From 0 to 90

Christmas Day brought good food, family fun and a few hours at the hospital waiting for my blood to be drawn and reviewed by the doctor on call. The doctor wanted me to wait at the hospital in case I needed platelets or a blood transfusion. Fortunately, I needed neither. My platelets and white blood count are very low, but not as low as they were after the initial chemo session. I just have to avoid germs and I can’t use sharp objects – like knives! Whitney, Steve and Deborah are doing all the cooking. I’m doing all the sitting.

My 90 year old mother lives at Stratford Court, a senior living community in Boca Raton. She has dementia but was thrilled to know that she was a great-grandmother. My kids thought it very important that we bring her to the house on Christmas Day for dinner. She enjoyed her few hours out of her apartment and the delicious dinner Whitney prepared but mostly she really enjoyed her few hours holding Sophia. The photo included with this blog represents 4 generations of females in my family – my mother Helen Mowbray, 90; me, years younger than my mother; my daughter Whitney, 28; and Sophia, 0 (3 months).

Constant Reminders

So many good things are happening to make my homecoming and holiday happy.

Because I am now feeling good, I forget I am recovering from Chemotherapy and need constant medical attention. The Oncology Hematologist at the Lynn Cancer Center here in Boca are taking care of me while I’m home – constantly monitoring my blood and condition and treating me when necessary. They fax the blood test results and other info to my medical team at MD Anderson so they know how I’m doing. So, each day I spend 2-3 hours at the clinic in Boca – a constant reminder that my life has changed.

Early Christmas Present

On September 22nd I became the grandmother of little Sophia Madeleine. I held her first in late October (right before my diagnosis) and was hoping upon hope that I would get to see her again over Christmas. Last night I received a letter from Sophia (in her father's handwriting) telling me she was coming to Florida for Christmas! The Letter said. "I hope you are feeling better from being sick. I know it won't be a big Christmas this syear, but I still wanted to give you a small gift - ME!!! I'm coming with Mommy and Daddy on Wednesday. I can't wait to see you! Love, Sophia."

What a great surprise. Isn't she adorable?

I AM going to have a Christmas!

Dr. Estrov told me to go home and live. I’m beginning to do just that. I feel so much better and have already gained back a few pounds. I'm actually enjoying eating. Today, Whitney arrived from New York City. Of course, it was the day of the two feet of snow in the northeast and I was worried that she will be delayed or not make it at all. Fortunately, her flight was one of the few that got out of JFK and she arrived just a few hours later than scheduled. She did have some harrowing experiences, though, like walking down 72nd Street in two feet of snow, lugging her luggage, at 5:00 in the morning, looking for a cab!

Whitney came home, we had lunch and then we start putting up the Christmas tree – something I didn’t think that I would do this year. I love putting up the tree as my ornaments represent my family’s life over the past 42 years. The ornaments bring back so many great memories. The tree is up, but there will be no presents under the tree this year. I am healing, but my blood is beginning to break down from the Chemo and I cannot go out in public places. No immune system so NO SHOPPING. That is a good thing – we have so much to be grateful for this year we don’t need to BUY presents. All of us being together is present enough this year.

Homeward Bound

Up at 4:30 a.m. and off to the airport by 5:00 a.m. John and Sue took me to the airport even though they both had to go to work later in the day. I love them so much. My flight left at 7:30 a.m. central time so I thought I would be home in Boca Raton by about 10:30 a.m. eastern time. I ordered myself a wheel chair on the advice of my friend Jaynie Smith. The Houston airport is gigantic and Jaynie thought that walking to my gate would be too much for me in this condition. I hated to, but I took her advice and was glad I did. Jaynie also used her Continental points to get me upgraded to first class. I was so thankful to be in row 3 and not in the back of the airplane. I wore a mask the entire trip and no one asked me why. I was too sick to take advantage of the hot breakfast first class offered and was happy to have the mask to mask the smell of food. The flight was great until the captain announced that we would be an hour delayed in landing because of storms in Ft. Lauderdale. After circling through the clouds we landed safely in the pouring rain – 14 inches I heard! My son Mike was there to greet me as well as my good friend Brian Neff.

After 6 weeks of hospitals, hypodermics and Houston, I was HOME!

Entering my house was an emotional experience. Of course, my amazing friends had stocked my pantry and refrigerator. Mike made me the simplest of all comfort foods – a grilled cheese. It was delicious! I hadn’t eaten in four days and was down to 118 pounds. That grilled cheese was the start of my eat-a-thon – with each meal I felt better and better.

Another Sad Separation

Today, I drag myself to the Clinic for blood work then an appointment with Dr. Estrov. I still haven’t eaten and couldn’t feel lousier. It is hard for me to focus on anything but NOT gagging. Fortunately, I’m cleared to take my early morning flight to Ft. Lauderdale even though I can’t imagine being in an airport and on a plane feeling this terrible. When I get home I’ll have to visit the local Hematologists for blood work and other care at least twice a week.

I’m also struggling with another separation anxiety. For the past 6 weeks I have been with the Ogles – John and Sue – one way or another. We’ve shared a lot of laughs and many cries. They have taken such good care of me. Even though I’m so looking forward to going home I’m sad to leave them. The good thing though is that I’ll be back in January!

Sick, Sick Sick

The last three days I’ve take Chemo as an out-patient. Thanks to Sue and John for driving me to the clinic each day as it has poured rain every day here in Houston. This round was so much harder on me. I don’t know if it was the fact that I was an out-patient and didn’t get the right amount of fluids and anti-nausea medicine, but I felt much sicker and hated the fact I had to walk through the hospital and ride back to Sue’s feeling so sick. I go home and go right to bed. I haven’t eaten a thing since Monday. I hate feeling so bad!

Hamburgers, Steaks and Haagen-Dazs – Oh My?

The first days out of the hospital were strange for me. Believe it or not just walking up steps was a challenge! Being confined to a 10 x 10’ space for 30 days takes its toll on your strength and energy.

My first out-patient visit to the Clinic revealed some shocking info. I met with the Research Nurse, Leukemia Fellow, and Dr. Estrov – the doctor who will be following my case for the next 18 months. I found out that I will be taking a total of 17 rounds of chemo – yes 17! I almost fainted. Why, when I’m in remission do I NEED so much Chemo? "To give you the best chance of STAYING in remission," they said. I’m definitely going to have to take this one day at a time. Looking forward to 17 months of Chemo is way too depressing.

And, get this, because I did so well with my first chemo and because my numbers have rebounded so well, I get to start a second round of Chemo on Monday!

Two good thing that came out of this meeting. The first is that Dr. Estrov told me I needed to eat, eat, eat! "Hamburgers, steaks and Haagen-Dazs," he said! How many people would love to get that prescription from their doctor?? The second good thing is - I can go home to Boca on Friday Dec. 18th if I get through the second Chemo with as good results as the first. Now that is something for me to celebrate!

(Re)mission Accomplished!

Today is a day for celebration! My early morning bone marrow aspiration revealed that I AM IN COMPLETE REMISSION! Now, this is not the end of My Unexpected Journey but it is the best news delivered in more than a month and news that brings hope for a future. Thanks to the hundreds of you who have kept me in your thoughts and prayers and who have sent positive energy to me. It has helped me heal and will continue to do so.

The remission news, of course, is the highlight of this day but other important things did occur - like, I WAS DISMISSED. Yes, I was sent home - to Sue and John's house and spent my first night since 11/4 sleeping in a non-hospital bed. Heaven! I thought the first thing I would do when I stepped into the house was take a shower but - no! I have to wait 48 hours after a bone marrow aspiration to shower. So, Wednesday at 11:00 a.m. is my appointed shower time. Gosh, I'm suprised anyone can stand to be around me.

Before I could be dismissed Sue and I had to attend a class on caring for my port, learning to flush the lines and change the dressing. Sue will be doing this for me everyday while I have the port in my arm (and am in Houston). I was allowed out of my room to walk to the other side of the hospital to attend the class. I wondered if I could walk that far with my IV pole and all after not walking more than 10 steps at a time in so long. After the class we had to pass a test given by someone from the IV Therapy Team. Quite a few laughs and mistakes were made before receiving the OK to go home.

When all was packed and finished the nurse sent for that white sleigh (the one that took me into the Twilight Zone) to take me to the waiting car and my first breath of fresh air in 31 days. It was emotional to say good-bye to the nurses who took care of me for so long. I'll never forget them. My next doctor's appointment is Thursday when I will find out what my course of treatment will be over the next 7 months. To date, though, (Re)mission Accomplished!

Is it Possible - I'm Sad - About Leaving?

Tomorrow I'm being dismissed from the hospital after my bone marrow aspiration to go home to Sue and John's house. YEA! I can finally shower, use a real toilet and dine with others. Why, then, am I feeling so depressed? I am beginning to realize that "protective environment" means more that just protection from germs! It has also been protection from the entire outside world full of stresses and worries. Now, on the "outside", I have to adhere to the Clinic outpatient schedule, find ways to get to the Clinic, take Chemo as an outpatient, heal at Sue and John's for a few days, fly home to Florida, see my mother, take care of my home, think about work and then the come back to Houston two week later and do everything all over again. YIKES! Yes, for 30 days, I have been totally protected. The doctors, nurse practioners, nurses and nursing assistants have been fabulous and taken great care of me every day. I will miss them all.

When Leda and Ajini came in to see me today, I started to cry and told them I was sad and frightened about leaving. They said it was quite common. Of course, why did I think I was the only one? They told me I would do great on "the outside." I know I will. It's just another giant step on this unexpected journey!

Frozen Shut

Many of the nursing staff got here late today because their cars were frozen shut after the slushy snow that fell yesterday in Houston then froze overnight. I, of course, was snug in my room looking out. Remember I'm in "Protective Environment?" Fortunately, I feel much better today. After I signed off yesterday my fever went to 102 and I felt quite louzy the rest of the day. "Just the bone marrow growing back," they said. Whew! Today, I had a special surprise - long time friends from my Middletown, OH years, Judy and Tom Tough, who now live in Dallas came to visit with me. We hadn't seen each other in 10 years - but the visit was like we had seen each other yesterday. That's the way it is with good friends. My amazing friends! The day ended sadly with the Gators losing to Alabama. It's only a football game,I told myself. June, you are here conquering CANCER! Much different, much bigger!

Let It Snow!

Today it is snowing in Houston. Everyone is excited and the nursing staff keeps coming into the patient rooms to look outside at the snow falling. They get snow about every ten years here. I’m glad to be inside looking out. I feel really rotten today with all the aches in my joints. It is hard to believe that this is my worst day as far as feeling bad. When the doctor came in I told him I could hardly move my arms. He said it was the bone marrow growing back. Well that is good news as my last bone marrow aspiration on Monday this week came back empty. I think I’m going to take a pain killer. They usually knock me out – so for now it’s over and out!

Chocolate Contraband

Today has been a down day for me. After talking to the nurse practitioner I realized I have months (7 at least) of Chemo left. It will be harder as I’ll be an outpatient and have to come to the clinic every month for 5 days to receive the Chemo then go back to Sue and John’s to recuperate for a week and hopefully be able to come home for two weeks in between. I’ll have no immunity and no platelets but will now be out in the world instead of in the hospital in protective environment. I’ll probably have to go to a local Hematologist in Boca to draw my blood every day that I’m home. If I get a fever or sick they would have to treat me.

Sandy checked into an organization called Angel Flight – a group of volunteers who transport cancer patients home and back for treatment. We are waiting to hear from them. They travel out 1000 miles. Houston to Ft. Lauderdale is 986 miles! Whew!

They did tell me though that I came through the Chemo better than any patient they have seen. I’m hoping that is a tribute to my good health and condition. I pray it continues through the rest of the Chemo. Also, my joints, especially my shoulders hurt so bad – it is hard to get comfortable. Don’t know what that is. John and Sue came to visit tonight and experienced the new visitors’ room. Now that this department moved back to its original floor visitors stay in a small room with a window and talk by telephone! Sue was still able to smuggle some contraband to me – delicious chocolates and caramels. Yum!

The List

Day #23 – My platelets jumped to 94 (normal begins at 140 and goes to 440). My white blood cells have elevated to .5 but need to go up to at least 5. I’m hoping for a bigger jump for tomorrow. The new TV’s still don’t work in our new rooms so reading and surfing the internet will take up my time and talking on the phone. I don’t know how I would get along without the phone.

I thought you might like to see FYI a list of things I HAVE NOT DONE in almost 30 days:

• Taken a shower (yep, there are germs in pipes and in standing water, so no showering - sponge baths every day. I'm going to need a full body exfoliation when I get out of here!)
• Used a toilet (the worst! many germs are released when you flush so we go on pots with bags that are then examined and weighed - eeeeewwwwwwwww!)
• Worn a stitch of underwear! Nothing more to be said here.
• Shared a meal with another person (while I can have visitors they cannot remove their masks in the room and therefore cannot eat in my room)
• Used any sharp objects like a razor or toenail clippers (with platelets so low even a small cut or bleed could be disastrous)
• Walked more than 8 steps before having to turn around (in this 10 x 10 foot room with furniture it is hard to get your heart rate up even with pulling your IV pole.) I do have a little bike simulator that I sit in a chair and peddle several times a day.
• Gone to bed without side rails up and bed alarm on! (Even if I sit up to get a drink of water the alarm goes off and the nurse comes running in to make sure I'm OK. Again a fall or bleed could be devastating.) We laugh about it now.
• Stepped one foot outside these four walls. One day my daughter held the door open when she was leaving so that I could look out to the nurses station. We felt like we were misbehaving

Movin' On Up

Day #22 – My new doctor is Dr. Cortes. He seems nice. My platelets have jumped to 65 another piece of good news. The bone marrow test indicated that my bone marrow is still empty. Not good or bad result. We will do another next Monday and then I’ll be dismissed to go to Sue and John’s house. He said at least my marrow was not full of Leukemia cells. Yes, I’m grateful for that. Tonight we moved to a new floor – to where the protective environment floor had been two years ago. It was quite a procedure. The visitors have to stay out of the room in a small glass room and talk to the patient via telephone. It will be really difficult for the visitors. I’m glad I’ll only be here another 5 days or so.