Tuesday, November 30, 2010

The Scariest Moment!

Wayne and I met with Dr. Cozad today, who is my Radiologist. I start radiation on Monday, December 6, 2010. I got a little bit of bad news today, I was expecting to only do between 12-15 sessions but I found out I will have to do approximately 20. The side effects of radiation: I will have a sore throat. Mild to moderate sun burn on my chest. Food will taste badly again. Fatigue.

I then made my mask. I can hardly describe this experience.  Many of you might remember plastic canvas that was popular in the 80's as a arts and craft. The mask material was very similar to plastic canvas. It was a solid material that had tiny squares all over it. You could see/breathe through it. The edges where covered with trim and the trim had black knobs on it.

The nurse had me lay flat on a table and then she submerged this plastic canvas material in hot water. Once it was wet the canvas-like material was pliable. She immediately put it over my face, neck and chest and locked it down to the table with those black knobs. I could not even move my eyelids. As the plastic canvas-type thing cooled, it got hard creating a mold of my face. Wayne took lots of photos so I am posting them for you.



Photo 1: the before mask.
Photo 2: it has been locked down. You can literally see how tight that thing is across my face. (by the way: it left indents in my skin for hours after. On my forehead, nose, eyelids, and chin!!)
Photo 3: The after product.


The benefit of the mask; I do not have to have Cancer Markers (aka tattoo's). They will put me in the mask every time I go in and it will assure perfect positioning of my neck and make sure they are radiating the same spot each day.

Another important note: I have come down with a fever this evening. The last time I checked I was at 101.6. I called the oncall oncologist and he prescribed Levaquin for 7 days. I am 3 weeks out of chemo and still can not afford to get sick.

Thankful

I have attempted to write a post many times since last Wednesday. However, I found myself just too emotional all holiday weekend.

I have never had a more profound sense of gratitude as I do right now.

I am thankful for a wonderful family. Cancer does not effect the patient alone, it impacts the entire family. I am thankful to have my immediate family and extended family by my side.

I am thankful to have medical insurance and quality doctors.  This process has been stressful enough, I can not imagine adding the burden of figuring out how to pay for it. I am thankful for my medical staff. I have two great doctors and wonderful nurses who have cared for me.

I am so thankful for the multitude of friends who have supported me. So many people have emailed, or texted me or even called just to let me know they are thinking of me or reading the blog. Other friends have made us meals, offered to drive me to treatments. I have so many wonderful people watching out for me and I am so thankful for each of them.

Mostly right now I am thankful to be alive. I am thankful to being well on my way to becoming a Cancer Survivor!

Tuesday, November 23, 2010

The Next Step

So as happy as I am about being in remission, I still have to make plans for the next step: Radiation.

I have decided to do radiation in Liberty with Dr. Cozad. I called his office today and made an appointment for next Tuesday, the 30th. I will meet with him briefly and then spend time in the simulation room. There I will make my mask.  I believe Wayne is going to go with me so he can take photos!

I will then start radiation on December 6, 2010. My insurance is changing drasticallyy on January 1, so I wanted to be finished with radiation before the end of the year. So, by starting on December 6, I should finish the week of Christmas.

Monday, November 22, 2010

Test Results are IN!

Okay, today of all days Wayne and I sat in the lobby of the Doctor's office for 55 minutes before being called back.

The Doctor started off telling us that previously my lymph nodes were about 3-4 cm large. The latest CT scan showed they were 1 1/2 cm large. He is very pleased with how much they have shrank. He said they will continue to shrink over the next several weeks because there is still chemo in my system. BUT, he believes if he PET scanned my lymph nodes right now, they would be PET negative, meaning swollen but not with Cancer. He believes right now the lymph nodes are full of "trash" (dead cancer cells) that my body will continue to "clean out" in the next several weeks/month.

He did say there is a strong likelihood that my lymph nodes may never return to their pre-Cancerous size due to scar tissue.

He also said the MUGA test showed my heart is just as strong after chemo as it was before. So, I am going to survive Cancer and have a strong heart!

I still have to do Radiation. There is no getting out of that. Radiation should start within the next few weeks and last 2-3 weeks. But the Doctor said to me, I have finished the hardest part!

Thank you all for your support, your thoughts, your prayers! Thank you so much!!

Sunday, November 21, 2010

The Wait is ALMOST over...

Nothing too much new here. We are still waiting for test results. Doctor's appointment is at 9:00 tomorrow. I promise to post as soon as I get out of the doctors office and to a computer.

I will say....it has been a stressful week. You want to be positive and think positive thoughts but in the back of your head you are always thinking...there is a small possibility.

The other thought that has consumed my week is prevention. Self admitted I like to control aspects of my life. One of the most frustrating things to me this week is not knowing what caused me to have Cancer.  It is not like lung cancer that is directly tied to smoking.  And because I do not know what caused it, I honestly can't prevent it from ever coming back. Is it the soda I drank? Is it the food I ate? Is it the crop dusting I grew up with? or did some gene just go rouge and morphed into Cancer?

 I recognize that my obsession about prevention has to do with just how desperately I never want to go through chemotherapy ever again. It has been two weeks since I had my last chemo. I still find myself easily tired. My skin still itches a lot! And my bones still ache on a daily basis.

On a much lighter note, I do want you all to know that I enjoyed watching Bon Jovi sign on the American Music Awards. Along with two other rockin' songs, they also sang "It's My Life!"

Tomorrow, we have a few new answers....stay tuned.

Tuesday, November 16, 2010

Test: Done

Well, the test are done. I have no results to share. The process went smoothly today. The IV went in on the first try, they took my blood, added the radioactive material and then put my blood back in my body. Then I did the MUGA test.

I am not sure why but I was awake all night last night. I just could not sleep. I finally fell asleep around 5:45 this morning but just to be woken by the short chic around 7:30. So, when I was in the hospital getting the MUGA, I took a little cat nap. I actually woke myself up snoring!

After the MUGA, I went to a different unit and completed two CT scans. One of my chest and the other of my neck. The most nerve wracking thing, the tech's who run the test. One of them came up to me afterwards and started asking questions, "Do you have a lump in your throat right now, Did you have a lump in your throat, Where were the lumps?" I found it frustrating because I just want to know, did you see something? did you not see something? But of course, they won't tell you anything and they have to be read by someone else. My doctor will not even get the results till Thursday at the earliest.

I left the hospital feeling frustrated. This is now my life. Follow up test and waiting for the results. Fearing the worse.

Monday, November 15, 2010

On the Mend

Happy Monday morning everyone! I am back at work. I have not thrown up since Friday at 11:15 a.m. The only real concern I am having is bone pain as a result of those darn Neupogen shots.

So, I made a decision. I am not going to get my shot today. I figure if the pain meds have stopped working on my body then I should be finished with the shot. I laid in bed for the past two full days with intense bone pain and I am just not going to do it any more.

Tomorrow is a big day for us. I repeat the MUGA  and CT with contrast scan. The MUGA will tell the doctors if my heart was damaged by the chemo. That is a very real possibility so please keep saying prayers.  The CT scan will look at my neck and see how the cancer looks today vs. how it looked the first of July.

I have spent some time with my calendar today and just really freaked out that next week is Thanksgiving! We have not made any plans for the holiday at all. Time sure does seem to get by me more easily now.

Have a great day and I will keep you posted on the details of my test tomorrow.

Friday, November 12, 2010

Very Sick!

Let me start by saying that Purple Gatorade is easier to throw up than Orange Gatorade.

I have been sick for three days straight. I have thrown up so many times that I have lost count. Yesterday when I went to get my Neupogen shot, they doctors office kept me, gave me an IV and pumped fluids and anti-nausea medication into my body. It worked for maybe 3 hours. Then the vomiting returned.

I went back this morning and did another round of fluids and anti-nausea medication. This time they used a different drug and I am happy to say at the time of writing this post, I have not been sick since 11:15 this morning. I am hopeful that it is over.

I am thankful for my husband. He has taken very good care of me in the past three days. I am also thankful to my Mom, she packed up and drove here quickly to help out and is still here. I am also thankful for Meeghan, she has given me good advice and things to watch for.  I also know many of you have been saying prayers for me, and I am thankful for those.

So many of you have commented on my strength and outlook during this process. I want you to know that it is not always that strong. The past three days have tested me. I have a good friend whose sister has had Breast Cancer twice. I have thought about her a lot over the past three days. Right now, I honestly do not know if I was given a Cancer diagnosis again if I would ever consent to doing chemotherapy again. 

I know I am a low point emotionally as well as physically. And thankfully, I do not have to make that decision right now. I am hopeful that when my physical body stops hurting then my emotional state will improve.

Wednesday, November 10, 2010

Graduation Day

Today has been interesting. I went to work, facilitating a training. I managed to make it through the entire training before getting sick. I have forced myself to eat today just so I can have something in my stomach. The new Zofran is not working so well at keeping the nausea away. Can I tell you all a secret...just seeing the color red makes me sick.

Wayne met me at my doctors office today for the discharge from my pump. I said goodbye to my "ipod" with as much joy as I could muster today!

The cultures they took on Monday are still growing and the second preliminary report is that I have two bad germs growing right now. So, the doctor has decided to put me on a second antibiotic. So now I am on 1000 mg of Cipro as well as 2000 mg of Keflex a day. The other great news, they pulled my PICC line today. I no longer have two dangling lines from my arm! I can shower without regard to getting them wet!! I can finally scrap off all the tape marks that have been on my arms for months! And no more Heperin for me!!

I was under the impression that the PICC line was 39 inches long. I measured that out and almost freaked myself out by how long 39 inches was. I was pretty convinced I would feel the line being pulled out and it would hurt. I am pretty much a sissy-la-la when it comes to pain. So, you can imagine how surprised I was when the nurse announced the line was out and it was over. I was sure she was joking. But, no, right there on our pillow table was a PICC line and it was NOT 39 inches long. I am pretty sure it was suppose to be 39 centimeters and not inches.

The nurses in the doctors office are just amazing. After they pulled the PICC line, the nurse brought over a stuffed owl. The owl played music, the graduation pom and circumstance. In the middle of the treatment room with the other patients watching, I had a small, silly, and very moving graduation from chemotherapy party today. (I will post some photos when Wayne gets them sent to me).

My repeat test are next Tuesday. I have to report to the hospital at 11:00 for the MUGA and the CT scan.

So, while it seems like everything is going well, please pray that I get through this round of chemo. I am sick and the medication is not helping. I hope it goes away soon.

Tuesday, November 9, 2010

A Suprising End....

Good Afternoon blog readers!  Who thought the end of chemo would go out quietly? Well, you were wrong!

Mom and I made it to the doctors office by 8:00 for lab work. Then we met with the Doctor at 8:15 a.m. He says this is my last session of chemo. He also confirmed the little sores I have on my fingers, hands, arms and back are a side effect of chemotherapy. He ordered two follow-up test. The first is the MUGA, which will see if my heart has been damaged by one of the chemotherapy drugs. The second test is at CT-Scan. He said we would redo the PET scan after radiation but we would do a CT right now. If those two things are clear...then he will discharge me to the radiology.

After the Doctor's visit, we headed into the treatment room.  The first thing the nurses do in the treatment room is flush my PICC line with saline to make sure it is working. Then they start me off on the mix of steroids and anti-naseau medications. Well somewhere after the flush and during the first medication, I got cold. Then I really got cold. I asked Mom for a blanket, then another, and another. Mom had the insight to get a nurses attention quickly and they told me that cold chills were the result of a germ/bacteria that was probably in my PICC line and had gotten flushed throughout my entire body when they flushed the lines.

The end result, I had massive cold chills for nearly 45 minutes (think convulsions! My entire body was uncontrollable shaking. I was shaking so bad that my body ached!) They had to give me a large dose of Benadryl to stop the shaking, which put me to sleep.  When I woke up 2 hours later, I was no longer cold and was warm. My temperature then spiked to 101 degrees. The nurses asked me if I even wanted to continue with the chemo. Knowing it was my last one, I said yes. I slept off/on the entire treatment.

Afterwards, I just felt weak. Walking was a chore. They took blood and urine samples and sent them off to the lab. They prescribed with an antibiotic to start fighting any infection I have.

Tomorrow, I have to report back to the doctors office to get disconnected from the pump. I imagine they will go ahead and remove the PICC line from my arm tomorrow. Keep in mind, that PICC line is 39 inches in length. Can you imagine that being pulled out of my arm. Do me a favor, get a measuring tape out and look to see how long 39 inches is! I did, I am a little freaked out about the entire process.

Unfortunately for me, the Doctor wants me to stay on the Neupogen shots for another 8 days. Got to keep those white blood counts up!

Sunday, November 7, 2010

The end is here

Tomorrow is my last scheduled chemo session. We meet with the Doctor at 8:15 a.m. I would imagine we will get final instructions on the next steps.

Today is a day of preparation. Food needs to be purchased and prepared. Laundry needs to be done. House cleaned. My energy level is low. Not because I feel badly but because I know what awaits me and I am full of dread.

My random thought for today....you know how people who use meth get those sores all over them? Well, I have developed sores all over too. Several on my fingers, hands, even my back. I wonder if that is some weird side effect of chemo?

I just keep reminding myself that a year from now...this will be a distant memory.

Wednesday, November 3, 2010

Wednesday November 3, 2010

Why is it my non-chemo weeks fly by?  Then the chemo week creeps by so slowly.  I should be happy that Monday is my last scheduled treatment but I am full of dread.

The new pain meds continue to work well. Today I took them as prescribed. I have been sleepy but not to the point where I was unproductive. I worked a full day today. I facilitated a Medical Aspects training. It was good to see work people and to be in a training. I really miss my job! Hear me say this: I am so looking forward to having my life back!

I want to give a thank you to my coworkers in my office as well as the Southern Training Unit. They provided me with a gift card for food. Very thoughtful and I so appreciate it.

Tuesday, November 2, 2010

Exhausted!

I did not post yesterday. Mainly because I was asleep. When I went to the doctors yesterday to get my Neupogen shot, I told the staff about how much pain I had been in since Friday. They talked to the Doctor and he gave me a prescription for a new pain pill.

The new pain pill worked like it was suppose to. It took away all of my pain. But it left me feeling loopy! I was at work and literally had to ask my boss if I was making coherent sentences! As soon as I finished dinner last night, I went upstairs, got into bed, and fell asleep! I can not tell you when the last time I went to bed at 6:30 p.m. Maybe never!

I did  not take the medicine today and felt no pain until this evening.  Jacob had a vocal concert tonight and it took a lot for me to go out to the high school and sit through the concert.

Overall, the theme for me right now, is that I am tired.  Whether that is just little to no energy or medication induced. I am very tired right now.