# Health Update No. 3



## heruide (Feb 12, 2008)

​I haven’t posted for awhile and that was due to me having a very difficult winter. A number of my web camping friends have been checking on me and I thought I should explain why I was not as active on the various camping fora. 

You may recall that I’ve had two stem cell transplants - first in December 07 when they used my own stem cells and then in November 08 this time it was from a donor. The cancer (lymphoma) kept coming back. So in September 09, my doctor at MD Anderson decided to infuse some of my donor white blood cells. 






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I’ve gone through chemotherapy, radiation, and two stem cell transplants with no problems – (i.e. I would typical walk 5 miles most days while I was in the hospital). 







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The September infusion was also fine with no side effects. However, by October I started having temperature spikes twice per day. I ended up in the San Francisco St. Francis’ hospital ER and they confirmed it wasn’t an infection. The temperature spikes continued and occurred three times per day. So it was back to MD Anderson where I ended up in the ER. They repeated the same series of tests and X-rays. After a couple days in the hospital they concluded that I had “tumor fever”. 

The scans confirmed that the lymph nodes were impacted (i.e. the cancer had raised it ugly head again). So I signed up for a clinical trial and went through two treatments However, when they did another scan they found out my lymph modes were shrinking (i.e. my donor white blood cells and stem cells were working). So I was off the clinical trial. However, the biggest fear was now the “Graft versus Host” GVH disease and low and behold it raised its ugly head.

Between the GVH and the drugs to control it – I ended up with all sort of problems. I lost my taste as well as my appetite and started to loose weight. I lost over 50 pounds - mainly muscle mass as I didn’t have much fat to loose. I also fell down several times while walking and even fainted in a store – the store called the EMT and you guess right – I ended up in the ER again. I lobbied for the new Health Reform bill to give points for Frequent Staying Nights in the ER but that did not happen! 

The doctors at MD Anderson thought that I would do better if I spent the holidays at home. So I came back to Cincinnati but I ended up staying in bed all the time. When I saw my family doctor I was in such bad shape she immediately called for an ambulance and I was off to the ER and then ICU for 10 days. 


Some of the problems I encountered over the holidays were:
1. Dehydration followed by water retention
2. Heart arrhythmia and increased pulse (150 per minute)
3. Diabetes
4. Cytomegalovirus (CMV)
5. Pneumonia
6. Severe Dry Cough
7. Low blood pressure
8. Hallucination (one night only as a result of one of the drugs) 
9. Temporary degrading of my eye sight
10. Diarrhea and nausea 
11. Dry skin, flaking and darkening of most of my skin
12. Lost the lining of the top of my mouth
13. Nights sweats and chills
14. Neuropathy of my hands and feet
15. Painful stomach cramps after eating ​The good news is that most of these issues have been addressed or are gone. I graduated from physical therapy where I literally learned to walk again… I started with a walker but now I only use a beautiful cane. I’m fully graphed by my donor stem cells and even have her blood type.

I’ve only come through all of this because of the loving care of my wife and daughters. Although it was painful for my wife to see me deteriorate she has proven without a doubt that she would stand by me through thick and thin.

I’m now working on gaining back my weight – it is surprising how easy it was for me to loose muscle mass and now it is so hard to gain it back. I’m back at work full time and can drive myself to work. And the best news of all – is that I’ve had two scans that either showed most lymph with no impact with a few that were reducing in size or no impacted lymph nodes. My doctor says I’m in remission but I’ll wait for a year to really celebrate my cure.

I’m looking forward to completing a number of mods on my folding trailer and to get back to camping after Mother’s day. For those of you that checked on me and/or had me in your thoughts and prayers, I appreciate all you have done and I thank you very much.

Ruide


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## grcooperjr (Feb 4, 2009)

Hi Ruide.....

Boy, I don't know what to say, other than Patty and I have you and your family in our thoughts. I'm sorry you had a rough winter and GLAD your rebounding.

Now to the important/fun stuff.... CAMPING. Ya need to get out and take a well deserved BREAK. It sure helped me a bunch last year after the long hospital stays. Sure wish you could make it to Ft Stevens in June for the PUP Rally. It should be a fun time at the Beach.

We are looking forward to your next rounds of mods on the E3 and again..... Your in our thoughts.... GET WELL SOON.

Ray & Patty


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## happiestcamper (Mar 6, 2008)

Ruide, hang tough. Think about you often.


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## heruide (Feb 12, 2008)

Ray and Patty,

Thanks for the good advice. I've been criticized by my DW for working on Mods while we are camping. During the last trip I replaced the water pump with a Whisper King and accumulator. Then I replaced the thermostat with a digital one.

This past weekend would have been great to go camping but my DW has put a prohibition on camping until after Mother's day. I can't argue with that since we almost froze to death on a camping trip that was in mid April - our anniversary!

However, I'm getting out into the woods. I ended up hiking five miles yesterday around a lake that is in one of our city parks. The bad news was every one was passing me.... but I had my cane so hopefully they understood my limitations.

Thanks again and yes I really wish I could be at your PUP rally. Please give me best wishes to all the forum members that may attend.

Take care.

Ruide


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## heruide (Feb 12, 2008)

Happiest camper,

Thanks for keeping me in your thoughts. My journey has caused me to have a different attitude toward life. I really try to live my life day by day, be thankful for all I've received, don't let the little things bother me... and I do stop to smell both the roses as well as the manure :whistling:

Thanks again and take care.

Ruide


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## shannon (Aug 11, 2008)

Hi Ruide, I'm so sorry to here of your set back in your illness. I had been following your journey through the Portal. I sure hope this was the last time you have to go through this. My youngest daughter (16 years old) has just recently been diagnosed with Hodgkin Lymphona and is finishing up with her second round of chemo. It's been quite a rollercoaster ride of emotions. We caught it really early and so far is only supposed to need 3 rounds of chemo and 10 days of radiation afterwords. It's only been 4 weeks since it all started, but in a way feels like a life time. Like you, she is a trooper and is very positive, she isn't even afraid to visit her high school sporting her newly balded head. Our thoughts and prayers are with you and your familiy. Take good care, Shannon (yogi)


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## heruide (Feb 12, 2008)

Shanon,

Thanks for your words of support. I also will keep you and your daughter in my thoughts and prayers.

I share your roller coaster ride as I lost my twin sister to Leukemia when we were 18. I also had a hard time seeing all the kids that were suffering from cancer at MD Anderson. I've have been given 5 very good years for the most part since I was first diagnosed and can accept what ever is in store for me. However, I must confess I struggle when I see kids that are going through this fight. However, like your daughter they seem to be so strong that we adults have a lot to learn from them.

Please tell your daughter that she has one fellow camper that is solidly in her corner and I'm wishing her all the best.

Take care.

Ruide


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## shannon (Aug 11, 2008)

Thanks Ruide, 
I think one of the big reasons she is being so strong, is seeing all the baby's and toddlers who have been going through so many rounds of chemo. She was talking to a mother of a 15 month old who was on his 6th round. She said to me " If he can do it, then mine is easy". So, all will be fine!
Shannon


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## ivnurse (Apr 14, 2010)

Sending thoughts of wellness your way. And may all your IV nurses get it in one stick!
Deb


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## heruide (Feb 12, 2008)

Deb,

Thanks. I'm now it great shape as I have a Smart Port CT. So it only takes one stick... sometimes two if my doctor after seeing me decides to run additional tests :smack-head:

Ruide


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## antigua (Dec 17, 2007)

Eh Ruide
There's the Canadian in me again!!! "Eh" I had no Idea what you've been going through. WOW!!!! I admire your strength and the love of your family to keep fighting. I can not begin to imagine what you are and had gone through. I wish I could just simply take it all away and make you better. Sounds to me you are in very good hands and are very well looked after. I couldn't help shed a few tears reading your report. My prayers and thoughts are with you and your family. I'm not on here to often to see what's going on. The kids keep me busy......VERY busy. I was shocked when I read this but I'm glad to hear that you are doing better.

Take care buddy

Shane


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## heruide (Feb 12, 2008)

Shane,

Thank you for the thoughts and prayers. Yes I'm fortunate in have a family that has been by my side. During breakfast my DW commented that she could have been a writer but she was took another path and became a nurse so that she could take care of me. Fact is I would have been long gone if it wasn't for all the care she has provided.

The good news is I'm on the way to recovery and may have beaten this cancer.

Take care and thanks again for keeping me in your thoughts and prayers.

Ruide


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## amcdeac (Aug 30, 2009)

Rudie, while we have never actually met in person, I appreciate your gracious assistance and willingness to help complete strangers. Hang tough and keep getting better.

Cheers,

Aaron


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## heruide (Feb 12, 2008)

Arron,

Thank you very much. I will definitely hang tough and get better or I'll have to deal with my DW:whip:

Seriously, I'm very fortunate and blessed since without her strength, care, patience and love - I would not be here today. 

Take care.

Ruide


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## csinns (Mar 1, 2010)

Hi Ruide 
I hope you are doing better , I want to echo the comments made by Arron, you are a generous and kind man and we are praying for you to be able to conquer this disease.
I look forward to seeing you posting more often 

Carl


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## canoeman (Aug 30, 2009)

has anyone heard any news about ruides health.


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