Hospital Diaries Part 5

The second bone marrow test for MDS is set for May 10th. We are told we just have to wait two days (until the 12th – the Friday) and we will finally get results.

Hosptial 5On April 10th, as I predicted in my head, I get a call in the morning from the specialist’s office asking where my husband was. Despite my asking each GI head doctor if they would stay on top of this, someone dropped the ball. This meant no one told the hematologist in hospital that Bob was still there and that he had to do the bone marrow test himself that day.

I call Bob and told him he’d need to get in touch with the hematologist there and tell him that he was still in hospital and see if he could get the bone marrow test done.

The hematologist comes to see Bob and says he will try to do the bone marrow test on Thursday the 11th or, at the latest, on Friday, the 12th.  Now have to wait until Monday for a definitive answer. The test was done on the Friday.

woman head in handsThen, just when you think you can’t take it anymore someone else throws a punch to your gut. My husband was in bed and my step daughter and I were in his room. The hematologist comes in and sits down in a chair next to the bed. He is gentle but has confirmed this with a colleague and he feels compelled to let us know (better we should not have to wait through the weekend – and to that I would agree). Bob has MDS – medium to aggressive.

I can see Bob’s chin quivering. I go to his bed and lie beside him and hold him. I start to cry as the doctor explains the diagnosis but I am bereft and can’t hear what he’s saying. Then I’m sobbing uncontrollably. Bob is whispering to me that it will be o.k. as tears well up in his eyes. My poor, strong stepdaughter is also visibly upset but takes over, asking questions. The doctor leaves at some point and one of Bob’s friends walks in to visit him. My stepdaughter and I ask if he will stay with Bob for a few minutes and he does. They start chatting and I can tell he’s making Bob feel better, or at least Bob is up to putting on a brave face.

My stepdaughter and I leave the room and I fall apart. She grabs my shoulders because I’m sure I will collapse. Bob’s nurse – an extremely competent young man – leads us to an area called the Quiet Room. He sits and talks to us. He brings us water. My stepdaughter tries to comfort me, and her, because my husband, her father, will be living with this blood disease for the rest of his life. If the specialists can’t start treating his MDS (myelodysplastic syndromes) quickly it will, definitely, become Leukemia. In the end that will probably happen anyway.

Roller CoasterThe problem  is that Bob’s pain is still a huge issue. He needs an operation or to stop eating and be put on TPN for months until the white blood cell count is within normal range. Until then surgeons are reluctant to agree to surgery. It is too high risk. It could cause an infection he can’t fight off and he could die. So we move into the weekend with few doctors available to talk to and a diagnosis that will change our lives, most of all Bob’s. And Bob continues to eat because Doctor Number 3 is still pushing food at him.

We think this is the worst that can happen, but we’re wrong. The roller coaster ride just keeps on going.

Hospital Diaries Part 4

Hospital signI realized a while ago there was no way I could make this a daily blog. My days are full – waking in the morning with worry followed by doing the bare minimum to keep a house in order. I pay bills and feed the cat. The phone rings constantly and e-mails drop into my inbox asking “How is your husband? Please give us an update.”

We are actually in our third admission to hospital now. Since March 11th my husband has been home a total of six days:


  • Initial hospital admission March 11th 
  • Discharged March 18th 
  • Readmission March 20th (my husband and stepdaughter’s birthday)
  • Discharged April 29th
  • Readmitted May 3rd
  • Today is May 11th. He is still in hospital.


There is no continuity of care. Every one to two weeks a new doctor heads up the GI hospital team. I have asked and been told that it is the same with many other teams. I asked and was told that it is not because this is a teaching hospital. This happens at most hospitals. I don’t have statistics but I can say I believe this lack of continuity in care puts patients in jeopardy. I believe that lives can be lost because of it. I have talked to doctors who believe this too. They ask me to speak out about this; to tell our story. So that’s what I intend to do. I will start by telling you this: There were times I thought my husband would die. He lost 20 pounds in hospital until the day his own, personal GI doctor rotated onto the team for one week. In that one week he saved my husband’s life.


DoctorThough he didn’t know my husband personally, Doctor Number 1 keeps my husband comfortable (drugged up to dull the pain) while the doctor tries to catch up on many caseloads. In my husband’s case this means going through charts dating back 30 plus years. Because of the complexity of the situation he consults with specialists – GI and Hematology. He is unsure of treatment because the low white blood cell count that complicates things. He is supportive. Then he is gone.

March 25th Doctor Number 2 rotates on. I was concerned about this lack of continuity of care, which is why I asked the nurse to contact the team the night before (see my last post – Part 3). But no doctors arrived that day.

The next morning I go to the hospital and stop at the nurses’ station to ask if I can speak to the weekday coordinator. She is standing there. I introduce myself. She says she will come down to my husband’s room.

She arrives and I tell her our story to date, particularly about the issue of the inappropriate hospital room and the issue with the nurse the night before. She is supportive.

PaperMarch 26th
I pick up the brochure about the Patient Relations and dial the number of the woman I know – The Patient Relations Specialist. I leave her a voice-mail message. Later that day she comes to my husband’s room and we have a long chat. She documents the details of our situation. I ask for a family meeting with his medical team. She says she will set one up.

The meeting is set with the new GI doctor, the floor Coordinator and the Patient Care Facilitator. Both our daughters have come from work, out of town, to be present at the meeting. The doctor begins by outlining my husband’s case. I try hard to bite my tongue. I know the case. I need him to know what’s going on and we are the people who can bring him up to date quickly. He takes a breath and I dive in.

I tell him the issues quicker than a resident can update him. Some of the details he knows. Some he’s not aware of. I ask if he will be available to talk to me twice a week. He tells me he will and that’s always how things go. The coordinator looks at me and nods her head. So I tell him about the incident the night before and the fact that we waited all day and no one showed up. His composed demeanor is obviously rattled then states he will be available. And he keeps that promise. I see him a few times over the course of his two weeks on the case.

PhoneMarch 28thEaster weekend is approaching. My husband is getting weaker. The pain is escalating. I call him in the morning and he mentions that one of the staff is talking about whether he will be sent home for Easter weekend. I freak out again thinking they are going to discharge him and he’s too sick. But it is a misunderstanding on my part. I am assured by doctors that he will not be going home.

April 2nd – My husband can no longer eat by mouth. The doctors decide to give his stomach another rest. But this time he needs nutrition because he is losing ground quickly. I look at his once thin but healthy frame. His eyes are ringed with dark circles. His legs are like spindles. He sleeps a lot because he is on so much pain medication they can’t seem to keep up with the pain anymore so they’re giving long-acting medication plus timed injections and “breakthroughs,” an injection in between the timed injections.

IVHis veins are collapsing from all the IVs and they start a Total Parenteral Nutrition (TPN)  This will sustain him without food by mouth. But it is a thick concoction and is difficult on the veins, especially my husband’s that are already in poor shape after weeks of medication and saline solutions via IV . Eventually they have to stop giving him TPN via IV as the area is becoming red and sore so they order a Peripherally Inserted Central Catheter (PICC) line  (which he still has as of today when I am writing this). After the PICC is inserted and TPN starts he won’t need to put food into his sick and painful stomach. Then he will gain strength. And I see this happen after less than a day. Today we are hopeful. Some days not so much. This is a roller coaster ride that just doesn’t seem to have an end. But today, he’s o.k. I think.

On Monday, April 8th Doctor Number 2 is gone and Doctor Number 3 is scheduled to visit my husband. When I go to the hospital I ask my husband if he’s seen the new doctor. He hasn’t. Later that day I ask the nurse when the doctor is coming and she says he should be around soon. Still later I ask again and a nurse checks the chart. She informs me that the doctor apparently came to see my husband then wrote in his chart that the patient was not in his room.

My husband hears this and is livid. The only time he left the room was to go for a walk and sit by the elevators to get exercise and wait for us to come up. Not knowing my husband (again, lack of continuity in care) the doctor apparently walked right by him.

April 10th: The hematologist came to talk to us on March 21st when my husband was in emergency. We are told the results of my husband’s bone marrow test, to see if he does have MDS,were inconclusive. There are four separate tests. One said Yes. One said Maybe. Two said No. They will have to do another bone marrow test after the medication he was on is fully out of his system. This should be four weeks from when he stopped taking the medication (March 11th). It is scheduled for April 10th. The GI Team says they will let the hematology doctor know if my husband is still in hospital and they will do the test  in hospital April 10th and we will have the results of the test two days later – on the Friday so no waiting over the weekend. We have been counting the days (I will explain more about this in my next post).

Most days I ask to see Doctor Number 3 and am told he will be there in the afternoon. This goes on during the course of the next two weeks. The doctor never comes when I’m there. I am not doing my due diligence as a caregiver. I should be insisting on seeing him but I can’t because my days and nights are physically and mentally occupied trying to keep my husband from the torture he’s enduring.

Hospital bedFor the past two weeks I have been lying next to him on the bed to help him until the painkillers kick in. It becomes our daily ritual as we hold hands and cry together. He whispers “it’s o.k. it will be o.k.” over and over and over again. And we cry. This is the first time in over 30 years that I have ever seen him cry. It won’t be the last time.

Doctor Number 3 has told my husband that he can start eating again. He tells my husband he can be discharged when he starts eating 1,200 calories a day. But each mouthful sets off the pain. And every day we watch the same horror story repeat itself over and over and over again. My stepdaughter implores him not to eat the food but my husband feels he should follow doctor’s orders.

One day a full roast beef lunch arrives. He eats it and gets violently ill. The pain is so bad there are several breakthrough injections. I beg him to stop eating. He finally relents because he can’t take the pain anymore. So we agree that he won’t put anything past his lips that needs to be chewed. And I hope that this will help him.

April 15thDoctor Number 3 is gone. We are told that my husband’s personal GI specialist will be heading the team this week. I come into the hospital to find my husband in pain again. All he has had is liquids. The nurse brings pain medication. I lay on the bed with my husband. I look at the nurse and say “Can you page the GI team? Can someone please see what’s going on?” She says she can’t. They’re busy.

They’re busy. They’re busy. They’re busy. I hear this all the time.

child coloringI think about when my daughter was in grade school. She was a wonderful student; so smart and sweet. Her teacher was overwhelmed with a large class and one problem student in particular. She thought my small child could help her tame the wild child and she put their seats next to each other. My daughter came home bruised. I asked her what happened. She said the boy was hitting her. She said it was o.k. I said it wasn’t. I went to talk to the teacher. I asked her why my daughter was sitting next to this boy who was beating her up. She told me my daughter was a good influence on the boy. I told her I didn’t care about any of the kids in her class except for my daughter and she had better move my daughter out of harm’s way immediately.

The doctors are busy. I don’t care. All I care about is my husband. He is sick. He is dying. Yes, you can die from pain and I know that he will if someone won’t listen.

My husband is lying on the bed his left shoulder on the pillow his right arm draped over the bed railing.  I am holding him whispering in his ear to hopefully give him strength. He can’t talk. I look up. I think no one could have timed this more perfectly. I asked for this and it happened! His personal GI doctor is standing there. He looks at us. I see four residents. Their mouths are opened. They are staring. The doctor looks at my husband and says, “Robert, you don’t look very well” (yes, my husband has a name, but he prefers to be called Bob, but this doctor always calls him Robert – which is fine because, finally, someone who knows him as a person – not a patient number – is here). I look up and say, “the last doctor thought it was a good idea for Bob to eat 1,200 calories.” His doctor looks at us and says “then I don’t think you should be eating.”

I have a small amount of hope now. Someone who has seen my husband a few months ago is confronted with a man who has lost 30 pounds in total since they last saw one another. He knows my husband. He is busy but he cares. And he cares because he knows my husband as a patient AND a person . But I think, if he didn’t come there at that time Bob would have died because the medical care system is broken and continuity of care is no longer a priority.

So I will say this now and I will repeat it again because this has to stop. Continuity of care is imperative. Without it people can die, may have died, because the lack of continuity of care. We were lucky. Some people aren’t so lucky.

Our story isn’t done yet.  I have struggled for weeks against doing this; writing our story. I am tired. I feel most days like I can’t do this anymore but I keep doing it because I have to. I have to keep advocating, and I have to write about it too. The universe is somehow telling me that we can’t finish this journey unless I document it. And there is so much more to tell because our journey isn’t over yet.