As I left you last, the burning question on my mind was, "why now!". Well, I now know "why now". Dr. S. called me back finally on Wednesday and gave me the reason why along with the consensus of the hematology group on the tumor board.
They have all agreed that with my somewhat confusing history, they want a PET to be sure that the only affected lymphnodes are the ones in my mediastinum and that there is no further involvement. Should this be the case then Dr. S. will proceed with a "curative" dose of radiation. However should there be more that just this area we may be looking at just a palliative dose of radiation, with the possibility of that combined with some form of chemo that I "can" have.
Ideally the treatment option for this is chemotherapy, but the regimen required contains drug, of which I've had my lifetime dose of already, and therefore ruled out. There "ARE" still chemo options that at best would keep things at bay. Then should things progress any further than I think we would be looking at some clinical trials, or "off label" stuff to rid this disease.
Problem with this whole scenario that has my mind going nuts is there is still that "spot" on the upper right neck next to the ear that showed up on the gallium scan! It is my hope that the Dr. is right and it is not related and does not show up on the PET scan. It is also my hope that there is nothing other than the nodes in my chest that show up.
The PET scan will also be valuable the Dr. tells me for "mapping out" the area for radiation in the chest as it needs to be very targeted due to the location of the affected nodes. This will offer him the opportunity to use a heavy dose of radiation, which will hopefully rid me of this crap once and for all.
I've been to the cancer center to sign the necessary consents for the PET scan, also answered some questions on a questionnaire which is part of the "application for approval" package. This has to be approved by OHIP (Ontario Hospital Insurance Plan) which covers the cost of the scan. Should they not approve it the cost would be prohibitive for me to do.
This is whole PET process is to be part of a clinical study which is the only way to get one here in Ontario that is covered by OHIP. This whole thing is B.S. because I also have to travel to London ON. to have it done as there are no PET scans in any of the 2 hospitals here. There IS one here in Windsor, ON. but it is privately run and has been here for three years now sitting idle. That's right IDLE! because they need to perform at least four scans a day to run it, and can not get that many people with the money to pay the cost of it, they actually end up asking you to go to their office in Toronto, ON to have the scan done. Ridiculous but true! I have a friend that walks at the mall in the mornings with me and he just had one done that he had to pay for himself, but chose to do it for his own piece of mind, and was fortunate enough to be able to afford the cost.
So, here I am once again doing my favorite thing, waiting...................... Waiting to hear if I'm approved. Waiting to get a date if I am approved. Waiting to develop and start a treatment plan either way, approved or not. Should I NOT be approved then I would most likely look at trying to put together a quick fundraiser to get enough funds to do one on my own, and closer to home too! There are many PET scans available in the Michigan area and I have enough contacts over there to point me in the right direction for a reputable Diagnostic Imaging clinic.
So here's to waiting once again! Stay tuned, I'll be posting things as I get them.
Love and Hugs to everyone no matter where you are in your journey,
Tim, xxx
Candid Cancer: Medical imaging has come a long way
We cancer patients are routinely poked, prodded, knifed, examined, drugged — and photographed with "cameras" that take "pictures" ever so candidly of parts that some of us never knew we had, much less wanted to see. Indeed, medical imaging devices have come a long way since the first X-ray was taken in 1895.
Since then, generations of scientists have competed or cooperated to develop better techniques to visualize our interiors and to see the parts of us that are hidden by others — and not only in two dimensions but in three. In 1930, the Italian radiologist Alessandro Vallebona was the first to propose a way of capturing a single slice of the body on radiographic film. This method became known as tomography, which means imaging by sections.
In the years that followed, other scientists attempted to advance the technique, but it wasn't until 1971 that technology caught up to ideas. The following year, the first computer axial tomography (CAT) scanner, then known as an EMI-scanner, was installed at a hospital in Wimbledon, England and a patient's brain was the first to be scanned. In the U.S., the first machine was installed at Mayo Clinic where it resides, on display, today. Eventually, the word "axial" was dropped and we now have computer tomography, or CT.
As CT technology emerged, a few scientists, working independently of each other, were developing a different type of technology: magnetic resonance imaging, or MRI. There was great debate on who played what role — Nobel prizes were at stake — but in 1977, the first MRI was performed on a human being using a prototype nicknamed Indomitable, which is now housed in the Smithsonian. The first commercial MRI scanner was produced in 1980.
Both CTs and MRIs produce cross-sectional images of the body, but they use different techniques. CT scanners capture multiple images using X-ray beams and a computer then generates cross-sectional views. An MRI machine also creates multiple images, but rather than using X-ray beams, the machine creates a magnetic field and sends radio waves into the body. Tissues react to the radio waves by sending signals, and different tissues emit different signals, depending on the mixture of elements they contain. A computer translates the signals into images.
But a picture's worth a thousand words. Following are are two short videos that explain CT's and MRI's.
We can think of the entire series of CT and MRI images as a loaf of bread and each image as a slice. Any slice can be taken out of the loaf and turned sideways, over, up or around, so that it can be viewed from the front, the side, the back or any angle and depth desired. As slices are re-stacked into the loaf, a three-dimensional view emerges. (After CTs were explained this way to me, I've slid through every scan hoping my insides are as perfect as Zingerman's Cherry Chocolate bread — seriously yummy!)
As CTs and MRIs emerged, so too did PET, or positive emission tomography. PET evolved in the 1970s from the invention in 1958 of the gamma camera, which could view the distribution of radioactivity by injecting radioactive material, known as a tracer, into the patient.
PET imaging began to play a role in diagnosing cancer in 1999 when the FDA approved an imaging agent called FDG (F-fluorodeoxyglucose, derived from sugar and a small amount of radioactive fluorine) which is the tracer most frequently used to image cancer.
Unlike CT or MRI, which "sees" the anatomy, PET measures metabolism, meaning that it identifies rapidly growing cells, like cancer. Simplistically, rapidly growing cells require more energy, so they suck up more of the sugar in the tracer which then accumulates more heavily in areas with hungry, fast growing cells. The camera detects those heavier accumulations and malignancies light up as "hot spots" on the image. Dr. Ella Kazerooni, Professor of Radiology and the Director of the Division of Cardiothoracic Radiology at the University of Michigan, further explains how CTs and PET's impart different, complementary information. "On a CT, we're basically looking at size, and the assumption has always been that if something got smaller, it's better, and when it got larger, it's worse. With a PET scan, we know that you can have a tumor that does not change in size on a CT, but the amount of PET agent it takes up falls dramatically or goes away, which tells us that the tumor is non-active — that treatment has killed it, but it just hasn't shrunk yet."
On the other hand, she adds, "We might have an area that we're watching on CT that doesn't change in size over time, but now it develops a new area of PET uptake in it, so even though it hasn't changed in size, something may be going on in it that we wouldn't know from the CT. So size has always been used as the measure of tumor response, but we know, in the last decade particularly, that different information provided by PET can more accurately know if a tumor really is getting better or worse."
The newest PET scanners combine PET and CT, so that we now have the PET/CT which gives doctors the metabolic information from PET superimposed on the anatomic information from CT. And in 2008, the first PET/MRI was installed.
Dr. Alan Waxman of Cedars-Sinai gives a more detailed explanation of PET for the Society of Nuclear Medicine:
So which modality is best? That depends on what our doctors want to see and what type of cancer we have. CT's, MRI's and PET's — and other imaging devices — have specific applications and are used for different needs. One is not better than the other for all things. Some types of cancer, for example, don't appear on PET scans, so they're not appropriate for all types, and PET can characterize a tumor as benign or malignant, but benign conditions as well as scar tissue can resemble cancer. Clearly, each of these tests requires careful interpretation by highly trained specialists.
One thing is certain. Before the advent of these devices, millions of people underwent exploratory surgery when abnormalities were suspected. My dad was one of them, and if he were alive today, he'd be quite amazed that machines offer so much information without using a single scalpel. Indeed, medical imaging devices have revolutionized the way cancer is diagnosed and even treated.
Previous installments of Candid Cancer are archived here. Betsy de Parry is the author of The Roller Coaster Chronicles, a book about her experience with cancer and the shorter, serialized version she wrote for annarbor.com. Find her on Facebook or email her.
Betsy's book is available to purchase by clicking the link of her book to the right of this column
Just took a call from my lead nurse at the cancer center and conclusion after much consultation between doctors is Dr. S. would like me to go for a PET scan!! PET scan? Now? Why Now?
I ask these question in frustration only because I have been suggesting and asking about PET scans every time I've relapsed. Here in Ontario you have to "qualify" for a PET scan in order for the cost to be covered by OHIP (Ontario Hospital Insurance Plan). Being "suspect" of relapse with lymphoma is a qualification to have a PET.
Now that I am finally being sent for a PET, I have to mention the next obstacle to having a PET scan. You see I live in Windsor, Ontario and the closest "Government" hospital with a PET scanner is in London Ontario, two hours up the highway, and to make it as easy as possible would also mean spending the night in a motel in London. There is another option in Hamilton Ontario but that would add another hour travel time as it is three hours away.
One other thing I need to point out is the fact that there IS a PET scanner here in Windsor but it is privately run and the cost would be prohibitive for me, not to mention the company that owns it has been sending it's "customers" to Toronto, Ontario, four hours away because they need four people a day booked for a scan in order to operate it, not sure why but that is what is going on with it. Also I have to mention that there are probably a dozen diagnostic imaging clinic's across the river in Detroit Michigan, USA. But again privately run and cost prohibitive. None of my additional insurance will cover it either.
This has been a hot topic for me for a few years now. I have written to Cancer Care Ontario, as well as the Ontario Ombudsman about the fact that the PET scan here in Windsor should be covered by OHIP as we do not have one in any of the hospitals here and having to travel hours away from home is not really something you should have to do when there is one sitting here collecting dust.
So, I placed a call to my social worker at the cancer center today to "vent" about this latest news. I will be leaving a message in the morning for my Oncologist to call me by the end of the day to fill me in a little more on this decision. This is a long weekend coming up here in Ontario with Family Day on Monday being a statutory holiday the cancer center will be closed. I do not want to have to be thinking about this all weekend until Tuesday wondering why this decision was made.
Hodgkin Lymphoma cells
I'd be remiss not to mention the fact that cancer cells are growing and dividing within me while all this is going on as well. remember it was a routine C/T scan in late November that showed the two nodes in my chest that had increased in size, and the Gallium scan that showed cancer activity in my upper right neck. So I think I have a right to some answers and not have to stress about it all weekend.
Now that all that is off my chest, time to move on the the better news of the day. It's Brenda's birthday!! and I , yes me, made a cake and a half dozen muffins all by myself for her! We will celebrate by having dinner out with some of her family this evening, which is why I have to wrap this up and get ready to head out to celebrate!
Love and Hugs to everyone, no matter where you are in your journey.
Tim, xxx
“I am an old man and I have known a great many troubles, but most of them never happened” - Mark Twain
The problem with too much worrying is that it spoils our day, depletes our energy, creates unnecessary stress and robs us from living an enjoyable life. It can get to be a bad habit. Since we cannot help but entertain some worries and concerns, especially if we are dealing with cancer, apply some of these tips that can help you start to regain a sense of control and overcome worries.
1. Identify the Stinger
The first tip is to point out what causes the worry, and do some analysis of the real risk and your goals. Keeping hold of your goals is a very important element. What you want and a belief that you can obtain it has got to be bigger in your mind that what you are afraid of losing. Goals can shift or modify but they've got to be yours.
When analyzing your worry, for heaven's sake don't rely on statistics. They are not relevant to individuals and are based on OLD data. Realize that there are, as Mark Twain famously said, three categories of mendacity: lies, damned lies and statistics. Read The Median Isn't the Message < http://cancerguide.org/median_not_msg.html > Statistical curves may be curves, but they don' tell you where you are on that curve; and they certainly don't include new treatments and changing times that will effect that curve eventually. Statistics are a rear view mirror and you can't drive with your eyes looking behind you.
Realize that in your worry, you may not be assessing a situation correctly. You can find yourself engrossed, thinking about possibilities that may not happen. Identify some people, especially experts, who can help you turn your thoughts around and get you past that stinger. Look for pole stars and inspirational thoughts to give you a different perspective. You can do this. Focus on those who have made it. The realistic approach and analyzing the situation in totality, focusing on the positive and your goals, may help you deal with the worry more effectively. Identify the distressful and worrisome thoughts, and list down a few positive statements you can substitute when the negative, worrisome statements surface in your mind.
2. Discipline Your Thoughts
The amazing thing about our minds is that they are capable of controlling our thoughts. You can take advantage of that by disciplining your thoughts. This technique is based on consciously issuing the command “Stop! I'm not going there" whenever you are feeling the pull of negative or worrisome thoughts. Then, try to replace the negative thoughts with more realistic and positive feelings and ideas, as above. With practice, you'll catch yourself earlier and earlier and shifting gears will become easier.
3. Remind Yourself to be Hopeful and Optimistic
Pessimism and fear are the main reasons behind worrying. One way to stop worrying is quite simply to hope for the best. Trust in your doctor and your support systems. And if you don't have confidence in your doctors, find a new one and start building a better support team. Having a positive attitude can do wonders, and prevent you from the getting obsessed and worried. As the same time, it is necessary to be prepared for the worst. Identify the worst case scenario, how likely is it to happen, accept the facts and then work towards improving it, with the knowledge that you have far more power than you may be giving yourself credit for. Denial is perhaps as dangerous as fear and it leaves the fear hovering in the background. Face the worst long enough to make sure you are taking adequate steps to avoid it. Identify your aces-in-the-hole. There are always options. Reach for them. Learn about clinical trials, attend workshops such as those hosted by Lymphoma Research Foundation, Cancer Connect, the Leukemia and Lymphoma Society, the American Cancer Society, etc. More often than not you can, "ask and it will be given to you; seek and you will find; knock and the door will be opened to you."
4. Keep a Journal
It certainly helps to write down your worries, and tackle them one at a time. Make room in your journal to celebrate your victories and happy moments when they occur. When writing about your concerns, the key is to view them as puzzles or problems to be solved. Break them down. Approach them concretely and simply. Plan well and have realistic expectations. Having faith in yourself can help you handle any situation. When you feel that you are worrying unnecessarily, try to distract yourself to stop worrying. Small things such as calling up a friend, cleaning the room, taking the dog for a walk, turning on some upbeat music, reading a book or watching a movie can be quite helpful. Be sure to then touch base with your journal and record your better mood and outlook. Spend as much time journaling the resolutions of problems and new, hopeful perspectives.
5. Ask the Support of Your Community
If you are currently a member of a certain community (PAL, support group, church, etc.), you can ask their support. If you aren't, then seek a community, whether it be in person or online. It can be quite beneficial to have a support group, but when talking to your friends, consciously seek to de-dramatize, to look for calming, more reasonable words to describe your situation. Understatement and humor help tremendously. Words have power. Avoid exaggerated or hyperbolic expressions. Avoid cliches and catchwords. Look for more matter of fact ways of explaining things. Keep things calm and cool. The way you internalize the situation and the way you express it to others directly affects the level of stress or worry you experience. Things really are bad enough and you can get the attention and support you need without becoming a Lifetime movie of the week. Keep it real.
6. Surround Yourself with Positive People
Find "coaches" and "cheerleaders" who can help you trust yourself more. Right now you need your A team, even if some of the members are new to you. Avoid folks who pull you down or encourage worry, even if they are close family or old and dear friends. Reduce the amount of time you spend with worriers and naysayers. And when you know you are going to see a debbie downer, plan an uplifting event immediately following or as soon after as possible. Empowerment and positivity are contagious. Seek out the buoyant and hopeful. Negativity can be too. And it can be subtle. Don't feel guilty for benching those who drag you down. You need to spend time with uplifting supporters -- they can be in person, on the phone, online or even on television. Find a cancer mentor or buddy. Someone who's been there and made it can be a wonderful inspiration. Imerman Angels, the Lymphoma Research Foundation, the Leukemia and Lymphoma Society and LIVESTRONG are great resources for matching you to a cancer buddy.
7. Meditation and Prayer
Meditation works and studies show it boosts happiness and quality of life. It also improves brain structure, building parts of your brain that foster good mood and positive outlook and reducing anxiety and worry. It is like mental weight-lifting to get emotionally "buff." Find relaxation. There are many forms of meditative practices, and you can choose one based on your need and time available. Some people also find strength in spirituality and prayer that helps them stop worrying. Both meditation and prayer can help you relax and rest. Staying rested can also help deal with situations in a better way.
8. Make a Decision.
If you’re worrying about an unresolved personal or business issue – then it’s time to make a decision. Once you decide what to do, you can begin taking steps for the best possible outcome. An imperfect decision today is better than a perfect one tomorrow. Chances are if it isn't quite the right decision, you can change course. You are aiming for the "best" decision made with available information, not the "right" decision. There is no such thing as the "right" decision.
9. Confront the Problem Head-On and Keep it Simple.
It’s usually not the problem itself that is causing your worry. It’s usually the anticipation of the problem. How will others be affected or react? Or it can be that the problem mushrooms or tumbles into another problem and another. Soon all your problems are one big, unresolvable tangle. Deal with one problem at a time and deal with it as soon as possible. Deal with the simplest and easiest thing first. One step, one problem at a time. If you find yourself frozen, reach out to one of your support people and ask them to help you get unstuck. If you can't find someone at that moment, get physically unstuck: walk, run, swim, go out. This can help you get mentally unstuck fairly quickly. You'll find that if you can shift one thing, the rest might fall into place. Garrison Keillor once advised someone with problems they were avoiding that they could keep bumping their head against that wall of problems until their head ached or get a running start and burst straight through that wall to the other side. The choice is often a long, dull ache in your permanent background or a short burst of "pain" to deal with the unpleasant and get it over with.
10. Count Your Blessings.
Things may look bleak indeed but be creative. In a quiet moment, take a small stack of 3 x 5 index cards and put one blessing in your life on each card. You have a lot to be thankful for. Look around you … We live in a beautiful world (even in winter). Name a person you're glad to know. Make a list of beautiful thoughts. A color, an image that brings you cheer. Don't let yourself stray to what you don't have or feel frustrated about. Focus on things that bring a smile to your face. Keep the stack of happy-making, grounding things that you are thankful for handy to pull out in your anxious moments.
11. There Is No Such Thing as Control, There is Only Finesse
A lesson learned while watching surfers. They didn't make the ocean and they don't create the waves. They learn to feel them coming and ride them. Many tumbles and wipe outs occur before they, or we, gain finesse. But with practice and perseverance, we get there. We must learn to trust ourselves and have faith that we will be able to handle what happens. Form a plan of action. Well, if "A" happens, I can do this or that. Gain knowledge. You don't have to be frantic about it. Step by step remember. Reach out to the trusted sources around you, your doctors, nurses, the social services department at your medical center, PAL, Lymphoma Research Foundation, Lymphoma Association, Leukemia and Lymphoma Society, McMillan Cancer UK, National Cancer Institute, the websites of the big medical centers such as MD Anderson, Memorial Sloan Kettering, Dana-Farber, Mayo Clinic, Cleveland Clinic, Fred Hutchinson, etc. Start with one thing, one step, one wave, and you will get there.
12. Develop a Routine
When life's a muddle or in crisis, keep to a routine. Try to wake and go to bed at the same times. Keep meal times regular. Keep to a structure and a schedule as much as possible. Making life as predictable as you can will help reduce stress and conserve energy. Planning helps you feel in control. Make sure you are getting adequate rest and down time. Make sure you're including exercise and enjoyment time. Plan your days or week as if you were planning a project at work, with the same attention to detail and pride of professionalism. No one deserves your best efforts more than you. If there's too much to do for your current energy level, don't be shy, ask for help, delegate. Tell your friends, family members that you need them -- give them a specific, limited task and give them a time frame so they won't feel it as overwhelming or burdensome. A time frame is not a deadline; it's when they can expect (for this go around) to be able to go off duty. People can't be kept on hold or on permanent stand by. you'll get more help if both the request and the duration are limited. You can make more requests later, but keep each one "bite size".
This blog post is a little behind, but better late than never!
Well, it's something I think I knew from the time Dr.K. called me, the results of my surgical biopsy are in. The pathology report concludes that once again the Lymphoma is back, Nodular Lymphocyte Predominate Hodgkin again this time. I was a year ago this time that I was battling this in my neck for the first time.
This however as most of you know will be my fifth battle with cancer in four years! You would think I'd be able to say it gets easier each time, but that is not the case. It actually gets a little more difficult each time, mentally , emotionally, physically more difficult. I had a lot of pain with this surgery, and rightly so, this was a major surgery just for the biopsy, NCI (National Cancer Institute) definition explains it as:
A procedure in which a tube is inserted into the chest to view the tissues and organs in the area between the lungs and between the breastbone and heart. The tube is inserted through an incision next to the breastbone. This procedure is usually used to get a tissue sample from the lymph nodes on the left side of the chest. Also called Chamberlain procedure.
My incision scar.
That I guess does explain the soreness, along with the fact that just after surgery I had been doing too much too soon!
I seen Dr. S. on the 7th of February to go over this pathology report with him. We discussed many things that day as far at what the report showed and also some treatment possibilities for me. He also discussed the spot on my right upper neck that showed up on the Gallium Scan. It is actually located just next to my right ear, which is call the Parotid lymph-node. see diagram at right.
Dr. S. is not convinced at this time that this is a cancerous lymph node but that it's more a reactive lymph node doing it's intended job, which is to gather infection. So this one will be monitored for now, and possibly a new scan to double check it if it becomes palpable.
Treatment option of choice would be Chemotherapy, however with my options becoming very limited for Chemo, he will be discussing this with Dr. S. to see if there is a regimen she can come up with for me. There is a study that shows some promise using rituximab because nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) express CD20, rituximab may be used as a nonmutagenic treatment option to avoid late toxicities in this rather indolent entity.
Right now Dr. S. is thinking radiation, he is certain he can get it with radiation. We also discussed the possibility that we might do a combination of radiation and chemotherapy. However, this is a preliminary right now, what Dr. S. is going to do is bring up my case in front of the tumor board at their meeting this week, he is also going to consult again with Dr. K. about chemo options this week as well. He said I should hear from him and be back in by the end of the week, so enough about speculation for now.
Tonight is game night! Brenda and I, along with my son Travis, and Uncle Don will be attending the Windsor Spitfires game tonight at the WFCU Center. We have tickets for one of the suite's, I had won these back in January at an event held at the WFCU Center. I was suppose to be doing another event this evening, and that was to be live on the 6pm news on /A\ Channel. I had set this up with Arms Bumanlag who is the weather man and does announcements for community events on his weather segments. This is going to be a PSA for the Windsor & Essex County Cancer Center Foundation's annual bowl-a-thon. Nancy Gibbons from the Foundation and myself were to do it along with Arms, but firstly, I forgot I had the tickets, and game time is 7:05pm and Arms does his segments at 6:15, 6:30 and 6:45pm, and these are being done outside Bowlero Lanes. The two main factors though are related to my neuropathy, and that is I could not stand that long because my feet would be in extreme pain and two, the weather for today is going to be a high of -9 Celsius which would cause even more pain in both my hands and feet. Had the shoot been indoors I most likely would have done it, but Arms being the weather man does his segments outdoors. So Nancy Gibbons will be handling the shoot with Arms. I'm sure he and I will get together at some point for a cause.
Arms Bumanlag
So this blog entry is being shelved for now until I know more about what is going on as far as treatment options and schedule goes.
Update : Windsor lost their game to Owen Sound 6-4. We all had a fantastic time at the game in the comfort of a suite! Still waiting on news of a treatment plan as well.
So in the meantime I've arranged for Liz McMillan from Patients Against Lymphoma to do a guest article here on my blog, coming soon, so enjoy.
Love and Hugs to all no matter where you are in your journey.
Tim. xxx
Well, after getting my hand slapped by my home nurse, I put a short leash on myself. Seems I was doing too much too soon. So to review, Had surgery on Monday, In ICU Monday night and Tuesday till dinner time, then home due to no available beds outside of ICU. I was to take it easy "for a bit" once home.
By Thursday I was starting to feel much better and decided to due my usual morning routine to the mall for coffee and walk. Walking I had decided would be only a mere fraction of what I usually walk, and that is what I did Thursday and Friday. By Friday afternoon I was quite sore and more swollen in the chest area where I had the surgery. When my nurse showed up Friday afternoon and I explained what I had done the last two days, he said I should not be walking any distance at all yet, it was too soon.
Well, after thinking about it all for a few seconds, I had to agree that it was pretty crazy that I thought I should be trying to do some walking 2 days after being released from ICU. Hey, "E" for effort right!
So, for the past week I have stayed put! No venturing out and nothing crazy, just R&R. Today (Friday) I ventured out to the mall, (just for coffee, no walking) and some running around with Brenda to do some errands she needed done. Waited in the van at all but one stop, but that was a quick one, no walking any great distance.
Sore, yeah, no more than normal this past week though and swelling is finally starting to go down. Nurse should be here today sometime, and I'm sure all will be fine. I am now basically down to the waiting game again for the results. Dr. Elalem said seven to ten days. I don't see him for a follow up till the 22nd of this month but I do see my Oncologist Dr. Schneider this coming Monday. I am hoping he will have results, but not counting on it. I know how slow this process is, been there done that.
Then, after I find out what is going on with the biopsy results, negative or positive, there is the issue of the new activity that showed up in my neck! Dr. Kanjeekal had said the results of the Gallium scan did not show activity in the nodes that were enlarged in the chest, the ones just biopsied, and it did show the activity in the neck which the C/T did not show. Yeah confusing I know, but the choice was wait a month to redo the Gallium scan or proceed with the anterior mediastinotomy to get a biopsy of the enlarge nodes.
Like I said in my previous blog post, it was a no brainer to do the biopsy. By waiting who knows what situation I'd be in three months down the road, my history with this crap is not good. So hopefully sometime on Monday I will be posting some kind of news with regards to biopsy results, or some kind of idea on how we are going to proceed and treatment options.
Nurse was here this afternoon, wound looks good and dressing can be removed and stay off at any time now, most likely tomorrow. So until Monday when I should know a little more, I pass on love and hugs to everyone in their journey's no matter where that may be.
They have all agreed that with my somewhat confusing history, they want a PET to be sure that the only affected lymphnodes are the ones in my mediastinum and that there is no further involvement. Should this be the case then Dr. S. will proceed with a "curative" dose of radiation. However should there be more that just this area we may be looking at just a palliative dose of radiation, with the possibility of that combined with some form of chemo that I "can" have.
