Little packages

2/7/07 Day 28

Day two off from appointments has been wonderful. I know Chris is getting a little cabin fever. It's just nice not to be propelled along in a wheelchair racing from doctor's visits to labs and back again. That being said, I have a full day of tests and doctor's appointments tomorrow. Chris says I should talk about how unstinky he is. He was laughing when he said it. This goes without saying. I couldn't imagine my life without him and that was before the diagnosis. He is absolutely my rock and when I feel really run down, I only have to look at him to give me a reason to pick myself up again. I know that I was very lucky to find someone who loved me as much as I loved them and I'm thankful every day. Enough of the schmoopy, already.

I' ve discovered something very disturbing since I started treatment. I cannot open packages. I'm talking about things like pudding cups and individually wrapped candy. I really have to work to get a grip on the lead edge and if I really concentrate, I can sometimes open an applesauce or pudding cup. The little sealed candies are beginning to be a different matter. I can't feel my finger tips well enough to grip the plastic wrapper. If I do manage to get a good grip, I can't tear the plastic. It's like being tall enough to ride the rides, but you can't open the gate to get in. It's a very strange feeling to be defeated by plastic. The good news is that the individual Ensure bottles are sealed with a little plastic ring, so I can't open them. That's the bright side to that. If you've ever had to drink those energy/meal replacement drinks you know it's like evil cake batter. The chocolate flavored ones are the absolute worst. How do you make chocolate taste like potting soil?

One more thing: the steroid eye drops I started taking in the hospital are driving me crazy. I woke up this morning with my eyes on fire. They feel dry and raw, but I'm streaming tears at the same time. On top of that, I can't bring anything into focus, so everything has a fine white haze to it. I talked to my nurse and she's checking with the pharmacist to see if I can stop taking them. Cross your fingers and hope he says I can, because I don't like being functionally blind. I'll post as soon as I find out.

In the Aftermath of Round Two

2/6/07 Day 27

Well, it's my first day out of the hospital and I can sincerely say that the second round of chemo was worse than the first. I'm feeling very run down and expect to continue feeling this way as my blood counts drop. I still have numbness in all of my fingertips, but now there is a tingling sensation on the tops of my thumbs and first fingers. Otherwise, I am doing fine.

It occurred to me today that every conversation I have concerns a bodily function. I cannot wait for the day when I can talk to somone without mentioning the number of times I had to do something or how much of it there was. If you've ever been hospitalized, you should be able to relate.

I had to start taking steriod eyedrops four times a day in addition to all of the other medications. Now I just sound like a whiner. :)

It was really wonderful to see Tina and Joe this weekend. I really enjoyed catching up and it was just nice to be around them.

Chari and Steve came out our first time out of the hospital and it made a world of difference to see friends from home. I keep promising to post a picture of the hat so here goes. All of my friends at work (and Marisa, my lion buddy) that signed the get well hat, it means a lot to me.

That's it for now.

Round Two Down

2/5/07 Day 26

Ann got released from the hospital today, and that marks the end of chemo round two. She may not look excited in the pictures but she really is despite the lack of energy.

Her WBC which started at 54 K/uL (thanks Neupogen) at the beginning of round two has dropped to 6.7 K/uL as of this morning. Her LDH numbers are dropping proportionately as well. The differential counts of her blood look, well not good but they look a lot better than they did when she came to MDA for sure. We have not gotten a pathology report on the last Lumbar Puncture (LP), but the Doctors seem to think that if the last two were clear then the others will be as well.

We are scheduled to see a Gynecologist next week to discuss weather or not the chemo will have a permanent impact on Ann. It makes both of us very sad to think that we might never have kids. Of course if we could see the future we would have married sooner and started right away. I mean seriously who expects to be diagnosed with cancer in your early thirties? Middle age or in the twilight of life, ok sure, but not at 32!

I had a long talk with a case manager at the insurance company today about what is going on. Still no word on the status of the BMT, though she did promise to find out for me. It would be nice if MDA would get the go ahead from the insurance company to start screening all the donors, and get all of that lined up before the chemo is finished.

I know it doesn't show in the pictures but Ann has begun to loose muscle mass, especially in the legs. I'm going to see if there is a physical therapist in MDA that we can see and maybe schedule her in a class that moves at a pace she can keep up with.

Almost Through Round 2

2/4/07 Day 25

Here we are more than half way through the 2nd round of chemo and a quarter of a hundred days since Ann was diagnosed. We have been told that Ann will be getting out of the hospital around lunch time on Monday. This is good news as I have been missing her terribly and having trouble sleeping without her.

Taking care of her when we leave the hospital will be a challenge as I expect her WBC count to continue to drop after this round of chemo, until she is at or almost at zero. I am paranoid about her catching some small and stupid disease that will finish her off even before we get to the bone marrow transplant.

Speaking of we have been scheduled to take an EKG on the 8th for the insurance company. I guess this is for them to verify that Ann will be strong enough going into a transplant that she has a chance to survive. The NMDP (Nation Marrow Donor Program) also mailed some information to our house in Baton Rouge about grants and financial assistance for the procedure. I hope that we will not need to pursue that road, but I have started getting information together just in case.













Tina and Joe stopped by again for a visit before Tina had to go back to NYC. Its a shame that Ann was in protective environment and they had to wear masks while visiting. Ann had a good bit of energy and was pretty animated while they were here.

Both of us were very touched by their very generous gifts. I'm ashamed that we have not kept in closer contact with them since Tina left Baton Rouge. Ann was also tickled by the books from Caroline that they dropped off.

Ann started her thrid bag of Cytarabine after Tina and Joe left and the medicine really started to take a toll on her. She is going through hot and cold flashes and having trouble finding a temperature she can tolerate in the room.

She is also more than a little tired because she is only able to grab catnaps in between the staff coming to check on her or get her to take medicine. We counted today and she is taking 23 pills a day. We also got the word from the pharmacy that she will be restarting the Neupogen shots after she is discharged for this round.

Ann doesn't mind though she is just looking forward to getting to go back to the apartment.

Chemo Round 2 and Fake Bunny Cat

2/3/07 Day 24

One of the things that has caused Ann and me the most grief while we are at MDA is that we had to give up our cats. It is unfair that they had to suffer because of this. Thankfully we located them good homes and they are being well taken care of. Ann's absolute favorite is a black and white tom named Jay, or "Bunny Cat".

She calls him that because as a kitten he would jump like a rabbit. Jay is her lap cat and is always trying to get attention from her. During Ann's first round of chemo (Day 5) I was passing by the gift shop and noticed a toy animal that looked pretty close to the real thing and got it for her.

It's an odd truth that a hospital can be a hard place to rest, let alone sleep. This is especially true of the PE Wing Ann was admitted during both rounds of chemo so far. Nurses are always coming in and checking vitals, sometimes as frequently as ever 15 minutes, depending on the medication she is getting. Once Ann got fake "Bunny" she had a much better time getting some rest. It would still be nice to have the genuine article, but as a stuffed toy goes he is doing a pretty good job.

I need to do some more updating from yesterday. Ann got her third lumbar puncture (picture left) and we are hoping that the results of it are as good as the previous ones. The Nurse administering the test (in the picture left) reminds me of our real-estate agent in Baton Rouge. Brassy and vibrant, I think of her as a grand old dame. She likes Ann and does her best not to cause any discomfort.

One of the particularly nasty things about the disease Ann has is that it has a tendency to find it's way into the central nervous system and set up shop there. Brain and spinal tumors can follow.

A sign that this might have happened is a high level of LDH in a patent's blood when they are first examined. Ann had a very high LDH number, in the 4000's when she got to MDA. Lucky though there has been no sign of the disease in her spine and the chemo they are injecting into her spine is a precaution to keep things that way. We have a total of 8 lumbar punctures to undergo before the end of treatment.

Ann is taking Methotrexate to start off the second round of her chemo. They are checking her blood and urine ph constantly. When they reach a certain level then they are going to start her on Cytarabine. For those of you who want to know Methotrexate and Cytarabine are antimetabolites. The idea being that antimetaboties prevent fast multiplying cells from dividing this stops cancer cells from multiplying and they eventually go into apoptosis (cell death). The problem with this is that the chemo drugs can't tell the good cells from the cancer cells and so all of the cells in her bone marrow get the same treatment. However given some recovery time the good cells should recover and the cancer should die out. Notice the use of the word "should" in that last sentence.

It's about 11am now. Ann is tired and wants to sleep. Her friend Tina is coming in later this afternoon, so she will need to have some strength for that. I am going to sneak off to get some lunch.

Update 1

Tina and Joe stopped by today and Ann was very happy to see them. She is having a pretty good day and not showing much evidence of tiredness. It's also nice to see her laugh with Tina. Tina lives in NYC and it makes me wonder if NYC would have been a good choice also.

Mystery Pielet and my friend Earl

2/2/07 Day 23

The "fruit pielet" was an absolute mystery. It looked like it would just be a deep dish apple pie. When I put my fork in it, there were about two inches of brown congealed syrup and I couldn't find any fruit. When I cut it in half, there were three canned peach slices in the bottom. Is that technically a pie? I wasn't sad, it just seemed like false advertisement.

On a brighter note, Earl the toilet is back.

There is no standing water in a PPE room. It's a very high risk for people in my condition. This means that there is a stand with a bucket in it. The bucket is lined with plastic bags and you guessed it, there is a toilet seat on top. I have never voluntarily camped in my life. This is the funniest thing that has ever happened to me. The first time I went into PPE, the nurse that was showing me the room said, "You don't have a toilet." I looked at her and said, "That's ok, I'll just use the one down the hall." She just smiled, and I should have known. I thought my chemo would be outpatient after the first stay in the hospital. When I found out that I would be going back into PPE I couldn't stop laughing.

Hooray remission!!!

The Golden Ticket

2/1/07 Day 22

In the 1971 movie Charlie and the Chocolate Factory the eccentric candy maker Willy Wonka hides golden tickets among his candy bars. The finder of the special ticket wins a trip to Woka's candy factory for themselves and a guardian, and a chance to win a extra-special prize at the end of the trip. For Charlie this prize is a chance to start his life over. No longer is he a poor street-urchin, he is redeemed as the heir to the most fantastic magical place on earth.

As it happens I was in the apartment complex office the other day buying bus tokens for our trips to and from MDA, when I noticed something funny about the bag of silver tokens the clerk handed me. Hidden among them was a Golden Token. Golden Bus token or Golden Ticket!

Since then I deiced that this would be Ann's prize for going into remission. Like Wonka's fictional ticket that Charlie finds, it's a symbol of the start of a journey with the promise of a wonderful prize and chance for a new life at the end.

Ann is thrilled and looking forward to her chance to use it.

More updates later today!

Update 1

Our day started at 5:00 am this morning. I think both of us are in knots over the bone marrow and blood tests today. This should be the point at which the Doctor can tell if the cancer is going into remission or not. The consequences of it not going into remission are pretty big as I understand it.

Ann's cancer is considered high risk for a few different reasons, or combination of risk factors. 1 - she presented with a WBC over 30. 2 - her cancer is positive for a genetic defect (not the worst but still pretty bad). 3 - She is over 30 (not by much). If she fails to go into remission after this initial treatment with chemo (Hyper-CVAD) then it will add another risk factor to the list.

She said the last bone marrow sample from last week is still hurting her some so she asked me to drive to MDA today. Because I do it so infrequently now, it feels funny to drive. We got to the blood draw at the lab and then when to the Bone Marrow clinic, and waited. Our 7:30 appointment turned into more like 8:20.

I think we will have to postpone our meeting with the Doctor. The results from Ann's marrow will not be anywhere near done by lunch. I guess that means we will have a late day here again.

It doesn't bother me as I generally feel safer with Ann here at MDA than at the apartment. But I worry about her energy level and stomach. Sometimes the nausea can sneak up on her suddenly and out of the clear blue.

As it turns out the BMA clinic is not done with the samples yet and out meeting with the Doctor is postponed. So we set out to grab late breakfast. Instead of the main MDA cafeteria (nosy and crowded) we try the Waterfall Cafe in the MDA Mays Clinic Building. There Ann spots something that she thinks she might just be able to eat...the fruit "pielet".

The name "pielet" I assume was derived from its nearest direct pastry based ancestor the "Pie". The fruit filling of the "pielet" remained unidentifiably generic and I'm convinced that the two pastry's have little or nothing to do with each other. Having built up enough effort to push past the chemo induced nausea, Ann was extremely disappointed in the entire experience and actually looked very sad about it.

We returned to the Doctor's office and found that the appointment had been postponed again until 2:00 pm. Again because of waiting for test results. I would like to add that while a lot of time at MDA may seem to be centered around waiting for results, it is actually very quick. The blood test Ann took initially in Baton Rouge took the better part of a week to examine. At MDA it takes maybe an hour or two. No complaints at all!

The Nurse calls us back to the Doctor's office. This is it, and I'm very nervous. When we get into the office Ann throws up. I feel like throwing up too.

Update 2

When we get to see the Doctor, I feel like I have the worst case of stage fright ever. Not because of the Doctor. She is a intelligent, devoted and patient person. I'm worried about what she is about to tell us. She shows us the reports from Ann's blood and marrow and its good! 3% blast cells in the marrow, no evidence of residual disease, although she points out it only takes 1 cancer cell to start the entire problem all over again. Ann's WBC is high 54 k/uL but again that's from the Neupogen and will take time to wear off.

Finally she tells us Ann is in remission! We have taken our 1st step towards a hopeful new life.

Now we are expecting to go home for the night and get new appointments tomorrow but the Doctor tells Ann she needs to start the second round of in-patient chemo tonight. So instead of coming home we are told that they are working on the paper work to get her back into the Protective Environment Wing. She will be admitted to a new hospital room tonight.

Ann's not that happy, nor am I. After being so close to loosing each other we would really like to spend as much time together as possible. But we both know it's for the best and I begin making a list of things to get from the apartment and bring to her tomorrow.

Ann has had a small cough for the last day so they decided to shoot saline up her nose and have her sneeze into a cup. The contents of the cup would then be cultured to see what bug she may have picked up. The entire procedure went over about as well as you can imagine.

We got to eat diner together again before her admission and it was nice to be able to look at her face to face and give her a kiss on the mouth and cheek. Its been almost a month since we where able to do that and I'll never take that simple act for granted ever again. Once she goes into PE again for chemo I will have to wear a mask whenever I'm in the room with her and that kind of intimacy will be to risky for her immune system.

Finally she got admitted to the PE Wing of the Hospital, room G1263 at about 8:00 pm and will be there for the next 7 days while she undergoes the 2nd round of the Hyper-CVAD chemotherapy. I'm lonely without her, but I am more hopeful each day and thank God that a place like MD Anderson and the good people who work there be they Doctors, Nurses, or Anyone and Everyone on staff exists.

Oh, and just so you don't think I forgot...Ann got her Golden Ticket after all. She will have to wait 7 Days to use it but it's all hers.