Posted below are the “Dad/Nate Update” emails Suzanne sent to family and close friends during the last two months of Nate’s life.

Sent: Thursday, October 04, 2007 5:27 PM

Erika suggested that I try email as a way of keeping folks up to date. So some of you have heard all of this and some have heard some. Here’s where we are.

8 weeks ago Nate had lower back pain that we attributed to lifting something heavy in the garage; pain did not go away

6 weeks ago he noticed large lumps in his neck while we were on vacation in NYC

5 weeks ago he saw his PC (primary care provider) who suspected lymphoma

4+ weeks ago he had these lumps biopsied – no one could figure out what was the problem. Cancer was suspected but this could not be confirmed by pathologists in Tallahassee and at the U of Virginia

3 weeks ago - CT scans were done of his upper and lower body. He has enlarged lymph nodes full of calcium through out his body. There is a large mass – also full of calcium- in his lower abdomen – back

2 weeks ago - He had two more biopsies – of enlarged nodes/mass in his chest and abdomen/back… tissue looks the same – anomalous but not malignant

Through all of this Nate’s pain is increasing, he is losing weight, and is very fatigued. He is on pain meds, and we have stopped the weight loss by feeding him anything at all he wants (pizza, pepperoni, mcdonald’s – the one humorous part of the story).

I got “permission” to talk to the pathologist – requested he send tissue to Armed Forces Institute of Pathology (AFIP) the mecca of difficult cases; he agreed but wanted to send it to a doc at Emory as well. Spoke to pathologist twice to insist on sending to AFIP

10 days ago – met with oncologist who does not know what this is and wants a bone scan. Discussed our desire to have tissue sent to AFIP.

1 week ago – met with PC again, brought CT scans. Asked for other tests for hyperparathoidism or other possible explanations. PC ordered tests, looked at CT reports and stated his concern that the mass in his abdomen was shutting off Nate’s left kidney’s ureter and he could lose his kidney. He scheduled an appt with a urologist that day.

Monday – Nate had a stent put in his ureter to permit the kidney to drain. Only the smallest stent could be put in because the mass around it is so hard. The urologist is concerned that the stent will be forced closed unless something more is done…

Wed – Nate had a bone scan looking for bone cancer (we do not have the report yet); called pathologist – he had just sent the tissue to Emory (ugghhh) and had not sent any to AFIP; had not gotten tissue back from U of Va because they sent it “snail mail” so he made new slides to send to Emory.

Today – went to PC again. Parathyroid tests were back – normal; none of the other tests were abnormal. Discussed our frustration about having no PLAN and wanting to move forward – either remove mass in abdomen and/or go to MD Anderson or Sloan Kettering and get this figured out. PC states that he cannot make a referral to a cancer center, the oncologist must do that.

Tomorrow – we meet with the oncologist and are going to insist on a PLAN.

This has been very frustrating. Nate is not doing well and we are not getting anywhere. I guess my biggest anger is with the pathologist who seems to have no sense of urgency. Everyone does their own thing but does not look at the big picture. They look at the CT scan and should be able to see Nate may lose a kidney but do not mention this or do anything about it. I take the CT scan results to the PC who realizes that there is some urgency and does something. He is honestly our only saving grace. He seems to get it but he is out of the loop. He said he would refer us to MD Anderson or Sloan Kettering but an oncologist must do that. So he thinks we should absolutely INSIST that the oncologist come up with a PLAN tomorrow.

So tomorrow we will have a PLAN I hope (I have said this too many times before).

Nate enjoys talking to folks on the phone but not going into a long litany of his story to date. So getting this out to folks takes the pressure off him and me to repeat it to all those who are concerned and interested.

All things considered, we are doing ok. I had a melt-down last night and a small one in the doctor’s office today. I think I will have one tomorrow in the oncologist’s office even if I have to stage it to get something done. Nate is fatigued but I think he is a bit less depressed than a week or so ago. He is very galvanized to DO SOMETHING.

So hopefully my next installment will have a different tone….

Thanks for listening…

We love you all and thank you for your continuing support. We often talk about how very fortunate we are to have wonderful children, friends and family who care for us and on whom we can rely. It means so much

Sent: Monday, October 08, 2007 11:09 AM

All: We met with the oncologist Friday morning. They still don’t have a definitive path report but the bone scan shows extensive bone involvement which is probably causing most of Nate’s pain. The oncologist believes it is a soft tissue sarcoma that has metastasized throughout the lymph system and bone. If this is so, Nate will die from this and our goal is to relieve pain and extend his life provided that he has reasonable quality of life. The problem is that we don’t know how to treat this without knowing what it is. The chemotherapy regimens differ greatly depending on the cancer type. So, we came up with the following plan:

1.

the oncologist will ask pathology to send tissue to AFIP (I have been asking for this for weeks). It is already out to a sarcoma specialist at Emory but he agreed that it could not hurt to have more input given the difficulty everyone is having figuring out what this is.
2.

He will get us an appointment at Moffitt Cancer Center hopefully this week. He was willing to send us to MD Anderson or Sloan Kettering. In the end, Nate feels he wants to be closer to home. We have good friends – the Spevacks- in the Tampa area we can stay with and it is a direct flight from NYC for our girls. By the time we go to Moffitt we should have the path report back from Emory and hopefully from AFIP. If for some reason, we don’t feel comfortable with Moffitt, the oncologist is more than willing to refer us to MD Anderson or Sloan Kettering.
3.

He set up an appointment for today to discuss radiation therapy here in Tallahassee – the idea here is to radiate specific bones that seem to be causing Nate’s pain. It is palliative.
4.

He changed his pain meds; the new meds seem to be working although he sleeps alot.

So we don’t have a treatment plan but we have taken clear steps to get one. That is the good part. Of course I am very sad when faced with such extensive metastatic disease in someone I love but that it to be expected. I cried most of Friday. Now, my tears come and go.

I spoke to each of his six children over the weekend to let them know the sad news. Nate and I also enjoyed our time together – we went to a play Friday night and a football game Saturday. I am becoming an expert at taking care of Nate’s fish, and doing critical chores that Nate used to do. He just feels too exhausted to do much.

I am feeling sorry for myself because I love this guy so much and he is my very best friend. I don’t care how old he is (75) or how long we have been married (29 years), I am just not ready to lose him. That said, I have many things to be grateful for:

I have had 29 years with the love of my life; I have family and friends who are loving and supportive; I have no financial stress over this – we have great health insurance, we planned for this eventuality as part of our financial planning and I have accumulated 61 weeks of sick leave over the 32 years I have worked for the state; I have no work stress over this – I have a fully functioning department faculty who can carry on without me and everyone at work is nothing but kind and supportive.

There are still many unknowns. We don’t know if there is something that could extend his life provided that it is good quality of life. Even if there is, we don’t know how sick it will make him or if it will work. And of course, we don’t know how much time he has. So as we move forward through this process, I’ll keep you in the loop. I know that I can ask for help whenever we need it and I won’t be shy about asking.

Love to all -

Sent: Friday, October 12, 2007 2:30 PM

It has been another week of wrestling with the US health care system.

On the plus side, we met with the radiation oncologist last Monday. He is quite optimistic that he can help Nate’s pain. He is scheduled to begin treatment this coming Wednesday – there will be 10 daily sessions (weekdays). This is palliative but he also wants to radiate the tumors in Nate’s legs to prevent breakage. Apparently the tumors grow and cause not only pain but can weaken the bone so much they can easily break. He says it does not matter much what kind of cancer Nate has, the palliative aspect of the radiation should work. We liked the radiation oncologist very much. He made a copy of Nate’s bone scan for us and carefully went over it in detail.

On Tuesday morning, the nurse from the oncologist’s office called and said Moffitt would call us within 24-48 hours to set an appointment. They never called.

On Wed night, pathology FINALLY sent out tissue to the Armed Forces Institute of Pathology after I sat in their office and paid for everything including fed ex. This was day 31 since Nate’s original biopsy. They were also kind enough to get all the materials, including a tissue sample, ready for me to take to Moffitt where we do not have an appointment. They failed to mention to me that the pathology report from Emory had come in.

All afternoon on Wed Nate called the oncologist’s office to let them know we had not heard from Moffitt. The phone was always busy. So I drove there after my sit-in at the pathology office and arrived at 4:45 pm. I asked to speak with the oncologist’s nurse…She had already gone home so I wrote her a note.

When I got home, Nate said the oncologist called and said the Emory results were in indicating a carcinoma, not a sarcoma. The oncologist seemed to be surprised but somewhat encouraged that is was a carcinoma rather than a sarcoma.

Thursday morning I call Pathology and asked them to fax me the Emory report. They refused (so much for patient centered care). They said it had to be faxed to the oncologist’s office and they could give me the report. So I called the oncologist office. The oncologist’s nurse was out for the next two days (so much for the note I left her) and I asked for someone else to call me back. No one did. I called pathology back and pleaded with them for the report. The secretary said she could not fax it to me but I guess taking some pity on me, she suggested that the report was in the sealed envelope they had given me to take to Moffitt (where we don’t have an appointment). So of course I unsealed the envelope and made a copy of the report.

This morning I called the oncologist’s office and asked for the oncologist (not his nonexistent nurse) to return my call as soon as possible. He actually called back. He stated that he had called Moffitt three times and they had not called him back either (geez – maybe someone else is frustrated by this?). Nate and I said we wanted something to happen and we were willing to ask colleagues to get Nate an appt at the cancer center in Gainesville or ask colleagues at the U of South Florida (where Moffitt is) to intervene on our behalf. The oncologist said he wanted to see what could be done today and also said he was going to schedule Nate for chemo since he feels with a diagnosis of carcinoma he can get him started on some sort of treatment. He promised to call us by the end of the day. I honestly hope this will happen…

Not leaving anything to chance, I then called Moffitt directly. They did have a record of a referral on Oct 8 (last Monday) which they made to the sarcoma program. I explained that is not where we need to go now and that we wanted the Senior Oncology program. They then said they could not make an appointment until they had Nate’s records faxed to them. All the records were at the sarcoma program and the person there was out for the day (does anyone go to work? Does anyone have back-up when they are not at work?). I offered to have all the records re-faxed to them to move the process along. I got the fax number and called the oncologist’s office and asked a staff person to refax the materials. She said she would. However, she indicated she had very little in the way of records. I seem to be the only one with all the records so I faxed all 24 pages.

So here we are. Another week has passed and Nate is receiving no treatment, palliative or otherwise, although at least we have something scheduled to happen next Wed (our one bright spot). This is our situation despite the fact that we have PhD degrees, currently or have worked in a medical school, and have very good insurance. So I guess the care we are getting (or lack of it) is the best care the US health care system can seem to offer. Can you imagine what uneducated folk with no money no insurance and no connections go through? I don’t want to even think about it.

Nate continues to get sicker and sicker. It tears me up to watch this. I am losing the food battle which I was winning for awhile. I cook and buy any food I think he might like, but he eats next to nothing. The oncologist feels it is the cancer that is taking away his appetite and if we get him in treatment, this may improve… great… so like when is this treatment going to actually happen???

His current diagnosis – metastatic carcinoma with unknown primary (CUP) – probably squamous cell type – is at least a diagnosis and gives some sort of direction. However, any quick exploration of this diagnosis on the internet leads to the conclusion that this is not a good cancer to have. However, some people with this diagnosis do get relief from chemotherapy and many with bone metastisis are helped by the radiation which he will start on Wed. So between sadness and frustration, I hold out some hope for some relief and at least some more time we can enjoy together.

I know this reads like a soap opera. I only wish that it was.

To be continued…..

Sent: Saturday, October 13, 2007 9:29 AM

After yesterday’s diatribe, I figured it would be unfair to leave you all hanging for yet another week. Moffitt did call back to make an appointment. Unfortunately they called when Nate or I were on the phone. When I got the message at 3:10, their appointment service had already closed (aarrrggghhh). However, as Nate points out, it does not much matter whether we make the appointment late on Friday or early on Monday. At least we have a specific person to call and get it done.

The oncologist called two times, and Nate is set to start chemo next Friday. Tuesday we will meet with the oncologist to go over all the details. Even if we don’t make it to Moffitt before then, I am hopeful I can get the Moffitt docs to talk to our oncologist about chemo treatment options. That may be all that is needed anyway. Also, a quick review of the clinical trial literature suggests to me that the drugs the oncologist wants to use are sensible. I will do more work on this before our meeting on Tuesday but at the moment, I feel this is a good plan.

Nate’s PC also called and left a message. He was going out of town for the weekend and had talked to the oncologist. Realizing we still did not have an appointment at Moffitt, he was worried about how we are doing and wanted us to know he would be back in the office on Monday if we needed to talk. I love that man. He is truly the shining star of this ordeal.

Wed Nate will start the bone radiation and he can have both bone radiation and chemo at the same time. There are issues about how sick this is going to make him (the chemo more than the bone radiation) and that will be discussed with the oncologist on Tuesday. Nate can make an informed decision after that.

I came up with a new eating plan that seems to be working – milkshakes! Although Nate has no appetite he can still drink and he liked the idea. So last evening we sat by the fish pond, he had a shake and I had a glass of wine. We talked and enjoyed the beautiful weather and his beautiful fish (which I am doing an excellent job taking care of, if I do say so myself). Then I ate some dinner and he had another milk shake and we watched a movie. It was a lovely evening.

I realized that when I do this weekly review, all of my frustrations come out. I am sure you are all learning more about how I cope with stress than you ever wanted to know. That said, I think the venting is helpful to me and I am fortunate to have good friends and family with whom I can vent. Some of you have asked to be added to this listing and may now have regrets. Just let me know if you want off- I won’t blame you a bit – or just don’t read the diatribes.

We love you all and appreciate the calls, letters and emails of support. Nate and I enjoy hearing about everyone’s lives. When I have been on the other side, I always worried that my daily activities seemed so mundane in relationship to the stress the ill person and his/her caregiver were going through – I was hesitant to mention them. However, I must tell you that from our perspective, those seemingly mundane details are precious indeed and we love to learn about them. It is soothing to listen to the cadence of everyday life in those we love. Hey, if those things weren’t so special, it wouldn’t be so hard to say good-bye.

Sent: Monday, October 22, 2007 12:18 PM

The last time I emailed, we were hoping for an appt at Moffitt. I called first thing last Monday morning, only to be told that they had not reviewed Nate’s records and couldn’t give an appt until that was done. I asked when I might hear back re an appt and was told they “didn’t know.” I then contacted one of my colleagues at work who used to work at USF (where Moffitt is) to see if he could intervene on our behalf. By Tuesday morning we had an appt for Nov 16!! I explained to the appointment clerk that was too far away to be helpful and could the Moffitt oncologists consult with our oncologist in the meantime. She said that could not happen until Nate had his appointment! We learned later from our oncologist that the Moffitt oncologist did call him (I am sure thanks to my colleague) but had not reviewed any of the records. It did not sound like it was all that helpful of a consultation.

Totally frustrated, last Tuesday morning I contacted good friends at UF about getting us an appt at the Cancer Center there. By the end of the day, Dr. Marsh from UF had called us and we had an appt for Friday morning. Tuesday afternoon we met with our Tallahassee oncologist. He knows Dr. Marsh and thought this was a good idea.

On Wed Nate had his first bone radiation treatment. On Thursday he had his first chemo and radiation. Friday we met with Dr. Marsh at UF. He ran some additional tests for tumor markers and felt that a third drug should be added to the chemo. He also wanted the bone radiation stopped. It is palliative but it will also make it very difficult for Nate to keep up his blood counts during chemo. Marsh wants to try the chemo, control pain with meds, and if the chemo does not work go back to palliative bone radiation. Dr. Marsh already called me this am to say that the tumor markers were essentially negative and he thinks we should go with the three drug chemo. He will talk to our oncologist this morning as to how to get Nate on track. Basically he takes two drugs on day 1 (which he did last Thursday), a third drug on day 8 and then starts the cycle again on day 22. They will reevaluate after 2 cycles. If he has improved or at least not gotten worse, they will do two more cycles. At best, he has a 50% chance of responding. If this does not work, we are looking at as little as 3 months. If he does respond, Dr. Marsh says he has some patients on a maintenance treatment after 1 year.

Thursday evening we got a call from Erika to tell us that Leigh (her boyfriend) had proposed and he had bought plane tickets for her and him to come to Tallahassee for the weekend. He had alerted us to the surprise which coincided with Erika’s 27th birthday. (He had also called a few weeks ago to ask Nate for permission to ask Erika to marry him; Nate said it was fine with him but Leigh had to ask me too! We both love this guy and are totally delighted). We had arranged for Marissa to come home too so we had a special weekend together. Everyone helped with Nate’s garden and Erika and Leigh went to the FSU- Miami game – Nate just did not have enough energy to go with Leigh but was quite animated watching it at home on TV.

Erika does not want to make wedding plans until we know more about Nate’s situation but he has said that he is comforted knowing that both Erika and Marissa have loving partners to share their lives with; he does not need to be at a wedding to know they are loved and cared for. We have all told him that we do not want him to live in pain for our sake and when he is ready to stop the chemo and turn to hospice we are completely supportive of that decision. For now he is willing to try the chemo. He is very sick so I do not know how much energy he has for this. But my guess is that he can make it through the two course trial.

The plan is to have all six of his children and their families here for Thanksgiving. This is something we look forward to. In the evenings, I read him the day’s emails and he continues to enjoy your cards, letters, and calls. I have moved us up to 3 netflix at a time; he still enjoys that and can read the newspaper and engaging fiction. For local friends, it works to have folks come by for an hour or so and share a drink around our fish pond and chat. He has no appetite so sharing dinner really does not work. If anything, trying to sit with all of us while we are eating makes him more nauseated. So we are sorting out what seems to work best.

Last week I told my boss about our situation. He was extremely kind and supportive. He made it very clear that he expects Nate to be my first priority and not to worry about the dept of the college…

I have said this before but it is worth repeating. I am so fortunate in so many ways. This is very difficult for me but I am surrounded by supportive friends, family, neighbors, work colleagues and am not facing the added stress of inadequate finances or insurance. I cry a lot but have many good times too. I still play tennis and cherish every hour I have with Nate. I want him to know that I will miss him terribly but that I will be ok – he does not have to suffer on my account. I think he knows that intellectually but just as it takes time for me to adjust to all of this, I think it takes time for him to truly accept that as well.

Sent: Wednesday, October 31, 2007 11:34 AM

Today I am emailing you from Tallahassee Memorial Hospital. After the lovely weekend with Erika, Leigh and Marissa home to celebrate Erika and Leigh’s engagement and Erika’s 27th birthday, we have had another roller coaster week. During the first of the week, Nate was very unncommunicative, fatigued and in pain. Looking back on it now, I realize a lot of that was probably due to the chemo he had had on the previous Thursday but at the time I felt lonely and sad. Those of you who called, know he did not want to talk at all or only briefly. You know how I felt.

Last Thursday we went in for his new chemo regimen and met with the oncologist first. He changed his pain meds. After a very long day of chemo, Nate was feeling better (in response to the steroids) and I was encouraged since we had a new pain plan too. Thursday night he had bad diarrhea all night and on Friday the vomiting began. Our dear friends, Marika and Abe Spevack arrived on Saturday. I had no idea how bad things were going to get and having them here was life-saving. They have been through chemo with others and have many wonderful practical ideas plus Nate and I both feel completely comfortable with them. So we stumbled through Saturday and Sunday, thinking things would improve. Instead things only got worse. Nate could keep no meds down at all, including the meds for nausea and pain. His lymph nodes in his neck “blew up” and his neck became stiff and sore. His blood pressure dropped and his heart rate increased. In addition he started developing a number of scary cognitive symptoms. At first he said he could not think straight, then he could not read, then he started hallucinating and twitching. Of course we did not know if it was the chemo or the pain meds. On Monday I called the oncologist’s office and was told to push gatorade since his low blood pressure was due to dehydration. The nurse was not sure why he was having so many cognitive symptoms. That afternoon, we had an appt with the radiation oncologist. Nate was hallucinating in the waiting room. I asked the nurse what was going on and she said it was the pain meds. Although we wanted to slowly reduce the pain meds to help clear his thinking, we couldn’t since he was not keeping anything down. We tried another oral nausea med to no avail. We did discover (at Marika and Abe’s suggestion) that heat helped his back pain and his neck pain so we were doing heating pads and chemical heat strips. By Tuesday morning, we all agreed that something more needed to be done. He was becoming more and more dehydrated and making less and less sense. So Tuesday starting at 7 am I started trying to make something different happen (suppositories for nausea since he could not keep any oral meds down, bring him into the office for intravenous hydration were some suggestions). It was a very long and frustrating day. It took hours for the nurse to call us back. Then her suggestion was a new pain med. I told her that we had to stop the vomiting and get him hydrated that was number ONE and I was getting very scared. I was ready to take him to the ER (I did not really want to do that since I knew he would just sit there for hours). Finally they agreed around 11:30am to hospitalize him. She said it would be a while because they had to find a bed. I asked what did she mean by awhile? She said, longer than 20 minutes. I said that was fine, but if it was going to be 6 hours, we needed an interim plan until a bed became available. She assured me that it certainly would not be that long. Suffice it to say, 6.5 hours later (after more phone calls, and literally bringing Nate to the hospital and waiting in the family waiting area for a room), he was finally in the hospital (talking incoherently) with an IV. ARRGGHHH - another great day dealing with our health care system.

The good news is that within an hour, Nate started making sense. The doctor on call is our oncologist and he came in, in the evening. He said the cognitive symptoms were due to the pain meds. He probably got too much, and then when he couldn’t keep anything down at all, he may have gone into a type of withdrawal which would have only exacerbated the problem. His white blood count is very low due to the chemo so he is very susceptible to getting very sick (it is not good to be in a hospital where all the really bad bugs are). Fortunately he was not running a temp but they put him on antibiotics to be safe. This morning he was much better. He is sleeping a lot (he has a morphine drip which he controls) and we still need to get to a place where he stops vomiting. But at least he is reasonably comfortable and making sense when he is a wake and most of the twitching has stopped. I don’t know how long he will be here. My guess is they may want his white blood count up a bit too but I do not know how long that takes. Abe is still here with me which is such a help. We also rented an electric bed which we had moved into our family room. That way when Nate comes home, he can lie down and be comfortable, watch TV or a movie, and still be with family or friends who are around.

At this point, I want to call off the chemo and call in hospice. I read the research article that provides the data for this chemo regimen. Basically, as many as 75% of the patients were initially “helped” by the regimen (defined as getting better or not getting worse) after two cycles. However, only half of those went on to the next two cycles because the other half died! So basically, in the study 25% of the people who went through this got more time. However, the cycle is two chemo sessions one week apart, two weeks to recover and then the cycle starts again. Even if it helped, he would be essentially spending 3-4 months sick as a dog to get 3-4 months? Plus, I keep thinking of those poor patients who were sick as a dog for two cycles and then died before they could get two more (obviously it did not really work). The last months of their lives must have been hell. It just does not seem worth it. I am ready to get hospice involved, make him as comfortable as possible, and make the most and best out of whatever time he has left. I know this was where Nate was last night too. The oncologist is ok with this but wanted to wait until Nate was feeling better before we made the final decision. That seems sensible but I don’t think we are going to change our minds.

Sent: Friday, November 09, 2007 12:01 PM

Last Friday Nate was feeling well enough to leave the hospital and we transitioned into Hospice. We both feel this is the right thing to do. Over the weekend we had a hospice transition team to help us and it was quite amazing the help we received. I already had a bed in place, but a transition shower bench, bedside table and walker arrived on Saturday along with a visit from a hospice nurse who started getting Nate’s pain and nausea under control. Meds were quickly called into the pharmacy and if the pharmacy did not have it, hospice found a pharmacy that did and called me to tell me where to get it. Early this week we met our regular team, two nurses who switch off and a social worker/family counselor. In four days, a nurse has been to the house 3 times. They problem solve with us about pain management (we now have a pain patch so he gets pain management even if he throws up) and managing the gastrointestinal effects of both the pain medication and the remaining chemo. We now have a wheel chair and oxygen in place. We have “back-up” meds in place (like nausea suppositories – something we never managed to get when Nate was throwing up constantly with the chemo) so we don’t have to be trying to find something in the middle of the night. We can call them anytime day or night which is very reassuring. No one ever puts you to voice mail and you always talk to an actual person. They deal with the doctor’s office for any needed prescriptions which is great as far as I am concerned. I was so angry at always being shunted to voice mail and getting very little real help during the chemo, that having them deal with the doctor’s office is great. I guess I just can’t get over why it takes moving to hospice to get some sort of real care when chemo can be so amazingly difficult.

Before we left the hospital we asked the oncologist questions about what we might expect. He said Nate should continue to improve as the chemo wears off. November could be a good month for him. After that, things may deteriorate but of course the rate is unknown. I asked him if he thought the cancer would move to vital organs and that would kill him. He did not think that would happen. Rather, the oncologist thought Nate would just get weaker and weaker, sleep more and more until he just did not wake up. I found this comforting. I guess I was worrying that it would go to his brain and he would act crazy or it would go to his liver and he would be in excruciating pain. Anyway, it was good to be able to clarify some of this to prepare for the time ahead.

We have decided that his family and close friends need to come and visit as soon as possible, while Nate can enjoy their company. Nate called many family members and friends himself. Our big house (which Nate wanted) is coming in handy with all the visits planned in the coming weeks. We will have all his children and grandchildren here for Thanksgiving – a neighbor has kindly offered their home (since they will be out of town) so we can accommodate everyone. Hopefully we can have a family portrait made.

Nate and I have moved down to Marissa’s bedroom which is on the ground floor. We have his hospital bed in the family room where all the action is. At night we still enjoy the closeness of sleeping together.

Our good friends, the Spevacks saw us through the transition to Hospice. Two of Nate’s daughters – Kathy and Karol - arrived last Tuesday and were a great comfort to us both. Erika arrives this afternoon. We will have someone here most days through Thanksgiving week. Marissa sent us a little tape recorder to capture Nate’s stories. Nate is very tired but rises to the occasion when visitors come. He is learning to take naps as needed and not push too much. We are all trying to enjoy the time we have left and say our good-byes. There are tears but many hugs, shared memories, and laughter too. Hospice has provided us with a chaplain who met with the four of us (Nate and I, Kathy and Karol) and who will return to meet the other children in due time. He will help us plan the memorial service. We all liked him very much.

Death is something we all must face. For some of us, it will come so swiftly we won’t know it is happening and loved ones are left with the shock of our departure with no chance to say good-bye. In Nate’s case, watching him suffer has been so incredibly difficult for me. It is a relief to have all our energies focused on reducing pain and suffering and making the most of the time he has with us. This is still very very difficult but in the end, I will be blessed with so many opportunities to build stronger bonds with those who love Nate and I will be left with no regrets other than losing my best friend, my lover, my soul mate.

Sent November 23, 2007

Thanksgiving wishes to all. We have been blessed by many visitors and gifts of flowers, food, books, calls, emails, and cards. All of Nate’s children and grandchildren were here for Thanksgiving. And over the last few weeks, we have managed to record many of his wonderful stories.

Unfortunately, on Tuesday before Thanksgiving, I could no longer manage Nate’s pain at home. The hospice nurses were doing their best but our oncologist’s office would not call them back and provide assistance in a timely manner. It was the same frustrating lack of help that we received during Nate’s chemo. I had not wanted to retain our oncologist as Nate’s physician when we moved into Hospice (I wanted to go back to Nate’s primary care doc) because I felt the oncologist’s office was so unresponsive. However, I went along with the plan since the Hospice nurses would be calling the oncologist’s office, not me. However, even the Hospice nurses’ requests were not being responded to quickly and poor Nate was being left with increasing levels of pain and I was frantic. The whole point of going into Hospice was to help him die with dignity and with as little pain as possible. I felt I was failing him. I honestly do not understand how an oncologist’s office can be so unresponsive to patient’s needs when the patients are so sick either from the cancer itself or from its treatment. So we decided to admit Nate to Hospice house and seek the services of the Hospice physician. Once we got to the Hospice house, I learned that I would need to speak to our oncologist and explain that I wished to have the Hospice physician take over Nate’s case. As the physician of record, our oncologist arrived at the Hospice house to write Nate’s “orders” and I met with him and explained that we needed someone that could respond to our needs in a more timely manner and that we wished to change doctors. He quickly agreed to the new arrangement.

The Hospice staff handled this difficult situation in a very professional manner. I was assured that we had the right to the physician of our choosing. At the same time, they never belittled or undermined our oncologist. I thought this was a difficult situation for them and us (and the oncologist) and I was impressed with their approach and professionalism.

Nate is still at the House. The first pain management plan – a revision of his previous plan- did not work well so a new plan was started today. He seems to be doing much better so I am encouraged. We will see how he does tonight – the early morning hours have been very difficult for him. If he continues to do well, I think he can come home in the next few days. When he comes home, he will return to the care of Nate’s primary care physician – who has always been a knight in shining armor as far as we are concerned. Our primary care doc will regularly consult with the Hospice physician so I am hopeful that Nate will continue to get the kind of comfort care he needs in the coming weeks.

We did manage to get a family picture of all the children and grandchildren with Nate in the garden of the Hospice House. There was also a lot of sharing of memories, worries, tears, hopes and dreams. Family bonds were strengthened and I was supported by the power of love and the resilience of the human spirit that surrounded me.

At the moment, everyone has gone their separate ways except our youngest daughter who is staying with me until Monday. As Nate gets weaker and weaker, I am wrestling with how I can manage to care for him alone. I have decided to hire some help which I hope to have in place by Monday or soon thereafter. I am also comforted by knowing that his children and friends are more than willing to return to help at a moment’s notice and I know I will need for them to do that in the coming weeks.

Sent December 3, 2007

Nate came home from Hospice the Sunday after Thanksgiving. His pain was managed better but nights continued to be difficult. Every night around 10:30-11:30 he became very agitated with signs of delirium. On Monday night we tried Sinequan which only made his delirium worse. He was hallucinating and having all kinds of crazy nonsensical thoughts. I’ll never forget the helplessness and pain I felt as he said to me “help me, help me, you’re a psychologist, help me.” We immediately stopped the drug but it remained in his system for a while. It was heart-breaking to watch him try to organize and control his thoughts. Nate is a brilliant man whose whole life involved using his mind. He was very much aware of his cognitive difficulties and I think this distressed him more than the pain. I researched and sought all kinds of expert advice on what other drug he might take to help him but he would not try any other meds to address his agitation and delirium for fear it would make it worse. Days were ok – he mostly slept but nights were a nightmare. Watching his distress, I sometimes thought of trying a new drug and not telling him – it would be easy to do since I was giving him drugs for pain. However, these were mostly fleeting thoughts since I could not bring myself to do go against his wishes and I certainly could not lie to him.

On Monday, I had started getting some help during the day and by Wed night, I had hired night time help too since I had not slept for three nights. Nate accepted the help well and the service I hired was good about trying to keep the same people coming in so they would become familiar.

On Tuesday, during the day, Nate lucidly told me that he was ready to “check-out” – he said this was no kind of life for either him or me. We had the discussion several times over the course of the day. I called Nate’s kids and told them to come back for the weekend if they wanted to be with him one more time. Everyone planned to arrive on Saturday. By Thursday, I had Erika and Marissa change their flights to come home Friday morning and told the rest of Nate’s kids that they need to come as soon as they could.

Friday morning, Nate finally agreed to take Haldol for his delirium and he began to clear. Erika and Marissa arrived at 1 pm and Kathy around dinner time. Early Saturday morning, he was having great difficult breathing. I called hospice and they told me what meds to give him to help him breath. When he calmed, he held Erika, Marissa and my hands and told us “I love you guys so much” and then he asked for a “one-pager” on euthanasia techniques. He also said he wanted to stop all his pain meds since he thought they were prolonging his life. We all told him how much we loved him and that we wanted him to go so the suffering would end. I also told him that the pain meds were not prolonging his life and had the hospice nurse re-iterate that point when she arrived to help us.

The hospice nurse got to the house around 4:30 am and said he was “transitioning”. There was no team available to come to the house so we decided returning to Hospice House would be best. I asked Nate if that was ok with him and he agreed. Hospice transported him to the house by 8:30 am. Kathy called her sibs to tell them to come immediately and they were there by 2pm. Although he was not alert and talking, he knew all of us were there. Although I had wanted him to stay at home, the move to the Hospice House was really a better alternative. Finally, I could relax and let someone else – certainly more expert than I – manage his pain. It was a relief to see him comfortable; my only job was to sit there and hold his hand.

By 9:30 pm, we had a family meeting and decided Erika and Marissa and I should go home and then return to take the 1 am shift. Keith, Karol and Kathy would stay with him. Riding home, I told Erika and Marissa that I wondered what would happen around 10:30 pm – the “bewitching hour” as I called it. I thought either he would get energized enough to actually die or we would be waiting for another day. At home, I could not sleep. I lay there thinking about Nate, with many wonderful memories crowding in. Marissa was up writing her thoughts about her life with him. Erika woke up at 11:50 from a dream where she said Daddy was pushing her away. A few minutes before 12 Keith called to say Nate had died. As I predicted, he had become alert around 10:30pm and held all their hands. They all told him how much they loved him and that it was time for him to go. He calmed and passed away at 11:53 pm.

Erika, Marissa and I returned to Hospice House and we all stayed with Nate until around 2 am. Then we each kissed him one last time and came home.

Even when dying, Nate was a remarkable man. He managed to say good-bye to both sets of his children, giving us all great peace. I also marvel at his kindness throughout his months of suffering. He was always thankful and sweet to all who tried to help him. As in life, when he decided to go he did it with remarkable efficiency. On the Saturday after Thanksgiving, he had completed our “November agenda” – seeing all family and friends, recording stories, getting family pictures. One week later, he was dead. Even the hospice staff were surprised at the rapidity of his decline. When he made up his mind to go, there was no stopping him.

For me, this has been an exceptionally difficult journey. I worked so hard to get Nate the care he needed and minimize his suffering. But, at every step I faced my own powerlessness. No matter how hard I tried, I could not prevent his suffering. I had to be satisfied with the knowledge that he suffered less because of my help and advocacy but often this was little solace for me. I desperately wanted to prevent the suffering entirely which I simply could not do.

I will be forever changed not only because I have lost by best friend, lover and soul-mate but because of the process of losing him. I have been sobered by the inadequacy of our health care system to actually care for a patient, the inadequacy of our science when it comes to palliative care, the unrelenting power of Nate’s cancer, and the limitations of all of us who tried to help him. I also marvel at the dedication of those who choose to work for Hospice and the ways in which this experience has strengthened me and Nate’s children, cementing the bonds between us. The outpouring of support and help we have received from family and friends is a tribute to the power of love and the resilience of the human spirit. I thank each of you for your help on this difficult journey.

We are planning a memorial service here in Tallahassee for Nate the weekend of December 15-16. We have purchased a domain - celebratenate.com – where you can express your thoughts and get information on his memorial service and Nate’s wishes re contributions. As soon as the website is up and running I will let you know.