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.