Gotcha dinner!
10:30 last night till 6:30, up once, is how long I slept. Wow. No foot or hand pain waking me up. I am sure the 10 steroids helped. Once up - steroid high. Ran vacuum through whole house, did some laundry, swept front porch of Matthew debris, cleaned kitchen all before 10 in my nightgown. Then showered and did a bit of shopping with Kristi. Nap for several hours. Bill had to wake me up to get ready for dinner. Today was 11 years ago Kristi and Matt got custody of Sasha. Went to Hotto Potto for dinner to celebrate. And also, Denny wanted to try there. He loved it so you know it must be good. Owner knows Kristi and girls quite well because they love it too and go quite often. She even had special desserts served to us to celebrate Sasha's gottcha day.
Have some questions about my dates for the next couple of weeks getting ready for my transplant. Here we go! A lot here but remember, this is my memory board for years to come. I will be doing an autologous transplant as I am my own donor.
October 16 - Some prep at home
October 17 - Head to Moffitt Cancers Center
First appointment at 9 AM - 20 tubes of blood will be drawn. OM
Measures blood counts, kidney & liver function, past exposure to diseases
10 AM - Pulmonary Function test - measures lung function
10:45 - EKG - measures heart function
11:15 - Chest x-ray - checks for abnormalities or infections in lungs
1:00 - ECHO cardiogram - test pattern of heartbeats
Day complete
October 18 - 8:00 AM - Appointment with Dr. Booth-Jones - Phychologist
11:00 AM - Meet with Teresa - social worker
1:00 - Meet with Kelley - Transplant Nurse Specialist
2:00 - Meet with PA - physical examination- assist doctor with medical care before,
during and after transplant
3:00 - PET scan (taking lots of anxiety pills for this one)
Day complete
October 19 - 8:45 AM - Arrive at pre-op area
9:45 AM. - Bone marrow biopsy
Day complete. Hope to head home!
October 25 - 10:00 AM - Transplant class (1 1/2 hours)
1:00 PM - Meet with Teresa - Advance Care Planning
1:40 PM - Appointment with Dr. Ochoa - Primary Transplant Doctor
Will discuss all test results. Finalize the plan for transplant
Sign forms to continue.
Day complete. Head home!
Central line/Apheresis Catheter placement - thin, flexible tube placed in a large vein in my chest. Used to collect stem cells, blood samples, fluids, chemotherapy, medicines. Double-lumen catheter is used for autologous transplant patients. Not sure of date for this yet.
November 4 - 7 - Stem cell mobilization- to stimulate bone marrow to produce more stem cells for collection. Will be given several dozens of Filgrastim (aka - Nuepogen). Shot for four days. Can be more if not enough stem cells collected.
Stem cell collection - usually occurs around 4 days after the start of mobilization Blood tests will be preformed to determine if cell count is high enough for collection. If high enough, will be cleared for apheresis (stem cell collection). Catheter is attached to apheresis machine. Machine uses filters to remove stem cells from blood using the catheter. Takes about 8 to 10 hours while lying in bed. If number of cells collected is too low, need to repeat another day. Sten cells are frozen upon collection till ready to infuse back to me.
Not sure of some of these dates yet. Will know more once we meet with Dr. Ochao regarding the test results. But here are the next steps.
Conditioning therapy - received prior to transplant. I will receive high dosage of chemotherapy
Stem cell transplant - Day Zero. - will receive stem cells 24-48 hours after conditioning therapy. Cells are thawed and infused through my central line catheter similar to a blood transfusion. Length of time depends on how many bags my cells are stored in and volume collected. Nurse monitors closely. May slow down to treat any possible reactions should they occur.
Engraftment- production of new blood cells from transplant. Usually takes place two to four weeks after transplant. Beginning of my recovery of my immune system. Complete recovery can take months in an autologous transplant. I will be most at risk for complications waiting for engraftment. Will be watched by transplant team during this critical period to prevent and treat any life threatening complications such as infection.
As of now, we have been told I will be in the hospital about 30 days. I may be considered for early discharge but have to be within 1 hour of Moffitt Cancer Center. We are hoping to get into Hope House near Moffitt.
Bill will be my primary caregiver throughout this process. Needed 24 hours a day throughout the transplant. He will be my communicator, transporter, medicine giver, supporter, coach and most of all, the love of my life. The main reason I am chasing my life and not giving up.
A lot of information here I know. Don't know if you made it to the bottom of this or not. But again, this is for me to remember what I have gone through to get to my happy life again. And maybe someday, someone with Multiple Myeloma may read this blog and it may help them along the way.
Quote:
I am not going to waste a second chance!
Saturday, October 8, 2016
Friday, October 7, 2016
Fever on the Bayou!
10 steroids and 7 cyclophosphamide (chemo) pills this morning. My Friday dose. Next Friday will be the last time I take these 17 pills. And after Monday's Zometa drip and next Friday's pills, I will be finished with my cycles that Dr. Sarriera felt necessary for me to be able to go forward with the stem cell transplant. Pretesting start on 17th at Moffitt Cancer Center in Tampa. I will cover all this separately in another post soon. So are my steroids going to help me sleep tonight or keep me up? That remains to be seen. If the feet and hands have anything to do with it and the steroids make me super tired, I may be sleep walking!
Matthew never made it with the fury they said he would to our area. We are so glad. I was up walking several times last night. Would look out window and nothing. All we have are limbs, leaves and a full pool. Bill drained several times. He and Denny skimmed piles of debri off pool. Best part of Matthew was that Sandy and Denny's flight was cancelled and they came over to spend the night with us instead of staying in their condo. I pictured Sandy and I sitting close together on the couch listening to howling winds, pounding rains and trying not to holler once Matthew hit us. Sandy with her glass of wine and me with my jug of water. Only noise was a frog that croaked all night. Bill made us a great breakfast this morning. Bill found a puzzle for Denny (now back in the box). Sandy and I were pj lazy for a long time. Tramped over to Michelle and Gery's for a bit. Then did something we haven't done for awhile. Played Spades. Fun. Of course, Sandy and I beat Bill and Denny. Usually play several hands but we had something interrupt called me and neuropathy. What a wonderful time with special, special friends. They decided to go back to their condo tonight as the curfew was lifted for Casselberry. No demand there either. Funny though as I do not hear that noisy frog. Wonder if Sandy took it along.
I do know the steriods can make me weepy. We all know Bill loves his music. One of his songs that we would sing loudly to is "Fever on the Bayou" sang by Rodney Crowell. Check it out Bob Curwood! It is our happy Florida song. Our make us smile song. Our sing together song. Our so glad we retired song since we moved to Florida even though the words have nothing to do with retirement. Our song!!! Well, it came on today and even though we sang it, it wasn't with the happiness that makes me smile. It made me want to cry. We will sing this again in the future with that happiness but right now will just sing it.
Quote:
If it wasn't for cancer, I'd say I had the perfect life but if it wasn't for cancer, would I realize it?
10 steroids and 7 cyclophosphamide (chemo) pills this morning. My Friday dose. Next Friday will be the last time I take these 17 pills. And after Monday's Zometa drip and next Friday's pills, I will be finished with my cycles that Dr. Sarriera felt necessary for me to be able to go forward with the stem cell transplant. Pretesting start on 17th at Moffitt Cancer Center in Tampa. I will cover all this separately in another post soon. So are my steroids going to help me sleep tonight or keep me up? That remains to be seen. If the feet and hands have anything to do with it and the steroids make me super tired, I may be sleep walking!
Matthew never made it with the fury they said he would to our area. We are so glad. I was up walking several times last night. Would look out window and nothing. All we have are limbs, leaves and a full pool. Bill drained several times. He and Denny skimmed piles of debri off pool. Best part of Matthew was that Sandy and Denny's flight was cancelled and they came over to spend the night with us instead of staying in their condo. I pictured Sandy and I sitting close together on the couch listening to howling winds, pounding rains and trying not to holler once Matthew hit us. Sandy with her glass of wine and me with my jug of water. Only noise was a frog that croaked all night. Bill made us a great breakfast this morning. Bill found a puzzle for Denny (now back in the box). Sandy and I were pj lazy for a long time. Tramped over to Michelle and Gery's for a bit. Then did something we haven't done for awhile. Played Spades. Fun. Of course, Sandy and I beat Bill and Denny. Usually play several hands but we had something interrupt called me and neuropathy. What a wonderful time with special, special friends. They decided to go back to their condo tonight as the curfew was lifted for Casselberry. No demand there either. Funny though as I do not hear that noisy frog. Wonder if Sandy took it along.
I do know the steriods can make me weepy. We all know Bill loves his music. One of his songs that we would sing loudly to is "Fever on the Bayou" sang by Rodney Crowell. Check it out Bob Curwood! It is our happy Florida song. Our make us smile song. Our sing together song. Our so glad we retired song since we moved to Florida even though the words have nothing to do with retirement. Our song!!! Well, it came on today and even though we sang it, it wasn't with the happiness that makes me smile. It made me want to cry. We will sing this again in the future with that happiness but right now will just sing it.
Quote:
If it wasn't for cancer, I'd say I had the perfect life but if it wasn't for cancer, would I realize it?
Thursday, October 6, 2016
Matthew!
Sitting here with Sandy, Denny and Bill listening to pouring rain. Waiting for Matthew to visit. Sandy and Denny will stay with us instead of their condo. Hurricane party. Wish I could drink with them. We prepared as much as we could. Patio is completely cleared off and stuffed in garage. Thanks to our neighbor Gery for helping Bill. We had a lot of stuff out there. Will be making some changes when we are able to move it back. Don't know where Matthew is right now or when he is
coming to Casselberry.
My appointment for the Zometa drip was canceled for tomorrow. Matthew's fault. Had meds to pick up then so we had to go today to get them. Cancer Center closed from 3 today until sometime late Friday early Saturday. Matthew's fault.
Same pattern of walking the floors for my feet and exercising my hands last night again. From our bedroom, around the dining room table, through the living room, through the kitchen and again. Moffitt can't come soon enough for us. And this is not Matthew's fault. 😚
Quote:
Fair went out the window 3 months ago.
Sitting here with Sandy, Denny and Bill listening to pouring rain. Waiting for Matthew to visit. Sandy and Denny will stay with us instead of their condo. Hurricane party. Wish I could drink with them. We prepared as much as we could. Patio is completely cleared off and stuffed in garage. Thanks to our neighbor Gery for helping Bill. We had a lot of stuff out there. Will be making some changes when we are able to move it back. Don't know where Matthew is right now or when he is
coming to Casselberry.
My appointment for the Zometa drip was canceled for tomorrow. Matthew's fault. Had meds to pick up then so we had to go today to get them. Cancer Center closed from 3 today until sometime late Friday early Saturday. Matthew's fault.
Same pattern of walking the floors for my feet and exercising my hands last night again. From our bedroom, around the dining room table, through the living room, through the kitchen and again. Moffitt can't come soon enough for us. And this is not Matthew's fault. 😚
Quote:
Fair went out the window 3 months ago.
Wednesday, October 5, 2016
A better me!
Someday I am hoping to scream that. This cancer has made me change. Sometimes to a person that I don't like. Sometimes to a person I don't know. Sometimes to a person that is still me. Glad I have an understanding husband, understanding family and understanding friends. Someday I will be me again. Someday this ugly thing called cancer will be removed from me. Someday.
Last night was the same. Up and down. Walking. Sleeping on the couch. The way my night is starting tonight, will be more of the same. Someday this too will be a memory.
Passed the dental clearance today. One step checked off towards the transplant.
Quote:
I need to start living life differently!
Someday I am hoping to scream that. This cancer has made me change. Sometimes to a person that I don't like. Sometimes to a person I don't know. Sometimes to a person that is still me. Glad I have an understanding husband, understanding family and understanding friends. Someday I will be me again. Someday this ugly thing called cancer will be removed from me. Someday.
Last night was the same. Up and down. Walking. Sleeping on the couch. The way my night is starting tonight, will be more of the same. Someday this too will be a memory.
Passed the dental clearance today. One step checked off towards the transplant.
Quote:
I need to start living life differently!
Tuesday, October 4, 2016
Dental clearance!
11 PM to bed last night. Was up maybe twice walking my beaten path. Then back to sleep. Just keep praying this neuropathy soon at least eases up some. Please!
Starting to prepare for my 3 days of pretesting that begins October 17 at Moffitt in Tampa (start some things at home on the 16th). Who knew that I would have to have a dental clearance? Have to have a letter from my dentist saying my mouth and gums are free from signs and symptons of infection. Interesting, huh? Have that appointment tomorrow.
Sandy and Denny had us over for dinner. Good meal. They are really concerned about the possibility of hurricane Matthew messing up their flight home. Just have to wait and see. The hype reminds me of PA and the hype of snow storms. Here there is always a shortage of water in the stores. In PA, it was a shortage of toilet paper.
Quote:
Stay organized. Break down tasks in to smaller steps!
11 PM to bed last night. Was up maybe twice walking my beaten path. Then back to sleep. Just keep praying this neuropathy soon at least eases up some. Please!
Starting to prepare for my 3 days of pretesting that begins October 17 at Moffitt in Tampa (start some things at home on the 16th). Who knew that I would have to have a dental clearance? Have to have a letter from my dentist saying my mouth and gums are free from signs and symptons of infection. Interesting, huh? Have that appointment tomorrow.
Sandy and Denny had us over for dinner. Good meal. They are really concerned about the possibility of hurricane Matthew messing up their flight home. Just have to wait and see. The hype reminds me of PA and the hype of snow storms. Here there is always a shortage of water in the stores. In PA, it was a shortage of toilet paper.
Quote:
Stay organized. Break down tasks in to smaller steps!
Monday, October 3, 2016
Jury duty!
Hands were really bothersome last night. Had me up walking the floors during arm and hand exercises. Not much help. Got a lot more sleep then have been getting though. Each day as these meds kick in, I know my body is getting weaker, more fatigued, less energy. All this to get me ready for a transplant.
This morning I told Kristi that I was angry because I can't be the grandmother I want to be right now, the mother I want to be right now, the wife I want to be right now, the daughter, sister, friend I want to be right now. Her response was -"Good! You should be angry. It's not fair but you're doing your best and 6 months from now it will all be good."
I am angry because cancer choose me. I am angry because cancer still exists. I am angry because I didn't take better care of myself. I am angry because I am putting my family in this predicament. I am angry because cancer interrupted the smoothness of my life. I am angry because I am irritable, moody, weepy and sometimes cause pain for the people I love the most. I am angry because of the waiting. I am angry because I feel guilty for feeling angry. Anger is part of the ride. Anger is a part of the cancer experience and you need to feel it sometimes. And as Kerri said to me a little while ago, use your anger Mom to fight back.
And one more, I am angry because I was chosen for jury duty on November 14th and can't serve. 😉
Quote:
Anger is a signal - one worth listening too!
Hands were really bothersome last night. Had me up walking the floors during arm and hand exercises. Not much help. Got a lot more sleep then have been getting though. Each day as these meds kick in, I know my body is getting weaker, more fatigued, less energy. All this to get me ready for a transplant.
This morning I told Kristi that I was angry because I can't be the grandmother I want to be right now, the mother I want to be right now, the wife I want to be right now, the daughter, sister, friend I want to be right now. Her response was -"Good! You should be angry. It's not fair but you're doing your best and 6 months from now it will all be good."
I am angry because cancer choose me. I am angry because cancer still exists. I am angry because I didn't take better care of myself. I am angry because I am putting my family in this predicament. I am angry because cancer interrupted the smoothness of my life. I am angry because I am irritable, moody, weepy and sometimes cause pain for the people I love the most. I am angry because of the waiting. I am angry because I feel guilty for feeling angry. Anger is part of the ride. Anger is a part of the cancer experience and you need to feel it sometimes. And as Kerri said to me a little while ago, use your anger Mom to fight back.
And one more, I am angry because I was chosen for jury duty on November 14th and can't serve. 😉
Quote:
Anger is a signal - one worth listening too!
Sunday, October 2, 2016
Another decent night's sleep.
Slept good again last night. Only had a 1 1/2 hour around 2 that I was awake. Slept then till around 8. Feet and hands still burning, tingling and painful but getting more tolerable. Keep praying the neuropathy is healing. Used the Wise Men cream several times. Jury is still out.
Had a small cookout for Sandy and Denny with Kristi, Matt, girls, mom, Michelle and Gery. Was nice despite the rain. Hard, pouring rain. Drain the pool type rain.
Quote:
Cancer cannot cripple love, shatter hope, kill friendships!
Slept good again last night. Only had a 1 1/2 hour around 2 that I was awake. Slept then till around 8. Feet and hands still burning, tingling and painful but getting more tolerable. Keep praying the neuropathy is healing. Used the Wise Men cream several times. Jury is still out.
Had a small cookout for Sandy and Denny with Kristi, Matt, girls, mom, Michelle and Gery. Was nice despite the rain. Hard, pouring rain. Drain the pool type rain.
Quote:
Cancer cannot cripple love, shatter hope, kill friendships!
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