SOME JOURNAL ENTRIES DURING LAST HOSPITAL STAY FOR CHEMOTHERAPY - March 15 – March 19
March 16 - Tuesday
I just finished breakfast and the methotrexate drip has started. There is the two-hour primer drip and then the 24 hour one begins, so it is really a 26-hour methotrexate drip. I must be vigilant about drinking cold beverages (hot ones are not allowed) and rinsing with my sodium bicarbonate mix. Hopefully, I will be successful, as in the last B cycle, and avoid stomach or mouth sores.
At 8:09AM my vitals were taken – my blood pressure was 110 over 64 and my temp was 98.7. I weighed in yesterday and today at 111.
Hero card: Each time you stand up for an ideal, you send forth a tiny ripple of hope.
—Robert Kennedy
11:40AM – I’ve read three chapters in The Crimson Petal and the White; I have four to go until the book is finished, so I should be able to complete it today. It is a compelling story rife with interesting, fascinating, and (mostly) deeply flawed or disturbed characters. Descriptions of places and people are elaborately and vividly detailed—even crude images are explicitly depicted. This book was such a lovely gift—a treasure from an acting teacher whom I love.
Mom called to check in around 11:00am, but our conversation was cut short because a priest came into my room to see if I wanted to receive Communion. Of course, I did, so Mom will call back this afternoon, and again this evening, I'm sure.
Jeff called about 11:40am and we talked for about twenty minutes. He greeted me with, “hello, Princess!” (Dan started that long ago before I got sick when I first moved to the northeast, was living with him and Barbara, and wasn't employed—ha, ha.) Jeff was telling me about the neighbor issue. Somehow a surveyor or a contractor screwed up and built the neighbor’s driveway on Karen and Jeff’s property. Now the parties are trying to resolve this issue amicably but the neighbor is being a jerk - basically wanting Karen and Jeff to give him the property. They were discussing the possibility of an easement, but I told Karen that I didn't think that was a good idea because if I were house hunting, I would not purchase a home that had an easement attached to it.
We also talked about my visiting in September and Jeff said my room would be ready. Jokingly I said, “Well, I need a TV, a phone, internet connection…”
He replied, “I’ve already thought of that.” Apparently he had wanted these things in every bedroom to increase the resale value, but after talking to the builder and finding out the additional cost he nixed that idea—though not entirely, he’s decided to do it himself. He had asked Karen wouldn’t it be nice for Deborah to be able to pick up the phone or get on-line without having to leave her room? Very thoughtful! I’ve got a wonderful family. I need to call Barbara and Dan and give them my room number—forgot to do that.
12:15PM – vitals: blood pressure 101 over 67, temp 98.9, oxygen – 100, heart rate – 85. My view of the city is obstructed by the snow and clouds. I’m listening to the Moulin Rouge soundtrack and right now the song “Diamond Dogs” sung by Beck is playing. It’s a funky, raunchy kind of tune but very fun.
3:05PM – I finished the first draft of my next blog—Forgiveness—Letting go of the Past. It’s a very personal piece of writing, but I feel the need to share this story.
Lena brought the results of my daily blood tests in—everything is low. Platelets went from 129,000 yesterday to 109,000 today, WBC went from 5.4 to 4.9 (still within the normal range), but HGB is low 7.9 from 8.7 (Dr. Goldberg will be giving me red blood cells later in the week), and my glucose is high, but that’s due to all the steroids and decadron being given to me with the chemo. I will be getting Potassium later today because that is low as well.
I finally asked Dr. Goldberg how we track my progress. He said that at the end of this cycle he will do another bone marrow extraction, it’ll be sent to the lab, and we should be able to see if any cancer cells are still present. I’ll be half-way through the chemotherapy regimen after this cycle. I need many prayers this week. I feel good, so that has to count for something, right? I would love to be able to tell my family and friends that I’m in remission—it’s the gift I want to give them.
I’ve been listening to my CD from Prince Hal. Right now “To Sir, With Love” is playing. That is the song I want to dance a father/daughter dance if I ever get married. I know it is meant to be sung to a very special high school teacher, but what better teacher is there than a father. I love mine so much. Great, now I’m crying.
OK— now “Can’t Buy me Love” is playing—that helps dry the tears!
3:40PM – vitals look good: blood pressure 107/69, temp – 98.9, Oxygen – 100, heart rate – 85. I’ve been talking with Elsie, my roommate, and an aid came into the room to take our vitals, so I rushed over to my bed to record the results. After penning them to paper, I returned to Elsie. She’s so cute, but I can tell that she’s scared and frustrated. Only a week ago she went to her doctor for a follow-up appointment (like I did back in December), blood tests were taken, and she was sent to Union Memorial. She stayed there for five days before being transferred to Hackensack. She has been diagnosed with leukemia also.
Elsie is 84, a widow (her husband died fifteen years ago), she has three children (two sons and a daughter), five grandchildren, and she lives in a four bedroom Cape Cod by herself. She likes to needlepoint. She was in the process of selling her home and now she doesn’t know what she’s going to do. Her daughter is sarching for apartments close to where she lives in the Trenton area. Elsie is scared and frustrated. A permanent catheter was placed into her arm, and she’s fretting over how to care for it over the next six months. I shared with her my experience taking care of my own catheter: how a nurse came out twice to train me and how supplies of bandages and injections of saline and heparin are delivered. The bandages and antiseptics are for changing the dressing around the catheter insertion area, while injections of saline and heparin clean out the lines and prevent clogging, respectively.
She will need a nurse to come out and change dressing and flush her lines—being 84 and the catheter being in her arm. I couldn’t change my own dressing if I only had one free arm available to do the job. She’s not helpless, but when you’re not feeling well and you don’t have a lot of freedom of movement, it can be difficult caring for the catheter. I hope I can help her while I’m here—at least be someone with whom she can talk. We chatted for about an hour and then my phone rang—it was my always dependable, loving mother checking in on me.
Now I’m listening to Ricky Martin's Sound Loaded CD. The song playing is “She Bangs.” It’s an extremely fast tempo, and I can remember Nelson and me turbo salsa-ing to this song at Viva’s in Cincinnati a few years back. It was the fastest salsa I’ve ever danced. One is forced to take tiny steps so as not to lose one’s balance when dancing at this speed ;-) It was such a blast!! I danced last weekend in NYC at Babalu; it felt so wonderful to move again and I hardly missed a step! Of course, Nelson is an awesome dance partner.
Barbara rang about 5:40, while on her way home from work. We talked for about twenty minutes. I could hear Aidan fussing in the car but he soon fell asleep. She talked to me as she maneuvered the SUV home in the snow. We talked about my chemo, her work, and her conference in Miami this weekend. Dan is flying down to join her, and she’s extending her time there so that they can have some couple time. It’ll do them a world of good to spend time together without Aidan or me. Saturday Russ is staying with Aidan and me, and Sunday Natalie will be here. Tuesday Barbara and Dan return.
6:35PM – vitals: blood pressure is 114/70; temp – 99.2; Oxygen – 99; heart rate - 91.
Yes, it’s been snowing since 10:00am. Yesterday it was sunny and in the 50’s—crazy weather. And of course, the snow and clouds have obstructed my view—I see no NYC skyline—even with my glasses on it is invisible. However, I can still see the lights of Hackensack, so the snow on the buildings and the streets looks beautiful, and the myriad of city lights look like diamonds sparkling on a black backdrop. I like being in the bed by the window much better than by the door.
Mom made her final call of the day around 8:00pm and Karen called around 8:25. At least my family is keeping me company by phone—I’ve only heard from Joseph, but none of my other friends have touched base with me. I’m sure they will, though…
9:05PM – Katie called! We talked for about twenty-five minutes and she said she’d call again Thursday or Friday. I told her that she and Joseph were the only two friends who’ve called, and she replied, “Well, you did say Wednesday in your e-mail.” “You’re right,” I replied, recalling that I had written that I start getting lonely around day three. OkayI’m a spoiled brat and a whiner—ha, ha!
I have been reading Seeds of Light by Elizabeth K. Stratton, M.S—trying to commit to memory some of the meditations that seem most relevant to my situation. The chapter "Healing Your Body" focuses on the seven chakras of the body. I was reading the meditation ‘Self Healing’ and came across the following:
On the count of three, you will receive a symbol of healing—one, two, three. Breathe. Accept this symbol of healing. Visualize it in the area of your body that is now healing, and trust that it will continue to generate healing energy and new life.
As I read this, I didn’t receive a symbol, but instead felt a jolt of energy to the fourth chakra, which is the chest area where the heart is located, and I began to cry. This is the area of love and compassion. There is no mention of blood or the circulatory system being associated with any of the charkas (at least not in the books I've read about chakras), but the heart pumps blood throughout the body, and wouldn’t it make sense that if one is heartsick that the blood being pumped through the body would be sick too?
When I review much of what I’ve been exploring about my past, so much of it has dealt with matters of the heart. That is what I most need to heal—I am sure of it now, and I feel that I am on my way.
11:20pm –vitals: blood pressure – 111/70, temp- 98.8, heart rate – 73, oxygen – 98
March 17 - Wednesday (St. Patrick’s Day)
8:15AM – vitals: blood pressure – 111/58, temp – 98.6, heart rate – 81, oxygen – 100%; weighed in at 110
I’m flushed today but that happens after several days of chemo.
“God Calling” - No Greater Joy
Withdraw into the calm of communion with Me. Rest--rest, rest in the calm and Peace. Life knows no greater joy than you will find in converse and companionship with Me.
You are Mine. When the soul finds its home of rest in Me, then it is that its real Life begins.
Do not fear. You need to trust Me for everything.
—A.J. Russell, ed
I’ve been chatting with Elsie. She is being tended to by a nurse, so I thought I’d record my blood count results I received a few minutes ago. All counts are from yesterday (16th) to today (17th) : wbc – from 4.9 to 8.0, rbc – from 2.32 to 2.52, hgb – from 7.9 – 9.0, platelets – from 109,000 to 117,000. Everything except the wbc count is still low but they’ve come up since yesterday. The wbc is within the normal range. However the glucose level is down—from 212 to 123 – still high but at least down.
Susan called around 11:30am. She’s planning to call again later in the week.
The methotrexate drip is finished, and they drew a blood sample so that they can know how much is in my system. The four bags of cytarabine will begin shortly. I will definitely be here until Friday because the last cytarabine drip won’t happen until at least Thursday at midnight.
11:55AM – vitals – blood pressure – 113/64, temp, 98.8, oxygen – 99%, heart rate – 93
Dream card: Do not pray for dreams equal to your powers. Pray for powers equal to your dreams.
—Phillip Brooks
I love this one! I have always been a dreamer and one of my favorite sayings is: “If you can’t dream it, you can’t do it.”
I’ve been spending more time with Elsie. I think she needs the company, and this is a good opportunity for me to start giving back. When I begin volunteering, I’ll basically be talking to other cancer patients, and this is valuable practice getting me started in that direction. It makes me feel good to know that I may be helping someone who is lonely, frustrated, or scared.
I can tell I’m starting to lose my appetite—I hardly touched my veggie burger, but I did manage to eat the pasta salad and lemon ice.
1:35PM – Lori called. We talked for about fifteen minutes. She is going to call again Friday.
2:30 – Shelley has arrived. She is such a good conversationalist—I feel I could talk with her for hours. She bought me five raffle tickets for the Hackensack University Medical Center Foundation. The 1st prize is 30% of the gross proceeds, 2nd prize is 15% of gross proceeds, and 3rd prize is 5% of gross proceeds. I could use the money, and you don’t have to be present to win. She stayed until 4:30. As we were saying good-bye, Cindy called. Lots of phone calls today—I knew I could count on my friends.
Vitals taken at 4:05PM – blood pressure – 108/67, temp – 99.6 (a little high for me), heart rate - 83, Oxygen 97%
Dinner came at 5:15—way too early to eat. I’m not hungry. I ate some of my tomato rice soup, about a third of the salmon, and half of the mashed potatoes. I make myself eat a little bit of food, but I lose my appetite after several bags of chemo. Usually the side effects hit on the third day.
I revised my Forgiveness essay, updated my reading list, and am now going to listen to one of my audio books. I think I’ll start with The DaVinci Code.
Mom called and so did Lani. Lani’s going to try to visit tomorrow. If she comes she’s going to bring me some AA batteries for my portable CD player. I got through the first CD of The DaVinci Code but was dozing in and out during the second one, so I’ll have to listen to it again when I’m more awake.
At 6:00pm tonight there was a Quaker prayer meeting for me in Cincinnati. I tried to stay open to its energy, but I was receiving phone calls and nurses were coming in, and so I was distracted. I’ve found it very difficult to focus on meditation or prayer being here, due to all the interruptions—nurses, aids, the dose rate calculators always beeping for one reason or another. It’s not a conducive environment to solitude. Perhaps I need to concentrate harder, but I always like to acknowledge the people who come in to help me. I want the healing power of the Quaker’s prayers and I hope I was open enough of them to allow the goodness to penetrate my being. That was so kind of Priscilla and her prayer group.
6:50PM – vitals: bp – 100/66, temp – 98.6, hr – 86, Oxygen – 100%
11:15PM – final vitals: blood pressure – 114/75, temp – 99, hr – 85,
Oxygen – 98%
March 19 – Friday
“God Calling” – Courage
I am here. Fear not. Can you really trust Me? I am a God of Power, as well as a Man of Love, so human, yet so divine.
Just trust. I cannot, and will not fail you. All is well. Courage.
Many are praying for you…
—A.J. Russell, ed
It is snowing out. I must say I am so ready for warm weather. The cold and snow make me very melancholy. I desperately need the warmth of the sun and the cheerfulness of azure skies. I’ve felt cold all winter, even in the warmth of a comfortable home. The chill in my bones sometimes feels permanent and it scares me—I long to feel warm and safe.
I leave the hospital this afternoon. The nurses should be working on my release forms and setting up my clinic appointment for Monday. Once I’m sure about my departure time, I’ll give Dan a ring. Hopefully I’ll be able to get my Neulasta shot Monday—that’s a little over forty-eight hours but that’s ok, I think.
8:15AM - My vitals: bp – 115/73, temp – 98.8, O– 99%, hr – 101
weight – 113 (has to water weight—I’ve not eaten much in the past couple days—I’m not going to be vain about it, but that’s the most I’ve weighed in a long time ;-) )
9:40AM- Carol Reynolds called to check in. She didn’t realize I was in the hospital but I told her I was being released today. I told her that I was feeling pretty good but I was definitely ready to be home. She told me to get on-line and google a Dr. Whitaker when I get home because he is not only a doctor but also a practitioner of wholistic foods/healing. And she also told me that Gary Epstein, the author of Healing Visualizations, is giving a free workshop next Saturday on healing cancer. I’d love to go but doubt that I’ll have the energy to trek into the city.
Mr. Rodriguez called and we talked briefly—he’s getting ready for rehearsal. He had two clients this morning, two more scheduled at 4:00 and 5:00, then he is going out with friends. Says he’ll be home by 9:00! (He’s definitely an early bird.) I teased him about being old—of course, he’s so not!
11:45AM – vitals: bp - 118/74, temp – 98.8, hr – 92, O – 100%
Mom called to check in, as did Dan. I told him to be here around 2:00pm. However, the doctor has yet to show up and it’s 12:20pm, so I’ll give him another twenty minutes and then call Dan to come later. It irritates me when they know you’re to be released and yet they make you sit around for freaking ever. I want to go home. I called Shelley and left a message to see if she can take me to get my Neulasta shot tomorrow morning—if she can’t, we’ll need to figure something else out. Maybe Donna or Bob, or one of the neighbors would be other possibilities. Anyway, I have to figure it all out. I’ll have Natalie to take me to Monday's appointment.
My blood work came back –
from March 18 to March 19
Wbc 6.5 to 10.4
Rbc 2.45 to 2.61
Hgb 8.4 to 8.9
Pltlt 119,000 to 110,000
Counts are mostly up, except platelets down. Glucose is still high but at least not over 200.
1:15PM – FINALLY my release paperwork has come through. My clinic appointment Monday is at 3:20pm.
2:30PM – Fr. Bob gave me communion and we talked for a while. He was the priest who spent time with Mom, Dad, and me on Christmas Day. I really like him – he is very kind and personable. I am waiting for Dan to get here. Very tired…
3:15PM – I said good-bye to Elsie. I leaned over her bed, kissed her on the cheek, and told her I’d keep her in my thoughts and prayers. She said she’d do the same for me. I hope I made her stay a little more bearable. I spent quite a bit of time with her Tuesday and Wednesday, but yesterday and today I didn’t have the energy. She’s so sweet—I hope she continues to fight.
I told the nurses I wanted to walk out, not be wheeled out, which they agreed to. Dan and I left as everyone at the nurse’s station waved good-bye.
It is always difficult when I leave the hospital. This is the fourth time now and every time I cry. I feel badly because it has been my brother-in-law bringing me home the last three times from the hospital, and he’s had to suffer through my emotional states—just kidding—he’s probably unaware of my tears because I make every effort to hide them. I feel so beat up by the end of the chemo cycle, and I’m so relieved to be going home, but there is such an overwhelming sadness that hangs over me like a menacing dark cloud on these days. Fortunately, we picked up Aidan from daycare and his smile ALWAYS generates a smile on my face. He was so cute—playing on the slide (a small one inside the facility) and then when we were leaving, there was this pool in the hallway with an assortment of colored rubber balls. Aidan took a flying leap face-first into it! It was so funny! I told Dan, “You need to get one of those for home.” He just smirked at me.
Home at last. I took a hot bath and then crawled into bed. Both Mom and Karen Karen called as well as Natalie, who will be here next week to help me out. I can’t wait to see her.
