Day +30

Wow! Yesterday was 30 days since my stem cell transplant, and it has been about 2 months since my cancer-free scans! Yeah! It is hard to believe that time has passed so quickly when just a little bit ago I watched the clock move so slowly, anxiously awaiting each day to end and bring me closer to going home. Now that I am home, the days are flying by!

I am doing very well health-wise. I am feeling much stronger and doing more stuff, but I still take lots of "rests" since I tire out easily. The kids are swimming in the pool, and so I am spending lots of time sitting outside with them. The sunny weather has been wonderful!

My check-up in New York is Thursday and I am planning to drive up with my dad. We hope to pick up my oldest brother and his family who are arriving at JFK on Wednesday and all drive back to Virginia together. Both of my brothers from Australia are coming in town for a family reunion. My other brother should be arriving at the airport as I type this and be picked up by my sister and dad. We haven't been all together (us four kids plus my parents) since '88 so this is quite exciting. We had actually planned this reunion for April in Australia. But that trip was cancelled due to my health and so my brothers and their families decided to come this way instead! I have two nieces and a nephew that I have never met and am so excited to spend some time together over the next three weeks.

Well I am off to get some rest. It is nice being able to fall asleep again with no medications needed. I am almost feeling normal......well, minus a little hair.......

Good Check-Up

I went to see Dr. McGaughey today at the VOA office and everything is going well. My white blood cell count was very high thanks to the shot of Neulasta that is encouraging WBC production. The effects of the shot should last another two weeks. My platelets fell from around 90,000 down to 60,000, but up and down counts aren't unusual and platelet production is usually the last thing that the bone marrow starts making reliably.

Proving that medicine is more of an art than an exact science, it was interesting to hear Dr.McGaughey's very different protocol for post-transplant care. Sloan-Kettering is ultra-conservative and VOA is much more liberal in how they treat patients. While I don't intend to ignore Dr. Moskowitz' instructions from S-K, it was good to hear that I may not be as fragile as they make it seem. If I were a VOA patient, I would have no restrictions and no medications at this point other than using good judgement as I regain my strength. Dr. McGaughey's opinion is that my immune system is probably close to 90% of pre-transplant right now. The biggest issue that most patients deal with is fatigue over at least the next 3 months.

Being home has been great. I am up and about and doing things, although I do get tired quickly. My stomach still bothers me but has been better today. It was nice to drive myself to the doctor and I actually stopped at the store on the way home. I am walking around the block most days and have enjoyed sitting outside in this great weather. The kids are wonderful....in fact I need to get going to go watch Chris' last regular season baseball game.

P.S. - I'm back from the game and Chris' team won. They will probably go in to the tournament tied for first! Here are some baseball pics of the kids:

Doing Fine

Things are going well here at home, and yes, I am behaving. Today was my first day of getting out of the house. I went to watch Katie's tball game this morning and then rode with the family to run a few errands (but I stayed in the van). It is a gorgeous day and it felt good to be out.

So far things are ok in terms of me avoiding infections/colds. My stomach still has issues - sometimes if I am hungry, sometimes if I have eaten. I am sure it will take time for my system to get back to normal. It is frustrating at times not to be able to go at 100%, but then I realize how impatient that is being and how blessed I am to be doing this well.

I have a check-up locally with Dr. McGaughey on Tuesday and will probably post any updates after that.

I'm Home

Just a quick post to let you know we arrived safely at home. It was a long train ride, but definitely worth the trip to be in my own home and see Brant and the kids tonight. The next two weeks I will be very conservative - our bedroom is the "clean" room with no kids allowed. Chris and Katie know to wash their hands frequently and they can't have friends over for a little while. We just don't want anything to happen, especially since they let me leave town so quickly.

I am tired and still weak, but looking forward to this next phase of recuperation. It is just soooooo nice to be home!!!

P.S. - I edited my Mother's Day post to include the pictures.

I'm Going Home!!!!

It wasn't his first choice, but I convinced Dr. Moskowitz to let me go home and come back for a check-up on the 31st. He is really reasonable and I think he could tell how much I wanted to be home, plus he knows I will have Dr. McGaughey available if there are any problems.

My bloodwork was good. My white blood cell count was a little low at 2.0 (normal range is above 4.0), but my system is still building after the transplant. He gave me a shot of Neulasta which will help boost my counts for the next few weeks. My platelets were just shy of 100,000, so they are getting close to the normal range of above 140,000. And my potassium was back to normal so I can stop taking that horrible horse pill twice a day!!!!

Since he doesn't want any planes yet, mom and I are getting on a train at 3:00am (yikes!) and should be home around noon tomorrow. She made it back in town just to turn around and leave!! We had made plane reservations for Brant and mom a long time ago and had no idea this is how the schedule would fall. I am just so excited and grateful that it worked out that I could leave. I promised to be really good while at home over the next two weeks since I am still very much at risk.

Thank you for your continued prayers and support, it really helps having all of you with me in this!!

Happy Mother's Day

I hope all the mothers out there had a great day. Of course I am not too excited about my first Mother's Day away from the kids, but it is nice to have Brant here with me. He has been taking great care of me fixing all the meals and doing dishes, too!!

We had planned a gondola ride on the lake in Central Park, but our reservations were for 7:30pm and it was pretty cool here today, so we decided that wasn't the healthiest plan. So instead we went on a bicycle taxi ride thru Central Park this afternoon. The weather was beautiful and our driver/tour guide was a lot of fun. I think it was better than the boat ride because we saw so much more of Central Park than I could ever walk to and we learned a lot of neat stuff about the place.

We posed in front of the fountain that is used in the opening of "Friends"......well, the fountain they filmed is a replica located out in LA, but you get the idea......

We had a gorgeous view of the lake and skyline behind it. And we saw the Angel fountain that was sculpted by a woman in the 1800's, the first woman to be awarded a major Park's commission in NYC. The fountain is located in the exact center of the island of Manhattan and was built to celebrate the establishment of clean drinking water, which had previously caused much disease.

We also sat out by the Conservatory water and watched the remote control sailboats race across the lake. It was a very nice day.

As for me, I am getting better each day. My appetite is returning (shock....) although I still have limited taste. Our walks get a little longer each day. I am managing to get my pills all down - yuk! Not much else to report. Just taking it easy waiting for my doctor's visit on Tuesday. I'll post after I have results from that.

Day +14 - Discharged!!

I was released from the hospital today just on schedule (I will drop the date count from my titles now, I'm sure it is getting a tad old.) My platelet counts held and so my catheter was removed this morning before I left. It wasn't too bad of an experience, much easier than when my mediport was removed. We packed up all of my stuff and taxi'd over to the apartment. We are so grateful to be able to use it again for a little bit. It is so comfortable and homey after being in that hospital room for 3 weeks!!!

I have some pretty strict restrictions for the next three months - like no restaurants/deli/take-out, crowded places, or being around anyone sick. Also, it sounds like gardening is out for this season as well - I guess the soil will have time to rest, ha! Although I have heard that Dr. Moskowitz is pretty lenient and relaxes the restrictions sooner than most docs, Brant and I feel it will be better to be safe and conservative. So no Mother's Day brunch in NY for me.......or my Dunkin' Donuts Iced Coffee that I had been dreaming about. It is all Chef Brant around here.

We took our first walk to Central Park today (only two blocks away). The weather is gorgeous and we just sat on a bench and people watched. A lady sat down next to us with an Australian Shepherd who barked at racing children and then sat and rested just like Augie....very cute. There were still a few tulips left and they were huge - wish I had taken my camera.

Well, the next few days will be nerve-wracking being out of my safe cocoon and hoping not to catch anything, I see the Dr. on Tuesday to check my progress. I have no idea if I will leave after that or if I need one more week to make sure my system is stable. We will just take each day as it comes.

Day +13 Disconnected!

My progress continues and this morning I was disconnected from my IV pole! I can walk around without a Buddy - yeah!

The changing of the guards went well. I was very excited to see Brant yesterday and Mom made it home safely to Virginia to take over kid duty. Mom said she and the kids were going to sleep outside on the trampoline last night because Brant's mom, Pat, had come over and cleaned the house so well she couldn't bear to mess it up!! Thanks Pat!

So on the medical side of things, it looks like I will be discharged tomorrow and go back over to the apartment. I have to stay in town for one or two doctor's visits to ensure I am stable before travelling back home. I have no idea when I will get to leave for VA, but I am hoping it is at least by the 24th. Brant and I are very excited about leaving the hospital tomorrow and being able to enjoy the weekend before he heads back on Monday.

It looks like my platelets have stabilized. I went from 42,000 yesterday to 47,000 today. If they stay up again tomorrow I will have my catheter removed before leaving the hospital - woo hoo!! I am feeling a little "icky". It is hard adjusting to eating and drinking again and I am sure my body is still reeling from all of the meds, chemo, and oh yeah - trying to build a brand new immune system for me. But I am so grateful for the progress and to be doing so well. Thanks again for all of the prayers, they truly have been being answered!

Day +11 Made it thru to the other side

There is still a ways to go, but my white count was 1.0 (1000) this morning and my neutraphils were at 0.7 (700). When the neutraphils hit 1000, which may be this evening, I can take walks outside my room in the hallway again Yeah!!

Other big news is that my platelets went from 15,000 last night to 53,000 this morning. I guess that bag of HLA matched platelets rocked! I am also hoping it means my body is close to supporting my own platelet production.

I can already feel things healing, like inside my mouth and the raw skin around my bandage site. I ate some cream of wheat for breakfast and it stayed down ok. If my counts continue to rise tomorrow, I will be taken off of most of my antibiotics and antifungal drugs and then monitored to make sure I don't spike a fever. Once I can drink enough fluids, I will be discharged - most likely by Mother's Day, but maybe as early as Friday.

Mom is off doing a little laundry and then getting packed up to leave in the morning. I can't wait to see Brant. Well, the Demerol I get before my dreaded antifungal treatment is kicking in, so I am off to sleep!

Day +9

Oh so close to double digits! I am continuing to have longer good spells and shorter bad periods. I have basically been without a fever since about Thursday afternoon. Yesterday I was a little down but I needed a blood transfusion and also I tried to put something other than Gatorade in my stomach which didn't work too well.

I continue to get platelets twice a day which is frustrating. My numbers are hovering around 6000 - 8000, very low!! Today's platelets are "HLA matched" so we will see if they "stick" any better. So far, I have only had one transfusion of about sixteen that has made my platelet count jump significantly. I haven't had bleeding problems, so it will probably just be a waiting game again until I can make my own.

Today I have managed some pudding and 1/2 of those energy drinks. As soon as I get white blood cells and my digestive tract is repaired, I want to be ready to eat and drink so I can get outta here quickly.

Speaking of white blood cells - they were 0.2 last night and again this morning (instead of the usual 0.0 or 0.1). I realize that isn't much and that the numbers will fluctuate, but at least it is a sign of some movement in the upward direction.

My private duty nurse (Mom) has been doing great. She attended a class on light touch massage and I must say my feet smell and feel terrific each morning. She also reminds me to do the exercise pedals, the mouth washes, and my incentive spirometer (works your lungs). Today I got an admiring "model patient" comment from one of the nurses because Mom keeps me in line doing all of the dreaded tasks we are told to do.

Thanks for the outpouring of love for poor little Augie. I look forward to being home May 31st to "celebrate" his birthday with the kids one last time. According to Brant, they seem to be handling it very well. I can't wait to see Brant next Tuesday. I can't believe the time has flown by, really! It seemed like I would never make it to this point. But just like he said, one little step at a time and we will get there.

Day +7 and I had a good day...

We have been here two weeks now! Wow! And it was nice to have a day that I felt good for most of the day.

But yesterday was ROUGH and it seemed like I was in bed most of the day dealing with the fever or else the new anti-fungal treatment I started. The medicine causes severe shakes like a spiking fever so they give you demerol to control that side effect. I took it again today with much better results, and maybe by tomorrow I will be able to take it with no issues at all. This is another precautionary treatment since they haven't found the source of my fevers. But my spikes seem to be getting lower and I am resting thru the night.

Yesterday was also rough because Brant had to put to sleep our family dog, Augie. He had been sick for over two months now but we have not been able to tell why. At the visit yesterday, he had lost so much more weight and the vet found a pretty substantial mass in his abdomen which was consistent with cancer and probably causing his blockages. He was almost 13 yrs old and we just didn't feel we could go thru the surgery and uncertainties at this time, so we let him go peacefully. He will be greatly missed, especially by the kids who are already missing their normal life. Brant said they all had a good cry together last night and both the kids already told me about pictures Grammy had taken that they wanted to hang on the wall, so hopefully they are dealing well.

I am so grateful for the pleasant day I had today and realize that several of you had written to say you were specifically praying for me today. Thanks! Maybe I will have two in a row!

Day +5 Creeping Along

Today is Day +5 and the first day of a whole new month. From that standpoint I feel like I am accomplishing the march of time which is a big part of this battle. Otherwise the progress seems pretty slow.

I continue to spike fevers nightly, but fortunately so far all of the cultures and x-rays keep coming back negative and the fever drops during the day. My esophageal pain is excruciating and really impacts all that I do. Today the team jacked up my morphine and put me on a high end version of Mylanta that should help along with the double doses of Nexium that I receive.

All of the pain and wanting to just be done with this really got to me and so Mom and I had a rather emotional morning/day. It helped to get those tears out and have a pity party while still being able to see some positives that are going on. And as proof that God never gives us more than we can handle at one time, while we were feeling pretty low, the Integrated Medicine lady called and asked if I would like a foot massage. While I was enjoying that Mom opened an email from Leigh Ann that had this cute picture in it:

So we continue chugging along. The team is doing all they can to address my concerns, but it is mostly just palliative trying to get to the point of having white blood cells again. On the bright side, I started my Neupogen shots today that will encourage those white blood cells to be made. Other good news is that last night's platelets worked well in my system and I made it up over 29,ooo - so no transfusion today. Maybe they could hunt that donor down and beg him/her to give a steady stream for a few more days???

Thanks so much for the great comments and emails. Even though I haven't been responding as much on the computer. I do enjoy everything we get. You all have asked if we need anything sent up here, but I think we are doing fine. Your prayers are most appreciated.

As for back at home, Brant is back in full swing with baseball. I hope I will make it home for the end of the kids' season and see a few games. Brant continues to get a nice supply of meals from friends here and there and his mom is over often to cook and clean. Thank you for all of the love and support!!