Introduction

The Diary Of A Cancer Caregiver is a collection of emails that were written and sent to family and friends during the course of my wife’s – Diana Grace – 2 1/2 year battle with lung cancer. New emails were written when significant events took place – sometimes every few days and other times 2 – 3 weeks apart. The emails were written in real time and have been edited for clarity since her death. I have also added other information, emotional and events that were occurring at the time of the emails but it was not appropriate to include them in the emails at the time the email was written. After Diana’s death on April 7, 2007, additional diary entries were written by me, the husband and caregiver. These latest email diary entries were not previously distributed. All of the emails reflect the stigma, emotion and thought processes that the Cancer Caregiver went through and is continuing to go through. The emails were written from the perspective of the caregiver and do not necessarily reflect the emotions of the cancer patient, my wife, Diana Grace. The edited emails have been published in this book.

There is a web site and blog with more information that can be accessed at

http://www.cancer-caregiver.com

I can be contacted using the Contact Us page.

October 2004

The Diary of a Cancer Caregiver journey started on a golf vacation that my wife and I took with friends in October, 2004, to Hilton Head Island, SC. We were celebrating my wife, Diana M. Grace’s birthday which occurred on October 31 – Halloween.

But first, let me provide a little background.Diana and I moved to Frisco, TX, a suburb of Dallas, in 1990. I was President of a small High Tech company and Diana had just resigned her position of Marketing Specialist from Data General Corporation, Westboro, MA. She had worked for them the last 13 years. After spending lots of time in Europe and The Netherlands in the early 90’s on business, we settled back in our Frisco home. I had a corporate business office in Amsterdam and so we had an apartment where we would stay while I was in Europe. Upon our return from The Netherlands in 1992, Diana started her own company – GolfTournament.com LLC. My office was now based in the Dallas area.

Now we will jump forward to 2004. We are still living in the same Frisco, TX house. I had resigned from my position but Diana was still running her Company. The Company had grown to 8 employees and she had purchased her own 3000 square foot building (with a mortgage of course) I was spending time consulting to other high tech companies and some hours each week on an internet strategy for Diana’s Company. Until Diana’s cancer diagnosis, neither of us had ever been hospitalized with an illness. Sure, we had the flu and colds occasionally, but never any serious health problems.

Now, let’s continue with our Hilton Head golfing vacation. While we were playing golf one day, Diana started to complain about a pain in her shoulder. All of us shrugged off Diana’s complaints about her shoulder pain. If you are a golfer you will understand. Hit a bad shot – complain about shoulder pain. Normal golfer behavior.

Later that day, Diana started to lose her voice. She also started to wheeze when she would try to speak. And to add more misery she started to cough. We all agreed that Diana should visit a doctor as soon as we returned to our Frisco home in a couple of days.

To continue on this journey, you will need to sequentially click through each of the emails links. The original emails did not start until January 2005, after Diana was diagnosed with Stage IV Lung Cancer. However, I have documented the events leading up the diagnosis. Each email has a link to the next sequential email. The journey for the cancer patient finally ended on April 7, 2007 – 2 1/2 years after our golfing vacation.

However, the life of the cancer caregiver goes on and so does the diary. My involvement in caregiving started slowly and then quickly rose to a peak. Near the end, my caregiving had turned into a full time assignment. And then in an instant, it was over and gone. Nothing is in the control of the cancer caregiver. You just adapt to the current situation. The emotions of the caregiver fill the new void created by the loss of the patient – in this case my wife. Through the emails and the weekly blog, I hope to assist cancer patients and caregivers the world over in coping with this deadly disease.

 

November 2004

Upon our return to Frisco from our Hilton Head vacation, an appointment was made with my pulmonary doctor for Diana. I have struggled all of my life with colds turning to bronchitis very quickly. In early 2004, I had a cold that became bronchial. After visiting the doctor, an x-ray and CT-Scan were performed on me. The diagnosis was a hiatal hernia that would need to be watched. Nothing serious. A nasal spray was prescribed and I used it for a few months. Today, I am feel fine.

In the meantime, Diana and I would continue to go to work everyday. It was hard for Diana to speak, so she was avoiding speaking on her telephone. Since most of her customers and vendors were located across the US – avoiding the telephone meant speaking to no one except the employees. It was bothering Diana mentally also. She was very worried and concerned about what was wrong with her. The stress was building. I was very concerned and wanted to find out what was wrong with her.

In November, Diana made several visits to the pulmonary doctor’s office. I went with her every time. The doctor originally thought Diana was under stress. He prescribed medicine for the cough and wheezing. A couple of weeks later, when she did not respond to the medication, I called the doctor for a follow up appointment. This time, an x-ray was finally scheduled. The x-ray showed an abnormality in Diana’s left lung and that would require more investigation with a CT Scan. A CT-Scan was scheduled for Diana in early December at a Plano hospital.

At this time, we were still not thinking of anything as serious as cancer. I had gone through this same test process six months earlier and it was something minor. We knew Diana was ill and wanted to get her better. we were a little frustrated because it had taken so long to get to the CT Scan test. After all, it was more than a month since Diana’s first appointment.

 

December 2004

In early December a CT scan was scheduled and the results showed a very small tumor – 2 cm – in her lung. We were terrified. However, the doctor comforted us and said we did not know yet if the tumor was cancerous. Diana needed another test. Next a biopsy was scheduled. On December 15, we received the news that the tumor discovered in Diana’s left lung was cancerous. Diana and I were both devastated when we received the news in the doctor’s office.

 

However, our pulmonary doctor told us the tumor was very small – 2 cm – and located in the very bottom of her lung. He told us it was the smallest tumor he had ever detected. He also went on to say, that he had not thought that Diana had cancer from her symptoms and he was surprised at the outcome. Our doctor said the tumor was in a great location and could easily be removed by surgery. However, a new test needed to be completed – a PET Scan – before proceeding with any surgery procedures. I had gone to the doctor’s office with Diana that day and drove her home. After sharing much sadness with each other in our house, I returned to Diana’s office to notify the employees of the news. Not an easy task since I did not have answers to most of their questions.At this time in our lives, Cancer was a six letter word that happened to others. Diana and I were in shock but highly optimistic based upon the doctor’s preliminary diagnosis.

A PET Scan was scheduled for December 23 at 10:00 AM, again in a Plano hospital. A PET Scan is a test – similar to a CT Scan – a radioactive fluid is injected into the test recipient. The fluid is attracted to any cancer cells and will be seen by the radiologist doctor reading the scans. Diana’s PET Scan was done at Plano Hospital. This was a different hospital from where her CT-Scan had been done. As we drove to the hospital that morning, we passed by a Dunkin Donut Coffee Shop. Diana was from Massachusetts – where Dunkin Donuts was originally founded and grew up on Dunkin Donuts and loved them. Since you cannot eat prior to the PET Scan, I told Diana that we would stop at Dunkin Donuts on the way home and celebrate the test results.

We were both nervous as we waited for Diana to be called for her PET-Scan at the hospital. Finally, Diana’s name was called and in she went. The test takes approximately an hour – but let me tell you it is a long hour. Finally Diana came out. The lady technician conducting the PET Scan let us know that since the Christmas holidays were approaching, the radiologist doctor who would read and interpret the PET scan results would provide us with the results after lunch if we wanted to wait. We went and had a sandwich in the hospital cafeteria and came back to the PET Scan area around 2 PM.

The radiologist doctor took us to his area and showed us the results on his computer system. What he showed and explained left the two of us in a state of shock. Diana’s cancer was determined to be Stage IV. Diana’s lung tumor had metastasized and cancer was detected in her right shoulder, spine, right hip and right femur. We both left the hospital in a state of absolute shock. Neither of us said a word to the other on the twenty minute drive home. Needless to say, we did not stop at the Dunkin Donut Coffee Shop. Once home, we told Diana’s mother who lived with us the diagnosis and broke down into tears.

 

Christmas 2004

Needless to say, but Christmas 2004 was not a joyful time. Diana’s younger brother David and his wife Pam, who reside in Wichita, KS came to visit for Christmas week. Twenty-five years ago, David was diagnosed with Hodgkin’s Disease and bone cancer. After six months of chemotherapy and radiation treatments in Wichita, David made an appointment at the Mayo Clinic. After his visit to Mayo Clinic, he was told that the Mayo Clinic could offer him no additional treatment.

 

Upon his return home, David and his wife did some research and came upon a “vegetarian cleansing diet’ cure for cancer. David used the diet religiously and continues to do so today.Seven years ago, David was diagnosed with prostate cancer for which he had surgery. David is an engineer for a large aircraft manufacturer in Wichita, KS. David obviously knew much about cancer and i used his resource to educate myself.

Much time was spent educating myself on the real meaning of Stage IV Lung Cancer using the internet. An appointment was scheduled during Christmas week with a local Frisco TX Oncologist.

On December 28, armed with all of Diana’s test reports, we anxiously drove to the oncologist’s office for our appointment. The Oncologist looked at all of Diana’s test results and without hesitation informed us that Diana had three to four months to live and we had some tough decisions to make.

Since I was schooled as am engineer (electrical), I think like an engineer and attacked this problem the same as any other problem I have faced in my career. I had to understand, how it happened, why it happened and explore all of the options to fix the problem. We spent over an hour with the Oncologist,- asked many questions – however, nothing changed the Oncologist’s opinion of his prior diagnosis. He said that it would be Diana’s choice of whether to undergo chemo treatments. Since there were bad side effects with chemo, maybe Diana did not want to go through those treatments.

We finally left the oncologist’s office – both of us in total shock. We knew prior to this appointment that a Stage IV diagnosis was not good – but the reality of how bad the diagnosis was had not sunk in and been accepted by us. We did not want to believe what we had just heard. Surely, he was mistaken. Something could be done. I was determined to get a second opinion and find a solution.

At this time, Diana still had her cough and was wheezing, but she looked great physically. Surely, there was something we could do. I went home and started to research lung cancer on the internet. I found out about MD Anderson Cancer Hospital, located in Houston, TX which is approximately 275 miles fro Frisco. MD Anderson has been rated as one of the best cancer treatment centers in the world. We decided to get a second opinion there.

I got on the telephone and pleaded for an appointment as soon as possible. Through research and friends, we requested a certain doctor at MD Anderson only to find out that he was out of the country until February. Thus we settled on one of his colleagues and an appointment was set for the first week in January. It was tough waiting for the appointment date. We both wanted to see the new doctor as soon as possible. Surely, he would have a better remedy for Diana’s cancer.

At this time, looking at Diana you wouldn’t know she was so sick. She still had her cough but looked great physically. She also had no physical limitations at this time – but she did have lots of mental stress in her mind as I did too.

I went to Diana’s office and informed the employees of the Stage IV diagnosis and that Diana and I would be going to MD Anderson in Houston for their opinion. In the meantime, I needed their support to keep the business running smoothly since Diana and I would be out of the office quite a lot of the time.

I was spending the best part of my day researching lung cancer and clinical trials on the internet. The more I found and learned about lung cancer, the worse it seemed to get. I was getting scared. I really wasn’t prepared to handle this kind of problem. I would go to sleep and hope that I would wake up and find that it had just been a dream. Surely, Diana was not as sick as we were told.

 

January 8, 2005

On Tuesday January 4, 2005, Diana and I departed from our Frisco home via our car on our first trip to MD Anderson in Houston TX. It is a 5 hour trip via auto – about 275 miles each way. We made reservations at a Marriott Hotel – which we did not know at the time – that was located in the Medical Center area of Houston and across the street within walking distance of of the MD Anderson Clinic. Our appointment was for Wednesday morning at 9:30 AM. Armed with all of our records, we found our way to a huge waiting room on the ninth floor of the clinic. Both of us were quite nervous as we sat in the waiting room. We obviously were the only newbies – no body else had their x-rays, etc.

Finally, Diana was called. A nurse took Diana’s vital signs like weight, blood pressure, temperature, and put us in an examination room. After a long wait, we met Dr. Blumenschein. He was a young doctor in his mid to late 30’s, tall and well mannered. His first question was – “Had we been given a prognosis?” Diana told him of the Frisco oncologist’s prognosis. Dr. Blumenschein was quick to inform us that the oncologists quote averages and that everyone is different. He told us he would be open and honest with us – there was not a cure for Stage IV lung cancer, but many of his patients were enjoying many years of the disease being in control and that was what he would try to do for Diana.

First, as he explained, he had to know exactly what he was trying to control. Even though we had brought all of our test results, he wanted new tests completed before he would recommend any course of action. So for the rest of Wednesday, Thursday and Friday, he had the following tests scheduled: blood test, chest x-ray, pelvis x-ray, femur x-ray, CAT Scan, bone scan, MRI L-spine, MRI T-spine and brain MRI. Neither Diana nor I combined had had that many tests in our life let alone a few days. Wow. But it was sure encouraging to hear his attitude rather than the prognosis we had been given previously.

On Thursday, it was test after test. We finished Diana’s last test at 11 PM after arriving at the clinic at 10 AM that morning. We got back to the Marriott around 11:30 PM. Both of us were exhausted.

While Diana was taking tests on Thursday, I was meeting with the financial people at MD Anderson. They did not like the health insurance provider that Diana had. Rather than have a delay while they were getting approval – I gave them a cash deposit on account so we could proceed with her tests before getting insurance approval. After a second meeting with the supervisor, MD Anderson agreed to invoice Diana’s insurance company directly. They originally wanted me to pay all the bills and for me to submit them to the insurance company. Whew! What a job that would’ve been. I am not a trained salesman: however, I used all of my high tech selling experience in getting MD Anderson to agree to invoice Diana’s insurance provider directly.

After 3 full days of tests we drove home on late Friday afternoon. It was a long drive, but both of us were encouraged by what we had seen heard and been through in our first visit to MD anderson. Their attitude was different and although both of us were tired, we felt as if we were making progress and doing the right thing. Our next appointment would be January 12 with Dr. Blumenschein to discuss the results of the tests.

To continue with the Diary Of A Cancer Caregiver journey, click on the link below

 

January 15, 2005

After a couple of days rest at home, we were back on the road to MD Anderson on Monday afternoon. A new test, an echocardiogram had been scheduled for Tuesday and our appointment with Dr. Blumenschein was on Wednesday. Once again we stayed at the Marriott.

 

On Wednesday, Dr. Blumenschein provided the results of Diana’s tests. Besides everything we already knew, they had found a small amount of cancer in her skull – however, Dr. Blumenschein said that it did not change any treatment plans because the skull is considered bone. Therefore, it was the same as the cancer in her other bones. Fluid had also been detected near her heart and pleural cavity. There was nothing he would do immediately because of the fluid but would continue to monitor those areas. However, he was going to schedule an EKG as a follow up to see if the fluid was impacting her heart functioning.Dr. Blumenschein then discussed chemotherapy treatment options. With the cancer cells all over Diana’s body, radiation was not an option at this time. Since we brought up the subject of Clinical Trials previously – he mentioned one that he thought would be good for Diana. It was a combination of Cisplatin (an approved FDA chemotherapy drug) and TLK298.

We set a meeting for us with the research nurse assigned to that clinical trial. The research nurse explained the treatment process to us for the clinical trial. He also gave us some forms which needed to be signed if we decided to proceed with the clinical trial. Dr. Blumenschein wanted Diana to have time to think about which treatment she wanted to pursue – so he suggested we go home, think about it and make a decision next week.

We drove back to Frisco on Thursday morning. We left the clinic convinced that Diana would pursue the clinical trial treatment. We had a couple of days at home before we would have to depart back to MD Anderson on the following Monday. The EKG was scheduled for Tuesday and our treatment decision appointment with Dr. Blumenschein was on Wednesday after which Diana would get her first treatment.

I spent Friday in Diana’s office inundated with things to do. Diana stayed at home to rest. I went home for lunch with Diana. We spent the weekend at home. Only discussed her treatment options for a couple of minutes since we were in agreement that we would proceed with the clinical trial.

 

January 22, 2005

On Monday afternoon, January 17, we departed for Houston and the Marriott. It was the third week in a row that we would travel to MD Anderson in Houston. The staff at the Marriott was beginning to recognize us. Fortunately, during my work and travel years, I had spent many a night at a Marriott so I was classified as one of their Platinum guests. Platinum guests get upgrades at no cost when one is available. So we got to stay on the concierge floor of the hotel which gave us access to the concierge lounge. Snacks, food and drink all day. Just like going to the kitchen at home. Usually, there is a very elaborate breakfast buffet and a lighter dinner snack available. It is very convenient to go get something to drink or eat without having to leave the hotel. On Tuesday Diana had her EKG test. Else it was a quiet day spent at the hotel. I went out and brought in Chinese food for dinner. Neither of us were in a mood to go out. Diana is very nervous but trying not to show it. I am doing all I can to make her as comfortable as possible.

 

Wednesday, we went to the clinic to meet with Dr. Blumenschein. Diana and I had discussed and had agreed that Diana would do the clinical trial as her treatment. Diana and I had signed all of the required forms authorizing the clinical trial.We met with Dr. Blumenschein who knew that Diana had already signed all of the papers for the clinical trial. He spoke to Diana for 30 – 45 minutes. At that point he was convinced Diana wanted to proceed with the clinical trial and said he would now sign the orders to proceed. He was just making sure that Diana wanted to proceed. Signing of the documents was not enough for him.

Diana took her chemo treatment Wednesday night and finished about 7 PM. We went back to our hotel and departed for Frisco Thursday morning. About 3 hours into our trip home, Diana did not feel well. We pulled off the freeway and into a huge parking lot of a sporting goods retailer. Diana had her first case of nausea from chemo. I felt helpless. We were not prepared for this event. I went scrambling for paper towels, water, etc to clean up. I had not expected nor planned for such an event. I would in the future however. We finally got Diana cleaned up and continued home. Once we got home, Diana went straight to bed.

Diana was sick several times on Thursday afternoon/evening and Friday morning. On Friday morning around 11 AM I sent an email to the research nurse about Diana’s nausea. Within five minutes I received a phone call on my cell phone. It was our research nurse at MD Anderson. He had received my email. He told me that Dr. Blumenschein was out of town, but he would speak with him soon. He told me to get the telephone number of our pharmacy and email it to him. Once he spoke with Dr. Blumenschein, he would call in a new prescription for Diana’s nausea and inform me.

Around 1 PM I received a call from MD Anderson that a new prescription had been called into our pharmacy for Diana. I immediately went and picked it up. The new prescription was suppositories – but they worked. Diana has been resting all weekend. She has been very fatigued. Emotionally, it has been a tough week for both of us.

I spent Friday and Saturday at her office, but my mind was not there. I hate to see Diana sick, especially when there is nothing I can do to help. However, we need to learn to suffer through these sick days as they are very normal when you take a chemotherapy drug. I cannot believe what Diana is going through and there is nothing I can do to improve the situation. Every time she gets sick, I get mentally sick and just walk around in a daze until I can help her back to bed.

 

February 11, 2005

It took Diana two weeks to recover from her first chemo treatment. We had a week of normal activity and now it is time to go for her second treatment. Diana was very fatigued and spent the two weeks in bed. Diana rested most of the third week and did not go to work. I jumped in and am now running her Company on a temporary basis. I came home for lunch each day. The office is only five minutes from our house, so it is very convenient. On Saturday, Diana and I went out and did some errands – bank, cleaners, etc – and stopped for lunch out. Quite a treat.

We drove to Houston on Monday afternoon. Diana had her blood test and chest x-ray on Tuesday. On Wednesday we met with Dr. Blumenschein only to find out that Diana’s white blood cell count was too low to receive her second chemo treatment. So Diana received a booster shot instead and we headed back to Frisco on Wednesday.

Diana’s second chemo treatment would be delayed for a week which meant we would be coming back to MD Anderson next week again. In one way it was good – it is going to give Diana another week to recover and get stronger. Another week without being sick. Although we were disappointed in not getting her chemo treatment, the bonus of another good week was well received by us both.

We are starting to know this highway – Interstate 45 – and where to stop. We have found a Starbucks and Waffle House that are convenient rest stops during the trip. There are a bunch of little towns that we haven’t stopped at yet, but I am sure we will have the opportunity in the future. We had a nice quiet ride home – no worry about getting sick this time – however, I was prepared and had the car loaded with supplies in the trunk. Not needed.

 

February 18, 2005

Diana had a couple of really good days in Dallas after our return from Houston last Thursday, She even spent a couple of hours in the office on Friday. On Saturday, Diana had an appointment with her hair dresser. On the way home from Houston last week, we discussed getting her hair cut short since it was starting to fall out. She was not very receptive – but I think I finally talked her into the idea. I tried to convince her she had an opportunity to cut it short – if she didn’t like it, she was probably going to shave it off soon as it continued to fall out. Anyway – she had it cur shorter – not short – but very short for her. Since she is now getting comfortable with her hair – I will do my best to try and get her to let me photograph her – if i am successful, I will attach in my next email. I think my chances are less than 50% however. Her hair dresser did a good job and she really looks great.

 

However, Diana showed much fatigue on Sunday and Monday. She was still very fatigued for our trip to Houston on Tuesday. We arrived in Houston Tuesday afternoon. We went directly to MD Anderson clinic and Diana had her blood drawn for her blood tests.Yesterday, Wednesday, we had appointments with the Research Nurse assigned to Diana, Dr. Blumenschein’s PA (Physician Assistant) and Dr. Blumenschein. We were at the hospital for about 3 hours. Each of them tested and questioned Diana. By the way – Diana’s blood pressure tested at 125/86.Pretty good – she has been much more nervous on our previous visits and tested much higher on previous visits.

Dr Blumenschein was pleased with her progress and her physical appearance. Diana’s white blood cell count was up to 3.7 – from 1.1 last week – the blood count needed to be 1.5 or higher to get the next treatment. Prior to her first chemo treatment her white blood count was 5.5. So Diana made it with room to spare. He was really pleased. However, Diana was and is still having her coughing spells. Diana was also complaining of shortness of breath on Sunday & Monday. Dr. Blumenschein tested her and came to the conclusion that her shortness of breath was not associated with the cancer. He then had Diana go and get a new lung x-ray. We left the hospital about 7 PM. The thought of getting the x-ray really upset Diana as she was worried about what new problems the Dr would find.

Surprisingly, Diana slept really well last night. First time in four nights. We went to the hospital this AM for her treatment. Dr Blumenschein’s PA called me this AM and said they saw that Diana had a bacterial infection in the lung from the x-ray. They prescribed an antibiotic for Diana to start taking tonight for the infection. I only hope that the infection is the cause of her cough too.

Diana received her second Chemo treatment today. She was in the hospital from noon – 6 PM. She felt good after the treatment and we stopped for a snack on the way back to the hotel. By the way, we are staying at a Marriott Hotel about 3 blocks from MD-Anderson while in Houston. Pretty convenient. She is lying in bed resting watching TV (The Apprentice) as I write this email. She is feeling well and just asked me if she felt this well after the first treatment. Last time she did not get sick until the next morning and then was very sick for 2-3 days and fatigued for two weeks.

Diana took her new anti nausea medicine this morning before receiving her chemo treatment. She will take it for the next 2 days. Hopefully, it will work better than what was prescribed last time. By the way Diana’s blood pressure today before her chemo was 123/68. Unreal – especially for her.

Tomorrow we have an appointment at noon for her white blood cell booster shot. once that is obtained – we will head home to Frisco.

Diana’s next visit will be in 3 weeks. She will have a CT Scan to measure the tumor and see how well the treatment is progressing. It will be an important visit as it will be the first indication of how Diana is responding to the chemotherapy treatment. I am anxiously awaiting the results as I know Diana is too.

Again – thanks to all for your support and prayers.