Hi everybody,
Its been along time since I have posted here. I hope you all are well and are sewing up a storm. I check in every now and then but alot has gone on since I last posted.
I haven't been in my sewing room since December . I started getting sick about every 10-13 days . Same time,same symptoms over and over. Always at night, hard chills,spiked temp, dry heaves this went on all night then in the morning temp would be gone and I would have a major sinus headache. Me being me would carry on as normal but it kept happening over and over ( I started tracking it on my phone)13 times between Dec. and Feb. Well after a "spell" one night I got up to go to work and when I got up to leave that afternoon my hips felt like hot pokers sticking in them to the point I didn't think I would make it to my car. I went and had labs drawn and told them to draw anything and everything they could think of because something wasn't right. Came back WBC LOW and my inflammation levels were 10 times what they should be. They referred me to an oncologist He first told me I had a viral syndrome??? (Because I didn't look sick). But wanted to draw labs "one more time" "Just because" . He called me and told me he wanted me to have a bone marrow biopsy ......... So I didresults 70%of my marrow is hairy cell).......Cancer... Rare form called Hairy cell Leukemia. (1 in 5 million ppl get this) This oncologist knows nothing about it and referred me to a specialist in Nashville. We decided when I got out of school I would do a 5 day M-F chemo with an 80% chance it can put me in remission. 2 days before I got out of school my local oncologist put me on Allopurinol 300mg QD to try to keep me from getting gout after the chemo starts. Well it literally about killed me after I took it for 8 days. I was home alone. early morning and I had noticed a rash on my upper chest the night before. googled it. STOP TAKING MED IT CAN BE FATAL!! I had made my mind up to go to Dr. this morning. I got up looking like I had been scalded. My entire body was bright red. I started dry heaving. I got in the shower 7:15 and almost immediately I knew I was in trouble. It was like my heart stopped. I went down in the shower.I couldn't feel anything or hear anything. My first thought was "OMG James is going to find me dead in the tub at 30 this afternoon". I told myself don't close your eyes. I don't know how long I laid there but I was able to pull my self up and get out of the shower. This landed me in the hospital for 2 days,postponed my chemo for a week. I had my chemo June 10-14th Done great . Never once got sick. But 3 days after finishing I spent 9 days in hospital with bacterial infection. They sent me home and 2 days later I was back in hospital with sepsis. spent 2 days in CCU because my B/P got 50/30 and my heart rate was to high. Anyway I came home on July 5th and haven't been back since. I have had such a hard time because with this type cancer I was not allowed to have the neupogen (helps you build WBC) if I got it it would cause my body to make Hairy cells. 2 weeks after getting home I was stricken with severe joint pain over my entire body. I cant take anything for it because the chemo messed up my kidneys. So here I sit. I do think the pain is getting better. I still have days I can't get up from a sitting position but I will wear it out. lol. I'm not able to go back to work just yet. But I will get there eventually. I did not lose any of my hair I did not lose any weight(darn it) and I have the prettiest fingernails ever.( I was a nail biter but my nails are hard as a rock) I just do the total opposite apparently to what a normal person does after getting chemo.
It is a chronic cancer and I will always have it. If I can go into remission I have to have my blood checked regularly to make sure it isn't coming back.
Please pray for me that I am in remission. I go in October 8th for repeat biopsy. It takes a week and a half to get results. Other than Joint pain I feel good. I hope this chemo works for me.
Thank you for reading.
Rhonda
Its been along time since I have posted here. I hope you all are well and are sewing up a storm. I check in every now and then but alot has gone on since I last posted.
I haven't been in my sewing room since December . I started getting sick about every 10-13 days . Same time,same symptoms over and over. Always at night, hard chills,spiked temp, dry heaves this went on all night then in the morning temp would be gone and I would have a major sinus headache. Me being me would carry on as normal but it kept happening over and over ( I started tracking it on my phone)13 times between Dec. and Feb. Well after a "spell" one night I got up to go to work and when I got up to leave that afternoon my hips felt like hot pokers sticking in them to the point I didn't think I would make it to my car. I went and had labs drawn and told them to draw anything and everything they could think of because something wasn't right. Came back WBC LOW and my inflammation levels were 10 times what they should be. They referred me to an oncologist He first told me I had a viral syndrome??? (Because I didn't look sick). But wanted to draw labs "one more time" "Just because" . He called me and told me he wanted me to have a bone marrow biopsy ......... So I didresults 70%of my marrow is hairy cell).......Cancer... Rare form called Hairy cell Leukemia. (1 in 5 million ppl get this) This oncologist knows nothing about it and referred me to a specialist in Nashville. We decided when I got out of school I would do a 5 day M-F chemo with an 80% chance it can put me in remission. 2 days before I got out of school my local oncologist put me on Allopurinol 300mg QD to try to keep me from getting gout after the chemo starts. Well it literally about killed me after I took it for 8 days. I was home alone. early morning and I had noticed a rash on my upper chest the night before. googled it. STOP TAKING MED IT CAN BE FATAL!! I had made my mind up to go to Dr. this morning. I got up looking like I had been scalded. My entire body was bright red. I started dry heaving. I got in the shower 7:15 and almost immediately I knew I was in trouble. It was like my heart stopped. I went down in the shower.I couldn't feel anything or hear anything. My first thought was "OMG James is going to find me dead in the tub at 30 this afternoon". I told myself don't close your eyes. I don't know how long I laid there but I was able to pull my self up and get out of the shower. This landed me in the hospital for 2 days,postponed my chemo for a week. I had my chemo June 10-14th Done great . Never once got sick. But 3 days after finishing I spent 9 days in hospital with bacterial infection. They sent me home and 2 days later I was back in hospital with sepsis. spent 2 days in CCU because my B/P got 50/30 and my heart rate was to high. Anyway I came home on July 5th and haven't been back since. I have had such a hard time because with this type cancer I was not allowed to have the neupogen (helps you build WBC) if I got it it would cause my body to make Hairy cells. 2 weeks after getting home I was stricken with severe joint pain over my entire body. I cant take anything for it because the chemo messed up my kidneys. So here I sit. I do think the pain is getting better. I still have days I can't get up from a sitting position but I will wear it out. lol. I'm not able to go back to work just yet. But I will get there eventually. I did not lose any of my hair I did not lose any weight(darn it) and I have the prettiest fingernails ever.( I was a nail biter but my nails are hard as a rock) I just do the total opposite apparently to what a normal person does after getting chemo.
It is a chronic cancer and I will always have it. If I can go into remission I have to have my blood checked regularly to make sure it isn't coming back.
Please pray for me that I am in remission. I go in October 8th for repeat biopsy. It takes a week and a half to get results. Other than Joint pain I feel good. I hope this chemo works for me.
Thank you for reading.
Rhonda
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