WaWa
Well its been awhile since I have blogged. A lot has happened during that time frame. I continued taking the Selinexnor off and on for several weeks. This drug made me nauseous, had no appetite, and in bed all day. No quality of life. Had to have fluid drip several times. Had a pharmacist, Cassie, assigned to my case. Had to have labs drawn and she decided if I was to take the Selinexor. She and Dr. Sarriera decreased the dosage from 160 mg to 100 mg. Still the same side effects. I couldn't stand the "no quality of life". Was taken off Selinexor. Pet scan February 6th. I have been chemo free since February 11th, my appointment with Dr. Sarriera. An appointment Bill and I knew we would be hearing what we didn't want to hear. There are no more drugs for me to take. This has us very scared. I am done with treatments. NO MORE DRUGS FOR ME. I have depleted them. Done. Can't repeat some of them because I progressed while on them. Had Myeloma labs drawn. My M-spike is still 0.
My Lambda Free Light Chain has increased to 35.4 - 0.5700-2.63 are the normal range markers. I am way above that. Last lab draw in December was 20.2. Really showed an increase in Feb to 35.4. Jan was 10.3. Lambda light chain keeps increasing. So the drugs I was on were not working.
We, through tears, asked Dr. Sarriera what was next if no drugs. Best thing would be a clinical trial. My problem is I do not have the markers they are looking for to be eligible for a trial. Dr. Sarriera is thinking since my Lambda light chain is increasing, this may qualify me for a trial if one could be found. So we are praying for a trial. He would reach out to Moffiit, in Tampa, to set me up with an appointment with a Myeloma specialist. This has been done and I have an appointment on the 23rd of March. When Moffitt called to set up an appointment, they had not received my medical records of yet. I was told once they received my records, they could see if they could get me in sooner. Also, Dr. Sarriera wants me to see a pain management doctor. May not need it so much now but may need later. That appointment is set for March 5th. Sarriera prescribe a pill to take for the tenderness around the head lesions. I need to go to the cancer center to pick it up.
Another suggestion was for me to go in the hospital and they would give me a high dose of chemo. This chemo treatment is like the one I had during my transplant. Be very, sick, lose my hair are some of the side effects. This, Dr. Sarriera, says may cause me not to be able to qualify for a trial. So that is on hold for now. We are hoping and praying the appointment on the 23rd sheds a new light on our situation.
Also, on top of all this, I got a sinus infection. Was doctoring between Dr. Sarriera and my family doctor. Chest X-ray (lungs clear), antibiotics, breathing treatment, a $100 inhaler but I finally think I kicked it.
So right now I am very scared. Scared because I am not on a treatment plan. Scared because I have several lumps on my head. Scared because around some of these lesions/lumps, it is very tender to the touch. Scared because I can feel drawing and pulling around these lumps. Scared because my pet scan showed new tumors in my legs on my tibia. Scared because I am just scared.
Bill and I finally went to a WaWa, first time ever. Stopped for gas. It reminded me of Sheetz even though I didn't go inside.
Quote:
Go ahead and scream, go ahead and cry but never give up. Cancer sucks!
Tuesday, February 25, 2020
Monday, January 6, 2020
Big
Probably a long one.
First we have really been blessed with this beautiful dog. I know some of you aren't dog persons, not sure how you can't be. But that's okay. We named her Leeta. Sasha was my name helper. Her name at the foster's house was Lolita. We took her on a 7 day trial November 8th and still have her. Leeta has ben great for Bill even waking him up some days at 6. They walk each morning. Been cold here. Cold for us in the AM. Bill said he is going to look for some gloves. Holding the leash attached to her is cold. Again, what a joy even though Bill's singing to her can be annoying at times. He used to sing to Tommy too.
Deb, my sister Deb. There are days I miss her loving, caring ways with me. Not to help shower, (we have stories of that :0 ), not to help me with my left arm dangling (no longer does), not to help me with walking(I may walk funny but I can walk), not to help me get to the bath room (no problems there), to sleep on a lounge chair for days, not to help me dress(got that down). But patiently sat with me when I tired to remember passwords, fixed my hair, and let me complain and bite her tongue, remembered my therapy exercises for me. Just those little things that are really big things to us. Just miss her at times. So glad I had Bill to pick up where she left off. He, of course, is my main rock. Always there for a suggestion, to encourage me through something, listen to my thoughts and love me through all the hoopla we are going through right now.
I started my new plan on December 30th. So was able to enjoy New Years Eve as didn't have any side effects yet. Some of you mention that it looked like I was having a good time and this is why. Side effects started on the 1st of January.
I am to take 8 mg of Dex on day1 when I take my Selinexinor. That is 80 mg. This was started December 30. Jan 1st dose number 2. Several days of fatigue causing me to be in bed most of the day. Waves of nausea when I was up. Dr. Sarriera prescribed Zofran for that. This comes with its own set of side effects. I have also been taking Digize oil for the nausea. And putting ginger oil in my tea. I do exercises as I can. Walk around pool or around my house going from kitchen, hallway, living room, dining room, back to kitchen. Not a lot but if I can do it, I do it. Jamie would be proud of my 25 laps. At one time, one lap in the house was a struggle. Trying to eat 5 or 6 small meals a day instead of large ones.
Week 2
January 6th. Had a decent day today. Haven't taken anything since last Wednesday. Struggled through Thursday and the weekend with the nausea and fatigue. I even missed Ellie's birthday dinner. :(
Took my Dex at 11
Selinexnor at 4.
Dex it working like it used to. Not tired yet. Making me bitchy too. Look out. Wait, there is no one here to lash out to. Bill is in bed. Leeta sound to sleep on the couch in the family room. Neighbors all in bed too. WAKE UP Michelle. Need to vent. Just kidding. Okay stopping this.
Soon my sister, Matt, Connie and Madeleine will be here. As well as my brother, Leslie, Marcy and Aubrey. So excited. Also will be seeing Mark and Irene. Mitzi and Greg too. Sandy and Denny are flying down for several weeks also. All for Ellie's Bat Mitzvah. Did I say how excited I am? Hoping by then I have whipped some of these side effects.
My next appointment with Dr. Sarriera is January 15th. Will do CBC and CMP labs one hour before.
When we went for a visit to see Lolita we learned at time she had been dropped off at a shelter. Don't know why. Poodle and Pooch rescued her. She immediately made up to Bill. Oh, he had treats in his pocket. Anyway, when she was dropped off, her name was Big Sexy. What?
Quote:
Since diagnosed with cancer, every day is a bonus.
Probably a long one.
First we have really been blessed with this beautiful dog. I know some of you aren't dog persons, not sure how you can't be. But that's okay. We named her Leeta. Sasha was my name helper. Her name at the foster's house was Lolita. We took her on a 7 day trial November 8th and still have her. Leeta has ben great for Bill even waking him up some days at 6. They walk each morning. Been cold here. Cold for us in the AM. Bill said he is going to look for some gloves. Holding the leash attached to her is cold. Again, what a joy even though Bill's singing to her can be annoying at times. He used to sing to Tommy too.
Deb, my sister Deb. There are days I miss her loving, caring ways with me. Not to help shower, (we have stories of that :0 ), not to help me with my left arm dangling (no longer does), not to help me with walking(I may walk funny but I can walk), not to help me get to the bath room (no problems there), to sleep on a lounge chair for days, not to help me dress(got that down). But patiently sat with me when I tired to remember passwords, fixed my hair, and let me complain and bite her tongue, remembered my therapy exercises for me. Just those little things that are really big things to us. Just miss her at times. So glad I had Bill to pick up where she left off. He, of course, is my main rock. Always there for a suggestion, to encourage me through something, listen to my thoughts and love me through all the hoopla we are going through right now.
I started my new plan on December 30th. So was able to enjoy New Years Eve as didn't have any side effects yet. Some of you mention that it looked like I was having a good time and this is why. Side effects started on the 1st of January.
I am to take 8 mg of Dex on day1 when I take my Selinexinor. That is 80 mg. This was started December 30. Jan 1st dose number 2. Several days of fatigue causing me to be in bed most of the day. Waves of nausea when I was up. Dr. Sarriera prescribed Zofran for that. This comes with its own set of side effects. I have also been taking Digize oil for the nausea. And putting ginger oil in my tea. I do exercises as I can. Walk around pool or around my house going from kitchen, hallway, living room, dining room, back to kitchen. Not a lot but if I can do it, I do it. Jamie would be proud of my 25 laps. At one time, one lap in the house was a struggle. Trying to eat 5 or 6 small meals a day instead of large ones.
Week 2
January 6th. Had a decent day today. Haven't taken anything since last Wednesday. Struggled through Thursday and the weekend with the nausea and fatigue. I even missed Ellie's birthday dinner. :(
Took my Dex at 11
Selinexnor at 4.
Dex it working like it used to. Not tired yet. Making me bitchy too. Look out. Wait, there is no one here to lash out to. Bill is in bed. Leeta sound to sleep on the couch in the family room. Neighbors all in bed too. WAKE UP Michelle. Need to vent. Just kidding. Okay stopping this.
Soon my sister, Matt, Connie and Madeleine will be here. As well as my brother, Leslie, Marcy and Aubrey. So excited. Also will be seeing Mark and Irene. Mitzi and Greg too. Sandy and Denny are flying down for several weeks also. All for Ellie's Bat Mitzvah. Did I say how excited I am? Hoping by then I have whipped some of these side effects.
My next appointment with Dr. Sarriera is January 15th. Will do CBC and CMP labs one hour before.
When we went for a visit to see Lolita we learned at time she had been dropped off at a shelter. Don't know why. Poodle and Pooch rescued her. She immediately made up to Bill. Oh, he had treats in his pocket. Anyway, when she was dropped off, her name was Big Sexy. What?
Quote:
Since diagnosed with cancer, every day is a bonus.
Sunday, December 22, 2019
Australia
So the labs are back. Not good. I received a call from Dr. Sarriera on Thursday. Left message to call him back. We knew if he called, that wasn't good. Finally we were able to connect. He started by saying the labs were back and the light chains are not good. They are getting higher. October they were 2.03, November 10.3 and December 20.2 He said he didn't want me to be with out some sort of treatment seeing this.
I will be taking a chemo pill called Selinexor (Xpovio) on day 1 and 3 along with Dex each week. No week off. So day 1 could be Monday and day 3 would be Wednesday or day 1 Tuesday and day 3 would be Thursday. I will be taking 80 mg of the Selinexor and 10 mg of the Dex on each of those days. . Not sure when I will be starting as we are waiting on my insurance company to approve.
This pill has been FDA approved in July of this year (2019). There were several clinical trials prior to the approval. So a fairly new drug for Myeloma patients who have relapsed after several treatment plans not working. That would be me.
As with most drugs, there are side effects. Deficiency of platelets, neutropenia, nausea, GI problems, fatigue, infections etc, etc. We will just have to see what, if any, will be my side effects. Of course, we know the Dex will cause a mild rash, not letting me sleep, making me sleep, crying for no reason. And I will be taking this twice a week instead of once. Poor Bill.
Again, none of this will be started until I get the prescription of the Selinexor. The pharmacy at the Cancer Center has been wonderful. They have mailed my last few prescriptions directly to me since we weren't coming in to the Cancer Center. They will call me once this one is ready.
I know you all are saying to me, this is the one that's going to work. I appreciate it but sometimes, I would rather not hear that. But say it as you want because I hope and pray you are all right.
I ask Kristi for a few suggestions for the girls for Christmas. She gave me one for Ellie for a sweatshirt. I ordered it right away because of the possibility it may sell out. Didn't really pay attention to where it would be shipped from just when it would be shipped. Got an email saying it was being processed for shipping. Then read it would be shipping from Australia. Oh. It's not going to not be here for Christmas. :) Will print a picture of a kangaroo and put in a box and wrap it.
Heard from our friends Joanie and Harry. Harry has been in the hospital (John Hopkins) for 11 days. Not sure what is wrong. Started out as shingles. Has been through a lot the last 11 days. Please say few prayers for him and for Joanie as the care giver.
Quote:
Cancer doesn't define you; strength and courage does.
So the labs are back. Not good. I received a call from Dr. Sarriera on Thursday. Left message to call him back. We knew if he called, that wasn't good. Finally we were able to connect. He started by saying the labs were back and the light chains are not good. They are getting higher. October they were 2.03, November 10.3 and December 20.2 He said he didn't want me to be with out some sort of treatment seeing this.
I will be taking a chemo pill called Selinexor (Xpovio) on day 1 and 3 along with Dex each week. No week off. So day 1 could be Monday and day 3 would be Wednesday or day 1 Tuesday and day 3 would be Thursday. I will be taking 80 mg of the Selinexor and 10 mg of the Dex on each of those days. . Not sure when I will be starting as we are waiting on my insurance company to approve.
This pill has been FDA approved in July of this year (2019). There were several clinical trials prior to the approval. So a fairly new drug for Myeloma patients who have relapsed after several treatment plans not working. That would be me.
As with most drugs, there are side effects. Deficiency of platelets, neutropenia, nausea, GI problems, fatigue, infections etc, etc. We will just have to see what, if any, will be my side effects. Of course, we know the Dex will cause a mild rash, not letting me sleep, making me sleep, crying for no reason. And I will be taking this twice a week instead of once. Poor Bill.
Again, none of this will be started until I get the prescription of the Selinexor. The pharmacy at the Cancer Center has been wonderful. They have mailed my last few prescriptions directly to me since we weren't coming in to the Cancer Center. They will call me once this one is ready.
I know you all are saying to me, this is the one that's going to work. I appreciate it but sometimes, I would rather not hear that. But say it as you want because I hope and pray you are all right.
I ask Kristi for a few suggestions for the girls for Christmas. She gave me one for Ellie for a sweatshirt. I ordered it right away because of the possibility it may sell out. Didn't really pay attention to where it would be shipped from just when it would be shipped. Got an email saying it was being processed for shipping. Then read it would be shipping from Australia. Oh. It's not going to not be here for Christmas. :) Will print a picture of a kangaroo and put in a box and wrap it.
Heard from our friends Joanie and Harry. Harry has been in the hospital (John Hopkins) for 11 days. Not sure what is wrong. Started out as shingles. Has been through a lot the last 11 days. Please say few prayers for him and for Joanie as the care giver.
Quote:
Cancer doesn't define you; strength and courage does.
Tuesday, December 17, 2019
No
Today was my appointment with Dr. Sarriera. As I had mentioned in the last post, I stopped taking the Thalidomide. The fatigue, the foggy head, the increased neuropathy, the no energy, the tears was not the way I wanted to be each day. It took a few days but I was finally able to be a little like myself. Never will be my old self but I could at least function. Was able to get in my sewing room, wrap gifts, help get the tree up (Sasha and Ellie help decorate the tree), do some decorations in my house. Nothing like I used to but it looks a bit like Christmas. Do like our new tree. We were even able to have Michelle and Gery over for dinner and dimes. I still have the fatigue (chemo and cancer keeps that around for a long time) but nothing like I felt when on the Thalidomide.
Dr. Sarriera came in to the room and started by asking how I was feeling. Told him a lot better since I am not taking the Thalidomide. He did a quick exam and we talked. He said maybe we decrease the dosage of the Thalidomide to 50 to see how that would work with the side effects. I and Bill agrees, this family of drugs hasn't ever worked for me. Revlimid and Pomalyst are part of that family and we know the reactions from them. So Dr. Sarriera said he wanted to see how the numbers are when the labs come back. Had labs drawn for Myeloma today. Then depending on how they look, he would order a PetScan to see if the Myeloma is still in my legs and if somewhere else. No chemo or Dex for now. By this time, I am in tears. Tears of I have had enough. Tears of where do we go from here. We discussed the option of going back on Darzalax and Kyprolis. Bill and I remember this treatment was the one that worked the best for me out of all the various treatments I have had over the last almost 4 years but stopped working once I went from every other week to once a month. Is this the way to go?? Maybe, just maybe, this may work again even if its only for several months to help prolong my life. Once the PetScan is done and results back, there is a possibility of some radiation. This would depend on how many lesions are showing and where, if any. Since radiation is usually localized, this could be hard to do. Is this the way to go?? Again, have to wait on the PetScan results. We could go with a high dosage of chemo. One that I would be in the hospital for several days. This would be like the high dosage of chemo I had when I had my transplant. Would knock all my blood counts down, nausea, skitters, lose my hair, no energy. I remember it all from the transplant. Is this the way to go??? Is this going to prolong my life? Again, Dr. Sarriera wants to see the numbers from the labs. No follow up appointment necessary until, you guessed it, the labs are all back. Left the office in tears. Bill and I have been upset about all this all evening. Just will take one day at a time, one day at a time. That's all we can do.
And I have to tell you all that the bubble in Bill's eye has dissipated. Yeah. His site is still a bit distorted but the hole is still healing. And he is so happy that he no longer has to look through a million floaters.
With the holidays here, I remember things that our grandkids have done or said over the years. One that sticks in my mind especially when I am wrapping gifts is one of Kristopher. We were handing out the presents and he realized after a while, if it was a shirt box wrapped gift it was probably clothes. So if we handed him a shirt box wrapped gift, he would hand it back and say "No"!!
Quote:
No matter what the weather is during your cancer journey, always bring your own sunshine.
Today was my appointment with Dr. Sarriera. As I had mentioned in the last post, I stopped taking the Thalidomide. The fatigue, the foggy head, the increased neuropathy, the no energy, the tears was not the way I wanted to be each day. It took a few days but I was finally able to be a little like myself. Never will be my old self but I could at least function. Was able to get in my sewing room, wrap gifts, help get the tree up (Sasha and Ellie help decorate the tree), do some decorations in my house. Nothing like I used to but it looks a bit like Christmas. Do like our new tree. We were even able to have Michelle and Gery over for dinner and dimes. I still have the fatigue (chemo and cancer keeps that around for a long time) but nothing like I felt when on the Thalidomide.
Dr. Sarriera came in to the room and started by asking how I was feeling. Told him a lot better since I am not taking the Thalidomide. He did a quick exam and we talked. He said maybe we decrease the dosage of the Thalidomide to 50 to see how that would work with the side effects. I and Bill agrees, this family of drugs hasn't ever worked for me. Revlimid and Pomalyst are part of that family and we know the reactions from them. So Dr. Sarriera said he wanted to see how the numbers are when the labs come back. Had labs drawn for Myeloma today. Then depending on how they look, he would order a PetScan to see if the Myeloma is still in my legs and if somewhere else. No chemo or Dex for now. By this time, I am in tears. Tears of I have had enough. Tears of where do we go from here. We discussed the option of going back on Darzalax and Kyprolis. Bill and I remember this treatment was the one that worked the best for me out of all the various treatments I have had over the last almost 4 years but stopped working once I went from every other week to once a month. Is this the way to go?? Maybe, just maybe, this may work again even if its only for several months to help prolong my life. Once the PetScan is done and results back, there is a possibility of some radiation. This would depend on how many lesions are showing and where, if any. Since radiation is usually localized, this could be hard to do. Is this the way to go?? Again, have to wait on the PetScan results. We could go with a high dosage of chemo. One that I would be in the hospital for several days. This would be like the high dosage of chemo I had when I had my transplant. Would knock all my blood counts down, nausea, skitters, lose my hair, no energy. I remember it all from the transplant. Is this the way to go??? Is this going to prolong my life? Again, Dr. Sarriera wants to see the numbers from the labs. No follow up appointment necessary until, you guessed it, the labs are all back. Left the office in tears. Bill and I have been upset about all this all evening. Just will take one day at a time, one day at a time. That's all we can do.
And I have to tell you all that the bubble in Bill's eye has dissipated. Yeah. His site is still a bit distorted but the hole is still healing. And he is so happy that he no longer has to look through a million floaters.
With the holidays here, I remember things that our grandkids have done or said over the years. One that sticks in my mind especially when I am wrapping gifts is one of Kristopher. We were handing out the presents and he realized after a while, if it was a shirt box wrapped gift it was probably clothes. So if we handed him a shirt box wrapped gift, he would hand it back and say "No"!!
Quote:
No matter what the weather is during your cancer journey, always bring your own sunshine.
Sunday, December 1, 2019
Home
Barbara, so full of life, happy, beautiful. Some of you already saw my post about Barbara. I met Barbara at my oncologist's office. Desiree had given her information about our Myeloma support group meetings and she wanted to meet me before the next meeting. We talked for a long time once introduced. This was at the end of May. She did make it to our meeting in June. Again, so upbeat and joked about not having any hair yet. Recently had a transplant. Barb and I IM'd each other off and on the rest of June and part of July. I was preparing for my brain surgery and she had been diagnosed with a mass on her brain. Very aggressive mass. I feel bad because I lost contact with her as my surgery kept me in the hospital for 26 days. Once out, I had physical therapy, occupational theory, learning to walk again, dress again, shower again, gain control of my left arm so it wasn't just hanging on and on. All this with the help of my sister Deb for several weeks. I have a few voice texts from Barb that I have played a few times. The smile in her voice makes me happy. Barbara has passed. So hard to believe. She was only diagnosed with Multiple Myeloma last September. And then this mass appeared. Will miss her.
I finally emailed Dr. Sarriera and told him I could not take the way the Thalidomide was making me feel. No energy, foggy head most of the day, tired, just wanted to sleep, neuropathy was getting worse. No quality of life. Just wasn't good. He gave me the option of decreasing the dosage or stop taking the Thalidomide. I stopped taking the pill on November 26th. We will discuss where to go from here during my next appointment with him on the 17th of December. I know stopping the pill has helped some. It was my decision. Just couldn't do it any more. Am to still take the Dex every Friday. Was this the right decision? Well, at this time I am saying yes. Needed some life back.
Then on November 27th, I broke out in hives. Around my hair line, above my eye brows and across the lower area of the back of my neck. Not itchy hives, thankful for that. I used some essential oils for several days. Seemed to help take the puffiness out of the areas where the hives are. And then I used some aloe once they started to feel itchy. This from an aloe plant that I have grown from a piece of Kerri's aloe plant. The aloe works well for the itchy. I sent an email to Ana, Dr. Sarriera's nurse, so should hear from her with in a day or so. Dr. Sarriera has Monday's off.
As most of you know my sister, Deb, flew down to help Bill and me while I recovered. Was so great to have the help. She made it possible to overcome many challenges. Nearing the time she was getting ready to go back home, Donnie told her to stay as long as she needed to. Just wanted her to be home by Thanksgiving to make him a Thanksgiving dinner. And she was.
Quote:
Hope for the fighters, peace for the survivors and prayers for the taken. Together we are stronger than cancer.
Barbara, so full of life, happy, beautiful. Some of you already saw my post about Barbara. I met Barbara at my oncologist's office. Desiree had given her information about our Myeloma support group meetings and she wanted to meet me before the next meeting. We talked for a long time once introduced. This was at the end of May. She did make it to our meeting in June. Again, so upbeat and joked about not having any hair yet. Recently had a transplant. Barb and I IM'd each other off and on the rest of June and part of July. I was preparing for my brain surgery and she had been diagnosed with a mass on her brain. Very aggressive mass. I feel bad because I lost contact with her as my surgery kept me in the hospital for 26 days. Once out, I had physical therapy, occupational theory, learning to walk again, dress again, shower again, gain control of my left arm so it wasn't just hanging on and on. All this with the help of my sister Deb for several weeks. I have a few voice texts from Barb that I have played a few times. The smile in her voice makes me happy. Barbara has passed. So hard to believe. She was only diagnosed with Multiple Myeloma last September. And then this mass appeared. Will miss her.
I finally emailed Dr. Sarriera and told him I could not take the way the Thalidomide was making me feel. No energy, foggy head most of the day, tired, just wanted to sleep, neuropathy was getting worse. No quality of life. Just wasn't good. He gave me the option of decreasing the dosage or stop taking the Thalidomide. I stopped taking the pill on November 26th. We will discuss where to go from here during my next appointment with him on the 17th of December. I know stopping the pill has helped some. It was my decision. Just couldn't do it any more. Am to still take the Dex every Friday. Was this the right decision? Well, at this time I am saying yes. Needed some life back.
Then on November 27th, I broke out in hives. Around my hair line, above my eye brows and across the lower area of the back of my neck. Not itchy hives, thankful for that. I used some essential oils for several days. Seemed to help take the puffiness out of the areas where the hives are. And then I used some aloe once they started to feel itchy. This from an aloe plant that I have grown from a piece of Kerri's aloe plant. The aloe works well for the itchy. I sent an email to Ana, Dr. Sarriera's nurse, so should hear from her with in a day or so. Dr. Sarriera has Monday's off.
As most of you know my sister, Deb, flew down to help Bill and me while I recovered. Was so great to have the help. She made it possible to overcome many challenges. Nearing the time she was getting ready to go back home, Donnie told her to stay as long as she needed to. Just wanted her to be home by Thanksgiving to make him a Thanksgiving dinner. And she was.
Quote:
Hope for the fighters, peace for the survivors and prayers for the taken. Together we are stronger than cancer.
Tuesday, November 19, 2019
Cookies
I have been thinking about where I was 2 1/2 months ago. I was in a wheel chair most of the time, couldn't get a full shower alone, couldn't dress myself, couldn't make dinner, couldn't go to the bathroom without someone helping me, couldn't walk without assistance, couldn't lift my left arm, couldn't use my left hand, couldn't use this Mac as I couldn't type, couldn't sleep in my bed only in the recliner that was about 3 feet from where my sister, Deb was sleeping, couldn't do the laundry, couldn't sew, couldn't drive, couldn't use my iPad and phone correctly. Couldn't, couldn't do much. Dependent on others to help me with just about everything. Not fun but with that help, I am where I am today. No wheel chair, shower on my own, able to dress myself, make dinner, walk without a cane, lift my left arm, use my left hand, sleep in my bed, use my iPad and phone, on and on. A lot of the help came from my sister, Deb and Bill encouraging me, the physical therapist, Jeremy, and Kate, my occupational therapist. Kristi and Kerri encouraging me. A lot of texts, cards, phone calls from so many of you encouraging me. Michelle, Gery and Sharon sitting with me so Bill could go to the grocery store etc. Sandy and Denny making us dinners, sitting with me also. My sister Cheri flying in for a week to see for herself that I was okay. Today, with all this help, I feel I have made pretty much a full recovery from my brain surgery. A surgery that was to have me in the hospital for 3 to 5 days but ended up being there for 26 days. Several of those that I have no memory of. Just what Bill, Kristi and Kerri tell me about. Some of it funny. Like singing "Oh Holy Night" to Sasha, looking for Jakob, seeing Ana and Ellie playing a game, telling Bill and Kristi to shut up so I could sleep, repeating the same word over and over and a lot more. Some not so funny. Like pulling out my feeding tube, pulling out my IV's, relying on the nurses to move me around in the bed. Some I don't want to remember. But today because of all these could nots and all of these cans, I am where I am. Able to function normally. What I call normal. Bill may have comments on that. :).
Had a follow up appointment with Dr. Sarriera today, November 19th. I am now taking Thalidomide every day with no week off. Not too sure I am happy about that. This chemo pill makes me so fatigued every day. No energy. So hard to get moving. Dr. Sarriera says more exercise. I also will be taking Dex once a week. I have a mild rash which we are sure is coming from the Thalidomide. I have always got a light rash from the Dex but that would disappear in a day or so. This rash doesn't seem to want to disappear. It doesn't itch. Will watch to make sure it doesn't get worse. Also had labs drawn for CMP, CBC and Myeloma. Those results will be coming in to my portal day by day. The Myeloma results take longer. In fact, the one result takes almost a week. I go back to see Dr. Sarriera December 17th. Meanwhile, he and his staff will be watching the lab results.
Wish I could post pictures here so you could see, for those who haven't seen her, our new addition. Leeta. She's a 5 year old basset/terrier mixed rescue that we adopted about 1 1/2 weeks ago thanks to Kristi and Poodle and Pooch. Such a sweetheart. She's a keeper.
When Deb was here, we decided to make cookies. She would give me one when I accomplished something we had been working on. One day I got my slacks on myself. I was talking to mom on the phone using my right hand and Deb handed me a piece of a cookie in my left hand. I tried to get the cookie up to my mouth. Now remember I didn't have much control of that hand. Not happening. All Deb could do was laugh. Hand trying to get the cookie up to my mouth, head moving, mouth open. Not happening. Finally said goodbye to mom and put the cookie in my right hand and ate it. Sorry, no video. Thanks for that laugh and many more while you were here Deb.
Quote:
Life is a precious gift. We realize this when we are fighting cancer to stay alive.
I have been thinking about where I was 2 1/2 months ago. I was in a wheel chair most of the time, couldn't get a full shower alone, couldn't dress myself, couldn't make dinner, couldn't go to the bathroom without someone helping me, couldn't walk without assistance, couldn't lift my left arm, couldn't use my left hand, couldn't use this Mac as I couldn't type, couldn't sleep in my bed only in the recliner that was about 3 feet from where my sister, Deb was sleeping, couldn't do the laundry, couldn't sew, couldn't drive, couldn't use my iPad and phone correctly. Couldn't, couldn't do much. Dependent on others to help me with just about everything. Not fun but with that help, I am where I am today. No wheel chair, shower on my own, able to dress myself, make dinner, walk without a cane, lift my left arm, use my left hand, sleep in my bed, use my iPad and phone, on and on. A lot of the help came from my sister, Deb and Bill encouraging me, the physical therapist, Jeremy, and Kate, my occupational therapist. Kristi and Kerri encouraging me. A lot of texts, cards, phone calls from so many of you encouraging me. Michelle, Gery and Sharon sitting with me so Bill could go to the grocery store etc. Sandy and Denny making us dinners, sitting with me also. My sister Cheri flying in for a week to see for herself that I was okay. Today, with all this help, I feel I have made pretty much a full recovery from my brain surgery. A surgery that was to have me in the hospital for 3 to 5 days but ended up being there for 26 days. Several of those that I have no memory of. Just what Bill, Kristi and Kerri tell me about. Some of it funny. Like singing "Oh Holy Night" to Sasha, looking for Jakob, seeing Ana and Ellie playing a game, telling Bill and Kristi to shut up so I could sleep, repeating the same word over and over and a lot more. Some not so funny. Like pulling out my feeding tube, pulling out my IV's, relying on the nurses to move me around in the bed. Some I don't want to remember. But today because of all these could nots and all of these cans, I am where I am. Able to function normally. What I call normal. Bill may have comments on that. :).
Had a follow up appointment with Dr. Sarriera today, November 19th. I am now taking Thalidomide every day with no week off. Not too sure I am happy about that. This chemo pill makes me so fatigued every day. No energy. So hard to get moving. Dr. Sarriera says more exercise. I also will be taking Dex once a week. I have a mild rash which we are sure is coming from the Thalidomide. I have always got a light rash from the Dex but that would disappear in a day or so. This rash doesn't seem to want to disappear. It doesn't itch. Will watch to make sure it doesn't get worse. Also had labs drawn for CMP, CBC and Myeloma. Those results will be coming in to my portal day by day. The Myeloma results take longer. In fact, the one result takes almost a week. I go back to see Dr. Sarriera December 17th. Meanwhile, he and his staff will be watching the lab results.
Wish I could post pictures here so you could see, for those who haven't seen her, our new addition. Leeta. She's a 5 year old basset/terrier mixed rescue that we adopted about 1 1/2 weeks ago thanks to Kristi and Poodle and Pooch. Such a sweetheart. She's a keeper.
When Deb was here, we decided to make cookies. She would give me one when I accomplished something we had been working on. One day I got my slacks on myself. I was talking to mom on the phone using my right hand and Deb handed me a piece of a cookie in my left hand. I tried to get the cookie up to my mouth. Now remember I didn't have much control of that hand. Not happening. All Deb could do was laugh. Hand trying to get the cookie up to my mouth, head moving, mouth open. Not happening. Finally said goodbye to mom and put the cookie in my right hand and ate it. Sorry, no video. Thanks for that laugh and many more while you were here Deb.
Quote:
Life is a precious gift. We realize this when we are fighting cancer to stay alive.
Sunday, November 3, 2019
Nine
Day 10 of my Thalidomide and week 2 of the Dex. Just a few of the side effects. Rash from the Dex just like before. On my face mostly. Goes away. The worse problem is the tiredness. No energy. When I get up in the morning, I can't seem to get it together. Takes me most of the morning and a nap too start to feel okay. Then my day gets a little better. Some days it's an all day thing. Hate it. And this time change doesn't help. But I will continue taking the chemo pill hoping that it chases the Myeloma in my legs away. I have an appointment with Dr. Sarriera on Thursday, November 7th. Probably going to get hollared at for not starting the Thalidomide sooner. I had a good excuse. And I am behind on the blood work I think. Will get this all straighten out at my visit. Oh, the appointment is at 9 AM.
Bill is making good progress from his eye surgery. Bubble is dissipating more and more each day. Long process for him. But doing the best he can with one good eye.
Bill and I have been looking for a dog. Didn't want a puppy for sure. Kristi has been watching for us too. We decided to fill out an application to adopt with the rescue group Kristi works with, Poodle and Pooch. This way they have our app on file if a dog comes in we would be interested in. The person who receives the app called Bill and ask him how many dogs we had now. He said none. Well, on the app it said nine. Oops, slip of the finger. This person knows Kristi and she knew if we had nine dogs, Kristi would have told her.
Quote:
Being strong is the only choice I have while fighting this cancer. Cancer sucks.
Day 10 of my Thalidomide and week 2 of the Dex. Just a few of the side effects. Rash from the Dex just like before. On my face mostly. Goes away. The worse problem is the tiredness. No energy. When I get up in the morning, I can't seem to get it together. Takes me most of the morning and a nap too start to feel okay. Then my day gets a little better. Some days it's an all day thing. Hate it. And this time change doesn't help. But I will continue taking the chemo pill hoping that it chases the Myeloma in my legs away. I have an appointment with Dr. Sarriera on Thursday, November 7th. Probably going to get hollared at for not starting the Thalidomide sooner. I had a good excuse. And I am behind on the blood work I think. Will get this all straighten out at my visit. Oh, the appointment is at 9 AM.
Bill is making good progress from his eye surgery. Bubble is dissipating more and more each day. Long process for him. But doing the best he can with one good eye.
Bill and I have been looking for a dog. Didn't want a puppy for sure. Kristi has been watching for us too. We decided to fill out an application to adopt with the rescue group Kristi works with, Poodle and Pooch. This way they have our app on file if a dog comes in we would be interested in. The person who receives the app called Bill and ask him how many dogs we had now. He said none. Well, on the app it said nine. Oops, slip of the finger. This person knows Kristi and she knew if we had nine dogs, Kristi would have told her.
Quote:
Being strong is the only choice I have while fighting this cancer. Cancer sucks.
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