I was up at Huntsman. I meant a lot to me that you would think of me. 

Port or No Port

After not having to have an IV for over two years, I had one a few months ago for a PET scan. It game me a new appreciation for my port. 

What is a port you ask? A medical port catheter is a lovely device made out of plastic. It is inserted under the skin (just under my collarbone), and has a tube that goes up into the vein at the base of my neck. At the base of the tube (the part that's just under my collarbone) is the round plastic part, about 1/2 inch in diameter. A special needle is put into the round plastic part of the port and not into a vein itself. This needle has tubing coming from to in order to draw blood or hook the port up to other tubing. Accessing the port is a sterile procedure, so that means sterile gloves, cleaning the area well, and masks for the nurse and the patient. 

Pros to having a Port:

• Once the port in inserted, IVs are no longer necessary.
• It is not painful to access the port. A brief moment of a sharp inhale, and it's over.
• The port can stay accessed to have blood drawn, tubes hooked up for medicine, hydration, etc. without any bumping or pain of the needle.
• Blood return is easy and fast
• Chemotherapies tend to damage veins, so finding a vein for an IV can be difficult and painful for those undergoing chemotherapy. The port alleviates this challenge.

Cons of having a Port:

• It is surgically inserted
• It has to be flushed every month, so if someone is not receiving regular blood draws or treatment, they need to get it flushed every four weeks.
• There is a bump sticking out of my chest
• For some people accessing the port is painful, so medical professionals can provide a numbing cream to apply an hour prior to accessing that alleviates the pain.

I was running late for a PET scan a few months ago, and accessing the port can take 20 minutes (15 minutes to wait for an available nurse and 5 to access the port), so I opted to just have an IV. The IV was placed into my arm at the crook of my elbow. That meant not bending or moving my arm for two hours. I could feel the needle in my vein the entire time, and my hand went off and on being numb. Plus, it hurt for about 45 minutes.

Thus, my new appreciation for a port. I forget it's accessed and just go about my regular movements. When it was first inserted I was skeptical, but I'm a believer now. 

So, hurrah for ports!

Newest Adventure

The more I learn, the more I think that none of us knows as much as we think we do.

For example: a certain person says this will help with x. I believe them. They believe themselves. It kind of works. Another person says that  this other thing will also help with x and even y! I believe them, they believe themselves. It kind of works too. 

My problem is that I like to learn new things, I like to try new things, and they totally work for me. So then I tend to trust in those things. But those things are not in charge. The doctors are not in charge. Dietitians are not in charge. Holistic health people are not in charge. Well-wishers and advice givers are not in charge. Books are not in charge.

I was reminded of this these past few weeks, and it was a welcome and needed reminder. Which brings me to the mastectomy that was scheduled today. The only other surgery I've had was a caesarean section three years ago. This will be another new and every exciting adventure. I was told that it is not as painful as other surgeries, so that's a bonus, but really? It is still surgery. 

There is only one reason I was able to schedule this operation. I participated in much prayer, fasting and pleading for direction that would allow the fulfillment of a certain blessing I was given two years ago - the blessing to live. This feels like the next step to allow the fulfillment of that blessing. 

I still need to keep up with my other stuff: meditation, eating raw and organic, exercise, adding lots of sprouts, thinking positive, serving others, drinking smoothies, etc. 

I'm excited about this newest adventure. I get to experience something new. And as long as the PET scan in the next few weeks shows that all the cancer is still localized to the breast, the surgery will proceed. The surgery was recommended because the cancer is nowhere else in my body. All the cancer in the liver and bones is gone. It is not in my lymph nodes. Left alone, the cancer is my breast can grow (as it is now, and has been) and cause pain, infection, bleeding, leaking, etc. So this local control can help eliminate that. 

I "trust in the Lord with all my heart, and lean not unto [my] own understanding. In all [my] ways [I] acknowledge him, and he shall direct [my] path."

Random Thoughts of Comfort

Some thoughts that have recently brought me comfort:

1. "...thus we see that the Lord worketh in many ways to the salvation of his people." Alma 24:27

2. "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and He shall direct thy paths." Proverbs 3:5-6

3. "...any assessment of where we stand in relation to [Christ] tells us that we do not stand at all! We kneel!" Elder Neal A. Maxwell

4. Thoughts beget actions. 

5. Obedience is not a matter of time or convience. It is a matter of faith. (paraphrased) Elder Henry B. Erying

Now go find some positive thoughts that bring you comfort!

Walls

I have been thinking a lot about walls lately: brick walls, stone walls, white picket fences, chain link fences with gate gates, etc. 

A long time ago I attended a support group where we discussed walls. Each of us there had a wall up around our heart in order to protect ourselves. We had all been hurt and as a defense mechanism we did what children do, we retreated and put up an emotional wall. It works, that's why it's done. 

I was then instructed that in order to heal the wall had to come down...which is a scary thought to one in the position I was in. It did not need to go away entirely, but the wall needed to be replaced with a fence. A fence provides a boundary that I am able to defend. A fence has a gate that I may open when I want to allow others in, or close to keep them out. A wall keeps everything and everyone away from me, including myself. I cannot truly come to know who I am with a wall up. I cannot truly come to know God with a wall up. I cannot truly learn to trust myself or others with a wall up. 

I have seen many types of walls. Most are tall, made of stone or brick, and are built to hide behind. Others are tall, stone, with barbed wire on top, and machine gun towers ready to blast anyone who comes within 25 feet of the wall. Those people tend to be a little bit more verbally aggressive and defensive. But it all stems from the same place. They were hurt and the wall was erected to protect. 

On one can take down another's wall. Love and support from others can help them in their efforts, but they have to do it. They put it up, only they can take it down, and only the Lord really knows how to lead them to do it. 

Over several years my wall came down. One brick at a time. It was work. It took effort. Lies that I believed as truth were exposed. I questioned many things and many ideas. And I came to know God. 

Believing that I am worth defending came only after much work.
Learning to trust myself came as the wall came down.
Trusting myself came after I trusted God, and took some steps of faith into the darkness.
Knowing that I have to do my own work, but that I don't have to do it alone, is empowering.

I am thankful for healthy boundaries. They help define relationships, establish friendships, maintain marriages, and support families. It took me many years, but I learned to have a fence instead of a wall. Yet, even now, I still have questions about some relationships, so I go slow, pray often, and trust in the Lord. He never lets me down.

Laughter

"It feels good to laugh," said the PA intern a couple of doctor visits ago.

I learned from that visit that my health care professionals usually do not laugh when they visit with their patients. "That's too bad," I thought. "There is so much humor in this whole cancer treatment thing. Let's make the most of it."

It was then that I had an insight. No everyone is like me. I know, pretty deep. 

Other things I learned at Huntsman:

• Taking Valentine's Day gifts to medical staff gets you TONS of smiles. I made many friends that day.
• Attempting flying side karate kicks in the waiting room does not happen very often, and when I did it, it got discussed by EVERYONE in the clinic.
• People appreciate it when you remember their names.
• When attempting set up an IV, and the patient's veins are not cooperating, nurses wrap the patients (especially their arms) in warm blankets to help the veins participate.
• If you tell your doctor that you are lightheaded, the PA may suggest you are dehydrated, then the doctor may suggest giving you fluid for an hour. So think twice about mentioning the lightheadedness.
• Many, many generous people donate free things to patients and Huntsman. 
• Everyone is struggling with something. So be kind.

Forks

Today I am thankful for forks.

All growing up, whenever my mother needed to get something untied she would ask us to, "get the pickle fork." A small, sharp fork used many times to save the day. I, however, never needed the fork. I had very strong fingernails that tackled shoelaces, string, and even opened boxes and ripped tape.

Now I use forks. As my fingernails break off, split, rip apart, and otherwise continue not to heal, I have a new appreciation for forks. The weakness in my fingers also loves forks. Forks save already ripped nails from further damage as they do the hard work to open knots and save yarn. Yea forks!

My toenails have recently joined the fray of splitting, and stubbed toes have turned into split open skin with major bruises. Awesome! I have never loved my feet as much as I do now!

All because of chemotherapy...bet you didn't know about these cool effects, did you?

Thank you for forks, and for shoes, and for awesome blessings I might not have appreciated if I didn't need them as much as I do now.

PET Scan Adventures

Coming from my fifth PET scan is a great thing. It is the only scan during which I felt sick. This shows improvement in something, though I'm not sure what just yet. 

The best part of my doctor visit yesterday was that I was helped by so many people with names beginning with the letter "B". The two MAs, both "B" names, my PA and her intern, both "B" names. Because of this, we renamed my doctor Bruce, and the nurse, Bob, so they fit in too.   

The PET scan indicated the the cancer lesions in my bones are healing and shrinking. There are no new tumors - always a plus. The tumor in my lymph node is gone, and the one in my breast is almost gone. All of the metabolic activity in the cancer cells has decreased - also a plus. 

The best part about Kadslya, besides that it works? For two days after I receive a treatment, I feel nauseous like I did when I was pregnant. That, "I'm not going to vomit, but I feel like I could and I'm light headed," feeling. Good times. Eating the right kind of foods helps to stave off the nausea, kind of like pregnancy. Maybe they are more related than I ever knew!

Night Thoughts

Sometimes I have a hard time sleeping. It is at these times that I tend to review my life. Last night as I reviewed scenes from my past, I noticed that most of them were not positive. They brought feelings of discomfort, anxiety, confusion, and regret. 

After I noticed this trend, I thought, "I don't want to feel this way." 

I then began stating positive truths: "I am important. I matter. What I want matters. I am strong. I am supported and loved. I flow with life. Peace of mind is mine. I take in and give out love equally." Along with others.

This activity rid my thoughts of the confusion, regret, anxiety and discomfort. I felt peace and began to drift into peaceful slumber. 

There was a time, several months ago, that stateing positive affirmations occurred multiple times daily. Lately, I have allowed other commitments to push out the positive thought patterns, and those negative ones like to come back in. Sneaky little guys!

I also noticed that when I don't exercise I don't sleep as well, and my thoughts tend to drift to the negative. Go exercise!!!

My positive affirmation for today: I lovely forgive and release everything in my past. I choose to feel my world with joy. I love and approve of myself.