4 Months, 8 Days, 7 Hours and 55 Minutes . . .

. . . time elapsed since working IN my office at the South Florida Manufacturers Association (SFMA). The front door opened with the same key, the building smelled the same, sounded the same and my office looked the same (neater though)! Are you sure I wasn’t here just yesterday? Those 4 plus months passed very quickly. Anyone out there who can make the next 13 months pass as quickly? The impetus for going into work on this particular day was to attend the SFMA monthly board meeting, my first in 4 months! It was extraordinary and emotional to see my colleagues after such a long time – the same colleagues who have been supporting me during my unexpected voyage. Their support is one more thing for which I am so grateful. I went in at 7:00 a.m. and stayed until 2:00 p.m. Came home and fell right to sleep! I hope to spend many more days IN the office and visiting members while I’m on Chemo Lite! My blood work on Monday will reveal whether going IN to work is a good idea or not. Remember, Dr. Estrov says, "Go home and LIVE." That’s what I’m doing!

Going Down

The good news - I’m feeling great! The bad new – my numbers are going down (platelets 43, WBC 1.4)! This is NOT unexpected, but I still experience disappointment. I’m going to go with the feeling great part, though, and go home and work. Lots to do before the March 24th banquet. I’m so happy I have the mental capacity to work! And, I can work in the comfort and safety of home sweet home.

Daily Activities

The last words Dr. Estrov says to me before I leave Houston and come home to Florida is, “Go home and live!” He puts no restrictions on his patients and tells them to do all they feel they can do. He even told me to go golfing with my friends – ride in the cart, enjoy the camaraderie and weather, pitch and putt. I can’t drive because of the pic line I have in my arm, but I can and will do what he said re golf. I filled this day with normal daily activities like working. I find I CAN concentrate. The day was capped off by attend Book Club - an activity that I have participated in once a month for almost 7 years. Simple things are so precious.

Still OK

My blood work today revealed that my numbers are still OK – going down, as expected, but still high enough to feel good and not require any transfusions. Day 12th last month I had already had 10 transfusions and felt terrible. If you could see my face now you would see me smiling. I walked two miles today and am enjoying a visit from my dear friends All and Jack Irwin. Like Maria last week, Ann and Jack came to help me recover – we are all happy I’m not sick!

Six Degrees

I’m still feeling good and am happy to be concentrating on work. The SFMA Annual Recognition of Excellence Banquet is this month. I’m thrilled I can lend a hand with the preparation for that event. It is always emotional when I talk with colleagues I haven’t spoken with in 4 months. When I spoke with Lou Chiera, President of Winner’s Awards Group (where SFMA gets their awards), he told me about a friend of his in New York who had the same thing happen to him. Feeling great – on vacation – has a leg pain – and the doctor tells him to get to the hospital immediately because he has Leukemia and needs to be treated immediately or “he will die!” His life changed immediately, just liked mine. That man is Attorney Richard B. Herman who appears on CNN every Saturday and the Nancy Grace Show from time to time. Lou gave Richard my phone number and he called me today! Two people who would otherwise have never met are suddenly kindred spirits because of an illness they share. Richard is a year out. He is in remission and hoping to try his first case in a year next month. I hope to meet him on his next visit to South Florida. What a great surprise! Every day brings something new. A new friend! Another blessing!

I Vacuumed Today. Hooray! Hooray!

I know you are all probably saying to yourself, “What the heck is she talking about here? She vacuumed today, big deal!" Well, there are three important revelations here. First off, I CARED that there was dirt and crumbs on the floor. Second, I had the STRENGTH to push the vacuum. Last month I tried to vacuum and I couldn’t push it for even two passes. I got out of breath just carrying the vacuum to the carpet. And, third, I FEEL BETTER today than I have on any day since October 2009! Hooray Hooray!

I realize that this euphoria could go south at any moment but I have learned in these past few months that it is important to celebrate all triumphs - large AND small. So, today I'm celebrating vacuuming! By the way - this lesson doesn’t just apply to people going through Chemotherapy. It applies to everyone! Celebrate often and bring joy into your life every day!

For a Minute - All Seemed Normal

What is with this weather? It was 47 degrees this a.m.! Way too cold for the tropics. It was sunny though! I drove myself to the Drs. office this morning in my own car, opened my sun roof, felt the sun on my face, stopped for gas – I actually felt somewhat normal for those minutes. It was a good feeling!

My blood work this morning showed that my counts are still OK with platelets at 105. And, I feel so much better.

Travel Day

Up at 4:45 a.m. central time to make the 7:25 a.m. flight home to Boca. Fortunately I’m feeling better this time. My friend Maria Norton picked me up from the airport. She’s staying with me for a few days since I had such a hard time recovering last month. It is always so good to come home.

An Early Morning

7:15 a.m. was my scheduled time for blood work. They work all hours here at MD Anderson! I’m anxious to see what 5 days of Chemo has done to my blood and if I need a transfusion before I fly home tomorrow. Remember last month they told me it was dangerous to fly with very low platelets - that I might bleed in my brain or lungs!! Well nothing to worry about this time as my platelets held strong at 109. Dr. Estrov says all is well and to go home and live. Checked out of the hotel and spent the last night enjoying dinner with the Ogles.

It's a Wrap!

Round 4 of my Chemo Protocol is now in the books, finished, HISTORY! Only 13 more Rounds to go! It is crucial for me to keep focused on what I have completed rather that what is left to complete. Otherwise I’d surely shoot myself (just an expression!).

After five sessions I’m still feeling OK and have continued eating and drinking. Tomorrow I have my blood work and meet with my doctor. I’m hoping my numbers are not so low that I need to have platelets before I fly home. Remember last time they told me my brain might bleed if I flew with my platelets too low! Geez! Anyway my blood work is scheduled for 7:15 a.m. so if I need blood products they will have plenty of time to schedule it.

The Ultimate Goal

I didn’t sleep much last night. I woke up today feeling anxious. I don’t know why, as the Chemo Lite is going really well and I physically feel pretty good. I can tell, however, that the Chemo is beginning accumulate as I don’t feel as good today as I did yesterday. Friends Judy and Tom Tough came back today to visit for a couple hours. Their visit lifted my spirits and took my mind off what is really going on here. I felt less anxious when they left. My Chemo was scheduled for 3:00 p.m. I was finished by 5:00 p.m. It is amazing how quiet it is here over the weekends. 4 down 1 to go for this month. Each treatment brings me one day closer to a CURE – the ultimate goal.

3rd Day of Chemo Lite

Still feeling good! Friends Judy and Tom Tough who now live in Dallas – came to see me today at the Hotel. Their daughter lives here in Houston. It was great to see them. It was good for me to have such a pleasant diversion, too. Chemo was scheduled at 3:00 p.m. and they took me almost immediately. It is much quieter here on the weekends. I was back to my room by 4:30 p.m. WOW! I bought some Haagen Dazs (smallest container) to bring back to my room for later consumption! Yum.

Still Thrilled!

Today my Chemo is scheduled for 6:00 p.m. Isn’t that an exciting Friday night activity? Getting Chemo? I have been in the hotel all day so I decided to leave early and take a walk on my way over to the Infusion Center. The hospital’s quiet, not many people milling around, I’m thinking I’ll get in and be out by 7:15 p.m. I mean, it’s Friday night! How many people will be waiting for Chemo on Friday night? Well, refer back to where I talk about Cancer and Chemo not keeping to set schedules and convenient routines and you will come to the conclusion that LOTS of people are having Chemo on Friday nights!! What better time would there be?

Yep, I get there early and I’m the last of 13 waiting. So I sit and I sit. I completed the entire crossword puzzle in the new AARP Magazine (I cheated a little to get it done). I’m now the last person waiting. Its 7:15 p.m. my previous ETC (estimated time of completion) and I’m still in the waiting area. Finally, the nurse comes out and by default – I’m called in! I mean, unless the nurse wanted to take in the janitor who is picking up used coffee cups and already read newspapers – I’m the only person left! I have already pre-medicated with my own anti-nausea medicine (just in case). Once in the bed I’m quickly hooked up and the chemo is flowing…..I’m still feeling OK. I’m able to concentrate on my book and before I know it the hour is up. I’m done! And, I feel hungry not sick. Signs all over the hospital say it is important for cancer patients to celebrate small successes (we all should do this really, not just cancer patients). So, I walk back to the hotel celebrating the fact that I am NOT sick. I’m still thrilled that this Decitabine is all that it’s cracked up to be!!

PS - I am going to try and update every day even if it just a sentence or two. So many of you write and ask why I have not updated in a week or two so I'm going to TRY! I'm thrilled so many people are following "My Unexpected Journey." Thank you!

Hooray! Decitabine!

Did you ever think that I would be cheering a Chemotherapy? Well, guess what? I am! Today marks my first round of treatment with a lighter form of Chemotherapy – Decitabine. From here forward I’ll refer to Decitabine as Chemo Lite!

As mentioned earlier in my blog I’m on a research study which has established my protocol (treatment) for AML at 17 months! This is a very long time for any cancer treatment, especially considering the patient (me) is in remission. Why are they doing that? Well, I asked my doctor here at MD Anderson, Dr. Estrov. Here is what he said (paraphrased). Leukemia in children is 90% curable. When they started studying this success, the researchers discovered that it was because of the length of treatment that the disease was being cured. In children they treat for 2 years or more and in 90% of the cases the patients are actually CURED. In adults, that was not happening because the adults could not tolerate that length of treatment. Adults cannot/do not recover as fast as a child and were actually succumbing to the disease. .

The research study I’m on is combining Chemotherapies (strong and lite) in an effort to lengthen the treatment (while keeping the patient alive!) with the goal of completely eradicating the disease. So for me – after 3 rounds of the strong treatment (that put me into remission but made my body and spirit so sick) today I started my first three rounds of Chemo Lite!

After blood work, a visit with the doctor, I’m scheduled for infusion at 4:30 p.m. At 6:00 p.m. I’m still in the waiting room – blood pressure, anxiety and the irritability factor are all skyrocketing. I hate this so much I just want to get on with it and having to wait.....! Finally I’m called in. With this Chemo they do not pre-medicate with anti-nausea medicine. WHAT?? I was very worried when the nurse told me that. You know me and throwing-up! I dug into my purse to find anti-nausea pills that I carried with me and took one, just to be sure! OK, it’s starting and I’m really not feeling much except my nerves (maybe time for Xanax instead of anti-nausea pills?) I’m half way through and I feel a hunger pang! Could it be? Everyone was telling the truth and it won’t be as bad? I won’t be going right to bed, curling up in a fetal position for the next 12 hours?

In an hour I’m done! I feel OK! I can walk to my hotel room without worrying about throwing up somewhere along the way. In fact, I stop by the hotel deli and order a sandwich which I ate in my room watching the Olympics. I feel like I’m in heaven. I just had Chemo, I feel good enough to eat and enjoy what’s left of my evening.

Hooray! Decitabine!

Travel Day

My flight out was uneventful. My friends John and Sue are Tennessee at this time because of a very happy occasion in their lives – a new grandson Jacob Lee Croft – son of their daughter Megan and her husband Stacey.

I’m staying at the Rotary House, a hotel owned by MD Anderson and attached to the hospital. I miss seeing my friends but it is good to be in walking distance to my treatments. And, I spent the first day here with John and Sue’s other daughters Lindsay and Tracy and their families. Once again I want to mention how grateful I am to be in a town where I have not just friends, but friends that are family!

I Xanax-ed!

Why now? I was feeling anxious today about my numbers staying up high enough for Chemo, about staying in a hotel without my friends around, and about this new chemo I’ll be talking. What will it be like – what will I be like after I take it? All unknowns. I get nervous traveling on vacation so with all these added distractions I was feeling very anxious to say the least. I thought OK, now is a great time to see if this little pill everyone speaks so highly about really works, so I took one in the middle of the day. No negative reaction. Maybe it took the edge off my anxiety, but I didn’t fall asleep or act crazy so I would feel free to use it again when I feel a mental meltdown coming on.

I got so many reactions from that blog. Most of you said, “Take the damn pill!” My friend Jim Leogue said that my hesitation to take the Xanax is typical D personality. D’s feel they can control the situation on their own and don’t need aid!! Sound familiar?

By the way - I finished World Without End today! All 1013 pages!

The Final Numbers

Today’s blood work will reveal whether or not I’ll be able to go to Houston for my schedule treatment. Round 4 has already been delayed three times and I’m hoping it is not delayed for a fourth. The phlebotomists at the Lynn Cancer Center are so nice and share in my hope for higher blood counts. These folks have become part of my family. I see them three times a week! My WBC was 1.4 and my platelets were 93 – not high but high enough to return to do it all over again! Now I can go home and pack for my trip on Wednesday.

The Visitor

Today I was given a very special treat. Matt Green came to visit me! Who is Matt Green? Matt is the son of my long time friend and traveling companion Claire Green. Claire and I were neighbors and friends in Monroe Ohio a northern suburb of Cincinnati. Matt and my boys, Stephen and Michael, used to wreck havoc in the neighborhood. Matt is all grown up now and a physician. He volunteered to serve in Haiti for the week and on his way back through Ft. Lauderdale he was able to stop for a few hours and visit. The Green’s and the Wolfe’s have such a special bond even though years went by and we did not see each other. I can’t explain it – it’s just great happening.

I'm Scheduled

OK, I’m on my way to Houston next Wednesday. No more changes. I’m actually looking forward to this round of Chemo as I have been promised it will be much easier on me as they are using a different drug for the next three months. I asked for that in writing! Still waiting.

From Meeting and Manufacturing to Platelets and Petechiae!

My numbers ARE trending upward but they are walking! I want them to gallop! Platelets today are at 41, not good enough, so Dr. Estrov has postponed my return to Houston, once again, to Feb. 25! Grrrr! Just a few months ago my days were filled with meeting and manufacturing. Now, it’s platelets and Petechiae. What?? Who would have figured! (I finally looked up the spelling of Petechiae which I have been spelling Petecci – those red spots that you get when you have low platelets. Sometimes I’m covered in them.)

An Up-rising!

Finally on day 29 there is definitely an improvement in my blood. Platelets are up to 20 so I will not have any transfusions today. Dr. Estrov was VERY encouraged and asked that I return to Houston for an appointment on Feb. 23 and round 4 of my chemo. Best of all I feel so much better! And, I have yet to Xanax!

Giving the Gift of Life

Today The South Florida Manufacturers Association (my employer for 25 years) held a blood drive in my honor. It touches my heart to see so many people come out to support me on my unexpected journey and to give “The Gift of Life” to so many others. That day 9 units of platelets and 72 units of blood were collected at 3 sites – SV Microwave in Palm Beach County, B/E Aerospace in Miami Dade County and McNab Executive Center (SFMA office) in Broward County. Previously at Royal Concrete 14 units were collected and at Hoerbiger Corporation of America – Houston 17 units were collected. The Houston units were given directly to MD Anderson.

All totaled – 112 units of blood products were donated so that others can live. Just to give you an idea, to date I have received more than 40 units of blood products and I’m not even ¼ of the way through my treatment! Thanks go to the companies who sponsored these blood drives. Special thanks goes to all the donors and all that came to donate but couldn’t for some reason. Special special thanks goes to Barbara Smith, SFMA office manager who arranged it all.

My amazing friends and colleagues - you mean so much to me!

Wishful Thinking?

Today showed a slight trend upward. Is it just wishful thinking? I know I had platelets on Monday and red blood yesterday, but my platelets at 13 are higher than they have been in a couple of weeks. I feel much better because my hemoglobin is 10 rather than 7. My spirits are lifting. . . .!

Whitney's Birthday

The good part of this day is that February 8th is my daughter’s 29th birthday. Whitney is such a joy in my life – I wish I could give her a hug and make her a homemade dinner on this special day. She lives in Manhattan so I’ll have to give her a virtual hug and make the dinner at another time but it's the thought that counts, right? Happy Birthday Whitney!

The bad part of this day is – yep, you guessed it, more low blood count numbers! WBC is 0.4 and platelets are at 6. Sigh! That means two units of platelets this afternoon and two units of packed red blood cells tomorrow. I had the highest of hopes that today would be the day for higher numbers but I knew in my heart it wouldn’t be. Why? Because I still feel the same – my tongue is so sore, my bruises are still dark and my attitude still stinks! It looks like my return to Houston next week is in jeopardy.

Since I have very little power of concentration now (even less than normal blondes) – I decided to start a very lengthy book, with lots of plots and characters to see if I could read such a tome. After all, I have lots of time – sitting in the infusion chair on a benedryl buzz waiting for the platelets and blood to drip into my arm! I chose World Without End by Ken Follett. Whitney gave me a signed copy Christmas of 2008 and I had yet to read it. 1013 pages. I’m starting today!

To Xanax or not to Xanax? That is the question.

Today I decided to do nothing but lay around – to relax all day and try to trigger my blood to start regenerating. It’s day #23 and so far nothing! I feel all achy. My cousins Nancy and Tina called say hello and see how I was navigating though my difficult voyage. I always laugh when I talk with them no matter how heavy the conversation. Tina spent time trying to convince me to TAKE the Xanax that was prescribed for me three weeks ago, which I finally filled yesterday (she calls it vitamin X and thinks that everyone should have iit in their cupboard). I mean, how many mental meltdowns do I need to have before I accept “help” in trying to get my head around this situation I’m in? I’m certainly not doing a very good job on my own, am I?

When my son Steve called today I told him how useless I felt and how I can’t get anything accomplished. He said to me that because I’m expending so much effort trying to get well (60%, 70%, 90%?), I only have a small amount of effort left to expend on other things. That’s why things fall through the cracks or don’t get done. People ask me how many books I’ve read or how many movies I’ve watched or how much work work I have done. The answer is ZERO. Is it no time or no ability to concentration or both? Am I trying to figure out something that really can’t be figured out? I am struggling!!

Pic Perfectly Placed

Its day #22 and I’m so hoping my numbers will show some recovery. I’m hoping, yes, but my gut tells me recovery hasn’t started yet. The blood work proves my gut feeling was right. My platelets and white blood cells are low, low, low! It’s just hard to shake this one off. Transfusions are scheduled for this afternoon. They ordered two units but the hospital only had one. One is better than none!

The transfusion ends up being very unpleasant. There was confusion about my pic line and the facility not having a copy of the original x-ray indicating where it was placed (well it was done at MD Anderson). I called Jennie at MD and within two minutes the report was fax to the nurses’ station. Modern technology – I love it! I was happy and ready to have my transfusion. I have already been medicated and am lightheaded. But, that was not to happen so easily. “Was it really installed properly, they asked?” Huh? Mind you we have been using this pic line for 10+ transfusions at this location! A chest x-ray was ordered STAT to verify the location. So, instead of using that pic line I was stuck in one of my already black and blue veins and the transfusion was given directly into the vein. Once again, I begin feeling “funny”. Am I having a reaction to the platelets or is it anxiety? I make it through the transfusion. They tell me the results of the x-ray are not yet available so to call on Monday to see if my pic line needs to be adjusted!

This whole incident was upsetting to me and painful! It could/should have been handled so much more delicate and with the patient in mind (me). I’m shaking so when I get into the car and get right into my bed when I get home. I wasn’t home 10 minutes when the nurse called to tell me that my pic line was perfectly placed! Grrr!

The Eyes have it!

My eyes look even more horrifying today than yesterday. At 7:30 a.m. I left a message at my Ophthalmologist hoping to get an appointment ASAP. Fortunately, the receptionist called be back as soon as the office opened and I was in for 11:00 a.m. Whew! It was some kind of allergic reaction on the outside of my eyes. No infection was IN my eyes. The treatment? $60 (my co-pay) eye cream in a tube half the size of my little finger! Picture this – June walking into CVS in huge sunglasses and a mask! People got out of my way and I got right to the counter. The prescription was ready at 2:00 p.m. I put it on my eyes and by evening my eyes were already better. Miracle cream, really!

Where is it?

As soon as I awoke today I knew I was headed for a mental meltdown. I had to be at the doctors at 8:00 a.m. for blood work but my eyes were so swollen it looked like I had been on a 3-day crying jag. And, trust me, if I have to LOOK like I’ve been on a 3-day crying jag I better have HAD that 3 days of crying!! My blood work is still very low and I’m scheduled for 2 units of platelets (now totaling 9) in the afternoon. Today is day 20 of Round 3 of Chemo. The last two Rounds I recovered before the 19th day! WHERE IS IT?? My recovery is one day late!

I had a few hours before heading over for the transfusions so I decided to write to my Leukemia Research Nurse at MD Anderson, Jennie Feliu, about my doubts and fears. She wrote me the most thoughtful and informative response.

Hi Ms. Wolfe - Please don’t feel discouraged. Everything you are experiencing is normal for this treatment. I realize you had a much easier time of it the previous course, but every course can be different. Although, I’m sure it doesn’t feel like it I still think you are doing well. There are many patients who are in the hospital with infections every cycle. Mouth sores are common (try swishing with baking soda and salt), needing transfusions are common, and counts taking longer to recover are common. I would anticipate it taking a few more weeks to recover and would not be alarmed by that. Some patients do not recover for 6-7 weeks. I will need to see the counts next week and discuss with Dr. Estrov then if he wants you to return on the 15th or delay your return until counts recover more. They need to be higher to give the chemotherapy and I don’t want you to make a wasted trip.

I realize my words may not be helping your discouragement, but please hear me when I say everything you are experiencing and feeling is normal. There is nothing in the below information that concerns me, unfortunately it is all part of the deal with chemo. I also realize that it is much easier for me to say all of this to you, as I am not the one going through it.

Hang in there!! The sun will come out again. Jennie

Oh please help me to heed her words!

Getting my 2 units of platelets this afternoon was very unpleasant. I cried the entire time (have no idea why) and thought that I was having a reaction to the second unit (hard to breathe, tingly, etc.). My nurse felt I was having an anxiety attack and encouraged me to get the Xanax prescription filled that I’ve had for two weeks and USE it!

As Sandy pulled into my driveway to drop me off, a beautiful yellow and white flower bouquet was on my door step. It was from my cousin Nancy – who was reminding me how good I am at making lemonade out of lemons! The day ended well!

Still Stuck on Low

Today my blood work had a small up tick. Unfortunately they related it to the platelets that I had received late yesterday. No transfusions today but I’m scheduled to return on Wednesday. I am covered with peticci (those red spots that indicate low platelets) and I have the worst sore on my tongue. I struggle to swallow let alone eat. My goal each Round is to get back to 125 lbs. In order to do that I have to eat lots. The tongue sore limits my eating and I need to drink all my liquids with straws.

The day ended well as I attended Book Club for the first time in 3 months. It was great to do something “normal” and enjoy it. Seeing all my friends was uplifting.

One after the other!

The rest of this week has been spent at the doctor’s office or in the Outpatient IV Therapy Department. To date in Round 3 (through day 17) I have received 7 transfusions – 5 platelets and 2 red blood cells. (During Round 2 I didn’t have one transfusion!) Weekends and Holidays always pose a problem receiving transfusions. You have to go the ER – sign in – go to lab – wait – then be admitted if a transfusion is called for. That is what happened today. Got to the ER at 8:30 a.m. went through the process of getting transfused and left at 4:00 p.m. What a way to spend a Sunday. Fortunately I had a friend who stayed with me throughout the day.

It took all day. Sigh!

Janet (another amazing friend) picked me up at 8:00 for my blood and platelet appointment. When we arrived they told us it would take at least 6 hours to receive two pints of blood and one pint of platelets. UGH! Fortunately, Janet was able to go home for that time and get on with her life! She came back around noon to bring me lunch. She called me stubborn when I didn’t want to eat (is that a surprise to anyone?). She knew I needed the nourishment. It is a struggle, however, to eat through the mask I have to wear. I don’t enjoy the meal at all. So, I took a few bites and took it home to eat when I can enjoy the delicious sandwich she brought. Yes, it took until 2:30 p.m. for all blood to drip into my veins.

Hopefully, I'll feel better in the morning.

No golf on Saturday

More blood work today then an appointment with Dr. Koletsky. They took the blood from a finger prick which today yielded enough blood. The Phlebotomist brought the report to me saying that it had to be redone as the numbers were just too low and probably a mistake. Very disheartening! I knew they were true and not a mistake – WBC .2 and platelets 8. My red blood count was very low as well at 7.6. This figure explains my couch potato-ness. I literally have no oxygen flowing to my cells, making me tire at the slightest exertion. Dr. Koletsky confirmed my suspicions and scheduled me for two pints of packed red blood cells and one pint of platelets tomorrow morning. It makes me scared to come home.

I guess golf is off for Saturday!! Dr. Estrov told me to go home and LIVE. Golf is part of living for me. I thought I would be well enough to try and play on Saturday. Wishful thinking. But, there is always next week.

The Biggest Buzz!

I'm scheduled in the outpatient department of the Boca Raton Community Hospital for Platelets at 3:30 p.m. – preparing for the weekend. Since there are sometimes allergic reactions to blood products it is customary to get Tylenol and Benedryl before the products are delivered into the patient. In times past when I got platelets I was already hooked up to an IV and the Benedryl was put into the IV line and disbursed slowly rendering me lightheaded and tired slowly over 5 minutes or so. Today, the nurse put the shot directly into my pic line (which go directly to my heart) and I was rendered useless in one second flat. The drug went right to my heart then right to my head and I got the biggest buzz of my life instantly! Some people might like that feeling but I don’t. I had to stop talking for awhile as I was making no sense. It only takes about one hour to get platelets so I was out of the clinic before 5:00 p.m. Sandy drove me home to relax on the couch (I have become the biggest couch potato) for the rest of the day and night.

My Mental Meltdown

Today, I wake up feeling OK, but not great. What are my blood numbers, today? I wonder. I give myself my next to last chemo shot and blood spurts out everywhere and I struggle to get the bleeding stopped. My numbers must be really low as this has never happened to me before. I begin feeling dizzy and weak. Is this mental or physical? I have an appointment to get my blood work done but I think that I need more – I call and get an appointment with Dr. Koletsky’s Nurse Practioner Sandra at 2:15 p.m. Sandy Blake drives me to the appointment. They can’t get any blood out of my finger tips so they stick my vein. Off I go to the treatment room as I’m feeling really bad. By the time I get to the room Sandy notices that I’m bleeding onto the floor from my vein stick. Yikes! The phlebotomist stops the bleeding and cleans up quickly but my mental state is spiraling downward. NP, Sandra comes in and checks me out. I’m doing OK and in fact my numbers were not as low as I expected. I can tell she feels bad that I’m struggling mentally so today. She is so nice! In the end, I’m scheduled to receive a pint of platelets tomorrow to prepare myself for the weekend. It is always more difficult to get blood or blood products over the weekend. I go home feeling better but Sandy insists that someone come over for the evening to keep me company. Cheryl fills the void. Cheryl is single and lives alone, too. We talked about the advantages and disadvantages. Now, I’m feeling even better. Thank you Cheryl.

I have lived alone for many many years and always loved it. But, for the first time in all those years I question my situation (not that I can change it, mind you). What if I really need help? Will I be able to call for it? Should I arrange for someone to be with me the first few days back from treatment? I still struggle to admit just how sick I really am. How can I still be in denial? It’s been over two months since my diagnosis! So many of my friends would pitch in – why is it I hesitate to ask?

Homecoming!

I love coming home – even though it means getting up at 4:30 a.m. to get to the airport by 6:00 a.m. or so for the 7:17 a.m. flight and it means saying good-bye to John and Sue. One of the good things about this terrible situation is reconnecting with my dear friends after 29 years!

I have learned to check my bag and take a wheel chair as the Houston Airport is HUGE. Again my amazing friend Jaynie got me upgraded to first class, seat 1E – the first seat in the plane. And, checking in and taking a wheelchair is made much easier if you have the elite status. Thanks Jaynie!

I’m a little on edge regarding the low platelet situation – what my mind can do to me. Will I be asking the man next to me if blood is coming out my eyes or ears? Hope not. And, I sure he hopes not! All goes smoothly (no bleeding, whew!) and Mike is there to get me. My bag is first on the baggage belt with a big tag that say Elite Status! Thanks again, Jaynie.

My house welcomes me home. It’s sunny and warm. Nancy comes over and brings me lunch. I feel OK and relax the rest of the day.

Can I fly home?

Back to the Clinic today to get approval to fly home tomorrow to Florida. Blood work comes first then appointment with Dr. Estrov. The blood works shows that my platelets are very low – low enough for the doctor to have concerns about me flying home. Evidently, if your platelets are too low the pressure of flying can cause bleeding in your brain and lungs. Yikes – thanks for telling me! So, before flying they want me to have a pint of platelets. Unfortunately, they can’t get me scheduled until late that night. For me, just stepping into the area where they give me my Chemotherapy makes me immediately feel nauseated – even though I’m only getting platelets. Mind over matter/mind over matter. How does one control that?

Sue arrives at the hospital about 6:00 p.m. and we are finished by 8:30 p.m. John is home preparing chicken and mashed potatoes. I’m actually feeling hungry!

A Day of Rest

Today I have nothing to do but relax and eat. Success on both fronts.

Home to Bed - twice

Saturday went as expected. The chemo made me feel sick – I went home (to the Ogles) and right to bed. Stayed there until the next morning when it was time to go back for another dose. Today I was really sick. The nurse called for more anti-nausea medicine. What they were giving me was not keeping me from getting sick. Again, home to bed.

In remission or out – that is the question?

Sue takes the day off so that she can go with me to find out the results of the Bone Marrow Aspiration and whether or not I’ll get to start Chemo today as planned (I hate straying from The Plan). We wait and wait. Finally we see Dr. Estrov walking down the hall. I call out to him and he has us follow him into a closet like room to talk in private. I’m pulling on his lab coat asking. . . is it good news – is it good news? He turns around and says, “Its good news. You are STILL IN REMISSION! But, something is destroying your platelets. Let’s hope it is the heparin.”

Can I start my Chemo today as scheduled? Yes, I get to start my chemo but I’ll be starting at a very low blood count point. My platelets are 35 and my WBC is 1.6. Last month when I started my second round, my platelets were 650 and my WBC was 5.6. They arrange for the Chemo but can’t get me a slot until 7:00 p.m. We go to Sue’s daughter Lindsay’s house to spend the next 5 hours. I got good news today at the Clinic and now I get to hold Walker again. I feel calm for a few hours. I hate chemo and to have it so late at night – the worst.

Good and Bad!

The good today is that it is my oldest son Steve’s 35th birthday! Happy Birthday Steve! I have enjoyed all 35 years with Steve – maybe not every day of all 35 years, but almost every day!

The bad is that my blood work this morning showed that my blood numbers continued their downward trend. Dr. Estrov is concerned. In order to continue with the planned Chemotherapy I have to have an emergency bone marrow aspiration (BMA) – to determine if I have fallen out of remission. Fallen out of remission? How could that happen so quickly? I feel and look so good.

Dr. Estrov is 99% sure I’m STILL IN REMISSION, but the bone marrow aspiration is a must do to confirm. He feels my platelets are being destroyed by the heparin I’m using to flush my pic line that I’m flushing every day. No more heparin until we find out. “In Leukemia, there are mysteries every day," says Dr. Estrov. “This is just one of them.” I’m, of course, in tears! The doctor jokes that he may have to start an IV to replace all the fluid I’m losing through my tears. I laugh. My research nurse Jennie tells me to listen to Dr. Estrov and BELIEVE that I have a 99% chance of still being in remission. Easier said than done, but I try.

So, up I go to have my 5th BMA! Terri, the Nurse Practioner who performs the aspiration, echoes the fact that I look and act too good to be out of remission. I still can’t stop crying and I have to wait until tomorrow to find out the results. UGH! Fortunately, I get to go home to the Ogles and have dinner with the family and a new grandchild, Walker – three weeks old.

Time to Return

I went to the Town Center Mall yesterday for the first time in at least 10 weeks to buy a pair of jeans (or two) that fit my smaller body. I'm tired wearing baggy pants. I'm only getting a few as I have no idea where my weight will be when my treatments are completed. This cold weather is requiring me to wear long pants, sweaters and socks.

Tomorrow I return to Houston and MD Anderson (that is why I bought the new jeans) for my third round of Chemo. I have been feeling terrific for the past week, but not so today. Am I nervous about returning? When I had my blood work done today all my important numbers had gone down (not a good thing). That has never happened to me before. Once my blood started to recover my numbers continued to climb until chemo. My Research Study Nurse, Jennie, said this is perfectly normal and that I shouldn't worry. Easier said than done, as I cannot take the Chemo if my numbers (white blood cells and platelets) are too low. Should I go to bed or run a marathon? I asked Jennie. "No," she said. "There is nothing you can do so DON'T WORRY." I was on my way to having a depressing day but friends galore called or came over to wish me well. My spirits stayed high!

One good thing about going back to Houston is that I get to see my friends, the Ogles, again. Another good thing - my friend Jaynie got me upgraded to First Class again so my exposure to germs will be lessened.

Oh, my amazing friends. They continue to amaze me!

Getting Back to Normal (whatever that is!)

Today I met with Tom Kennedy, the chairman of SFMA and my boss, about my returning to work at least part time. I have worked at the South Florida Manufacturers Association for almost 25 years – I miss it! I want to get my life back to normal. I’m hoping to work at least 2 ½ weeks per month – some of it from home. Stay tuned for the details on this.

Tomorrow is my 63rd birthday! Now, in years past I would never admit to my age. Now, I’m going to be grateful for year I have – striving to my goal of dying laughing on my 93rd birthday. I don’t know why I chose 93 but it seems like long enough. Doesn’t it?

I’m receiving the BEST present for my birthday tomorrow. Hoerbiger Corporation of America has a manufacturing facility in Houston and they are holding a blood drive in my name to replace all the platelets and red blood cells I received while hospitalized at MD Anderson. I’m so grateful to those who are donating blood and those who arranged the donation. Once again, I am humbled by the kindness of strangers who are willing to give of themselves so others can heal. They are giving the “Gift of Life.” Thank you. Thank you. Thank you.

SFMA will be holding blood drives in Miami Dade, Broward and Palm Beach Counties shortly if you would like to give the “Gift of Life.” Call Barbara at the office at (954) 941-3558 for details.

Happy New Year!

Whitney and I celebrated New Year’s Eve by dining in on beef filet, creamed spinach and mashed potatoes. Yum! Whitney did all the cooking – I did all the sitting and all the eating. My daughter left today to return to NYC. I’ll miss her terribly. The holidays are over, all my family is gone and I now have to face the New Year – I’m not going to say alone because I have so many people who help me. You know, MY AMAZING FRIENDS! I do, however, have to face the fact that this year will be different than the previous 62! I will be returning to Houston on January 12th for Round Three of Chemo – returning on January 20th.

Can you believe that I have not been to a mall, a Publix or a restaurant for more than two months (because of my compromised immune system)? Can you believe that I don’t really miss it? There will be times during the month when I will be able to go to public spaces I just need to figure out when that will be. I want to get back to working, too! I feel so good, I’m beginning to miss work.

Happy New Year to all of you! I hope it is your best year ever.