iowagirl

I’m HOME!!!! The biopsy of my bone marrow is done. Nothing more to do now except to wait for the results. Unfortunately, that will be 2-3 days.

Just in case anyone reading this ever has to have a bone marrow biopsy, I thought I would post the experience here to allay some fears and give some advice:

First, the hematologist (who I thought would be the one doing the biopsy told us that at Mayo, they have a “team” who do 2000-3000 of them per year and they are “slick” at what they do. He said, that we didn’t want him to do it…that he can do it, but not frequently enough to be as good as the “team”. Quote: “You don’t want a part -timer doing this.”

So, it is very important with a bone marrow biopsy that it is done by someone who does a LOT of them..

We arrived at the center in the Gonda Bldg at Mayo where they do such procedures at 12:45 after not eating or drinking a number of hours. They did all the usual checks of BP, temp, and questions, question, questions to plug into the computer. Then, there was the IV. The nurse looked and decided against making the attempt herself since I told her that there have been difficulties in the past. The guy, a nurse, who was to do the procedure (yes, a nurse….obviously well-trained in doing this) came in and put in the IV.

I thought that I would be changing into a “gown” but no, I was to leave on my street clothes. Remarkable.

I was sitting in a chair with siderails..which had the capability to go into a full recline. I was wheeled in that chair to the procedure room, that was very small. It was just the nurse doing the procedure and his anesthesia assistant who set up the sedation and handled that part. After about 5-10 min of getting tubing in better places they proceded to get me in the right position.

I was asked to lie on my right side with my back up to the side rail (after I was put into a full recline). Once they had me just right…they adjusted the waist band of my jeans to reveal the upper part of the hip bone. ..The sedation began gradually, to see how much was needed to get me to the point that I did not talk back to them (good luck on that).

The whole procedure was no more than about 20 min., and I was awake before leaving the procedure room. I was then wheeled back to the holding /recovery room…back where I started…..where my husband was waiting. I stayed there about an hour….ate some toast with jam and drank some pop…and was dismissed to go home. WOW!!!

The procedure itself involved a small, sixteenth of an inch cut in the skin over the hipbone. They also numbed the area with a local anesthetic. They insert first a needle into that cut and push it into the bone where they aspirate bone marrow. After that, they with draw that needle and then use another kind of hollow needle to get a core type biopsy of the bone marrow, which will be looked at to see the bone marrow as it is in my bone….not all mixed up as it is in an aspiration.

They put a pressure bandage over the area where the cut was made….which will stay on 24 hours. At that time, it comes off and IF I want to put a bandaid on it, I can. They said it may ooze slightly for a while, so I might want to put a bandaid on. However, I am allergic to most adhesives that are on bandages and bandaids. I’m going to have a hard enough time with the bandage they already put on it. The allergy causes really bad burning and can actually blister my skin. Obviously, most people don’t have that problem. I may just wear old clothes and not worry about it after I take off their bandage. we’ll see. Some areas of my body are more sensitive to the adhesive than others.

So, upon dismissal, we first went to a BBQ place for late lunch, since I hadn’t eaten for almost 24 hours. I had a three hour ride home from Mayo. By the time we got home, I am starting to feel a deep discomfort in the area of the biopsy. They told me that would be about what I’d feel for about 7 days. I’ve read 2-3 days…..and some people had nothing. I am to take Tylenol or use an ice pack if it bothers a lot. Also, I’m to watch for a temp over 100.4 (indicating an infection). However, while there are always possibilities of infection and bleeding, they said that was rarely ever something that happened. Since I am so far away….if there is bleeding or temperature…I am to go to the local hospital.

So, that is it. The words, “Bone Marrow Biopsy” conjures up thoughts of a procedure that must be horribly painful. I freely admit that Is where my head was before today. I’m so glad to report that it doesn’t have to be the case. That said, the hematologist made it very clear to us that having it done by someone who did these biopsies every day and many, many of them was very important for more comfort.

Now, the hardest part starts…and that is…waiting…waiting….waiting for the results. They said 2-3 days. That puts us up very close to the weekend, but I’m hoping I do not have to suffer through the weekend to wait until Monday. They said that my oncologist will give me the results and discuss them. So, I’m expecting them to call us with the results and then make another appt very soon to go back up there to start treatment to try to treat whatever problem is found. At this point, it’s out of my hands. I have to sit back….trust in the Lord, the lab people and the doctors ……..

Julie

Marion,

Well, the suspense novel continues. We got to the edge of Rochester to drive about 20 miles to visit a cousin when hubby’s cell phone rang….it was the hematologist we had just seen. He had been going over my file and found that he had missed seeing that I’d had the blood smear last week and he saw the results. Because I had come to him today with so many pieces of data and questions, …..he felt he should see if we could come back so he could talk more with us. Soooooo, back to downtown Rochester to the Mayo Clinic area…drop me off, park the car, grab a wheel chair (still having some vertigo problems and always back arthritis) and we zoomed up to 10th floor Mayo Building. We were escorted in right away…but waited about 10-15 min before the Dr. came in. He went over the test with us….telling us that by seeing that, he was altering his best guess as to what we would be seeing with the bone marrow. That is….he believes now that it will probably be ……Myleodysplatic Disease…..basically…the bone marrow stops working right for at least one or more components (though in this case, he thinks the platelets are the one that is not working right because the graphing shows that they have precipitously dropped. The other stuff still has to be ruled out….but in the grand scheme of things….this has about a 30% chance of eventually converting to leukemia. Otherwise, it is a continuous attempt to control it…..drugs….transfusions….destroying blasts….etc, etc…stem cell transplant. Even if they could diagnose it for sure from the blood smear of last week…..they would not be able to tell us the extent of the disease without doing the bone marrow biopsy.

He told us earlier that they have a team to do the biopsies…..they do 2000-3000 per year there….and they are “slick” at it . (His word). He said you don’t want a “part timer” ….you want somebody that it’s just about all they do. The more they do…the faster they are….the better they are….the less pain for you.

Oh…and I will be out with conscious sedation. No question….he said I could be awake if I wanted….but he’d do the sedation (heck yes….I want to be OUT!).

So, tomorrow at 12:45 p.m. I will take a short slumber…..the procedure will be about half an hour….and then they will wait for me to wake up and be able to move around. Then, we go back home (3 hours) to wait 2-3 days for the results.

It could always show “nothing” unusual, but after seeing the smear results, he seemed pretty sure of what it might show. If it is myleodysplastic disease, then besides my oncologist, I will be seen by a hemotogloist who specializes in this blood marrow disorder. My oncologist will direct things.

We all talk about the CC roller coaster, but this coaster is about ready to derail.

Julie

Thank you guys for being here for my rants…….this would be almost impossible to get though without you. I was talking with another CC survivor several weeks ago and she said something about after going through all this it felt like PTSD (Post tramatic stress disorder). I have to say that I agree. Things that used to just roll off my back……now cause extreme anxiety. No more than 5 years ago, if a doctor would have said they needed to do a surgery with local antisectic, I wouldn’t have blinked. But now, even walking into a room to get an IV causes the tears to roll before they’ve done anything to me. So many times,….so many unpleasant procedures….so many times….so much bad news……after a while, ….you just start to expect the worst……regarding news and pain. I have many times that images of surgeries…chemos…etc….come into my head…..and all the feelings come rushing back. PTSD for cancer patients is real. The emotional trauma is real. I think it may be time to talk again with the oncology psychologist who worked with me during chemo.

I saw my GP this morning after finding a new Mayo Clinical note from the phys. assist. It outlined the full problem they found with the blood smear as far as that could go. After my GP read it….she said that a bone marrow biopsy was definitely what was needed to find out what is going on in the bone marrow. She still mentioned the possibility that I lack a gene that makes sulva (and other drugs) damage platelet counts. It’s a fairly common gene deficiency, but more common in males, specifically black males, …..with the radio of men to women being aobut 2 to 1 from what I saw on line. Hmmm…..I do have some black heritage in my family history (we just discovered this two years ago), so who knows…..except for the guy part….maybe I get lucky and that’s the problem. It can resolve fairly fast….or it can take a long time, dpending on the person.

OR…..it could be leukemia.

Here is what the report says:
“Periferal smear identified B-Cell population. Given findings and history of chronic lympocytosis, flow cytometric immunophenotyping performed. This shows 1% myeloid lineage blasts present and rare dysgranualar neutrophils. Samm lambda light chain restricted B-Cell population detected, represents approximaely 16% of total analyzed events. Significance uncertain. “

The one take away was that there were two words at the end of the report that indicated, “significance unknown” . In other words they just can’t make a diagnosis based on the seen evidence….it isn’t sufficient.

So, more waiting, more chewing nails. I didn’t “want” to do a bone marrow biopsy…who would….but a nurse friend said to push for it (you know who you are) and my GP agreed that is what I would want them to do. And no…it isn’t pleasant….but I will get through it too.

Lainy, I am still planning on visiting you in the here and now…on this Earth…..you never know what winter might bring. Meanwhile, I am going to try to create a mental picture of you in your cheerleading outfit next Tuesday . It’s going to be a hard day.. As for the other…..the same could be said forany relationship…..knowing that at any time, something could happen which is difficult to live through. We cheer each other on through a lot of crappy stuff that has happeneded and I hope and pray that for both of us…..we’ll continue to do that for each other as well as celebrate all the good stuff for many years more.

Marion, Yes, it is not lost on me that the CC was zapped and is gone again….NED. I had a hard time last night and off and on today dealing with this new info about the blood problem …lots of tears. I read last night that even the Meyleodysplastic Syndrom turns into leukemia over time in 30% of the cases……and we’re talking more chemo……and if it gets bad enough….the potential for a stem cell transplant. Good grief!!! Seriously, ….what next? Okay …70% don’t turn into leukemia….but apparently they treat MEDS the same as leukemia. I soooo do not want to do another chemo. Sigh.

If fingers and everything else crossed will have some bearing on it….please….turn yourself into a pretzel on my behalf. I know you always have my back….and yes, I can feel it.

The kids brought over the two little grandboys this afteroon….which was a wonderful distraction for a number of hours. Now that they’re all gone…..the walls are closing in again……and the tears are flowing again. But, I’ll find something to occupy myself in a bit and it will be okay again. At least we won’t have to wait too long before going back to Mayo to find out what next.