Week 2 - Update

It's Janet again. I thought an update for all my fans was in order. I had my first chemo treatment Friday the 13th, which was 10 days ago. As I look back in my journal to remember my week, all in all it was pretty good. I was tired on Friday after the treatment but it is hard to say if that was from the treatment itself, the meds they give you to prevent allergic reactions and nausea, or just the fact that we had to spend 5 hours at the hospital for a two hour treatment. I developed my first of what would seem to be a lot of really bad headaches. I have since discovered that only the hard-core prescriptions meds will handle them and even they don't totally eliminate the pain. My first day after (Saturday) was good too but Scott and I learned that before he gives me the $3200 injection, it really needs to be brought to room temperature. Ouch! Live and learn.

Tuesday, day 4, my IV port was giving me severe pain. It has been hard to move my arm since the surgery but now it really hurts. More meds for pain. I really hit the wall on Wednesday (day 5). I took the kids to school and promptly hit the couch when I got home. After a very sound 5 hour morning nap, I got up and was able to get a few things done around the house and still managed to volunteer in the Church nursery that night while the kids attended Church school. Thursday, day 6, I was still fatigued but not as badly. A two hour nap in the morning and one in the afternoon did the trick. I have still been experiencing bad headaches and my port still sends pain. I am sure the meds have something to do with my being tired but I will take that over the headaches and port pain. I have lost 6 pounds this week. It is hard to eat when you are not hungry. By Thursday, though, my appetite was coming back and I decided to eat whenever and whatever I wanted. By Friday, I was eating dinner around 3 in the afternoon and then eating again. I still haven't put the weight back on, but at least I am not dropping it as fast. Friday night my head started to itch uncontrollably. Scott says it is the attack of the hair follicles. Ha Ha. I told him he was nuts since I have decided to grow my hair long.

This past weekend was low key. Saturday Scott and I went out shopping in the snow storm and we all went to church Saturday night. Like we always do, we went out for dinner afterward and came home for family movie night. Sunday was Andrei's final basketball games before tournaments. They finished 16-1. WOW! We are so proud. He played well and has really grown in to a great team player.

Today, Monday, is day 10. I am happy to say that I didn't wake up with a headache and my port is tolerable. Andrei leaves for a school trip to Washington DC tonight (3:30am) so I am doing laundry. I am starting to increase my water intake for Friday's treatment. They want you to drink at least 1/2 gallon a day - preferably 3/4 gallon. Easier said than done. Aruna says I am going to grow gills. I will be a fish with long hair. :)

I am really enjoying the cards that just seem to keep coming! From the fuzzy ducks (long lost cousin!!!) to the beautiful sentiments, I find it amazing that there are so many people that care. Thank you. I hope you will continue to keep up with our family's journey for the next 14 months. I will be very excited to let everyone know how my hair is doing!

Favorite Color

It's Janet. If you read the comments on my last entry (Day 3 after Chemo #1), I was asked my favorite color. I can honestly say this has been one of the most difficult questions for me. I don't really have one color that is my favorite. I have stood in my closet looking at my clothes. I am ashamed to say there is a lot of scuba diving and Super Hero T-shirts. Mostly gray. Nothing that says "turn around and take a second look at me as I walk by!" (well, at least not in a good way) Needless to say, there was not a lot of inspiration to be had in my closet. Just don't tell the Fashion Police that I am in violation of any sort of style!

So....I pondered this question all weekend. I would go to sleep and wake up with this question on my mind. I finally made a decision. I decided to let my kids decide! (I'm so smart:)) I asked them both what their favorite color is. Andrei likes sky blue and Aruna likes red. Mix them together and you get some shade of purple (I think). Since this family is fighting cancer together, I thought my favorite color should be one which represents all of us. (Scott likes blue, too). So there you have it. My new favorite color. Some shade of purple.

Day three after chemo #1

It's Janet
So far so good. I can honestly say that I am responding well to the treatments without many side effects. I have experienced bad headaches which I am treating with ice packs and muscle relaxants They both seem to help. My IV Port is a different story. Seems the nerve endings are trying to reconnect and they really hurt when they try - it actually takes my breath away - and not in a good way. The only thing that has helped me there is ice packs and limited mobility of my right arm. Difficult when you are right handed - but hey! another skill to learn - being a lefty :)

I have been blessed and have not had any nausea or vomiting or fatigue out of the ordinary - yet. YEAH!! Sometimes it is hard to swallow but then I eat slower and cut my food into smaller pieces. Seems to help though the food gets colder faster! My weight is staying where it should - though I really wanted to lose some. I have not had any fevers, chills and basically doing great.

Just thought you would like an update.

Thanks for all the cards and e-mails. I am loving them! Keep them coming. It adds laughter to my usual boring day of laundry!

(Robin: I do deserve to be treated like the Goddess I am!!! Love it:) )

1 down 55 to go

Yesterday was the first Chemo treatment. Scott and I arrived at the hospital at 10 am as instructed and proceeded to get weighed in and the vitals checked. Then I produced a two page list of questions to go over with the resident and Dr. W (Dr. Wisinski Oncology). This was about the most humorous part of our day.

Scott's turn to blog: So Janet pulls out her list of questions ( on one hand good, on the other hand do we really need to know Dr. W's favorite baseball team - ok I made that up, but really, two pages of questions?). We were in rare form which most residents can't seem to figure out. Janet asked about medications for side effects. The Resident says they will provide different medications depending on the side effect. Scott asks if he can prescribe Rogaine. Janet laughs, resident looks puzzled but begins to crack a smile. In trying to keep this family friendly, I won't get into Janet's response to "could you be pregnant?". It did have both the resident and Dr. W. laughing, followed by me saying something about the possiblity of Janet seeing the Schwann's food guy so maybe we should do the quick pregnancy test - that got us all laughing out loud. Laughter is way fun, but obviously not something they are used to in this particular department.

We then got a good understanding for hurry up and wait. Everything has to be ordered (like they didn't know we were coming or something) and like the bakery it is first come first served. I think we were 274 and they were calling 12. They told us to go grab lunch - Janet suggest Sonic, imagine that. Anyway we had lunch and went back up to see they were calling 250 (ok I'm kidding but any waiting beyond the fact the the procedure itself takes 2 hours is rough). After about another 20 minutes in the waiting area they called Janet's name. For reference we got there at 10 am, it is now 1 pm and we haven't seen one procedure.

Janet's turn: We were escorted to a room about 7 feet by 8 feet. If they could have crammed any more stuff in this space it would have been a miracle. I was seated into a not so comfortable recliner that Scott, being in the furniture business promptly said was junk. He got the better seat - a fold up wooden chair! The room didn't have a door but a fancy curtain that reminded me of the Wizard of Oz scene "Pay no attention to the man behind the curtain!" The first round of drugs (Adriamiocin) had to be manually injected into the IV tube over 20 minutes. There were two syringes of this drug thus 40-50 minutes for this drug. It was red - and yes it comes out of your body orange to red color. It is suppose to and is a good sign that my liver is filtering the medicine. This wasn't so bad. I had an unlimited supply of cherry popsicles to such on and ice cream if I wanted. They like to keep your mouth cold to help keep the mouth sores at bay. I had two cherry popsicles then as Aruna affectionally calls it, I got brain freeze. The second drug (Cytoxin) was just pumped into the IV tube by a machine. This one took about 30 minutes. After that was done, I still had to finish the Saline solution - another 30 minutes. After that, my port was flushed clean, the needle was removed, and a teenie tiny round bandage was applied. Now we are off to pharmacy.

Scott's turn: So before this gets to War and Pease like length, there were only a couple of interesting things here before we left. First, because Janet insists on hyphenating her last name which makes it like 75 letters so the label system melted down. All they could put on the perscription bottles was Janet. We decided to have them use Slaughter so they have something other than Janet - cute, but not real practical in a hospital pharmacy. The second thing was the shot to help with her white cell count. Here is my pitch for healthcare for everyone. You know how you get a little print out that says how much you saved by using your store coupon card or coupons? Well we got one of those for each of the prescriptions Janet had to get (5 total). Each came with a little print out telling us how much we saved. Well the copay on the shot (one shot, one time, one dose) was $40. Our savings was $3,180.45. What the hell does someone do if they have no or crappy insurance? Sorry, you get to have low white cell counts. Hope you don't get sick. Our current system, while good, needs some serious looking at.

We did a little shopping before we got home. Andrei had a sleepover so Janet cleaned the kids bathroom.

It is Saturday now and Janet feels fine. In fact you could almost say she feels normal which is a huge blessing. She missed Andrei's basketball game this morning. She should stay away more often. He scored a season high 22 points, blocked like 6 shots, stole a bunch of passes and was in general a monster on the court (and for those who know Andrei it was monster player, not monster hot head the refs and opposition can't stand being on the court with).

Till next time...

Janet's Treatment Decision

Well...after much thought and discussion, I have decided to not participate in the Clinical Research Trial. Though the medicines were the same, just different doses at different times, I didn't think it was fair to my family to add 4-6 more weeks of chemo onto the already staggering 14 months. With their support, treatment #1 is Friday the 13th. Wish me luck! Janet

I plead the 5th!

Hey. It's Janet. I wanted to let everyone know that I don't remember anything I said or did before, during or after the IV port surgery! Personally, I think all this Sonic Burger talk is made up just to make fun of me:) In any case, a Sonic Burger does sound tastey and I do love them :)

Did you know there is a Sonic in Madison?

Janet was safely in her outpatient room at 10:15 a.m. as she was told to be. She quickly started into a movie, which is my cue to head out so she can safely flirt with any hotties at the end of her bed. We texted back and fourth just before she went in for her procedure.

One thing we learned at the last post surgery follow up was that Dr. B had no idea what a Magic 8 Ball was. Janet and I were asked some sort of deep thought provoking question during that visit that made Janet consult the Magic 8 Ball application on her iPhone (has she told you how great they are?) for guidance. This of course got a chuckle from the 3rd year resident but a puzzled look from Dr. B. She had no idea what a Magic 8 Ball was (or why in the heck we would turn to something like that for help answering a question - of course it made Janet and I laugh which is mostly all that matters).

So Janet being Janet, she bought a Magic 8 Ball for Dr. Beckman which she loved. She is going to keep it on her desk (I can only imagine how embellished the story might become over time, might be fun to become an urban legend). They got started late (not because of the 8 Ball) so I had time to be late, which I was, getting back about 1:45. At 2 p.m. the entire crew (Janet, 2 nurses, Dr. B and a resident) came back to the room. Everyone was laughing - good sign. Everyone was laughing at Janet - better sign as now I will have something to tease her about until the end of time.

Seems in recovery Janet could not stop talking about Sonic Burger. We have a Sonic here in Madison (technically Middleton, but close enough) and Janet is very excited about it. We try to stop at a Sonic on our way to or from on our trips down South, so the thought of one closer than 6 hours away makes the commercials easier to take. So for what ever reason this was on her anesthesia filled mind much to the entertainment of the room. As she was getting back to the room, the resident asked Janet if she knew how many times she had asked him if he knew there was a Sonic in town. She gleefully said no and with a laugh he said this was time 3. Janet went on to ask anyone she saw for the next half hour or so if they knew we had a Sonic. Funny thing was she wasn't particularly hungry, just seemed to want to talk about Sonic. Ah the wonders of the human mind on narcotics...

It is Sunday now and Janet has been out and about a bit over the past two days. She has more discomfort after this surgery than she did after the last. She has ended up taking Vicodin to help take some of the edge off the pain. The port is under her skin below her collar bone and is a pretty visible bump - no wonder she hurts it looks like she has had about half a golf ball implanted. I am still very proud of the way she is going through this entire adventure - head up, smile on and quick to laugh at whatever happens to hit us as funny at the moment. I can highly suggest laughter, it really is the best medicine.

Our heartfelt thanks go out to all of you taking the time to read this, pray, call, send a card or note - really everything each of you has done. Each of you in one way or another has brightened what could otherwise be a very difficult time for Janet and we truly appreciate it.

Surgery #2

Wouldn't you know it, but as soon as I posted the MUGA Scan Test,(trip #2 to the Glow Farm), the out-patient surgery nurse calls. Tomorrow, Friday 2/6, I have a 12:15 surgery date with Dr. Beckman. I decided to get an IV Port implanted in my chest. I highly doubt my vein would withstand 14 months of weekly infusions. Another scar.

I have to be at the hospital at 10:15 am. They tell me surgery is scheduled for 1 hour and 15 minutes with 2 hour recovery. Seems like a long time. Either way, I have given Scott the permission to dump and run and pick me up at 3:30. Business as usual.

I have been busy today reformatting movies on my laptop so I can transfer them to my iphone and watch them tomorrow. (Have I told you that the iphone is the best ever and all of you should really get one :) ?) However, if I don't finish my movies, the nurse told me the room I am assigned to has a TV and DVD player in it! I must be special to get such a posh room! I wonder if this is because I have been their best customer lately?

I have been receiving wonderful cards and beautiful flowers. Thank you to everyone. All of your support and prayers are deeply appreciated!

Back to the Glow Farm - MUGA Test

It's Janet.
Tuesday, 2/3, I was back at Nuclear Medicine for another visit. This time they were checking my heart. Instead of directly injecting the radioactive substance into me like my last visit, they withdrew blood, mixed it with the radioactive stuff, and then reinjected the blood into me. Not so bad. Then they took pictures. It was really cool to see your own heart beating on the computer screen. Good news for me, I passed the test. This means that my heart can withstand the chemo treatments. I had the same young lady as last time and she informed me that I might have to visit her again throughout treatment. Always good to know that the doctors want to make sure your heart can handle the medicines! Next it is off to surgery #2 for an IV port.