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Everything posted by simplyklb

  1. Garden Lady, I lost my dad to SCLC this past October. SCLC is a very aggressive form of cancer. My dad lived for five months after diagnosis. My dad had a lot of memory issues. He was on pain meds from the time he was diagnosed until he passed away. At one point, we got sooo concerned with his altered state that we requested a brain MRI be done. The result: No cancer in the brain. There could have been microscopic cells tho. Kristi
  2. We have a good rapport with the oncologist and the staff at the office. They are always watching out for us. Our oncologist's office is moving across town next June. I told Mom we are still going to the same oncologist if that means going across town We are not switching oncologists at this point. Kristi
  3. This thread really needs to be put at the top. There are lots of great advice in it. I don't know if it has been said.... Do as much research as you can as a caregiver... I did a lot in the beginning and and felt prepared. Caregiving can be overwhelming. Kristi
  4. I live with my parents. I found out when my mom walked into the bathroom where I was taking a bath. She sat on the toilet and told me that the CT scans had shown suspicious spots on her and my dad. She had just gotten a call from their internist with the results. It was Mon., April 28th. My life changed that day forever. Kristi
  5. Hi Lynn, First of all, not leaving your house for a month is NOT OK. I did that for a solid month and my friends saved me from that. I refuse to be a prisoner in my own home. My friends get me out at least once a week. I am finding myself wanting to get out of the house more and more. My mom treats my dad badly. My dad has some mental issues... Don't knows what is excerbating them at the moment and are going to do a brain MRI first and then go from there. I understand that Mom has her own thing going on but I am to my limit. I finally told her she needed an anti-anxiety pill to take the edge off. She agreed to it since my aunt was with me and takes anti-anxiety medications. She is going to try Lexapro and see how it works for her. Like people have replied, sometimes you have to make compromises for your own sake. You really need to talk to your hospice folks and get more services in your home. You need time for yourself. Kristi
  6. Hi Gail, I am so sorry to hear of Hank's passing. My thoughts and prayers are with you. Kristi
  7. Hi Denise, Sorry that Tom is having a bad time. Is Tom done with radiation? He may be having problems with the effects of the radiation especially if it hit his esophagus. I am glad that the oncologist is going to check him out. Kristi
  8. I am going away for a few days. It's not my problem while I am gone. I am not calling while I am gone. If someone needs something, they can call me. If it is an emergency, I can be back home in two hours. I need a break!!!!!!!!! Karen, I have told my mom what I want to focus on.... She has obviously not listened to me. I have tried to set boundaries and she said "Families do not set limits." I am burdened with a house that there is no way I can keep up with. Today I am tired because I have to share my bed with others. If people outside my family can recognize how overwhelmed I am... I think that my own family can even those who don't live here. I really hate the way my mom treats my dad. And I will be saying something to the social worker about it when she comes out tomorrow. I am tired of it. My family has fought me every step of the way. I am ready to throw it all in their laps for a few days. They get a taste of it while I am gone enjoying my well deserved break!! Kristi
  9. What has led us to now... Back in April, Dad said that he needed to go see the doctor. Mom was coughing and couldn't get rid of her cough. She made appts. for both of them to see the doctor on Thurs., April 10th. During the doctor's visit, Dad had a chest x-ray and a spot showed up on the x-ray. The doctor told Dad that he had pneumonia. We were puzzled because Dad had a pneumonia shot last fall. He went back to the doctor on Fri., April 18th. The doctor ordered another chest x-ray and then a CT scan on Dad. Dad went in for the CT scan on April 23rd. We did not get the results until Mon., April 28th. The CT scan revealed a tumor on the right lung along with a few enlarged lymph nodes. A spot on the liver along with an enlarged lymph node was noted as well as. An appt. was scheduled for May 9th with a pulmonary specialist. A CT scan of the abdomen was ordered. On Wed., April 30th, Dad underwent the abdominal CT scan. Dad's primary care physician called us and told us that Dad needed to get into the pulmonary specialist ASAP. On Thurs., May 1st, my oldest brother went to the pulmonary specialist with our parents. The news was not good. The pulmonary specialist ordered a bronchoscopy and a PET scan. The bronchoscopy was performed on Fri., May 2nd. My middle brother and I took Dad to the appt. After the biopsy, the doctor came out and talked to us. She told us that the tumor looked angry and that it was blocking his right bronchial tube. She said that she took several biopsies. Angry told me that the cancer was aggressive. At shortly after 5 PM on May 6, 2008, we received the results of the biopsy. Dad was diagnosed with small cell lung cancer. On Wed., May 7, 2008, Dad had his PET scan. We were at the outpatient center for 90 mins. We were also told that Dad would meet with the oncologist on Tues., May 13th at 9:30 AM. On Thurs., May 8, 2008, Dad was admitted to the hospital for pain management. His pain was unbearable. Dad's oncologist came to the hospital to meet us in the afternoon. The consult was ordered because the nurse told me at one point. At 12:30, the oncologist came in and spoke with my parents and I for the first time. We all three really like him. The oncologist was very upfront with us, which we really appreciated. We learned about the treatment plan and got the results of the PET scan. The PET scan pretty much revealed what we knew... There is spread to the liver (couple of spots) and the some of the bones. The prognosis is 1 to 2 years with treatment. Without treatment, it would be a month or two. We are not looking for a cure. There's a chance that the treatment will fail my dad. The oncologist said that he has only seen this in a handful of patients. The oncologist wants to do radiation first to help decrease my dad's pain. He is guessing 10 to 15 sessions. Chemo will start after radiation ends. I asked the oncologist about what chemo drugs would be used... He told me Carboplatin and VP-16. My dad finally had his MRI on Fri., May 9th. He had a 2 1/2-hour one of his brain and spine. One of the oncologists did a quick glance at the scan and said that it did not look like any mets to the brain. I am sure we will learn more later after the MRI is reviewed. After the MRI, my dad was taken to his first radiation session. He had his second radiation session this morning. As of Wed., May 14th... The results of the MRI did show a lesion on the skull. It has not gone thru the skull. Dad was released from the hospital on Mother's Day. My dad has had five radiation treatments so far. He has five more to go. On Mon., May 12th, my youngest brother and I met with one of the radiologist oncologists. The rad onc in charge of my dad's treatment was out of the office. The reason chemo has not started yet... They are radiating a large area. If chemo was to start now, the rad oncs would have to cut back on the amount of radiation that they can give Dad. We meet with Dad's oncologist tomorrow at noon. Dad has his sixth radiation treatment right before that. As of May 22nd...... Dad has finished radiation. He had his tenth and final radiation treatment on Wed., May 21st. Now on to chemo. Dad saw the oncologist on May 15th. The onc pretty much told us what he told us in the hospital. Dad will be getting chemo three times a week every three weeks. The first day the infustion will take 4 hours because Dad will be getting both the Carboplatin and VP-16. The other two days will take 2 hours since Dad will only be getting the VP-16 on those days. We set up a time to meet with the nurse practitioner for Wed., May 21st. My dad will be getting his port on Fri., May 23rd. We have to be at the hospital at 6:30 AM. His youngest sister will be in town and some of her kids so one of them will take dad and I to the hospital. My dad has been having a lot of effects from the radiation. It is difficult to get him to take certain meds that could help relieve some of his symptoms. We met with the nurse practitioner on Wed., May 21st. She checked Dad out.... He had low blood pressure. He has not been eating or drinking very well. She decided that he needed fluids right away. He got introduced to the infusion room at the onc's office. It's where he will have his chemo treatments. He had fluids for 2 1/2 hours. After the fluids were done, we went to his radiation appt. Dad got the treatment and we met with Marge, the nurse specialist, for one last time. Dad goes for follow up on June 27th. Today is a free day from appts. YAY! Next week is booked up with appts. for both mom and dad. Mom's been diagnosed with cancer.. They are not sure what the point of origin is with her cancer.. lung (CT scan caught it in April) or colon (spot lit up on her PET scan in that area). She met with the oncologist on Wed. and he feels it is lung cancer for now. Her colonoscopy on Wed., May 28th will tell the story. My family and I have run the gamut of emotions over the last couple of weeks. The whole experience has been overwhelming and draining to say the least. I am not angry at my parents for having cancer. I am angry at the crap care that they got from the primary care physician. They are both former smokers who quit years ago. Their PCP knew that was part of their histories. The PCP should have been on the look out for it. I am lucky that we have a great support system. We have lots of family and friends willing to help us. As of June 8th. Much has happened since I last updated. My dad got his port on Fri., May 23rd. It took a long time. The prep time beforehand took awhile. My dad was having chest pain so they had to do an EKG. The EKG was fine... It was heartburn.Then the procedure itself took awhile because my dad was dehydrated. His port is on the left side of his chest. Right after the port placement, dad had to go over to the oncologist's office for IV fluids. On Tues., May 27th, my dad started chemo. He was there for nearly four hours. He saw the nurse practitioner who referred him to the GI specialist for a scope of his esophagus. This was one appt. I didn't go to so Dad handed me his counts when he got home. The following morning Dad had to met with the nurse practitioner at the GI's office. A scope was scheduled for Wed., June 4th. It is believed that my dad is suffering from radiation burns. Then he had chemo that mornign and the following morning. On Tues., June 3rd, dad went in for a checkup with oncologist. His counts were OK. He had fluids. On Wed., June 4th, Dad had his scope. In the words of the GI doc, his esophagus is pretty ugly. There is 30 to 40 cm of esophagitis. He had a small ulcer in his stomach. Biopsies were taken of all inflamed areas. On Fri., Dad had blood draw, IV fluids, and a platelet infusion. I got a copy of Dad's blood counts. They were in the crapper. WBC was 0.1 and platelets were 5. Dad is prone to infection and bleeding due to his counts. Eating and drinking continue to be a big problem. Dad met with the nutritionist who tried to give him some suggestions. Dad goes back to the oncologist tomorrow. He will have blood draw, IV fluids, and platelets. As of June 18th On Monday, June 9th, Dad met with the oncologist. The onc checked him over real good. He got fluids. He did not need platelets because his platelets were at 48,000. His WBC was at 0.7. His counts were on the rise. On Fri., Dad met with the nurse practitioner. His counts were on the rise. His WBC was 1.5 and his platelets were 98,000. His pain meds were switched. Dad had to go off the morphine because it was causing way too many problems. He is now on Oxycodene and a Fentanyl patch. His hemoglobin was borderline so he got a unit of blood over at the hospital. It will be a few more days before the morphine is totally out of his system. He also got a red blood booster via injection. On Sat., June 14th, my dad was able to attend his oldest granddaughter's wedding. We were soo glad that he was able to go! There were times that we thought he was not going to be able to attend. On Sun., June 15th, the palliative care nurse came to do the intake interview. She spent two hours here. They are going to have a nurse come in twice a week to check Dad's pain and hydration.. Trying to save us some trips. We are going to have an OT eval done. My dd is not super steady on his feet. He has a shower bench that helps him greatly. On Monday, June 16th, Dad met with the nurse practitioner. His counts were much improved.. His WBC was 3.8 and his platelets were 292,000. Good enough to start his second round of chemo. There is still some talk of the stomach tube. On Tues., June 17th, Dad started his second round of chemo. He has done OK with the first two days. Dad did experience some shortness of breath and chest pains yesterday. They had to stop chemo for a bit to check him out. Everything came out OK. Dad is eating and drinking better. His esophagus is slowly healing. Fri., June 27, 2008 I have noticed improvement in my dad this week. It's about time. On Tues.,June 24th, Dad saw the oncologist. The oncologist upped his pain meds. Dad's Fentanyl patch is now 50 mcg instead of 25 mcg. (We are trying to lessen his dependence on oral meds.) My dad is sad and depressed about his cancer. The internist (whom I don't like) upped Dad's Prozac to 60 mg a day. His counts were low but he seemed to be holding his own. Today, Dad had a follow up with the radiologist oncologist. The rad onc feels that the tumor is shrinking because Dad is coughing and bringing up mucous. That was good to hear! She told him to try various food items to get his weight back up. The rad onc said that radiation followed by chemo is difficult to recover from. I don't think that any of us were prepared for how it impacted my dad. Dad goes back to see the rad onc in three months.
  10. My mom's journey started back in April 2008. She had a cough that she couldn't get rid of. She scheduled appts. for she and Dad on April 10th. The internist thought that she had a bronchial infection so he prescribed some medication. I think that it was Z-Pak. She and Dad were told to come back for follow up eight days later. She had a chest x-ray done then. The doctor didn't nnotice anything. However, the radiologist did. On Monday, April 21st, the internist called and said that she and Dad both needed CT scans. She and Dad went for their CT scans on Wed., April 23rd. On April 28th, the internist called with the results of both Mom and Dad's CT scans. He told her that there was a nodule on the left lung. My life was forever changed that day. On May 8th, my sister-in-law and I took Mom to her internist. I will never be impressed with the internist ever. He was like "Well you have decreased breathe sounds due to your years of smoking." I am sitting there thinking.. Uhh, you have been her doc for nearly 18 years and you are just now noticing this??? It was sending red flags to me. On Fri., May 9th, my sister-in-law and I took my mom to meet with the pulmonary specialist. The pulmonary specialist did some breathing tests. A chest x-ray was done. My mom did not want to see the actual CT scan. I did. The pulmonary specialist showed me the CT scan. I knew in my heart of hearts that it was cancer, especially when she showed me the enlarged lymph node. The brochoscopy and PET scan were scheduled that day for May 13th and May 14th. On Tues., May 13th, my sister-in-law and I took Mom for her brochoscopy. I will never forget when the pulmonary specialist came out and told us that Mom more than likely cancer. She said it was a different kind of lung cancer than my dad has. I seriously hate the fourth floor waiting room of the Peet Center because I have got nothing but bad news there. Anyway, my sister-in-law and I got on the elevator and hugged each other as we were riding down the elevator. I cried but managed to pull myself together before we got off. My dad was sitting out in the van waiting for us. We walked down the walkway and both said that our lives that we once knew were over. We went out and told my dad. Then we went back up to wait for Mom. She was pretty groggy and nauseated after the procedure. The next day she had her PET scan. That went OK. Late on Thurs., May 15th, the pulmonary specialist called with the results of both the biopsy and PET scan. It was definitely cancer... a non-small cell cancer. The PET scan also showed a light on the colon. On May 19th, my mom had to meet with the gastro NP to go discuss the colonoscopy. The colonoscopy was scheduled for Wed., May 28th. On Wed., May 21st, my mom met with the oncologist for the first time. He knew all of us already. He told us that mom definitely had cancer.. He felt it was lung cancer. But h wanted to make the final determination after her colonoscopy. We scheduled a follow up appt. for May 30th. I can't remember if it was at this appt. or the follow up appt. that I asked him two things: Had he ever had any couples in his practice with cancer at the same time and why he went into oncology. He said that he had six couples in his practice diagnosed with cancer at the same time and he liked oncology... getting to know his patients. On Wed., May 28th, my mom had her colonoscopy. The prep made her very sick. I thought that she was going to pass out on me the morning of her colonoscopy. Mom made it thru the colonoscopy OK. She did not have anything wrong.. no cancer, no polyps. She just had a hemmorhoid.. very minor. On Fri., May 30th, My sister-in-law and I took mom to the oncologist. He officially diagnosed her with lung cancer. The onc is going to scan Mom after the second round to determine if she needs four or six rounds of chemo. Chemo mixture of carboplatin, taxol, and avastin was scheduled to begin on Mon., June 16th. Mom wanted to wait until after my oldest niece's wedding. An appt. was scheduled for Fri., June 6th for Mom to meet with the nurse practitioner to go over the chemo regiment. On Wed., June 4th, Mom had her port placement. She had it done in Intervention Radiology. Mom had to be at the hospital at 7:30 AM and her procedure did not happen until after 9:30 AM. She was out by 11. The procedure was originally scheduled for the day my dad had his port placed. Her port placement was going to be done at another hospital. I was like no can do. Besides I wanted it done at the main hospital. I got my wish. It was done at the main hospital on another day. On Fri., my aunt (a breast cancer survivor) and I took Mom to meet with the nurse practitioner. The NP went over the chemo regiment. One day of treatment once every three weeks. My mom was prescribed steroids to take 12 and 6 hours before chemo. On Mon., June 16th, my mom went for her first chemo treatment with my aunt and her cousin (colon cancer survivor). So far so good. But I do notice that the chemo is starting to affect her like she gets cold easily. Mom has had minimal side effects this first round. She had joint pain that lasted a couple of days. She is starting to lose some of her hair. It shows that the chemo is working.)
  11. Hi All, I know that you all get tired of this. I had a bad day today. No two ways about it. I am having problems with my mother BIG TIME. Ever since she was diagnosed my mother does not want to deal with anything. My mother treats my dad very badly. Frankly, I am sick and tired of it. My dad is no angel but he does not deserve the treatment he gets from my mother. Today my mother and I had a blow up. I know... Not a good thing because I just threw my hands up and went downstairs and crawled in bed for three hours. The last thing I said to her while in tears.. You don't know how many nights I have cried myself to sleep. My mother is not getting the message. She told the OT that my dad was my stressor. Actually, it is my mother and my brothers who are the stressors, especially the ones who don't live here. Mother accused me of being in denial... I was like What?? Guys, she told me that I was in denial about being helpful to my dad in hopes that he got better. Fact is... I know my dad is going to die from his cancer. That is a fact. Then I told her that I was very scared about losing her to cancer. She was like you have to be more positive about it. I really enjoyed having my feelings invalidated. I know where my anger is coming from... My mother. She has set different standards for my brothers and I. More is expected of me. I resent it. I think that my mother wants me to take care of the house and her rather than my dad. I could care less about the house. No one helps me and she has not done anything to it for months. That was pretty evident when I dusted some stuff today. I do the laundry for four to seven people. It depends on what kids are here when. My philosophy is that if the stuff is not in the hamper, tough. I make a point to drag my clothes up from downstairs. The fact is he knew I was doing laundry last night and continued to mess around on the computer. My 46 year old brother can't drop his clothes in the hamper?? What the hell?? He can't keep his room clean. I am expected the vacuum it. If I don't do anything to my room, it just doesn't get done. I saw my dad cry for the first time tonight. It's only the second time I have ever witnessed it. My heart broke. I told my mother about it and she did not care. I wanted to tell her off. My mother is a very selfish individual and I know where her youngest son gets it. They both think of themselves. It took me 44 years to realize it. My two friends and I had a very long conversation on the phone... They told me that I need to leave for an unspecified time. We have a meeting with the social worker on Monday. If it were not for this group and cancerforums.net and closest friends, I would be going out of my mind. The cancer diagnoses have just excerbated the family issues. It's pretty sad when most of your family doesn't want to deal with it. Kristi...... feeling angry and sad and everything else
  12. Hi Denise, I have to have the palliative care nurse look at my dad tomorrow. His nose is really running. I am hoping some of that is the fact he is coughing more and bringing junk up thru his mouth and nose. Kristi
  13. My mom does not get it. She hates the advice that I get form online and from friends in real life. If it weren't for places like here and cancerforums.net and my friends and sister-in-law, I would have never known what to expect. I am overwhelmed because of my mom and brothers. My dad is a very difficult person to deal with even when he doesn't have cancer. My mom told me that I should not worry about being scared and try to be more positive. I try to be positive but it is hard when you are overwhelmed. BTW, I am not a drama queen (got accused of that in another forum). My best friend heard me cry on the phone for the first time in 20 years today. Kristi
  14. Hi Denise, Do not hesitate to contact the doctor's answering service if Tom has another coughing spell like that. Kristi
  15. Hi All, I have a problem and I need to know how to address it. Two of my brothers have kids. My brother who lives here has two kids, 13 and 9. My youngest brother has a daughter who is 12. The daughter does not stay at his house when it is my brother's weekend to have her. She stays here. If the kids are over here, I have to tend to their care in addition to my parents. They are not my kids! I love my nieces but they are not my kids. I tried to tell my mom it is too tiring to tend to the kids. She's like they are no problem. Who is running the household here???? I am tired of picking up after the kids. I tell them to clean up after themselves. I have to cook for them and manage all the other stuff. The 13 yr. old is super about helping me out. The 9 year old leaves messes for me. She's terrible about picking up after herself. The 12 year old has no concept of cleaning up... Her mother's a slob as is the other two kids' mom. I want the kids around so they can spend timer with their grandparents but I do not want the additional work for me. Kristi
  16. Hi Gail, Glad today is a good day. Lots of prayers for you and Hank! Kristi
  17. Dad's nurse will come out to check him on Friday afternoon. She wants to make sure he is OK for the weekend. I will find out on Friday when she comes out next week. I had lots of questions for the nurse today. I am not afraid to ask. Kristi
  18. Hi Denise, I am sorry that you are out of sick days. I am not working right now but that will change later this year when I have to go back to work. I can't afford to be off work forever. I would give it another day or so. If you are not an y better, go the ER. I am like you... I am better at advocating for others than myself. Thinking of you! Kristi
  19. Lillee, Congrats on your recent marriage! Glad that your dad was able to walk you down the aisle. My dad was able to attend his oldest granddaughter's wedding. We were all so glad that he was able to go. Kristi
  20. Hi Carole, I am going to ask when the nurse comes out today. Dad has an assigned weekday nurse. We met her for the first time this past Friday. She likes my folks' oncologist (and we do too). We had our intake done on Father's Day I know organizations can really vary. We can call anytime day or night. If it is something that can't be handled over the phone, a nurse will come out. Kristi
  21. Hi Denise, Insist on a chest x-ray. Let us know the apt. goes. Kristi
  22. My dad is on palliative care with Kansas City Hospice and Palliative Care. The oncologist office made the referral for us. The referral to KC Hospice and Palliative Care has been a Godsend! The nurse comes in twice a week to monitor dad. I will talk to her tomorrow to see if someone can check him over the weekend. My dad had an OT come in yesterday to assess his needs. We ordered a commode, walker, and transport wheelchair yesterday and it came this evening. The man who delivered it showed us how to adjust the equipment to meet Dad's needs. I plan on donating the equipment back to KC Hospice and Palliative Care after Dad is done using it. We meet with the social worker later this week. I utilize the volunteer service. It benefits my mom. My dad is not as receptive yet. I am hoping that he will warm up to the idea. It allows me to get out for an evening. I was talking with a cousin this evening. My uncle has cancer and is not getting any treatments for it. He was given less than a year. They are meeting with hospice tomorrow night. I told her that is something that they need to utilize. I will call her later in the week to see how the meeting went. Kristi
  23. I have registered to be an organ donor with the state that I live in. The reason I did it... My oldest brother needs a kidney transplant. I was not a match for him. I will have it stated in my healthcare directive that I want my organs donated if they are suitable. Kristi
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