Dreams April 29, 2007

Susan insisted that I write at least a brief post to let you know that she is alive and well. Her neck is still very sore. Apparently there is a nerve (or tendon, I can’t remember which) that was cut in order to remove the lymph node and tumors from her neck. This nerve seems to be connected to her left arm somehow and, thus, she cannot lift her left arm and there are very few positions that are comfortable for her. She decided to drive to church today (I had to stay home to get caught up on a few work matters that need to be done by tomorrow morning), and she quickly realized that she isn’t currently a safe driver. Luckily, Ryan’s wife is out of town and he was more than willing to get away from home and drive Susan and the boys home after church. When she got home at about 11:30, she was in a lot of pain, but rather than lay down and take it easy, she felt like she needed to go to the hospital to be with her sister since nobody else could be with her at that time. Thus, She and Ryan went to the hospital, while I stayed home and watched the boys (the hospital where Mandy had her baby doesn’t let kids into hospital rooms with newborns). After an hour or so, they came back and Susan took a Tylenol with codeine to try to relieve some pain so she could go to sleep. I let her sleep for a while and then I got a call on my cell phone from her. I picked it up and she whispered, “I need you.” I went upstairs where she was laying in bed, still with her eyes closed. She asked me if there was a bug on her face. I said “no.” She asked again if there was a bug on her face. I told her “no,” again. She then told me that she couldn’t open her eyes, even though she was trying to. I rubbed her head for a while to calm her down, but a few minutes later she asked again if I was sure there were no bugs on her face. Having had no luck telling her the truth, and at this point realizing that she was still at least half asleep, I said, “now that I look closer, there is a spider on your nose,” and I proceeded to smash a pretend spider on her nose. About thirty seconds later, the imaginary spider had spread over more of her face so I told her that the spider must have left some baby spiders on her face, which caused her to more vigorously rub her head (OK, maybe I just thought about telling her there were baby spiders on her face). It was interesting to be inside one of her dreams. I quickly calmed her down and she went back to sleep again. I asked her about the bugs on her face tonight, and she remembered nothing about it. Just another example of how sensitive she is to drugs. She is generally doing better though and looking forward to getting started on treatment as soon as possible. She is very scared for the bone marrow test on Tuesday though, which apparently hurts pretty bad (according to a recent episode of “Grey’s Anatomy” that she saw).

Perspective April 28, 2007

I thought I would clarify what yesterday’s post meant. It is all about perspective. 2 weeks ago I would have never guessed I would be praying for any form of cancer. But after the roller coaster of finding out just how bad different forms of cancer could be, I was relieved to find out that I have a cancer that has a high cure rate. It is still cancer, though. There are still cancerous tumors throughout my chest, in my neck, near my liver, and possibly in my bone marrow. I will still need to endure many months of chemotherapy and then radiation, not to mention I will have to get the bone marrow test on Tuesday. I will lose my hair and likely be very sick throughout the treatment and the treatment may make me more susceptible to other types of cancers and other sicknesses. Having said all of this, I am thankful that I have a cancer that does have such a high cured rate, and that I will be able to watch my kids grow up.

It is funny how your perspective can can change so much in just a few weeks. I’m not looking forward to Chemo, seeing how a little bandage caused such a horrible allergic reaction. It is going to be a very rough ride. But I do enjoy reading everyone’s comments and it is quite entertaining. Today I’m swollen and very sore. I stopped taking pain meds b/c I thought they might be causing the allergic reaction. So I’m practicing pain tolerance. Best thing I have found is distractions. Have a wonderful day full of distractions. My favorite distraction came today at 10:11am when my niece Kaylee was born. 7lbs 19in. She is beautiful!!! I’m so lucky to be an Auntie again!!!

My prayers have been answered - I have Hodgkins Disease!! ;) April 27, 2007

The biopsy results just came back, so it’s official. Okay they just faxed over the report is says: Malignant Lymphoma, Hodgkin’s disease, Nodular Sclerosing type. Not sure what the 2nd part means. But I know Hodgkin’s was better then non-hodgkins.

Surgery SUCKS!!! April 27, 2007

I’m really sick today. It is no fun to dry heave with stitches in your neck. I’m having an allergic reaction to the bandage on the neck. I have terrible itching and it feels like its burning up through my ear. Mom and Russ are diligently trying to push fluids and food down me. It was a very rough night. I was up allot with pain nausea and my extremities falling asleep. I also was terribly itchy and sweating profusely. Not to mention the nightmares. I can’t keep my pain meds down so my neck is KILLING me. My dear sweet Rhonda came over and put a new bandage on me and brought food, which Russ informs me he spotted brownies. This of course makes his day. I think that is the best part of me being sick he gets to enjoy lots of comfort food. I can’t tell you how wonderful it is reading the blog and my e-mails. They are such a great distraction. I love being able to chuckle while I feel like crying. I’m going to try and take a nap and forget how awful I feel! Yesterday I had to be isolated because of my new radio active powers. Ty and AJ kept opening up my door and giving me long distant hugs and kisses. Ty got upset and started to cry at bed time b/c he really wanted to touch me. So Russ said he had to run really quick to me for a tiny kiss then run back. This made his night. Adam of course heard this and wanted a turn. So Russ said ready set go…Adam comes running to me then in a panic say, ” where do I kiss you?” I kissed the top of his head and he ran back to Russ as fast as he could. It was a very special moment for me. You really take for granted how special a hug and a kiss are to a child. You don’t realize it until it’s taken away. I think in the back of the kids minds they were hoping to get a little radio active material so they could transform into the real teenage mutant turtles. I’ll let you know what the biopsy results are when we know.

“Strawberries” April 26, 2007

Here are the tumors removed from Susan’s neck, which the surgeon said were the size of strawberries. I asked if I could go into the operating room to watch the surgery and take a picture of the tumors, but they could not be convinced. They also “didn’t want to be responsible” for our camera, so the best they could offer was a Polaroid picture without any frame of reference. Since there is no reference object in the pictures, I went ahead and added a reference object that makes the size more clear.

Radioactive Day April 26, 2007

Susan is in the PET scan trailer (they are only at Sharp hospital 3 days a week and are elsewhere doing PET scans the rest of the week) letting her radioactive injection dissipate throughout her body. For those of you that will see her in the next 24 hours, touch her at your own risk as she is radioactive and anyone she comes in contact with will absorb some of that radiation (seriously). The tech said that she should especially limit contact with children as they are more susceptible to the radiation. When asked if she could at least kiss the boys before they go to bed, he said, “as long as it’s a short kiss.” Interesting stuff. I learned a little about how the PET scans works also: 1) radioactive material is easy to detect, 2) cancer likes sugar, 3) if you give a patient radioactive sugar, the cancer will feed on the radioactive sugar and can then be located by determining the radioactive portions of the patient.

After the surgery this morning, she was in pretty rough shape. She was nauseas and in a lot of pain. I’ve been pushing her around in a wheelchair since we left the surgery center, but now she is in a lazyboy recliner getting radioactive. In a few minutes they will start the PET scan, which will take about another 15 minutes. I was really hoping that, for some reason, she would endure this surgery better, but I guess she is still very, very sensitive to drugs and pain.

That’s all for now. I think she will probably be sleeping the rest of the day and through tonight (hopefully).

Surgery April 26, 2007

I just talked with Susan’s surgeon. She is in the recovery room, the surgeon says that everything went well. I was starting to get worried, though, as she had been in surgery for almost two hours for a surgery that was scheduled for 75 minutes. The surgeon gave me a Polaroid picture of the tumor, which turned out to be two tumors that are the size of “strawberries.” One tumor was behind the lump on her neck that we could feel, and apparently removal of that extra strawberry made the surgery take a little longer.

The surgeon is going to try to get us the biopsy results tomorrow, so hopefully we will have a more definitive diagnosis.

I expect to be able to go back and see her any any moment now.

I’m ready to go April 26, 2007

I’m waiting to go into surgery now. They got my IV in the 1st try!!! We have a great triumph for the day. The trick we found out was to numb my vein first. I’m terrified of going under!! AHHHH I made sure to let the surgeon know I have many important arteries in that area. I also let him know I don’t need any more excitement this week. Thank you for all your prayers this morning. Russ will blog later and let you all know what happens. The part I’m sad about this surgery is I don’t get a cute baby afterwards to love on. But I did ask them to take a picture for me so I can see it. My poor sister Mandy is going to have a c-section any day. I can’t wait to meet my new niece Kaylee. I have something wonderful to look forward to. Have a great morning!! Enjoy moving your neck around for me.

The Calm Before The Storm April 25, 2007

I started the day with my Dad Chauffeuring me to the surgeon’s office then to the hospital to register. I highly recommend his chauffeuring company! But I think he is exclusive only to daughters. The nurses at the hospital are angels. They arranged for the IV to be left in so that after the surgery I can go down to the other hospital and get a PET CT scan and not have to get another IV. Since all my veins are shot this was a huge blessing. We tried to get them to do the bone marrow biopsy while I was asleep, but no luck. Only an oncologist can do it and my oncologist doesn’t have clearance at this hospital.

While I was at the hospital, the PET Scan scheduler called and said they can only do it Thursday at 11:30. So the nurses at the hospital right then change the whole schedule around to get me in at 7:30 am so I can make it to the Pet scan. This meant a lot of work for them. I said, “I’m sorry!” The nurse said, “Don’t be sorry. That is our job to do what is best for the patient.” I can’t tell you how touched I am by the tenderness of the 2 nurses. They arrange for me to get my blood done there by the expert instead of sending me off to a different lab. They came
with me and gave me a hug and said they new I could get through this. One nurse said she would come over to pre-op to be with me. I was so touched by this. The truth is I wouldn’t probably appreciate these nurses if I hadn’t experienced such a horrible nurse in the beginning. By the way, the mean nurse Sherrie called while I was at the hospital. She was mad I went to Dr. Shiftan the oncologist and was scheduled for the biopsy tomorrow. She said no one told her. I asked her if she knew an oncologist who could do the bone marrow test and she sad no, and some other rude thing I can’t remember, and hung up without a good bye. I just have to tell myself she is having a worse week than me.

Initial Diagnosis April 25, 2007

Today was the most productive day since I was diagnosed. I woke up got ready took AJ to school. Then I baked cookies for all the nice nurses who pushed to get my apts to the first available.
Russ and I took the van in to get fixed. Then headed down to the surgeon’s office. The surgeon came in and did an exam. Said it was some sort of Lymphona. He explained that he would remove the lump on my neck. I will be put to sleep the he will make an inch incision and take out the lymph node. His guess is that it is the size of a golf ball. He also said there was a typo on the CT scan report that 3mm should be 3cm in my chest report.

We scheduled the surgery for Thursday. Then we went to get another CT. I had to drink another glass of barium. It didn’t taste that bad it was just hard to stomach and had a bad after taste.
Then we made the attempt to get a vein for the IV. First stick he gets the vein and then the vein blew. 2nd attempt same result. So we once again took the films with out the dye. This is bad b/c it is very hard to see the lymph nodes. We took the films right then and Russ had picked up the blood results and we headed down to the oncologist. Dr. Shiftan was very kind. He spent a lot of time answering our questions. He pulled the films out and showed us in detail what we where looking at. He also showed us that the new scans showed a mass by my liver. With all the info we have so far, his best guess is that this is Hogkin’s stage 3A. We will not know for sure until we get the biopsy results. We go in tomorrow to register for the surgery and maybe get a pet scan.