I've been thinking of writing this blog post since the end of August! I realize I've lost most of my readers by now, but I would still like to share the "after cancer" life. Many who stop by here have cancer, and I feel it might be helpful for them to know what life might be like after treatment is over. Also, it's important to me to let others, who haven't experienced cancer, know what life can be like.
How many of you thought that if you get cancer, and it hasn't spread, that you go through some treatments that make you sick and lose your hair, and then when you are finished you go on your merry way--never to think about cancer again? Show of hands?? Mine is raised too! I think I probably realized that life might be a little different for a survivor--you know, they stop and smell the roses more, that type of thing. Let me share a bit with you what life is really like.
FOLFOX is the standard chemo regimen for colorectal cancer. It does a great job of killing cancer cells. It also kills good things--like nerves, hair follicles, toenails, the skin on the hands and feet, etc. I've heard of people losing their hearing and having heart attacks from it. If you've ever had FOLFOX, you will probably have some sort of after effects from it. 4.5 years after finishing, I still have burning, numbness, and tingling in my hands and feet. I also had AC+T chemo for breast cancer. I completely lost my hair (which is still thinner now than before), and the Taxol made my neuropathy worse. It's another nasty combo that can also cause heart trouble.
Then there is the colon surgery. If you are fortunate enough to have a tumor that is high in the colon, you may not have as many issues as a person with a low tumor. But it is still a major surgery, and your colon will work differently, and there is always the risk of strictures and blockages caused by scar tissue. People with low tumors (like mine) have all sorts of changes in their bowels. Some days they can hardly leave the bathroom, and then, without warning they can be constipated for for several days. Some can't work because the issues are so bad. Some who had a temporary stoma, that was reversed and their colon was reconnected, have asked to go back to a bag because having to constantly "go" is ruining their life. Breast cancer surgery can cause "frozen shoulder" which can last for years, and some people never regain full use of their arm/s. Some surgeries move muscle around and then those people need physical therapy, and, again, they may never be able to get back to where they were before surgery. If lymph nodes are removed that person will always be at risk for lymphedema--which is swelling in the arm. They may need special massages, phys. therapy, and wear special sleeves. Once it starts, it never goes away. Oh, and it's usually not just one surgery for breast cancer, but many, over the course of many years. Did you expect your co-worker who had breast surgery to come back to work and be able to lift and carry and do everything they did before? Well, they may need to do things differently, and may be gone a lot for therapies and surgeries--be kind to them! And pray it never happens to you!
Some people who have cancer also have to have radiation. I had it for both my colorectal cancer, and my breast cancer. For some, this is the worst of all. There are lots of internal organs that also get blasted, esp. when the cancer is in the stomach or pelvic area. There are too many problems that can happen to even list here. Some are scar tissue build-up, colon and bladder scar tissue and bleeding, skin that never heals or is always easily irritated, weakening of structures that can lead to fistulas, hernias, and ruptures, and on and on. Other than tightening of the skin on my chest and armpit, I have not had too many side effects of the rads I had for breast cancer. It most likely caused some scarring on my heart and lungs, but hopefully I will never notice that. It also increased my risk for skin cancer and lung cancer--it is radiation after all! Both chemo and rads increase risk for cancer in the future.
Ok, those are only some things that can happen to colorectal and breast cancer survivors--there are many other types of cancer, each with their own set of problems. If you read all that, I want to thank you. You are a person who cares about others and wants to be aware of what people with cancer go through. Expecting your friend, co-worker, or loved one to be back to "normal" after their cancer is gone is not helpful. Ask them how they are doing, what side effects they still have, what help they may still need. I have a friend that just finished a long and difficult treatment for stage 4 colorectal cancer, and she is getting a break, but no one knows for how long. Her family has been pressuring her to go back to work, and they don't want to hear about any of her problems--she was even told she was making stuff up while she was still getting chemo!! I can't imagine! I'm sooooo very thankful for my family. They know I still have some difficult days, and sometimes I need to miss an event (which when I do I usually end up in tears because I'm sad and frustrated I have to stay home!). Thankfully, those days are getting fewer. 5.5 years out from my colon resection things are still slowly improving. I'm STILL learning what I can and can't eat, although sometimes there is just no rhyme or reason to it! Overall, I am doing better, and even my fatigue is better and I'm not completely exhausted every day after work.
Today is a "bad tummy" day, which causes me a lot of pain (you know, all those radiated areas!), and I came home from work and took a pain pill. (Which is why I have time to sit and write this--I can't do much else right now!) I hurt so bad that I wasn't going to suffer one more minute! Taking a pain pill is very rare--I took a 1/2 a pill about 2-3 weeks ago, and before that it had been about 6 weeks since I needed one. I had another surgery on my backside in Aug, and will need another one soon. Repairing things "back there" is tricky. One wrong cut could leave me needing diapers or a colostomy (bag) for the rest of my life. Also, radiated skin doesn't heal very well, so I could end up with a gaping wound that takes months and months to heal.
I had acupuncture this summer for neuropathy, and it helped a bit, but I think I'll save that for another post. I also need to tell you about my trip to Florida with my "Pearls" (breast cancer sisters!)! There are some blessings that came out of my cancer journey, and they are a huge blessing to me!
So, that gives me a few reasons to update again soon! If anyone with cancer comes across this blog, and wants to talk more, my e-mail address is nuttyoaks at gmail dot com. I have some great resources I can share with you, and am always willing to share my experiences and help you through your treatment!
God bless you all! Look for another update soon!
Tina
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Tuesday, October 7, 2014
Monday, February 11, 2013
Four Years!
February 6th was the 4 year anniversary of my tumor being found during a colonoscopy. I was having some symptoms that my primary Dr.(pcp) and gastro Dr. both thought were irritable bowel or colitis. Thankfully, before my pcp looked further into my symptoms, she wanted me to have a colonoscopy, and then we'd know more what we were dealing with. We were ALL surprised when the tumor was found. The gastro doc doing the procedure saw it right away (I was given some good drugs, but was fully awake) and said "See that? That shouldn't be there". After the exam the doc came in and told us he was sure it was cancer, although we needed to wait for the pathology report for the 'official' word. I am so grateful Rich was with me! We just held each other when the Dr. left. Then he came back, and told me he had set up a CT scan for me that afternoon. Things moved really fast! I remember the nurse giving me a hug when she walked us out and telling me I was going to be ok. That was so sweet, and yet scared me because I didn't really realize the gravity of the situation yet. Thanks to my 'happy drugs', I wasn't too upset yet--I told Rich in the truck after to stop looking so gloomy! Poor guy, he just found out his wife had cancer! I'm sure he was overwhelmed! (I don't think I'll ever know how hard all of this was on him, as he did a good job of keeping it from me. He was an EXCELLENT caregiver, and I'll always be grateful for that!)
Like I said, things moved quickly. My CT scan didn't show any other areas of cancer (except a possible lymph node). My gastro doc also contacted a surgeon, and an appt. to see him was scheduled, then my pre-op, then the surgery on Feb. 20th, just 2 weeks later. During surgery, 18" of my colon was removed and I was able to be reconnected. I came close to needing a colostomy, but am thankful I didn't! It was a tough surgery, and I was in the hospital 8 days. 2 of 20 lymph nodes had cancer, and I was stage 3b.
My wonderful oncologist told me this type of cancer could be CURED. Because of my young age (44), I was given everything they could possibly throw at me! None of my chemos were reduced, even with bad side effects. Once he even let me get chemo when my counts were really low--the nurse had to go ask him if the orders were correct! But he knew my counts always bounced back quickly when I had a neupogen shot, so he wasn't worried! I think it made a difference that my onc knew me well enough to know that I really wanted to complete all the treatments. If I had said it was too hard and I wanted to back off a bit he probably would have, as I think he would have respected my wishes. Same thing with radiation. That was even more difficult, and I was told I didn't need to finish, but it was important to me to finish those last 3, and I did! Although, I have to say, I never realized all the side effects I would have to live with!
Sometimes I have a hard time remembering how awful it all was, and other times I remember too well! I get frustrated dealing with painful side effects, but mostly, I am just so glad to be living life, cancer free. I am enjoying my children and grandchildren. My girls are such a blessing to me! They really stepped up and did everything they could to help me get through those tough days of cancer treatment. I'm sure it was hard to watch their mom get cancer TWICE. They are amazing young women!
Enough reminiscing...my 6 month CT scans are coming up next Monday, Feb. 18th. I'll also get my labs done that day too. Then the following week I see my oncologist and have a mammogram. This coming Thurs. (the 14th) I'll see my colorectal surgeon about the fistula, and I'm thinking I'll have to have surgery on that soon. That is a side effect from surgery and radiation. :(
1 more year and I'll hit that 5 year mark! I'm going to ask Dr. J about being 'cured'; if that still fits my case or not. I don't remember if the breast cancer will ever be considered cured--maybe because I was only stage 2b, I can be cured of that too. I'm not sure--I hope I remember to ask! April 1st will be 3 years from the breast cancer diagnosis.
Life goes on, and God is good! :)
Love,
Tina
Like I said, things moved quickly. My CT scan didn't show any other areas of cancer (except a possible lymph node). My gastro doc also contacted a surgeon, and an appt. to see him was scheduled, then my pre-op, then the surgery on Feb. 20th, just 2 weeks later. During surgery, 18" of my colon was removed and I was able to be reconnected. I came close to needing a colostomy, but am thankful I didn't! It was a tough surgery, and I was in the hospital 8 days. 2 of 20 lymph nodes had cancer, and I was stage 3b.
My wonderful oncologist told me this type of cancer could be CURED. Because of my young age (44), I was given everything they could possibly throw at me! None of my chemos were reduced, even with bad side effects. Once he even let me get chemo when my counts were really low--the nurse had to go ask him if the orders were correct! But he knew my counts always bounced back quickly when I had a neupogen shot, so he wasn't worried! I think it made a difference that my onc knew me well enough to know that I really wanted to complete all the treatments. If I had said it was too hard and I wanted to back off a bit he probably would have, as I think he would have respected my wishes. Same thing with radiation. That was even more difficult, and I was told I didn't need to finish, but it was important to me to finish those last 3, and I did! Although, I have to say, I never realized all the side effects I would have to live with!
Sometimes I have a hard time remembering how awful it all was, and other times I remember too well! I get frustrated dealing with painful side effects, but mostly, I am just so glad to be living life, cancer free. I am enjoying my children and grandchildren. My girls are such a blessing to me! They really stepped up and did everything they could to help me get through those tough days of cancer treatment. I'm sure it was hard to watch their mom get cancer TWICE. They are amazing young women!
Enough reminiscing...my 6 month CT scans are coming up next Monday, Feb. 18th. I'll also get my labs done that day too. Then the following week I see my oncologist and have a mammogram. This coming Thurs. (the 14th) I'll see my colorectal surgeon about the fistula, and I'm thinking I'll have to have surgery on that soon. That is a side effect from surgery and radiation. :(
1 more year and I'll hit that 5 year mark! I'm going to ask Dr. J about being 'cured'; if that still fits my case or not. I don't remember if the breast cancer will ever be considered cured--maybe because I was only stage 2b, I can be cured of that too. I'm not sure--I hope I remember to ask! April 1st will be 3 years from the breast cancer diagnosis.
Life goes on, and God is good! :)
Love,
Tina
Saturday, June 12, 2010
Been Busy!
I've been busy since I last posted on Monday. Tues. my prosthetic fitter appt. got cancelled, but I did go down to see the physical therapist. She mostly taught me about lymphedema-what it is, how to prevent it, and what to do if I get it. We talked a little about exercises for the arm and shoulder, but I have most of my movement back in my arm already.
Wed. I went to Superior Med. to be fitted for a prosthesis and bras. That's the place the lady that I was supposed to meet with on Tues. is from. Its in a nearby town--closer than the hospital. Since it had only been 2.5 weeks since my surgery, she didn't think I'd want the real deal yet--just the soft form. But I told her I need the real thing because the soft ones are too light and too hard to match. I can always switch later in the day if it gets to be too much. Every morning when I put my bra on with the "falsie" I think to myself I can't believe I'm doing this. It still seems so weird to me. I'm not sad about it anymore--but its still hard to believe it really happened.
After that I went to Party City with Rachel and Alyssa to buy stuff for Shonna's grad party. Brennan was with too and he looked so cute sitting up in the shopping cart! What a big boy he is now!
Thursday a good friend and prayer warrior, Marge, stopped by for a short visit and brought us a meal. We ate it that night, as I was tired from shopping. Thanks Marge!! It was very good! Later in the afternoon my mom, Alyssa and I went to Sam's Club to do some more shopping for the grad party. Wow, have I spent a lot of money the last few days!!
Friday I was supposed to go for a wig fitting at the American Cancer Society. I can get one free there because insurance doesn't pay for it (I'm not complaining--insurance has paid for everything else, including my prosthesis and bras!). I don't want to spend a lot of money on something I'll only wear for a few months. Anyways, I said "supposed to go" because I woke up very sick and could hardly move! I think it was some sort of flu. Thankfully not the stomach kind! But all my joints and back ached and I had a fever. I took lots of ibuprofen and Tylenol throughout the day. The saddest part was that I couldn't go to see my baby graduate! My head hurt too bad and I was very weak feeling. Jaren recorded it for me and Rich took pictures. And it will be playing on our local TV station too. Shonna didn't seem to mind, but I cried! I'm so proud of her. She is a "graduate with distinction" and had her pic in the local paper, along with the other top academic achievers. We are so blessed to have such wonderful daughters!
Today started off slow. I was still very achy over night and ended up sleeping on the recliner for a few hours. Still had the fever this morning, but I think it is gone now. I'm just a little weak and tired. I was able to go to a grad party this afternoon.
I still have so much to do for Shonna's party next week. I start chemo on Monday, and have a wig appt. on Wed. I hope I can make it to that one. I need to get one asap. My hair should start to fall out about 10-14 days after my first chemo. I need more scarves and hats too! I think I'm going to get it cut shorter later this week, and then figure out a plan for getting it shaved when the time comes. Another thing I have a hard time believing I'll have to do!! NOT looking forward to it. Its going to be hard not to just hibernate for the next 6 months or so. I'm so thankful for my church family because I know they will see me through this, and not care what I look like! And, of course, my family is soooo supportive too.
The good thing about starting chemo is that I'll feel like I'm doing something to fight the cancer. I do worry about it traveling to other parts of my body. That's my human nature. But the Holy Spirit, living inside me, reminds me that its not for me to worry about--it's all in God's hands.
When I was at the hospital on Tues. I stopped into the cancer center and asked one of the nurses of I could take an Ativan with the type of chemo I'm getting. She said yes! So I will be taking one before I go on Monday. It's for anxiety and nausea. I think I'll have both just walking in there knowing I have to get chemo again. I'm a bit nervous about being back in that chair! Thankfully I have wonderful nurses caring for me. And Rich will be right there with me too. :)
Well, that's a long post! I guess it usually ends up that way doesn't it?
Thanks for the continued prayers! God really is faithful and hears them. There is a reason....
Love you all!
Tina
Wed. I went to Superior Med. to be fitted for a prosthesis and bras. That's the place the lady that I was supposed to meet with on Tues. is from. Its in a nearby town--closer than the hospital. Since it had only been 2.5 weeks since my surgery, she didn't think I'd want the real deal yet--just the soft form. But I told her I need the real thing because the soft ones are too light and too hard to match. I can always switch later in the day if it gets to be too much. Every morning when I put my bra on with the "falsie" I think to myself I can't believe I'm doing this. It still seems so weird to me. I'm not sad about it anymore--but its still hard to believe it really happened.
After that I went to Party City with Rachel and Alyssa to buy stuff for Shonna's grad party. Brennan was with too and he looked so cute sitting up in the shopping cart! What a big boy he is now!
Thursday a good friend and prayer warrior, Marge, stopped by for a short visit and brought us a meal. We ate it that night, as I was tired from shopping. Thanks Marge!! It was very good! Later in the afternoon my mom, Alyssa and I went to Sam's Club to do some more shopping for the grad party. Wow, have I spent a lot of money the last few days!!
Friday I was supposed to go for a wig fitting at the American Cancer Society. I can get one free there because insurance doesn't pay for it (I'm not complaining--insurance has paid for everything else, including my prosthesis and bras!). I don't want to spend a lot of money on something I'll only wear for a few months. Anyways, I said "supposed to go" because I woke up very sick and could hardly move! I think it was some sort of flu. Thankfully not the stomach kind! But all my joints and back ached and I had a fever. I took lots of ibuprofen and Tylenol throughout the day. The saddest part was that I couldn't go to see my baby graduate! My head hurt too bad and I was very weak feeling. Jaren recorded it for me and Rich took pictures. And it will be playing on our local TV station too. Shonna didn't seem to mind, but I cried! I'm so proud of her. She is a "graduate with distinction" and had her pic in the local paper, along with the other top academic achievers. We are so blessed to have such wonderful daughters!
Today started off slow. I was still very achy over night and ended up sleeping on the recliner for a few hours. Still had the fever this morning, but I think it is gone now. I'm just a little weak and tired. I was able to go to a grad party this afternoon.
I still have so much to do for Shonna's party next week. I start chemo on Monday, and have a wig appt. on Wed. I hope I can make it to that one. I need to get one asap. My hair should start to fall out about 10-14 days after my first chemo. I need more scarves and hats too! I think I'm going to get it cut shorter later this week, and then figure out a plan for getting it shaved when the time comes. Another thing I have a hard time believing I'll have to do!! NOT looking forward to it. Its going to be hard not to just hibernate for the next 6 months or so. I'm so thankful for my church family because I know they will see me through this, and not care what I look like! And, of course, my family is soooo supportive too.
The good thing about starting chemo is that I'll feel like I'm doing something to fight the cancer. I do worry about it traveling to other parts of my body. That's my human nature. But the Holy Spirit, living inside me, reminds me that its not for me to worry about--it's all in God's hands.
When I was at the hospital on Tues. I stopped into the cancer center and asked one of the nurses of I could take an Ativan with the type of chemo I'm getting. She said yes! So I will be taking one before I go on Monday. It's for anxiety and nausea. I think I'll have both just walking in there knowing I have to get chemo again. I'm a bit nervous about being back in that chair! Thankfully I have wonderful nurses caring for me. And Rich will be right there with me too. :)
Well, that's a long post! I guess it usually ends up that way doesn't it?
Thanks for the continued prayers! God really is faithful and hears them. There is a reason....
Love you all!
Tina
Wednesday, May 19, 2010
Busy Busy
I have thought often, this last week, about updating my blog. But either I have been busy, or just too tired. I'm pretty tired right now too. I can hardly do anything after work these days. Not sure why I got so tired again, I had been doing better. I know my thyroid has been messed up again, and that takes a while to get back to where its supposed to be.
Alyssa and Jaren's wedding is coming up on Sunday. I'm so glad she has everything under control, because I haven't been much help! Tomorrow night we have a rehearsal, Friday night we have some other plans, Saturday we have the groom's dinner at the Zech's, and Sunday we have to up bright and early to start getting ready for the wedding/reception. Then Monday is when I lose my left breast to the surgeon. :(
After that I'll be able to finally get some rest, while I am healing. But as soon as I feel well enough I have to try on and buy a wig, buy scarves and hats, and get my hair cut short. Then it will be time to start chemo.
I really hope this chemo doesn't make me throw up. Its supposed to be a little easier to handle than my last stuff, so I hope that's the case for me. I've been reading the discussion boards and alot of people do have some nausea, and most have a few days of fatigue--where they lay around for 2 or 3 days. That's not so bad. It's also supposed to cause constipation--which, if it doesn't get too bad, is actually kinda nice! When I took pain meds after my lumpectomy it was nice to only have to go once or twice a day! I just make sure I take Senekot or something so it doesn't get too bad.
Last Saturday I had to shop for a dress for the wedding. I was not happy that I couldn't find just the right dress, and looking at cute clothes was depressing me. I felt like crying over every little thing, and couldn't figure out why. Then I realized that I was mourning what I was about to lose. Looking at clothes and knowing it'll be a long time before I look good in them again. And I was upset about losing my hair too. It just all caught up to me and I wanted to hide and cry. But, of course we had a busy day! A friend was talking to me at a grad party at church and she wanted to know how I was REALLY doing (a true friend!), and I started crying. We went into the prayer room (with Rich too), and talked a bit, and then she prayed for me. I felt much better after that, and have been feeling better since. I'm still not happy about the whole thing, more like resigned to the fact that its going to happen. I feel like my whole life is about to change. I don't want it to! I'm so thankful I have such a loving and supportive family. They will love me and be by my side no matter what I look like! I'm also blessed to be a part of a wonderful church family. They really let Jesus shine through them!
Only 2 more days of work! I don't know when I'll be able to go back. I'll let the school know in August whether or not I'll be coming back at the start of the school year.
Well, Rich and I are going to go for a little walk--gotta be back for American Idol! I'll put up some pics of the wedding when I get a chance.
Love to all!
Tina
1Peter 1:6-7, "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." (NIV)
Alyssa and Jaren's wedding is coming up on Sunday. I'm so glad she has everything under control, because I haven't been much help! Tomorrow night we have a rehearsal, Friday night we have some other plans, Saturday we have the groom's dinner at the Zech's, and Sunday we have to up bright and early to start getting ready for the wedding/reception. Then Monday is when I lose my left breast to the surgeon. :(
After that I'll be able to finally get some rest, while I am healing. But as soon as I feel well enough I have to try on and buy a wig, buy scarves and hats, and get my hair cut short. Then it will be time to start chemo.
I really hope this chemo doesn't make me throw up. Its supposed to be a little easier to handle than my last stuff, so I hope that's the case for me. I've been reading the discussion boards and alot of people do have some nausea, and most have a few days of fatigue--where they lay around for 2 or 3 days. That's not so bad. It's also supposed to cause constipation--which, if it doesn't get too bad, is actually kinda nice! When I took pain meds after my lumpectomy it was nice to only have to go once or twice a day! I just make sure I take Senekot or something so it doesn't get too bad.
Last Saturday I had to shop for a dress for the wedding. I was not happy that I couldn't find just the right dress, and looking at cute clothes was depressing me. I felt like crying over every little thing, and couldn't figure out why. Then I realized that I was mourning what I was about to lose. Looking at clothes and knowing it'll be a long time before I look good in them again. And I was upset about losing my hair too. It just all caught up to me and I wanted to hide and cry. But, of course we had a busy day! A friend was talking to me at a grad party at church and she wanted to know how I was REALLY doing (a true friend!), and I started crying. We went into the prayer room (with Rich too), and talked a bit, and then she prayed for me. I felt much better after that, and have been feeling better since. I'm still not happy about the whole thing, more like resigned to the fact that its going to happen. I feel like my whole life is about to change. I don't want it to! I'm so thankful I have such a loving and supportive family. They will love me and be by my side no matter what I look like! I'm also blessed to be a part of a wonderful church family. They really let Jesus shine through them!
Only 2 more days of work! I don't know when I'll be able to go back. I'll let the school know in August whether or not I'll be coming back at the start of the school year.
Well, Rich and I are going to go for a little walk--gotta be back for American Idol! I'll put up some pics of the wedding when I get a chance.
Love to all!
Tina
1Peter 1:6-7, "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." (NIV)
Wednesday, May 12, 2010
The Decision Has Been Made...
After talking with my surgeon and oncologist, I've decided to have a mastectomy. Just the left side, where the cancer is. Both recommended I delay any reconstruction until after chemo. Then I can decide what I want to do. That sounded good to me, because right now I just want to focus on getting rid of this cancer. Having to make reconstruction decisions would have been just too overwhelming right now.
The cancer at the margins of the tissue removed during the lumpectomy is DCIS. The surgeon feels we got all the invasive cancer. But apparently there is more DCIS (non-invasive cancer) than we knew about, and that can eventually become invasive.
I might still have to do radiation. I will have to meet with my radiation doc to discuss that. Studies have shown that if the cancer has spread to 1 lymph node there is no added benefit from radiation. If its in 4 lymph nodes, radiation is necessary. 2-3 lymph nodes is a gray area. But the cancer broke through one of my lymph nodes, which might make radiation more desirable.
The plan is: (I think I went through this all a few days ago, so skip this part if you want) Surgery on Monday, May 24th. 1 or 2 nights in the hospital. And yes I have to have another drain! My surgeon told me just because the first one hurt so bad, doesn't mean the next one will. His nurse said the armpit drains usually hurt the most. I'm just going to try not to think about it!
About 2 -3 weeks after surgery I will see my oncologist and start chemo. Andriamycin and cytoxan every 2 weeks for 4 cycles, so 2 months total. The day after chemo I will get a Neulasta shot. These are like the Neupogen shots I had to do last time, but Neulasta lasts longer. This chemo cocktail is even harder on the bone marrow than my last regimen (FOLFOX), so they don't wait until the white blood cell counts drop, they do the shots right away. One of these drugs is the one will make me lose my hair, and it happens pretty fast.
After 2 months of that I will start another chemo drug, Taxol, and Herceptin. I will first have another MUGA (heart) scan. I will get these 2 drugs weekly for 12 weeks (3months), then stop the Taxol and continue on the Herceptin every 3 weeks for 9 more months, so I will be on Herceptin for a year total. All the drugs I will get through infusion. The Taxol sometimes causes neuropathy, so we'll have to see if my neuropathy that I have from my last treatment starts to go away before that. There is a way the onc. can modify how I get the Taxol that lessens the side effects. This chemo cocktail is called AC+T (I think!).
When I'm finished with Taxol, and while still on Herceptin, I will start the radiation, if needed. That would be daily, Mon-Fri, for 5 to 7 weeks.
K, have I lost you yet? I just wanted to lay it all out there, the way the docs have explained it to me the last 2 days.
The reason I have to have the heart scans is because both the Andriamycin and Herceptin can cause heart problems. The problem usually goes away after stopping the medicine. A bit scary, especially given my family history of heart trouble, but I'll just have to trust God that He will be watching over me!
Oh! I almost forgot...I DO NOT have the breast cancer gene. That is good news. I can beat this and it may NEVER return!
I've been hearing "Do not be afraid" and "Trust Me" a lot lately. Also, I wrote in my notebook the other day "THERE IS A REASON", and I feel that was from God too.
I'm a little, um, freaked out maybe? that I have made the decision to have the mastectomy and put it on the calendar. Other than that, I'm really doing well. Really, I am! Just because I know God is with me, and His will is being done in my life, doesn't mean I'm going to enjoy surgery, or losing my hair. But He is giving me peace, and I know this is what I have to do. So its all good. :)
Blessings!
Tina
The cancer at the margins of the tissue removed during the lumpectomy is DCIS. The surgeon feels we got all the invasive cancer. But apparently there is more DCIS (non-invasive cancer) than we knew about, and that can eventually become invasive.
I might still have to do radiation. I will have to meet with my radiation doc to discuss that. Studies have shown that if the cancer has spread to 1 lymph node there is no added benefit from radiation. If its in 4 lymph nodes, radiation is necessary. 2-3 lymph nodes is a gray area. But the cancer broke through one of my lymph nodes, which might make radiation more desirable.
The plan is: (I think I went through this all a few days ago, so skip this part if you want) Surgery on Monday, May 24th. 1 or 2 nights in the hospital. And yes I have to have another drain! My surgeon told me just because the first one hurt so bad, doesn't mean the next one will. His nurse said the armpit drains usually hurt the most. I'm just going to try not to think about it!
About 2 -3 weeks after surgery I will see my oncologist and start chemo. Andriamycin and cytoxan every 2 weeks for 4 cycles, so 2 months total. The day after chemo I will get a Neulasta shot. These are like the Neupogen shots I had to do last time, but Neulasta lasts longer. This chemo cocktail is even harder on the bone marrow than my last regimen (FOLFOX), so they don't wait until the white blood cell counts drop, they do the shots right away. One of these drugs is the one will make me lose my hair, and it happens pretty fast.
After 2 months of that I will start another chemo drug, Taxol, and Herceptin. I will first have another MUGA (heart) scan. I will get these 2 drugs weekly for 12 weeks (3months), then stop the Taxol and continue on the Herceptin every 3 weeks for 9 more months, so I will be on Herceptin for a year total. All the drugs I will get through infusion. The Taxol sometimes causes neuropathy, so we'll have to see if my neuropathy that I have from my last treatment starts to go away before that. There is a way the onc. can modify how I get the Taxol that lessens the side effects. This chemo cocktail is called AC+T (I think!).
When I'm finished with Taxol, and while still on Herceptin, I will start the radiation, if needed. That would be daily, Mon-Fri, for 5 to 7 weeks.
K, have I lost you yet? I just wanted to lay it all out there, the way the docs have explained it to me the last 2 days.
The reason I have to have the heart scans is because both the Andriamycin and Herceptin can cause heart problems. The problem usually goes away after stopping the medicine. A bit scary, especially given my family history of heart trouble, but I'll just have to trust God that He will be watching over me!
Oh! I almost forgot...I DO NOT have the breast cancer gene. That is good news. I can beat this and it may NEVER return!
I've been hearing "Do not be afraid" and "Trust Me" a lot lately. Also, I wrote in my notebook the other day "THERE IS A REASON", and I feel that was from God too.
I'm a little, um, freaked out maybe? that I have made the decision to have the mastectomy and put it on the calendar. Other than that, I'm really doing well. Really, I am! Just because I know God is with me, and His will is being done in my life, doesn't mean I'm going to enjoy surgery, or losing my hair. But He is giving me peace, and I know this is what I have to do. So its all good. :)
Blessings!
Tina
Thursday, April 29, 2010
I'm Sure There's a Silver Lining Somewhere...
My oncologist, Dr. Jahagirdar, called me tonight (about 7 pm) to give me the results of my path report. Not much good news there, unfortunately. So, here goes:
The area of cancer (not necessarily a tumor) is 3.5cm (1 1/4"?); 3 of 9 lymph nodes have cancer; stage 2B; estrogen and progesterone negative; Her 2 positive. Her 2 is a hormone that, in my case, causes the tumor to grow, so I will have to get herceptin infusions to block the hormone.
The plan will probably look something like this: Adriamycin and Cytoxin (not sure about spelling yet!) chemo cocktail every 2 weeks x 4 (2months), then another chemo drug, Taxol, once per week for 12 weeks. I will start the Herceptin at the same time as the Taxol, and the Herceptin will continue on for 7 (?) months.
Also, the margins of the lumpectomy were not clear, so I will need another surgery(re-excision) to remove more tissue. Dr. J. thinks I should consider a mastectomy, because then I wouldn't have to have radiation, and I wouldn't have to worry about the margins coming back clear. It is possible that if I have a re-excision that the margins still may not be clear and I'd have to go back in again. Now, I do have a lot of tissue, but removing even more tissue could leave me quite lopsided and disfigured. I want to wait until we have the genetic test results and talk to my surgeon about all my options before I make any decision.
Next Friday I have my ct scans scheduled, and Dr. J wants to try to get some other tests done too. He wants me to have a bone scan (breast cancer sometimes travels to the bones), and an EKG and Muga test for my heart. Some chemo drugs are hard on the heart so they do the tests first. Someone should be calling me tomorrow to schedule everything for next week. I took next week off too because my surgeon didn't want me going back to work yet.
We are all a bit bummed right now. I'm leaning heavily on God. I'm scared of what the scans might find, because I'm not sure how much more of this I can take.
Rest assured though, God is with me.
Love
Tina
The area of cancer (not necessarily a tumor) is 3.5cm (1 1/4"?); 3 of 9 lymph nodes have cancer; stage 2B; estrogen and progesterone negative; Her 2 positive. Her 2 is a hormone that, in my case, causes the tumor to grow, so I will have to get herceptin infusions to block the hormone.
The plan will probably look something like this: Adriamycin and Cytoxin (not sure about spelling yet!) chemo cocktail every 2 weeks x 4 (2months), then another chemo drug, Taxol, once per week for 12 weeks. I will start the Herceptin at the same time as the Taxol, and the Herceptin will continue on for 7 (?) months.
Also, the margins of the lumpectomy were not clear, so I will need another surgery(re-excision) to remove more tissue. Dr. J. thinks I should consider a mastectomy, because then I wouldn't have to have radiation, and I wouldn't have to worry about the margins coming back clear. It is possible that if I have a re-excision that the margins still may not be clear and I'd have to go back in again. Now, I do have a lot of tissue, but removing even more tissue could leave me quite lopsided and disfigured. I want to wait until we have the genetic test results and talk to my surgeon about all my options before I make any decision.
Next Friday I have my ct scans scheduled, and Dr. J wants to try to get some other tests done too. He wants me to have a bone scan (breast cancer sometimes travels to the bones), and an EKG and Muga test for my heart. Some chemo drugs are hard on the heart so they do the tests first. Someone should be calling me tomorrow to schedule everything for next week. I took next week off too because my surgeon didn't want me going back to work yet.
We are all a bit bummed right now. I'm leaning heavily on God. I'm scared of what the scans might find, because I'm not sure how much more of this I can take.
Rest assured though, God is with me.
Love
Tina
Wednesday, January 27, 2010
Things That Helped Me Through the Tough Days
If anyone noticed the other day that I put up a new post with a video of Shonna, I had the wrong video. The one I wanted was too big and after waiting several hours it still didn't finish loading, so I deleted the post. For my facebook friends--the video is on my page. Its Shonna singing "Lead me to the Cross", and it is an awesome song--listen to the words!
Ok--on to the main reason I wanted to blog today!
As many of you know (and certainly those who have been through chemo know what I'm talking about!), things get pretty tough for a few days during each chemo cycle. There have been days where it was REALLY hard to keep a positive attitude--some days were downright depressing!
After one of my worst cycles, I made 2 lists to help me when things got bad. When I was so out of it, I didn't care about food or finding things to help me, and my brain didn't work well enough to think of things, so I made the lists. The lists helped me and others in the house know what I might want to eat, or what I could do to take my mind off how bad I felt.
My first list is titled "Things to Help Me Through". Here are a few of things on my list:
Music-->choose cds ahead of time and have them ready
Rich read to me--> I like listening to people talk, but carrying on a conversation is REALLY difficult.
Girls talk to me (for a short while!)--> Just wanted them to tell me about their day, school, baby, etc. Again, I mostly could only listen, not talk back.
Books and magazines-->Pick them out ahead of time and have them ready.
Tv-->I am blessed that I was able to buy a 22" tv for my bedroom. I also have family that helped with the cost when they found out I wanted one. Pick out dvds ahead of time. My sister bought me some funny ones!
Prayer time-->I put this on my list so I would remember how much better I felt if I took time to talk to God and give Him praise! Keep a prayer journal or notebook handy.
Ipod-->I have the New Testament on it--again, something to listen to.
Books on tape.
The important thing is to have everything ready and nearby your comfy spot (mine is my bed!) so you don't have to think about anything or make any decisions. If I had to think about it I would just give up and lay there feeling miserable.
My 2nd list is "Foods to Eat". I have had a hard time finding things that taste good, and since I can't have anything cold that makes it even harder. I would think of things I could've had, but forget about them when I wasn't feeling good. Here are a few food items:
Fried egg sandwich
PB&J
Ham and Cheese sandwich
Mac and Cheese
Ramen noodles
Rice
Instant mashed potatoes
Bananas
grapes
oranges and clementines (lifesavers for me!)
Soft pretzels
Oyster crackers
Ravioli
Tomato soup
Cheese and Crackers
I also have a basket on the counter with pudding and applesauce cups, tho I am pretty tired of both right now! Also, for breakfast I have been eating oatmeal, Malto Meal, and instant oatmeal. Can't wait to be able to have cold cereal again!!
I've developed a real sweet tooth--hopefully it goes away!! I've been eating cinn. rolls, orange slice candy, little Snicker's bars, and lots of other junk food. Today I threw away what was left of the Fritos--No excuse to have them around anymore. Its time to start finding healthier snacks again. I've been craving salads--I think its my body's way of telling me its time for more healthy stuff. :)
Don't feel bad about eating junk food during chemo! Just do what you have to to get you through it!! You'll have enough your mind w/o feeling guilty about your diet! By planning ahead for the bad days, you can make sure to have some healthy stuff around too.
Love and Blessings!
Tina
ps
My son-in-law Jaren is finally back in MN!! His deployment is over!! He's very happy to be back, but says he feels like he's just on leave--hasn't sunk in yet that he's here to stay, for awhile at least! He loves the apartment and furniture Alyssa got, and everything she's done with it. So proud of them both!!
Ok--on to the main reason I wanted to blog today!
As many of you know (and certainly those who have been through chemo know what I'm talking about!), things get pretty tough for a few days during each chemo cycle. There have been days where it was REALLY hard to keep a positive attitude--some days were downright depressing!
After one of my worst cycles, I made 2 lists to help me when things got bad. When I was so out of it, I didn't care about food or finding things to help me, and my brain didn't work well enough to think of things, so I made the lists. The lists helped me and others in the house know what I might want to eat, or what I could do to take my mind off how bad I felt.
My first list is titled "Things to Help Me Through". Here are a few of things on my list:
Music-->choose cds ahead of time and have them ready
Rich read to me--> I like listening to people talk, but carrying on a conversation is REALLY difficult.
Girls talk to me (for a short while!)--> Just wanted them to tell me about their day, school, baby, etc. Again, I mostly could only listen, not talk back.
Books and magazines-->Pick them out ahead of time and have them ready.
Tv-->I am blessed that I was able to buy a 22" tv for my bedroom. I also have family that helped with the cost when they found out I wanted one. Pick out dvds ahead of time. My sister bought me some funny ones!
Prayer time-->I put this on my list so I would remember how much better I felt if I took time to talk to God and give Him praise! Keep a prayer journal or notebook handy.
Ipod-->I have the New Testament on it--again, something to listen to.
Books on tape.
The important thing is to have everything ready and nearby your comfy spot (mine is my bed!) so you don't have to think about anything or make any decisions. If I had to think about it I would just give up and lay there feeling miserable.
My 2nd list is "Foods to Eat". I have had a hard time finding things that taste good, and since I can't have anything cold that makes it even harder. I would think of things I could've had, but forget about them when I wasn't feeling good. Here are a few food items:
Fried egg sandwich
PB&J
Ham and Cheese sandwich
Mac and Cheese
Ramen noodles
Rice
Instant mashed potatoes
Bananas
grapes
oranges and clementines (lifesavers for me!)
Soft pretzels
Oyster crackers
Ravioli
Tomato soup
Cheese and Crackers
I also have a basket on the counter with pudding and applesauce cups, tho I am pretty tired of both right now! Also, for breakfast I have been eating oatmeal, Malto Meal, and instant oatmeal. Can't wait to be able to have cold cereal again!!
I've developed a real sweet tooth--hopefully it goes away!! I've been eating cinn. rolls, orange slice candy, little Snicker's bars, and lots of other junk food. Today I threw away what was left of the Fritos--No excuse to have them around anymore. Its time to start finding healthier snacks again. I've been craving salads--I think its my body's way of telling me its time for more healthy stuff. :)
Don't feel bad about eating junk food during chemo! Just do what you have to to get you through it!! You'll have enough your mind w/o feeling guilty about your diet! By planning ahead for the bad days, you can make sure to have some healthy stuff around too.
Love and Blessings!
Tina
ps
My son-in-law Jaren is finally back in MN!! His deployment is over!! He's very happy to be back, but says he feels like he's just on leave--hasn't sunk in yet that he's here to stay, for awhile at least! He loves the apartment and furniture Alyssa got, and everything she's done with it. So proud of them both!!
Wednesday, January 20, 2010
I'm DONE!!!!!!!!!!!
The top picture is the certificate that the chemo nurses gave me for being done. The 2nd picture is the angels that have cared for me all these months. From left to right: Carol, Cheryl (my nurse for the first several rounds), me, Andrea (my main nurse for the last few months), and Sheryl. I've gotten to know all the nurses, as they all help each other out when one is at lunch or busy with another patient. They are all wonderful, as are the receptionists, and of course the doctors. Not a crabby one in the whole place. I highly recommend Regions Cancer Care Center!
I will have to go in every 4-6 weeks to get my port flushed. Andrea told me to make sure I bring in pictures of Baby Brennan! I'll keep the port at least until I have my ct scan (in 4 months), then I'll probably have it removed. What have others done? I'll have ct scans every 6months for awhile. Is it worth it to keep it in?
A few days before my scan, I'll see the doc and get blood tests done. He saw me in the infusion room today and said he didn't want to see me again for several weeks! I said "I don't want to see you either!", and we both laughed. I will miss all of them.
The end of Feb. I'll have my colonoscopy. The doc said depending on what things look like then, I would have one done every 1-3 years. I'm sort of glad to be having one done ( I know, I'm weird!), because I'm so curious to see what things look like after having 18" of my colon removed. My insides have been rearranged and I want to know what's going on in there! I'm hoping it won't hurt. I think sometimes it does after surgery because there might be scar tissue, or it might be narrower. The first one didn't hurt at all--but I'll never forget what that tumor looked like!
24 hours after I have the pump removed, Sat. afternoon, I'll do my last Neupogen shot. It will help keep my wbc from getting too low, and help me to stay healthy.
I've been warned several times that my neuropathy might take 6months or longer to go away. I'm hoping the cold sensitivity goes away enough in 4 weeks so I can stand outside for an hour doing recess at work. I'm supposed to go back to work on Tues. Feb. 16th--4 weeks from yesterday. I'm nervous about going back! I hope I'm not too tired after work, and I hope my chemo brain isn't too bad--I've forgotten alot of the kids' names! Plus I'll have to learn all new ones in Kindergarten. Thankfully the teachers and staff I work with are very kind and understanding!
Well, I've got about a week of yuckiness to get through, then when I start to feel better, I'll keep feeling better...and better, and better!
Here's to the rest of my life!! I'm praying that I'll be around for a long, long time!!
Love and Blessings to All!
Tina
Tuesday, January 19, 2010
Rachel Wants To Know How I'm Doing....
So I will update my blog just for her! Because, gosh, I haven't seen her in 2 whole days and she lives a whole 5 minutes away! (Love you Rachel!)
There really isn't a whole lot to say. I've been feeling better and better each day. It'll be 3 weeks tomorrow since my last chemo, and the only side effects I have are tingling fingers and toes (my fingers tingle with each tap on the keyboard!), and my legs are still weak. Shopping still wears me out!
I've been sleeping well--making it all night with no trips to the bathroom, or staring at the ceiling with my mind racing. I do notice that I fall asleep much faster than I ever did before. Rich and I listen to old time radio shows on the Ipod at bedtime each night, and I hardly ever make it to the end of the show, even though they are only 25-30 minutes long. That rarely happened pre-cancer.
I am able to enjoy cold things now, but my teeth seem extra sensitive to cold, esp. my molars. Eating an orange from the fridge hurts my teeth, as does rinsing my mouth with cold water.
Last week I didn't care too much about chemo being delayed, but now I'm REALLY hoping I can get it tomorrow. So please pray that all my blood counts are ok so I can have my final round! Its so hard to go back to feeling sick after feeling so good. I just want it done so I NEVER have to experience those awful days again!
Tonight I'll get my bag ready for chemo tomorrow. My pump, a notepad, and a hot choc. packet are already in there, and I'll put in some magazines, a book, an applesauce cup, a pudding cup, and then Rich will add his books too. Oh, can't forget my scarf! I have to keep my nose and mouth covered when I leave, and I also drink the hot chocolate to keep my throat warm. I'll never forget that feeling of not being able to swallow and how awful that felt. It was after my 4th round last Spring, and my throat froze up from the a/c in the hosp. Regions has a new underground parking ramp (opened just in time for winter!), and Rich usually parks in the 2nd level because its warmer down there. I don't like being underground, but it is much warmer than the other ramp!
Shonna is singing with the worship team next Sunday at church. She hasn't done it in a while because she's been too busy. I'm a little bummed because I don't usually feel well enough to make it to church the Sunday after chemo. We have a new camcorder, so if I absolutely can't make it, I'll have Rich record it for me. Hopefully she'll have a solo--she usually does, but not always. Bridgewood Community church is a great church if anyone wants to come! Contemporary worship, relevant messages, Bible based and VERY friendly! Its on Lexington, just north of 109th, in Blaine.
Well, Rachel, if you want to know anymore, you and Brennan should come for a visit!! :)
To all my blog friends, I want you to know that you are all on my prayer list and I pray for you often! God is listening and He loves you all!
Take care!
Tina
There really isn't a whole lot to say. I've been feeling better and better each day. It'll be 3 weeks tomorrow since my last chemo, and the only side effects I have are tingling fingers and toes (my fingers tingle with each tap on the keyboard!), and my legs are still weak. Shopping still wears me out!
I've been sleeping well--making it all night with no trips to the bathroom, or staring at the ceiling with my mind racing. I do notice that I fall asleep much faster than I ever did before. Rich and I listen to old time radio shows on the Ipod at bedtime each night, and I hardly ever make it to the end of the show, even though they are only 25-30 minutes long. That rarely happened pre-cancer.
I am able to enjoy cold things now, but my teeth seem extra sensitive to cold, esp. my molars. Eating an orange from the fridge hurts my teeth, as does rinsing my mouth with cold water.
Last week I didn't care too much about chemo being delayed, but now I'm REALLY hoping I can get it tomorrow. So please pray that all my blood counts are ok so I can have my final round! Its so hard to go back to feeling sick after feeling so good. I just want it done so I NEVER have to experience those awful days again!
Tonight I'll get my bag ready for chemo tomorrow. My pump, a notepad, and a hot choc. packet are already in there, and I'll put in some magazines, a book, an applesauce cup, a pudding cup, and then Rich will add his books too. Oh, can't forget my scarf! I have to keep my nose and mouth covered when I leave, and I also drink the hot chocolate to keep my throat warm. I'll never forget that feeling of not being able to swallow and how awful that felt. It was after my 4th round last Spring, and my throat froze up from the a/c in the hosp. Regions has a new underground parking ramp (opened just in time for winter!), and Rich usually parks in the 2nd level because its warmer down there. I don't like being underground, but it is much warmer than the other ramp!
Shonna is singing with the worship team next Sunday at church. She hasn't done it in a while because she's been too busy. I'm a little bummed because I don't usually feel well enough to make it to church the Sunday after chemo. We have a new camcorder, so if I absolutely can't make it, I'll have Rich record it for me. Hopefully she'll have a solo--she usually does, but not always. Bridgewood Community church is a great church if anyone wants to come! Contemporary worship, relevant messages, Bible based and VERY friendly! Its on Lexington, just north of 109th, in Blaine.
Well, Rachel, if you want to know anymore, you and Brennan should come for a visit!! :)
To all my blog friends, I want you to know that you are all on my prayer list and I pray for you often! God is listening and He loves you all!
Take care!
Tina
Friday, January 8, 2010
Life is Good!
Been feeling much better the last few days. I've had the urge to clean and organize! Unfortunately I can't do as much as I would like--I take frequent breaks! When you go through several days of awful fatigue, life seems so good and exciting when you come out of it.
Can't wait til next Monday or Tuesday, when my cold sensitivity goes away enough for me to have a "melted" smoothie. Didn't get one last round, and I'm craving that yummy berry flavor.
My last round of chemo is scheduled for Wed., but it might be delayed due to blood counts--specifically low platelets. My wbc should be fine because I did 4 shots over the weekend, and I will do a shot on both Sunday and Monday. The first 4 didn't cause me any back pain, I think because my counts weren't low yet. We'll see if the next 2 hurt. They seem to only hurt bad if my counts are really low. Then the shots cause a lot of activity in my bone marrow/spine.
My neuropathy is getting more noticeable in my fingers and toes. It doesn't hurt, but with each tap on the keyboard my fingers tingle. My slippers brushing against my big toes make them tingle. I'm glad I'm almost done with chemo, because if the neuropathy gets bad enough the doc would have to discontinue the Oxaliplatin. Hopefully the mild tingling I have won't take too long to go away. Sometimes it can take a year to go away, and sometimes its permanent.
From reading the blogs of others, and talking to my doc, I know that there may be side effects from the chemo and especially the radiation for a long time to come. I'm glad I know this ahead of time. But I feel like I'll be so happy to be declared "cancer free" that anything else won't matter!
Hope everyone has a great weekend!
Blessings!
Tina
Can't wait til next Monday or Tuesday, when my cold sensitivity goes away enough for me to have a "melted" smoothie. Didn't get one last round, and I'm craving that yummy berry flavor.
My last round of chemo is scheduled for Wed., but it might be delayed due to blood counts--specifically low platelets. My wbc should be fine because I did 4 shots over the weekend, and I will do a shot on both Sunday and Monday. The first 4 didn't cause me any back pain, I think because my counts weren't low yet. We'll see if the next 2 hurt. They seem to only hurt bad if my counts are really low. Then the shots cause a lot of activity in my bone marrow/spine.
My neuropathy is getting more noticeable in my fingers and toes. It doesn't hurt, but with each tap on the keyboard my fingers tingle. My slippers brushing against my big toes make them tingle. I'm glad I'm almost done with chemo, because if the neuropathy gets bad enough the doc would have to discontinue the Oxaliplatin. Hopefully the mild tingling I have won't take too long to go away. Sometimes it can take a year to go away, and sometimes its permanent.
From reading the blogs of others, and talking to my doc, I know that there may be side effects from the chemo and especially the radiation for a long time to come. I'm glad I know this ahead of time. But I feel like I'll be so happy to be declared "cancer free" that anything else won't matter!
Hope everyone has a great weekend!
Blessings!
Tina
Friday, November 20, 2009
Round 5, Day 1 and 2
So I'm going to start my log of round 5. I think I'll just add to this blog for a few days, then start a new one for the next 3 days or so, and so on until its time for round 6. Follow along if you want!
Today I probably shouldn't have had chemo because my neutrophils and overall white blood cell counts were pretty low. The doc let me go ahead, knowing I respond quickly to neupogen shots, and knowing that I wouldn't be able to have Thanksgiving at all if we waited until next week. He did say we are taking a risk, and I should wear a mask if I'm around anyone sick (remember before he told me I didn't need a mask?). I need to watch for fevers and signs of infection, and call immediately with any concerns. I wasn't too worried until I went back to the infusion room to start chemo and my nurse (who had seen my blood counts) was REALLY surprised the doc was letting me get chemo. She assumed I wasn't. She said that's the lowest she's seen the doc allow. THEN I started to worry! But really I'm not too concerned. Unfortunately Shonna is sick with a cold, but she's been sick alot this Fall and I haven't caught anything yet. She's good about washing her hands and I put out a separate hand towel in the bathroom just for me to use. I'll stay home for the next few days too--no running to Target or going out to eat. I have to do a shot on Sunday, after my pump is disconnected, then one on Monday. Tuesday I won't need to do a shot if I get a lot of back pain from it on Sun and Mon, because the back pain indicates the bone marrow is making more white blood cells. If I don't have much pain, then I'll do a 3rd shot on Tues. Then 2 days before my next chemo I'll do one more shot. Last round I did 2 shots at home and didn't have much pain at all, which was unusual.
Side effects for today are: cramping of hands, calves, lips, and throat, and extreme cold sensitivity in my hands and feet. My calves are twitching as I sit here and I do a funny stiff legged walk. The throat thing makes it a little hard to swallow, and I have to keep it warm or it gets worse. Other than the cold sensitivity, the other cramping and such should be gone tomorrow. I feel a little tired and out of it, but not too bad.
Brennan update:
Rachel was very excited when she called me this afternoon. Brennan exceeded his minimum amount of milk at the 3pm check today! (and he pooped on his own too!) He is finally making HUGE improvements. Rachel and Ken are spending the weekend in a family room at the hospital and will have Brennan in the room with them. We might actually have him here for Thanksgiving! I'm soooo excited. Alyssa and Shonna have never held their nephew and really want to see him too.
Oh, I wanted to add something about Jaren too--he and a few other guys are leaving the Basra base and heading up near Baghdad. Something about driving around a General. Anyway, please pray for his safety. He should be heading back to the US (Utah, I think) for some training on Dec. 30th, then home around Feb 1st. Alyssa and I have been apartment hunting, and she hopes to move into someplace Jan 1st, so it will be all ready for Jaren when he comes home. Its tough to make that final decision on an apartment tho! She's being very thorough and I know she will make the right choice.
Tomorrow I'll add to this blog, and change the title to "Round 5, Day 1 and 2".
Until then, take care everyone!!
Love,
Tina
DAY 2
I didn't sleep very much last night, only a few hours. The decadron they give me in my IV with the Zofran keeps me awake. Hopefully I can sleep tonight! I do have Ambien to take, but I don't like to take it with the steroid. Not sure why, just seems like too many drugs at once.
I still have some muscle cramps, but not as bad as yesterday. I've had a little nausea when my stomach gets hungry, so have been snacking alot today.
Took my second Emend pill at 12:30. They give me 1 larger dose pill before chemo, then I take a smaller 1 for the 2 days after. I also take Zofran first thing in the morning and then Decadron after I eat. Then I take them both at bedtime too. I'll continue the Zofran for several days, but only take Decadron til tomorrow, then I'll be done with that. Although, I might try a Decadron on one of my really bad days to see if it perks me up a little. I mentioned it to the nurse, and she agreed that it might help a little, and said to just take one in the morning.
Shonna is still sick with a bad sore throat and stuffy head. I wanted her to go to a Minute Clinic or urgent care today, but she worked instead. She was going to leave early, but decided not to. Maybe tomorrow before she works at 1. I will be relieved when I finally do my Neupogen shot tomorrow eve. to raise my white blood count!
Thanks Ken for the info on the masks again. I'm not going to make Shonna wear a mask, but I do worry about surfaces she touches, even tho she is good about washing her hands. I wipe stuff down with disinfectant wipes.
Thank you to the Bridgewood folks for the 2 meals this week!! Much appreciated! Rich was just going to have cereal last night, but instead we all had yummy soup (and too much cake :)
Tomorrow I'll start a new blog--this one is getting too long. :)
Blessings!
Tina
Today I probably shouldn't have had chemo because my neutrophils and overall white blood cell counts were pretty low. The doc let me go ahead, knowing I respond quickly to neupogen shots, and knowing that I wouldn't be able to have Thanksgiving at all if we waited until next week. He did say we are taking a risk, and I should wear a mask if I'm around anyone sick (remember before he told me I didn't need a mask?). I need to watch for fevers and signs of infection, and call immediately with any concerns. I wasn't too worried until I went back to the infusion room to start chemo and my nurse (who had seen my blood counts) was REALLY surprised the doc was letting me get chemo. She assumed I wasn't. She said that's the lowest she's seen the doc allow. THEN I started to worry! But really I'm not too concerned. Unfortunately Shonna is sick with a cold, but she's been sick alot this Fall and I haven't caught anything yet. She's good about washing her hands and I put out a separate hand towel in the bathroom just for me to use. I'll stay home for the next few days too--no running to Target or going out to eat. I have to do a shot on Sunday, after my pump is disconnected, then one on Monday. Tuesday I won't need to do a shot if I get a lot of back pain from it on Sun and Mon, because the back pain indicates the bone marrow is making more white blood cells. If I don't have much pain, then I'll do a 3rd shot on Tues. Then 2 days before my next chemo I'll do one more shot. Last round I did 2 shots at home and didn't have much pain at all, which was unusual.
Side effects for today are: cramping of hands, calves, lips, and throat, and extreme cold sensitivity in my hands and feet. My calves are twitching as I sit here and I do a funny stiff legged walk. The throat thing makes it a little hard to swallow, and I have to keep it warm or it gets worse. Other than the cold sensitivity, the other cramping and such should be gone tomorrow. I feel a little tired and out of it, but not too bad.
Brennan update:
Rachel was very excited when she called me this afternoon. Brennan exceeded his minimum amount of milk at the 3pm check today! (and he pooped on his own too!) He is finally making HUGE improvements. Rachel and Ken are spending the weekend in a family room at the hospital and will have Brennan in the room with them. We might actually have him here for Thanksgiving! I'm soooo excited. Alyssa and Shonna have never held their nephew and really want to see him too.
Oh, I wanted to add something about Jaren too--he and a few other guys are leaving the Basra base and heading up near Baghdad. Something about driving around a General. Anyway, please pray for his safety. He should be heading back to the US (Utah, I think) for some training on Dec. 30th, then home around Feb 1st. Alyssa and I have been apartment hunting, and she hopes to move into someplace Jan 1st, so it will be all ready for Jaren when he comes home. Its tough to make that final decision on an apartment tho! She's being very thorough and I know she will make the right choice.
Tomorrow I'll add to this blog, and change the title to "Round 5, Day 1 and 2".
Until then, take care everyone!!
Love,
Tina
DAY 2
I didn't sleep very much last night, only a few hours. The decadron they give me in my IV with the Zofran keeps me awake. Hopefully I can sleep tonight! I do have Ambien to take, but I don't like to take it with the steroid. Not sure why, just seems like too many drugs at once.
I still have some muscle cramps, but not as bad as yesterday. I've had a little nausea when my stomach gets hungry, so have been snacking alot today.
Took my second Emend pill at 12:30. They give me 1 larger dose pill before chemo, then I take a smaller 1 for the 2 days after. I also take Zofran first thing in the morning and then Decadron after I eat. Then I take them both at bedtime too. I'll continue the Zofran for several days, but only take Decadron til tomorrow, then I'll be done with that. Although, I might try a Decadron on one of my really bad days to see if it perks me up a little. I mentioned it to the nurse, and she agreed that it might help a little, and said to just take one in the morning.
Shonna is still sick with a bad sore throat and stuffy head. I wanted her to go to a Minute Clinic or urgent care today, but she worked instead. She was going to leave early, but decided not to. Maybe tomorrow before she works at 1. I will be relieved when I finally do my Neupogen shot tomorrow eve. to raise my white blood count!
Thanks Ken for the info on the masks again. I'm not going to make Shonna wear a mask, but I do worry about surfaces she touches, even tho she is good about washing her hands. I wipe stuff down with disinfectant wipes.
Thank you to the Bridgewood folks for the 2 meals this week!! Much appreciated! Rich was just going to have cereal last night, but instead we all had yummy soup (and too much cake :)
Tomorrow I'll start a new blog--this one is getting too long. :)
Blessings!
Tina
Wednesday, October 7, 2009
Chemo Round 2 Of 8
Maybe I should say round 6 of 12? Because these 8 rounds are a continuation of the 4 I had in the spring--for a total of 12 rounds. But the side effects are more like a round 2 than a round 6. If that makes any sense :) .
My blood counts were a little low, but still within the range that my doc allows for chemo. We discussed doing the Neupogen shot to increase the white blood cells (specifically neutrophils), but since I can't take ibuprofen for the pain (because of my blood thinners), we decided to hold off until next round. By then I'll be done with the blood thinner shots (Lovenox), and will be able to take the ibuprofen before the shot.
I can stop taking the antibiotic for the c-diff, but the doc said he was going to double check with the infectious disease doc to see if I should stay on it longer at a lower dose. He said he was going to do that last time, so I hope he remembers this time! Because of the c-diff, I haven't been able to touch my grandson, so I'm hoping by the time he comes home in a month or so I'll be all clear to hold him!
I did get the flu shot today. It was for the seasonal flu, as they don't have the H1N1 shots yet. I asked the doc if the flu could kill me, and while he didn't say no, he did say that those with the blood cancers (like lymphoma) are more at risk because of their suppressed immune systems. While my counts get low, I still have a working immune system to help fight the flu. But it is weaker than a normal, healthy person. I asked him if they (the ones with blood cancers) are the ones I see wearing the masks, and he said yes, and I don't need a mask.
So, while I was sitting there getting my chemo, Shonna sends me a text that says "I called in sick to work--don't come near me or you will die". ( That's typical Shonna drama:) ) Turns out she has a really bad sore throat and headache. These are the same symptoms my oncology nurse, Cheryl, tells me her son had about 3 weeks ago and her doc thinks it was H1N1 and gave her son Tamiflu. Great. Shonna is staying away from me and in her room as much as possible, but we do share a bathroom. I think I'm going to put out a separate hand towel just for me. I'm going to try to get Shonna in to the doc tomorrow. If I tell them I have cancer, maybe they'll be willing to fit her in! Shonna said several kids in one of her college classes all got sick around the same time. She's been using hand sanitizer and washing alot, but really, this flu virus is airborne and hand washing might not help all that much (although its still recommended).
So far my side effects have been stronger than last round. I've been getting the hand, lip and calf cramping, and my throat is more affected by the cool air. I brought my new scarf with me, and I'm glad I did because I really needed it. I still have it around my shoulders so I can breathe into it every now and then to warm up my throat. I still get that weird pain in my jaw from my salivary (sp?) glands everytime I eat something. The first few bites really hurt, then it stops. I don't remember what the doc said about it, but its normal for this treatment.
Typing is getting difficult, and I have a headache, so time to stop.
Love to all!
Tina
My blood counts were a little low, but still within the range that my doc allows for chemo. We discussed doing the Neupogen shot to increase the white blood cells (specifically neutrophils), but since I can't take ibuprofen for the pain (because of my blood thinners), we decided to hold off until next round. By then I'll be done with the blood thinner shots (Lovenox), and will be able to take the ibuprofen before the shot.
I can stop taking the antibiotic for the c-diff, but the doc said he was going to double check with the infectious disease doc to see if I should stay on it longer at a lower dose. He said he was going to do that last time, so I hope he remembers this time! Because of the c-diff, I haven't been able to touch my grandson, so I'm hoping by the time he comes home in a month or so I'll be all clear to hold him!
I did get the flu shot today. It was for the seasonal flu, as they don't have the H1N1 shots yet. I asked the doc if the flu could kill me, and while he didn't say no, he did say that those with the blood cancers (like lymphoma) are more at risk because of their suppressed immune systems. While my counts get low, I still have a working immune system to help fight the flu. But it is weaker than a normal, healthy person. I asked him if they (the ones with blood cancers) are the ones I see wearing the masks, and he said yes, and I don't need a mask.
So, while I was sitting there getting my chemo, Shonna sends me a text that says "I called in sick to work--don't come near me or you will die". ( That's typical Shonna drama:) ) Turns out she has a really bad sore throat and headache. These are the same symptoms my oncology nurse, Cheryl, tells me her son had about 3 weeks ago and her doc thinks it was H1N1 and gave her son Tamiflu. Great. Shonna is staying away from me and in her room as much as possible, but we do share a bathroom. I think I'm going to put out a separate hand towel just for me. I'm going to try to get Shonna in to the doc tomorrow. If I tell them I have cancer, maybe they'll be willing to fit her in! Shonna said several kids in one of her college classes all got sick around the same time. She's been using hand sanitizer and washing alot, but really, this flu virus is airborne and hand washing might not help all that much (although its still recommended).
So far my side effects have been stronger than last round. I've been getting the hand, lip and calf cramping, and my throat is more affected by the cool air. I brought my new scarf with me, and I'm glad I did because I really needed it. I still have it around my shoulders so I can breathe into it every now and then to warm up my throat. I still get that weird pain in my jaw from my salivary (sp?) glands everytime I eat something. The first few bites really hurt, then it stops. I don't remember what the doc said about it, but its normal for this treatment.
Typing is getting difficult, and I have a headache, so time to stop.
Love to all!
Tina
Monday, August 10, 2009
More Changes in "The Plan"
My pain has gotten worse over the weekend, to the point where the pain pills barely help. So I didn't have radiation today, and when I saw my oncologist (Dr. J) he decided not to do the 5FU pushes(injections) I was supposed to have this week. The 5FU makes my body more sensitive to the radiation, which would be a bad thing for my body right now! He feels I've gotten enough radiation and 5FU previously, and I'll be getting more chemo soon, so its ok to skip it. We'll see what the radiation doc wants to do tomorrow, as I still have a lot of cramping and pain. Dr. J said the concern is that when the bowels get really inflamed the walls get weaker and then I am at risk for a perforated(sp?) bowel.
I have a date set for when I start my final 8 rounds of chemo--Wed., Sept. 2nd. I wanted it to be Wed. again, like before. I'll get chemo on Wed., come home with the 5FU pump, and have it removed by a nurse that comes to the house on Friday. I'll have a 3 week break before it starts--yay! As soon as I am feeling better, I plan on enjoying EVERY day!
Love and Blessings!!
Tina :-)
I have a date set for when I start my final 8 rounds of chemo--Wed., Sept. 2nd. I wanted it to be Wed. again, like before. I'll get chemo on Wed., come home with the 5FU pump, and have it removed by a nurse that comes to the house on Friday. I'll have a 3 week break before it starts--yay! As soon as I am feeling better, I plan on enjoying EVERY day!
Love and Blessings!!
Tina :-)
Monday, July 27, 2009
The New Plan
The new plan is to finish the radiation (12 more after today) which will end on Wed., Aug. 12th. The week of Aug. 10th I'll get an injection of 5FU each day, Monday-Friday. This is an alternate way to get the 5FU, and will work just as well. The Dr. was explaining to his "Fellow" (doc-in-training) how he's not worried about it affecting my blood counts because I responded so rapidly to the Neupagen shots (which raise my wbc). He told him all about how I was in so much pain within 2 hours of getting the shot, and how they hadn't seen that before--glad I could be of help in the "fellow's" training! That's me --the "oddball"! :-)
After radiation is done it sounds like they'll give me a 2 week break and then we'll start the rounds of chemo--every other week for 4 months--with the FOLFOX cocktail that I had before. This should work out perfectly for Rachel's baby shower the end of Aug. I am always amazed at how God is working in all this and making sure I'm not too sick for any family events. I can't wait to see how God works it out with Rachel's baby coming in Nov. By then I should be pretty sick, but I need to be able to hold my grandbaby as soon as I can! So, I'll trust God, and not worry about it!
I am feeling pretty good. I took my last pain pill this morning--don't need them anymore, as the intestines have calmed down. Still don't have much of an appetite. Pink Lemonade has been the drink of choice lately--I'm getting tired of plain water, but need to keep the fluids up. I need to get more protein, tho. That's a bit harder to do, as nothing tastes very good, especially meats. I also need to start taking more iron pills--my hemoglobin is still around 9.1. It never seems to go up much. My ankles are swollen, but the docs say it'll just take time to reabsorb all the fluids I got during my hospital stay, and the blood clot in my pelvic area is making the one ankle worse. I had to go to the hospital on Friday to get an ultrasound of my right leg because that ankle was really swollen, but the other one wasn't. Thought I was going to miss my birthday dinner! Dr. J. came out and said I must have missed him, and came all the way down just to see him. He's so nice, and funny. Aways happy and positive.
I feel good about getting on with my treatments. I need to keep fighting this. As sick as I get, at least I'm DOING something about it. I want to live a long life and see all my babies have babies of their own, and I hope I can find ways to help others going through this. Please pass on my blog address to anyone you know that has been recently diagnosed with cancer--often reading about what others have gone thru helps. I know it helped me, and the support of other bloggers continues to give me strength.
Love and blessings to all!
Tina
After radiation is done it sounds like they'll give me a 2 week break and then we'll start the rounds of chemo--every other week for 4 months--with the FOLFOX cocktail that I had before. This should work out perfectly for Rachel's baby shower the end of Aug. I am always amazed at how God is working in all this and making sure I'm not too sick for any family events. I can't wait to see how God works it out with Rachel's baby coming in Nov. By then I should be pretty sick, but I need to be able to hold my grandbaby as soon as I can! So, I'll trust God, and not worry about it!
I am feeling pretty good. I took my last pain pill this morning--don't need them anymore, as the intestines have calmed down. Still don't have much of an appetite. Pink Lemonade has been the drink of choice lately--I'm getting tired of plain water, but need to keep the fluids up. I need to get more protein, tho. That's a bit harder to do, as nothing tastes very good, especially meats. I also need to start taking more iron pills--my hemoglobin is still around 9.1. It never seems to go up much. My ankles are swollen, but the docs say it'll just take time to reabsorb all the fluids I got during my hospital stay, and the blood clot in my pelvic area is making the one ankle worse. I had to go to the hospital on Friday to get an ultrasound of my right leg because that ankle was really swollen, but the other one wasn't. Thought I was going to miss my birthday dinner! Dr. J. came out and said I must have missed him, and came all the way down just to see him. He's so nice, and funny. Aways happy and positive.
I feel good about getting on with my treatments. I need to keep fighting this. As sick as I get, at least I'm DOING something about it. I want to live a long life and see all my babies have babies of their own, and I hope I can find ways to help others going through this. Please pass on my blog address to anyone you know that has been recently diagnosed with cancer--often reading about what others have gone thru helps. I know it helped me, and the support of other bloggers continues to give me strength.
Love and blessings to all!
Tina
Monday, July 20, 2009
I'm Free For a Week!
Went to see Dr. Jahagirdar (Dr. "J", my oncologist) today and got labs done. The plan is to start the 5FU and radiation next Monday. My radiation therapist (Dr. Bisignani, or Dr. "B") is on vacation until Thursday, but Dr. J. will talk to him before next Monday and work out a plan for me. They might have me get injections of 5Fu instead of infusions (the pump). Apparently the pump is harder on the digestive system, and the injections are harder on the blood counts. I would get the injections for 5 days, then take a break. Dr. J. isn't too worried about my blood counts because I respond so quickly to the shots that raise them.
The pain meds are finally doing their job and controlling my pain. I have a long-acting med, and then a shorter-acting one for "break-through pain". Yes, I am taking it all! My bowels have settled down considerably, so the pain is much less (unless, of course, the doc is pressing on my tummy-ouch!).
Umm, I think that's all. I spent the afternoon paying bills and going thru mail--tomorrow it'll take me a few hours to get the checkbook in order! I'm glad I have a few moments to take care of these things. I'll have to run up (actually have Alyssa or someone drive me) to the library to get the next few books I need in the Mitford series, altho I can't read too long when I'm on pain meds--they make my eyes goofy--hard to focus.
I'm sure I've gotten some e-mails I haven't replied to--forgive me! Its hard to keep up when I've been "out of it" for so long (no comments!!)
Love you all!
Tina
The pain meds are finally doing their job and controlling my pain. I have a long-acting med, and then a shorter-acting one for "break-through pain". Yes, I am taking it all! My bowels have settled down considerably, so the pain is much less (unless, of course, the doc is pressing on my tummy-ouch!).
Umm, I think that's all. I spent the afternoon paying bills and going thru mail--tomorrow it'll take me a few hours to get the checkbook in order! I'm glad I have a few moments to take care of these things. I'll have to run up (actually have Alyssa or someone drive me) to the library to get the next few books I need in the Mitford series, altho I can't read too long when I'm on pain meds--they make my eyes goofy--hard to focus.
I'm sure I've gotten some e-mails I haven't replied to--forgive me! Its hard to keep up when I've been "out of it" for so long (no comments!!)
Love you all!
Tina
Sunday, July 19, 2009
Ahhh, Home....
I finally got to come home today. They've run all their tests and switched my pain meds around, and so now, basically, I can suffer just as well at home as in the hospital! I actually feel better now than I have all day, but I haven't been up too much yet either. Slept when I got home--the car ride was painful-- and am now sitting up in bed with the computer, some crackers, jello, and all my mail that I have to sort thru.
The docs think all this has been caused by the irritation to the bowels from both the 5Fu and radiation. I seem to be sensitive to the chemo drugs, which means I get the side effects worse. I think I've said before that I hope that also means the drugs are working better to kill the cancer!
I have no idea what the oncologist and radiation therapist have planned for me, but I know that they want me to continue with both treatments. I'll see the onc. for sure tomorrow, and hopefully the rad. doc too, so I don't have to make another trip down there to see him later in the week. All I know is they were going to give me a few days to rest my intestines before they attacked them again.
The colitis and uti should clear up with the antibiotics; the ct scan showed my lower bowel is very inflamed, which is why I have so much pain. I have shots to give myself for the blood clot. I may have to take shots or pills for the duration of chemo so I don't get another one. They are another side effect of chemo.
I hope everyone is praying for the families of the Nat'l Guard members that were killed a few days ago. The 3 that were killed were on Jaren's base, and in his MP unit. WAY to close!! Alyssa has been getting together with some other wives, and tonight they are at the prayer vigil in Stillwater.
Thank you all so much for the wonderful e-mails and comments!!
Love to all,
Tina
The docs think all this has been caused by the irritation to the bowels from both the 5Fu and radiation. I seem to be sensitive to the chemo drugs, which means I get the side effects worse. I think I've said before that I hope that also means the drugs are working better to kill the cancer!
I have no idea what the oncologist and radiation therapist have planned for me, but I know that they want me to continue with both treatments. I'll see the onc. for sure tomorrow, and hopefully the rad. doc too, so I don't have to make another trip down there to see him later in the week. All I know is they were going to give me a few days to rest my intestines before they attacked them again.
The colitis and uti should clear up with the antibiotics; the ct scan showed my lower bowel is very inflamed, which is why I have so much pain. I have shots to give myself for the blood clot. I may have to take shots or pills for the duration of chemo so I don't get another one. They are another side effect of chemo.
I hope everyone is praying for the families of the Nat'l Guard members that were killed a few days ago. The 3 that were killed were on Jaren's base, and in his MP unit. WAY to close!! Alyssa has been getting together with some other wives, and tonight they are at the prayer vigil in Stillwater.
Thank you all so much for the wonderful e-mails and comments!!
Love to all,
Tina
Thursday, July 16, 2009
A Quick Update From Tina
Hi All! Thanks so much for the thoughts and prayers!
I'm doing much better today, and will hopefully come home tomorrow.
I've had such severe cramping that the doc (the oncologist) thought maybe I had a serious infection in the bowels, or maybe even a perferated bowel. There is some bacteria in both the colon and bladder, so I am on 2 different antibiotics, but they haven't found the more serious infection they were looking for. I had x-rays done on Tues., and they showed some distention, but nothing more serious. They are also giving me an iv anti-diarrheal med.--and even that has taken a few days to finally slow things down. We were all beginning to wonder if anything was ever going to work! I'm getting Percoset every 4 hours for the pain, and now I've also been taking anti-nausea meds--thanks to all the other meds, I think! The antibiotics are ones that can cause an upset tummy.
So, finally, with all these drugs, things are finally starting to feel better--no more urgent runs to the bathroom!!
I got to eat regular meals at lunch and supper; my first 4 meals here were all the same, except the broth--red jello, orange sherbet, cranberry juice and apple juice. You'd think they could at least vary it a little!
Monday I will start radiation again, and the pump with 5FU. I thought they were going to take me off of it (5FU)completely, but they will just modify it somehow so I don't get as much. I'll find out more about that tomorrow. My radiation was supposed to be done on July 30th, but now it will be extended for 4 days, to make up for the ones I missed this week.
My oncologist mentioned again that I seem to be very sensitive to these chemo drugs. I just hope that means its working well and the cancer cells don't have a chance of surviving!
I'm going to go walk around a bit with Rich now--take care!!
Love, Tina
I'm doing much better today, and will hopefully come home tomorrow.
I've had such severe cramping that the doc (the oncologist) thought maybe I had a serious infection in the bowels, or maybe even a perferated bowel. There is some bacteria in both the colon and bladder, so I am on 2 different antibiotics, but they haven't found the more serious infection they were looking for. I had x-rays done on Tues., and they showed some distention, but nothing more serious. They are also giving me an iv anti-diarrheal med.--and even that has taken a few days to finally slow things down. We were all beginning to wonder if anything was ever going to work! I'm getting Percoset every 4 hours for the pain, and now I've also been taking anti-nausea meds--thanks to all the other meds, I think! The antibiotics are ones that can cause an upset tummy.
So, finally, with all these drugs, things are finally starting to feel better--no more urgent runs to the bathroom!!
I got to eat regular meals at lunch and supper; my first 4 meals here were all the same, except the broth--red jello, orange sherbet, cranberry juice and apple juice. You'd think they could at least vary it a little!
Monday I will start radiation again, and the pump with 5FU. I thought they were going to take me off of it (5FU)completely, but they will just modify it somehow so I don't get as much. I'll find out more about that tomorrow. My radiation was supposed to be done on July 30th, but now it will be extended for 4 days, to make up for the ones I missed this week.
My oncologist mentioned again that I seem to be very sensitive to these chemo drugs. I just hope that means its working well and the cancer cells don't have a chance of surviving!
I'm going to go walk around a bit with Rich now--take care!!
Love, Tina
Monday, June 29, 2009
Radiation Ain't too Bad
So far everything is going pretty well with radiation. I'm still getting used to the routine of going to the hospital everyday, it takes me about 20-25 minutes to get there, depending on traffic. I like that I have time to do things in the morning (I don't leave until 11 am), but my afternoons are useless. I eat lunch when I get home, then instead of working on projects(I've got a to-do list on the fridge) for at least a little while--I read, and sometimes even take a little nap! I'll have to work on structuring my time a little better. And I should probably find a little time in the morning for Bible study again, and some exercise would be good too. I guess my problem is that my time just seems so unstructured right now, and I feel like I'm wasting alot of it! Since I'm not feeling really sick, I should be doing more--but running to radiation everyday just messes things up. Oh well--I guess if that's all I've got to complain about, I must be doing pretty well, right??
Today(in addition to radiation) I had my port flushed, needle changed(that hurt!), and a new cartridge of 5FU put in my pump, plus labs done. My labs are ok, except for my hemoglobin, which went down to 9.5 (supposed to be 12-14). Its been below 11 most of the time since my surgery. The doc gave me iron pills, but I keep forgetting to take them. I don't know why it would go down. I didn't think chemo affected red blood cells--I'll have to go back and read all my info about chemo! That does add to the fatigue tho! I've been feeling yucky all day from that stupid saline flush of my port. I can taste it and the taste stays with me no matter what I eat--and just gives me a blah feeling. I held my nose for most of it (it really helps!), but not for all of it. My port was a little sluggish, so she had to keep flushing it until it cleared. I've also used an apple-cinnamon tea bag when I had my pump removed at home. You hold it to your nose and breathe it in and it really worked! Maybe I'll have to put some tea bags in a baggie and bring them on Mondays!
Other news--Rachel went in for an ultrasound on Friday morning and the baby is healthy and the right size. Very active too! The doc didn't like Rachel's blood sugars tho (they have been up, down, and all around!), so she put Rachel in the hospital for a few days so the endocrinologist (diabetes doc) can work on getting Rachel's numbers more stable. She was only supposed to be in for a few days, but event the experts are having a hard time getting her blood sugars under control! She says now she has proof its not just her! The endo thinks he's getting a handle on it, and she should be able to come home on Wed. She's bored silly! Ken spent the first few nights there with her, but tonight she's by herself. She has a word puzzle book, a jigsaw puzzle, books to read, plus a dvd player and dvds to keep her busy.
Alyssa and Jaren have been busy visiting friends, taking care of paperwork, and shopping! They have been staying at our house. Jaren leaves Wed. morning to go back to Iraq. It will be difficult for them, but they'll have lots of happy memories from this 2 weeks to help get them through the next 8 months! Keep them in your prayers!
North Heights Lutheran Church (our former church) will be having their annual Freedom Celebration on the 4th of July. Its a very patriotic service where they honor all service men and women. Vets are encouraged to wear their hats or uniforms. This year, at their Sat. eve. service, they will have a webstreamed, 2-way video between the church and the COB Basra, Iraq base, and the chaplain there, John Morris. That's the base where Jaren is! So we will definitely be going to that service! Maybe we'll be able to see Jaren! Altho I think it will be the middle of the night there. It'll be a good service anyway--it always brings a tear (or several)to my eye. I am SO grateful to ALL our servicemen and women! I just wish our country treated them better!
Shonna got a 32(out of 36!) on her ACT test. Hopefully that will help her get some scholarship money! She hasn't been home much since school's been out--tons of grad parties, fun times with friends, and work--whenever someone needs a day off, she gladly takes it for the extra money! Now she has a cold tho, so I hope she slows down the next few days.
So that's my update for now! Please keep all my little ones in your prayers, and Rich too, as work has been very stressful.
Take care everyone!!
Love,
Tina
Today(in addition to radiation) I had my port flushed, needle changed(that hurt!), and a new cartridge of 5FU put in my pump, plus labs done. My labs are ok, except for my hemoglobin, which went down to 9.5 (supposed to be 12-14). Its been below 11 most of the time since my surgery. The doc gave me iron pills, but I keep forgetting to take them. I don't know why it would go down. I didn't think chemo affected red blood cells--I'll have to go back and read all my info about chemo! That does add to the fatigue tho! I've been feeling yucky all day from that stupid saline flush of my port. I can taste it and the taste stays with me no matter what I eat--and just gives me a blah feeling. I held my nose for most of it (it really helps!), but not for all of it. My port was a little sluggish, so she had to keep flushing it until it cleared. I've also used an apple-cinnamon tea bag when I had my pump removed at home. You hold it to your nose and breathe it in and it really worked! Maybe I'll have to put some tea bags in a baggie and bring them on Mondays!
Other news--Rachel went in for an ultrasound on Friday morning and the baby is healthy and the right size. Very active too! The doc didn't like Rachel's blood sugars tho (they have been up, down, and all around!), so she put Rachel in the hospital for a few days so the endocrinologist (diabetes doc) can work on getting Rachel's numbers more stable. She was only supposed to be in for a few days, but event the experts are having a hard time getting her blood sugars under control! She says now she has proof its not just her! The endo thinks he's getting a handle on it, and she should be able to come home on Wed. She's bored silly! Ken spent the first few nights there with her, but tonight she's by herself. She has a word puzzle book, a jigsaw puzzle, books to read, plus a dvd player and dvds to keep her busy.
Alyssa and Jaren have been busy visiting friends, taking care of paperwork, and shopping! They have been staying at our house. Jaren leaves Wed. morning to go back to Iraq. It will be difficult for them, but they'll have lots of happy memories from this 2 weeks to help get them through the next 8 months! Keep them in your prayers!
North Heights Lutheran Church (our former church) will be having their annual Freedom Celebration on the 4th of July. Its a very patriotic service where they honor all service men and women. Vets are encouraged to wear their hats or uniforms. This year, at their Sat. eve. service, they will have a webstreamed, 2-way video between the church and the COB Basra, Iraq base, and the chaplain there, John Morris. That's the base where Jaren is! So we will definitely be going to that service! Maybe we'll be able to see Jaren! Altho I think it will be the middle of the night there. It'll be a good service anyway--it always brings a tear (or several)to my eye. I am SO grateful to ALL our servicemen and women! I just wish our country treated them better!
Shonna got a 32(out of 36!) on her ACT test. Hopefully that will help her get some scholarship money! She hasn't been home much since school's been out--tons of grad parties, fun times with friends, and work--whenever someone needs a day off, she gladly takes it for the extra money! Now she has a cold tho, so I hope she slows down the next few days.
So that's my update for now! Please keep all my little ones in your prayers, and Rich too, as work has been very stressful.
Take care everyone!!
Love,
Tina
Wednesday, June 24, 2009
Only 15 Minutes!
So today was my 3rd radiation treatment (only 25 to go!). Yesterday took a little longer because they had to attach some wires and get a reading of how much radiation I was getting for their physicist. Sort of a quality control check, I think. Then I had to see the radiation doc (Dr. B). I'll see him every Tuesday. I knew I'd be seeing him occasionally, but couldn't remember how often. He just went over with me, again, some of the side effects, and what to do about them.
The main side effect is diarrhea, and skin irritation in that area. I'm not sure what I'm going to do, because the med. for diarrhea also affects my bladder. I still have some bladder problems; it never came back all the way after surgery, but the problems are minor. Dr. B said he'd rather I have bladder problems then the diarrhea, because I could lose too much fluids and electrolytes. When the problem starts, I think I'll call the urologist I saw after surgery and see what he thinks. In the meantime, I'm eating a low fiber diet, and trying to think of all the "binding" foods I can! The hard part will be not eating all the wonderful fruits of summer. But I'm very happy to be able to have cold stuff for most of the summer!
Today, I parked near the door at 11:18, and was back in the car by 11:33! When its just radiation, and no doc or other tests, its really fast! I'm learning how to position myself better so it's not quite as uncomfortable.
I did have a little nausea the first afternoon. I ate a little supper, then gave up and went to lay down and read for awhile. I also took a Compazine pill to help. I felt fine a little while later. I was a little queasy yesterday afternoon too, but was out shopping with Shonna, and it went away on its own. Today--so far so good! Most people don't have any nausea with this 5FU drug, but I've read about some that had bad reactions to it, so you never know!
Other than that--the pump is annoying, but overall this is a lot better than chemo! Everytime I'm laying on the table for radiation I remember that God is there with me, and I relax, and it goes just fine!
Take care everyone!
Tina
The main side effect is diarrhea, and skin irritation in that area. I'm not sure what I'm going to do, because the med. for diarrhea also affects my bladder. I still have some bladder problems; it never came back all the way after surgery, but the problems are minor. Dr. B said he'd rather I have bladder problems then the diarrhea, because I could lose too much fluids and electrolytes. When the problem starts, I think I'll call the urologist I saw after surgery and see what he thinks. In the meantime, I'm eating a low fiber diet, and trying to think of all the "binding" foods I can! The hard part will be not eating all the wonderful fruits of summer. But I'm very happy to be able to have cold stuff for most of the summer!
Today, I parked near the door at 11:18, and was back in the car by 11:33! When its just radiation, and no doc or other tests, its really fast! I'm learning how to position myself better so it's not quite as uncomfortable.
I did have a little nausea the first afternoon. I ate a little supper, then gave up and went to lay down and read for awhile. I also took a Compazine pill to help. I felt fine a little while later. I was a little queasy yesterday afternoon too, but was out shopping with Shonna, and it went away on its own. Today--so far so good! Most people don't have any nausea with this 5FU drug, but I've read about some that had bad reactions to it, so you never know!
Other than that--the pump is annoying, but overall this is a lot better than chemo! Everytime I'm laying on the table for radiation I remember that God is there with me, and I relax, and it goes just fine!
Take care everyone!
Tina
Monday, June 22, 2009
1st Radiation Treatment
I had my first radiation treatment today! We sure got our exercise walking back and forth between radiation therapy and the cancer care center! We park by radiation because we got a card to swipe to get into their parking lot, and its free! Then we walked to the cancer center to get labs done and see the oncologist. Then back to R.T. to get my radiation. Then back to the cancer center to get my pump hooked up. I forgot my pump at home (all I was thinking about was radiation!), but they found a spare one I can use until next Monday. Then, of course, back to R.T. (after stopping at the cafeteria to eat lunch!), because that is where we are parked!
Today, during radiation, they took x-rays first, so it was a little longer than normal. I have to lay on my stomach, with my face on a hard donut pillow, and my arms up above my head. Its very uncomfortable, because I can't breathe very well (I hate breathing in my own breath--I need fresh air!), circulation gets cut off in my arms, and I get red marks on my face from the "pillow". Oh, and the pillow presses on my port too. I'll try to position myself better tomorrow. I have 27 more treatments to figure out how to be more comfortable! I have to be very still, but I don't feel a thing. Since the other treatments will be quicker, it really won't be that bad.
Every Monday I will go to the cancer care center after radiation to get a new cartridge in my pump, and my needle in my port changed. Other than that the radiation itself should be pretty quick.
I found out today that I won't start chemo rounds again until 3-4 weeks after radiation is done(July 30th). They'll give me a little time to recoup. So I figure it'll be late Nov. to early Dec. before I'm done. All I care about is being able to go to the hospital when Rachel has her baby in Nov. Even if its just a quick visit to hold the baby. I can hardly wait!
I went to Rich's work today to get him to drive me to my first appointment. He likes to be there when I see the doctor, and I wanted him to figure out the parking lot for me! He'll go with me when he can, but I can drive myself when I have to. I'm just glad he could go with me today, I was pretty nervous! So thanks, Rich's work, for letting him leave! I know he had a meeting he was supposed to go to, but some things are just more important than work. I couldn't do this without him!
Well, that's about it! All in all, not too bad. :-)
Take care everyone!
Tina
Today, during radiation, they took x-rays first, so it was a little longer than normal. I have to lay on my stomach, with my face on a hard donut pillow, and my arms up above my head. Its very uncomfortable, because I can't breathe very well (I hate breathing in my own breath--I need fresh air!), circulation gets cut off in my arms, and I get red marks on my face from the "pillow". Oh, and the pillow presses on my port too. I'll try to position myself better tomorrow. I have 27 more treatments to figure out how to be more comfortable! I have to be very still, but I don't feel a thing. Since the other treatments will be quicker, it really won't be that bad.
Every Monday I will go to the cancer care center after radiation to get a new cartridge in my pump, and my needle in my port changed. Other than that the radiation itself should be pretty quick.
I found out today that I won't start chemo rounds again until 3-4 weeks after radiation is done(July 30th). They'll give me a little time to recoup. So I figure it'll be late Nov. to early Dec. before I'm done. All I care about is being able to go to the hospital when Rachel has her baby in Nov. Even if its just a quick visit to hold the baby. I can hardly wait!
I went to Rich's work today to get him to drive me to my first appointment. He likes to be there when I see the doctor, and I wanted him to figure out the parking lot for me! He'll go with me when he can, but I can drive myself when I have to. I'm just glad he could go with me today, I was pretty nervous! So thanks, Rich's work, for letting him leave! I know he had a meeting he was supposed to go to, but some things are just more important than work. I couldn't do this without him!
Well, that's about it! All in all, not too bad. :-)
Take care everyone!
Tina
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