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    Hodgkin disease, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Hodgkin disease, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    5 Answers from the Community

    5 answers
    • valpack13's Avatar

      I battled Hodgkin's twice. I was 26 when I was diagnosed with it at stage 4. What kept me going was the support of family and friends and planning my wedding. Yes, I planned my wedding while going through all of my ABVD chemo treatments. It was the best threapy for me because it kept me focused on something very happy. I wasn't going to let cancer get in the way of me getting married.

      When I had my re-occurance a year and a half later, I found that it was better for me to put on emotional blinders. I was going to be having an autologus stem cell transplant and needed to focus on getting to that transplant. I couldn't focus on the "why me" until I was in the hosptial room for my transplant. At that point, I just let everything out. I cried everyday. I had the support of my parents, sister and husband. I did my best to keep eating, even though the food had no taste. I also pushed myself to walk a little bit each day, when I could finally leave my hospital room. But, I also knew I needed to rest in order to have my body heal.

      One thing that I wish was available to me during this time was a young adult cancer support group. I found that being a young adult with cancer was an isolating experience. I was the youngest in the cancer care center that I went to. It would have been nice to be able to talk with people around my age going through cancer treatments.

      From a practical standpoint, I learned that sweatpants and sports bras are one's best friend when having PET or CT scans done. You can leave your clothes on because there is no metal.

      over 5 years ago
    • GGP's Avatar

      I found that not getting into the "why me" phase and tackling the cancer head on helped me. I asked my dr.s what was next, then just said OK let's go get it. Each procedure, each surgery or treatment was counted off and I considered each to get me one step closer to the goal.

      Stay positive and look to the future when you will be done and can get on with your life.

      over 5 years ago
    • bp440's Avatar

      When my husband was first diagnosed, we were fortunate enough to know our surgeon (personal friend) and she referred us to the medial oncologist she thought would be the best to handle the care and treatment of his Hodgkins and she was right in her selection. I had recently retired from the healthcare system and had been over all the diagnostic imaging services so that made scheduling testing and getting results very easy (and very fortunate as others don't have this luxury)

      Our medical oncologist told us from the beginning that he would be the primary doctor for all things during the course of treatment and would have my husband follow up with his appropriate PCP and cardiologist. He said he would also provide me with any treatment or support if needed. Since both of us have medical backgrounds and came prepared with questions and a diary of how things were going, the information exchange was great with each visit. The downside was that since we seemed to have it together, support services were not discussed and the hospital's affiliation with this website had not been advertised.

      Early on, I realized that my husband (had the emotional blinders on ) and was dependent upon me to keep a record of everything. I kept reading about his therapy, his current medications and watched closely for side effects. There were more than I ever anticipated, which is why I started his journal.

      Since he became septic early in the treatment, he was very weak and slept most days. He gave up driving a car and I took over every aspect of our life for 7 months.
      My goal for him was to be able to rest and heal. Since we are alone, it was easy to keep a quiet household. Being alone presented other challenges as we had to learn to ask and accept help as our family is long distant.

      I hit the wall about 3 months into his treatment, which surprised me as I am usually very strong. Watching what he went through with his sepsis (and the fact that I almost lost him) and seeing what the chemotherapy was doing to his mind and body was very hard to watch. It was also very isolating as my partner was living with me, but absent from our life. I missed him so much.
      A friend of mine strongly recommended that I get into a support group, but leaving my husband alone was difficult due to his weakened condition. Another friend knew of this website and this became my lifeline.

      I soon came to realize that I had to take care of my needs and took my brother in law's offer to stay with my husband one weekend so I could visit with my family. It was just what I needed to recharge.

      Friends fixed meals on chemo days, what a nice way to come home from a long day of chemotherapy.
      Our family and friends sent cards throughout his entire treatment. It made my husband realize how much he was loved. Friends and family had him on numerous prayer lists. There were so many random acts of kindness that I can't list them all, but it's what made the dark days a little brighter.

      The news of his remission was freeing, but there were lingering side effects to deal with. He has made great progress and is enjoying life again.

      In a few months he'll have his annual scans. My mind is never really at peace with this disease, but we have both decided to live each day without regrets.

      over 5 years ago
    • AlizaMLS's Avatar

      Hi. I'm Aliza. I'm a Breast Cancer patient. I'm also a Medical Librarian (retired) who does research and referrals for folks on this site and others. Besides being a BC patient, I'm also a Lupus patient (was diagnosed about 20 years ago). I've got a lot going on...;) (I wish I was more boring medically)

      I was diagnosed with BC last August 2012 in a routine mammography ordered by my og/gyn. I have fibrocystic breasts. When the results came out to be a bit "unusual", and I received a letter to that effect, I thought "ok, I must have a cyst that needs to be aspirated" (it had happened once before [about 6 years earlier {my mother accompanied me for this-she had also been fibrocystic-unfortunately she died in August 2011 of a Cerebral Hemorrhage}]). I got a second letter from the lab saying my results were "abnormal". I then became frightened and called my ob/gyn-it was her holiday, but I have her on-call number and in my estimation, it was an emergency, so she told me she'd be back in the office in a few days.

      I had to go back to the lab where I'd had my mammography and had to have a biopsy taken and a clip put in my breast. I was told it looked like I had Stage I BC

      About 4 days later she called me (I was in the car with my faince) to give me the not so good news that I had cancer. I was strangely calm, except my feet felt numb. I didn't cry or sound emotional. She told me to go to the hospital where she's affiliated (a good one too) to their Breast Center (the head doc used to be at Sloan Kettering).

      I saw and had an interview with the surgeon at this hospital. She was very nice and seemed very knowledgeable and competent. I wanted to see a few more people before making up my mind.

      My fiance who is a wonderful guy was and is very supportive of me. He was with me from the moment I was diagnosed to the present where I'm still recuperating. He made lists and kept the times of appointments because I couldn't be bothered with those kinds of details.

      My daughter, who was 25 at the time I was diagnosed wanted to come on the next wave of surgeon interviews. I thought this was an excellent idea, While I'm a Med Librarian and the ex-wife of a Physician, my daughter is a Paramedic and is in Nursing School earning her RN/BSN. She's Chief Medical Officer on her Ambulance and a phlebotemist and EKG tech as well. So she accompanied me and my fiance.

      The 2nd surgeon was a fellow who was not specifically a Breast Surgeon, but a General Surgeon. I was not overly impressed. Without trying to offend anyone because of geographic location, I live in NYC, it would be have been unwise for me to have chosen someone who was not specifically a Breast surgeon with all of the great hospitals in the Metro area here. So it was on with the search.

      My older brother (by 8 years) cheered me on from the sidelines. We've had a rough 3 1/2 years - during that time, we lost both our parents, and I had surgery in the Spring of 2010 on my right foot because I had a tumor that they suspected was a rare form of bone cancer (called PVNS) so I had to see an Orthopedic Oncologist (it turned out to be benign) but it was found when I went to get casted for a badly sprained ankle and the Orthopedist who found it turned pale and referred me up to Einstein Medical Center. For a month before my surgery I cried myself to sleep at night. My Dad had just died from CLL and I was worried about how my Mom, my daughter and my brother were going to cope if I had this bone cancer. I didn't so back to the almost present...

      My Rabbi (whose wife has Hodgkin's disease) and my Veterinarian (whose wife had BC) are and were both treated at Memorial Sloan Kettering Cancer Center in NYC, and were urging me to go there, so that's where I was headed but first I called and they told me to go on their website and look for a Breast surgeon. That's the first step with them as far as BC is concerned because your Surgeon is the head of your medical team. She/he coordinates all of your other docs (and even chooses them [you can slect others in their stead if you wish {and I did in a number of cases}]). They have a background summary for each doctor with a photo and also a video clip of them explaining their philosophy on how they perceive treatment. That's how I chose the surgeon I wanted to see. When I felt comfortable going ahead, she made appointments for me to see a radiation oncologist (I was uncertain in the beginning if I wanted to have a lumpectomy or a mastectomy, but ultimately decided on a mastectomy).

      My breast surgeon told me I didn't have any cancer in my lymph nodes, so that was good to hear. I actually recall waking up from the anesthesia and asking for my fiance.

      They do "instantaneous reconstruction" at Sloan meaning they start the process of reconstructin so that if you have a mastectomy which is what I chose (since I have Lupus, I was more at risk of having the radiation set off a Lupus flare [Lupus patients are supposed to avoid the sun {I wear sunblock under my makeup}]), you don't wake up entirely flat. It's somewhat comforting.

      Coming home was great. I loved being home and seeing my cat whom I missed and being with my fiance (he's a wonderful cook). I think my cat realized something was up because she wouldn't leave my side.

      I really like my plastic surgeon-a very nice man. It's good because I had two post op infections (cellulitis) after my mastectomy and I was under his care (I can tell you that Sloan Kettering has first rate food!...;) and I managed to get the flu when I was in for my 2nd hospitalization on IV antibiotics. They gave me Tamiflu - it's excellent. Cut the severity of symptoms and the duration of the illness in half. They had to put me into isolation. Everyone who came into my room, doctors, nurses, my fiance, daughter, brother, etc. had to glove and gown and mask. I was allowed and encouraged to take walks on the floor but then I had to glove and gown and mask.

      When I was in during my 2nd hospitalization, I found out that they had done "Oncotype" genetic testing on the tumor they removed. I scored very low which is good because it's a projection into the future (10 years down the line) of a chance for recurrence. I have the same chance as the average person on the street. So, my surgeon, and later my oncologist (whom I chose [again after the original one she selected for me seemed a bit too inexperienced for my liking]) both concurred that I did not need chemotherapy, that it would not benefit me.

      I am HER2-, ER+, PR+. So my oncologist whom I like very much after a discussion has placed me on Tamoxifen. (I'm 54 years old and going through perimenopause)-not quite there yet. After my visit with her I went to see my Primary care doc to ask her to put me (back on) Plavix to prevent blood clots (I'd had a t.i.a.) when I was about 41 due to my Lupus (my blood was clotting strangely at the time), but for some reason they took me off. I'm having a lot of hot flashes from the Tamoxifen and sometimes feel a bit "hormonal" but other than that I don't feel bad from it.

      I feel very blessed as far as Cancer is concerned because this month is month 4 of being Cancer free. Newly diagnosed and people without cancer don't understand that this isn't the same as being "in remission." That's being cancer free for 5 years. But right now this is a great blessing!

      I am still exhausted-a mastectomy, 2 bouts of cellulitis, the flu and Lupus will do that to someone, so it's not as if I feel great. I tire easily. I had lots of energy in the summer and a great figure for a woman my age-I looked about 13 years younger than I am. Now I need to lose 30 lbs.

      I think it might have been great if I could have been thinking a bit more clearly so that I could have recalled that CancerCare existed (I got counseling from them when my Dad was ill with CLL, but I didn't think of phoning them until recently to get counseling). Like I said, I wasn't emotional, but that doesn't mean I wasn't foggy either!! It's important to have some clear headed folks with you especially to take along on doctor visits (if those folks have medical or allied health backgrounds more the better).

      "The Mayo Clinic Breast Cancer Book" is one of the greatest resources I can recommend to someone who's newly diagnosed in terms of what to seek re medical information and agencies.

      Re family - I've got the world's best fiance (the Cancer interrupted our Wedding plans - we've yet to reschedule [I have to lose weight before I finish my reconstruction] and of course the dress I chose (and bought) is strapless, so we're thinking about whether we want the same type of Wedding we originally did or whether one day we'll just sneak out and visit my Rabbi...;) (this is a 2nd marriage for both of us, so I'm sure people will understand).

      I love WhatNext-it's wonderful to be able to help other people who have Cancer. I have great compassion for anyone with this illness because it's claimed so many lives of the people I've loved - my Dad, my Grandfather, Great Aunts and Uncles and my cousin. Still it's also an opportunity to learn about different medical issues which allows me to be able to help more people as well.

      One thing I can tell every woman on this site who's not a Breast Cancer patient, whether they're a caregiver or suffer from a different kind of cancer is don't skip that yearly mammo, it literally can save your life!

      Thanks for the opportunity to tell my story!

      over 5 years ago
    • GregP_WN's Avatar

      For me, what helped me to get through it and come out of the experience being a survivor, was just telling myself from the beginning that while the whole experience sucked, I wasn't going to let it get the best of me, that I was going to be the one that decided how it turned out. Keeping a positive mental attitude is very important to keep your attitude and energy up. Without both, you are losing ground to the cancer thats trying to kill you.

      The help and support of my wife of (now) 33 years was huge. Without her I couldn't have done it, literally. I could not get back home from treatments without getting sick, violently sick. So I could not have driven myself.

      There are many more small things, but the biggest thing that I can give myself, that no one else has control over, is my own mental attitude towards the situation. I am in control of that!

      over 5 years ago

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