It's My Life

So Friday when I was at the dye study the lab tech changed my dressing on the catheter site. She used a non-latex adhesive called a  Tegaderm Film .  By the time we made it home from the football game, I could not stop scratching my chest area. I also had developed a sore, painful left arm that I could barely move. I know I am suppose to leave the catheter area covered at all times but the scratching and burning that came from that was so intense, I had to take it off.  All day yesterday it was still itchy. Late yesterday afternoon Meeghan came over and we noticed that I had actualy blisters on my chest. The whole area was red and covered in welts. I actually ended up going over to Jean Kantola's home and she nursed me. She cleaned the area with alcohol and then put a skin barrier over the area. Then she put on a bandage. Not knowing if it was the hospital Tegaderm Film or the latex tubing of the catheter that was causing the irritation, she taped the tubing...

I woke up this morning feeling normal again. Nausea was gone and once again I had energy. Food still did not taste good this morning, but by lunch time I ate a normal size meal and it tasted pretty darned good.  Many times today I have thought if this is how this is going to go, I can do this.  Monday I felt good, Tuesday half a day I did not feel good. I was down right out of it Wednesday and Thursday. But today, I almost felt like I was not ill at all. We even got out of the house and enjoyed a high school football game tonight. The dye study was today. I actually got to see a "live" photo of the catheter tubing in my chest. There is a whole lot of tubing in there! The dye showed the catheter is working but they still can not get a draw on the one tube. At first the Radiologist thought it might be a defect in the tubing but when he looked at it closer, he does think maybe there is a sheath blocking it. As far as what they are going to do about it (since the sheath has...

Just a few updates. We met with the Radiologist yesterday to develop a game plan. It looks like there is brand new research out on the treatment of Hodgkins patients and I might be benefiting from it. Instead of three weeks of radiology, I might only have to do two. Radiology will start one month after Chemo ends, so we are anticipating the end of the year. After meeting with the Radiologist, we headed back to the Oncologist to disconnect the pump. My boss had told me that a nurse in the treatment room was one of the nicest people she has encountered and I got to meet her yesterday. She was very kind. I have to actually say, everyone at that office has been unbelievably kind and caring. I have not felt well for the past two days. I have been taking the anti-nausea medication but do not know if this dose is good for me.  One thing I can say about that medicine for sure; I have become reacquainted with my bed today. I do not believe I have been awake for more than 2 hours today.

It is the close of Day 2. Not going to lie to you all, it has been a rough day. After being awake all night, I finally fell asleep around 6:00 a.m. and Wayne woke me up at 7:00 a.m. I did manage to go to work and facilitated a training this morning.  It all went downhill fast when I got to work. I am not sure what the trigger was, it could have just been breathing, but I got super nauseated. I also believe I was running a fever, my face was red and hot.  I only made it a half day. I came home, took my anti-nausea medication and finally slept for 3 hours.  When I woke up I felt much better. I was expecting to get two good days following the starting of the chemo. I guess I only got one. Overall, I feel zapped, like I have no energry. I am worried. If I feel this poorly after only one day, how in the hell am I going to feel tomorrow. Taking a bath with the catheter in is a nightmare in itself, but bathing while connected to the pump is even worse. Who wou...

It is 3:30 a.m. and I am obviously awake. Besides the fact that is hard to sleep with this pump attached to my chest, I believe my being awake is a side effect of the steriods they gave me earlier today. I guess as far as side effects I could be having this one is not painful or ugly. Some would even appreciate the alone time. I have almost finished another book. I have spent some time catching up on my DVR. But as I am awake, all I can think about is I have to work tomorrow. I have a training that I need to be at by 8:15 and I am awake and have only slept for 3 hours. Can this be done? Can someone have cancer, do chemo, and work? I really thought so. I really hope so. But as I sit here at 4 in the morning, things do not seem so possible. I am sure this sleepless night is nothing compared to the side effects that are coming my way. I am so not use to not doing everything I want. It is not easy for me to admit to limitations. Don't worry yet my friends. I am sure this post is ...

Well it is not slammin red but it is RED. Check out my new chemo bag. The doc said it would be slightly larger than an IPOD. He was wrong.

So I am sitting in a private room inside the oncologist office surrounded by my Mom and my Momma Liz. We are in the process of having the chemo drugs administered. So far I am tolerating them well. The first thing we did this morning was meet with the Doctor. The good news is that I am only a stage 1A. The best diagnosis to have is Stage 1A. With the good news I may only have to do 3 rounds of chemo and not 4. Other good news,  I will not need a MUGA in between each round of Chemo. If there has been a complication so far, it has been the fancy catheter they put in my chest on Friday. The nurses should be able to administer medication and take blood from both lines of the catheter. However, only 1 side is working. The nurse believes I may have a sheath developed. They have given me some medication to break that up but so far it has not. If they can't get it to work, then they will declare it broken. The administration of the medications is not exactly what I thought it would b...

If you are as new to blogs as I am, let me help you figure this one out. The cool thing about a blog is it allows you and I to comment about post made. In order to do that you have to sign in. There is a button in the top right corner that says SIGN IN. If you have a twitter, gmail, or yahoo email address this is the easiest thing in the world (come on, my momma did it)! You just log in with those user name and passwords. Once you have logged in, you can follow the blog. Even if you sign up to follow the blog, you can not leave a comment unless you are signed in. I just want to say thanks for following my blog. I know a lot of you are reading it and providing me with lots of encouragement. I really need it and appreciate it!

Tomorrow I start Chemotherapy. As many of you know, Chemotherapy is a group of medications that are like poison. They will kill my unhealthy cells. BUT, as Chemo does not know the difference between unhealthy and healthy cells, it will kill all fast growing cells.  The Doctor told me to think of the body and all the things that grow quickly on it. (Hair, my imune system, mucas membranes, and the inside of my mouth will all be impacted). And it will make me sick. Isn't it sad that in order to get better, I must get sick. Today I am anxious.  I am tearful. I am full of dread. I am even scared. This is one time in my life I would like to flip to the last chapter of this book and read it. I am spending the day with my family. The boy comes home later tonight. I plan to have a quiet day because tomorrowI start Chemotherapy.

Given the fact that very soon I may not have hair on my head, I am considering dying my hair a shade of red. I have always wondered what I would look like with red hair. So, here is my question to you, If you were going to lose your hair to chemotherapy in the very near future, What would you do?

Days until Chemo Starts: 2 Wayne and I had to report to North Kansas City Hospital at 6:00 a.m. for my last preparation step: getting the catheter.  Besides thinking we were to report to the Pavilion when really we were suppose to be in the Hospital, everything went really well. When Jackie was here she gave me a few tips on how to deal with the Nurses who put in my IV. I have really bad veins; getting an IV in is sometimes very difficult. I always tell the Nurses but I am sure they hear this from many patients and they just really never listen. So, the good news, using Jackie's tips today's IV went in on the very first attempt and involved no pain!! Today's surgery went well. I have a tiny incision on my chest just below my collar bone. Small enough to only need 2 stitches. My chest hurts. I have been icing it all day. After surgery they took a chest x-ray to see if everything was in its proper place. There was a small concern because the catheter is not as deep as ...

Me, waiting in the lab room. I had to get an IV and then I was injected with radioactive material. Nick, the tech, is standing in the office room. The door leads to the CT/PET scanner. The Mobile PET Scanner. It really is a semitruck. There are stairs on the side and those take you right into the "office" room. The steps were very very steep!

Days till Chemo starts: 5 Number of Needle Sticks in the past 2 days: 6 Number of Failed IV's: 2 Doses of radioactive material injected into my body: 2 Yesterday I got a phone call saying that the scheduling guru's made a mistake by scheduling me for a 6:15 a.m. PET scan because they did not even open till 7:00. Thankful for the extra sleep, I said GREAT! Jackie and I were up, showered and out of the house by 6:30 (well I might be fudging that time just a bit!). We got to our checkin place at 7:04 and then we were directed out to the parking lot. I guess a PET scan is so expensive no hospital in the area can afford their own. So they all pitched in and purchased a moveable scan that is housed in the back of a semi truck. (I promise photos later!) This semi truck has 3 rooms in its cargo area; an office, the scan room, and a lab room. As soon as we get in the lab room, Nick, the Tech, says I was 45 minutes late. I told him about the phone call the day before. He told me ...

What a day this has turned out to be! Jacob started the 8th grade this morning.  So even though I was NPO (nothing by mouth) after midnight, I got up at 6:15 a.m. and made breakfast for him. Torture to the self is good smelling coffee, wonderful coffee creamer, awesome breakfast burritos, and yummy fruit smoothies and not being able to eat any of it! Mom left home around 5:30 and arrived before 7:00. Mom, Jackie and I got to North Kansas City Hospital at 8:30 a.m. I had three procedures today. Procedure 1: Lab Work. Pain Level: 0, Days tunil Chemo: 6   It is always nice to start off on a good foot. Most of the blood test were your standard test: CBC, WBC (white blood  cell count), HCT (red blood cell count), PTT (Prothrombin Time). The fourth test was a Beta Globuline (which I belive is testing for Iron in the blood). Procedure 2: Bilateral Bone Marrow Biopsy.  Pain Level: 4. Emotional Stablity: Total Wreck!! This was the big scary test of the day. I wa...

Front View. You can see the bulge on the right side. If you look at the Right profile photo you can then see the bulge in the back.

This is my left side. The lymphoma here is on the jawline and smaller than the right side.

You would think with your neck growing, you would recognize a problem quickly. But in all honestly, I just thought I was getting fat. {I have gained weight over the years.} Because of my weight gain, I just don't like photos of myself. Now I have to wonder, how much of this was weight gain or my neck was growing with cancer? These are photos of me one month prior to diagnosis. I hated them because I looked super fat in them. It is highly visible.  I wonder if it had been in a different part of my body if I would have noticed it or how big it would have gotten. This photo was taken in April at my birthday. Four months before diagnosis. I don't know, is it there? I think it might be. Much smaller. But I think I see it. Or am I making it up? Second guesses is all I have now. The oncologist tells me that as soon as I start chemo this lump will quickly go down. So with the help of my kid brother, meet my Lymphoma! My cancer is on the right side of my neck. Y...

Wayne and I met with the Oncologist today. Interestingly enough, the building that houses the Oncologist is very nondescript. I have probably driven past it a few hundred times and never even realized it was there. It was also nothing fancy. It more reminded me of going into a public health office than a cancer treatment center. Upon walking in, the very first thing I see is the treatment room. Inside this room were women, heads wrapped in scarves, sitting in leather recylners hooked to IV machines. I immediately have to gulp back the tears that have sprang to the surface. There was no wait. I had not even as much completed the first sheet of paper and the nurse was taking us back to the doctors office. The doctor was in the room faster than I could even have thought possible.  The Doctor, once this man started talking, he won both my husband and myself over! He took so much time to explain what I have, what I need to do, how we are going to do it, and complications...

So this week I am waiting.  Waiting for my first appointment with the oncologist. As I am waiting, I keep thinking about how angry I am that I am waiting. It amazes me how we crave or even demand instant gratification. Look at us as a society. We are overweight. We are in debt.  Aren't these things about instant gratification? I have thought about Grandparents.  They did not have credit cards. They had savings accounts. They never would have thought of buying something they could not afford. They saved and paid for things outright. Remember back when new home owners had to save money to buy a home? Now, we give home loans to people with poor credit history and who have no money to put down. Why?  Instant gratification. I have thought about my Great Grandparents. They were simple people. Worked hard. But no matter how hard they worked, they came home and fixed themselves dinner. They did not rely upon convience or fast foods.  But now...my own son...

My name is Pamela. I am 41 years old. I have been married to a wonderful man for 3 years. I am a mom. I have a 13 year old boy and a 2 year old girl. I have a dog, a cat, and a gold fish. I am a social worker, so you know I have spent my life taking care of others. I am a sister; I have 2 brothers. I am an aunt. I am a scrapbooker. My favorite color is pink. I love Bon Jovi! And I have cancer. Every June we go on vacation with my husbands family. On day 3 of our vacation, I woke up with a sore throat and a fever blister on a day we were hiking 6.2 miles. My sore throat went away (so did the fever blister) but my throat stayed swollen. Not causing me any pain, it was easy to ignore. I went to a chiropractor three weeks later and he noticed my swollen throat. A girlfriend was the first to tell me how deformed I was and that I needed to go to the doctor. The last week of June I saw my primary doctor. I had an x-ray, CT and blood work. She put me on 2000mg of antibiotics a d...