mary colleen

Sonya, Welcome. Please let us know how you are doing. We all care. MC

Don, I have a friend whose fingertips dry out and ulcerate severely due to scleroderma. He swears by the moisturizer Aquaphor to keep it from happening. It's OTC at the drugstore. As for your sagging body and eyelids, I don't think I can help you:)

Pup, First of all, let me congratulate you sincerely on the good checkup. I understand the disability issue. We went through much of the same ordeal. Our situation was different - my husband has lost his job because his loss of vision (brain tumor), loss of physical ability, and inability to learn a new job in the aftermath of WBR led his long-time employer to decide that they "no longer had a role for him." He had exceeded his FMLA leave, so they were able to do this. He was terribly hurt. We had private disability payments that were adequate, but I felt strongly that we had to get the clock ticking toward Medicare eligibilty, so simply had to apply. The system is designed in such a way that the sometimes lengthy wait for approvals, and the 2 year delay to Medicare benefits almost forces many people with an illness like this to apply for benefits before they are otherwise ready. I felt that we had no choice if we wanted/needed the safety net of Medicare eligibility down the road. Though my fervent hope was that my husband would recover and work again, I was very worried about how I would cover all of his s health insurance and financial needs if something happened to me. I finally understood "health care reform" talk to be more than rhetoric. Ok, enough of my rambling. One thing I can think of for you: find out how much you would be able to earn without compromising your SSDI. Once you know that, perhaps you could work it out with your employer to cut back to that amount of pay/hours once you are receiving disability. That way you could still work, and also have that safety net set up. I don't know what it is (have been meaning to find out), but there is an allowable amount of income that you can earn without losing or reducing benefits. I'm sorry this was so long. I'm very happy that you had a good checkup, and I hope the suggestion I made is in some way useful to you. Hugs, MC

Wow. I'm so sorry. Wish I could help those kids, and I'm so grateful that you are so kind and concerned with them. Life is hard.

Andrea, I'll join the chorus here: my daughter was actually hospitalized in infancy for tests due to being below the chart metrics. I was pretty traumatized, because I felt as though I was somehow not caring for her properly. There was no real reason identified, and today she is a very busy and healthy college junior, both taller and larger than me. Sounds like Jacob is probably doing well developmentally, and he sure looks great (and beautiful) in his photo. I know these things are hard, but try to keep the faith and know that so many of these issues turn out to be false alarms. Mary

Corrine, just from a humanitarian standpoint, I hate to see you wait that long and would urge you to bug that GP to push it along. The waiting is too hard on you. Be tough - it's a hard road, but it CAN be walked and it is not - repeat not - a "death sentence". Mary Colleen

No way! I'm on a diet and am famished when I wake up in the morning, so always eat breakfast. I PREDICT THE NEXT PERSON HAS A FOOD ALLERGY.

Aaron, thank you for posting. We've all wanted to hear from you. How very hard this has to be. Remember that most of what you are describing is treatment related, and that you CAN recover from those things. Know that we are all here thinking of you daily and sending prayers all over the place for you. Keep up your courage - you've got it. Mary Colleen

Teri, "I felt like I wasn't grieving properly, even though I didn't really know what that meant." You didn't know what that meant, yet are defining it as you go, documenting it, and leaving a trail for others that will be followed. You are awesome. You're brave and purposeful, even as you feel you are muddling through blindly. Love, MC

Cori, Welcome, I'm glad you're here. You aren't alone in this. Keep us posted. Mary Colleen

Well, since we're all thinking of them a lot, I'll dedicate my prayers over the next day to Aaron and Julia.

Me too. They have been on my mind.

My husband had WBR, basically the same thing as PCI, in June '07. The fatigue hit him very hard as well. He became repulsed by food, lost 15 pounds in 3 weeks, and stopped all activity due to fatigue. Long story short, he was suffering from the side effects of brain radiation. These side effects lasted for about 4 months after the end of WBR. He even had another big drop in performance after seeming to partially recover. Hope this helps. MC

Thank you!

Have Aaron (spicysashimi) or Julia (Babyspicy)posted recently? They are on my mind recently and I wondered if I had missed a post. Thanks

Carrie, I would call her oncologist ASAP to be safe, even though it is a holiday. My husband permanently lost a good portion of his vision to a brain tumor, at least partly because I did not insist that he have some transient symptoms checked immediately. I know that the MRI was clean, but something did happen, and I would get it checked immediately. MC

My husband had WBR in June - essentially the same thing as PCI. 6 months post the last treatment, and he is much better, but still struggling in some ways. It is not instant coffee to recover from - I would suggest that you expect several more months of dips and improvements, based on our experience. Rest (as much as needed) is critical to letting the brain recover. Good luck. MC

Bucky - I think you know that fear is rearing its ugly head and trying to get the upper hand. Do not allow it. You get onto planning that party! My 50 year old bones hurt, too and I do not have LC. Be strong! MC

Barb dear - You have had an incredibly short time to process from diagnosis until now - it has gone very fast for you. Of course you are teary and nauseous - you're reeling, and appropriately so. I wish you much comfort and peace. You did a great job with the hand you were dealt. God Bless. MC

Guillermo, Welcome. I agree with Ry that you should get over to Onctalk and correspond with Dr. West. For what it's worth, my husband had most of his right lung removed (2B, T2, N1) and has very little pulmonary difficulty. Please keep us posted. Mary Colleen

Teri - It is a very brave and necessary thing to examine your feelings and loss like this. I know that it hurts, too. I know that Bill is gently watching you as you negotiate this new landscape. I'll bet he's very proud of you. Big, big hug - MC

Bunny, I logged into Onctalk to see if I could find the response for you, but couldn't find your post. Did you use the same screen name as here? Since Dr. West always seems to respond quickly, I am wondering if your post didn't go through. As of 12/13 he has a message up about mailing errors someone was getting and provided an alternate address: West@cancergrace.org. I think he is the best person to answer your question, so I'd love to see you get it to him. I'd try again. Mary

1A!! Congratulations!!

Randy, you're a good guy. I understand the blues. I think that what you are doing on Sunday is a great honor to Deb, and a wonderful way to deal with those blues. MC

I agree with everything the others are telling you, including Dr. West being a very reassuring and competent source of information. The very best chance for a cure is complete surgical removal. They are probably assessing it to be 1A based on imaging. If the mass appears to be within certain size parameters, in specific locations, and they are seeing no lymph node or other involvement, you are being given a "clinical staging" based on those findings. After surgery, you will be given a "Pathological staging" which is often (but not always) the same. They will also be able to determine the cell type (such as adenocarcinoma or squamous cell carcinoma.) Aside from any other medical factors, surgically removed Stage 1A is not really considered to need chemo. I hope that, if cancerous, this is stage 1A - there is a very high cure rate in that stage. Best of luck - keep us posted.