sharimay
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Well I don’t have much of an off week this week. Since I was so busy last week with my dad’s funeral I wasn’t able to have my hemoglobin checked when I started feeling tired and short of breath. So yesterday I had my hemoglobin checked and of course I was low at 8.9 and my platelets were 43. So here I sit getting 2 units of blood this week. I am looking forward to feeling better after the blood. I finally feel caught up on my sleep and rest after last week. Oh to feel normal again. My only wish is that I feel back to 100 percent by my birthday in July. I turn 30 and want to be able to celebrate properly. I am hoping that my platelets bounce back next week so I don’t have any delays with chemo. Till next week . . . .
ShariHi everybody,
Thank you for your kind words and prayers. I had my second dose of my cycle 6 today and am feeling good. I am going to get fluids and my neulasta shot tomorrow and then head back home (90 minutes away) and spend the rest of the week with my family. I was able to be there and take care of my dad (he was placed on hospice last wednesday) and then able to come back to where I live and have chemo and get things in order and then head back. I am very grateful he passed and I didn’t have to leave him and come back for chemo. Being a nurse I have helped many families say goodbye to their loved ones and have to say that my dad had the most peaceful passing I have ever been a part of. He was a wonderful man and he got what he wanted, to die at his home surrounded by his family. 11 of 14 of us kids were there with him on sunday and were able to say goodbye. I know he now will be able to be there with me during my final chemo cycles and give me the strength to finish them out.
“other” Nancy – I also noticed that with cycle 5 my emotions were in high gear, but I had a really good cry and have to say that now my emotions are back to where they had been, even with my dad’s passing.
Marion – thank you for the e-mail and your kind words. It really does mean the world to me.
I want to share with you a poem I have heard and think it sums it up best.
ShariGod saw you getting tired
and a cure was not to be
so he put his arms around you
and whispered,
“Come to Me”With tearful eyes we watched you
and saw you pass away
and although we love you dearly
we could not make you stay.A Golden heart stopped beating
hard working hands at rest.
God broke our hearts to prove to us
He only takes the bestLily,
I have had blood transfused on 3 different occasions with no side effects. Once during surgery and twice while doing chemo, and I think I will probably get more before I am done. I have 2 cycles of chemo left. The one thing is that I now have an antibody in my blood, which means that it takes a little longer to type and cross me for my transfusion, but I feel no side effects and it also can happen during pregnancy so it is not only the blood transfusions that can cause the antibody. During the transfusions I feel fine and after I feel like a million bucks because a low hemoglobin makes me very tired and short of breath when I walk and chest pains when I walk when it is really low. They also premedicate me with tylenol to help with any possible side effects.
I have had CT scans, an MRI scan and a PET scan. They are all useful tools to monitor tumors and their status. Each scan has its positives and they are all good tools. For me they will continue to monitor me with CT scans at this point in time. The MRI scan can help define tumors better if they aren’t well defined on a CT scan. It is somewhat on doctor preference and a good discussion to have with your doctor so they can give you the positives and negatives on either scan and why they are using the type of scan they are.
As far as tumor markers go you need to kinda take them with a grain of salt. For me mine was elevated before surgery and back to nothing after they removed my entire tumor, over half my liver and my gallbladder. So each case is a little different with the tumor markers.
I hope that this helps a little.
ShariHi all,
It has been a long journey thus far, and an even longer weekend. I have spent the weekend at my dad’s bedside saying goodbye. He has been sick for some time and made his final journey home this morning. He was born and died on the family farm. I have my second dose of my 6th cycle tomorrow and will spend the day resting and preparing for the week to come. I am glad he is looking down on me and he will be there to help me through my final cycles of chemo.
ShariKathy, I have seen parts of her documentary on lifetime before I was diagnosed and I think I will have to make a point of watching it. I have a very hard time reading at chemo. It seems to be too loud and distracting and with all of the fluid I get and the mannitol they give my with my Cisplatin I am up to the bathroom a lot. Movies have seem to be the best thing to do to occupy my time.
I feel so much more emotionally stable last week and this week so far. I think I figured out what it is I need in life to make my heart feel better. A good cry, good sex and a good drunk. In that order. After that it seems that life is so much easier to deal with.
I sure can tell that I am getting further into my treatments. I feel much more tired today and I usually do after my day 1 treatment. I know the chemo is compounding and each cycle knocks me down a little more than the last one. At this point in my chemo if I have made it this far the last 2 cycles have nothing on me. On another good note I think spring is finally gonna come and give us some nice weather. Soon camping season will be upon us and I will have some fun in the sun with my family.
Till next time,
ShariHi all,
I am starting my 6th cycle of chemo today. Lab work looks good and my hemoglobin is in the 11’s after my blood. I had a wonderful week off from chemo and have been feeling great. I wasn’t emotional last week and I think I just really needed a good cry. I had a PET scan last week to recheck the spots on my lung and they didn’t look suspicious. They will continue to watch it with my follow-up CT scans. Now if we could only get a break from this cold weather and all of this snow and it would start to feel like spring.
ShariKathy,
I find that interesting about refraining from sex for 48 hours post chemo. I have never directly asked that question, but have never been told that. I guess you learn something new everyday.
ShariRitche,
Other than a transfusion of platelets there isn’t much to be done about the low counts. Since you have a little time off from the chemo that will help your body build them back up on their own. The Gemzar can cause the flu-like symptoms. I am currently on gemzar/cisplatin and my platelets have been okay, but my hemoglobin has been low and that is when I feel the most fatigued. I have gotten blood a few times to help with the low hemoglobin.
There are many different medications they can give your for the nausea if you aren’t getting relief from the kytril and decadron. I am taking emend and zofran along with decadron and I don’t get much nausea.
Chemo is compounding as is with the radiation, but a little break may help you feel better. I have done fairly well on my chemo regimen and have been able to work throughout and carry on mostly as normal.
I hope this helps and good luck with your treatments.
ShariHi Val,
I agree. I would have your doc check them out. Even if they are nothing, but for piece of mind it would be worth it. You are right about the lymph nodes being under the arm.
ShariThanks Lainy, Nancy, and Marion,
I have just had a really emotional week. I cry at the drop of a hat for no real good reason. Anything just makes me want to cry. I physically feel pretty good this week, especially after getting blood. I have a good friend that has been a great shoulder to cry on, and think I might be feeling a little better. I know that a week off from chemo will help. This funk of mine will pass and I will be back to my usual self. I will just have to imagine myself on a beach somewhere enjoying a margarita
ShariLainy,
I think what you are doing is an awesome thing. There are not very many people who have the courage to bring forth change. There will be many families that will benefit from your courage. Keep up the good work and can’t wait to keep hearing updates.
ShariHi,
This week I finished my 5th cycle of chemo and had a crappy few days. I don’t know if it is the weather of if I finally hit a wall and needed a few days of poor me and a good cry, but I now feel up to writing about how I am feeling. I am feeling okay, but my hemoglobin is down again and I am starting to feel very short of breath and crappy when I exert myself. So here I sit getting ready to get 2 units of blood.
It is hard to explain all of the feelings that I have had the past few days, and even harder to explain why I feel bad for having these feelings. I have been fortunate in that chemo hasn’t been that hard on me. I am able to work almost full time, only taking off my chemo days and when I need blood. I don’t have many side effects from the chemo and am able to feel just about normal day to day. For me keeping my normal routine had been my greatest coping mechanism. I have given up certain things during the past few months of chemo. I no longer go to the gym as it really gets to be a bit too much. I also have gained a little weight, thanks to the no gym and steroids.
I know that I am harder on myself than most anybody expects me to be, but we are our worst critics aren’t we. My attitude has been back to normal now, and I think I just needed a few days of a bad attitude.
I’m sure I am not the only one who has had these feelings, and it is very hard to accurately voice what I am feeling. I am not blessed with the ability to find the right words to explain how I feel.
I want to thank everybody on this website for listening to me ramble. This website has been a great source of encouragement for me.
I am looking forward to have a good week off from chemo, getting some rest and recharging before starting cycle 6.
ShariTomlee,
I have had CT’s, MRI’s and and due to have a pet scan in a week or so. I had a CT scan in ND prior to surgery and an MRI at Mayo. After surgery I had a CT scan at Mayo and a follow up CT scan in ND. I am currently doing gem/cis and just finished my 5th of 8 cycles. I don’t know if there is a “right” answer to your question. Sometimes the tumors can be too small to show up on a PET scan. I have some very small “spots” show up in my lung on my last CT scan, so that I why they recommended a PET, even though they are not sure they are big enough to be seen on a PET, but since I have never had a PET scan it will serve as a baseline scan for me. With my previous CT and MRI scans they didn’t get enough of my lung field to have a comparison scan to see if the spots in my lung were there before. So in a nutshell, it probably would be beneficial to speak with your doctor and go over the risks and benefits of the different scans and decide what is best for you. It is true that an MRI will give a more defined picture of your body and it will pick up things both a CT and PET scan will miss. Remember that you have a right to ask as many questions as you want and be comfortable with your plan of care. I hope my ramblings help and good luck.
ShariJoolz,
Sorry to hear that the gem/cis combo didn’t work. Hopefully you can regain some strength before starting anything else. I share your not freaking out mode. It doesn’t do any good does it. Thinking of you.
ShariLainy – I am 29 and don’t have any scans to compare them. I won’t sweat it until I know if there is something to worry about. If I can’t control it, its in Gods hands, and he will take care of it and me.
Marions – we got a teaser of a few days of 40 degree weather, but its gonna cool down to the teans in a few days. I will take it, it warms the heart and gives us some hope of spring and summer.
Shari
