tag:blogger.com,1999:blog-17503985885812426102024-02-20T21:06:32.355-06:00Jill's SpaceI was diagnosed with breast cancer in 12/04. I did lots of chemo to prevent it's return. In 6/06 I was told that I had a new primary tumor. I was tested and found out that I was BRCA 1+. I had surgery and did more preventative chemo that ended in 1/07. In 2/07 I was told that I had lung mets. At this time my cancer seems to be chemo resistant. I had a Stem Cell Transplant through a clinical trial in 8/07. I had some liver mets show up in 2/08.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.comBlogger76125tag:blogger.com,1999:blog-1750398588581242610.post-20417411236592500162008-04-23T15:17:00.004-05:002008-04-23T15:29:25.670-05:00They would never admit me just for a nosebleed<div align="right"></div><div align="right"></div><div align="right">I am back in the hospital again. I am at North Memorial this time. Last night I had a bloody nose that would not stop so after 3 hours I went to the Emergency Room. This is from the blood thinners they have me on. They have given me bags of Plasma and vitamin K to reverse the blood thinner. I don't even want to talk about the things they did or left in my nose. The bleeding still hasn't totally stopped. They are also going to give me a unit of blood. My hemoglobin has dropped to 7 now that I have lost so much blood. I should get out Thursday or Friday. </div>Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-52851736998296757302008-04-14T15:29:00.001-05:002008-04-23T15:36:43.684-05:00Running out of optionsI met with my oncologist today. We went over my latest scan and the lung tumors are still growing. The Gemzar didn't do anything. The largest tumor was 5cm two months ago and now it is 5.5 cm. I think thats growing fast - the doc says it really isn't fast. We can try more chemo....radiation or surgery really isn't an option. We talked about Abraxane. I am going to think about it for a few weeks. I just want to feel good for a little bit.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-15548393850517038122008-04-11T22:51:00.002-05:002008-04-23T15:55:56.735-05:00I had the Vena Cava filter put in today. The procedure only took 20 minutes, but we were at the hospital for 5 hours. There was no pain during or after, so I'm not going to complain.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-43207091069854711152008-04-09T22:53:00.003-05:002008-04-09T23:11:21.157-05:00Ultrasound reveals large clotI had the ultrasound on my leg today. The blood clot goes from my knee to groin. It sounds huge, but I guess this is not unusual. My doctor thinks I should get a <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Vena</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Cava</span> filter put in. They would insert the filter above the clot, so it could catch anything that breaks off. I already have two pieces in my lungs already, so it's a good idea. <br /><br />I am going to call in the morning to schedule. My doctor thinks they might be able to get me in Friday. I am only mildly terrified to have this done. You are awake for the procedure, and they access the vein through your groin. In the meantime every one is telling me to "take it easy".Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-64736669360014087402008-04-07T16:27:00.002-05:002008-04-07T16:49:32.462-05:00New problem found on my CT scanI went in this afternoon for a regular re staging scan. The phone was already ringing when we got home. It was my oncologist calling - that can't be good. He said the radiologist found a problem on the scan. I have a blood clot in my lung. It turns out is also related to my puffy foot. He asked me if I was having pain anywhere and I told his about the back of my knee hurting for awhile(I thought it was related to my weak leg muscles) and the puffy foot that showed up Sunday. He said that it is likely the original clot is located there and some broke off and ended up in my lung. The puffy foot would be lymphdema caused by the clot pushing on the lymph nodes. They are going to do an ultrasound to confirm this.<br /><br />The treatment is to be on blood thinners (probably forever!!). I will be giving myself injections twice a day, so the pills have time to start working(5 days). He also said I should avoid using that leg too much for a couple of days. I almost afraid to move. I'm not sure if I should go to work tommorow. I actually feel good.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-86866744046015742102008-04-06T13:50:00.002-05:002008-04-07T17:16:57.324-05:00Puffy footI have a puffy foot. I was watching TV and glanced down at my foot and top was puffed up about an inch. It doesn't hurt. I think it is most likely lymphodema in my leg. Great another medical problem.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-26387563870587965742008-04-02T21:02:00.003-05:002008-04-03T22:07:24.596-05:00I finally got my red cells today. I was at the clinic all day. I was able to get a room with a bed, so I slept all day. It was great - an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">uninterrupted</span> nap. I feel better already. I was so weak this morning that I could barely walk from the car to the clinic. It's a good thing that I had someone to drive me.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-74918688441899076082008-03-31T18:51:00.000-05:002008-04-03T22:06:31.901-05:00no chemo againI went in for chemo today and found out that my platelets were too low. My hemoglobin is down to 7.1 even with the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Arenesp</span> shot. I am so tired. They finally agreed to give me some red cells. I have to go over to Regions for those. They cannot get me in until Wednesday. That's terrible.<br /><br />I am still having <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">diarrhea</span> and can't figure out the cause. I have <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Immodium</span> for breakfast and then don't eat or drink <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">anything</span> until I get home. The docs don't think it's <span class="blsp-spelling-error" id="SPELLING_ERROR_4">GVHD</span>.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-10573747080582419852008-03-17T13:41:00.001-05:002008-03-18T02:46:38.135-05:00More chemoI started my second cycle of <span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Gemzar</span></span> today. My first cycle was not too successful. I only had two of the three doses because my blood counts were <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">knocked</span> down so low. Today they did give me an <span class="blsp-spelling-error" id="SPELLING_ERROR_2"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Aranesp</span></span> shot to try to keep my red count up. I had a scan at the end of Feb and it show the <span class="blsp-spelling-error" id="SPELLING_ERROR_3"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">mets</span></span> are still growing (by <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">millimeters</span>). This scan was required by the study. I will be scanned in early April to see if the <span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">Gemzar</span></span> is doing anything.<br /><br />I asked the doc what drug he thought we should try next if <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Gemzar</span> doesn't work. He did not have a definite answer - maybe <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Abraxane</span>. I'm not sure what I think would be best either. I think I have had like 11 different drugs/combos and none have worked. He did mention the option of stopping treatment - I'm not sure if I'm ready for that yet.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-60032628887161300732008-03-14T17:47:00.003-05:002008-03-18T06:30:51.397-05:00CMV is negative!I just got the news that my <span class="blsp-spelling-error" id="SPELLING_ERROR_0">CMV</span> is negative! I can stop taking the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Ganciclovir</span>. The <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Ganciclovir</span> is is hard on the blood counts so in combination with the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Gemzar</span> is was not good. I hoping that now that I'm almost <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">off the</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Cyclosporine</span> these <span class="blsp-spelling-error" id="SPELLING_ERROR_6">CMV</span> problems will stop.<br /><br />I have actually been feeling great this week. I worked more than 40 hours which helped a bit with the time I had to take off last week. I think tapering off the Cyclosporine is really helping and when my CMV level goes up I feel crappy also.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com1tag:blogger.com,1999:blog-1750398588581242610.post-24632756912714406242008-03-04T18:23:00.002-06:002008-03-18T02:41:58.466-05:00Home again!I was discharged today. They are giving 5 more days of oral antibiotics although the tests did not show anything and I do not have pneumonia. I was released just in time to rush over for mt CT scan at the speciality center. It took longer than usual, so I did not make it into work today. I shouldn't have a problem making it there <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">tomorrow</span>.<br /><br />I had some real crappy care in the hospital. They had stopped the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Budesonide </span>and claimed an increased dose of the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">hydro cortisone</span> was the reason. After I had been in the hospital for a couple days the pharmacist came to visit and said the only reason the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Budesonide</span> was stopped is that they did not have that drug available at the hospital (what!!) so he had me take my own for the rest of the time that I was there.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-19299773322162307742008-03-03T14:20:00.000-06:002008-03-18T02:21:35.103-05:00Still in the hospitalI'm feeling better today. Nothing has turned up on the tests/cultures. I was finally able to give a stool sample this morning, so they will run that today. I haven't seen my labs - they say they are "ok" regarding the liver tests. The Internal medicine doc thought he saw some pneumonia on my CT, but the ID doc said no that it was some fluid that I have on the left side from the mets. I guess we will see what the radiologist says.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-36423801463747299582008-03-02T14:18:00.000-06:002008-03-18T02:19:35.988-05:00Back in the hospitalI was admitted to Regions yesterday with a 103 fever. They are running tests, but haven't found anything yet. The fever went away with tylenol. I am on three different antibiotics.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-29226155171528127772008-02-29T13:51:00.002-06:002008-03-18T01:56:36.698-05:00This CMV will not go awayMy CMV level has been low positive for the past three weeks. That might explain some the diarrhea issues that I have been having. They are going to put me back on the Ganciclovir for at least two weeks. The good thing is that I can do it myself at home. The bad thing is the cost - my insurance only pays 80 percent and the drug is expensive and the drug is rough on my blood counts (as will be the Gemzar).Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-24459031782228448652008-02-19T18:37:00.002-06:002008-03-18T02:40:57.863-05:00My adrenal glands are not workingThe test results came back today and my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Adrenal</span> glands are not working. This does explain the fatigue - or some of the fatigue that I am having. They have put me on <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Hydrocortisone</span>. This isn't a high dose so I shouldn't have any bad side effects. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Unfortunately</span> there is no was to know how long I will have to be on this and if my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">Adrenal</span> lands will start working again. It <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">was</span> due to the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Prednisone</span> that they stopped working.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-59558988178398073002008-02-18T14:04:00.002-06:002008-03-18T02:08:40.309-05:00Started Gemzar todayI started chemo again. We are trying <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Gemzar</span> alone. It is possible that now that I have have the transplant my cancer may respond to this drug. In 2006 I took <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Gemzar</span> with <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Navelbine</span>. It was tough on my blood counts and took me 6 month to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">get through</span> 4 cycles. It was right after this that I had a routine scan and my lung <span class="blsp-spelling-error" id="SPELLING_ERROR_4">mets</span> were found - so we don't think it worked the first time. We will try two cycles and re scan to see if it did anything. The people at NIH/<span class="blsp-spelling-error" id="SPELLING_ERROR_5">NCI</span> have seen some positive response with this drug post transplant.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-85833036251179764522008-01-03T19:10:00.003-06:002008-03-18T02:15:19.371-05:00slight fever todayI had a slight fever today 101 - 102. I called the doctor this morning, but it took several hours (and an email to my doc) to get a response. I have a very mild headache. I had a little bit of diarrhea early this morning. I went in for my CT scan at 1:30pm at the specialty center in St. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Paul</span>. They were then able to get me in to see a doc in St. Paul. My fever was gone by the time that I got there (3pm). They looked me over and sent me home. All these medical appointments are getting annoying.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-21517310437233759212007-12-14T13:39:00.000-06:002008-03-18T01:41:22.032-05:00Back home againI got home Thursday night. I don't have to go back out there until the last week in January. We are going to try to get all of my labs and one CT scan done from here before then. There is a question about how accurate the lab here is in testing the drug levels in my blood and my CMV levels so we are going to have both labs do them for a couple of weeks and see if they are the same.<br />I am feeling much better. I am done with the antibiotics and should be off the antiviral in the a couple of days. I met with the Rehabilitation doc and physical therapist at NIH. It turns out that the muscle weakness that I am having is actually in my hips - especially the left side. I guess the Prednisone can really affect your shoulders and hips. The gave me some exercises to do and some energy conservation tips. One of the recommendations is to lay down for an hour each day to rest (Margaret - is my bed ready? I think it will fit in my office) The transplant team is excited that I'm going back to work on Monday. They think the sooner the better even though I will probably get some kind of crud at work. Flu season doesn't peak until Feb or March, so maybe I will be ok for awhile. It's kind of frustrating that I can't have any immunizations. The live vaccines would be harmful and the other vaccines would be ineffective.<br />It looks like I will probably start some chemo when I go back in January. I should be off the steroids or close by then. They have used some specific chemos on transplant patients that have had the result of jump starting the immune system to fight the tumor.The chemo itself can also be good. Since I have been on the steroids I am not getting a very good response. The other option is to have some Donor Lymphocyte infusions (these were taken with my brother's original donation). The risk is that it could cause GVHD (the skin and gut stuff that I have finally recovered from). We will make a decision after my next CT scan in early January. I better enjoy the little hair that I have while I can.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-64817278426425282022007-12-11T18:57:00.000-06:002008-03-18T01:58:23.418-05:00Testing at NIHI had a full day of testing on Monday. Early this morning they called to tell me that my doctor would be out sick and I could have the day off. I will be seeing the doctor tomorrow after my bone marrow biopsy (looking forward to that). I was able to talk to the infectious disease doc on Monday. He looked at my CT scan and said that based on how the pneumonia is healing it was bacterial. That is good news because the antibiotics are working and we don't want a viral pneumonia. I am feeling a lot better due to the antibiotics and my CMV level has also dropped enough for my drug dosage to be cut in half.<br />The trip out here was exhausting. Dulles is a huge airport. By the time I made it to the baggage claim (I took a couple of breaks) everyone was gone and just my suitcase was on the turnstyle. Somedays I feel like an old lady.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-45721952139409715622007-12-06T19:59:00.001-06:002008-03-18T02:00:24.762-05:00Lounging at home<p>I have been spending the week at home napping and watching TV. I feel pretty good as long as I am sitting still. I get really tired when I go out or do a lot of walking. I'm still trying to recover from all the muscle weakness in my legs caused by the steroids. I am not having any symptoms from the pneumonia so that is probably getting better. It sounds like they caught it early.<br />I am going back to Bethesda on Sunday. I am flying out alone and renting a car. I really hope I have more energy by then. I should be back on Thursday. I am planning on going back to work on Monday the 17<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span>. Now that I have a return date, I can think of a million things I need to do there. I am going to try to work only part time for at least a couple of weeks.<br /></p>Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-43091875382787831762007-12-03T23:01:00.000-06:002008-03-18T02:01:52.726-05:00Home from the hospitalI made it home from the hospital tonight. I have a mild case of pneumonia. They are not sure if the pneumonia is CMV related or if it is bacterial, so they are treating both possibilities. I haven't had a fever since Saturday. I would much rather be hospitalized in Maryland than here. The doctors are more knowledgeable and the living conditions are much nicer. I was finally able to convince the docs here to call and talk to my docs at NIH.<br />I missed my flight back to Bethesda on Sunday. They have rescheduled all of my appointments for next week, so I will be flying back on Sunday.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-24594815603737173162007-11-30T09:29:00.000-06:002008-03-18T02:29:58.519-05:00Going back to the hospitalI'm on my way back to the hospital to be admitted. My fever is 103 again and my CMV level just came back elevated. I'm not sure if Regions has any internet access, but I wil update when I can.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-44854598397038619012007-11-28T20:30:00.000-06:002008-03-18T02:31:08.482-05:00HomeI just got home from the hospital. I had a fever of 103 yesterday and after spending hours in the ER they decided to admit me. Nothing has shown up on the tests that they have done yet. I am still having fevers, but I they finally decided that keeping me in the hospital was only exposing me to more chances of infection.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-86628364131785529732007-11-21T16:31:00.000-06:002008-03-18T02:32:41.039-05:00Finally home!!We made it home early this morning. The drive was not too bad. I was at the hospital Tuesday until noon and needed to be back here today for an 11am appointment with my doctor, so we drove straight through. I also had to meet with the home infusion nurse for 3 hours this afternoon! Now I need a nap.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com0tag:blogger.com,1999:blog-1750398588581242610.post-71906511102998117592007-07-07T22:24:00.000-05:002007-07-09T10:35:59.053-05:00Here is the link for my caringbridge site:<br /><br /><a href="http://www.caringbridge.org/visit/jilltollefson">www.caringbridge.org/visit/jilltollefson</a><br /><br />My plan is to keep that site going while I am taking time off from work. There are lots of inquiring minds there.Jillhttp://www.blogger.com/profile/02650580285791102327noreply@blogger.com1