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.