Taken a while, but wanted to finish up this eventful story with the last installment!
Last Tuesday, we hit the road early – 6:30 am – to head to Richmond for my ‘real thing’ treatment of Zevalin. We were really glad for the HOV lane this time…it was a real timesaver! Got to Richmond in our usual 1 1/2 hours and by now the parking/getting to the right place in the hospital was old hat to us.
Got to the Nuclear Medicine department and signed in…and of course they had me in the computer for 11 am….but I knew Dr. Fratkin had a scan scheduled for first thing – so I just said to let them know I was here. Sure ’nuff, they knew I was there on time, regardless of the computer.
Went back to the same room as the week before – same machine. Nice heated blankets – got two of them this time. And I waited for the camera to again clear my face, so I could watch the screens. They had moved them to the left of the machine….and they were a bit further away, but not impossible to see. I could see scattered lit up bits, which I just dismissed as ‘background clutter’….and the scan was mostly dark – which was a good thing! Then the camera reached my mid-section – where I knew my liver and spleen were….and where all this stuff started out…..and there it was….a rather large cluster of lit up bits. Too many to be random….all gathered together in my mid-section. Made a mental note about that, and continued to watch….and the rest of the scan was dark with some ‘clutter’ bits here and there.
After the scan, they wanted me to go right up to the Bone Marrow clinic for my Rituxan…but I requested that a doctor come and explain to me what I had seen on the screen during the scan. Ah…the doctor was not on the floor….and everyone kind of tiptoed around, not talking to me. Finally one of the techs came in….and asked what my concerns were. I told her…the suspicious cluster of lit up bits on the scan. And since they were targeted to zoom in on the CD-20 antigenon the B-cells….was this not concerning? She (and I knew she would) said it was more of a ‘doctor kind of question’. Right… she assured me that Dr. Fratkin would be there for the Zevalin later that day, and could I wait til then? I agreed.
On the the 7th floor….and the infusion room. No worries here, as I knew I would most likely have no reaction to the Rituxan at all. And I was right. I read my book, snacked on my popcorn and bagel chips – my dear husband had lunch….and long about 2 pm, the Rituxan was all done. They called down to the nuclear medicine and let them know I was now done…and they said they were on their way up.
They came in with a rolling cart with all sorts of interesting stuff on it – and we all were ushered off to another room – being radioactive stuff – best to do this by ourselves. First tho….my question….the lit up bits. Dr. Fratkin admitted that they were concerning, but he was hoping it was more that the lit up bits were being moved out of my body. Nope, wasn’t buying that one. But….to me – if they were the ‘bad guy cells’ – it was proof that the Rituxan/Zevalin trial did exactly what it should, and found them and zeroed in on them. And…..the ‘real thing’ I was about to get would for sure get rid of them for good. General consensus was that we were all glad I was getting the Zevalin!
On the rolling cart was a plexi-glass box. Interesting…..the Doc explained that they had discovered that the plexiglass shielded better than metal – and there was less ‘scatter’ of any radioactive particles using it. Amazing! I would have never thought that. The box was neatly labeled “Zevalin Delivery System” – I loved that! The syringe with the Zevalin (the Ytrium90 part) was in one side of the box with an additional plexiglass ring around it – and on the other side was another syringe with plain saline in it. The third side was facing me, and was attached to my port. At that point, it became just like last week – a little bit of the Zevalin….little bit of the saline….back and forth til it was gone. Then he shut off my side, ran some saline into the Zevalin side, and then re-opened my side to put that in….making sure I got every last drop of Zevalin.
After that….I was disconnected from it all….and all the trash went in those bright yellow hazmat bags….and then….and here I thought I’d gone into a time travel back to the ‘end of the world’ movies from the 50s – the doc brought out a gieger counter! And it was all beat up like it had been in use since the 50s! Now that was surreal. Worse….he held the wand over me….and I ticked! Creepy! The amount I was giving off was very minimal…it was more the idea of it than the actuality….but still….
Then – get all ready, shoes on….and off we went home. We did get home several hours earlier than last time….but then we started earlier, and there was no scan afterwards, as the Ytrium90 is invisible to a scanner…
And since then? I was glad I had the prescriptions I had requested…..needed the nausea meds more than I would have thought. Was kind of shakey and feeling wierd that night. Had a few more bouts of nausea, but controlled with the meds….and a bit of pain…just like last week, also well taken care of by the meds.
Now, it’s Sunday….and I’m feeling really good. Could have more energy, but I expected that….and now we watch the blood counts to make sure they don’t tank…..that’s coming up Wednesday, just before we leave for a MOST welcome Thanksgiving celebration with family! I cannot even begin to express how thankful I am this year….for the hand of God that has guided and helped me through this whole thing…..and I know will continue to do so!
Almost there! And I can see that light…..just dancing with sunbeams!
Earlier, I did have another trip to Richmond that I didn’t blog about. It just seemed to me that getting the bone marrow biopsy was not a fun thing, there was not much I could put down in words that would not have been a ‘downer’ – so I decided to just let it go. Suffice it to say – it was necessary to have it done….and it is.
Movin’ right along…. Hit the road early for Richmond this past Tuesday….this was to be a big day! I was hoping to at last get my second opinion on my original diagnosis (it is very important to me to have an accurate one….), and the results of the bone marrow biopsy….and not the least, the ‘trial run’ of my Zevalin treatment.
Got to the hospital right on time….knew the way there by heart now….and to get our parking ticket (they have valet parking!) validated so it costs us nothing. Got ushered into the lab room for my blood to be drawn, and vitals checked. I was surprised to note my blood pressure was 130 over 65…..which is sky-high for me. Guess I was a tad nervous about the coming hours…
Then off to the ‘infusion’ room. Basically a huge room full of recliners for those receiving treatment and those torturous little office chairs that are for the one accompanying them. I always feel so badly that my wonderful husband is forced into that small hard chair for so many hours, while I’m kicked back in this plush recliner! He bears it all with a smile, tho……what an amazing guy! While we waited for the labs to be processed, the doctor managing my case came down to talk….and had my second opinion paperwork in hand.
He prefaced it by saying he had checked, and all this paperwork had been faxed to my local oncologist….hmmmm…..and I never heard a word about it. He stated that even with a second look, they narrowed it down to two possibilities….which is still way more specific than the umbrella ‘b-cell lymphoma’ that I’ve had all this time. So at last….a label…..either splenic and/or marginal zone lymphoma…..not the most common type out there, which had a lot to do with how difficult it was to pin down. This was exactly what he had suspected just from reading about my case….but it meant much to me to have the pathologist’s confirmation of his thoughts. Ok! Now I know….and it will now be figured into everything that comes down the pike after He also gave me a recommendation for a new local oncologist….. got that ball rolling soon as I got home..
The labs came back ok….but just as an ‘in case’ – they had me sign to ok getting a blood transfusion, should that become necessary. Hopefully, I would not, but they wanted the ok ahead of time in order to save time. No problem there…..and then the doctor was off to do his work for the day….and my infusion of Rituxan was ready for me. They gave me the pre-meds – basically the ahead-of-time meds to minimize any reactions that I might have later on…..comforting to know that they are on the job, helping my body to accept the Rituxan.
The Rituxan is amazing stuff….it is targeted monoclonal antibody that only goes after the B-cells in the body….it recognizes them as the ‘bad guys’ and lets your body know that….calling in the body’s own defense system to kill them off and get rid of them. But Zevalin….adds another step to this….it adds a radioactive isotope to the Rituxan that targets a specific antigen…..and kills all the cells in the immediate vicinity of the ‘bad guys’ – very much like a ‘smart bomb’ — sometimes science is almost science-fiction come true, and it is fascinating to me that this is what will put me into “durable” remission…..talking years here….yay! The Rituxan went in very slowly – we were all aware that the first time I had this, I did have a bad reaction…..but after we had passed the one hour mark, I knew it would be clear sailing…and it was!
By 3:00 the Rituxan was about done….and now came step two….the ‘imaging’ dose of I-111. This would show in the coming gamma scan if the radioactive bits were being distributed all over the body…..so that when I got the ‘therapeutic’ dose of the ‘real’ isotope, we’d all know it was going where it was needed…..all over. I got moved to a room by myself for this step….the doctor explaining again that I was not going to be giving off any radiation to those around me than they would receive from the environment….good to know! He had a double syringe to do this….and a timer! It would take 15 minutes of alternating…..a little bit of the isotope….then switch….a little bit of Rituxan….switch back…a little bit of the isotope….and so on. Amazing how long 15 minutes can seem to be when one is waiting for it….. was interesting to see the doc…establishing this rhythm to giving this treatment.
After this…..one more thing to go…..a gamma scan. We arrived down several floors in the hospital to the Nuclear medicine department for this….another of those really skinny hard beds to lay on….but wonderful heated blanket to wrap up in (boy, that felt GOOD!), and directly over my head was a big square camera…..and I assume under me was another….as there were two screens on the edge…giving views 180 degrees different. Then they lowered that camera (after asking if I were claustrophobic) right down to almost touching my nose! That is really getting ‘up close and personal!’ Then all I had to do was be still, as it took the camera 25 minutes to move down my entire body. Once it cleared my head, I could watch the screens and see what the camera saw…..and it was like my body was this invisible container full of these brightly lit bits….like neon snow! I am totally amazed at the science that discovered how to do all this… After the scan, I had to wait just a moment for the doctor to confirm the scan was ok…..he came in to say….yes it was….the isotope went all over just as it should….and we were a ‘go’ for the real thing next Tuesday!!
Whew…..quite the long day in Richmond….got there around 9:30am….and left just after 5:00pm….rush hour gave us the perfect excuse to stop at Cracker Barrel to have a celebratory dinner! Other than being a tad tired, I was feeling good…..and looking forward to next week. So THIS day was just chock full of sunbeams……lighting up that tunnel’s end…..next Tuesday!! I am in awe of just how awesome our God is….!
More next week…..
Last Thursday, my dear hubby and I made the trek to Richmond for the consult with the doctor from the Nuclear Medicine department. Early start to the day, as we had to be there at 9:30 am….and it’s just about a two hour trip. By 7 am, we had filled the van with gas, hit the bank for some cash, and stopped at Hardees for their most excellent bacon, egg and cheese biscuit, and were on the road. For once, the HOV lane proved to be a Godsend, as traffic was awful! We cruised up on that lane and sailed past all the traffic jams, and made it thru the tunnel before the traffic caught up….sweet!
Funny about the parking at the Massey Cancer Center – last time we were sent clear around to the other side of the hospital – which was the wrong side for where we were going. This time, we decided to park at the main hospital entrance – which turned out to be wrong too….we needed the middle! Strange to think that there are so many different parking entrances! Ah, well, we needed that brisk morning walk! We did get kind of lost in the lobby, trying to find where we should go…..and a very nice gentleman walked up, asked where we needed to go, and then, instead of just telling us how to get there, he took us there! Every single person we have met on staff at Massey has been amazingly considerate and helpful – a refreshing change!
We didn’t have to wait too long to get checked in and get this week’s flavor of wrist band (green). Then we moved on to the hallway of the Nuclear Medicine department, and waited outside the ‘consultation room’. This is always when I wished I had thought to bring along a book…makes the waiting times go faster. I’ll be taking one next time!
Then we met Dr. Fratkin – who struck me as a very elegant, old-school gentleman. He ushered us into the room, and proceeded to explain the process of getting the Zevalin treatment again – because the protocol had changed. The very first step is to have a bone marrow biopsy – for if (and they don’t expect any) there is cancer there – it has to be below a certain percentage, or the treatment is put off. The second step is a trial run. Basically, I will be getting an infusion of Rituxan, which was the ‘immunological’ part of my chemotherapy I received for those 6 months. He assured me that even though I had had a bad reaction to this before, the fact that it has now been months since I received it, there would most likely NOT be any reaction now….one does not go back to being in the ‘I’ve never had this before’ state. Good news for me! When the Rituxan has been running and has perhaps 10 or 15 minutes left, then they will add the radioactive isotope to the mix. For the trial run, it will be a kind that they can see on subsequent scans, but different than the one I will receive for the ‘real thing’. I would receive this on a Tuesday. Here’s where the change came in…..they had been doing the scans the day after the infusion, which would have meant staying in Richmond overnight – and two days lost work for my husband ….but now (partly for this very reason), they have found that doing the subsequent scans just before the ‘real thing’ was of equal value as doing them right away, they now don’t require you to stay over, and just do it before beginning the ‘real thing’.
I will return to Richmond the week after this ‘trial run’ – also on a Tuesday – and receive the therapeutic doses of Rituxan and Zevalin. Each of these treatments will take most of a day…what with full body scans and the infusion itself….definitely days to bring a good book to read! Maybe some crocheting too… Once the infusion is done, I can go home….and I am DONE!
The doctor says (how creepy is this?) I will be very slightly radioactive for a little while, until my body completely flushes it out of my system, along with any and all of the ‘bad guy’ cells that may be lurking there. No huge precautions to take, other than maybe stay away from close crowded places for a few days. He emphasized that I am not giving off anything close to dangerous levels, more like the levels we receive every day just from walking around outside in the sunshine – but it is out of an abundance of caution….good for me and for those around me. They expect I will have NO side effects, there will be none of the things associated with radiation – no hair loss, no anything…woohoo! The only thing that probably will happen is that at some point in the following 12 weeks, my blood counts may crash….so I will be having a blood count done every week for those 12 weeks….to keep tabs, and to deal with it if it happens.
All in all, what I see is God literally showering down flood of sunbeams with this treatment….not a raindrop in sight!
This past week my hubby and I made the trip to the Massey Cancer Center in Richmond. According to my oncologist, who had arranged the appointment, ‘if you want a cure, this is your only shot”. She was referring to a Stem Cell Transplant. For my part, I was full of questions, and hoping that this trip would provide some answers.
We were directed to the opposite side of the hospital, thanks to an inattentive parking attendant, and ended up having to walk what seemed like forever to get back to the Bone Marrow Transplant clinic. (Stem cell transplant and bone marrow transplant are pretty much interchangeable terms – the only difference being where the stem cells come from – the blood or bone marrow). We did give up trying to figure out how we could take an elevator to the 2nd floor on that side of the hospital, and end up at the other end on the 6th floor – that was pretty interesting! Another short hop up to the 7th floor and we were at the clinic.
Looked like waiting rooms everywhere…semi-comfortable chairs, a TV on the wall…rack of magazines. The receptionist was very nice (in fact ALL the staff there were very nice) – got me checked in, and did all the preliminary stuff – even though we were a full hour early. We were unsure of the route, and thus how long it would really take – so we allotted extra time. Next time we’ll know better.
Had a longish chat with the Nurse-practitioner first – she went over the paperwork I had filled out before I came, and got more details about me, my health history and general thoughts on why I was there. I did tell her I had two pages of questions that I was hoping to get answered – she never even blinked – just said that she hoped that before I left, I’d have those answers.
Then came a looooong wait in the conference room, waiting for the doctor. After a half-hour, I was getting fidgety…wondering what on earth was taking so long. At last, he arrived – and was not the doctor I had been told I’d be seeing. He explained that he and the other doctor had discussed my case, and they decided that he would be the better one to tell and explain the options I could consider. He then got out a pile of paper, and told me he was going to take notes as he talked, and they were for me to take home. I could have hugged him for that!
We spent over an hour with him – and he explained Lymphoma to me….and the progression of how they progressed from just a few definitions of sub-types to the myriad that there are now. I understood everything he said, from all the reading I have done on my own, and from the posting of others on several forums I am on. He told me that he was 90% certain that the type of Lymphoma I have is “Marginal Zone” – and he drew me a pictures. He then said they would be sending for all my original pathology slides from the original biopsies, because, as he put it “we check everyone’s work” – but he was pretty sure that his feeling will be confirmed when the second look was done. Whew! Two big questions answered! Now I have a ‘name’ for my lymphoma, and I will have my second opinion on it. The visit was already a success in my book, just for that!
He then went into the first option – the Stem Cell Transplant. I had read a lot about these, but it really helped for him to tell me, and to let me know how much time would have to be spent in Richmond with this (all together – talking about 8 weeks – part as outpatient, part in the hospital). This I pretty much knew. I was heartened to find that all the info he was giving us meshed perfectly with all the reading I had been doing. I brought up the ‘insurance problem’. We are, yet again, losing our Medicare Advantage health insurance at the end of the year. Cigna is going out of the Medicare Advantage business. This year a double whammy, as we are also losing our Part D prescription coverage insurance. Wonderful. And there are not many choices out there any more. I have found two. Last year when we went thru this, there was about 20. But I digress! He said they have an entire staff devoted just to dealing with insurance companies to get these procedures covered as much as possible. I would have able help with that end.
He addressed the question I had about me being in remission (we think), and could we just not let sleeping dogs lie…so to speak? He said we ‘could’ – but……the presence of the cancer cells in the hernia was troubling…perhaps the lymphoma was getting ready to (as he put it) ‘rear its ugly head’. Add to that, if I do relapse ( and yes, it WILL come back….just a question of when), it probably will be sooner than later – and the chemo that was so effective the first time around would not be again. They would have to ramp it up to deal with the new recurrance. Then he said we would get into the treatment being so harsh that it would impact my quality of life more and more. He also said that being in remission could be the very best time to try to knock the lymphoma out of the park for a long time. Another question answered.
For the transplant – I was looking at: 2 weeks or so outpatient to collect enough stem cells to do the transplant. They use your own cells. So the name ‘transplant’ is really a misnomer, and they are taking them from you, then giving them back later. After this….around 3 weeks as an inpatient in the hospital, while they give chemo to take down my immune system, and then let the new stem cells build up a new one. Depending on timing…about 3 weeks – then there would be another 2 or so weeks waiting for the blood counts to reach a high enough level to allow me to go home.
Then – a total surprise – a second option – as he knew from all our earlier talking this just might not be a ‘possible’ solution. He suggested an alternative – Zevalin. Ok…I had read the name, but knew nothing about what it was. He then went back to drawing and making notes – first about how Rituxan works – which I knew. I had already had this – I knew that it would target the ‘bad’ cells and flag them, then signal my own body to kill them off and get rid of them. He told me that they had the idea to go a step further – to not count on the body to do this ‘killing off’ of the cells – for it does it not so well, or consistently as it could be. Adding a radioactive isotope to the mix would do it. The Rituxan would do it’s targeting….then the radioactive bits attached to it would kill off all those, and all the adjacent ‘bad’ cells that might be lurking. He explained it so well – and it made so much sense! With this treatment – I was looking at 4 days – all outpatient – and I’d be done! One trip to do a bone marrow biopsy to make sure everything is in remission there. One day for a ‘test’ infusion of the treatment, this would be an overnighter, as I ‘d have to be scanned the next morning – the scan would show that the infusion was going where it was supposed to. Then, assuming that was ok….a week later, go back, get the treatment, and I’m done.
Add to that…..that if….down the road, it became necessary to re-do it – it would be just as effective as the first time. And to top all of that….I could be done with all of it before Thanksgiving, so eliminating one insurance issue…..but, if it turns out the insurance refuses to cover it – the company that makes the drug will pick up the tab. And the prospect of a nice loooooooong remission – or as he put it….’durable’ remission. I like the sound of that.
So….we went there thinking about one thing….and ended up on a totally different road….but one that ‘fits’ where we are, and what we can do. And I won’t really ‘glow in the dark’ lol!
Now waiting to hear from Richmond to get this thing rolling…..and feeling so much better about how this cancer is going to be ‘beat down and destroyed’ for years to come. Sunbeams indeed! And how much I think and thank God for directing us on this path that turned into the one I think He had in mind.
It has taken me a while to absorb what all is going on/not going on with me….so have spent a bunch of time doing more research…and neglecting to post.
First – the results of the PET scan showed no malignant activity anywhere in my body. This is GOOD news, yes?! I was glad to read that, but then it got tempered by a comment from my oncologist that she was ‘surprised’ that the test was clear. Hmmm… have to admit it really bothers me that the one test is in direct contradiction to the other. So….am I or am I not in remission? Hoping so, but it’s not really clear. PET scans sometimes do not show activity from an indolent lymphoma (which I ‘think’ I have) – and so that muddies up the waters. Then there was the oncologist’s insistence on setting up an appointment with the Massey Cancer Center in Richmond to ‘start the process’ of getting prepped for a bone marrow/stem cell transplant.
And here is where confusion turned to frustration, and more research….and a couple of decisions. From my research, going straight from a very good response to chemotherapy to a SCT was a bit odd. On the one hand, good to do when one is in remission – and yes, it is the ‘only shot at a cure’ – as the oncologist kept repeating……but it comes with no guarantee, and costs a very large fortune. Just doesn’t sit well with me….there are plenty of other therapies that are not so intense as destroying one’s immune system and then replacing it with a ‘cancer-free’ one.
I then tried to get out of my oncologist the ‘why’ of the fact that I still don’t know what type of lymphoma I have…..b-cell is a general classification, and there are a slew of sub-types. Those sub-types have a lot to do with when-what-how the lymphoma is treated. Not for use right this moment – but looking ahead – it is a possibility – and I refuse to be blindsided again simply because I don’t know. This is where the oncologist and I had a major disagreement. She shrugged it off with ‘oh, that’s the pathologist’s job’. Ok….the pathologist didn’t DO his job, so why did you not push further? Another shrug – and a comment ‘for her purposes, it made no difference in the treatment she was going to use’. Ok….again – for first line treatment, maybe not. But to have incomplete information, and not even being offered an attempt to find out more. Sorry…doesn’t cut it. We will be parting company. I could see she was very uncomfortable with all my questions….and even said ‘you want answers, and I don’t have them’. Again….wrong answer. It is my body and I want ALL the information I can get….and if she won’t/can’t provide that, I will find someone who will.
So….I agreed to go to Richmond. It will be good to have the info on a SCT (stem cell transplant – and these are adult stem cells – I would never accept anything other than that). It will also be a perfect opportunity to ask the doctors at the Massey Cancer Center why I don’t have a definitive diagnosis, and ask for a second opinion on it. I have all the reports – and they have the power to get the original slides. I will also be asking them for recommendations for some other haemotologist/oncologists close to where I live….
Meantime, I’m doing more research – this time for insurance. Wonderful to know that we will yet again, be losing our Medicare Advantage insurance at the end of the year…that makes two companies in two years. Almost afraid to see if there will be any companies left come next year…oh, yeah, this new health care bill is just great (and that is with several tons of sarcasm – and don’t get me started on that one). Anyway – I called to simply find out IF a transplant is covered by my insurance….and was asked ‘do you have the procedure code for that?’ Now why would I? So….went googling for the Medicare Coverage Determinations Manual …..and found it. Found out that a allogenic (somebody else’s cells) transplant is NOT covered. An augologous (my own cells) transplant IS covered, but only for ‘resistant lymphoma with poor prognostic features after initial response’. Somehow I don’t put myself in that category – so why did my oncologist think I should get going on it? Does she know something I don’t – shame on her if so. Maybe she just doesn’t know the requirements….and leaving it up to them to reject me over that.
If my plans for the Richmond visit don’t work out as I have envisioned….I have an appointment with my primary doctor the day after this visit….at which time I will ask for a referral to another haemotologist/oncologist (and yeah…I’ve researched them too for this area)…and get in to a new doc, and get that second opinion so I will finally KNOW what type of lymphoma I have….and the information to make more intelligent decisions if/when need be…
So….maybe some Raindrops around here….but God still sprinkling around those ‘determined’ and ‘hopeful’ Sunbeams….and the light wins!! Trusting God to walk me down this path!
After getting my good news last July 16 about ‘no evidence of disease’ (NED) in my bone marrow biopsy…..it was time to turn attention to the little – but painful – hernia that showed up last April. Decided to do nothing about it then because it was enough to deal with getting thru the chemo.
So…now that the chemo was done, the little critter decided to hurt just way too much for its size….and off to the doctor I went. She made the appointment for me with the surgeon – the same one who put in my power port for chemo – and after seeing him and taking a look at the hernia on my CAT scan, it was decided to go ahead and repair it. As he said, it was not going to go away, and better to deal with it while it was small, and get rid of the pain at the same time. Well and good!
Had the surgery on August 18….outpatient, and was home the same afternoon. Was a bit surprised a day or so later to realize I had a whole row of staples in my stomach! I didn’t know they still did that! I guess I figured it would be the ‘disappearing’ kind of stitches. I kept forgetting to call the surgeon’s office to go have them taken out…..til about 9 days later. The poor receptionist about had an attack that I had waited so long….but hey – no one said anything to me about it at all, so it wasn’t large on my radar!
Went in that same day…..and the doc took me right in (when he came in the office front door and saw us sitting there) – took out the staples in about 10 seconds…..but then he hesitated….saying he was trying to make sense of the pathology report he had from the surgery. Huh? Report? I didn’t know he had sent anything in for testing (guess it is SOP, tho), and when I looked over at the file, all I could see was the very LARGE print at the bottom….saying NOTE: MALIGNANCY. I was stunned. This was absolutely the last thing I expected to see or hear. But there it was…..the surgeon showed me the report, and it said that malignant b-cells had been detected in the tissue sent in. Whew…
Got right on the phone….made an appointment with the oncologist…and (thank You, God) there just happened to be a cancellation the very next day, so I could get right in. She looked at the report…..and we discussed a few options….and decided to schedule a PET scan. This should show any abnormal cell activity anywhere….so hopefully would be a good indicator of trouble….if there were any…
Today was the scan….I had forgotten how bad the ‘contrast’ tastes…really bad citrus….worse because it was not cold…shudder. I got it down, but it was ‘iffy’ in a few spots… then back to the tiny waiting room – alone – this time they wouldn’t allow my hubby to come back with me….so there I was in back…alone, and he in the waiting room ….alone. Ah well. The tech started an IV, and after a bit came in and got out the oversize lead container to put the nice radioactive stuff in my veins…don’t like it….but if it gives clear results, will worth it. Then the boring part…..waiting for the stuff to circulate in my body….and be quiet about it…even moving around would interfere with it. Finally….the scan. And another glass of the yucky contrast…I had also forgotten that it takes almost a half hour to make the scan….many many photos…being very still inside the big doughnut…
Finally! Done….and now I could eat! Hubby was willing to stop and get me whatever fast food I might like….but what I really wanted was toast with cinnamon sugar on it…..and boy, it was good! And a good hot cup of coffee…yum.
Results are supposed to be to the doctor by Thursday….I’ll be calling tomorrow to see if I can get an appointment before the scheduled one next Tuesday….no point at all in waiting around….I want to know what it says…. I’ll keep y’all posted….
This lesson was brought home to me yet again on Monday….I was out in my studio, playing with jewelry…when the phone rang.
It was my oncologist’s office, calling to remind me that I had an appointment on Tuesday…..say what? I said…no I don’t….and Robin (not her real name) said…yes, you do. AND….you are scheduled to have an Aranesp shot on Thursday….and I was going to put them together to save you a co-pay. My mind is now racing, trying to remember if I had done this or not. My mind said No..you did not.
Back to Robin on the phone…..I questioned two things….why did I have another appointment with the Doctor, when I just saw her last week and got the good news that the Lymphoma was in complete remission? And….why would I be getting an Aranesp shot, when I am no longer getting chemo?
Kudos to Robin, who then went back to see when and why the appointments had been made…..and then all became clear. After each chemo session, appointments are automatically generated for a visit with the Doctor and any other shots/tests you might need. Ok…that may be….but my last Chemo was June 15…..and this is (was) July 26….seems a little ‘off’. To her credit, Robin simply waited for my decision on what to do with these appointments.
I told her….cancel the Doctor appointment – I just saw her, and if a reason for adding an appointment wasn’t urgent and coming from new concerns, it was unnecessary. I also told her I was opting out of getting the Aranesp shot….from my research (you CANNOT have too much information about treatment/drugs that are being considered for your treatment), there were absolute prohibitions (from the drug manufacturer’s site) on giving this drug for any reason other than depressed blood counts DUE to chemotherapy. There are serious side effects to this drug – which very well may be offset for the good it does during chemo…..but that is no longer me. Robin then told me I was also scheduled for another Aranesp shot first week of August. I opted out of that one too.
The lessons I have learned in the last seven months have served me well I think….question everything, research what you can, ask for clarification on what you don’t understand…..if you don’t do it, no one else will!
So…now I’m back to just having a port flush on August 13 (something else new….as I’m no longer getting chemo on a regular schedule, the port needs to be kept clear), and an appointment with the Doctor in September for a progress report, and scheduling of a PET scan to monitor my progress.