Doctor Morning

This morning I have a doctor appointment to get the results of my bloodwork and more. Back later. Hopefully, I will get medical clearance to go to Bouchercon.

Diabetes Doc

Today was Diabetes Doc time for Sandi. Things went okay. She wants the cancer doctor  to run some blood tests for her, but that is a fairly routine occurrence. She has concerns, as she always does, and said to double check with her on whatever chemo is developed so that she can advise how to best handle things from her perspective. All in all, no surprises as things went as expected.

In other news---no word yet on the biopsy plan. We are still scheduled to see the cancer folks Wednesday for the doctor visit, lab work, and IVIG infusion.

Bill Crider's Pop Culture Magazine: Update

Bill Crider's Pop Culture Magazine: Update: I spent a good bit of the day today at M. D. Anderson.   My doctor is Eleni Efstathiou, MD , who is, according to the nurse, a "super d...

Sandi Update

All the blood tests came back clean. Negative. Clear. No sign of anything virus or any other thing doing anything that would cause her anemia. Basically, they found nothing to explain why her red blood cell count is not coming up. It just is not moving.

The only thing they found is she is a bit low on folic acid. That might be making the anemia worse so they are putting her on a supplement for that.

Going forward the plan is for her to start chemo Tuesday assuming everything goes okay blood work and doctor visit early that morning. They would do the four day hospitalization deal which would mean she probably would not come home till Friday evening.

On the something fun front----If she is up to it we also plan to go see Jenny Milchman at THE WILD DETECTIVES Sunday evening as she will be in town for her book signing. This assumes she can go and I am well enough to drive down to the location as it is very far from our apartment. Time will tell on that.

Chemo Round 6--Part 1--DONE

Finally home after the chemo today. Sandi had a very rough time this afternoon for awhile, but they intervened and got things back under control. Hopefully things will go better tomorrow.

Update On Sandi

She is very anemic, but otherwise her blood work was good today. The biggest concern right now is she may have to have a multi unit transfusion of red blood cells. The hope is that by the time we get back in on Monday her numbers will have climbed and the transfusion won't be necessary.

Whether or not she can have chemo next Thursday and Friday as she should is very up in the air right now.

Back Home From The Cancer Doctor

It was a zoo out there, but we are finally back home. The 30 minute blood tests all came back with their usual numbers. Now we await news on the ones that take several days even if there isn't a holiday. Everything looks about the same as last time so they went ahead and gave her the last round of childhood immunizations for now. Assuming things work right, her next round of those shots will be at 24 months post stem cell transplant which works out to next May.

In the meantime, we can't do the PET SCAN she needs to asses her cancer situation as her blood sugar numbers are too high. The max for such a test is 200 though they really prefer 180. She is seeing numbers between 300 and 550 which are very bad numbers.

Which is why she has a new endocrinologist and now is on insulin shots. As expected, the shots have made her way worse on her blood sugar numbers than the oral medications, but we are told to wait and be patient as the right dosage has to be found for her so they can work her numbers down.

As it stands now, she is back in bed having been worn out by all this today. We go back down there Monday for the endocrinologist appointment. Then, barring anything else, three weeks from tomorrow she will have another multi hour IVIG infusion.

Update on Things

This has been a hard week for both Sandi and I both physically and mentally. The bills keep piling up, the calls about them keep coming, and we both feel pretty bad. Sandi's ongoing feet issue has been really bugging her and the warmer weather certainly is not helping her ongoing breathing problems. Next month marks a year since she went on oxygen equipment 24/7. What little hope we had that it would be temporary seems to have been nothing more than wishful thinking.

You have not seen much from me these last few days and what little you have seen has been accomplished by my lying stretched out on the floor on my stomach trying to type and click to do whatever. The ongoing back and leg deal has been insane this week. Tomorrow Sandi has a long day infusion deal and how I am going to make it through sitting in their institutional chairs I have no idea.

Despite how bad the week has been and more, one thing happened that is simply wonderful. The good folks of Tapir and Friends Animal Store for whom I do a little freelance writing for as I can have created a page  devoted to some of Sandi's creatures. Through the site they have offered them for sale with the monies made going to help Sandi pay for cancer treatment. They have Sandi's stuff in their warehouse and can ship quickly as well as market her items which takes a burden off of us that is increasingly difficult to accomplish.

Sandi's page is here and I hope you will check it out as well as the other things on the site.

Review: "When Your life Is Touched By Cancer: Practical Advice and Insights for Patients, Professionals and Those Who Care" by Bob Riter

Around here we know something about cancer and its impact. More than we ever wanted to know. So does Bob Riter, cancer survivor. He is also the executive director of Cancer Resource center of the Finger Lakes in Ithaca, New York. He is also the author of When Your life Is Touched By Cancer: Practical Advice and Insights for Patients, Professionals and Those Who Care.

The nine chapters of this book are made up of various columns author Bob Riter wrote for the Ithaca Journal newspaper about his cancer as well as cancer in general. At age 40 Bob had breast cancer, had a mastectomy, and treatment. He wrote about, not only his experience, but the various cancer questions he has heard from patients or their loved ones over the years. This is book that is not meant to be read in one sitting. The short chapters are designed to be read here and there as the mood or need strikes. This is especially true in the beginning because the patient and loved ones are over whelmed.

The first chapter addresses that stunning “Just Diagnosed” time in those first few days after the doctor or, in our case here, five doctors tell you the news. Along with the aftermath and dealing with that, the chapter explains some questions that are really okay to ask, whether a second opinion is warranted and how to go about it, and the power of positive thinking and hope.

Starting on page 16 with “Chapter 2: Talking About Your Cancer” the author gives some advice on how to tell the kids. Just as hard can be telling your parents and the in-laws. How does one deal with telling others at work and in one’s social circle? Their expectations and their concerns? How does one deal with that well-meaning look of pity that cancer patients get all the time. These are just some of the common topics dealt with in this chapter.

“Chapter 3: Treatment Choices” opens with some words on alternative cancer therapies and alternative practitioners. Clinical trials are covered here as is a little bit about various treatment options and quality of life.

Communicating with your health care providers is hugely important and that is the subject of “Chapter 4: Your Health-Care Team.” Beginning on page 39, the author has advice for patients and medical providers on how to communicate effectively. Communication both ways between the patient and the team is incredibly important and that thought is reinforced repeatedly through this chapter.

“Chapter 5: Caring for Yourself During Treatment” is possibly the most important chapter in the book--- in my opinion. Dealing with the depression, the anxiety, the stress, and all the rest of it is just part of this chapter. Also included are explanations of some of the treatment side effects such as “chemo brain” as well as the various physiological transitions of the disease.

Relationships are an element of the entire book, but get special consideration in “Chapter 6: Cancer and Relationships.” Starting on page 65 the chapter addresses being single with cancer followed by addressing what it is like to be a relationship. What that means for the patient as well as the spouse. Specifically addressed in the chapter is how men often want to “fix it” for their spouse and the fact that is not possible brings its own burden and frustration. It certainly has been an issue for me.

You finished your treatment. Your cancer is gone and yet you are still tired and the mind is still very muddled. You should feel better, you think, and yet things seem weird and you miss your treatment team. You may have a case of the post treatment blahs and that is covered in “Chapter 7: After Treatment.” Dealing with survivor's guilt is covered here. Also covered is how to cope if or when the cancer returns as well as dealing with cancer as a chronic disease.

“Chapter Eight: Reflections on the Cancer Experience” begins on page 83 and covers how folks responded to the diagnosis of cancer in others. There are a lot of good people out there doing wonderful things that one never hears about in the daily diet of politics, wars, and crime in the nation’s media. Also covered here is the power of support from others and how much it means for patients and their families. As noted in earlier chapters, the power of hope is part of this chapter as is relishing the moment of now.

Often one does not know really what to say when a person they love or know has cancer. It isn’t easy. “Chapter Nine: Supporting Others with Cancer” is all about that in every aspect. The difficulties of being a caretaker and trying to help someone from a long distance are just some of the areas covered here in the final chapter of the book.

A two page resource list comes next followed by a five page index.

The subtitle of this short book, Practical Advice and Insights for Patients, Professionals and Those Who Care makes it very clear what the book is designed to do. The book delivers across the board in all aspects and is very much a supportive and caring read. I truly wish something like this had been around on Thanksgiving Day 2011 when Sandi was diagnosed with cancer the first time. It would have helped.

Reading this book now months after her cancer came back with a vicious vengeance in late 2012 and everything we have been through since was an incredibly emotional experience. Our lives weren't just touched by cancer; they were run over by a 50 ton cancer bulldozer. A bulldozer that has made repeated passes over us and continues to loudly snarl and spins its treads in preparation to roll over us again. So, it is impossible for me to be remotely objective about cancer or this book. Cancer isn’t something I can look at dispassionately and be objective about as I such rage about the diease and what t has done to us. nor is the book. While the author may be unsettled by equating the terms of war and military combat with having cancer, for us, it is a war. It is a flat out physically and emotionally grueling day by day war where we measure everything by various test results and how she feels.

All I can say is When Your life Is Touched By Cancer: Practical Advice and Insights for Patients, Professionals and Those Who Care by Bob Riter is an incredible book. I hope and pray you will never need it, but if you ever do, it’s good to know it is out there and can help ease everything just a little bit.

When Your life Is Touched By Cancer: Practical Advice and Insights for Patients, Professionals and Those Who Care

Bob Riter

http://www.crcfl.net/content/category/bob-riter-s-cancer-columns.html

Hunter House Publishing

http://www.hunterhouse.com

February 2014

ISBN# 978-0-89793-679-8

Paperback                    

145 Pages

$14.95

Material supplied by the good folks of the Plano Texas Public Library System.

Kevin R. Tipple ©2014

Sandi Update

Everything is pretty much the same. At least it appears that way to us. We go back to Texas Oncology down at Medical City Dallas tomorrow morning for blood work and a doctor visit. Always dread going down because I am always afraid that there will be another unpleasant surprise. Had way too many of those.

Please keep a good thought, prayer, wish for her .....

Back Home

Just got home. Sandi is a little anemic and a little dehydrated, but other than that all her blood work is the same. Instructions are to continue on as she has been doing and drink a lot more water. Neither is a critical issue at this point, but, they are a little worried. One hopes that if she gets hydrated back to normal that may help the anemia too. If not a transfusion will be in her immediate future.

No word yet on the PET Scan here as she can't fly to Mayo to do it as she is still very much oxygen dependent. Amazing just how heavy those cylinders are when pressurized.

Back down there next Friday.

Sandi and the Hospital

Sandi remains at Medical City Dallas and is not a happy patient. She has completed a CT scan of her lungs (not the full body one I thought she was getting) and has had a blood transfusion. They did a nasal swab yesterday and that has comeback as negative for MSRA and Staph. They are awaiting more test results that they hope to have tomorrow as they try to determine if it is truly pneumonia. In the meantime they are using two very powerful antibiotics on her in the hopes they will either stop whatever is happening or slow it down long enough they can get a handle on things.

They intend either tonight or tomorrow to get a sample one way or another of the actual lung fluid. Not only do they want to culture it, they want to examine it in some way. When I directly asked if the nightmare scenario that I thought of at 3am this morning was possible that the lung fluid was a sign that her original cancer was back, the only answer I got was "we are exploring all options and possibilities." To me that indicates that, just like it turned out to be in November 2011, the lung fluid could be a sign of cancer.

I also did not know before today that one had to have a white blood count above a certain threshold before one would show symptoms with pneumonia. The coughing, fever, etc that one thinks of with pneumonia all require a white blood cell count above a certain point before there are obvious symptoms. Sandi has a white blood cell count that while slightly higher than last week, is down significantly from two weeks ago and is below that threshold line that triggers an immune system response. Despite that fact, Sandi is coughing now a bit and coughing quite hard at times which seems to indicate additional fluid in the lungs.

She is on a high level of oxygen all the time and it is now being run through some sort of cylinder full of water to moisten the air before it goes into her. The only time she goes off of it is when she goes to the bathroom. On several occasions she has come out of the bathroom to find a nurse waiting for her with the oxygen sensor to check her once she gets back in the bed. Each time she was 69 or less. The worst I saw while there was a 62. Whether this means she is getting worse I do not know and those I asked were very noncommittal.

The bottom line is nothing positive is going on except MSRA and Staph have been ruled out. We await more test results. The original timetable had her getting out tomorrow which every nurse said flatly today would not be happening until her numbers off of oxygen would be above 90 and hold. I had figured that much out without being told. Clearly, when she drops to 69 or worse during the few minutes it takes her to get to the bathroom with her IV stand and back, there is no way she is coming home anytime soon.

So, she is down there and very unhappy. When I left her late today she had started coughing more and more from time to time. Since she has a deviated septum they would prefer she wear a mask for the oxygen. Since the mask is of a size that she would have to take her glasses off and lay there blind to the world, she is adamant that she won't wear the mask. So, she has the tubes up her nose, her crochet needles in her hands and is working away on her chemo hats.

More as I know it....


10 PM UPDATE----
Late this evening they tried to make her cough up some stuff so it could be analyzed. That did not work and instead caused issues for her including a rise in her blood pressure and a severe headache. They gave up that attempt and will re-asses in the morning. At this point, the only other option that I know of is they could try to stick a needle through her ribcage into the base of a lung to get a sample. That is not a good option considering the permanent scar tissue damage she already has in her lungs from everything back in November 2011. Even when on full oxygen and reclining in the bed, the best number they are getting tonight is 92. That is way too low for that situation from what we understand..

Sandi's Doctor Day--Update

This has been a long day and Sandi has had a serious setback. How major a setback this will be, we don't know yet. Sandi has been admitted to Medical City Dallas so they can run tests. The belief is she has pneumonia at an early stage. Her oxygen saturation level in the cancer doctor's office was 77 on one machine and 72 on another. They did an x-ray of her chest and there is what appears to be fluid in the base of both lungs. Lots of tests are planned to determine what is going on including a full body CT scan. She also will be getting a blood transfusion as well as additional antibiotics.


Of course, for us, this fluid in the lungs deal is very scary as this is how her cancer first presented in November 2011. That fluid in the lungs got so bad she was hospitalized, the right lung collapsed, and there were all sort of complications. That also led them to start looking for what was causing the fluid and that ultimately led them to discover and diagnose her two forms of non hodgkins lymphomas.


So, we have been down this road before and are not happy this has happened. Assuming it does turn out to be pneumonia they will have to determine what type it is and how best to treat it with everything else she is dealing with post stem cell transplant wise. While her blood work showed slight improvement, that has been far overshadowed by this new problem.


More as I know it.....

Doctor Day Completed

Just got home as of noon from Medical City Dallas. Sandi passed all the blood work tests and evaluation and they are thrilled with her progress. No change in medications. She was again warned to take lots of precautions from the Texas sun as her skin cancer risk is now much, much higher post stem cell transplant than it was. Treatment plan is to be back next week for blood work only assuming nothing turns up in the meantime. In two weeks she will have blood work and a doctor visit.

My leg and back are causing a lot of agony today so I need to lie down for awhile. Falling twice yesterday evening certainly did me no favors. Have to make us all food too. So, don't expect anything further from me today for quite awhile.

Doctor Day Tomorrow

Sandi's first appointment since she returned from her stem cell transplant is early tomorrow afternoon. It has been awhile since we made our way down to the offices of the cancer doctor at Medical City Dallas for blood work and an office visit, but, that is the plan for tomorrow afternoon. With her car dead in the parking lot, hopefully nothing will go wrong with my car and we can safely get there and back. We also hope the blood work news is good and she won't need any transfusions or infusions.

She continues to tire easily and have the chills and hard shakes after every meal. But, she has started getting a little color back and does not look anywhere as pale as she did when she came home a week ago  Monday. She looks a lot better than she did.

One of the things the folks at Mayo really wanted her to do was walk a little bit each day. Not only does it do something to help strengthen her immune system, walking a little each day will hopefully start to strength her endurance. That should eventually help with future medical treatments assuming she can get back some strength and endurance. Weakness is a huge issue for her and probably plays a role in the post meal chills and shakes.

Today was the first day she felt strong enough to walk a little bit. With Scott at her side she went out for a little while this afternoon for a short walk within  the complex. They were gone a little over a half an hour and kept it close and slow. It wore her down quite a bit, but she said it felt good and that she was glad she had tried to walk.

Her appointment is in the early afternoon tomorrow so with travel time and all that, I have no idea what time late tomorrow afternoon or evening we will be back. I will update sometime late tomorrow when I can.

Birthday--Plus 25

As Tropical Storm Andrea works her way northward across Florida this evening, Sandi is finishing up her 25th day since she had her stem cell transplant. She continues to do amazing well all things considered. She still has some pain in her neck in the area of the blood clot, but the swelling seems to have gone away. Hopefully this does mean the cumidin has gotten to a high enough level that the blood clot is finally dissolving.

Tomorrow afternoon she has approximately four different appointments in different labs and back and forth to the cancer doctor office to see how she is. Sandi is still wanting desperately to come back home. The original plan was for late June, but they gave her a little hope last week she might be home sooner. As much as I want her back home too, I want that damn blood clot gone first as I am very worried about her flying with it.

I don't expect any information from her until late tomorrow--possibly early evening--and will update when I know something.

Birthday--Plus 19

Sandi continues to do the same as her fourth evening in the extended stay facility winds down. She had another doctor appointment today with her cancer doctors who remain pleased with her progress. Her various blood counts continue to trend upward which is a good sign.

A not so good sign is the fact that her cumidin numbers remain very low. It had been my understanding they had given her a shot of this the other day and it was a one time occurrence. I was wrong. In addition to some sort of injection she has been giving herself twice a day of blood thinner, apparently she has been taking cumidin several times a day as well. Because her numbers are so low they have upped the dosage as well as the frequency of the dosage. Until she gets to somewhere between 2 and 3 as they measure it, they will not ultrasound her neck again and check the status of the blood clot.

I really wish they would as Sandi tells me her neck remains swollen, painful and stiff in the area. Her voice becomes very raspy if we talk for any length of time at all. That is caused by the blood clot pressing through the artery and up against her vocal cords. Then there is the fact that her energy level seems to be markedly down the last couple of days and she is very cranky. Of course, she is now expected to do far more for herself than she was while in the hospital and that no doubt is taking a toll on her. It may also be the constant toll of being poked and prodded as well as trying to placate a husband who isn't there and is now very worried because of the blood clot.

I do not know what is going on with her. All I know is that she sounds very weak and sick again and nothing like she has in recent weeks that gave me so much hope that maybe she was going to beat this damn thing. I am hoping that nothing bad is happening to her and the damn blood clot dissolves quickly.

All this just has to work.....

Sandi Update

It took far longer than planned today, but Sandi is moved from the hospital over to "The Atria" for the next phase of things. This is where she will be for the next two to three weeks while they monitor her and make sure things are staying on track.

Things are on track, but there has been a definite wobble of the train. Apparently yesterday afternoon she started having a little soreness in the right side of her neck. The area was also slightly puffy. While she didn't tell me because she knew I would worry, she brought it to the attention of the nurses. By this morning it was clear it was a little worse in both regards. Before they pulled the three line deal out of her, they did a quick ultrasound of her neck

Sandi has a small blood clot in the main artery that runs up the right side of the neck between the heart and the brain. After they explained this happens to about 90 percent of patients who go through what she has gone through the last several weeks, they then told her that her particular clot is very small as compared to what they normally see. They believe it will soon dissolve. They gave her some cumidin today and sent her over to the extended stay facility with a box of shots that she is to administer to herself twice a day into her stomach.

Blood clots are bad news and while I am rather freaked out about this, she is taking the attitude that it is no bog deal and will go away quickly. Hopefully, it will. Her first appointment back at the hospital is tomorrow and she has a schedule for the next week where on most days she will go over for a doctor visit and/or blood work as they monitor things.

Medical Updates

Yesterday was a bit much for me as both Scott and I had doctor visits. With that doctor office deal, a trip to one store for groceries and a trip to another for a new medication for me, and a couple of more errands, the day was way too much for me. So, I have not been online and have not updated this blog.

First and foremost, Sandi feels great. Considering how dangerous the procedure on Monday was and what we expected IF things went right, neither one of us expected her to do so well. We weren't the only ones as the doctors and staff there are absolutely amazed. She remains on some cardiac telemetry, but all the IVs remain pulled. Her appetite remains up and all the blood work so far looks amazingly good. One gets the feeling nobody can explain what happened or why, but everyone is just keeping fingers crossed that it keeps up.

Sandi's biggest complaint is that she is seriously bored. She feels significantly better than she did last week, or in recent memory, and is now feeling very trapped in the hospital. Sandi feels exceptionally fine and wants out and to get back home. She has told me over and over she feels like she did way back before the cancers and feels like she is completely well. It seems too much to hope for, but, we are hoping this continues.

As much as I have been mad at Wal-Mart for overriding the doctors here, the transplant center, their own insurance company, the doctors at Mayo, and numerous other medical folks who all insisted that Sandi needed to stay here for the transplant, this may have, in fact, been the best thing for her. So far things have worked out wonderfully once she was in the BMT Unit and the results to this point are amazing. I have not heard her sound this good in years.

In other medical news......

The results came back and everything is fine with Scott. We didn't expect anything otherwise, but this is still good news. He has finished the semester at UTD and is awaiting his grades. He is taking the summer off to recharge as the stress of everything here and school has clearly been way too much. The kid needs a break and is taking one while he can.

As to me--for the most part things are what they normally are. A couple of issues did turn up in the blood work which could indicate MS or some other neurological disorder. I'm being referred to a new neurologist for further evaluation and testing to look at what has happened to me and how I am gradually getting worse. At this point it is too early to say definitively that I have MS, but there are indications that it is a definite possibility.

I've never really believed the diagnosis of sciatica I was given three years ago this month. Not just because the two back injections I got failed to do anything (the second one made me worse), but the fact that I have issues with my arms and hands from time to time that do not fit the sciatica profile. Considering my injections came from the same company that has been in the news with all the issues, I do feel very fortunate to not have contracted another problem thanks to the injections.

Hopefully in a few weeks I will have some definitive answers and maybe even a treatment plan to alleviate some of my constant pain and symptoms. If it is some sort of neurological disorder I know that in all likelihood whatever it is can't be cured. More than anything, I would be very happy to be in less pain.  I can deal with the falling, tremors, weakness, etc, but the constant pain is what really gets to me.

Sandi Update

She had her shot early this morning and seems to be doing okay. So far so good. She did not get an afternoon nap today like she should have because our phone was constantly ringing. Over a dozen phone calls this afternoon and things seem to be coming together. Nothing is totally finalized, but, this seems to be the current plan.

In about ten days she will be in Jacksonville, Florida at the Mayo Cancer Center Clinic for her stem cell transplant. Because of everything here  I am not going to be able to make the trip. Somebody has to stay herewith the boys (both special needs and they can't drive)  and hold down the fort. Fortunately, a friend of hers has agreed to go and will be flying back and forth at various stages over the next two months to help Sandi as she goes through the process. The process is very complicated and I will explain later when I am in better shape to do so. The bottom line is Sandi will be gone for two months and I can't be there or do anything about it at all.

I'm very frustrated that things are being handled this way as it would have been easier on the patient and us if she had stayed here with the doctors she has been working with the last several months. We are not being given the choice to make the medical decisions on this as her employer, Wal-Mart, is mandating everything regardless of what the doctors involved, the insurance company, etc., think. We have no choice at all! The only saving grace in this is the fact that her cancer doctor here spent a lot of time in the past working with the man who will be working Sandi's case while she is in Florida and has tremendous respect for him.

I have to trust this stem cell transplant thing is not only going to work, but this trip and everything with it is the best thing for her. And somehow come to terms with the fact that there is not a damn thing I can do about any of it.