I had not been feeling just right and after a series of quick exams decided to change physicians. The first physical with the new doc was to be a two part affair. I returned to my office after the first half to see my message light blinking. It was my new doctor and he wanted to see right away. He would wait until I could get back no matter the time. This visit lead to a referral to an oncologist he already set up while waiting for me to return for the next day. At the end of day two I was told I had stage 4B Hodgkins. I was told to go home tell my family, contact my lawyer to get my affairs in order and contact my minister and plan my funeral. Then he looked me square in the eye and said, then I want to admit you to hospital tomorrow at __a.m. for some more tests, drain your lung and start curing the cancer. This was the beginning of 18 months of chemo followed by a month of radiation.
I had ridden to the first assessment appointment. At one point early on in treatment my oncologist told me to stop riding. My immune system was nonexistent and road rash was a greater risk to me than the cancer. I told him I had already sold the bike as part of ?getting my affairs in order.? Hmmm was his response as he made a note in his papers.
Roughly two years later we were talking about test results as part of my remission follow up. The results were good. He was pleased with the stamina I was showing as I recovered from the side effects of radiation. As the exam ended he began writing and telling me; ?This is not a prescription but it is your doctors advice at this point.? He put it in an envelope and handed it to me. I read it in the car during the drive home. The note read: Find your helmet and buy a motorcycle.
This was twenty two years ago. My medical record since then is a disaster. I rarely get sick in the normal way of colds or flu, instead opting for two more bouts of different forms of cancer and a quadruple bypass. Part of my recovery plan made up with my doctor in all of them was a return to riding and other activities I enjoy at the appropriate time. Life is the treatment. Chemo, radiation, recovery and riding are events in that treatment.
I wish many more riding events for you in the future of your life. Good luck.
Thanks for your post.
Interesting about your "first" doctor - I had not been feeling right and the last two visits had gone with lists of things that just weren't right. He brushed them aside. It was like my body was pushing different buttons trying to get my attention. Good thing I didn't listen to him! I now have a new primary.
[COLOR="#0000FF"]"The note read: Find your helmet and buy a motorcycle."[/COLOR] How great is that?? Riding is good treatment!!
I have been working on my stamina using a pedometer to track steps and have gone from around 2,000 steps (roughly 1 mile) a day (during chemo weeks it was usually less than 1,000) to more than 7,000 every day for the last 4 days (even topped 8 yesterday!). I'm exhausted at the end of the day, but determined. I WILL soon be back on the bike - I've got some surgery next week so it will be a little longer, but not much! :)
It sounds like when you do something, you really go all out. Sorry to hear you've had such medical issues. My husband had an emergency triple by-pass, so I have an idea of what you went thru with that. Thank you for your encouragement - it means a great deal to me!
Great idea -- perhaps if I ride daily, I won't need to do the manual lymphatic drainage "massage"? :)
Do you wear compression garments when you ride? I've got a sleeve and custom glove, which fortunately I don't have to wear every day now. Usually I'm good with kinesio taping and recently don't need to do MLD every day.
I'm sorry to hear your cancer came back. How did you find out? Some of my cancer buddies haven't felt like their aftercare plans included enough screening for a return.
It's great to hear from you!
In a previous post, I believe I mentioned there is actually HAIR growing on my head! It gets even better!!! I have progressed from peach fuzz to CARTOON HAIR!! -- what's there is very sparse and tends to stand out from my head. And it's long enough that I can actually grasp it!! I'm loving it.:groovy
Also on the good news front: Sigmoidoscopy and colonoscopy were clear; pelvic ultrasound was clear*, electromyography test (electrical stimulation of muscles to check for nerve damage) showed only minor damage to one nerve in each leg so we're hopeful the neuropathy will continue to fade, and I (!) mowed the lawn yesterday! OK, so it was a zero turn mower and so it wasn't really much work... but it sure felt good!
* the medical oncologist at one of my last visits asked when I was having my hysterectomy. This was completely out of the blue - we had discussed in December because of an extensive family history of cancer, but I'm negative for the BRCA 1/2 gene and NO relatives had ovarian cancer despite lots of breast cancer. So this was a real blow to me - another 6+ weeks for recuperation after surgery - another 6+ weeks off work -aaarrrrrrrrggggghhhh! I was REALLY angry, which is quite out of the ordinary for me. Went to the gynological oncologist and he said "what are you doing here??? the risk from surgery is greater than the risk of ovarian cancer!" Oncologist had been on vacation and I think he did not review my chart before the appointment and confused me with someone else. Doesn't do much for my trust in him... :(
Next week: CT scan, Bone scan, Bone density test, outpatient surgery to remove chemo port (it's been problematic), remove implant ports, and what I'm calling "touch-up" surgery on reconstruction. The plan is to go BACK TO WORK the week of July 22, starting part time and working up each week to more hours. Wooo hooo!
Post treatment question
1. Did any of you get a "Summary of Treatment/Care Plan Summary" explaining your diagnosis, treatments received, dosages, etc. after you completed treatment?
2. What about a "Followup Plan"? This would discuss what tests to get when/who to follow up with, risk of recurrence, health issues to expect, what symptoms should result in a doctor visit, etc.
I've asked for both, not sure what I'm going to get. My oncologist hadn't volunteered this information, but when I asked, said he'd "put it in a letter".
Nice hearing your good news, Paula. Keep it up.
I didn't get those documents, but the doc who took the lead in post-chemo treatment (the ENT who did the surgery) talked about those things with me a lot. I didn't feel the need to get it in writing.
Update - PROGRESS!!
Now we're cooking with gas, folks!
It's been a while since my last post. I'm happy to report that things are improving - in some areas slowly, in others by leaps and bounds.
MOST IMPORTANT: I'm back on the bike! Last Saturday, my husband helped roll the bike out and point me in the right direction and I rode all of.... about 1.5 miles. I've lost so much strength that I was afraid to go further -- and, I was concerned about my lymphedema and what would happen. All was good. This morning, I took Sharona for a spin the back way to the local library - about 30 minutes round trip. It was a gorgeous morning, 68 degrees, twisty road and very light traffic. The squirrels, however, were out and were busy breakfasting on smashed nuts on the roadway. It seemed like every corner I turned I found 4-5 squirrels in the road. No problems! I was slow, they were fast, it was a beautiful thing! Still a bit shaky control-wise, but Sharona is light and nimble and just being on the bike was a joy.
Next in importance (read: checks are coming in!): I'm back to work. Just over 25 hours this week - this after starting at 10 hours four weeks ago. I'm SO glad to have started back part time and I'm thankful my employer has been so understanding. My goal this week is to go in at 7:30 and stay till 2:30, perhaps 3:00. Follow-up doctor's appointments have cut into my work hours, but it's all about building up my stamina at this point.
As I've started to work more hours, I've missed my afternoon naps. Consequently, bedtime has come earlier -- typically about 7pm. People tell me I sound tired - but hey, at this point, I'm always tired I say. Talk to me again in another week and I'll STILL be tired, BUT, I will have accomplished MORE.
Onward and upward!
Keep on looking up at the Sunny Side Good Job!
30 whole hours at work this week. Everyone says they can see an obvious difference since when I started back over a month ago.
I would SO like to be riding to work, but am so tired in the afternoon that I'm afraid too. One day last week, my husband dropped me off and picked me up -- a good thing since that day I over did it was and it was all I could do not to break down in tears on the way home.
One of the things I'm learning is my limits. Once upon a time, I woke up bright eyed and bushy tailed and ATTACKED the day. These days, it's a bit more of a slow start (ha ha ha ha ha!) and instead of going from one thing to the next, I consciously say "OK, I need to build in a break/sit down for a while."
But I'm not complaining!!
I keep thinking about how to give back and how to get in touch with the riding community to share information. If anyone knows about how to set up a website - like free type sites, that would be helpful. I'm also looking into how to conduct online polls (surveys) so that others can share tips, tricks, strategies and experiences. I have NO idea how to do this stuff...although I do have experience with technical writing, and writing survey questions....
Tomorrow -- another ride, a bit farther this time... :) :) :)
Thanks to all of you for your continued support!!
[COLOR="#FF0000"]Good for you!
And thanks for sharing what you've learned. As you found, there's not a whole lot out here to help.
Have you tried WordPress? Pretty easy to use and FREE! And Survey Monkey might be what you're looking for.
I'll check out Word Press. And I'm familiar with Survey Monkey, so that may be an option too. I'm also looking at PollEverywhere for "live" surveys, but since the free version can only take 40 responses per question, if I go that route, I'll need to have sponsorship.
Got out for a short ride this morning about 7am. We have a nice curvy road to the library and it seems that now that I can concentrate for longer periods, I always have a book to drop in the bin. After I threw in a couple of for-fun detours on the way home, my total ride was about 45 minutes. It was a good ride and I did well, but I noticed when I pulled into our subdivision I was physically and mentally tired.
Early bedtimes are still the norm, and that's ok. :)
Laurie - lymphedema
[QUOTE=115915;886656] My lymphedema actually improves when I ride as long as it is not too hot. I think the arm position helps in addition to doing the exercises.
OK, I've been on all of THREE rides. The first was about 10 minutes (max!), the second was a week later and lasted about 30 minutes. Sunday morning was my 3rd ride, which lasted about 45 minutes. On the first two, there was no measurable difference in the circumference of my left arm/hand/fingers. HOWEVER, after the last ride, the swelling in my left fingers/hand/wrist/forearm were LESS and hour after riding than just before. My upper arm measured GREATER. None of these measurements was astronomical, but they were different enough to warrant attention. Hmmmmmm... high frequency vibrataion? If I ride longer will the upper arm diminish? Sounds like a good excuse for another ride. :)
[COLOR="#FF0000"]LOVE the way you think!
I have lymphedema under my chin. Two - three hours with my helmet on and it's mostly gone. Riding is now a medical procedure. In early May riding was difficult; have 12,000 miles since then. Hang in there, it will improve.
Confirmation from my lymphedema therapist that vibration CAN be beneficial. She cited some other examples and said "studies have shown that gentle vibration/bouncing to your body does help activate the lymphatic system. So, I could see how the vibrations from a motorcycle could help do the same thing" - and there you have the official word - RIDING IS THERAPY!
Of course she was a LITTLE unhappy to hear that I've been so tired trying to get back to full time at work that I have skipped some of my exercises on some days... :)
Gotta love it.