So for the past week Mr. B has not been feeling well. He has been experiencing repeated episodes of nausea and vomiting/retching. So he was also not drinking or eating much during this time. It started with maybe one or two times a day and increased by Friday to 4 or 5 times a day. So I called his nurse. She checked with his doctor and they wanted him to go to the hospital to be looked at.
For a change we were seen pretty quickly in the ER but it took until midnight before they hooked up an IV drip to hydrate him. They also gave him anti-nausea meds by IV. A few hours later they made him eat some crackers and drink some juice. Since he didn't throw that up, they sent him home.
And we are back at square one. He started the day with the same thing and has had at least 3 episodes again. It's not like he's nauseated all day long. It comes on very suddenly and takes so much out of him. All he does is sleep all day. I expect an
On June 2 & 3, Mr. B had a very rough time. He was not eating or drinking and felt very nauseated. After spending those two days in bed, I asked him if he had taken his temperature at all during this time. His answer was no so I ran for the thermometer. His temperature was 102F. I told him that we needed to go to the hospital and since he knew he was in no shape to sit for 5 or more hours in the ER waiting room, he asked me to call for an ambulance. I had also called the oncall hematologist and was told that she would call ahead to the hospital. When we arrived, they put him in a reverse isolation room and within an hour or so, he was seen by a doctor. The plan was to start him on an IV antibiotic. By 3 am they still had not started the IV so I decided to go home since I was confident he was in good hands. I crawled into bed at 4 am and at 8 am the phone rang waking me up. It was Mr. B. The hospital had released him since his fever was down and he was given oral antibiotics. Now he needed a ride home. I was shocked since I still felt he was not doing very well but what can you do? It doesn't help to argue with the hospital.
On the same day, he had a blood transfusion and chemo treatment scheduled. I called his nurse to let her know that he was on antibiotics. She said that they would cancel his chemo but he should still go for the blood transfusion. So a few hours later we headed to Cancer Care for his blood transfusion. Mr. B looked terrible and for the first time since this whole nightmare started on Jan 5, he asked me to get a wheelchair to take him to the treatment room. So I knew that he was definitely not feeling well. When the transfusion was started he was warned that he might feel cold from the blood because it was kept cold. Mr. B was more than cold, he was actually shaking. The nurse had to provide him with warmed blankets. He was also extremely nauseated and the nurse had to provide him with anti nausea drugs. She even had a doctor call in a prescription for a stronger anti nausea drug. Then part way through the second unit of blood, Mr. B had to use the washroom. He was so weak that both myself and the nurse had to help him to get there. After the transfusion was over, the nurse wheeled him down to the car and told both of us that we should not be afraid to go back to the hospital. But we went home instead. I had a horrible night with him. I told him that he was not supposed to get up to go to the washroom unless I was with him. He got up 3 or 4 times and each time I was terrified that he was going to collapse and break some bones.
On Tuesday morning, June 5, I got up with him. I got him to take his anti nausea pill and tried to get him to eat a few crackers so that he could take his antibiotic. He actually kept falling asleep while he was eating the cracker. I decided that he was in very bad shape and I told him that I was going to call for an ambulance. He asked me not to do that and I burst into tears. I knew I had to do it and yet I hated going against what he wanted. After the paramedics had loaded him on the stretcher, he started complaining of chest pain. I was surprised since he had not mentioned it to me at all.
At the hospital, the doctors took all of the information down and did some blood tests. The result? Sepsis or infection in the blood, a very serious condition. The doctor felt that his previous bout with pneumonia was never cleared up and now had moved to his blood stream. He was one very sick man. Once he was moved to a ward, they started doing tests to find out why he was having pain in his chest. It took until Friday afternoon when a bone scan was done to determine that Mr. B had two fractured ribs. Likely the result of being moved from our couch to the stretcher by the paramedics. It was not that they were rough with him, but that his bones were so weak and fragile that something as minor as a chest compression could break a rib.
Mr. B's recovery time in the hospital was very slow. For two weeks he received IV antibiotics and high levels of Fentynal and morphine for the pain. At one point they changed from morphine to a drug called Diluadid. Those 3 days were horrible for Mr. B. He had a severe reaction to this pain med and was agitated, extremely emotional, hallucinating, and seeing visual disturbances. He was miserable but once they switched him back to morphine, his mind returned to normal.
During this time in the hospital, we had to meet with so many people. I tried to be at the hospital in the morning so that I could be there when the doctors and students did their rounds. I found that it was a good way to keep up to date on Mr. B's condition right from the source instead of asking the nurses. We also had to meet with the physical therapist, the occupational therapist and the home care coordinator. After Mr. B had been in the hospital for 2 weeks, we also had to meet with a kidney doctor because his kidney function had diminished to only 40%. She said that if he was not able to continue on with the chemo treatments we would have to consider dialysis treatments soon. Poor Mr. B was devastated.
On June 20, Mr. B was discharged from the hospital. Before he came home I had asked for a hospital bed and a wheelchair. What a difference having a hospital bed was!! I had barely put the sheets on the mattress and he went for a 3 hour nap. Mr. B had not sleep in our bed since mid January when his back and rib pain started. Now that his pain was under control with proper pain meds and he had a bed that he could adjust to be at the proper angle, he was again enjoying a good night's sleep.
Being hospitalized this time took a lot out of Mr. B. Now I would have to consider him as an invalid. No longer can I trust him to be alone for fear of him having a fall. He now needs a walker to get around even in our home. For longer distances, he will need a wheelchair. Something as simple as having a shower totally wears him out. I worry about him constan
So I was right to worry about Mr. B.
On Monday, May 14 we arrived at Cancer Care for a meeting with a dietitian. Our volunteer driver dropped us off a little early so we decided to wait in the library. It's a nice quiet place to wait between appointments and the volunteers take good care of the patients there. Mr. B made a beeline (pardon the pun *g*) to one of the easy chairs in the back room looking like death warmed over. We had about 20 minutes before the appointment so I suggested that I go by myself to see the dietitian and let Mr. B rest. Right after this appointment he had his chemo treatment so I thought it was better that he be rested for that. When I returned from the meeting, he seemed a little better and told me that he had become very dizzy and nauseated during the ride to Cancer Care. I was concerned about how he would be for the chemo treatment but as always, he perked up as soon as the chemo nurses started to fuss over him.
That night Mr. B still was very congested and I was still very concerned. I had to work out of the home the next day and I asked him before I left if he was feeling ok. He assured me that he was and as usual, I believed him. I'm really beginning to think that he has a very poor concept of how he is really feeling.
When I got home from work I made him take his temperature just in case it was turning into an infection. No temperature so I thought we were ok. Later that evening while I was chatting on the phone to my sister, I could hear Mr. B's lungs seemed to have a rattle while he was sleeping. I touched his arm and asked if he was having problems breathing and he said yes. I quickly got off the phone and asked him if I should call an ambulance and he said while gasping for air, "Call 911". And so he had his first ambulance ride since this nightmare started and I suspect that it won't be his last one.
The diagnosis was pneumonia and he was kept in the hospital for 6 nights. He is still coughing and it sounds very much like bronchitis. The hospital started him on an inhaler so hopefully that will eventually help. We have an appointment with the doctor tomorrow and will learn if there is any new course of action. Mostly it would be good to find a solution to his pain. He's finding it very hard to get comfortable because of the pain. And there's nothing that seems to help it, not even the morphine.
I will post more after we meet with the doctor.
Feb 27/12: First chemo treatment with Velcade (infusion) and oral Dexamethasone. (Will continue weekly)
Mar 2/12 Blood Test Results: M Protein Level 66, Lambda Free Light Chain 243.75
Mar 21/12: Hospitalized with multiple blood clots in both lungs (Pulmonary Emboli)
Mar 30/12 Blood Test Results: M Protein 55, Lambda FLC 565
Apr 23/12: Added new drug to chemo, Cyclophosphamide
Apr 27/12 Blood Test: M Protein 73 This concerns me that the protein numbers went up after the first treatment with the new drug. Although Mr. B had been very nauseated that week from the cyclophosphamide and hardly ate or drank anything all week. He also lost 5 pounds. From what I understand, dehydration can cause the numbers to go up. I'll need to clarify that with the doctor.
May 8/12: Mr. B seemed to have more problems with his chemo treatment from the day before. He said his body hurt all over. By Thursday afternoon (May 10) he was starting to experience chest pressure. His voice started to sound very heavy like it had when he had the PE so he called his nurse on May 11. She advised him to go right to emergency at the hospital. After 8 hours of waiting to be seen by a doctor, an X-ray and CT scan were done. No blood clots were present but the doctor did say that there were two new lesions on his spine that had not been there on the previous CT scan done on Mar 21. This was devastating to Mr. B because the doctor said his cancer was getting worse. I tried to remind him that we did know that there were more lesions from the first MRI that was taken in Feb. It was possible that the earlier CT scan did not pick them up at that time and although they might have gotten a little worse, that didn't mean that they needed to be treated. The doctor discharged him from the hospital but he is still experiencing chest congestion. It's possible that he has a chest cold but it certainly is worse than most people get. We'll talk to his nurse tomorrow when Mr. B goes for his chemo treatment.
And the fun continues.....
They say that most people find out that they have Multiple Myeloma because of a catastrophic event that takes place. For example, they might break a leg, or have severe back pain and need extensive tests to find out the cause. This usually happens because the bones become so brittle that they fracture very easily. In Mr. B's case, he found out "by accident" or I should say, his doctor found out by accident when he conducted the yearly blood tests. Dr. C said there were some things that looked abnormal in his tests and wanted to send Mr. B for some more blood tests. Then came the full body x-rays, the 24 hour urine collection and finally an office visit where Mr. B was told he would need to see a hematologist/oncologist. The word "cancer" was mentioned but Dr. C tried not to panic Mr. B who in turn stuffed that bad word down in the deep dark crevices of his mind and never even mentioned it to me. I only found out that there was a possibility of cancer after the hematologist told us the "good news" on January 31, 2012. The timeline for all of this was from October 2011 to Dec 30, 2011 when Mr. B was called to get his blood tested again at our local cancer center. His M Protein level at that test was 58 g/L. We received a call a few weeks later to let us know our appointment had been set up with the hematologist on January 31.
During the time after the December 30 blood test, Mr. B started experiencing some strange bone pain. Mr. B's job requires him to do shift work. On January 5, he was getting up from his afternoon nap and had a shooting, searing pain in his right shoulder. It troubled him so much that he called in sick that night. It continued to bother him but he also started experiencing more pain in his ribs and back. By January 20, he was not able to sleep lying down in bed and so started sleeping in his easy chair or propped up with pillows on the couch.
On January 31, Dr. D said that because Mr. B's M Protein was so high, 79 g/L, she was pretty much positive that he had Multiple Myeloma but she would do a bone marrow biopsy to have the diagnosis confirmed. She also said that she felt he didn't need any treatment at this time but would need monitoring to make sure things were not getting worse. Dr. D assured us that if she were to get a cancer, this would be the one she would want since people could live 10 or 20 years. Mr. B told her of the bothersome pain that he had been experiencing since January 5 so she decided to send him for an MRI. We left that appointment feeling uplifted that maybe things weren't as bad as we thought they were. Boy were we wrong.
We refer to Feb 17 as "D Day" for Diagnosis Day.The bone marrow biopsy test results came back with 76% plasma cells in the bone marrow. There should be less than 3% of plasma cells in a healthy person. Dr. D said that Mr. B needed to start chemo treatments immediately and that she would be sending him to a radiologist to discuss the results of the MRI and possible treatment options. We were stunned! How could things change so quickly less than three weeks later? Dr. D wanted Mr. B to sign the consent forms to start his treatments within the next few weeks. Mr. B was so overwhelmed that he asked for the weekend to think things over before he signed the papers. A week later he signed the forms and then started on his weekly chemo treatments of an injectible drug called bortezomib and pulse treatment with dexamethasone. The pulse treatment was a high dose of this steroid for 4 days on the drug and 4 days off for one month. Then he was to take the same dose once a week on the same day as the bortezomib.
(More to come.)