[Health] The good news is that you're not paralyzed...

[AWS260]

Jeez, what a roller coaster. It's great to see that you're so engaged in your care and in good spirits.

Have you spoken any more with your docs about immunotherapy, now that you've been through multiple rounds of treatment? In addition to the approved immunotherapy mentioned earlier in this thread, there are some CAR T-cell therapies now in clinical trials for multiple myeloma. Pretty cool stuff -- they remove your T-cells, engineer them to fight cancer, and stick them back into your body. At which point I think you turn into The Hulk.

[Lassr]

Damn.

I hope you are on the road to a full recovery now.

[Kraken]

When I edited 400+ entries for the Boston Globe's "Salute to Nurses" I read 200+ variations on your story, none of them as well written as yours and many of them barely comprehensible. Made me realize just how common serious health problems are (cancer in particular) -- I've been fortunate in that death and disease have not struck close to home since our parents died. If it's at all encouraging, at least half of those stories had good outcomes. Granted, the bad outcomes weren't around to write nomination letters...but their relatives did. Cancer is particularly pernicious when it strikes people in their prime, and especially pediatric patients, but those with otherwise strong constitutions are the ones more likely to survive treatment.

[DD*]

When I edited 400+ entries for the Boston Globe's "Salute to Nurses" I read 200+ variations on your story, none of them as well written as yours and many of them barely comprehensible. Made me realize just how common serious health problems are (cancer in particular) -- I've been fortunate in that death and disease have not struck close to home since our parents died. If it's at all encouraging, at least half of those stories had good outcomes. Granted, the bad outcomes weren't around to write nomination letters...but their relatives did. Cancer is particularly pernicious when it strikes people in their prime, and especially pediatric patients, but those with otherwise strong constitutions are the ones more likely to survive treatment.

Thank you sir - one of the things I find amusing about the whole deal is that, other than the terminal disease that is trying to kill me, I am apparently the picture of health at 50 years old. No issues with cholesterol, high blood pressure, etc. The docs are amazed at how fast my body heals from the surgery (they told me in the hospital that the actual surgery site was 3-5 weeks ahead of where they thought it would be), my recovery via PT and OT, etc. I always tell them that they need to get the damned oncologist onboard with these sort of happy assessments.

[DD*]

I just realized I never updated on the pain in my left hip - it is the early onset of arthritis. Eventually I'll have to have a hip replacement. No relation to the cancer stuff, just normal old age.

[Zaxxon]

[DD*]

Quick update - did a post-surgery update with my ortho surgeon yesterday. He basically said I am his miracle patient - spine is healing perfectly, despite all of the trauma it is in great alignment, the fact that I can jump (relatively) to my feet, walk without the walker (for a few steps anyway), have great strength and flexibility in my legs just 6 weeks out from surgery is amazing. He was genuinely pleased to see just how much progress I had made.

He did release me to drive, and I can start to go back into the office on May 7. We'll see how that goes - I went to Kroger last night and it pretty well wiped me out. Still, I have another week and half before I head in, and I can always go home if necessary. Can't wait to have some real adult conversations again - I'm climbing the freaking walls at home...

[Isgrimnur]

Fire up some MP games and grab some OOers. I’m sure they’d be glad to chat.

[AWS260]

He said adult conversations.

[Isgrimnur]

He said adult conversations.

[DD*]

He said adult conversations.

[MHS]

So happy you're healing well, but so sorry you're having to go through all of it in the first place. If there is anything we can do to help, say the word. Sending strength and love!

[DD*]

Well, time to update on the gift that keeps giving (and no fucking gift receipt so that I can return it...)

When last I updated, I was in the midst of recovering from my 2nd back surgery in 3 years. If you want the details, scroll up. Suffice it to say I was back in the office part time, had radiation oncology zap some areas of the back to kill some cancerous areas that they could not remove during the back surgery, and was relearning how to use my legs.

Then we got to June. Early June I had a blood transfusion; one of the things we were (and are) fighting is low hemoglobin count. On a normal, red-blooded male (pun definitely intended), hemoglobin should range from about 12 to 18 grams/deciliter, depending on what numbers one uses. Over the past month, mine peaked at 9.7 and has generally been lower than that. Low hemo can cause all sorts of issues including shortness of breath, fatigue, etc. One of the treatments is a blood transfusion, hence my visit to the hospital on June 9, I believe. During this visit, they gave me 2 units of blood, and one of the fun things about transfusions is that each unit takes 2-4 hours to complete - yes, it is an all day kind of thing, perfect for a summer Saturday.

Advance to Tuesday; I'm feeling run down at the office and by the time I get home, I'm definitely feeling like I'm running a fever. Confirmed with the thermometer, fever is up over 100. Hit the Tylenol and alternate with Advil. Figure if it goes higher I'll go to the ER that night, if it holds I'll get in to see the doc (oncologist) the next day. Wake up on Wednesday and the fever must have broken in the night. Bed was soaking wet and no fever - yay!

Did the work from home on Wednesday as I didn't want to push things. No fever all day on Wednesday. Thursday, fever starts creeping back in, hit the same routine, it holds the fever mostly in check. I have my normal cancer drug infusion appointment on Thursday, so I do that. Oncologist is not happy with how I look (or feel), sends me to get an pneumonia check (by now it is 5-6 pm), results not ready until Friday earliest.

Friday late morning, test comes back positive for congested lungs, oncologist says get thee to the ER boy. Pack up and have my daughter drop me Friday afternoon. Now the fun begins...

The good folks at the hospital get me into ER Observation, then eventually up to the cancer floor (Oncology). Friday night passes with them pumping me full of various antibiotics to try and combat (what looks like) pneumonia. My lungs are definitely congested and they have me on the oxygen tube that goes up your nose to try and keep my oxygen levels up.

For those that haven't had the pleasure, your oxygen percent should be at 95-100; anything under 90 is low. With the tube, I was running in the 90's and doing OK. For a while. Saturday night, I was really not feeling well, and then my oxygen percent dove down into the 70s. At this point, I pretty much panicked as I *could not breath* (or at least it felt that way!). Hit the call button, started kicking the bed and sheets off, the whole enchilada. Nurses and response team were RIGHT THERE and got me on a forced (positive pressure) oxygen mask. This got me normalized enough that they did not have to intubate me, but it was a close thing.

At this point they called all the doctors (pulmonary, infectious disease, oncologist, etc). Must have been 15 people in my room. Eventually I was moved to the monitored ICU and I was on the mask for almost 3 days, and they were calling my family in from out of town to see me. Basically, it was a 50/50 thing whether I would recover from the pneumonia. Had a lawyer come in so that I could make sure my paperwork was in order and had some not-so-pleasant conversations with my brother, who would be executor on my will, should it come to that. Not a fun experience and I don't recommend it.

After 3(?) days, the congestion in my lungs started to rapidly clear. The symptoms were very much like pneumonia, but the very rapid onset and recovery was atypical. More on this later. In any event, I was out in a week, damn near fully recovered.

Since then, I've still been dealing with low hemo, though I am back to doing my drug therapy (modified somewhat in dosage and which drugs are used). The whole incident gave me some inspiration to start getting more seriously engaged in handling the disease, so I went this week to visit MD Anderson cancer center in Houston. How we got to Anderson is a story in itself, but I'll spare the crowd - PM if you really want the scoop.

My brother and I went down Monday night and I had an appointment with one of their myeloma specialists on Tuesday. Anderson has 7 docs that only do myeloma research and treatment; my current hospital is more of a generalist place and I don't think they have anyone that focuses just on myeloma. I look at it as going to a specialist mechanic versus the guy that does most everything.

After meeting with Dr. Anderson (not her real name), I had a whole heck of a lot more insight into the disease and my options. She is going to provide a recommended treatment plan (not too far off what Dr. Beaumont (also not his real name) currently has me on) and I'll be discussing it with him next week. I also am starting to pursue some clinical trials, just in case. I don't qualify for most of them at this time, but it doesn't hurt to get the ball rolling. Dr. Anderson is really of the opinion that the "pneumonia" was more like a toxic reaction to the drug therapy combined with the radiation treatment (flashback to post spine surgery).

After the all-day appt at Anderson, my brother and I hit dinner, then back to the hotel. I was physically wiped out - really tired. Figured it was just a long, stressful day in Houston (hey, 92 degrees and 90 percent humidity - I forgot how much I loved living here...). We get back around 6-7 and the phone rings. Dr. Anderson - my test results were back (they pulled bloodwork after my appointment) and my hemo was down to 6.6. She doesn't want me on a plane or traveling with it that low. Get thee to the ER and get two units of blood overnight. If your levels are up, you should still make your flight on Wednesday afternoon.

Off we go...

At the ER, they get me started on blood transfusion number one. Something you have to remember about hospitals - and if you've ever been in one for a while, you'll understand - nothing happens rapidly. Since I was not bleeding out all over the floor, I was not a priority for type and match, pull the blood, warm it (can't give you cold blood), etc. Plus they had to figure out if they could use my medical port or would have to do a normal IV. This meant they had to get a chest x-ray to see where the port went, as my records from Beaumont did not have these details. Etc. Etc. Etc. And the transfusion takes 2-3 hours. Suffice to say, we did not make the 1:00 pm flight on Wednesday. Nor did we make the 3:00. Or the 5:00. Which was the last one out that day....

In the end, I had to get 4 units of blood to get my hemo numbers up high enough for them to be satisfied I could travel, and we finally got out and home Thursday morning. I have an appointment with my oncologist here next week, and we'll be discussing the Anderson recommendation at that time. Hopefully it will go well.

Thanks for reading the novel (so much for a quick update!) and I am glad I'm able to give you one. Was not so sure about that at one point!

[Daehawk]

I feel bad for sitting here fussing my side hurts along with other crap in my life.. Geezus man thats a lot to deal with. Dont think I could do it. I hope it straightens out sooner than later and wish you the best.

[Zaxxon]

Sucks, man. Best of luck and hopefully things look up from here.

[dfs]

Something you have to remember about hospitals - and if you've ever been in one for a while, you'll understand - nothing happens rapidly.

This SO much. It's just part of hospital culture and for folks who want "answers now" it's very frustrating.

Good luck with your treatment. It's encouraging to see your spirits so high after all you've been through.

[Baroquen]

Wow, DD, that's rough. Good luck man, and I hope happier times are right around the corner.

[Blackhawk]

I'm sorry that you're going through this. I don't get involved in this thread very often due to some really bad memories it stirs up, but I want you to know that I do keep up to date and think of you and your situation.

[DD*]

Wow, DD, that's rough. Good luck man, and I hope happier times are right around the corner.

As long as I'm able to give these updates, I'm a (relatively) happy camper! Lots of folks out there have it worse than me...

[Kraken]

Yikes, what a story. I'm glad it resolved favorably and hope your next update is about a miraculous full recovery, danged if anyone knows how.

I need to start donating blood again. I stopped one pint short of my 4-gallon pin after a couple of bad experiences, but your tale motivates me to try again.

[Drazzil]

... I'm pulling for you DD!

[Smoove_B]

Get well, man.

[DD*]

Been a while since I've provided an update, and I wish I had some better news. Had my normal follow-up with my oncologist on 10/4. In the past, I think I’ve explained that they use a measurement called ‘free light chains’ or ‘light chain analysis’ as the main indicator of what the cancer is doing. In a normal person, this measurement is just about “1”. Mine has been all over the chart, from over 1000, down to 240 or so, and now back up over 800. In other words, the drug therapy program that I’m on is not putting the cancer into remission. So, next steps…

The free light chains and other blood work are all inference – they let the docs make an educated guess, essentially, about what’s going on. Since my numbers are all over the place, I now get to move to more fun direct measures: a bone marrow biopsy, which is where they physically remove some bone marrow and count the number of cancer cells directly, and a PET scan which uses radioactive marking dye to scan the whole body. I'll be doing both of those tests this week.

In addition to the cancer itself, I have a number of other "things" going on. About 3 weeks ago, my legs and feet, especially on the left side decided to swell up like a Ballpark frank on the 4th of July. My nose also decided to get into the act. None of the docs seemed to know why this would be, so off I went for an MRI on the biggest offender, my left leg. Waiting on results from that one. Swelling is still there, but not as bad. However, control of my legs has reverted to what it was when I first got out of the hospital after spine surgery back in April; I can't drive and have to use a walker or wheelchair around the house. No idea if that is going to get better or not. I have a new orthopedic oncologist looking at the swelling and leg issues. Oh, and the hip pain I've mentioned before? Turns out the top of my left femur is essentially being starved of blood and as a result is collapsing; this causes it to catch, grind, and generally misbehave in various painful ways. Steroids, kids, they just aren't worth it.

Also, I have a new PCP who is looking at any and all other issues. So far, he's found that my vitamin D is very low and my blood sugar is somewhat high, likely due to the steroids I've been on for 2+ years. He's looking at treatment options now.

So that is kind of where we stand, treading water a bit. Hopefully after this week I'll have a better idea of what is next. Thanks for listening and for the good thoughts and support!

[LawBeefaroni]

Sorry to hear you're kind of stuck in limbo but sounds like you have a good team and you're on top of things yourself as well.

Bone marrow biopsies do not sound like a ton of fun, nor does a full contrast PET, but they should provide a lot of data.

[Kraken]

Sorry to hear about your setback. Can we please skip right to the post where you tell us that you're cured and on the mend?

[LordMortis]

Sorry to hear about your setback. Can we please skip right to the post where you tell us that you're cured and on the mend?

+1. We're ready for you to be better now.

[Blackhawk]

Damn, I'm sorry that things aren't improving. A first thought is that they aren't getting worse, but when you are in constant hell, treading water sucks.

The good news is that the PET scans aren't so bad. They're boring, but that's about it.

[Daehawk]

Hoping the best for you.

[DD*]

Sorry to hear about your setback. Can we please skip right to the post where you tell us that you're cured and on the mend?

I am certainly looking forward to writing that post, my friend. I figure no one has ever been “cured” of cancer, but someone has to be first, right? Why not me?


Sent from my iPhone using Tapatalk

[Kraken]

Maybe not cured, but a good percentage of people go into remission long enough to die of something else many years later. Be that guy.

[The Meal]

This ain't right. C'mon boDDy, get your shit together.

[Paingod]

I'm sorry to hear it's gone sideways - but that doesn't mean you're off the track. Just need to get into the pits and get a tune up, right? Staying positive is a must.

as my records from Beaumont did not have these details

This is one of the reasons I'm working to accumulate all the raw data from my medical experiences lately into a set of backups I can simply give to a doctor. I've yet to have any office refuse to release it to me. When I walked in to see my PCP and discuss my eye issue, they found it really helpful that I was able to hand them the CT scan results, previous doctor's notes, steps taken, etc. I refuse to start over at square one with each doctor I see.

[DD*]

I'm sorry to hear it's gone sideways - but that doesn't mean you're off the track. Just need to get into the pits and get a tune up, right? Staying positive is a must.

as my records from Beaumont did not have these details

This is one of the reasons I'm working to accumulate all the raw data from my medical experiences lately into a set of backups I can simply give to a doctor. I've yet to have any office refuse to release it to me. When I walked in to see my PCP and discuss my eye issue, they found it really helpful that I was able to hand them the CT scan results, previous doctor's notes, steps taken, etc. I refuse to start over at square one with each doctor I see.

One of the reasons I switched to a new PCP is to get all of my docs under one umbrella. Now they all practice out of one health system, all have access to the same EMR, etc. Makes life a lot easier when I'm going from one to another if they can all see the same test results, treatment history, and so on.

[Anonymous Bosch]

Sorry to hear about your setback. Can we please skip right to the post where you tell us that you're cured and on the mend?

Just to clarify from what I recall of my friend's Multiple Myeloma, it doesn't work like that; it's a treatable condition like diabetes, but as of yet I don't believe it's curable. Having said that, the remarkable advances they're making in treatment will hopefully make it curable in the not-too-distant future.