My therapy!
Well, we got the call. The call we wanted but not wanted. We sort of knew which way the call was going to go. Dr. Nair sort of knew how the call would go once he cut the lump out last week.
Dr. Nair's nurse, Cathy, called and said that she conferred with him and he said the results of my biopsy was consistent with Myeloma. Consistent with Myeloma. What exactly does that mean was what I asked. She said Dr. Nair will discuss that with me next Tuesday at my appointment. Consistent with Myeloma means it is Myeloma rearing up it's ugly head (pun intended) again.
I contacted Desiree, my favorite oncology nurse, right away and asked if Dr. Sarriera had received the results and what he was saying about the results. His comment was - our plan is not working. Our plan needs to be adjusted again. Our plan needs to knock out this damn Myeloma. We have an appointment with Dr. Sarriera on Friday to see what his plan is for me. It's so hard to believe that only 6 months after my transplant, this is happening again. BUT, one thing that I have stressed several times in my blog, Myeloma can come back at anytime. That is not curable but it is treatable. So Dr. Sairriera, Abby, Desiree, Dr. Nair, Bill and I will find a plan for me to treat this horrible disease called Myeloma. I am not ready to give it up. I am not ready to call it quits. I am not ready to sit back and let this get the better of me or Bill. Yes, we are very upset with this new news. Yes, we are not taking it so well. Yes, we have to wait a few more days till we see Dr. Sarriera. Yes, we are scared. Yes, we have each other to lean on. Yes, we are praying this new bout of Myeloma will be treated very quickly.
Questions. Lots of questions. How can my numbers look so good just 3 weeks ago? How can my Myeloma be so minute that it's not measurable? How can my M-spike be 0? How can my light chains be in the normal range? How can my IgE be almost normal? How can all this be so good and now this? How does that make sense?
Once I calmed down from the call, I headed to my sewing room. My therapy room. I sewed most of the afternoon. I am working on some blocks from a You Tube person that I found. She is awesome and I love doing her projects. Just small simple things. My therapy is my sewing. Can't think about Multiple Myeloma and concentrate on sewing a straight 1/4 inch seam.
Quote:
Nothing can dim the light that shines from within.
Tuesday, May 30, 2017
Thursday, May 25, 2017
Number 97.
This is another one of my long posts for remembering. Thanks for reading it if you do.
Today I had my surgery to remove the lump on my head. Got to the hospital around 9:30 as requested. That was 2 hours before scheduled surgery. I got signed in and Bill was assigned NUMBER 97. No names shouted out in the family waiting area. Great idea. Of course, it's been a long time since I have had surgery and the prep is really different. First I had to remove all clothing and wash with these cleansing cloths even though I showered last night and this morning using their cleansing soap. Had to wash myself with my regular bath soap. Then lather up with their cleansing soap. Turn off the shower and wait 3 minutes and then shower off their cleansing soap. That was last night and this morning's shower. Also, had to remove my nail polish on my fingernails and toenails. So they gave me 3 packs of cleansing cloths, back at the hospital now. Two in a pack. Use one for one of my arms and the other one for my other arm. Next pack, use one for my chest and the other one for my back. Third pack, use one for one of my legs and the other one for my other leg. Then put on this large blue paper gown. Looked like it had pockets in it. Open side to the back. Open side to the back. Open side to the back. LOL. Saying this because I always forget which way they tell me to put the open side. Been that way forever. Crawled in bed and in comes another nurse's aid. This time she had me brush my teeth. Okay, did this at home. Then she gave me Iodine Qtips, one for each nostril, to swab my nose. Did this twice. Did not do this at home. ;) Then wrapped my legs in paper compression socks. Temperature taken. Blood pressure monitor hooked up. EKG tabs placed on chest and abdomen. None of this I minded because I knew it was an in and out surgery. Not staying for 30 days. Not being 2 hours from home. Sure made it easier on me.
Next was my nurse, Brenda. She took vitals, asked questions. Preparing me for the anesthesiologist. He came in then and reviewed my case. Blood work, EKG etc. I did question him about having anesthesia with my immune system not in full tact yet. He assured me that it was considered and would be fine. Signed his papers. Brenda then started my IV with Sodium Chloride for hydration and added a mild sedative in my IV. Then NUMBER 97 was brought back. Brenda then wrote YES on the lump and on my neck so Dr. Nair would get the right area. This made me laugh and wonder at the same time.
Now this was one of my favorite things in the prep room. Again, remember it's been a long time since I have had surgery. Was getting cold and Brenda hooked my big blue paper gown up to a machine that blew hot air in the gown. Instant warmth. Loved it. Would love to have one at home. Was called a Bair Paw machine. Can't figure out why that name.
Next came the OR nurses to question me before going back for surgery. Next came the tears. Next came the anxiety. Next came the fears. Next came saying see you later to NUMBER 97. Next came another shot of the sedative in my IV. Talked a bit more to Bill. I remember OR nurses and Brenda saying it's 11:11 as the time heading to OR (this was my second next favorite thing) (Louise Curwood). Never saw the room, never saw Dr. Nair, never saw the anesthesiologist, never saw the OR nurses and never saw the time. Especially missed not seeing Dr. Nair. So nice looking.
Next came waking up in recovery. New nurse. Forget her name. Big white patch on the side of my head. Vitals taken. Cranberry juice, water and graham crackers on my tray. Then they brought NUMBER 97 back. Blood pressure dropped to 85/50. Made me lay back more and eat and drink. Wasn't long till it went back up to 115/60 (?), I think. Discussed with NUMBER 97 what Dr. Nair said after surgery (below). Unhooked me from all the monitors. Give me a pain pill. Got discharge instructions. Got dressed and took the Cadillac (wheelchair) ride to the car.
Dr. Nair visited with NUMBER 97 after the surgery. Surgery took about 40 minutes. Stitches on the outside so will have to be removed in two weeks. (Not sure how many though.) Need to make appointment with Dr. Sarriera (already have one for June 2nd). The biopsy with testing will be back in 48 hours. Being it's a weekend and a holiday it may be Tuesday till we hear. Bill (AKA - NUMBER 97) asked Dr. Nair his gut feelings about the lump since he saw it. He said he was almost certain it wasn't a cyst or wasn't fatty tissue. But not saying it's Myeloma related. Will have to wait for the test results. He also said to Bill "You were thinking along that way anyway right?" Which we were. Hard not to think along those ways. We like to have positive thoughts but not always that easy for us.
Got home around 4. Ate a bit of lunch. Bill (no long NUMBER 97) and I both slept till around 6. Had some dinner. Door bell rang; Michelle with some ice cream from Jeremiah's. Made a big bowl of it with strawberries and pineapple. 🍨 Great way to end the day.
Quote:
And sometimes against all odds, against all logic, we still have hopes and prayers.
This is another one of my long posts for remembering. Thanks for reading it if you do.
Today I had my surgery to remove the lump on my head. Got to the hospital around 9:30 as requested. That was 2 hours before scheduled surgery. I got signed in and Bill was assigned NUMBER 97. No names shouted out in the family waiting area. Great idea. Of course, it's been a long time since I have had surgery and the prep is really different. First I had to remove all clothing and wash with these cleansing cloths even though I showered last night and this morning using their cleansing soap. Had to wash myself with my regular bath soap. Then lather up with their cleansing soap. Turn off the shower and wait 3 minutes and then shower off their cleansing soap. That was last night and this morning's shower. Also, had to remove my nail polish on my fingernails and toenails. So they gave me 3 packs of cleansing cloths, back at the hospital now. Two in a pack. Use one for one of my arms and the other one for my other arm. Next pack, use one for my chest and the other one for my back. Third pack, use one for one of my legs and the other one for my other leg. Then put on this large blue paper gown. Looked like it had pockets in it. Open side to the back. Open side to the back. Open side to the back. LOL. Saying this because I always forget which way they tell me to put the open side. Been that way forever. Crawled in bed and in comes another nurse's aid. This time she had me brush my teeth. Okay, did this at home. Then she gave me Iodine Qtips, one for each nostril, to swab my nose. Did this twice. Did not do this at home. ;) Then wrapped my legs in paper compression socks. Temperature taken. Blood pressure monitor hooked up. EKG tabs placed on chest and abdomen. None of this I minded because I knew it was an in and out surgery. Not staying for 30 days. Not being 2 hours from home. Sure made it easier on me.
Next was my nurse, Brenda. She took vitals, asked questions. Preparing me for the anesthesiologist. He came in then and reviewed my case. Blood work, EKG etc. I did question him about having anesthesia with my immune system not in full tact yet. He assured me that it was considered and would be fine. Signed his papers. Brenda then started my IV with Sodium Chloride for hydration and added a mild sedative in my IV. Then NUMBER 97 was brought back. Brenda then wrote YES on the lump and on my neck so Dr. Nair would get the right area. This made me laugh and wonder at the same time.
Now this was one of my favorite things in the prep room. Again, remember it's been a long time since I have had surgery. Was getting cold and Brenda hooked my big blue paper gown up to a machine that blew hot air in the gown. Instant warmth. Loved it. Would love to have one at home. Was called a Bair Paw machine. Can't figure out why that name.
Next came the OR nurses to question me before going back for surgery. Next came the tears. Next came the anxiety. Next came the fears. Next came saying see you later to NUMBER 97. Next came another shot of the sedative in my IV. Talked a bit more to Bill. I remember OR nurses and Brenda saying it's 11:11 as the time heading to OR (this was my second next favorite thing) (Louise Curwood). Never saw the room, never saw Dr. Nair, never saw the anesthesiologist, never saw the OR nurses and never saw the time. Especially missed not seeing Dr. Nair. So nice looking.
Next came waking up in recovery. New nurse. Forget her name. Big white patch on the side of my head. Vitals taken. Cranberry juice, water and graham crackers on my tray. Then they brought NUMBER 97 back. Blood pressure dropped to 85/50. Made me lay back more and eat and drink. Wasn't long till it went back up to 115/60 (?), I think. Discussed with NUMBER 97 what Dr. Nair said after surgery (below). Unhooked me from all the monitors. Give me a pain pill. Got discharge instructions. Got dressed and took the Cadillac (wheelchair) ride to the car.
Dr. Nair visited with NUMBER 97 after the surgery. Surgery took about 40 minutes. Stitches on the outside so will have to be removed in two weeks. (Not sure how many though.) Need to make appointment with Dr. Sarriera (already have one for June 2nd). The biopsy with testing will be back in 48 hours. Being it's a weekend and a holiday it may be Tuesday till we hear. Bill (AKA - NUMBER 97) asked Dr. Nair his gut feelings about the lump since he saw it. He said he was almost certain it wasn't a cyst or wasn't fatty tissue. But not saying it's Myeloma related. Will have to wait for the test results. He also said to Bill "You were thinking along that way anyway right?" Which we were. Hard not to think along those ways. We like to have positive thoughts but not always that easy for us.
Got home around 4. Ate a bit of lunch. Bill (no long NUMBER 97) and I both slept till around 6. Had some dinner. Door bell rang; Michelle with some ice cream from Jeremiah's. Made a big bowl of it with strawberries and pineapple. 🍨 Great way to end the day.
Quote:
And sometimes against all odds, against all logic, we still have hopes and prayers.
Wednesday, May 17, 2017
50 Years Ago!
Just a quick update regarding my surgery date. Got a call from Mitzi, the scheduling nurse, today. They have me scheduled for preops on Tuesday, May 23rd at 11:15. Will take 1 1/2 hrs. The actual surgery will be on Thursday, May 25th at 11:30. I have to be there 2 hours ahead of time. Need to fast starting midnight on the 24th. The surgery will be at the ORMC. This is the hospital attached to the Cancer Center.
Today (just hit me all of a sudden) I told Jakob that it's actually 50 years ago that his Pap and I graduated. Wow. So unbelievable. So excited to be able to share Friday with Jakob. Means the world to me especially with what I have been dealing with this last year.
Quote:
You may have to fight the battle more than once to win.
Just a quick update regarding my surgery date. Got a call from Mitzi, the scheduling nurse, today. They have me scheduled for preops on Tuesday, May 23rd at 11:15. Will take 1 1/2 hrs. The actual surgery will be on Thursday, May 25th at 11:30. I have to be there 2 hours ahead of time. Need to fast starting midnight on the 24th. The surgery will be at the ORMC. This is the hospital attached to the Cancer Center.
Today (just hit me all of a sudden) I told Jakob that it's actually 50 years ago that his Pap and I graduated. Wow. So unbelievable. So excited to be able to share Friday with Jakob. Means the world to me especially with what I have been dealing with this last year.
Quote:
You may have to fight the battle more than once to win.
Tuesday, May 16, 2017
Graduation!
We arrived around 1:15 for my 1:30 appointment with Dr. Nair, oncology surgeon. They were pretty much on time calling me back. Very anxious couple of days for Bill and I waiting for this appointment even though it was only a consultation. Dr. Nair talk with me regarding the lump and then examined it. He said that Dr. Sarriera sent him a note and also had a brief conversation with him. Said Dr. Sarriera was very concerned and wanted a biopsy done on the lump. We then told him that my labs were excellent with M spike being 0 (this is wonderful for a Myeloma patient), all my light chains within normal range, my IGE near being in range etc. etc. He reread the notes again that Dr. Sarriera sent him and told us he would be right back. Was going to discussed it once again with Dr. Sarriera. He came back in and said that Dr. Sarriera really wanted this biopsy done so we needed to have the surgery schedule. Dr. Nair discussed the procedure with me saying that it would take about 30 to 40 minutes. Recovery about 1 1/2 to 2 hours. He will shave, yes shave, part of my head. Make an incision and take some of the lump for testing. He also mentioned that Myeloma patients have a tendency to bleed a lot so there are times it is better to remove the whole thing verses just a piece. Will make that decision at the time of the surgery. Mentioned the skin on the skull is very thick. I will be under anesthesia (if not, I would be asking for some anxiety drugs). This will be preformed as an out patient and very rarely does anyone have to stay overnight. You all know me and how I am so I will pack a small overnight bag just in case. LOL!!!
He left and his nurse discussed a few other things with us. She left and the surgery scheduler came in and discussed a few other things. We have to go to an 1 1/2 hour preop session a few days before surgery. This will be to talk to the anesthesiologist and review the do's and don'ts. She is trying to get the surgery scheduled for next week and I should know by tomorrow the date. Insurance company has to be notified first and foremost. Then she walked us out to check out desk, then to the elevator. So nice. I had to chuckle because this is the check out desk and elevator we have used for almost a year now. Again, so nice of her.
That's all I know for now but once I hear from the scheduler, I will let everyone know the date. Once again, I appreciate everyone's concern for me. It is wonderful to have the support group that I have with all of you and everyone that you have added. The prayers are still welcomed and appreciated. The positive energy is still welcomed and appreciated. The thoughts are still welcomed and appreciated. All of you are appreciated!!!
Well, our first born grandchild, Jakob, graduates this Friday night. So unbelievable to me. No way, can't be, say it isn't so. Dr. Sarriera gave me the okay to fly out for this wonderful occasion. One that I was so afraid that I wouldn't be able to attend. Would have broken my heart for sure. BUT I will be able to see Jakob's graduation. Will be a short trip but I will be able to see Jake graduate. And did I mention that I will be able to see Jakob graduate!!!! Jakob called me today, "Didi, can you believe this is my last day of high school? Wow. Happy but sad Didi. And excuse my French but HOLY SHIT"! Made me laugh. Wasn't sure what French he was going to use. I have heard a lot worse. ;)
Quote:
Love and laughter are two of the most important cancer treatments in the world. Overdose of both of them!
We arrived around 1:15 for my 1:30 appointment with Dr. Nair, oncology surgeon. They were pretty much on time calling me back. Very anxious couple of days for Bill and I waiting for this appointment even though it was only a consultation. Dr. Nair talk with me regarding the lump and then examined it. He said that Dr. Sarriera sent him a note and also had a brief conversation with him. Said Dr. Sarriera was very concerned and wanted a biopsy done on the lump. We then told him that my labs were excellent with M spike being 0 (this is wonderful for a Myeloma patient), all my light chains within normal range, my IGE near being in range etc. etc. He reread the notes again that Dr. Sarriera sent him and told us he would be right back. Was going to discussed it once again with Dr. Sarriera. He came back in and said that Dr. Sarriera really wanted this biopsy done so we needed to have the surgery schedule. Dr. Nair discussed the procedure with me saying that it would take about 30 to 40 minutes. Recovery about 1 1/2 to 2 hours. He will shave, yes shave, part of my head. Make an incision and take some of the lump for testing. He also mentioned that Myeloma patients have a tendency to bleed a lot so there are times it is better to remove the whole thing verses just a piece. Will make that decision at the time of the surgery. Mentioned the skin on the skull is very thick. I will be under anesthesia (if not, I would be asking for some anxiety drugs). This will be preformed as an out patient and very rarely does anyone have to stay overnight. You all know me and how I am so I will pack a small overnight bag just in case. LOL!!!
He left and his nurse discussed a few other things with us. She left and the surgery scheduler came in and discussed a few other things. We have to go to an 1 1/2 hour preop session a few days before surgery. This will be to talk to the anesthesiologist and review the do's and don'ts. She is trying to get the surgery scheduled for next week and I should know by tomorrow the date. Insurance company has to be notified first and foremost. Then she walked us out to check out desk, then to the elevator. So nice. I had to chuckle because this is the check out desk and elevator we have used for almost a year now. Again, so nice of her.
That's all I know for now but once I hear from the scheduler, I will let everyone know the date. Once again, I appreciate everyone's concern for me. It is wonderful to have the support group that I have with all of you and everyone that you have added. The prayers are still welcomed and appreciated. The positive energy is still welcomed and appreciated. The thoughts are still welcomed and appreciated. All of you are appreciated!!!
Well, our first born grandchild, Jakob, graduates this Friday night. So unbelievable to me. No way, can't be, say it isn't so. Dr. Sarriera gave me the okay to fly out for this wonderful occasion. One that I was so afraid that I wouldn't be able to attend. Would have broken my heart for sure. BUT I will be able to see Jakob's graduation. Will be a short trip but I will be able to see Jake graduate. And did I mention that I will be able to see Jakob graduate!!!! Jakob called me today, "Didi, can you believe this is my last day of high school? Wow. Happy but sad Didi. And excuse my French but HOLY SHIT"! Made me laugh. Wasn't sure what French he was going to use. I have heard a lot worse. ;)
Quote:
Love and laughter are two of the most important cancer treatments in the world. Overdose of both of them!
Sunday, May 14, 2017
They Let Anyone Shop Here.
Had my doctor's appointment on Friday, May 12th. Labs drawn and then a 45 minute wait to see
Dr. Sarriera and Abby. Kathy, the lab tech that draws my blood, and I are on first name basis. It's wonderful being recognized by so many of the persons that work in the Cancer Center. Not a place anyone wants to be but when you have so many friendly people there, it sure does make it easier. Abby usually comes in the exam room and talks with us first. I discuss with her what I have questions about and she in turn, reviews them with Dr. Sarriera before he comes to exam me. Had several things to discuss with Dr. Sarriera. First and foremost was my constant rash from the Revlimid. He decided that I will no longer take the Revlimid. I asked what we would do for a maintenance plan. At this time nothing. He will monitor my Myeloma with my blood draws. Next was how long do I have to be on Acyclover (meds used to prevent Shingles)? As long as I am not having any side effects, he would like me to continue. Will discuss again in a few months. Immunizations was the next issue. I am due for 5 more "baby" shots this month. I will be getting them at my next appointment on June 2nd. Also, we discussed me going to a physical therapist for my left arm. X-rays showed nothing.
My next discussion was regarding a lump I found on my head just below what I call my crater.
Dr. Sarriera was quite concerned about this lump. Needs to biopsied. Explained just because my lab numbers are good and the Myeloma is not measurable, this does not mean there isn't any cancer. There is always cancer there when you have Myeloma. His concern alarmed Bill and I once again. Appointment was made with Dr. Nair, the oncology surgeon for a consolation Tuesday, May 16th. I had seen Dr. Nair last year when I first was diagnosed. He had examined my lump (not a crater then). Dr. Sarriera and Abby then left Bill and I. We just looked at each other and of course, my tears started. Not like I wanted to cry but I once again felt the "fear" I felt last July when I heard the word cancer. Felt the fear of, once again, the unknown of what is on my head. Felt the fear of what may happen. Then the door opened and in walked Desiree, belly and all. She wanted to share her latest sonogram with us. She wanted to tell us that she is having a girl and a boy. Seeing Desiree's happy smile, sonogram picture of her babies and her large belly (ha!) helped me smile and chase some of that fear away. Desiree just seems to be there at the right times. Yes, I have a lot of fear still but I am trying to push the negatives out and let the positives in. Easier said then done.
Because of the concern of this lump, we didn't get a chance to discuss my lab results. From what Bill and I can see on my health portal, they are all in good ranges. Still a few of the Myeloma lab results to come in.
Today I stopped at Publix to get a card and plant for mom for Mother's Day. I heard someone saying "They let anyone shop here". I didn't look up to see who was saying it because we don't recognize anyone when we are out and about. We don't know a lot of people. Then I hear "YooHoo". So I had to look up and it's a guy we met through Michelle and Gery. First time ever since we moved to FL. I felt like a real residence of FL. ;)
Quote:
No matter how many times I break down, there's a little piece of me that says "NO, you're not done yet. Get BACK UP!"
Had my doctor's appointment on Friday, May 12th. Labs drawn and then a 45 minute wait to see
Dr. Sarriera and Abby. Kathy, the lab tech that draws my blood, and I are on first name basis. It's wonderful being recognized by so many of the persons that work in the Cancer Center. Not a place anyone wants to be but when you have so many friendly people there, it sure does make it easier. Abby usually comes in the exam room and talks with us first. I discuss with her what I have questions about and she in turn, reviews them with Dr. Sarriera before he comes to exam me. Had several things to discuss with Dr. Sarriera. First and foremost was my constant rash from the Revlimid. He decided that I will no longer take the Revlimid. I asked what we would do for a maintenance plan. At this time nothing. He will monitor my Myeloma with my blood draws. Next was how long do I have to be on Acyclover (meds used to prevent Shingles)? As long as I am not having any side effects, he would like me to continue. Will discuss again in a few months. Immunizations was the next issue. I am due for 5 more "baby" shots this month. I will be getting them at my next appointment on June 2nd. Also, we discussed me going to a physical therapist for my left arm. X-rays showed nothing.
My next discussion was regarding a lump I found on my head just below what I call my crater.
Dr. Sarriera was quite concerned about this lump. Needs to biopsied. Explained just because my lab numbers are good and the Myeloma is not measurable, this does not mean there isn't any cancer. There is always cancer there when you have Myeloma. His concern alarmed Bill and I once again. Appointment was made with Dr. Nair, the oncology surgeon for a consolation Tuesday, May 16th. I had seen Dr. Nair last year when I first was diagnosed. He had examined my lump (not a crater then). Dr. Sarriera and Abby then left Bill and I. We just looked at each other and of course, my tears started. Not like I wanted to cry but I once again felt the "fear" I felt last July when I heard the word cancer. Felt the fear of, once again, the unknown of what is on my head. Felt the fear of what may happen. Then the door opened and in walked Desiree, belly and all. She wanted to share her latest sonogram with us. She wanted to tell us that she is having a girl and a boy. Seeing Desiree's happy smile, sonogram picture of her babies and her large belly (ha!) helped me smile and chase some of that fear away. Desiree just seems to be there at the right times. Yes, I have a lot of fear still but I am trying to push the negatives out and let the positives in. Easier said then done.
Because of the concern of this lump, we didn't get a chance to discuss my lab results. From what Bill and I can see on my health portal, they are all in good ranges. Still a few of the Myeloma lab results to come in.
Today I stopped at Publix to get a card and plant for mom for Mother's Day. I heard someone saying "They let anyone shop here". I didn't look up to see who was saying it because we don't recognize anyone when we are out and about. We don't know a lot of people. Then I hear "YooHoo". So I had to look up and it's a guy we met through Michelle and Gery. First time ever since we moved to FL. I felt like a real residence of FL. ;)
Quote:
No matter how many times I break down, there's a little piece of me that says "NO, you're not done yet. Get BACK UP!"
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