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the good and the bad

yesyes2
Posts: 592
Joined: Jul 2009

Hi All,

Haven't been on here in some time now. So here goes what has been happening. It is long so please bear with me.

As I had mentioned in prior posts my energy level never did come back after my RCHOP chemo finished in February of this year. I think it finally bottomed out when we returned from our anniversary trip in September. I had been experiencing repeat upper respitory infections for several months and now it has become a cronic condition which has me very concerned. My PCP doesn't know if it is an allergy or something else as it is no longer responding to antibiotics. My CT scan in July was clean but it's now Nov so who knows. My onc had me do sinus xrays which were clean. I need to get a chest x ray and see a lung specialist to find out what is going on but I have been putting that off as I'm really scared to see him. I know it's silly, I've had cancer 4 times but this is really something I don't want to deal with, and my cough is getting worse.

Lifes complications and health issues made me some what depressed and I pretty much stayed very low profile in Oct. I just didn't want to deal with anything or anyone. End of Oct my DH and I went out of town to celebrate my B'day. Had a wonderful time in Cambria and Morro Bay and returned home very much refreshed.

The last month or so my RA has been really acting up so I have been having lots of pain and stiffness. Really bad for me to be typing on my PC too. I'm trying not to take any pain meds but don't know if that's the right thing to do. Saw my RA doctor last week and if need be will beg him to give me 2 rounds of Rituxan, my treatment for the RA and my cancer. He needs to speak with my onc and figure out how to treat me as he's concerned because of all the rituxan I've had in the past.

I'm scheduled to see my hemo specialist at UCSF a week from Monday as he is concerned about my fatigue etc, and my onc here is scheduling my December CT scan, always scary, as I'm fearful that I'm out of remission. I'm having the same stomach issues I had with my last recurrance, swelling of belly, trouble with digestions, etc. I've had so many scans I think I now glow in the dark. And I do worry about a secondary cancer because of all the radiation and chemicals I've had. My Onc is concerned about this also.

A week ago Friday my beloved brother in law died. He had fought long and hard, 7 years with esophagial(sp)cancer and we loved him dearly. We did not expect him to die when he did and so it came as a surprise. He suffered for many many years and he is now at peace, and out of pain. My sister is devestated and is needing lots and lots of love and support. They did not have children and I am her only family and we live 75 miles apart. It's very sad and emotionally devestating.

Finally a week ago today a very wonderful women from another lymphoma board died from her NHL. She was always there to give love and encouragement to all who were living with this awful disease. She had lived with it for 9 years, this time being treated for a very aggressive recurrance, both disease and treatment, but we didn't think she would die. These 2 deaths so close together really shock my world. Just so very sad for so many people who loved and admired Sharon.

Sorry this is so long, been a long time since posting. Thanks all who took the time to read this.

Blessings and love to all,
Leslie
Blessings to all of us on this journey.

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Leslie,
You have so much going on, I really do understand. I can only hope and pray that your cough can be resolved soon. That, added to chronic fatigue and RA is too much.
I am so sorry to hear about your dear brother in law. It is always so hard to lose a loved one. We also lost a special neighbor to esophogeal ca that same week. Hugs to you..
Peaceful healing
Lisha

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Leslie,
It always seems like when it rains it pours. To be honest I never knew there was another lymphoma board except for one called "Blue Rose". Thats how I found this one. Then again I never looked for another board either. What type of NHL did Sharon have? It is sad about your brother in law as well. Just do not have the right words in times like these. Then you having those problems with the coughing is certainly scary I know. Hopefully it is something they can diagnose and treat quickly. When you are surrounded by all the bad news that you have been thru lately it makes your mind really go wacky. I finished my last treatment the last of September and I am not back to 100% either. My body doesn't feel tired, but my eyes feel tired all the time. I got some eye drops that Sue recommended and they help a lot. I know we are all different in the way we respond to the Chemo,but you said you finished last Feb. so you are going to have to find out why you are so tired and worn out. You said you feel bloated all the time. Do you have any pain? I don't want to keep asking you stuff because you said it is rough with your RA having to type. I know that is rough in itself. Just want to say welcome back and please keep us informed. John (FNHL-1-4A-5/10) REMISSION

yesyes2
Posts: 592
Joined: Jul 2009

Thanks Lisha for your kind words. And sad for your neighbhor and his family. Esophogeal cancer is really on the increase and is a very bad cancer to have. you take care.
blessings to you and your family,
Leslie

yesyes2
Posts: 592
Joined: Jul 2009

Hi John, Thanks for your kind words. I too seem to have a problem finding the right words. But your caring and concern come through and thats what matters. And I thank you for that.

Any problems with lungs scare me to death as both my mom and my other sister died from lung cancers. And I just do not want any more chronic conditions.

My NHL started with the same type of stomack problems I'm now having so there is reason for concern. The CT scan in December will show if I'm out of remission. Don't have pain, just get sick and swell when I eat anything. If I don't eat it's much better but not eating isn't a solution, LOL.

There are several other active NHL boards. The one I was referring to is LLS Cancer Board, Leukemia and Lymphoma Society. Sharon first had DLBC, than diagnosed with fNHL which finally transformed from fnhl to a more agressive form. Very scary.

John, I'm glad the eye drops Sue told you about are working. I too have very dry eyes and mouth. I had this before the chemo but the chemo has made it much worse. I haven't found anything that really works for me and will have to try the one you are using. As far as for my mouth the best thing is chewing sugarless gum. The dry mouth also is contributing to this dang cough.

Take care my friend, I'm going to go rest my fingers, ouch!

Blessings,
Leslie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Leslie,
I am sorry, I should have said the name of the drops. They are called "SOOTHE". They sell it at Walmart for about $11. They will last about 3 months and are in little packets. They are made by Bausch & lomb. Make sure you get the one with no preservatives. Made a difference for me. I tried so many others and they never did anything ,but only take the red out. John (FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Leslie,
Got home from Church and saw you had posted and was so happy. However it made me sad to read everything you have been going through. I echo John's comment.."when it rains it pours"! I'm sure the thought of a recurrence with your cancer is weighing heavy on your mind...I know it is always in the back of my mind since I've been told recurrence is inevitable with FNHL. Scary thought indeed. I will keep you in my prayers, as I do everyone, and keep positive thoughts for your up-coming scan in Dec.
God bless you Leslie....Love,Sue (FNHL-2-3A-6/10)
P.S. The eye drops are called Soothe...in a blue box and it says perservative free on the front of the box.

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Leslie,

Really am glad to hear from you, although, am sorry to hear of the difficulties of what you are dealing with. I too experience stomach pains and dry throat and mouth more each time I get chemo. I hope you will find a way to get better with this and all the other situations. I find that whatever happens - a little goes a long way. I will be thinking of you with big hopes.

Hugs,
Liz

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hey Leslie, so sorry for your loss, try to stay as positive as possble, it's so hard! I know how all that "what if's" come creeping back in the thought process. Your are in my prayers................ Vinny

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