THE GIFT

Just a little while ago, I received the most wonderful phone call.  Ms Sonya, my substitute, called and let me hear the children telling me about the butterflies hatching and they are letting them fly to me today.  I told them how much I missed them and love them which of course they responded likewise and their little voices meant so much to me.  I told them I was proud of what good listeners they have been, congratulated two of the children on recent birthdays, turning 5, and being ready for Kindergarten.  I wish I could have stayed on the line all day.  They had so much to say and all I wanted to do was listen.

Then I explained to them about gifts.  Some you buy at the store, some come in boxes with bows, but the most special ones come from the heart.  The gift of hearing their voices is one that came from the heart and needless to say made me very emotional.  I really, really miss them.

DAY BEFORE ROUND#2

Today has started out a little more slowly than yesterday.  I am nauseated and a little more tired.  I know I am feeling more stress since tomorrow is a chemo day so I will try to take it a little easier today.

I am getting letters out to note the change in venue for Aaron’s wedding and my lesson plans for next week will be sent to Janet Zuniga, my Vice Principal today.  Janet has been so supportive and has faxed me jobs to do to help her.  I suspect she is really trying to help me by keeping me busy. She knows who she is dealing with.  I am so grateful to be able to stay in the loop and not feel totally out there.

I got three phone calls from people reprimanding me that I didn’t get the blog for yesterday up early enough. LOL.  Yes, I was a little late, Sorry.  It kind of humors me to think that first thing in the morning, people head to the blog to see what I am up to.  But it is very comforting in many ways that they care enough and support me every which way they can.  I hope when I am well again, that I can offer the support that I receive daily to someone else who needs it.  

Going it alone has got to be the worst.  The nurses at Sloan told me how sad it is for people who check themselves in, are alone all the time, and check themselves out of the hospital and go home alone.  I can’t even imagine or rather would not wish to imagine.  Th support that I get from all over is what drives me to get up each day and fight back.

So, brush up on those prayers and get that energy revved up to help me get through tomorrow.  I’ll be thinking of you all with tremendous gratitude.

UNEVENTFUL=EXCELLENT

Yesterday and so far this morning have been uneventful and that to me means excellent.The pain meds did their thing, I was able to eat 3 meals (lunch was grilled cheese and tomato soup, YUM), had enough energy to do some tasks around the apartment (get rid of the Matzah), and work on next weeks lesson plans and leave of absence paper work. My colleague, Susan called so excited yesterday because at a training meeting, she was acknowledged with many compliments and encouragement since she has taken on the task to assist my classroom in maintaining the stable environment for my children.  And so it should be. Her extra work has given me the chance to accept more and mourn less.  At 4:30 this morning, Jan and I were talking about the school decision and I was very weepy.  I tried to explain to him about the need for closure for children, the need to say good-bye, and the fact that when they came to school yesterday they expected to see me and were disappointed.  The children and I had marked each day I was to be absent with a picture of my glasses so they would know what days I would be there and which I would not.  Well yesterday, they did not understand since there were no glasses on the calendar and where was Ms. Debbi? My technologically adept husband has a few ideas up his sleeve.  He is going to check if our computer system in school will accept videos that I can make here, reading or telling stories to the children.  That way, I can introduce them to new books not in the classroom and they can see me and hear me tell the story.  This would really make me so happy if he is able to do this. So hopefully, today and tomorrow will also be uneventful and that I can get my boxing gloves on the fight this disease with Chemo on Thursday.  Call 212-787-6530 if you have a few seconds to spare or write a note jan@buckler.com.  I so look forward to hearing from everyone and I do answer all my mail.  

Eliyahu HaNavi visited 3 times on Pesach???

Well, as you may know, Eliyahu HaNavi, Elijah the Prophet, visits once at each Passover seder and since those of us who live outside of the land of Israel conduct two seders at the beginning of Passover, we would expect two visits on Passover from Elijah. However, Debbi and I were fortunate to have had a third visit from Eliyahu.

As I wrote previously, we were in room 511A and we had the suite to ourselves. This past Thursday morning, another patient was admitted to 511B. Sad to report, the roommate was really in a difficult way. After listening sympathetically for the entire day, at bedtime, Debbi was having a tough time blocking out the crying, even with high strength earplugs, so that she could get some much needed rest.

We asked our nurse if there was any way that we could move to a different room so that Debbi’s healing could continue. The floor supervisor shortly decided that it would be best to move the roommate to a private room where all her needs could be handled more efficiently. Even though the roommate was transferred, somehow Debbi was left with fears related to her own destiny and whether it would be similar to the roommates.

At approximately midnight, out of nowhere, Eliyahu showed up in 511A. I am sure that by now, any reader of the blog can guess that Eliyahu was disguised as Dr. Michael Zelefsky. He quickly reassured Debbi of the treatment plan reminding her that Dr. Russo, the oncological kidney surgeon was standing by, monitoring Debbi’s progress, and waiting to take the kidney at the appropriate time. Patiently listening to Debbi’s fears, Michael was able to quickly calm Debbi and re-instill a vision of hope that included one day looking back and having this whole incident be nothing more than a bad memory.

May G-d grant Michael and his family health, happiness, and all good things for many, many years to come.

A BEAUTIFUL DAY

It’s a beautiful, sunny day here in NYC and I am feeling back to myself.  Jan and I were able to sleep in our own bed and enjoy being home.  For this alone I am so grateful.

I awoke around 1:30 AM and couldn’t go back to sleep.  I sat on our sofa in the living room and reminded myself of the beautiful seder just days before and having all the kids here.  Then I really missed Joshua because he is so far away and I will not see him until the wedding in July. TA-DA!!!!! Where does Josh live? San Francisco. What time is it there? 10:30PM. Does Josh sleep? NO.  So I called him. I got to visit with Josh for about a half an hour just to talk about his plans, laughed about some other plans and had a ball in general.  What a gift that he had that patience to spend time with me and keep me company when I know he was exhausted from the long traveling work schedule he keeps.  But I do know it was beneficial for both of us.

I am relaxed, organized, and will rest, meditate, and have my discussions with God until Jan comes home.  Gotta pump up those white cells and get ready for the next round.

FINALLY HOME

It is now Friday, and 5:00PM and I finally walked into my clean and sun-filled apartment.  

This last 24 hours since my last entry have been another knock out for me emotionally.  During middle of the night, Wednesday to Thursday, a patient was moved into my room who was in terrible pain and near the end of her journey.  Her cries and the noise of the professionals working on her was not just disturbing to Jan and me but heart wrenching as we cried along with her.  Her agony went on all during the day and although I tried to use ear plugs I found I couldn’t stay in my room for very long.  By 5:30 PM last night, I was curled up in a chair in the lounge, unable to eat, uncomfortable and needing my own medication and emotionally spent.  I really didn’t want to complain because I felt selfish but by 9:30 PM , I fell apart and was hysterical and really needed to get back in bed.  The floor finally decided to move the other patient but by that time, I was in need of sedation.  So, in a quiet, darkened room, a little out of it, Jan worked on the computer and I dozed.

Then God sent another miracle.  At 11:00 PM. my curtain opened and Dr. Michael Zelefsky (our treatment engineer) was standing  there.  We asked if he was on rounds and he said he just came for a visit.  We retold our frightening experience and Michael in his gentle way, reminded me of our 6 plan treatments and that Dr. Russo is waiting on the other side of those treatments to remove the kidney.  The drop in my white cells was expected and I am rallying back the way I am supposed to.

Now we are home. It’s quiet and Jan will get to sleep in his own bed and eat a proper meal gratefully supplied by Rea’s in-laws at a proper table and celebrate the last two days of Passover.

I am emotionally spent, crying a lot but spiritually joyous and grateful.  PLEASE KEEP UP THE ENERGY AND PRAYERS.

LOVE YOU ALL.

I’M GETTING SPRUNG!

Things are looking really good with my counts and the infection risk is very low so I am told I will be sprung tomorrow, Friday, and be able the spend the weekend and the end of the Passover holiday at home with Jan.  I will be provided an oral antibiotic for home to continue my recovery. People have sent in food and my adorable pregnant Rea is making chicken soup as I write.  We are so fortunate to have so many people supporting us in so many ways.

I am deeply grateful for this stay at Sloan and am learning the ropes of this process by trial and few errors, Thank God.  This is an efficient and caring cancer center with a professional staff and equipment that is state of the art.  It is heartbreaking to see the havoc this disease wreaks on people’s lives but the endurance and hope for survival of each patient is powerful.  Each day, I am thankful for the miracle that my cancer was found somewhat early and that because I was in great shape at the onset that I have the ability to go another round.

 

DOWN FOR THE COUNT

Now I know what the term “Down for the Count” really means.  Once my white cells started falling, they fell fast and hard and I was knocked out.  After 4 days in the hospital building me up, I WILL go back into the ring for the fight with my next chemo scheduled for one week from today.  I am very happy that I didn’t play hero and that I followed my doctor’s orders that if my temperature rose to 100.5 or I developed chills that I was to go directly to the hospital.  And so 10 minutes after symptoms developed last Tuesday night, Jan had me here at Sloan.  I am sure if you are interested in the gory details, which even I cannot comprehend, Jan has it logged on his entries.

Let’s talk about the word “UNCLE.”  I am having to also say this word and admit that I cannot do it all.  I have been told that I am not being allowed to return to my classroom after all since my immune system has been compromised and even if one of my little ones coughs or sneezes near me it can be detrimental.  It would have been a little easier returning to a job with less exposure.  OK, there are only 39 days of school left and as I recover over the summer, I can start back in the fall.  I will have to apply for a medical leave of absence which in one way is very frustrating because I really wanted to go to work and yet in another way is a truly a relief so that I can stop putting pressure on myself and just get well.

I have a plan.  My darling colleague, Susan Simbol will create lesson plans and assist the substitute in my classroom and I will use my energy to create activities and develop material lists for Susan and I to incorporate into our classrooms in the fall.  At least I can feel productive while being confined at home..

Jan has been the most amazing caretaker.  I have been very fortunate up until now to not have spent a single night in a hospital except, of course, to have each of my 4 children.  Jan sleeps here and stays with me all night waiting on me hand and foot.  This also has been a very difficult adjustment.  I never thought our roles would be anything such as this, but he is so kind, encouraging, and the love of my life.  We are together 37 years, married 34 of those and the depth I feel for him cannot be measured.

Jan also says that he sees a vast improvement since I am now telling him what to do, moving chairs around and just nudging him in general. He says he likes it! LOL.  So more rest in the hospital today, more antibiotics, and prayers and hopes that we are going to beat this disease.

Please continue transmitting whatever you are communicating to a higher power because I am deriving such strength from it and I can truly feel it working.

 

 

Room 511A

Well, we have been here for almost 24 hours and Debbi is certainly looking much better. While looks are important, the blood counts and Debbi’s temperature are the driving factors that will enable us to go back to our side of Manhattan. 

Yesterday (Wednesday 4/23) at 8am, bloods were drawn and they showed marked improvement. One note, Debbi has received additional antibiotics and we are expecting the Thursday 8AM blood tests to be even better but because my hospital/work schedule is a bit irregular now, I have not had a chance to update the data until now. 

We are watching the following items:

Item 4/03 4/10 4/17 4/22 4/23 Normal Range
Potassium 4.0 4.5 3.9 3.4* 3.9 3.5 – 5.1 mEq/L
Red Blood Count 4.5 4.1 4.1 3.9* 3.5* 4.0 – 5.2 M/mcL
Hemoglobin 12.4 11.6 11.4* 11.1* 9.9* 11.5 – 16.0 g/dl
White Blood Count 6.7 7.5 5.9 2.0* 3.9* 4.0 – 11.0 K/mcL
Abs. Neutrophil Count 4.7 5.3 4.2 1.2* 3.5 1.5 – 8.8 K/mcL
* lower value than the Normal Range
4/03 was our first visit to Dr. Bajorin
4/10 immediately prior to the first chemo treatment
4/17 immediately prior to the second chemo treatment
4/22 blood test administered in Sloan Kettering Urgent Care
4/23 9AM blood test

 
At 2AM Thursday, Debbi is sleeping. Tulsi, our nurse just came in to change the antibiotic. I asked her about the data showing that the Red Blood Count and the Hemoglobin counts have gone down while the White Blood Count and the Absolute Neutrophil Counts have risen as we had hoped. Tulsi explained that all the IV drips can have a diluting effect on the blood and that our main concern should still be Debbi’s ability to fight infection. So, we look to the White Blood Count and focus on the ANC and have cause for some relief as we look forward to the results of today (Thursday’s) 8am blood test.  

The Doctor’s and Hospital staff may have their method of gauging her condition but after spending 37 great years with Debbi, I have my own. Lets call it the Noodge Index, her capability to noodge others. For sure when we came to Urgent care on Tuesday, Debbi was weak and had trouble holding her head upright let alone be a noodge. Tonight she must be feeling better because she spent a full 2 minutes “instructing” me how to position the foldout sleeping chair. You know, like Feng Shui!!! Anyway, if she has the strength to be bothering me about such matters, she must be feeling better so lets combine the Noodge Index with the above data to get a more accurate picture of her overall well-being:                  

Item 4/03 4/10 4/17 4/22 4/23 Normal Range
Potassium 4.0 4.5 3.9 3.4* 3.9 3.5 – 5.1 mEq/L
Red Blood Count 4.5 4.1 4.1 3.9* 3.5* 4.0 – 5.2 M/mcL
Hemoglobin 12.4 11.6 11.4* 11.1* 9.9* 11.5 – 16.0 g/dl
White Blood Count 6.7 7.5 5.9 2.0* 3.9* 4.0 – 11.0 K/mcL
Abs. Neutrophil Count 4.7 5.3 4.2 1.2* 3.5 1.5 – 8.8 K/mcL
Noodge Index 5.0 4.2 3.7 1.5* 3.4 3.3 – 6.6 Lbs.

 Much better… and by the way, I like being noodged, as long as it stays in the Normal Range!!

101.1 Fever sends us to Sloan Kettering

Debbi was really feeling weak today. I came home from work to find her listless and complaining of alternating hot flashes and chills. I grabbed the digital thermometer and found that she had a temperature of 101.1. We were under strict orders to call Sloan in case of a fever greater than 100.5 so we called. Before we were connected to the evening operator, Debbi took her temperature again and it had dropped to 98.9. I hung up the phone. After 15 minutes, the temperature was back up to 101.1 so I redialed the hospital. We were told to come to Urgent Care right away and that there was a distinct possibility that an overnight stay was in the cards. 

We packed up some clothes, knitting, sudoku, the computer, earplugs, etc. and jumped in a black car outside our apartment building for the now very familiar ride to the East Side. Arriving at Urgent Care, we signed in and yes, Debbi had to provide her birthdate to the receptionist. Blood was drawn from her arm and then we had a bit of a wait for a bed in the bullpen. While we were waiting, a young child wearing the telltale beach cap came in to have her chemo-pump adjusted. Just tore at our heartstrings.

Soon we moved to bed 19 in the bullpen. The port was accessed for another blood sample. An IV drip was started at 8:30pm and Debbi was still pretty weak. At about 9:30, Dr. Mattai came in and explained that while Debbi’s counts were not low, per se, they were definitely on the lower edge of normal. Dr. Mattai then remarked that she had conferred with Dr. Bajorin and that they belived that the counts, especially ANEUT (Absolute Neutrophil Count) which had been 5.3 prior to the first chemo, 4.2 prior to the second chemo five days ago, and now stood at 1.2, could drop further over the next 24 hours. 

ANEUT counts below 1.0 (0.7-1.0) imply a moderate risk of infection so the medical team wanted to be sure that adequate precautions were taken given their intuition that further reductions in ANEUT were possible if left untreated.

So, the decision was made to give Debbi this monster sized Potassium Chloride pill (her K was 3.4) as well as three different IV antibiotics, and a special drug named Filgrastim. Wikipedia says that Filgrastim is used to decrease the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (the type of blood cell needed to fight infection). Immediately, Debbi thought of the difficulties of going back to work with all her young kids that she loves so much replete with colds, runny noses, etc! Oh, well… something to consider for another day. Right now we just have to worry about the counts.

The IV antibiotics have to be given in a definite order taking 3 hours to dispense. We have been assigned a bed in a regular room upstairs but until the antibiotics are finished, we have to remain in the urgent care bullpen. At the time of this writing, IV Antibiotic #1 (Amikacin) is complete, there is about 15 minutes left on IV Antibiotic #2 (Aztreonam), and the automatic dispensing pump was just programmed to deliver IV Antibiotic #3 (Vancomycin) over 90 minutes starting with the completion of the Aztreonam.

Readers of the blog know about Debbi’s naming proclivities. I can’t even imagine what she would call these antibiotics. Thankfully she is sleeping quietly now so she can name them tomorrow. I am told that this combination will probably be repeated once or twice more tomorrow in order to build her counts to safe levels. 

Debbi’s vital signs were checked as the Aztreonam drip was started. Blood pressure and her temperature were normal and she looked a lot better. I am so glad that we decided to go directly to Urgent care. I estimate that somewhere around 2AM Wednesday, the Vancomycin will finish, we will go for a chest x-ray and then finally to our room. We can only imagine the plush mattress in room 511 as Debbi has been sleeping on the thin gurney mattress for over four hours now. So, we wait for now. 

Hope to update everyone with good news in the morning. 

Nightey night!