Feeling Much Better

I am strong enough to be at home alone today - we'll see how long that lasts before someone drops by to do laundry probably :)!! I am feeling much better and no longer taking any anti-nausea meds. My doctor's visit yesterday went well. My white blood cells were down to 1000 (normal range is 4,000 - 11,000) and will be dropping further this week. So no going out to public places, no fresh vegetables or fruits, avoid sick people, and do lots of hand washing thru the weekend. Any sign of fever means a quick trip to the doctor. He did start me on a heavy duty antibiotic for the next seven days as precautionary measure. I also got three days of potassium HORSE pills since I guess my electrolytes got out of whack. Other than that, my only symptoms are fatigue and some vicious acid reflux (caused by the chemo and being handled with Prilosec).

It is wonderful to feel alive again. I think it is true that you can't fully appreciate some things unless they are taken away from you. Your health definitely ranks up there as one of those things.

I hope to enjoy the next week recuperating (hopefully with no infections!) and getting ready for Round 2. As it stands now, my Mom and I will leave for New York next Wed for another round of ICE at Sloan Kettering. I will have blood work done on Monday that will determine if I am still on track.

Still Recovering

Just wanted to check in and say I am doing ok and still recovering. The anti-nausea drugs are pretty strong and I slept a lot over the weekend and I was also very weak. But I have stopped taking some of the meds and have been a little more active today. We went to shot clinic yesterday and got my Neulasta injection which should kick start making some new white blood cells. My counts will be dropping over the next several days but hopefully start rebounding by the weekend. Not much else to say...just thanks again for all the support.

Back at Home

Day 2 & 3 of ICE were pretty much spent asleep or in a daze. I think the continuous drip of the Ifosfamide was the hardest, but it ended around 11pm last night and I was a little more human by this morning. They gave me some extra anti-nausea drugs which helped a little, but mostly just knocked me out.

Mom and Brant snuck the kids to my room yesterday and it was great to see them for a few minutes. I can't wait to see them when they get out of school later today.

I had my last dose of chemo this morning at 10am. I was happy to lose the IV and I think my veins had a tough go of it. Hopefully they will recover before the next go around. Mom was on hand to get me packed up, and Brant took off the afternoon to bring me home. It was so nice to walk in the house. Brant's mom came by yesterday and cooked and cleaned, so the place seemed like paradise after being in that hospital room for 3 days.

I'm pretty washed out and will spend the next few days recouping. Thanks for all of the comments, it is great to hear from you guys. If you don't want your comments posted, just let me know or you can email me at bnrcox@yahoo.com.

ICE- Day 1

I am finishing up my first 24 hrs of chemo at Norfolk General. It was a little slow getting a bed and getting the chemo started, but I am finally underway. Yesterday I went to work while waiting on my call to come to the hospital. I couldn't help but see some parallels with when you are ready to deliver a baby - your bags are packed but you don't know when you are going, you can't help but be anxious about the pain and discomfort that you know is coming, and you know that when you leave the hospital in three days, you will feel a whole lot different!!!

For the technical stuff - I am getting ICE chemo that consists of Ifosfamide (two big bags that drip sloowllly), Carboplatin (once on the last day), and Etoposide (a 1hour drip given three times, 12 hours apart). So far it hasn't been too bad. I have that chemo brain feeling (dull headache and in a fog), the weird taste in my mouth, and am pretty tired. But the tired part could just be all the stationary time. I have a new friend (IV pole) that follows me everywhere and beeps when I hold my hand the wrong way. I had two IVs started and both were done very well and are not uncomfortable.

Last night I was woke up at 1:30am for bloodwork - how convenient. I really don't think they needed blood since it had been drawn less than 12 hours earlier and I had only been getting chemo for about 4 hours. But that is protocol. Suddenly I felt like I was at work and I had turned into a citizen that was complaining about our unreasonable policies that we didn't want to take the time to make exceptions for. So I tried to see it from the medical staff's point of view and realize that having standards helps keep things from falling thru the cracks.....but it still hurt..... and after my anti-nausea steroids, there was no getting back to sleep!!

As you can see, I have high speed internet access here. Very cool. My room is private and rather large, wish they had these over on the maternity floor a few years back when they stuck me in a closet with no bathroom! American Idol has helped kill the time in the evening. Since I was delayed getting started, I won't be discharged until Friday morning.

Thanks again so much for the well wishes and prayers. The support has been wonderful. I was reading my Bible today and came across this passage. It made me think about how may people are offering up prayers for me and I am just so grateful. Psalm 20:1-5 "May the Lord answer you when you are in distress; may the name of the God of Jacob protect you. May he send you help from the sanctuary and grant you support from Zion. May he remember all your sacrifices and burnt offerings. May he give you the desire of your heart and make all of your plans succeed. We will shout for joy when you are victorious and will lift up our banners in the name of God"

Planes, Trains, and Automobiles

Well I made it to NY and back, but not quite how we had planned. The flights were looking iffy because of the winter storm, so mom and I were going to switch to train. But then I wasn't able to book a return trip - by plane or train - until Sunday. So Brant decided the most reliable transportation to NY would be to drive me there. We left Thursday afternoon and Brant made the trip in just 7-1/2 hours. The roads were clear, but it got colder and colder as we headed north. We checked into the hotel Thursday night and woke up to 12 degree temps on Friday morning!!

Our hotel was nice - we got upgraded to a suite. But we were only on the 3rd floor so the symphony of taxi horms outside the window was a bit amusing. The hotel is right next to the East River at the Queensboro bridge. There is a restaurant/bar on the top floor and Brant & I went up to check out the view Thursday night. This picture doesn't do it justice, but you get a feel for it.

The next morning we ate at a diner on 1st Ave and could see Dangerfields across the street. The walk up to the hospital is only 5 blocks and with the sunshine it wasn't too bad. The hospital district, as I call it, is in a pleasant residential area.

The doctor's visit went well, the trio of Dr. Moscowitz, the resident working with him and his research nurse have all been great, and this visit was no different. While I was there, they decided to take some extra blood for two other studies they are doing on Hodgkins - apparently my blood is of interest to them! I should be ready to go for my first treatment of ICE chemo next week here at Norfolk General. Then I will start with Sloan Kettering in March - around the 8th - for another round of ICE and my stem cell harvest.

We checked out of the hotel at 1pm and headed out of town. I didn't envy Brant driving in the City. You just can't appreciate the traffic, the road conditions, and the aggressiveness of the drivers unless you experience it. It is nothing short of bizarre. And don't expect to get anywhere unless you are pushy yourself. I think the drivers smell fear and don't bother letting you in unless you prove you are willing to crash your vehicle, then they back off a little. I just closed my eyes mostly.

We headed out westbound to cross Manhattan and leave town via the Holland tunnel to the Jersey turnpike. But all of the sudden (and I do mean sudden, no signs, no other options to turn, etc...) we were headed eastbound across the Queensboro bridge (I think that is what it was). We were riding in what seemed like a separate pedestrian outside lane of the bridge that had been converted for vehicles in order to add some road capacity (this is probably not true, but it sure looked like it!) We were inches from a steep drop to the river with only a rusty, dilapidated rail between us and the air. They view was nice (when I could bear to open my eyes), but I think Brant's knuckles turned white gripping the wheel.

We were now in Queens and not sure we wanted to deal with turning around to get back to Manhattan. As navigator I plotted a route south and west via the Queens Expressway, and it only took a few last minute "no - this way!!" instructions, one turn around, and a quick stop for 7-11 employee directions to get there. The traffic was bumper to bumper but the route gave me some really cool views back towards Manhattan and also of the Statue of Liberty out in the bay. Too bad Brant couldn't really look, but I did appreciate him getting us out of town safely. The trip home took over 9 hours......yuk!

Sorry for the long post. I'll check in next week and let you know how the chemo goes. As of right now, I am scheduled to be admitted on Tuesday.

Delayed......

....I am definitely getting used to this! But it does seem much easier to tolerate hold ups when there is an end in sight and you know what you are going to do. I got a call yesterday that Dr. Moscowitz would be leaving town Tuesday by noon, and if I wanted to see him I would have to get there before then. We could have changed airlines (for a small fee of course!) and arrived around 10am, but it just seemed like it would be cutting it too close - especially if the weather was bad and we were delayed. So we have changed to a Friday morning appointment and will probably go up Thursday evening. This will give us a little more time which is good since I wanted to check out the options for short-term living when I am back for future treatments.

Dr. McGaughey confirmed I will be getting my first ICE treatment locally - yeah! I should know more details by the end of the week. It will be administered at Sentara Norfolk General, probably over a 3-day stretch. I am hoping it goes so well that Moscowitz thinks about doing round 2 down here as well.....but that may be wishful thinking! Other good news is that my PET scan results were consistent with the CAT scan - the disease appears to be pretty stable since December. There is one new active node, but it is small. Some of my other nodes were actually less active.

My big news is that I turned in my resignation this week and will be leaving my job as of Feb 26th. It will be really hard to say good-bye (already has been!), but I am very excited about being able to focus full time on treatment and family. I told the kids tonight and they were actually sad (great, huh?). Katie said "but Mommy, that is what you do, you can't leave!" When I explained that I wanted to spend all my time getting better and that leaving would let the City replace me with someone new, Chris said "oh yeah, just like a substitute". I laughed and said it would be sort of a permanent substitute, but he insisted that it would just be until I wanted to go back. Then they were both really excited about riding the school bus home (wait until they realize they can't go to Covenant after school - they will be begging me to go back to work!!!).

My cousin Cindy and her husband Bob showed up in town this week and I have enjoyed their company. Cindy has been clinically diagnosed as being too optimistic, and I have found her affliction to be a good one to be around. It does appear to be somewhat contagious. The kids absolutely love them since they are just over aged children themselves. So missing the trip to NY hasn't been too bad since it has given us more time to visit.

A Busy Week

We had a busy week here of scans and blood tests. Looks like everything is all done and I have plane tickets to go to New York next Tuesday with Mom. Can't you just see her in New York?? She will be great moral support, but not much for directions I think! When I was gathering up all of my paperwork today, I looked at my CAT scan results from yesterday. It sounds like things haven't gotten significantly worse since December - that was a huge relief!!

It also sounds like I will be having my first ICE treatment down here in Virginia. However, everyone was out of town today so I don't have any details about it yet. Hopefully I can start the day after I get back from NY - a romantic Valentine's day getting some chemo?? But based on how everything has gone, it seems unlikely I could go from one thing in this process to another without at least one or two days of waiting!!!

Oh well, it's Friday night and I intend to enjoy a relaxing weekend. The kids are missing something these days - can you tell what it is??

Best of Both Worlds

We aren't really sure how the insurance thing is going to play out (it has been a long week of much effort without any final results yet), but we decided to at least get the first treatment started in New York even though we realize we may have to self-pay. Hopefully things will be worked out before the second treatment starts. When we told Dr. M of our decision, he said he would work to do as much of the first round of treament locally, since it is very similar to the ICE treatment I would have if I wasn't in the trial, and I could be covered by my local insurance. So next week I will get some pre-treatment testing work finished up and then fly up to New York to sign a consent towards the end of the week. If all goes well, I will come back here for the first round if treatment. So this is my reason for the Hannah Montana post title - New York protocol, locally administered, best of both worlds! After that, we will have to make a decision on continuing in the trial (hopefully insurance will be resolved) up in NY, or drop out of the trial and finish chemo and stem cell transplant under the standard protocol locally.

Thanks SOOO much for all of the cards and prayers and letters and offers to help. You guys are awesome and Brant and I feel so blessed to have such a great circle of friends and family.