I'm excited to blog round TWO of the stem cell transplant experience! I might as well be excited since I have no choice but to forge through and make the best of it. I have Dale by my side so no matter what happens, I will be able to tolerate it and pull through better than before.
We moved to Seattle two weeks ago. We started at the SCCA (Seattle Cancer Care Alliance) House. It is an extended stay hotel for cancer patients. The apartments are small and have shared kitchen and laundry facilities. We ultimately wanted a place with our own kitchen and laundry. The following week we moved into the Pete Gross House which is an apartment complex for cancer patients. We had been on the waiting list and were able to move in more quickly than we had anticipated. It was great except for the two very low budget make shift twin beds. We purchased a memory foam mattress topper from Costco and with some 2x4 blocks to hoist up the lower bed and by pushing the two together we now have a quite comfortable king size apparatus to call our bed for a few months.
We have been able to come home for weekends thus far. One more weekend to come home and then we're stuck for 2-3 months depending on my heart. If it can behave and not cause trouble when I throw up I will be in business. I had a 24 hour heart monitor on this week to document activity and the team will come up with a conclusion in the next short while. My last transplant resulted in a temporary/external pacemaker being placed and a terrible infection within a week down the lead of the device (due to my lack of an immune system) and an enormous hole in my chest. We would like to avoid a replay of that event so we'll see what the conclusion will be.
I have met with my doctor Leona Holmberg. She is the same doctor I had before. She is an expert in treatment of Multiple Myeloma Cancer. She specializes in Stem Cell/Bone Marrow transplantation and is an expert in immunotherapy and transplantation immunology. She is a quite a character but a good doctor and I have great confidence in her abilities.
I have met with a myriad of professionals. I'm on what's called the "ROSE" team. I have a team scheduling coordinator...cardiologist, pulmonologist, nutritionist, social worker and a dentist,
I've had an MRI, a chest x-ray, skeletal x-ray, EKG, echocardiogram, I'm about to have a Pet Scan/CT Scan this week. What's the difference between a Pet Scan and a CT Scan you may ask? A Pet Scan stands for positron emission tomography and takes an in-depth look at tissues and organs on a cellular level. CT scan is computerized tomography combines multiple x-rays together and is good for viewing bones and soft tissue.
I had to do a 24 hour urine analysis last week. It's always a pain to do when you have appointments all day because you have to carry around a big orange jug and it must be kept cold in a cooler. We bought a disposable Styrofoam cooler to keep it in. We decided to keep the cooler in the car in the parking garage and Dale said he would run down and get it when I needed it. Right before my MRI I had to go but thought I could wait. By the time they got me in there and told me it would be at least 45 minutes and they were going to have to put things on my chest I decided I HAD to go first. They said no problem until I told them I was on a 24 hour urine and I had to go out to the waiting room to tell my husband to go down to the parking garage to get my jug and bring it up so I could go......This would take SEVERAL minutes.....the nurse was understanding but the MRI tech, a young guy, rolled his eyes and sighed with resignation. There really was no alternative...they would have to wait.
I had a bone marrow biopsy yesterday and it was a nightmare! We read the preparation paperwork beforehand and it required fasting of food and drink for 7 hours prior. Procedure was at 1:00 and I did that. They told me that fasting was only for IV sedation and I was going to get conscious sedation. Well, I starved and thirsted for naught but that wasn't the worst of it. They gave me an Ativan to sedate and relax me......no problem......and a sucking device called fentanyl to assist in pain reduction. I was also given a local to help with pain.
It was like I had no anesthetic at all. The pain was excruciating! I was crying and screeching and moaning throughout the procedure. I've had several BMB's in the past and this was by far the worst.
When it was over I breathed a sigh of relief and have only a slight sore spot on my backside. Apparently it was a beautiful sample of bone and bone marrow so I can be grateful for that.
It's a beautiful day in Seattle! I have NO appointments today. We picked blackberries in the city this morning. We got a few slight grins from the robotic city dwellers that walked past us. We're going to the zoo this afternoon with Eric and Rebecca and our little 2 year old grandson, Parker!
We moved to Seattle two weeks ago. We started at the SCCA (Seattle Cancer Care Alliance) House. It is an extended stay hotel for cancer patients. The apartments are small and have shared kitchen and laundry facilities. We ultimately wanted a place with our own kitchen and laundry. The following week we moved into the Pete Gross House which is an apartment complex for cancer patients. We had been on the waiting list and were able to move in more quickly than we had anticipated. It was great except for the two very low budget make shift twin beds. We purchased a memory foam mattress topper from Costco and with some 2x4 blocks to hoist up the lower bed and by pushing the two together we now have a quite comfortable king size apparatus to call our bed for a few months.
We have been able to come home for weekends thus far. One more weekend to come home and then we're stuck for 2-3 months depending on my heart. If it can behave and not cause trouble when I throw up I will be in business. I had a 24 hour heart monitor on this week to document activity and the team will come up with a conclusion in the next short while. My last transplant resulted in a temporary/external pacemaker being placed and a terrible infection within a week down the lead of the device (due to my lack of an immune system) and an enormous hole in my chest. We would like to avoid a replay of that event so we'll see what the conclusion will be.
I have met with my doctor Leona Holmberg. She is the same doctor I had before. She is an expert in treatment of Multiple Myeloma Cancer. She specializes in Stem Cell/Bone Marrow transplantation and is an expert in immunotherapy and transplantation immunology. She is a quite a character but a good doctor and I have great confidence in her abilities.
I have met with a myriad of professionals. I'm on what's called the "ROSE" team. I have a team scheduling coordinator...cardiologist, pulmonologist, nutritionist, social worker and a dentist,
I've had an MRI, a chest x-ray, skeletal x-ray, EKG, echocardiogram, I'm about to have a Pet Scan/CT Scan this week. What's the difference between a Pet Scan and a CT Scan you may ask? A Pet Scan stands for positron emission tomography and takes an in-depth look at tissues and organs on a cellular level. CT scan is computerized tomography combines multiple x-rays together and is good for viewing bones and soft tissue.
I had to do a 24 hour urine analysis last week. It's always a pain to do when you have appointments all day because you have to carry around a big orange jug and it must be kept cold in a cooler. We bought a disposable Styrofoam cooler to keep it in. We decided to keep the cooler in the car in the parking garage and Dale said he would run down and get it when I needed it. Right before my MRI I had to go but thought I could wait. By the time they got me in there and told me it would be at least 45 minutes and they were going to have to put things on my chest I decided I HAD to go first. They said no problem until I told them I was on a 24 hour urine and I had to go out to the waiting room to tell my husband to go down to the parking garage to get my jug and bring it up so I could go......This would take SEVERAL minutes.....the nurse was understanding but the MRI tech, a young guy, rolled his eyes and sighed with resignation. There really was no alternative...they would have to wait.
I had a bone marrow biopsy yesterday and it was a nightmare! We read the preparation paperwork beforehand and it required fasting of food and drink for 7 hours prior. Procedure was at 1:00 and I did that. They told me that fasting was only for IV sedation and I was going to get conscious sedation. Well, I starved and thirsted for naught but that wasn't the worst of it. They gave me an Ativan to sedate and relax me......no problem......and a sucking device called fentanyl to assist in pain reduction. I was also given a local to help with pain.
It was like I had no anesthetic at all. The pain was excruciating! I was crying and screeching and moaning throughout the procedure. I've had several BMB's in the past and this was by far the worst.
When it was over I breathed a sigh of relief and have only a slight sore spot on my backside. Apparently it was a beautiful sample of bone and bone marrow so I can be grateful for that.
It's a beautiful day in Seattle! I have NO appointments today. We picked blackberries in the city this morning. We got a few slight grins from the robotic city dwellers that walked past us. We're going to the zoo this afternoon with Eric and Rebecca and our little 2 year old grandson, Parker!
Pam, it sounds like you are taking one day at a time of this adventure. Some days better than others. Hang in there. I have been thinking about you, thank you for the update. We were over at the SCCA House last Sunday for my husband's appointment. It was a quick trip. Hugs to you.
ReplyDeleteJoan Curtis
Love to you my friend! Sorry about the BMB experience!!! :-(
ReplyDeletePam, I love that you are giving details of both the good and the bad. Your BMB sounds horrible but I got a good chuckle about your bed apparatus. We continue to pray for you. Enjoy being able to see your grandson more. Love you friend.
ReplyDelete