We're so proud that Madeleine and Gail were recognized by The Olympian for their tireless work to provide nutritious, comforting food for patients undergoing chemotherapy.
You can read their story on The Olympian's website >>
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Cancer, or cancer treatments, can cause damage to the lymphatic system. Cancer itself can get in the way of fluid draining out of the extremity. The treatments for cancer, particularly surgery and radiation, can damage lymphatic vessels and lymph nodes. While lymphatic vessels will grow again given time and a good healing environment, lymph nodes are not able to regrow.
Chemotherapy does not cause lymphedema, but can contribute to the swelling as it causes some water retention throughout the whole body. I would like to stress that while the treatments for cancer can cause lymphedema, those treatments were chosen to increase your chances of survival. Lymphedema is not a life-threatening disease, but cancer is. Those providing your cancer treatments have and/or will provide it in such a way to reduce your chance of getting lymphedema and still maximize your chance of survival.
Lymphedema can affect people soon after surgery and/or radiation, or 20 years down the road. With surgery, it is expected that people will have swelling as part of post-surgical healing. It is a good rule of thumb to wait until 3 months after surgery before deciding if swelling is truly lymphedema or is just post-surgical swelling. However, it is never too early to learn what you can do to prevent lymphedema.
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It was another scary day. It started this morning with a feeling of foreboding; the knowledge that this afternoon we (my husband, Jim, and I) would see the urologist to get the results of last week biopsy.
I’m glad I spent the morning volunteering in the Infusion Center. Ironic isn’t it? Here I dread the afternoon’s appointment, but happily spend all morning with brave strong people battling cancer. They’re wonderful. I really do get much more than I could ever give from them including their prayers. Yes. One or two noticed I was a “little off.” I asked them for their prayers explaining why.
One o’clock pm and Jim arrives. We drive to the urologist’s office and learn there is a cancerous mass and surgery is necessary. We tentatively schedule that for December 28th. Tomorrow we’ll meet with the oncologist, after the Tumor Board meeting. We can then put together the game plan. Of course, much will be determined after the surgery and the extent of the cancer “invasion” is known.
I stand on my soapbox crying out encouragingly, “It’s called LIVING with cancer!” And this is what it’s like. You take each day as it comes. You deal with what you can handle at the time and embrace all the wonderful resources available – especially the people who know, who care, and who support.
Jim is one of those people. He’s amazing. He’s certainly not eagerly anticipating this next hurdle, but he faces it with an attitude of “Let’s get in and get it done.” He makes this much easier for me. I hope I do the same for him.
Fatigue is a common problem and also one of the most distressing symptoms associated with cancer and its treatment, yet it has been consistently under-reported. Many patients believe that feeling weak, tired or exhausted is a necessary evil when your body is fighting cancer. Cancer-related fatigue profoundly affects the quality of life of patients and their families through physical, psychosocial, and economic/occupational aspects.
The most important factors contributing to cancer-related fatigue are:
Anemia is the most common reversible cause of cancer-related fatigue, particularly among patients receiving chemotherapy. Treatment includes red blood cell (RBC) transfusion, or using erythropoietin stimulating agent such as procrit.
Pain: Pain in cancer patients is also considered under-reported. If you are in pain talk with your doctor, it could be contributing to your cancer-related fatigue.
Lack of exercise: To avoid fatigue, cancer patients often are advised to rest and down-regulate their daily activities. However, because inactivity can induce muscular wasting, prolonged rest can lead to further loss of physical strength and endurance. Although you may not think so, physical exercise training programs can increase your functional capacity, leading to reduced effort in performing usual activities and a decreased sense of fatigue. Again, talk with your doctor to develop a program that is right for you.
Emotional distress and sleep disturbance: Sleep disturbance associated with fatigue is often difficult to treat and manage. It may be influenced by numerous factors including daytime naps, depression, anxiety, medication, sleep interruption because of nocturia or hot flashes, and evening food and/or beverage intake. Cognitive-behavioral therapy and stress reduction may help insomnia and sleep disorders.
Poor nutrition: One of the most common side effects of cancer is a change or loss of appetite which results in fatigue. However, your body has never needed proper nutrition more. It may be helpful to keep a journal of what you are eating. When you speak with your doctor next you can go through it together and make sure your diet is providing your body with all the essential nutrients it needs.
Medication:Psychostimulants (methylphenidate, dexmethylphenidate, or modafinil) and antidepressants may be useful if the above methods do not improve fatigue.
If you are suffering from cancer-related fatigue don’t just assume that being exhausted “goes with the territory.” Talk with your doctor to develop a plan and get you functioning at your best level.
It’s a scary thing when you’re told your husband has cancer. Jim had just had a cystoscopy to check for bladder cancer. He had it done under sedation. The doctor came out into the waiting room and called me aside. His words, "It’s cancer.” My words, “What do we do now?” And the roller coaster ride began. Jim was scheduled for surgery and had the requisite tests done, including donating his own blood for the surgery. We were just a couple of days away from surgery when the urologist asked if we had seen an oncologist. We were dumfounded. No one had mentioned it and we certainly hadn’t even thought of it. When you find out you have cancer you just want to get it fixed as fast as possible. Surgery was cancelled. We saw an oncologist. Jim opted for chemotherapy before surgery hoping the chemo would rid him of the cancer tumors and removal of his bladder and prostate wouldn’t be necessary.
My point in telling this scenario is “we” – cancer patients and caregivers – don’t know what questions to ask when we get the diagnosis. We just want to address this terrifying disease immediately. Take time and ask the questions. Make an appointment with the oncologist, ask any questions you can think of. If you think they’re stupid, ask them anyway. And if the doctor thinks they’re stupid questions, get a different doctor. You have that right.
Jim’s bladder cancer eventually resulted in surgery and the removal of his bladder and prostate. He has a urostomy. As his caregiver I was taught how to care for his ostomy. Scared! You bet I was! I’m not a queasy type person so that didn’t bother me, but , oh my gosh, I didn’t want to hurt him and how would I know if anything was wrong? Again! Ask questions. Call the ostomy nurse, call the infusion center, call the doctor on call. You have every right to make those calls and don’t feel stupid!
Fast forward a couple of years, Jim has a recurrence of cancer. Cells are in a lymph node and there are abnormal cells in his urethra. He begins chemotherapy again. The second time around we’re a little more aware of what we need to do. I need to keep Jim as strong as possible with good nutrition, addressing side effects from the chemo and always being vigilant about infection. Jim and I have gone through this together. We’ve gone to doctor appointments together, (two sets of ears are better than one), we’ve spent hours together at the infusion center, playing Blokus, reading and, for Jim, sleeping. We take each day as it comes, addressing what needs to be done that day. And each day is a celebration as long as we are together.
Providence Regional Cancer System