Today’s blog is difficult for me to write as our journey continues to be quite an emotional rollercoaster. Cathy’s pain and nausea is now under control. She still has no appetite and isn’t drinking much. Everything continues to be a delicate balance. Tests show that Cathy’s kidneys are in some distress and her blood pressure is quite low. Full kidney function and physical reserves are required to consider chemo treatment. The reality is that Cathy does not have either. Cathy and I have always said that quality of life is of key importance. Quality of life is our real focus now and, with the extent and aggressiveness of Cathy’s cancer, chemo will not improve her quality of life. People at the hospital are beginning to look at possibilities for getting Cathy home or in local hospice care next week. We’ll see what the options are.
We are excited and happy that Christy is able to visit us. We made some quick change of plans and, if flights go well, Christy will be in Boston tomorrow afternoon. Christy’s visit is important to us. David was in Maine recently and the plan is that he will potentially come again to visit next weekend.
Cathy continues to connect with the nursing staff. Connecting with people is a real gift Cathy has. I came to the room after dinner last night to find that a nurse had purchased lifesaver candies for Cathy in order to ease her dry mouth. Early this morning, one of the nurses came in to our room and said “I’m upset because they didn’t schedule me to support you today.” Then around noon the same nurse came back and said with a big smile “Your current nurse gets off at 3pm and I told them that I’m taking over after she leaves so I am scheduled to support you! I also brought some nice smelling lotion from home to rub on your arms too.” Amazing!
Saturday, August 28, 2010
Friday, August 27, 2010
August 27, 2010
Today was the best day yet for Cathy’s pain and nausea control. It seems like the irritation from the digestive system has eased. Cathy drank quite a bit of high protein drink too. We hope that her appetite continues to improve. I brought a couple of pieces of pizza to eat in her room but I couldn’t convince her to eat any of it.
We met with the oncologists tonight. There are some additional tests that need to be completed over the weekend and we need to consider options over the next couple of days. As a result, we won’t finalize plans until Monday.
We met with the oncologists tonight. There are some additional tests that need to be completed over the weekend and we need to consider options over the next couple of days. As a result, we won’t finalize plans until Monday.
Thursday, August 26, 2010
August 26, 2010
Today was a better day. Twenty four hours ago we started switching Cathy from patch and oral pain medicine to an IV pump system. The conversion went better than I expected and Cathy’s pain control is much better now. It isn’t perfect but it is better. Cathy is hydrated again and looks better too. The next targets are the nausea and appetite. The Dr. changed medicine to improve these two areas. It is key that Cathy begin to eat again and gain strength. It is amazing (and hard) to watch a woman, within 5 weeks, go from biking and spinning classes multiple times a week to being so weak that she cannot get out of bed to stand, even with help. Today she started to drink high protein energy drinks again.
We learned a few things over the last 24 hours. We got pathology results that tell us that Cathy’s cancer is in the Carcinoma family rather than the Sarcoma family. Cathy’s cancer is unique and that is why the diagnosis has been difficult. The only reason it is important knowing the cancer is a Carcinoma is to be able to find the best chemo possible. We came to Dana Farber to work with the Sarcoma experts and we are going to meet on Friday with the Carcinoma experts to determine the best path forward.
I am taking a break tonight from the hospital. Some friends graciously offered that I could stay at their house near Boston. I can’t tell you how much I appreciated a quiet Japanese restaurant meal followed later by a great shower. Now I’m ready to sleep without the hourly interruptions of nurses. Friends and family are precious.
Prayer requests:
- Return of appetite and the gain of strength
- Wisdom in determining future treatment
- Thanks for the continual support of all of you
We learned a few things over the last 24 hours. We got pathology results that tell us that Cathy’s cancer is in the Carcinoma family rather than the Sarcoma family. Cathy’s cancer is unique and that is why the diagnosis has been difficult. The only reason it is important knowing the cancer is a Carcinoma is to be able to find the best chemo possible. We came to Dana Farber to work with the Sarcoma experts and we are going to meet on Friday with the Carcinoma experts to determine the best path forward.
I am taking a break tonight from the hospital. Some friends graciously offered that I could stay at their house near Boston. I can’t tell you how much I appreciated a quiet Japanese restaurant meal followed later by a great shower. Now I’m ready to sleep without the hourly interruptions of nurses. Friends and family are precious.
Prayer requests:
- Return of appetite and the gain of strength
- Wisdom in determining future treatment
- Thanks for the continual support of all of you
Wednesday, August 25, 2010
August 25, 2010
We had a lazy, pain filled morning but this afternoon was a bit better. We met with the ‘pain management’ people this afternoon too. It turns out that Cathy will be managed by the Department Head. I think the Dana Farber Oncologist might have pulled some strings for Cathy! The pain management people decided that it would be best to consolidate all of the different pain medications into one medication given by an IV type pump. This method would be more controllable and they also have portable units that Cathy could use at home. The goal is to reduce the pain so that Cathy feels better and feels like eating. We hope she can also have a bit more energy. We will move to the pump overnight and we hope that goes well.
The pain management people were very interested in my very organized and detailed records of Cathy’s medications and times. There was a conversation between the pain Dr and Cathy about medications that went like this: Dr. “Your husband has excellent records that we can use to determine how best to help you. Is he always this organized?” Cathy simply smiled and said “Yes.” The Dr. replied “Well, in this case it is good but I could understand if his level of organization was kind of difficult to live with normally.” And, to my amazement, Cathy didn’t say a single word but she smiled and shook her head in acknowledgement!
The pain management people were very interested in my very organized and detailed records of Cathy’s medications and times. There was a conversation between the pain Dr and Cathy about medications that went like this: Dr. “Your husband has excellent records that we can use to determine how best to help you. Is he always this organized?” Cathy simply smiled and said “Yes.” The Dr. replied “Well, in this case it is good but I could understand if his level of organization was kind of difficult to live with normally.” And, to my amazement, Cathy didn’t say a single word but she smiled and shook her head in acknowledgement!
August 24, 2010
I know that there is a lot of interest in how the visit with doctor at Dana Farber went. We spent almost three hours in the consultation. Some of the three hours was for the doctor to study Cathy’s medical file. It is a little frustrating but we do not yet have a clear characterization of Cathy’s cancer. It is very unique. In some ways, it acts like a Sarcoma. In some ways it acts like a Carcinoma. They will spend the next 36 hours trying, one more time, to figure out what we are dealing with. We may not have a detail characterization at the end of the studies. We will, however, be able to create a chemo treatment to cover both kinds if there is no additional characterization.
The doctor recognized how aggressive Cathy’s cancer is and had a clear urgency to begin chemo treatment. This is exactly what we felt so we are pleased with this. We have decided that the chemo treatment will be as aggressive as possible while maintaining quality of life. We will likely begin chemo on Thursday in Boston and continue future treatments in Portland.
Cathy was in quite a bit of pain again during the doctor visit. As a result, Cathy was admitted into the Brigham and Women’s Hospital here in Boston. The consultation was with a doctor at Dana Farber and Brigham’s is connected directly to them. The plan is to get Cathy’s pain managed better, to give her fluids, to begin Chemo and to return home on Thursday or Friday.
I try to find humor each day. During admission, the nurse needed to ask Cathy a lot of questions. One of the questions was regarding Cathy’s personal things as they want to make sure that Cathy leaves the hospital with everything she came in with. Dentures: no, jewelry: no, glasses: no, pillows: 2 and so on. At one point, Cathy said, gesturing toward me ‘Put him on the list too as I want to go home with him’. We all laughed and went on with the next set of questions.
The doctor recognized how aggressive Cathy’s cancer is and had a clear urgency to begin chemo treatment. This is exactly what we felt so we are pleased with this. We have decided that the chemo treatment will be as aggressive as possible while maintaining quality of life. We will likely begin chemo on Thursday in Boston and continue future treatments in Portland.
Cathy was in quite a bit of pain again during the doctor visit. As a result, Cathy was admitted into the Brigham and Women’s Hospital here in Boston. The consultation was with a doctor at Dana Farber and Brigham’s is connected directly to them. The plan is to get Cathy’s pain managed better, to give her fluids, to begin Chemo and to return home on Thursday or Friday.
I try to find humor each day. During admission, the nurse needed to ask Cathy a lot of questions. One of the questions was regarding Cathy’s personal things as they want to make sure that Cathy leaves the hospital with everything she came in with. Dentures: no, jewelry: no, glasses: no, pillows: 2 and so on. At one point, Cathy said, gesturing toward me ‘Put him on the list too as I want to go home with him’. We all laughed and went on with the next set of questions.
Monday, August 23, 2010
August 23, 2010
Today started out hard but, after getting Cathy some IV fluids, things went a lot better. We consulted with the radiologist and decided to cancel Cathy’s second radiation treatment for the day. Cathy has had a lot of radiation and one more wouldn’t make a difference. We’ll give her system a break and let things begin to get back to normal. The Dr. said that the pain should be reduced in a week or two. That will also help her feel like eating more.
We drove to Boston and Cathy had virtually no pain. I’d like to say that it is because the roads had no bumps but that wouldn’t be true. I’d like to tell you it was solely because I am a brilliant driver but that wouldn’t likely be true either. I think we hit the right combination of meds supported by my brilliant driving. We are staying in a hotel within a couple of miles of Dana Farber. That will allow Cathy to ease into the day and not be too stressed for the appointment. Let’s all pray for a good night sleep.
We drove to Boston and Cathy had virtually no pain. I’d like to say that it is because the roads had no bumps but that wouldn’t be true. I’d like to tell you it was solely because I am a brilliant driver but that wouldn’t likely be true either. I think we hit the right combination of meds supported by my brilliant driving. We are staying in a hotel within a couple of miles of Dana Farber. That will allow Cathy to ease into the day and not be too stressed for the appointment. Let’s all pray for a good night sleep.
Sunday, August 22, 2010
August 22, 2010
Yesterday was a mixed day for Cathy. Today was a better day. Cathy was awake most of the day and was able to drink more protein drinks. We have moved to protein drinks because her digestive system is irritated by the radiation. Liquids seem to go better. We are thankful that nausea was less today too. We both did take a nice Sunday afternoon nap to recharge some. It was nice to be able to relax and chat a bit together.
It is good to have mom and Al here to help. It is nice not to have to think about the lawn being mowed and to have someone else keep Cathy company for a change. I have asked them to stay for the next week and they have graciously agreed.
Tomorrow will be a big day with two radiation treatments, an IV fluid session and a drive to Boston for our consultation on Tuesday. We will stay overnight at a hotel so that Tuesday is not too strenuous for Cathy. I’ll do my best to navigate around as many bumps as possible.
Prayer requests:
- Thanks for a good Sunday
- Continued pain and nausea control
- Continue weight stability and strength
It is good to have mom and Al here to help. It is nice not to have to think about the lawn being mowed and to have someone else keep Cathy company for a change. I have asked them to stay for the next week and they have graciously agreed.
Tomorrow will be a big day with two radiation treatments, an IV fluid session and a drive to Boston for our consultation on Tuesday. We will stay overnight at a hotel so that Tuesday is not too strenuous for Cathy. I’ll do my best to navigate around as many bumps as possible.
Prayer requests:
- Thanks for a good Sunday
- Continued pain and nausea control
- Continue weight stability and strength
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